Judy Panko Reis Transcript
ROSALIND HINTON: This is a test. I'm testing this. Test, test, test to see if this machine is working, and to make sure the volume is right. This is Rosalind Hinton interviewing Judy Panko Reis at her home at 513 Locust in Wilmette, Illinois. Today is Wednesday, February 21st, 2007. I'm conducting the interview for the Women Who Dared project of the Jewish Women's Archive. Judy, do you agree to be interviewed and understand that the interview will be audio recorded?
JUDY PANKO REIS: Yes, I do.
RH: Thanks. Why don't we just start with when you were born, what year you were born, where you were born, and a little about your family background?
JPR: I was born on July 8, 1951, in Coronado, California. My father was in the Navy for the Korean War. My parents were both Roman Catholic. I am the eldest of five children. I went to Catholic grammar schools from kindergarten through eighth grade and then Queen of Peace High School in the south suburbs of Chicago for my high school education.
RH: And when did you move to Chicago?
JPR: Oh, the family moved from California to Chicago very early on. Probably in 1953.
RH: So your grammar school was in Chicago for the most part. Which grammar school was that?
JPR: I went to Saint Bernadette Grammar School.
RH: Okay, and Queen of Peace.
JPR: Queen of Peace High School, right, yeah.
RH: Well, why don't you tell me about your family? Did your father stay in the military? Was he in the military the whole time? Were they middle-class?
JPR: My family was very middle-class. My father worked for – he had a low-level managerial job in a paper company, a carton company, making packaging materials. My mother was a schoolteacher. She was very impressive because she wasn't college-educated at the time that she got married and did a lot of her college training by way of public television classes, because she had three toddlers at home, and ended up getting her bachelor's degree while she had all these little kids. The kids in my family are all very close in age. The first three of us are all a year apart. And then so she – in those days, women didn't drive that much. So, she did a lot of this through distance learning through public TV. And then, she got her master's degree and started working in the Catholic school system as a teacher.
RH: Where did she get her master's?
JPR: Saint Xavier College on the South Side.
RH: Were your parents activists in the community in any way?
JPR: My parents were very invested in the kids. Because some community activities – the little league field – they were instrumental in keeping little league baseball, keeping community swimming, all those things. I worked at the public library. My mother especially was very active in the church and very involved in the liturgy planning of the church and was very interested in Pope John XXIII, which was an ecumenical bent. In those days, it was considered a pretty liberal opening in the church where the church was becoming less traditional. And she was very, very – my parents were both very involved in that. They were also – I view them as being very open to the Civil Rights Movement at that time. We lived in Evergreen Park, Illinois, which was in the South Side.
RH: Do you remember your address in Evergreen?
JPR: 8853 South Utica, U-T-I-C-A. Evergreen Park, Illinois.
RH: So the Civil Rights Movement did cross all your paths in certain ways?
JPR: Yeah, well, it did, because I'm pretty sure in those days – I think when Dr. King marched, he marched in the South Side, which was very close to my home. We weren't marching, but we were all very sympathetic and very open. My parents did have friends that were African-American. And my church was very involved. I hung out with priests that were involved with the youth group that was very interested in bringing the youth on the South Side, the Black youths, together with youths in our church. So we did a lot of interracial stuff during the '60s in the spirit of those times when I was growing up. My parents were very supportive of that. Oh, by the way, I should tell you something important about my mother. My mother was raised in Hyde Park. Her father was a janitor. She went to Saint Thomas the Apostle School. And the reason I bring it up is because it was her first exposure to Judaism, and she was always very open and embracing of Judaism through her experiences of living and growing up in Hyde Park. But she was very poor, okay?
RH: Do you have any memories of childhood that were formative for your activism in any way that you think?
JPR: Well, I think definitely the Civil Rights Movement had a profound influence on me, and the fact that my high school was also integrated at the time. There were a lot of high schools that weren't. I would say that that's part in terms of just the struggle for civil rights. The other thing though that I've been thinking about is that I went to an all-girls school. I went to an all-girls parochial school. I think I got a really strong sense of being a young woman in that school. I had a very – I dated a lot and all that, but I dated boys from other schools because there weren't boys in my school. And I think being the oldest of five kids, three of whom were all brothers when I was in high school, and I went to this all-girls high school, I felt liberated, like getting away from my brothers. It was great. It was really great because, in grammar school, I was always being hauled in by the nuns trying to explain why my brothers weren't cooperating or doing their homework or stuff, so by the time I got to high school, it was great. I didn't have to explain or be the little mother, explaining to the nuns why my brothers were misbehaving. So it was like when I left grammar school, I went into this all-girls setting, and the nuns were pretty progressive. They were Sinsinawa Dominicans. At the time, they were pretty hip. Again the church was, in this opening, embracing ecumenical kind of thing, and very sympathetic to the Civil Rights Movement. But I think personally, it coincided with the fact that I was starting to find myself as a female outside of my family, outside of taking care of my brothers, which was my major identity before that. I think there was always a sense of pride instilled in us in that all-girls school, with the leadership of the rather open-minded progressive nuns. These were not real close-minded nuns. The other thing that was happening to me at that time that I think contributed distinctly to my feminism and my leadership there is that I worked at the Evergreen Park Public Library, which the whole staff, with the exception of the janitor, were women. The head librarian, the assistant librarian were women. All of the other clerks that were there were women. And then the pages, which is what I was, those of us that came in after school in high school and even early college, we were all girls. So, from the time that I graduated from Saint Bernadette and I moved away from my brothers, so to speak, I started becoming involved in what I call these gender-specific environments that reinforced my sense of collegiality with women in professional ways, in leadership ways, where I saw other women and girls, where the dominant people in my workplace were women, and the dominant players, so to speak, or my colleagues at school. All my role models there were female, and all my classmates were all female. So, it became – I really think that that and being an eldest sister of three brothers, which I often had to do the king of the mountain thing where I was fighting for actual turf, physically fighting – I really think that that added to my sense of being proud and feeling like as being a girl or a woman to be that I had some confidence in that. I do.
RH: Does your family –? Are you Irish?
JPR: My father was brought up in a very Catholic Slovak parish. His mother was from Slovakia. His father was from the border of Slovakia and Russia, even though his father was born in Pennsylvania. My father's name is Michael Panko, and my mother's name is Katherine, with a K, Kramer. My mother's family was from, I guess, what was at the time Austria-Hungary. My father's family, as I said, was from Slovakia. Very Catholic. The one thing I was thinking about when you were asking me about the civil rights – I just thought of another major influence on me with regard to civil rights and human rights – was the Vietnam War. This was huge. Now, this gets back to my mother because my mother told me that my Grandfather Kramer was a draft dodger, and that was how he came to America; he was dodging the draft in Hungary. So right off the bat, my mother is this person who's already going against a lot of the traditional Catholics in the church by embracing changing the Mass to English from Latin, which was huge. It was very divisive in those days. So, she was running against the grain there. As I said, the family was open to interracial interactions and social get-togethers. So what happened was my mother – I had these three brothers, the Vietnam War was raging, and there was this draft. It was very scary. My mother just said that her father was a draft dodger and that if my brothers ended up getting drafted that she would do whatever it took to make sure that they didn't have to go to war. So, that was going on when I was in early college. I would say that had a profound influence on me too. I would say both the civil rights – there were three things, now I think about it. There was what I would call almost this revolution in the Catholic Church, where we were – the John XXIII stuff, where there was this major rebellion from the Latin traditional Mass to bringing things – turning the altar around, doing it in English. Then the second thing was civil rights with Dr. King coming through our neighborhoods on the South Side. And then thirdly, Vietnam, the threat of it touching my house, my family, my brothers, and later on, my boyfriends when I was in college. And participating in anti-war demonstrations when I was in college. So, my family supported that, and so did my neighborhood and my culture. I was really brought up with that, and, as I said, the nuns were all supportive of that. I was in that kind of a school.
RH: Where did you end up going to college?
JPR: Well, I went to several different colleges, but let's say I graduated from State University of New York in Geneseo. That was after – I started off going to Western Illinois, only spending a year and a half there, got very sick, had a ruptured appendix, then ended up spending a little time at the University of Illinois Chicago, and then decided to get married to my [former] husband. [We] moved to New York, so he could go to graduate school in upstate New York. It was in Geneseo, New York. I studied philosophy there. I did my bachelor's degree there, and [my ex] and I split up three years later. So that's where I did my undergraduate.
RH: What was your family's – just for the record, what was their politics?
JPR: My parents were – they always used to say that they canceled each other's votes out. And it wasn't strict. I don't think either one of them was a steadfast anything. I will say this. John F. Kennedy was a big influence on our lives because he was the first Roman Catholic President, and I think they both voted for Kennedy; I can tell you that much. But I don't know that – I remember my father threatening to vote for Goldwater a few years later. So, I don't know what ever happened with that. I think they were pretty fluid. But the thing that's most remarkable to me is everybody in my neighborhood – the neighborhood I grew up in was very working middle-class and very Catholic. It was probably about eighty percent Catholic. And it was Irish, Italian, Eastern European Catholic – it was just all mixed, but it was all pretty much working middle-class. So, the politics with my parents were, I would just say, indicative of people like John F. Kennedy.
RH: Okay. So tell me a little about your after – what you've done in this period of time after you divorced. I know you've gotten some more degrees since then. Did you work after that?
JPR: Oh, yeah, yeah. You mean after I –? Okay. What happened was after I graduated from college and I left New York, I came back to Chicago because I got my first major job [there]. I worked for a company called Marsh & McLennan. Marsh & McLennan is an insurance brokerage firm. I was hired to start a corporate library for them but later on, became pretty much a research library coordinator there. This was because I had this background in library work from when I was growing up, and I had a degree in philosophy, so what else are you going to do? So this was my entrée into the corporate world, and it was big-time corporate world. I ended up doing very, very well in it. It turns out because I was working for this insurance brokerage firm, I was actually working with consultants that were actuaries. I was given the charge of setting up a library to support the actuaries and the health care consultants, provide research for them, get study material for them when the actuaries were taking their exams, and became very involved in not only legislative issues that regarded pension plans and investment plans and group health insurance. Shortly after I got involved in Marsh & McLennan, I was approached by the management there that they wanted to support me to go on to – train me to become a consultant or actuary, or whatever professional area I wanted to pursue because they were impressed with how quickly I really bonded with the field of pensions and health care insurance and all that. I had good interpersonal skills and good business skills. But I wasn't that interested in it. I liked running my little library. So, I did that for many years, and I got a really, really – I will tell you that. Now that was interesting. At the time I got into business, I was one of the few women that was not sitting quote, unquote behind a typewriter, and NOW [National Organization for Women] was just beginning to organize. And corporate America was threatened; they were very threatened as heck over NOW because there was a group called Women Employed here in Chicago. In fact, Hedy might even – I'm sure she knows of them. She might have even had something to do with them.
RH: She brought them up.
JPR: Yeah. I've worked with Hedy in different stuff, but that's another story. But I didn't know her then. So, I'm still able-bodied at this time. Bill and I split up three years later after I graduated from college or whatever. I don't remember. I'm working in this predominantly white male brokerage firm, and it's considered one of the top brokerage firms in the world for what it does. They got me setting up this research library thing. There were just very few women that had any power, and there were no people of color in the firm that I could see at the time unless they were working in the mailroom. This was in the middle '70s, okay? So about that time, I started meeting women that were just trying to break into corporate America, into higher levels. I met a woman actuary in New York, and her name was Mary Riebold, R-I-E-B-O-L-D. Got to say her name because she was really, really a profound influence on me. She was, first of all, one of the few female actuaries on staff in the company. She was very, very smart. She had major clients and brought in a lot of revenue. So in the business world, that means a lot, particularly in those days in the 1970s. When I first flew out to New York to meet with Mary, my boss, who was male, said to me, “Don't tell any of the other girls in the office, because we don't usually send the other ones on business trips.” That's the era I was living in, in 1975 or 1976. That was the era. I was traveling at that time. I had my own department. I had my own staff.
RH: So, were you out from under the library at this time? Or were you still –?
JPR: I was still doing the library, but the library was gaining a lot of visibility and power within the organization is what was going on. Because it was a consulting firm, consulting firms sell knowledge and information, and I was basically the research arm for them. And I had to help keep up with their legislative – ERISA had just been passed. ERISA is the Employment Retirement Income Security Act, which had a profound effect on pension plans all over the country. And I had to – so if somebody was, for example, doing – if somebody had a client that was in the oil industry, for example, and they were doing a pension plan or an employee benefit assessment of what kind of benefits should they be providing – Exxon should be providing – they might come to me and say, “Judy, we're researching employee benefits in the oil industry.” And then I would get everything I could about profit-sharing plans, benefit plans, pension plans. So, I did this, and I had a region. What happened was when I came to Chicago, they said, “Well you're going to service not just Chicago; you're going to service all of the Marsh & McLennan offices in the central region of the US.” So I had Saint Louis, I had this – so, I had to start traveling again. So, my job was expanding, my knowledge base was expanding, and I was meeting people. I met Mary first in Saint Louis when she was working there, and then she moved out to New York. It was just so stunning to me when I got into corporate America. First of all, I was very impressed that I got there. But the fact that I was being whispered to right off the bat like, well, we're going to set up this travel and expense account for you to travel but don't tell any of the other girls. Girls, right? That tells you right away that – and then I met Mary, and she was a woman, and they definitely respected her because she just – she was dynamite when it came – she was brilliant, and she just had this remarkable savvy in terms of bringing in money. She was a mathematical wizard, and she was very independent-minded.
RH: So if you could tell me some of the ways she influenced you? If you can tell me some stories about your interactions that meant a lot to you?
JPR: I think the first thing I want to say is when I first met her, she was in Saint Louis, and she was a Middle Western girl raised in Saint Louis. She pretty much worked her way up to becoming a director-level [at] this major firm in New York. So, I had never traveled to New York by myself until I got involved in business. I was in my twenties. And she broke me out of the parochial. I can think of a story for you. I'm going to think of – I think the first thing she taught me is that you didn't have to be with a man to thrive and to live successfully. I wasn't an actuary, but when I looked at where she – when I went to New York, and I saw her living in this Manhattan apartment and supporting herself and getting around New York as a single woman, it started making me think that maybe I could do this. Maybe I could do this. And because she was in a nontraditional marriage – she was married at the time to a pilot who was in Saint Louis, so they didn't even see each other much because she was living in Manhattan, and he was a pilot. She was challenging the norms of society right then. I think the fact that she was pushing the edge of the envelope both inside being a woman – they had to pay attention to her because she was so productive, and she was so smart, and she could drink anybody under the table, which didn’t hurt in the 1970s with this all-white male establishment. When I would be with her when I'd go to New York, she'd taken Chinese food-eating classes – I had never even heard of such a thing, that anybody would. She introduced me to new cuisines. She loved to travel. She loved wine. I was very sheltered. I grew up in this working-class, blue-collar neighborhood pretty much. And Catholic school all the way. She just exemplified to me that you could – as a woman, if you knew what you were doing, you could pretty much compete with the dominant white male norm and succeed even, and that you could do this in a non-threatening way. She laughed a lot. She liked to have fun. We spent a lot of time going out and eating and drinking in those days, which I think everybody in corporate America did in the '70s. Everything's on a rebound now from that, but we used to swap places sometimes. I would go out to New York when she was traveling overseas, and I would just spend a week in Manhattan, and then if I was going out of town, she'd come and spend a week in Chicago in my place. We would swap places. Then, later on, after I got injured and I had to go live back with my parents, she actually came and spent a few days with me, living at my parent's house. And in fact, I just got a letter from her congratulating me on this award. So, it's hard to put into words, Rosalind, what it was like being – it makes me feel very old. But what it was like being a young woman professional in a large New York-based brokerage firm in a non-clerical position in the '70s – people don't have any appreciation for that now because they think we've done really well, is basically what I think we've done. I think those of us that were in there, those of us that were trying to find ways to assert our femininity without co-opting to the establishment, it's just – I don't know any other stories to tell you other than –
RH: You've done a good job of explaining that.
JPR: It's just hard. It's made me really think about what a profound influence she's been, and just I think the whole key to me has always been trying to learn how to step outside the boundaries of the norm in a way without getting co-opted or self-destroying. That's very difficult. Whenever you're challenging the norm, whether it's trying to get the Mass from Latin to English or trying to bring Blacks into your neighborhood, or trying to resist the war in Vietnam, you're always trying to navigate this fine line of not becoming somebody else's puppet or just completely getting so marginalized that you're not effective any longer. You've got to find that way to keep your voice and your message on target so that you can make those changes. I think I learned that in business. I think I probably learned that in business more than I learned – because by that time, I was older. Because in business, the thing I like about business – in those days, I don't know – it's very black and white; it's just very black and white. You did your job and came in. There was a bottom line, and I had to respect my bottom line, and that's [what] they said about Mary. She was just such a huge revenue producer that you were able to meet that test and show that you could produce at the level or whatever it was. It taught me a lot of skills about negotiating through a structure where the dominant values weren't always mine but where I knew that it was important to respect them because otherwise, we weren't going to succeed – just it's where I first learned how to start negotiating win-wins is what it comes down to, which became very, very important for me in this work.
RH: You're a feminist, I take it.
JPR: Yeah.
RH: Was there any other type of activism that you were engaged in in the '70s?
JPR: That's not enough?
RH: Well, no, I do believe it is, but I didn't know if you were – you mentioned NOW. You mentioned the other group from Illinois.
JPR: Oh, I was a member of Women Employed of Chicago. I was probably – I'm sure I was a member of Chicago NOW at the time, yeah.
RH: So, those memories aren't as strong really as just the workplace as making you a feminist.
JPR: Oh, yeah, because the workplace is every day. Plus, all my managers, all my bosses were men. And so, like I say, whether it was just trying to get money to go to New York or go to Saint Louis, everything had to be signed off for and approved by my male counterparts or my senior management, which was predominantly male. There was a lot of sexism, and it wasn't – and I think Mary taught me about that too. I think you just – she taught me, and she didn't think she was teaching me this – I never felt like she was giving up her femininity, and I never felt that I was giving up mine. So this, as I said, is like trying to walk that line without giving up. I didn't want to become a man. I didn't want to be a man. I wasn't necessarily embracing all of what I saw there. But I wanted to remain being a female. But in those days and at the levels that Mary was at and I was at, women were often expected to get romantically involved with a lot of the men. I'm sure each one of us had our share of romantic involvements in the workplace that – let's just say – we were very judicious about because we had to be. I think the workplace was really where it all played out for me because that was reality. It's where the rubber hits the pavement. That's what it's all about. That's whether you're getting that dollar amount to pay your rent –
RH: So, do you want to talk about the influence –? I know religion has also played an influence in your feminism, and I don't know if you want to go there right now.
JPR: Yeah, I can go there. Yeah, that's a good thing. Let's say this, everything I'm telling you about the workplace, as I was going through my identity as a woman in the workplace, there was a day that the corporation brought in an assertiveness training lady, okay? For some reason, the corporation decided we needed assertiveness training. It was just around the same time that I was starting to discover Mary and the fact that there were women like Mary in the world. My mother was a teacher. She was in a very traditional role. And the nuns were in a very traditional role. I did learn about the strength of women and the power of women through my upbringing, but I had never really encountered successful, really, really successful high-level corporate women. They were just like something brand-new to me. So around this time, my corporation brought in this woman assertiveness training lady. Very '70s, okay? I think it was all of these conflicts in my job that I was telling you about, and this woman going through trying to teach us the difference between aggression and assertiveness – it was like a real big '70s thing. Here's what it is to be aggressive. Here's what it is to be assertive. So, that's why I guess that boundary thing stays with me. But as I was going through this assertiveness training, I found myself really questioning for the first time whether I really belonged staying in my marriage because I wasn't very fulfilled in my marriage. My husband was a wonderful person, but it was just becoming clear to me that I had probably gotten married to just leave the house, to fly the nest and be with someone that would be a companion so I didn't have to go out there by myself. His mother was my entrée into the corporate world. She had introduced me to the people that interviewed me for the job. So, once I realized I could start earning money by myself and I was in the midst of all of this activism with NOW and Women Employed and assertiveness training people and role models, I started questioning whether or not I really should stay married because hey, I can support myself. What becomes clear to me is I don't need to have a partner to support me. So, this issue of splitting up comes up with my husband, and he, of course, is – well, I shouldn't say “of course,” but he was against it and felt that business was corrupting me basically. Let's put it in a nutshell. People like Mary Riebold were corrupting me. When I look back on it, I feel bad for him because I just think that we were very young when we got married – a lot of people are in college. So, to get some sense in my head, he dragged me down to the South Side – we were living on the North Side – into the rectory of South Side Parish. I'll just leave it like that. I didn't want to stay in the marriage, I didn't want to be married, and I didn't want to work at staying married, and they couldn't – this was so foreign to the priest and my husband that I just wanted to be by myself. I just wanted to do this. So, I started living on my own. I still continued to keep going out to New York and hanging out with Mary and exploring my professional talents in business, and I'd keep getting more successful in business. I'd start getting job offers in New York. I'd get job offers in Seattle. It's just that people wanted to hire me. It's not just that I'm supporting myself in Chicago, but I'm becoming a marketable person. So, I'm living independently by myself. I've got my own car. I've got my own apartment. One day, I'm living independently in Rogers Park, which was a very Jewish neighborhood, but I never thought about it that way. It was like this ex-Catholic girl or this girl that was raised Catholic, who was trying to find herself. I go down to the Pratt Avenue Beach one day and just looking at the – sitting down there with my bike and looking down at the water. This young man comes up to me, and when I think about him, he looked very foreign to me. I remember him coming up to me and asking me if I – it was very funny. He came up, and he asked me if I came to the beach or to the pier for solitude, which I thought was a weird thing to ask someone because if you did, why would you start talking to them? Like, well, if you're here for solitude, here I am, going to break up your solitude. I found this very ironic, and I said that to him. I said, “Well, if I did – if I was here for the solitude, I wouldn't be talking to you.” This turned out to be Philip Wolsk. Yeah, I didn’t have [an] understanding of the culture. I had no understanding of the expectations that might be on a person to go into a family business.
RH: Well, maybe you should just say what the culture is, because why would you know the culture he came from because he was more than just Orthodox. He was –
JPR: His father was Hasidic, and I don't know enough. I'm going to tell you this story. This is a good story. This is the story that I had no idea what I was involved in at the time, [but] I was in it. I look back now, and it makes a little more sense to me. Philip was trying to explain to me that he came from this family that had this Hasidic background. But I didn't know what Hasidic was because I didn't really understand what Orthodox was. So eventually, Philip moved in with me and he started living with me at 6976 Lunt in Rogers Park. I think he was probably a third-year medical student when he moved in with me. Somewhere in his training for medicine, he wanted to go to one of the hospitals, one of the Jewish hospitals in New York. He wanted me to come out and visit him. So he made arrangements for me to stay – I got to think of – you might have to help me out here. I went into this place in New York where all of the people dressed, the women wore the wigs and long dresses, and the men wore peyoses and big hats. I stayed in the basement. I slept in the basement. And Philip slept upstairs in the house. And it was like – I guess it was a Hasidic part of New York. What are some of the –? Do you know some of the names of those places? I might know it if I heard it. It was in Brooklyn, I think, maybe.
RH: Yeah, I don't know the names of all. I know Crown Heights.
JPR: Crown Heights. That's one, and there's another one, right? There's another one. Because we went out. He took me out – I guess it would have been Shabbos when everybody – it was like right after –
RH: Before or after, I guess.
JPR: It must be right after. Because all the people were coming out in the streets, and that's when I got to see everybody, and that's when I realized – it almost felt like I was with all these Quakers.
RH: So, he hadn't prepared you for that, really.
JPR: He tried, but I didn't have any frame of reference. I didn't. That's why the only frame of reference I had was the Quakers. They just were people that dressed like in another century and were very religious in their own way. I didn't have – he just said you're going to have to sleep in the basement, and he just said it's going to be like another century for you. So, that's how he prepared me. But I never understood, Rosalind, until now what he was really struggling with when I met him. His family – now, his mom and dad had moved to Queens, and what I don't know is whether they had moved to Queens in a less fundamental setting – they were Orthodox, but they were not dressed like the people where we were staying when he was doing that medical – but I know that that was his father's upbringing, and it might have been his mother's upbringing because my understanding is – I don't know for sure, but I would assume his father would have married somebody that was very close to his tradition. So, the only way – he always shared these kinds of things with me like they were Disneyland in a way, in that aspect. He would call me Jude. Sometimes he would call me Judith. He would say, “Judith, this is going to be really weird.” So there wasn't a frame of reference. There wasn't anything he could prepare me. There was nothing. It was a very profound experience for me when I look back on it now. It wasn't as much at the time. It was more like Disneyland at the time. Because he was a new guy in my life. I was in major rebellion. My parents were barely talking to me. The priest had already let me down. I met this guy who is a doctor who is on the run from his own family in a way and struggling inside and outside. I think what was interesting is that he wasn't – he loved his family very much, but he was struggling. He was really struggling with – and he seemed to have a real sense of the spiritual. He had a very gentle way about him, and he used to buy me books because he knew I was a philosophy major, and I would always ask him questions about medicine, and he would answer me, and he would talk to me about Torah, and so he bought me two books. He bought me a copy of Rashi's commentary on Genesis. That's pretty intense for somebody that doesn't know anything about Judaism. This is the first book he bought me. And he inscribed it with explaining to me that it was a holy book and if it fell to the ground, I should kiss it. Then, he bought me a New Age Hasidic book. See, it was the '70s. Which tells me, now that I think about it, that that's what he was trying to – that was the direction he was trying to go into, was this New Age Hasidism. He told me that this New Age Hasidic book was very profound for him and that he was reading it on the El one day when he was coming back from medical school to our apartment, and that he had an altered experience when he was reading it. He was really impressed with this. So, he was a very spiritually minded person who was just trying to struggle, I guess, through these things. But I didn't have a context for any of it until now. When I tell you these things, it starts making more sense to me. But I was just like, “Wow.” He'd come home and tell me these things, and I would say, “Wow. Well, that's interesting.” The only context I had for his questions about his religion and his family was my own experience with the problems I was having.
RH: Well, looking back on it now, would you say he's also a role model?
JPR: Yeah, he was a huge role model for me because he –
RH: Let's think about the things he gave you.
JPR: The first thing he gave me was a gentleness. He was one of the most gentle spiritual guides because he never pushed me into Judaism, but he had this very gentle way of revealing the spirituality and the power of Torah to me. When he himself was struggling with the values of his community. It was just always there. It was there when he gave me the Rashi Genesis book with the inscription instructing me to kiss the book if I had dropped it. It was there in the Hasidic New Age book. It was there when we went to Hawaii, and he introduced me – when we were in Hawaii – by the time – I'm jumping ahead, but when he finished medical school – when you finish medical school, you have to decide where you're going to do your residency. So he applied to Cook County, which he loved. He applied to Northwestern. And he applied to Hawaii. Because we felt like residency was going to be real [hard], and who wants to go through residency when it's zero degrees out in the winter. We were coming out of these really bad winters in Chicago. He got into all of them. He got into every one of them. And so we were like, “Wow, we might as well go to Hawaii?” So, he moved out there first, and after he got a place for us, and I went out there, we made a decision to get married. We were going to get married in July of 1980. And so, again he never pushed me to convert. He just never pushed me to convert. But I said, “Well, who's going to marry us?” And he said, “Well, let's talk to one of these Rabbis on Oahu, the island of Honolulu.” His residency was at Queen's University Straub Hospital – was where his residency was, and that's how we wound up in Hawaii. So, we went to a temple there, and it was my first experience in a Jewish temple. It was in Oahu. Pretty interesting. I remember going into the temple, and now it makes more sense because I have a context now. He picked up the siddur and held it for me and showed me where we were and showed me the English stuff. Then I think what must have happened is somebody invited him to do an aliyah, which I didn't know what that was. I remember somebody coming up to him and him explaining to me later that this was an honor. What I was told was that after he died, there was a service in Hawaii and the rabbi who did come to visit me in Hawaii when I was in the hospital after his murder and my attack, the rabbi who apparently gave a talk and talked about how Philip and I came into the synagogue that day and how he was instructing me about the service and showing me, pointing. Somebody told me that. I was too sick to obviously attend any kind of service at that time. But yeah, he was a major role model for me. He was so gentle. He bought me a Christmas tree when he moved in. He had never had a Christmas tree. So what he said was, “I've never had a Christmas tree in my whole life. Now let's get a Christmas tree.” So before we moved to Hawaii we had a Christmas in Chicago. He came home with this Christmas tree. And I didn't even care. It was funny because as far as I was concerned – and by that time my parents didn't even want him in their house because they were really angry with me. They came around later before I went to Hawaii. So, I didn't even celebrate Christmas with my family because there was all this tension because of my divorce. So, Philip bought me a Christmas tree. So, that was my first introduction to Judaism. What an interesting introduction, this guy from this Hasidic family really with Hasidic roots taking me into this Hasidic town that I – and then coming home and buying me a Christmas tree. Then, taking me out to Hawaii and giving me these books that I still have. And in the Rashi book, the inscription in it – and I can get it for you if you ever want it – he says, “I hope somewhere in these pages that you can find something that you're searching for or that you're looking for someday.” And the book looked like Greek to me, so I didn't pick it up for years. The first time I picked it up was just recently with my Rabbi, [Rabbi Mishkin], here, and I asked him to help me understand how it worked.
RH: Is it in Hebrew?
JPR: The whole book is – I can show it to you before you leave. It's in Hebrew with English commentary. So, he was my gateway to Judaism and my first role model and just so diverse of one when you think about it. He wasn't like –
RH: Very tolerant and open-minded.
JPR: Right. Well, I didn't – see, I never understood the amount of tension that he was living with with his family until after his death because I had no context for the religion. So, when he had moved in with me in Chicago, and he wanted me to meet his parents, he explained to me that I could not stay at his parents' house but that his mother's brother lived in the Village and that he was a black sheep, and we could stay with them. So we stayed with his uncle and his girlfriend who lived in the Village. So I guess in his family, he related to the black sheep on his mother's side, who actually – that uncle wrote to me after Philip's injury, and actually, it was Philip's uncle that told me about the Hasidism background and his family and explained it to me because he knew that I didn't come from that background. That's when I understood it more deeply.
RH: Do you want to talk a little bit about what happened in Hawaii, since it's so pivotal to what you're doing now and your life now?
JPR: Pivotal to everything, yeah. So, Phil and I were living together on Lunt in Chicago, and he decides that – we both decide that it would be fun for him to do his residency in Hawaii at Queen's Hospital, and that I would take a leave of absence from my job and that I would go out there. Working in employee benefits, you knew that you wanted to take a leave of absence, so you can keep your benefits going, which was a very wise thing on my part when I think about it. So I went to my employer – and I told you I was very successful; they didn't want me to leave. They said, “Sure, we'll give you a leave of absence.” Because I didn't know how long we were going to stay in Hawaii. I didn't know what was going to happen. So, I left to go to Hawaii. I moved into a house that he was renting for us there, and he was doing his first year of residency. After he finished his first year of residency, which was a killer of a year, he said, “Let's do some camping and exploration of the other islands. I hear they need doctors on the Big Island.” We were living on Oahu. And he said, “Why don't we go to the Big Island, and we can start checking out the scene there because there's a lack of physicians, and we can go talk to some of the medical people there and start exploring it as a possible option after I finish my residency.”
RH: Keep going, I'm sorry.
JPR: So, I say, “Fine.” He had gotten all this information. He was very excited because you don't have any time off to really relax and enjoy anything in your first year of residency, even when you're in Hawaii. You're just on call all the time. He started getting information about the Big Island. He sat down with me and went over all these brochures. “We're going to rent a car. We'll go here, we'll go here, and then we're going to end up at Volcano House in Volcanoes National Park,” which is a very big attraction on the Big Island. We can do some tent camping, which we both liked to do, and we had done a little bit here in Chicago – I mean, the time we went to Wisconsin. So, we both liked nature a lot. He was very good with nature. So, we flew from Oahu in April of 1980 to the Big Island, rented a car, and started whatever – thinking of the word – an itinerary that we had set up for ourselves in advance and probably stayed at a few different places, different places on the Big Island. Probably about our maybe fourth or fifth night on the Big Island, we went into a state park; it was called MacKenzie State Park. It was right outside of Volcanoes National Park. It was on the perimeter. This MacKenzie State Park was quite beautiful. It was right along the ocean, right along the Pacific, the cliffs of the Pacific. There were orchid fields around it. It was just magnificently gorgeous. I tell you this because it was an indescribably beautiful place for Philip to choose to die at some point. He didn't consciously choose. But at some level, I think his soul decided to leave at such a beautiful place. Anyhow, we set up our tent, and we spent one night there. The second night we were there – the way I remember this – and I tell you this the way I remember it. And then some of it that I'm going to tell you is what the police and the doctors and my family told me later because a story is like that when you tell it years later. What I know is that we went into the tent to go to sleep on the second night there. It was in April 1980. And what the police say is they think at four in the morning that – I remember hearing Phil in some distress, begging with what I recall male voices outside of our tent, who sounded very threatening to me. I remember him saying, “We'll give you whatever you want, just don't hurt us.” And that's the last thing I remember him saying. The next thing I remember is vomiting and putting my hand up to my head and swallowing all this blood and trying to wake him up because he was a doctor, and I kept saying, “Phil, wake up, wake up. I've been hit. I've been hit.” And I couldn't wake him up. I picked up his hand, and I was trying to get some kind of extreme reaction. I started folding his fingers back to try to get his attention to help me. I was told that we were assaulted at four in the morning by perpetrators that were never found, [and] that we were found at four the following afternoon. There was a passerby walking his dog, and as they were walking – the gentleman was walking his dog along the Pacific. He passed our campground, and he noticed that at in the afternoon, that the camp was pretty much deserted, as most campgrounds would be at four in the afternoon, but that there was one tent that was collapsed and that there was movement in it, and that he and his dog were drawn to investigate this spectacle, which apparently was bloody me trying to get out of the tent. Apparently I kept calling this individual that came to rescue me “Philip.” So, I don't know. I don't know. And apparently – I'm going to tell you something. Philip had given me a necklace in Chicago that he'd gotten from this Hasidic neighborhood when we were in there, and it was a chai. It had eighteen little diamonds in it. He explained to me these eighteen little diamonds. He showed this to me and explained to me where it came from. After the ambulance came and took us away – I guess they had to fly me from Hilo Hospital back to Philip's hospital because there was no neurosurgeon on the Island, which was the whole reason we were on the Island, to begin with, was because we wanted to find out what kind of doctor opportunities there were, because we heard there was a need for doctors. So, they flew me apparently – again, I say I kind of remember them telling me that they were going to fly me to Oahu for brain surgery and that they were going to have to cut off my necklace and my hair, which they did. They shaved off my hair, which you have to do for brain surgery. And I look back on it now, and I remember thinking down the road, Rosalind, that the necklace was my leash to life because I apparently was moribund when they found me. I remember vomiting, and I remember being very thirsty, and I remember the ambulance people. I kept telling them I wanted to go to sleep. They kept saying, “Just try to stay awake. Just try to stay awake.” So I'm sure I was on the verge of expiring at that time. So then, apparently, I was lucid enough somewhere along the line to give them, the rescuers, my boss's phone number, and my parents' phone number. My youngest brother was living in Denver, and my parents sent him out because he was the closest one, and then they later apparently came out. It took me a very long time – a very long time to understand what had happened to me and to understand that Philip was murdered. And I didn't know. It was just very difficult. It was just very confusing. It was very hard. I think I was in Hawaii until Mother's Day of 1980. These people in my company, my boss, John Kimbrell, and my parents, arranged for a flight nurse to accompany me, and they made calls to the Rehabilitation Institute of Chicago, which we were told in Hawaii was a really good rehab. They said that I was very lucky because my hometown of Chicago had one of the best rehabilitation hospitals in the country. It just so happened that the rehab hospital was a client of my company at the time. I would have gotten in there anyhow, but it just made it a little easier that my boss could help my parents. My parents were in Hawaii. My parents worked with my boss to try to get me into rehab. Now the thing that was interesting about that was that my parents and I, when we were in Hawaii, had no idea of the extent of the damage to my brain. I guess when they first found me they didn't know if I was going to live. And then they didn't know if I was going to live with – how much function I would have, whether I would be in a vegetative state. I apparently was hit with an object like a baseball bat nine to twelve times. My skull was crushed. Philip died of head wounds. His skull was crushed. The damage was all sustained in the right hemisphere of my brain, which left me with physical paralysis on the left side of my body and loss of vision on the left side of both eyes, which is my left visual field, which would forever prevent me from driving. But I didn't know all of this right away, and neither did my parents because when I was in Hawaii, I couldn't sit up and I wasn't talking very much, so the medical staff, which were all colleagues of Philip's, had taken my parents under their wing. The social worker there was actually a friend of ours. A nurse on staff there was a friend of – when I say ours, Philip and mine. They're the ones that really kept encouraging my parents to get me in a rehab setting. Because my parents didn't understand that I wasn't just going to get out of the hospital and bounce back. And neither did I. I didn't really even grasp Philip's death until months after I got back to Chicago because I had sustained so much brain damage, and I was so immersed in the loss of function from the effects of the brain injury. It was too much to process. So I got admitted. They get this plane with this flight nurse, and my mother says it was Mother's Day. So we flew back, and my mom, my dad, me, and a stretcher. Apparently, they had the stretcher that took up two or three rows in the airplane with this flight nurse. Got an ambulance when I got to O'Hare and took me straight to RIC, Rehab Institute of Chicago, where I became an inpatient. I started to become gradually aware of what my life was going to be like living with the brain injury. I was in physical therapy and occupational therapy. The reason I tell you that – I didn't even – I had no connection with Philip and what was going on or what had happened with him. The nurses would come into my room and say, “You have a picture of Philip. Let's put up a picture of Philip in the room.” And the police had confiscated everything. I was without – if it wasn't in the apartment that my parents moved back, any of our possessions were – because it was a crime site. It’s just very difficult to describe again to people until you've been through an experience like that. How confusing it is. And I can't even tell you that it was horrifying because you're in such a daze that you don't know enough. You're so numb; the horror doesn't come till later. So I had a very strong social network of support here in Chicago. One of the things that I had that Philip had bequeathed me was a very strong network of Jewish friends, one of whom was Shelly. Now Shelly is another important role model in my life – my husband. I had met Shelly playing softball with Philip before we ever left for Hawaii. And Shelly was dating a girl at the time. I don't think that's relevant. But I was with Philip. Shelly was with his [girlfriend]. But before I left for Hawaii I wanted to sublet my apartment. I had gotten to know Shelly from playing softball with him. I had heard that he was looking for an apartment. He was living in Rogers Park. He was a friend of Philip's best friend in medical school. Philip's best friend in medical school was Carl Albun. And Murray Scheinman. And they were both doctors and they were both real good friends of ours. Well, it turns out that Shelly went to school with Phil's [friends]. I met Shelly through Philip's medical school friends. And Philip's medical school friends were all raised in Chicago. They had a friend named Shelly, who turned out to be my husband after the injury. I had sublet my apartment to Shelly before I went to Hawaii. When I came back from Hawaii, Rosalind, my parents, their friends, the priest, and all my Marsh & McLennan friends, everybody was there. They were wonderful. But the people that kept coming back and back and back and back and back were Philip's medical school friends, were Jewish men friends. And Shelly. And these were all these friends that I had met through Shelly and Philip, who I didn't have. I had this whole little Jewish network of friends there for me that I hadn't had before I met Philip, who ended up being – there were many people of this little cluster of Philip’s Jewish friends that just kept – they'd stay by my bedside when I came back, and when I got out on weekends, they would come up to my parents' house and visit me or take me up back to the North Side. They just never stopped being my friends. It was very ironic to me because they were all people that were new in my life. I only knew them when I met Philip. It was just really remarkable to me that I had socialized with them, I had played softball with them, I had partied with them, but they weren't the people that I went to high school with or college. That they were with me like my friends from high school or college. They were that tight with me. They were just so tied to me. And this was very remarkable because I certainly didn't know any [of them before] – I only knew Shelly for probably about a year before I went to Hawaii. I knew Murray Scheinman and Carl Albun, both physician friends of ours now that were in medical school with Philip at that time. Certainly, no more than I knew Phil. But they were with me as if they were my childhood friends. And they're still my friends today. But chief among them was Shelly. Because Shelly and I had developed a very close friendship at the time that I was subletting my apartment to him before I moved to Hawaii. I stayed in touch with Shelly through letters and phone calls when I moved to Hawaii. In fact, I was hoping that Shelly would come out to visit us. In fact, Carl, one of the doctors that I was telling you about, was actually – had called Philip and was thinking of actually coming out to do some medical work with Phil in Hawaii before – this all happened before the injury, obviously. So what shocked me when I think about it – I wasn't shocked at the time, but now I look back on it, was just that Philip bequeathed this little community of Jewish contemporary friends, many of whom were in the healthcare professions, were doctors, and that were just like these angels to me. And Shelly was among them. And Shelly and I had a real instant simpatico with one another. When we talked about him subletting my apartment, he knew Phil, and Phil knew him. And they respected each – they liked each other. They didn't grow up together. They didn't know each other that well. But they had a strong respect for one another. So what happened was Shelly and I were dating around the time of my return to Chicago in my rehab. It was very hard because I was still learning how to walk, and my head was shaved, and I had two black eyes, and my teeth had been knocked out. I was not – looking at me now, I'm old – I'm very old. I was in my twenties, obviously then, and for anybody to go through getting their hair shaved off, two black eyes, and their teeth knocked out, you're going to – and plus, my body was paralyzed, the left side of my body was paralyzed, and I was going to therapy all the time. I was trying to learn how to use my left arm. I thought I was still going to recover some of my vision so I could drive and I could fly all over the country and jump around in taxis and run around Manhattan with Mary Riebold. But I was never – I didn't think – it really wasn't in the future for me to be like that. But I didn't know. It took me a very long time to understand that I was never going to walk again the way I had ever walked, that I wouldn't ever run or dance like I had. That I wouldn't ever drive again. That I was going to be physically dependent on people for a lot of my care for the rest of my life. It was not an easy thing to come to understand. So I was going through this thing. After I got discharged from the rehab hospital, six months after I was admitted. I got admitted on Mother's Day and left on Halloween. They would not keep you there that long now because of managed care. It was before managed care, so I got to stay long. So, I moved back to my mom and dad. Back into the Catholic neighborhood in Evergreen Park. But it's a whole different thing. I'm completely dependent on my parents. I can't drive. I can't walk. And I don't know how in the heck I'm ever going to get a life back. It was like – Rosalind, for me, this whole thing with the church – I was just living on my own as an independent woman, I was supporting myself, I had my own car. I had just broken out of this whole big deal. Then, I meet Philip, this gorgeous, gentle doctor, student doctor who adored me, who's teaching me all this stuff. We had all these dreams. Going to Hawaii. I was just like breaking loose. I was just breaking loose. And there I am back in Evergreen Park, living with my parents, and my mother was taking me to the bathroom and giving me my baths and dressing me. I had to figure out how I was going to make a new life. I was trying to date the people that were interested in dating me. One of those people was Shelly. And the thing that was cool about Shelly was that he was very patient, and he was very giving, and he and I had struck up such a close rapport intellectually and emotionally before I went to Hawaii that he still believed in that part of me even though I didn't feel very much a part – in touch with all that. He was very closely connected with all of Phil's medical student friends. So, I had this little Jewish group of friends that I was telling you about. And so Shelly and I – what would happen is Shelly would come to my parents' house during the weekends and visit me. I was during the week going to physical therapy as an outpatient at the local hospital. And then I was starting to take some classes at the local college, not because I needed classes, but as part of just getting back out in society. The question was whether or not I was going to go back to work, and I was struggling with it because I didn't – I wasn't really planning on spending the rest of my life in corporate America. That's one of the things I was exploring when I was out in Hawaii. Actually, when I was in Hawaii, I had hooked up with a professor, Professor Dick Chadwick at the East-West Center. He had talked about hiring me to do research with him on international trade models. Because I was using some of my business experience and thinking I would probably go that direction when I was in Hawaii. But I wasn't planning on staying in insurance brokerage. So when I was in rehab, everything was like, “What am I going to do? What am I going to do?” I'm living with my parents. I'm not like this fast successful cool woman professional any longer. I'm just learning how to walk. I can't even dress myself. It was hard. It was indescribably hard. So I'm trying to find myself. So Shelly and I do this dating thing, where he and I are seeing each other on weekends for about three years. I'm still hanging out – and those weekends, I would always end up coming up to Rogers Park because he had sublet my place on Lunt, the 6976 place on Lunt. He was living there, and all of Phil's friends that were Shelly's friends and my friends, my new friends, were all in that area in Rogers Park. So my weekends, I would spend up in Rogers Park after Shelly came down and got me, and then he would drive me down so I could do my physical therapy and my occupational therapy in the outpatient and live with my parents during the week. And then I started taking these classes at Xavier College again, not because I really needed another degree, but because I figured that one of the things I wanted to do was go to graduate school as a way to start bridging myself back into some kind of community integration as we might call it today. I wasn't going to church because I wasn't interested in going to church, and as far as I was concerned, I was excommunicated. There wasn't really much of a role for religion for me at that time. My mother was very involved in religion, and so there were nuns and priests at my house all the time. And the community was supporting my parents. Her friends from the church were driving me to therapy because my mom had to work. My dad had to work. So the Catholic community was there for my parents to get me back and forth to the hospital. And they gave my parents money to fly out to Hawaii. So, the fact that the religious community, even though I was struggling with my relationship with it, was there for my parents and played a big role in assisting me when I had nowhere else to go, and I wasn't in a situation to move back on my own and live on my own. I lived with my parents. So all of a sudden, I'm in this situation of having to get out of my parents' house again, only this time not able to walk, not able to drive, and not working. Having to figure out how was I ever going to get to that place of being a woman like I was when I was hanging out with Mary Riebold – was I ever going to be able to achieve that sense of pride and dignity of being a female that could support herself and not be just dependent on being Mrs. So-and-so? Was I ever going to be able to be a woman on my own with all of these disabilities? Brain [injury] – I had cognitive disabilities. I'm talking about the physical disabilities to you, but I had a lot of disabilities that created a slowing in my thinking. I wasn't able to multitask as much as I did prior to my injury because of the right hemisphere injury. Reading was a lot more effortful for me because of my blindness. It still is. Writing was difficult. Everything was hard. I had to relearn everything in therapy. And the only way I was ever going to learn what I could do with ease or what I was going to have to learn how to compensate for was to get into either the workplace again or into the classroom. And I chose to do this in the classroom. So in that three-year span while I was dating Shelly, I did a few classes in the local neighborhood at Saint Xavier College and then came to the University of Chicago as a student-at-large in philosophy. It wasn't because I was necessarily pursuing any big career in philosophy, but it was what I had undergrad majored in, and I figured I really wanted to learn more philosophy. And I had met Professor Richard McKeon, who was an Aristotelian scholar. You might have heard of him. He was an Aristotelian scholar out of the University of Chicago who later died. But I had met him at a United Nations event shortly after my injury when I was using a wheelchair and told him that I was a former philosophy student and that I had been injured, and that I was thinking about returning to studies in graduate philosophy. He had said to me if I was interested in studying at the University of Chicago to contact him. And so I did. And so I was living with my parents during this recuperation period. It was a hell of a place to do rehab. The University of Chicago Philosophy Department, being a former philosopher yourself, was not an easy place to come back into. Talk about male-dominated. There were no female professors on the faculty in the philosophy department at the University of Chicago in 1982 when I first got there. So, it was another thing where I was back into the whole male thing. But this time, I was with a disability and a brain injury in the University of Chicago Philosophy Department. I figured, “Well, this is where I was going to learn.” I was going to figure it out. I came back as a student at large because I figured, well, student-at-large, I'm not formally accepted into the degree program, and if I can make it and I can get in the degree program and I can get the degree, at least I'll have some currency to show myself. I can prove to myself and to the world that I can make it with this brain injury. I can read, I can write, I can intelligently converse with people, I can meet deadlines, I might be able to make it in the workplace. With a brain injury you really don't know, Rosalind, you just don't know how much you're going to be able to really keep up cognitively. Then physically, I didn't know if I could carry my books. I didn't know if I could even navigate the campus because it wasn't accessible. Totally not accessible. I don't know if it is now, but it wasn't when I was there. So, as I was going through this really difficult period, Shelly and I started talking about – my hair started growing out. My black eyes cleared up. I was still very shaky on who I was and what was going on with me, but we started talking about getting married. I knew that his parents were what he described as Holocaust survivors, but I didn't really know what that meant. And that if we did get married that it would be important to him for me to consider converting. And I said, “Well, I'm not opposed to it because when I was with Philip, I met this rabbi in Hawaii, and Philip had given me these books, and even though I had never formally pursued it, I thought it was something that I was open to.” And so he said, “Well…”. So, one Christmas – I think it was – Hanukkah – Christmas/Hanukkah, he gave me an engagement ring. And of course my family was very happy, and I think his parents were gradually aware of it, but they were not happy. They were very concerned about it because the conversion made no difference to them. The fact that I was willing to convert made no difference to them because they came from Poland, and even though my mother-in-law had fled Poland and had to disguise herself as a non-Jew to go to Russia and hid during the war, and my father-in-law, his family was transported to a camp in Siberia, so they got out of Poland, they weren't married at the time that they were in Poland, they were not married. They didn't get married until after the war and somehow ended up meeting up again in Germany. That's my understanding. This was their story. All I knew, from my point of view, Shelly was telling me that they were not sympathetic to the idea of me converting. They hadn't met me. They weren't interested in meeting me because it wasn't personal. Shelly and I were talking about getting married, and he said that it would be important to him for me to consider converting. I was very open to it because, this time, I was pretty intrigued by Judaism because of Philip. But Shelly told me that my conversion was not going to change the concern in his parents' hearts because of their experience with the Holocaust. They wanted to make sure they had Jewish grandchildren, and they didn't really trust that anybody that converted would be able to give that to them. So Shelly went to meet with his family's rabbi from his family's synagogue. And then, I met with the rabbi. We talked about me taking classes to start learning Hebrew, and I did. I started going to these classes every Sunday, and then we set a marriage date for 1983. One day, Shelly got a call from the rabbi, who said that he had met with Shelly's parents and that he could not convert us – convert me.
RH: Did he give a reason?
JPR: Yeah, Shelly's parents. So, when I tell you that I had this journey that started with Philip, meeting him – well, actually it started with me pretty much getting rebuked by [the church]. By this time, I'm like, “Wow, this is really terrible. This really sucks. Who knows what's going to happen to me? I'm disabled. People don't want to have anything to do with me. I'm not Jewish. They're scared of me because I'm not Jewish. They're scared of me because I have this disability. His father thinks I'm going to be – I'm this sick shiksa. I'm a sick shiksa. Why in the world would any Jewish man in his right mind go against his parents' wishes, who have suffered so much and bring a sick shiksa in his life?
RH: Wow, talk about labels.
JPR: It was hard. Everything was hard for me. Everything's been hard, but it's easier now. This is the happy part. So, I said, “Screw this, I'll find my own rabbi.” That's the rebellious Catholic girl in me, that was what I learned. By that time, all of the feminism that I had learned from the Catholic girls' school, working in the women-dominated library, the Civil Rights Movement, the Vietnam War stuff, I just thought there's got to – being the only woman in business stuff, I was like –
RH: Well, and your rehab.
JPR: Yeah, my rehab, I'm like –
RH: Your struggle to come back.
JPR: Yeah, I'm just – you know what? I will find – I don't need your freaking rabbi. I'm going to find my own rabbi. I don't need you. I don't need my parent – if I want to be Jewish, this is about me; it's not about you. It's not about your parents. It's about me. I will find a rabbi, okay? So, at the time, I was going to the University of Chicago. So, I said there's got to be a Hillel on campus. And so, dig this, I call up this rabbi, the only rabbi I'd ever met in my life was this one in Hawaii, and the only synagogue I'd ever been in in my life was this little one in Hawaii. Oh, I shouldn't say the only rabbi. No, I met the rabbi that refused to convert me. I met that guy, and then I met the guy that – yeah, so I met two rabbis. I'd met the guy in Hawaii who was nice to me and then the guy here, the family rabbi, who was going to convert me and then pulled the rug out on me. So, I'm living at my parents' house, my Catholic house, and I call up this Hillel, and I ask to meet with the rabbi, and it's Rabbi Danny Leifer, key name in my story. I don't drive. So, I've got to get my mom, my Catholic mom, to drive me – me and my disabilities, me and my disabled self – from Evergreen Park to the University of Chicago Hillel, which has all these stairs, like tons of stairs. Fortunately, at that time, I was walking well enough – my walking has since – I've lost a lot of it, which we'll go into later. But I get up these stairs, and they tell me that's where the rabbi is. I get up these stairs, and there's this man sitting there with a long gray beard in a rocking chair in front of a fireplace with a kippah on, and he was so nice. I tell him my name, and I start telling him the story, the one about meeting Philip on the beach. I don't even think I got into the [church] stuff. Well, I did tell him that I was of Roman Catholic background. But I start from there, and then I go through the whole Hawaii thing. Then I go through the whole rehab stuff, and the stuff of Shelly, and then Shelly's parents, and I talked about the kaddish reading stuff with Philip's parents. I get through the whole story, and he looks at me, and he says, “Wow, that's quite a story. How did you find your way here?” And then I tell him about the rabbi that refused to convert me that said he was going to convert me. And I just said, “I was going to find my own rabbi, and since I was a student here and my mother grew up in Hyde Park, and my mother's always been an ecumenical kind of a Catholic, I figured you might be a good place to start. Would you study with me? Could I study with you?” He said, yes, but he wanted me to start bringing Shelly. So, I studied with him for a very long time, for probably over a year, and Shelly met with me, and he gave us all these books to read, and we started going to the upstairs minyan, which I don't know if you've ever heard of it, but the upstairs minyan at the University of Chicago is an egalitarian minyan. It was very famous in its time, and I think it still exists. Probably some evolution of it down the road. But the thing that was key about it was that it was egalitarian, and I again didn't know enough about Judaism to appreciate the egalitarian aspects of it, but it tells you, though, that somewhere spiritually or intuitively down the road that the rabbi that ended up embracing me and that I ended up embracing was a rabbi that was really into egalitarianism. So, it was through his wisdom, his spiritual guidance, that I started to get a context for what it would be like to convert, what it would be like to get married. He told me and Shelly that what we were experiencing with Shelly's parents was not uncommon with parents like Shelly's that had been through the war and that had survived the Holocaust, and he said it was also not uncommon for children of these parents to marry non-Jews, which really helped everything because I think it helped give Shelly and me both some sympathy and some understanding and tender understanding about his parents and also relieved some of our guilt about hurting them. Because it gave us a broader context for the fact that what we were going through was not unique to us. The unique part for us was the fact that I had this whole history of this disability thing, this violent thing happened. So, the disability just complicated everything. It was like what we were going through was hard enough without the disability. The disability kept making it harder. So, he became a major ally to Shelly and me in this continuing journey of mine, and all this time, I'm struggling with my disability because I'm not using a – I'd gotten out of the wheelchair when I left RIC around Halloween when I moved back into my parents' house. I was walking with a leg brace and a cane. But I wasn't very stable. I was visibly disabled. There was never any doubt in anyone's mind that I couldn't use my left side, though the cognitive disabilities and emotional side effects of the violence and all that stuff was very invisible, and some of it wasn't even all apparent to me. So the thing about Rabbi Leifer is he was very gentle again, and he was very open to studying with me and Shelly and helping us understand where Shelly's parents were coming from even though he never met them. What he said to us was that after we got married – he says he was very certain that after we got married, and especially after we had a child, things would change.
RH: Did that happen?
JPR: Yes. Well, what happened was we did get married. Got married in July of '83 downtown. My family came to the wedding. And our friends, our little – my little Jewish committee of friends that I'd met through Philip were there. Shelly's sister came, and Shelly's cousin came. But his parents were not there because his father chose to have an elective surgery that weekend. And then, we got our first apartment in the DePaul Lincoln Park area. We remained staying members of the upstairs minyan with Danny Leifer, Rabbi Leifer, that group. We loved it. We loved the upstairs minyan. It was easy when we were living in Lincoln Park to keep going back and forth between the upstairs minyan and Lincoln Park because it's not that far. But what happened was the first High Holidays after we got married, we received an invitation. I received an invitation to my in-laws' home, and it was going to be the first time I met them, period. Shelly and I had been dating for three years.
RH: And married.
JPR: And married, right. So, they invited me to Rosh Hashanah. And Rosalind, it was just like Shelly said, they were just open arms, they were – it was like I was their daughter-in-law. I didn't know what Rosh Hashanah was, barely. I had very little understanding of it. I just knew that we were sitting at a dinner table and that there was red wine in the glasses, and I spilled a glass of red wine on the white tablecloth. Everybody said, “Oh, don't worry about it, it happens every year.” And to this day, I still remember it because I was like, “Oh my God, here I am, this clumsy disabled shiksa – sick shiksa – comes into the room.” And that's the way I saw myself. So, I was stunned by how nice everybody was given the fact that they wouldn't come to my wedding. But they were really nice. And it was somewhere along the line they made the decision that once we got married, they were making that choice to accept me and Shelly.
RH: Maybe it's better that way.
JPR: What do you mean?
RH: In the sense that they made the choice. They had to make the conscious choice. They didn't have to tolerate or – at some point, they made a –
JPR: Yeah, they didn't put a face on. They didn't put a face on. They didn't just show up at the wedding. Well, that's so important for me to hear, and I appreciate that now, yeah. They had to make that choice.
RH: And they did.
JPR: Oh, I know what happened was when I talked to the Rabbi later on, and I said, “When do you think it would be best for our parents to meet one another, my family meet Shelly's family?” And he said that would be much easier after you have children. So now, this is where the two stories start coming together, the disability story and the Jewish story. We got married in '83. We continued through the upstairs minyan. I'm getting older, and I have this disability. I can't use my left hand. I'm not walking very well, and I don't drive any longer. I'm just starting to learn how to dress myself and cook and do things independently. Shelly's going to work every day. I'm finishing up classes. We start talking about having a child. The thought of having a child was very overwhelming because I was still learning how to become independent in my own activities of daily living. So you can imagine that taking on the responsibilities of an infant when you're just still learning how to take care of yourself becomes pretty awesome. But I'm getting older. I'm in my thirties. And if I don't try to get pregnant then I'm probably not going to get pregnant. And I wanted to have children. So, we got pregnant. And it's like 1987. So, I start thinking, “Well, how am I going to do this? How am I going to do this? Hw am I going to change a diaper with one hand? How am I going to get my kid around? I don't drive. How do I do this?” And my mother, when I get pregnant, starts getting a little concerned. My friends start saying, “Wow, raising kids is really hard for people with two hands.”
RH: That's helpful.
JPR: Yeah, exactly, I'm telling you. I'm telling you. Nothing about my journey has been easy, nothing. So yeah, exactly. I wasn't getting much positive reinforcement. But Shelly was always with me. Shelly always believed in me. Sheldon always believed in me, and he always believed in us. Always, always, always. Whether it was getting through the University of Chicago, finding the right rabbi, getting married, having his parents come around, he was my rock. So, I'm starting to get nervous about the fact that I really want to have this baby but don’t know how I'm going to do it because it's not like I just magically became able-bodied once I got married and got pregnant. So, I go back to RIC, and I start talking to my doctor, [a rehab] physician, lovely man, who I said, “Doctor, I really want to have a child,” and he says, “Wow, I really got to give you credit, a lot of able-bodied people would never do that.” And I said, “But I'm really nervous about my body and everything. Will I be able to carry a child?” And he said, “Oh, you're not going to have any problem carrying a child.” He says, “It's not like you're all of a sudden going to wake up and weigh twenty-five pounds more. It's going to be very gradual, and you're going to gradually gain the weight, and your body is going to just gradually adjust for it.” So I started thinking, “Wow, well, that's good to know.” “And you should have no problems having a vaginal delivery.” I thought, “Okay.” But you got to talk to the nurses about how your occupational therapy – taking care of the baby. So, I say fine. So, I go back to my nurses, and I ask them for assistance in resources and guides because they'd taught me everything else, and my therapists had taught me everything about cooking and dressing myself and rehabbing with the disabilities that I had. But the nurses told me that there were no resources [for mothers] because rehab medicine was still a new field. It was started after World War I or World War II, and all the veterans that it was started to serve were male. So, because rehab medicine was being run primarily by male physicians treating primarily male disabled patients, there was very little attention given to women. Well, this seemed pretty strange to me. And the other thing that was interesting was that outside of the war veterans, the demographics for trauma with regard to disabling trauma like brain injury like me or spinal cord injury favored men over women. In other words, that's not to say women didn't become – didn't have strokes or didn't have brain injury or didn't have spinal cord injury; it's just that demographically at the time, there were more men that were becoming disabled traumatically than – and they wrote this off to risk-taking because a lot of spinal cord injury and head injury was a result of violence and motor vehicle accidents, which primarily favored male risk takers. So, in addition to the fact that the field was started in reaction to treating male war-disabled vets and that medicine was primarily dominated by men at the time in the '60s or whatever, and that even the demographics traumatically were favoring men, that the women that were being seen were still in the pie of the demographics were a small group. And like all of medicine was treating – there wasn't that much gender-specific medicine, period. We know that today, that there wasn't that much gender-specific stuff. Men and women were treated with the same medications, we were treated the same, and the rehab setting was pretty much the same. But this seemed pretty strange to me because I knew my needs were very profound. And I wanted to just – all I wanted to do was meet other women who had disabilities and raised kids. I didn't even need a whole lot. I just wanted to talk to somebody that'd been through it. They couldn't connect me with anyone. So what the nurse said to me – and I'll never forget this. Winona Griggs was her name. She was director of nursing education at RIC at the time, and she said to me, “Well, Judy, when you write your book, come back and give it to us.” It was like good luck. Here's something for you to do. Which I don't think I was thinking seriously of at the time. But as I was going through the whole experience of pregnancy and then raising Lewis, my son, who I gave birth to in 1987, it occurred to me that there was just a real lack of knowledge in the health care setting, acute and rehab, about the needs of women with severe disabilities. I started trying to figure out why this was, and that's when I figured out this – I started learning about the history of rehab and the demographics and all that. But after I gave birth to Lewis, just as an aside, I will tell you it was exactly like the rabbi said; it was a cause of celebration on both sides of the family, and they came together, and they've been really close ever since, and our parents embraced each other, and Lewis, of course, was circumcised by Danny Leifer, my rabbi, in our home, and all that stuff. And that part started working out. But on the rehab disability side, the work was just starting. It was just beginning because I had to figure out how to do this whole mothering with a disability thing. I think we're going to have to take a break.
RH: Okay.
JPR: I just have to take a break.
[END OF PART 1]
[START OF PART 2]
RH: This is Rosalind Hinton interviewing Judy Panko Reis for the Women Who Dared program for the Jewish Women's Archive. This is Disc two, and today is February 7th, 2007.
JPR: March 7th.
RH: Oh, thank you, March 7th, 2007. We're at 513 Locust Avenue in Wilmette, Illinois. I think that's all I need to say. We'll just test this now. Judy, what I wanted to ask you about was the Jewish values that you feel are reflected and that you pull into your activism and that motivate your activism. And if you want to talk a little about that.
JPR: Can you give me some examples?
RH: Some examples? Well, is there anything in Jewish life that you feel – or in the construction or framework of tikkun olam that has made an impression on you in Judaism that you feel motivates your work?
JPR: Well, you have to understand that my work and my Judaism started evolving at the same time. So I didn't have the benefit of growing up with all of these inculcated Jewish experiences and values. It was as if my understanding and connection and appreciation of Judaism were developing at the same time my work was. So, they were parallel journeys. And at this point in time, looking back, I think the number one – and if there's Jewish concepts or values that you can help me put the label on because you're a little more familiar with the terminology than I am, that would help me. For example, I think the driving thing for me is that life is very precious and it's dignified. I think the dignity and the preciousness of human life is something that I learned through my connection with my husband, my former fiancé Philip, and my rabbis. I sense that that's a core. A lot of religions would say that they value life. But I tend to feel that the preciousness and dignity of human life is a specially critical driving value for me. Would you describe that as a Jewish value? I don't know if there's any kind of life –
RH: Well, let's not put a label on Jewishness. Why don't we talk about the values that you grew up with, the religious values that you grew up with that you feel –
JPR: Yeah, I would say the whole thing of – yeah, I would say the dignity that we have by virtue of our being human, and that human beings possess, and that I think all of life – I think the Jewishness, I will say, gave me a wider appreciation for the sacredness of all life. That's not something that I necessarily appreciated before I converted. I knew about it conceptually, but I would say that the interconnection of all life and the sacredness of all of this life as being so precious. I would say – and to help bring a – there's this thing about a society is measured by the way it treats its weakest members that I have – again, I don't know if there is a spiritual kind of concept with that. But I truly believe that I want to try to make a difference so that we as a society are not being irresponsible in the way that we are treating those who cannot advocate or do for themselves. By the way, I do promote this idea, and I support this idea, of self-determination, which means I really want to help facilitate people making their own decisions to the best that they can. So I see this as a very complex set of values because it's one where I want to make sure that we are elevating – or giving people the opportunities to elevate themselves or creating conditions to help elevate their dignity and their choices. So I'm especially struck by that.
RH: Tell me about your family. Are there any values that you feel you gained just from within your family that are motivating factors in your activism?
JPR: Well, my family is an extended family. I will say this – my in-laws, who were both – Gordon and Bertha Reis were born in Poland and were both Holocaust survivors in different ways. My father-in-law – his whole family was sent to a camp in Siberia during the war, and my mother-in-law actually had to flee Poland and live life disguised as a non-Jewish person and hide out in Russia, and it wasn't until after the war that they were able to find each other and connect in Germany and get married and then have their first child there. So, the thing is that my in-laws coming from this Holocaust experience made the whole experience of the Holocaust, the mass extermination, the objectification of humanity, because by – it was very concrete and very real for me; it wasn't just something in the history books. It just made me think of something that connects my family values with what you just said before. I think the disability work – one of the main things I've tried to do is make sure that we, as women with disabilities, were not objectified. Now women, in general, have been trying to get that message across, many women activists have, but I think it's been really, really hard for women with disabilities to not be treated as objects, and I think that when I came out of – when I had the privilege of getting connected with my husband's family and seeing the strength and the wisdom that my in-laws came through this experience, what they went through and how precious their Jewishness was to them, and how they valued life despite all of the travail, the persecution, and their family members were killed and died, it was a way for me, given the fact that I became disabled through violence, and it was just – let's say the reality of – I don't want this to sound dogmatic. There is a banality – there is an evil that is life-destroying, and that is objectifying of human beings as manifest in the Holocaust, as manifest by the people that murdered Philip and left me for dead, and yet, I think that the drive to ensure that human beings are not objectified, that we are not objects, that we have this inherent dignity, was just so alive for me, and so vital for me through the stories and the real-life experiences of my in-laws. I grew up with that in my own family, my biological family. My two grandmothers came from different European countries. They were both very poor and came to America, like a lot of European immigrants, to eat, to find food and shelter and clothing, which I don't think they were having a very easy time with. Their families basically sent them to the United States to find a better life. So I know there was a lot of struggle on both sides of Shelly's and my family dealing with persecution issues, dealing with poverty issues. There was always a sense on both sides that we all deserved better because we were humans and that we could transcend this objectification, this persecution, and that we were all – I would say the other thing is that we were all – one thing about the Catholicism that I think did help me is that as a Christian I was brought up that we all possess talents. The talent thing. But it's really true. Everybody has a core of skills, gifts, whatever you want to call them, talents, and these are ours to use to not only live a healthy and whole life for ourselves but to try to improve the conditions for others, the weakest in our society. I think the major thing that Judaism has brought to me through the family that I didn't really have as much in my previous religion is this whole notion of being a people and a community that has a long, long history. I think that sense of community in Judaism was a little bit different than the one that I had in the Catholic Church because the Catholic Church was very authoritative, and all the power was on the top. It went down. It was very patriarchal in that sense. When I came into Judaism – because I had never been involved in a religion that was bottom up, where the people actually had the power, so to speak, and that we as a people had these experiences like at Sinai where we had this encounter with this major spiritual or divine energy, this creative divine energy that gave us a moral code of how to live life with dignity, how to preserve, keep life sacred. That certainly helped inspire me to keep that sacredness and to advance it in any way I could with regard to the people with disabilities that I was working with in the center. So, that's, I know, a convoluted answer, but you'll get something out of it.
RH: No, it's a good answer. Why don't we talk about for a few minutes some of your role models and tell me who they are and –
JPR: Are you talking like in my life or like historically?
RH: In your life, I think.
JPR: Yeah. My mother was a very big role model for me because I think Mother was very active in standing up for what she believed both inside the house and outside the house, and she was one of the first women in her group of Catholic women friends to hold a job while her kids were going to school. She finished her college degree by taking TV classes at home so she could raise her kids. She was the president of the high school board and had to deal with a teachers' strike at the time that I was injured and in the rehab hospital. She was a very effective public speaker, and she loved the work she did. She loved being a teacher. She had a passion for her work. She was my first role model and most influential. I think I mentioned to you that when I was working in business, Mary Riebold was the first woman that taught me in the '70s that I certainly had the same abilities and potential as many of my male – I can't say they were counterparts, because they didn't consider me a counterpart – as the men that were pretty much running the organization. She opened my mind to new ways of thinking about myself within business and even outside of business. She helped me think about traveling more on my own independently. She helped me challenge the norms of society with regard to marriage. That was around when I was hanging out with her that I realized it was really important for me to make a change in my first marriage. Even though my husband really didn't care for that, it was a good thing. So she was very profound and still is. Later on, I've been deeply influenced by – this one person was very minor, but she led to a major influence, and I want to mention them both, and I don't mean to say that the minor person was minor. But she's a Jewish woman, and in a way, she opened up all these avenues for me, and I don't think she – until she reads this, I don't think she'll ever realize how much she opened up for me. Her name was Dr. Jerre Levy, J-E-R-R-E L-E-V-Y. She was a professor of biopsychology at the University of Chicago. She was one of the first prominent women brain scientists in the country, and she did a lot of research on the two hemispheres of the brain before I ever got to the University of Chicago. I got to know her through some of the philosophy classes I was taking. I was just newly injured. I was taking philosophy classes. I talked to my advisor at the U of C in the philosophy department and told him about my brain injury, and he said to me right away, “You've got to meet Jerre Levy.” Do you know who Jerre Levy is? Oh, she developed this great Nobel Prize work on the brain a few years ago. You got to meet her. So, here I am. I'm this relatively newly brain-injured-thirty-something-year-old graduate student, meaning I was much older than the graduate students at that time, and I am limping my way to the University of Chicago Biopsychology Department, introduced myself to her, and I was a nervous wreck. I was just a nervous wreck. The U of C is just such a daunting place to begin with, and as I mentioned to you before, the philosophy department at that time was all men. So there just weren't – I didn't really have at that time connections with any prominent women. So, he mentions her, and then he mentions the Nobel Prize for brain organization in the same sentence. I'm like, “Wow,” and he wants me to talk to her. So, I get over there. I introduce myself to her, and I tell her the whole story of Hawaii and my brain, and she's just like, “Wow.” She was just remarkable. She looked at me, and she said, “I just want you to know that you're going to be able to do anything you want to do and that the kind of injury you have shouldn't prevent you from leading a full life.” At that time, her main thing was she felt that it would be great for me to go into academia, to get a Ph.D., which wasn't my calling. But the fact that a woman of that stature, one of the few prominent women neuropsychology researchers in the country, actually saw me, a head-injured person, as having some potential to be productive in the world – it's very difficult again to convey to you. My self-esteem was at an all-time low level, and I certainly didn't know if I'd even be able to graduate from the University of Chicago, much less ever be able to have any potential with my brain injury. Brain injury is very, very difficult, because you really never know until you're out there living with your brain injury how it's going to affect the quality of your work, the quality of your relationships. So, that was the first thing she did for me, is she just in her own way gave me all sorts of affirmation with regard to – she always told me I had a very smart brain and that the brain itself was a very smart organ, and that it was – she always spoke to me in terms of brains, because that's what she did. But hey, it was like, somehow mysteriously, I found this great woman brain researcher, and it was very, very powerful for me. Then I took a class with her, and I had a hard time in the class, but I got through it. As I went through the class, it was becoming clear to me that I was having a lot of emotional and psychological issues as a result of – I didn't know whether it was the brain injury. I didn't know if it was the violence. She was the only person I knew to really talk to, to see if I could get some help. So I talked to her, and I said I'm really having a lot of problems here, and I know you're not a psychologist, but not every psychologist is going to understand how the right hemisphere of the brain works when it's been injured like my right hemisphere has been injured. So, I want to know if you know anybody that could work with me in a clinical setting to help me deal with all of this emotional trauma I'm going through. And she said to me, unfortunately, at that time – it was like I kept running into all these brick walls, just like what I got trying to have my baby – they didn't have any resources for disabled moms at the time. She said there are very few people that really know that much about the right hemisphere of the brain. We're still learning about it. And of those of us that know about the right hemisphere of the brain, there are just like maybe five people in the country that are doing – at that time. This was 1983 – doing clinical psychology. But she says I have a graduate student on staff who's doing training with me, and she is mostly interested in child psychology and development psychology and the right hemisphere of the brain. “I'll introduce you to her. I don't know if she would take you on. But you're really desperate.” So she introduced me to her star graduate student, who turned out to be Dr. Wendy Heller. As it turns out, Wendy and I have been in a therapeutic relationship ever since 1983 to today. Wendy turned out also to be – so, we were both graduate students at the University of Chicago when we met one another. She was a Ph.D. candidate in the biopsychology department, and I was a graduate student in the philosophy department. I was studying philosophy of mind at that time. I was very interested in philosophy of mind. That's why I was mainly at the University of Chicago at that time. So, Wendy turned out to be this international researcher on brain – on anxiety, that's one of her areas, is emotions, anxiety, and the functioning of the right hemisphere of the brain. She might describe herself differently, but that's the way I was perceiving her at the time. We can always correct that. But she is a profound influence on me because so much of my accomplishments post-injury were a result of the work that she and I did in therapy. Even having the baby. All that. So I would say that Jerre had less of a role, but she was so affirming to me, and she had such prestige, and talk about smart; this woman is brilliant. Just google her. And the fact that she just took that personal time with me and had so much belief in me and then, even more invaluable to me, introduced me to Wendy. Wendy actually took the time to start seeing me as a patient in a therapeutic setting while we were both students at the U of C. We would meet in classrooms. We would meet in classrooms. It was through my therapy with Wendy that I made the decision to have my baby and go through all of – and dealt with all my transportation problems, made a decision to go to Northwestern University as a way to get myself back mainstreamed into the workplace. Dealt with the shape – I didn't have a job at the time when I was at the University of Chicago. I was just starting to learn to get comfortable with myself. I was starting to – a lot of people say accept your disability, and I don't like that term. It wasn't accepting the disability. It was actually trying to understand how I could use my pre-injured talents and skills and experience in a way to shape and build a new meaningful career for myself. I was starting from scratch, really. Because I couldn't even get around. I was barely walking. I wasn't able to drive. I couldn't get on buses. I couldn't get on trains. So how do you get – how do you even think of yourself as in the workplace when you can't even get from place to place either by walking or by public transportation or driving? So we negotiated a lot of these issues through therapy, and Wendy was a very spiritual person and always brought a spiritual dimension to our therapy in a very non-directive way. What I'm saying is she never gave me spiritual terms or an ideology, but she often, I think, imbued in me that there were parts of myself that were capable of more – that I had a spiritual connection to a larger whole, and this was, as I say, coinciding with the time – I was starting to see Wendy right after I had started meeting with Rabbi Leifer at the University of Chicago to start my conversion. So, as we went through therapy, it was as if we basically were shaping this new post-injured career for me, and it was not anything that we had a vision of; it was something that came in pieces, whether it was – when I started doing advocacy for transportation it wasn't because I thought I was going to be a transportation advocate or I was going to be a disability advocate, but we just kept working through problems and barriers that I kept encountering, and every time I encountered one – maybe a new opportunity would open up to do something new, to start writing about it, like I started writing about women's issues. I was in therapy. I started getting the confidence to do writing about disabled women's issues. I wrote my first magazine called Creative Woman. I got the nerve to start taking on the transportation system when they threw me off the transportation system, and they wouldn't take my kid around because he wasn't disabled. All that stuff is really, really hard stuff, and it's very frustrating, particularly when you don't have a sense of entitlement, and you've been, as I say, dehumanized; you've been objectified by the system. The other thing about Wendy – she knew about the brain. She knew about the complexity of the brain. She was a brain researcher. She knew a lot about neuropsychology and neurobiology, and so I had a lot of trust in her. I felt that she gave me a lot of tips on how to manage some of the difficulties of brain injury. So, Wendy Heller is –
RH: I'm curious, with a brain injury – I guess I'm trying to figure out what the challenges with a brain injury are and an emotional – and maybe even sorting through what's the injury, what's the trauma?
JPR: Yeah, it's real hard. It's really, really hard. This is some of – by the way, this is one of the things I'm very interested in in terms of working with people that come back from Iraq because there are so many brain injuries. It's like this. I am not a researcher, and I'm not a clinician, but I can talk to you from a community service and a community activist point of view and a person that's been living with a traumatic brain injury that's resulting from violence. It gets very difficult to untangle. For example, the effects of a brain injury may result in some kind of hyper-emotional reaction to something. Trying to think of a good example. You may have an exaggerated emotional response. Like right after my injury, I used to have to sleep with the covers over my head because it was very scary for me. I had enormous amounts of fear. And some of it was specific, like I thought that somebody was going to come and hurt me. But then there was also this generalized anxiety. And this generalized anxiety – how do you know that the generalized anxiety isn't a function of your right brain being pulverized, which is what happened to me? Or how do you know that that general anxiety that you're walking around with isn't a combination of a pulverized right brain with the very real effects of having your fiancé murdered at your side and you being left for dead? And the combination – you're never going to really be able to totally untangle. But I think it was in therapy that we were able to start identifying, first of all, that there even was such a thing as PTSD [post-traumatic stress disorder] at that time. It wasn't as popular. It wasn't as well known in the psychological setting in 1983. Post-traumatic stress syndrome was just beginning to – there was very little understanding of it. It took us, for example, I'd say, four years into therapy – this was how long. It took us four years of therapy to understand that I psychologically was still in the tent with Philip, that I didn't feel like I could leave him. My memory – there was this part of me that was always there with him. Then once we figured that out – it took us a long time to figure that out – we realized that that was a very common experience of somebody – for example, if you're a soldier and you're on a battlefield, and your buddy dies, it becomes very difficult for that soldier to psychologically disassociate from his buddy. You may walk around for the rest of your life with that buddy with you. It took us, as I say, maybe four or five years. I don't even remember how long. It did not happen within the first two years of therapy. Took us a really long time to understand that there was a part of me that was still in that tent and that for me to psychologically come out of that tent would have somehow made me feel like I was abandoning him. Then, we had this whole survivor guilt thing where you have to feel like, “Wow, I'm going on with my life.” And yet that is very complicated, too, because with the first year of the injury, I thought that Philip got the better end of the deal. I thought that he had gotten the better end by just dying. He didn't have to live with the pulverized brain and limited vision and a loss of independence and self-respect and having my hair shaved off and my teeth knocked out and my eyes all black. So at the beginning, I felt – so we had to work through all that stuff in therapy. It became clear in therapy that the inability for me to psychologically detach myself from his corpse inside that tent was a form of post-traumatic stress syndrome that was very common in random violent injuries of people that were close. It also opened up other things like survivor's guilt and all that kind of thing. And those are classic symptoms, but they don't come out right away. It wasn't like she had them in her mind and said, “Oh, well, you're experiencing that.” It was more like we had to just keep digging into my feelings and my experiences to uncover that these were getting me stuck, and they weren't allowing me to move forward emotionally. I think the main feeling we were working with, I'd say, within the first six or seven years of therapy was fear. And my terror. And it was just terror. And it's not easy to identify where all that comes from. Because I'm in a very hostile society anyhow. I'm in a hostile society that doesn't really want to recognize people with disabilities. They don't care how you got hurt. And with every inch of my rehab, even though people were nice to me, [the world] wasn't designed for me. I had to go and fight for transportation. I had to go and fight for resources to become a mother, and so that in itself would tell you that there's another good source of anxiety, this legitimate anxiety with just living life with a disability is going to create major stress and anxiety in your life every day. So you've got that factor. Then you have the anxiety and stress from being a violence survivor, for having murder in your life, and then you have all this extra anxiety that comes from actually being a right hemisphere injured person that is less seen in people with left hemisphere injuries. So, people with left hemisphere injuries have different sorts of sequelae, but right hemisphere injury happens to be the emotional side of the brain. So, it really took an expert like – that's why I went to Dr. Levy to recommend someone because I knew that it wasn't going to be easy. Everybody was going to have a different take on how to work with me. But I really wanted to work with a woman. I wanted to work with somebody that was sensitive to women's issues. I wanted to work with somebody that even maybe had some understanding of gender-specific issues with brain organization, which there's some literature on but not a ton. But Jerre and Wendy were interested in gender-specific stuff. So, to answer your question, it's an art, not a science; you're not going to get a clean take. But once you start uncovering those different dimensions and layers, you get a better understanding of yourself, and then the better understanding – and that's where the marriage between therapy and spirituality and Judaism come together. Wendy helped me identify – she never used this term, but there was a point in our therapy where to deal with the ongoing terror, anxiety, and fear that I was living with, we started – she wanted me to start thinking about spiritual forces in my life. I started reading literature, and I read She Who Dwells Within, is that it? Do you know that book?
RH: I do.
JPR: Yeah. So, it was through my therapy. She didn't recommend that book. She just said, “Judy, I want you to start looking into – I want you to start thinking about those feminine divine forces that you feel somehow are inside of you.” And I think somebody had given me this book, and I thought, well, I have this book, She Who Dwells Within. I started reading this book – and again I was a newcomer to Judaism. I was really taken. It really resonated with me, and this whole concept of Shekhinah was really profound to me. It spoke to me because of the work I was doing. So, it was the other way around. It was more like – it wasn't like my knowledge and acquaintance with Shekhinah influenced my work; it was more like my work led me to get connected with the Shekhinah, get it? So, it was the other way around.
RH: Yeah. Yeah, so, tell me about the concept and why that became such a powerful image to you.
JPR: I would like to get the book. I have it. Yeah, it's upstairs. I'd like to just take a break and get the book. It was so profound for me. I knew there was this big connection with Jewish women's values, at least from my – but sometimes it takes a while. Particularly with brain injury. To connect it all.
RH: Well, and this concept of Shekhinah, it makes so much sense if you're trying to find your own power.
JPR: Yeah, and we had to. We had to. I was just such a staunch feminist. When I say staunch feminist, it was like I really didn't want – I came from this male-dominated Catholic Church, and then I went through that whole thing with the [church]. So there was no way I was going to give my power away to a male force inside of me, and it wasn't that I hated men; I just wasn't really – given my experience, I had learned enough in business as a female that I could empower myself, and that I could be respected, and I could have power in business, and I did. I think, as I said, business was very fruitful for me there. I ended up being very marketable in business, and so I at least had that affirmation. But once it came to the spiritual thing, I knew that I was not going to have this male God thing inside me, and I wasn't going to be worshiping this all-male deity thing; it just wasn't going to work for me. There was no way, no how. So I found this book, and it was like she – see, that's the way she worked. She never came up with these ideas. She would just say, “I want you to give some thought about this, and I want you to start finding – I want you to think about these forces inside of you and what they feel like and what they might look like or what they might – and then I want you to start coming back, and we can talk about it. And let's see if you can come up with a name for this divine energy. Let's see if you can come up with a name.” So with never her telling me, it was just her guiding me. That's why she's huge, huge, huge, huge, huge. Our therapy. It turned out that she and her partner MJ had gone to try to find this woman rabbi when they wanted to get married in New Mexico because people weren't doing same-gender marriages. I don't know that they ever connected with her. But it all connected together in a way. You know how things are like that. So she was like, “Oh, I know her. We actually tried to contact her.” But see, Shekhinah is a being who connects all life. Gosh, I'm so glad I'm revisiting this, yeah. One of the profound things about this book was that it gave me the permission as a Jewish woman to make up my own prayers. Coming from a very strict Catholic background and then coming in as a newcomer, when you're a newcomer, there's everything in place, and who are you to mess with it, right? So, I realized that there was a lot of give, at least in the way I was looking at it. I'm not obviously coming from Philip Wolsk's family of Hasidism and Orthodoxy. But in this, it really – the Shekhinah is described as being the catalyst of our passion. She's viewed as cosmic and interconnecting, like this almost implicit interconnector of all things, this longing for wholeness. It's that divine energy that brings the wholeness and the healing, birth of a new vision of whole woman to our time – the quest of wholeness of being. So, there's this whole sense of becoming whole. When I mean whole, I don't mean non-disabled, I don't have a problem living with a disability. It's just that I want to be able to feel like I'm a whole person living with a disability. So, it's very important that you can get that sense of wholeness without quote, unquote becoming the dominant norm, that there is such a thing as being normal and having a disability. It's just that disability is a new normal. It's a new normal way. I think the Shekhinah, this book really helped me understand a lot of what I was doing with women with disabilities in a larger spiritual, more cosmic context, where I could actually feel that this energy was not only inside of me, but it was also outside of me, and part of a larger whole manifested in the spark of every human being or every part of life that I was interacting with. So, it gave me a spiritual feminist context to start looking at the work that I had been doing and that I was continuing to do with girls and women. And my department is one of the most diverse departments in the hospital. In other words, I have – the majority of my staff is wheelchair users. I've got African-American, Latina women, and Caucasian women. And that mirrors pretty much the population of women we service. We're multiracial, multicultural, and multi-disability. There are women with all different kinds of disabilities – sensory disabilities, physical disabilities. So, the diversity, and the Shekhinah aspect of being so diverse, so non-dominant white male norm kind of a thing, and yet having so much passion and this organic connection to life. It's really vital for me in my healing but also in the work that I was doing with the women and girls, who, again, the women and girls I'm working with are not looking to become nondisabled. What they're looking to do is be part of a – develop self-determination, self-esteem, be part of a community that they can take pride in, whether it's the disabled women's community or whatever. I don't know enough about the Shekhinah to go into depth about it. But Wendy, my therapist, really opened these kinds of avenues for me. And then what ended up happening after that was that my rebbetzin, who just passed away, who also – I didn't know her as a faculty member, but she was on the faculty of the University of Chicago Divinity School. Her name is Professor Tikva Frymer-Kensky. She was a scholar [of] the Bible, but particularly her fascination was Jewish women in the Bible. So the fact that she was at my synagogue here in Wilmette, and that she was my rebbetzin, and she happened to develop a disability that caused her to start using a wheelchair – so, she started seeking me out. She and I became confidantes to one another, and she would come over here and sit where you're sitting right now, and we would talk about ways to maybe make her transportation easier for her to get from Wilmette down to the University of Chicago or ways that it might be easier for her in her house to negotiate her house, which wasn't always that accessible, or her personal care. And then we would talk about that stuff for her from my point of view, and then I would talk to her about Shekhinah and Kabbalah, which I didn't know anything about. But the feminist aspect of the One and thinking about mystical female divine energies – so, I would say that she was another role model for me. Actually, she was a more recent one. The story I just have to tell about her – and this relates to one other role model of mine – is that she ended up, as I said, dying this past – I think it was August or September. I'll have to correct that, but we had – we grew up in such different backgrounds. I grew up with this Catholic background, and she grew up in this very Jewish household in New York, marrying a rabbi, and becoming this great Jewish woman scholar. And yet there was just a vital energy connection between us. I could tell that when she would talk to me, sometimes she talked to me about fashion, and I knew she never talked to other people about that – I just knew it – and makeup. In fact, people would be surprised. But she just had – we just had this similar spirit. Not that I'm big on fashion and makeup, but it was like she felt comfortable talking to me about it. I think because of the disabilities, people often – they don't think about – they always say – I think that it even became harder for her because she gained some weight, and I think the combination of the weight and the breast cancer and then losing her ability to walk – it becomes really hard for you to feel good about the way you look and how you feel and how you take care of yourself. So, we used to talk about that when she'd bring it up. Then, I'd talk to her about Shekhinah. So, right before she died – I might have mentioned this before, but I want to mention it because it's really important. She was starting to fail, and she was using a wheelchair pretty regularly when I would go to services. I'd say, “Tikva, come on. You're going to go to the dinner dance.” The dinner dance was just – it's just a regular old dance with – I mean, just dinner with music they use for a fundraiser at the synagogue. I hadn't really gone to them, but I really wanted her to get out. And I said, “Tikva, let's go.” I said, “You're going to come out to the dinner dance.” I think I had a feeling she might not be around real long. But I worked with women like this all the time downtown and in the city. So, it was just unique to be working with it in such an intimately spiritual environment like my synagogue with my Rebbetzin who has this, again, almost a Jerre Levy kind of reputation in her academic field. So we went to the dinner dance, and she was there in her wheelchair, and I had my scooter. I said, “Now, you're going to dance with me, right?” And she was like, “Yeah, okay, okay.” So, the dinner dance was going along, and then somewhere along the line, I scooted over to her, and I said, “Come on, let's get out on the dance floor.” And I finally got her out. First, she was really, really hesitant. And she got out, and what was cool is that the band that they had was a live band, so it wasn't just like a DJ or something. They started playing Aretha Franklin. This was great. This was so good, Rosalind. It was so cool because the singer was an African-American woman, real R&B person. So, it was like an R&B band. It was a cool dinner dance, I'm telling you. It was really cool. It's not like the kind our parents used to go to. So, they started playing Aretha Franklin’s “R-E-S-P-E-C-T,” and Tikva and I are out in our wheelchairs, and we're dancing to R-E-S-P-E-C-T, and we're sitting in our chairs, we're just dancing – wheelchair dancing. Before I know it, the whole place has come out to dance around us and to dance with us. Like, all the people were coming up. It was fun at the time. It was really, really fun. But when she died, the synagogue was packed. It was packed. It was packed because of her prominence as this divinity school scholar, all these books she had written, and all this stuff. And it was standing-room only. There were rabbis and scholars and community and friends and family that had come in from all over the country. And Rabbi Kensky, our senior rabbi, and Rabbi Mishkin got up, and in their remarks celebrating her life, each one of them mentioned our dancing. Rabbi Kensky just said something like, “And if Tikva wasn't out on the dance floor dancing in her wheelchair with Judy Reis.” But Rabbi Mishkin got up and went on and said, “Aretha Franklin R-E-S-P-E-C-T,” and I looked around, and I thought, “Wow, I've come a long way.” It was like one of those moments where I think about all the people that were turning me away, the really hard path I had, trying with Philip's parents, with Shelly's parents, with the rabbis that were saying they were going to convert me and then telling me not to. All of a sudden, it's like one of these moments, like one of these made-for-TV movies where you cut from me being this beleaguered traveler to having these rabbis up on the pulpit speaking to this standing-room-only audience about Tikva and me out there in our wheelchairs dancing to Aretha Franklin. It was remarkable. It was just remarkable. It was like Shekhinah because she was so into women, and she just had this immediate gravity towards me. When she first saw me in my scooter she said, “Wow, that's a really nice-looking scooter.” And that tells you just something about her. She's very bright and very kind, and she was very patient with me because she knew I didn't know too much. So she sometimes spent time with me. It was one of those mutually reinforcing things. I have one other person that's really important that we have to mention. So, I talked to you about Tikva, talked to you about Wendy. Actually, two. One is my husband, which I'll talk about separately. But there's another woman, and her name is Ginger Lane. I want to mention her. Ginger Lane is my best friend, and I didn't know her before my injury. I met Ginger Lane about maybe seven years post-injury when we were both asked to give talks to nurses in training or social workers in training at the rehab – at RIC about sexuality and disability. I didn't know that many other disabled people at that time. I was still in my own little world. I don't think I'd really gotten involved in transportation advocacy. I can't remember. But when I met Ginger, I wasn't an activist. And she was a quadriplegic. She had recently become – spinal cord injury that was a result of a skiing incident. She broke her neck. She was a mom, and she had several kids, and even though our disabilities were really, really different, the fact that we'd both acquired them later in life – and she was very kind to me. She and I got to talk to each other, and long story short, when I was on my quest for females – for resources for becoming a mother and when I started writing my magazine Creative Woman, I remembered Ginger, and I got back in touch with Ginger, and got her – I think I got one of the writers on my magazine Creative Woman to write a story about Ginger because Ginger was a choreographer by – she was a Chicago choreographer. She used to do shows, like Shubert Theater and all that. She was a professional choreographer. So after her injury, she'd had a variety of mixed encounters trying to be a choreographer from a wheelchair. You can imagine, right? People weren't too enthused about it. But she became a wheelchair dancer, and she also was very interested in women's issues. So, at the time that we started talking about getting women organized, disabled women organized at the rehab hospital, at RIC, Ginger Lane and Marca Bristo, who was another wheelchair user that played a large role in helping us start the Women's Center, and I were the three dominant disabled women working with the doctors to start the Women's Center. So I became very close to Ginger. She lived in Highland Park. I lived in Wilmette. When I first met her, I was not using a wheelchair. I was limping along with my leg brace and my cane. She and I got to know each other pretty well as we started thinking about getting involved and starting the Women's Center and really started off working around parenting issues and trying to get resources for mothers or people that wanted to be mothers, and that was the immediate need, and getting OB/GYN resources and clinical services that were disability-friendly because women had been getting turned away from services. So Ginger became my closest ally in terms of being a recently injured disabled woman. That part was similar. Even though we didn't know each other beforehand, we just had again a very kindred spirit – and the fact that we lived both in the suburbs. The thing about Ginger is she drove, and I didn't. She had a lift on her van, so she could drive me around. But she had this – she was the first woman I met that there was no obstacle. Whatever Ginger wanted to do, she was going to do from her wheelchair. So, she became a member of the – what's the ballet that's coming to Chicago? She's a member of the dance troupe. She's the one in the wheelchair. It was in New York, and then it came to Chicago. I'll think of it.
RH: Joffrey?
JPR: Joffrey, yeah. She's a member of the Joffrey Ballet now as a wheelchair user. So, Ginger wanted to dance. Ginger started organizing wheelchair dancing here in Chicago and became a member of – she got wheelchair dancing incorporated into the Joffrey Ballet here in Chicago. As I said, she was a vital woman and influence in helping us organize the center. And it so happened that Ginger was Jewish. And again, I didn't – as I said, these are parallel journeys. I was starting to learn about Jewish people. And even though Ginger would not identify herself as a practicing Jew per se, she had a very strong heritage as being Jewish because she also is a Holocaust survivor. And one day, we were in Washington, DC. Ginger and I were there for a disability conference. Her brother Alphonse lived in DC, and she said, “Judy, have you ever been to the Holocaust Museum,” and I said no, “I've never been there.” And she said, “Alphonse and I will take you.” And I said, “Oh, okay.” So, Ginger's in her wheelchair, I'm in my wheelchair, and we go to the Holocaust Museum. When we get in there, they immediately take me over and show me their picture because they were children that had been smuggled out of Germany during the war. Their mom was killed by the Nazis, and they ended up – there were several of them, and then they got split up. The family got split up, and Ginger was adopted by a family here in Chicago. It took her many, many years to find her siblings and get reunited with them. So, I started – it was like another one of those moments that were really, really critical for me where the disability and the Judaism were coming together. Because I knew my in-laws' story and their history. But the reality and the horror was deepening as I realized what had happened to Ginger's mom, that Ginger had come here at the age of six because people were kind enough to smuggle her out of the country, she and her siblings, and that she – and so even though she wasn't like one of these synagogue-going people, she had this whole other dimension to her, and I actually got her involved – and I was trying to get my synagogue more accessible. I brought Ginger in because Ginger's a very, very active disability rights activist. In addition to helping me start the Women's Center – and she's still extremely involved in the Women's Center – and becoming my best friend, she was one of my mentors. When I had my baby, even though she had already had her kids, I turned to her to ask her about the challenges I was facing, dealing with teachers that I felt were disregarding me because I had a disability, or barriers that I was encountering just to get in and out of Lewis's schools. You just need a lot of support because it's just really hard. So, I was on the phone with Ginger every other day about whether it was a parenting issue. When I met her, I was not using a scooter, and it was my affiliation with Ginger that actually allowed me to give myself permission when the doctor recommended for me to start using a scooter that allowed me to use the scooter. I saw the scooter as a freeing, as something that would give me more independence. It allowed me to do more things independently rather than this label that was going to objectify me. So, it was through Ginger that I was able to start – all that energy that I was able to impart to Tikva, for example, that's the kind of thing that Ginger was giving to me. So, it's a snowball effect. So, it's like it started with Ginger, and then I could pass it on to Tikva or the girls in my programs or the domestic violence victims that I was working with. So, we all have these people that have energized us, like Wendy Heller, Jerre Levy, Mary Riebold. Ginger was my primary. The fact that she happened to be Jewish and the fact that I had never gone to the Holocaust Museum, and the fact that I would have the honor of going into the Holocaust Museum for the first time in my entire life with Holocaust survivors was just blowing me away. It's remarkable. It was remarkable. It would have been an overwhelming and awesome experience without going in with them but going in with them – and both of us in our wheelchairs. It was just, again, one of those just really crystal moments of being a Jewish disabled woman being with another Jewish disabled woman that almost defies words. So, I wanted to make sure you knew about Wendy, Ginger, Jerre Levy, and the other person I wanted to talk about as a profound role model for me has been the best person in my entire life, and that is my husband Shelly. He's my lover, my partner, and I call him my equalizer. Because I tell you, I live with a lot of fear, and I live with a lot of anxiety, and I live with a lot of stress. And some of it's because of my past, and some of it's because I'm fighting freaking battles every single day just to get out the door and to get to and from work every day, and I'm working with people that are fighting even worse battles. So, I really rely on him, and he is a mensch. He's a very gentle soul. He's a very wise person. He gives me a lot of space, and I feel that he always – he describes me as his energizer, and I describe him as my equalizer because, without him, I feel like I would be shrieking or depressed or unable to really galvanize the resources, both in terms of people and services and funding and whatever I need to do to advance the cause of our work. It's vital for me to have his patience, his love, his understanding. He gives me an enormous amount of space. Enormous amount of space. I really shy away from saying he's always believed in me because it's such a cliche thing to say. But he was with me at my bedside when I came back from Hawaii. He was with me before I left for Hawaii. And whether it was my insecurities in getting into and through the University of Chicago – “Judy, you've got it. You can do it. You're going to make it happen. There's no doubt in my mind.” Or thinking about trying to create a new career from scratch. Having a baby, getting the baby around when I was not walking or driving. Whatever it was, we were going to find a way to do it, even if – and more often than not, it wasn't a conventional way. So he thinks outside the box, and what's been great is that his Jewishness was always a very firm background to him. It was not upfront, and it wasn't until I started on my journey getting connected with Rabbi Leifer at the University of Chicago or Rabbi Kensky, and Rabbi Mishkin here at Beth Hillel did he start getting involved in Judaism. It was through me that he started becoming more active because of my thirst for learning more and trying to explore these other dimensions of myself in the synagogue. So these are people that I definitely would not be sitting here talking to you today about these accomplishments and these connections if it wasn't for my mother, Mary Riebold, Ginger Lane, Wendy Heller, Jerre Levy, Shelly Reis. These are the prominent ones. Dr. Kristi Kirschner is my physician, and as I said, she and Susan Rayner were the two women doctors we worked with. And Kristi is another one who always had an unbounded vision of my capabilities. Happens to be the director of the Disability Ethics Center at RIC, so she has a strong commitment to ethics. She has a spiritual side to her too. So I've just been – I guess I've been at some level not even consciously knowing it – I've always gravitated towards women that have a very strong sense of themselves, women who are always interested in pushing the edges of the envelope and thinking outside of the box, and women who just have that real passion of divine energy and knowing that we can do more than we ever think we could. So, those are the main people.
RH: People in your life. Why don't we talk now about your activism? And tell me about that journey and how you got into it. Here. You want me to pour you some more coffee? Do you want to heat it up?
JPR: Yeah, maybe we should. Yeah, I'm okay right now. I'm really glad. This is like – have you read this?
RH: No, but I know the book. I know the book, but I've never read it.
JPR: I don't know. You know how sometimes you just have to read it at the right time in your life? It was just one of those fits. Probably when it was given to me, I looked at it and said, “Okay, this looks interesting.” But until we were at that part in the therapy when she says, “I want you to do some work,” because every now and then, she'd give me assignments. When she said, “I want you to find that source in yourself, that spiritual center in yourself, and find a name for it,” I thought, “How am I going to do this?”
RH: Really quite an insight too. So how did the activism start? What's the path of that?
JPR: It mainly started with transportation. The main thing about transportation was that I had been – because the trains and buses in the city of Chicago were not accessible. They had set up these door-to-door services, and I was living in the city at the time. I was not in Wilmette. We had just bought a house in Wilmette because we had had a baby. We put like ten or fifteen thousand down on the house with the expectation that I would have this door-to-door service to take me from Wilmette back into the city if I needed to get my baby back to the doctor or I needed to get back down to the hospital. And one day, I got a call. Actually, I think I was taking classes at DePaul University down in Lincoln Park at the time because we were living in DePaul – we were living on Racine and Webster, or Racine and Belden. Same area. And I got this call, and it was from some person from Metra, who had been paying for this door-to-door service, and saying that as of July 1st, I was no longer eligible for using the door-to-door services as a disabled person because I didn't use a wheelchair. Because I had a leg brace and a cane. And I thought – I couldn't believe this. I was in shock. I was in total shock. Somebody would just arbitrarily throw me off of the service when I couldn't get on the train, I couldn't get on the bus, I had a new baby, and I'd already paid all this money to buy a house in Wilmette with the understanding that I had the service that was going to get me – an accessible service that was going to get me back into the city. So, I went into this major funk, and my husband, my energizer at that moment, said, “Judy, I can't believe you're just like taking this.” I remember this, Rosalind. But see what happens is you're so beaten down. You're so beaten down. You're just so beaten down. It’s not like you have any energy, and I didn't know Ginger Lane at the time, and I didn't know Dr. Kirschner, and I wasn't that connected with Wendy. I really wasn't connected to the disability rights movement. I just wasn't anything. I was just by myself. I was just trying to get myself dressed and get food on the table for my kid and my husband every day and take a few classes. That's all I was trying to do. And they're throwing me off of the transportation. Shelly said, “I can't believe you're just going to let this go.” And I got really angry. I got really angry at him. What do you mean? Like, what can I do? What can I do? It's like literally fighting City Hall. What can I do? So, I guess I started thinking about it, and I thought, “Well, okay.” So, I started writing letters, and I wrote to state representatives and senators at the time. And to my shock, I actually got responses, but they all said they couldn't do anything except for one guy. I'll tell you about him. But they all just were like, “Well, thank you for – and it became real clear to me that it was like Casablanca, the trouble of two little people doesn't amount to the hill of beans, was like, who am I? I'm just like one little person who's writing my congressman. I got a letter back from Sidney Yates, who was my congressman in the city of Chicago. He actually did put in a call to Metra, and he actually – or he put in a letter to the – he wrote a letter to the executive director of Metra, and he passed the response back to me. And the letter, Rosalind, said that Metra was not responsible for getting – it was not a social service agency, and it did not have an obligation to provide social services. That the disabled folks that wanted services should go to their social workers. And I thought, “Wow, this is weird.” Here I am, a taxpayer with a kid, trying to get back into the workplace. How am I going to get around? How am I going to do anything? And these other senators were just giving me lip service. But Yates at least did something. But what he did was very revealing. He went to the top of Metra, and the guy writes this asshole letter. It was just so – talk about objectifying and dehumanizing. It was my first experience really, really of having an entire bureaucracy, an entire system that was funded both by the city of Chicago and the US government, basically say, “Screw you, we're not a social service agency, and we want to kick you off of this service because you don't use a wheelchair, you and millions of others. We're going to keep doing it to you. We're bigger than you are.” And I was like, “Wow.” Plus, I spent all this money on this house, and once you put fifteen thousand on a house, try to get it back. I had this commitment to live out here. But I was terrified of being one of these people that was going to be stranded out in the suburbs. It was just like, “Oh my God.” So I remembered from my inpatient days at the Rehabilitation Institute that they had a few – a small group of disability activists from Access Living come to visit each of the patient rooms when we were newly injured. At the time that they visit you, you don't really see yourself as disabled. Because you think you're going to get better and walk, and you get this impression that once you leave the rehab hospital you're going to be back to the way you were beforehand. When in reality, once you leave the rehab hospital, the problems are just starting to begin because you're almost in this little bubble when you're in the rehab hospital. The place is accessible. People treat you nice. But that's not reality. It's like when you get out. It's just like these vets coming back. Forget it, man. They're not going to have housing, they're not going to have jobs, they're not going to have – they're going to have a real hard time. You talk about all the squalor in Walter Reed right now; it's nothing compared to how hard their lives are going to be. It's just going to be hard. Once you get out, for as much as you hate being in that hospital, it's a zillion times worse, because nobody is – they start being kind to you for a while. But the reality is it's hard. So I'm thinking, “Man, I remembered that these disability activists came to my room, and I couldn't relate to them at the time because as far as I was concerned that was their thing and not mine.” But I called over to Access Living, which was this independent living center – profound influence in my life. If there was one organization that profoundly enabled me other than the Rehabilitation Institute of Chicago, it was Access Living. Called over to Access Living, and I talked to a gentleman. Unfortunately, I don't remember his name. But he was blind. And I said to him, “I've just gotten thrown off transportation. I'm committed to buying this house in the suburbs. I'm a mom. And I got to get around. I got to get my kid to the doctor back into the city, and I've got to get downtown. I've got to see Wendy down at the University of Chicago. I got to get around. And plus, how am I ever going to get a job if I can't get around?” So, he said to me we have a group that's organizing here around the Metra issues, the people that have been thrown off the transportation. He says, “Why don't you come to this meeting?” Of course, I didn't have a way to get to the meeting, right? Because there was no transportation for me. So I found somebody to drive me, and they drove me down to Access Living, and I went into this meeting, and I was blown away. There were maybe about eight or ten people there, all severely disabled. Some of them extremely spastic. Some of them nonverbal. Some of them with a lot of involuntary jerking of their bodies and drooling and all that. And it horrified me. It was like, “Is this what I've been reduced to?” That was my first reaction. Is this what I've been reduced to? It was like everything I think I'd been trying to avoid. It was like it was all conspiring. Whether it was I was just – up until this point, I was still like – I pretty much had this pre-injured Judy in my mind, the successful businesswoman that was traveling all over the country by herself, who had competing employers, just an easy time in my life before my injury. So I'm like, “Wow, is this what I could be reduced down to?” It horrified me. It just horrified me. I didn't see myself in this group. I saw myself outside of it and above it. It's a very honest thing to tell you because I actually got over that. But in all honesty, it was a very scary and humbling experience all at the same time. And I thought – and I'm looking at these folks, and I'm thinking, “How are they ever going to do it?” It's like, “This is what you're talking about, to get me transportation. These people can't even roll themselves, they can't even talk, they can't even move. And so I'm like, “Well, okay, so they welcomed me.” And they were just happy that I was there. So long story short – turns out that there were three women in that group other than me that lived in the suburbs that had been thrown off the transportation. One of them was Sharon Lamp. She lived in Des Plaines. Another woman was Paula, who lived in the city and was a single mom, African-American, trying to get to her job in Highland Park to support her and her kids. And Sharon in Des Plaines was an accountant, a CPA, that had a job downtown. Oh, there was one other woman, Julie Walberer, and she lived in Waukegan. Yeah, so there were – I think, yes, there were four of us. There was a whole group of people, but the four women in this group with various severe disabilities that were living [in] various suburbs had managed to make it to Access Living to this meeting. The first eye-opener for me was that I got to meet people living in the suburbs that had disabilities. Because if you don't drive and you live in a suburb, forget it. Because the suburbs are really geared toward people that have automobiles. So, that's why it was so scary coming out here. I moved to Wilmette because it did have bus lines and trains and all that, but the fact of the matter was that there were four of us that had managed to find a way in. And I started thinking, “Man, we're all women.” We all come from – two of us at least had kids. And I was not a wheelchair user at that time, but my problems were the same exact problems that they were having. So, I ended up getting to know Sharon Lamp. And Sharon Lamp was the accountant or the CPA. Very, very articulate and very bright. And she was somebody that reminded me of myself. And it was like as I started interacting with her all of those things that scared me about the people in the group, the fact that a lot of people were nonverbal, that some of the people that were verbal didn't speak very well or they spoke with a lot of difficulty and they had profound disabilities, started to melt away. It took me several encounters. And it became – over many meetings with them, I started gaining more respect for – first of all, the thing that was that I had similar limitations and that we all had these same functional needs, [and] that was to get on transportation. So, I started getting closer to the women in the suburbs, even though we didn't drive. But we all – the suburbs are just – if there's activism going on, it's usually in the city, and that's where it is because we were using the train, and the train was the paratransit version of the train that had thrown us off. So, we all had our stories. But the one thing was they kept saying to me, “Look, you're a taxpayer, you're entitled to ride the train. This is bullshit that somebody's trying to tell you that it's not their job to transport people with disabilities. It's just illegal. We think.” There was no law at the time. But it just didn't make any – we had it in writing. So, we started off. It was my first real activism outside of Vietnam War kind of thing and all that stuff we mentioned before. We started deciding that we were going to go down to Metra board meetings and make our case. So, we went to the Metra board meetings, and I had never gone to municipal or governmental board meetings to make a case. I don't remember there being any women on the Metra board at the time. With the exception of one guy, people were really, really mean to us. Really mean. They kept calling us “you people.” It was just like one of those documentary movies. “What do you people want?” It was, again, “This is your problem; this is not our problem.” They kept saying things like, “Why aren't there more of you?” And we kept saying, “We're all over the place; we just can't get here. We're not here because we can't get on your stupid train. We can't get on the bus. How do you think we're going to get to the meeting?” And they kept saying, “We're not going to put the money in this because there aren't enough of you.” They kept giving us all these reasons; either we weren't entitled because we should be working with social workers, or because we weren't significant enough in numbers to justify the money. And all of this was a wake-up call. Because I had never dealt – I had been very successful in business, and when I came out of business, I had this false assumption that if you were logical and persuasive – logical argument – you could maybe get something done. And this ran counter to everything I had experienced prior to my injury because I was going into the Metra board meeting as if I was going into a Marsh & McLennan or a William M. Mercer board meeting. It wasn't like that. It was not like that. It was we were “you people.” I wasn't Judy – well, I wasn't Judy Panko Reis in those days. But I wasn't Judy Panko the businesswoman. They had the same perceptions of me that I had the day that I first came into the Access Living thing, and I was just horrified by all who became my close sisters and friends and my colleagues. They were just like – they did not want anything to do with us. They just kept giving us argument after argument as to why they had no duties to accommodate us, they had no money, and they had no intention of doing it. So, that's how it started, and so this started making me angrier and angrier. Because, by this time, it was becoming really clear to me. I had never been referred to as “you people” before. And it was like, OK this is it, Judy, you're one of these people. As I said, it didn't make any difference; I had accepted the fact that I had a severe disability, that I was going to be living with these disabilities for the rest of my life, that transportation was going to be key to getting my kid around, that I had the – you know what? I think getting in touch with and hanging around with all these disability activists, the main thing they did for me was it gave me a sense of entitlement. But you can't get a sense of entitlement until you accept the fact that you are in either – you've been objectified, or you've been marginalized. See, so I had to go through those steps. What I'm saying to you is, breaking out of this pre-injured bubble that I was in and understanding that I was in a whole new ballgame. I think it was the phone call throwing me arbitrarily off of the system and then me giving myself permission to hook up with these activists, number one, and then secondly finally allowing myself to say I'm one of you and you're me, that we're all interconnected here. That's a huge process. Because everything around you is working against that. Taking on that identity. It started dawning on me that the only way I was going to get transportation was if I stayed involved with these people that had the same stakes in things that I did. Because obviously the executive director wasn't going to change anything. The Metra board wasn't going to change anything. They were telling us all the reasons they weren't going to do it. I couldn't do anything by myself as one person. It just wasn't going to happen. So, I just kept sticking with it, and we kept going to these board meetings, and we would have these actions, some of which I didn't always participate in because I realized that they could be dangerous, and I had all this post-traumatic stress or something about getting hurt. Because sometimes some people would chain themselves to the buses and the trains and all this stuff. So I was selective about the stuff that I did. Only because I had been – I had really been – I was coming out of a murder and a near murder. You don't throw yourself in a situation where there's cops with billy clubs. I don't care what you say. Even if you're in a wheelchair. You've been in enough civil actions to know that they get out of hand, people start throwing out tear gas or – I'm not talking about us; I'm talking about the other side. I just did not want to be in chaos. So I had to be somewhat selective about the actions, so to speak, that I participated in, even though I did all the board meeting stuff, I did press conferences and that. I just stayed with the stuff. So the Metra train stuff was my first stuff. And then, I got involved in bus transportation in the suburbs and PACE. I used my alliances with these disabled women, mainly Sharon Lamp and Julie Walberer. Julie lived in Waukegan, and Sharon lived in Des Plaines, and I was here in Wilmette. The reason we got involved with PACE was because they were the ones that wouldn't let me take my kid – at that time. They changed. We got them to change. But they wouldn't let me take my kid on the paratransit because he wasn't disabled. So, it was like once – so as I kept going to PACE board meetings with this little core of disabled people and going to the Metra board meetings. The good part that was happening, Rosalind, is that something was – we were just a little spark of what was happening in Chicago and all over the country. Because we were just – what was happening around the country was that various disability groups were working in cities and towns to try to get transportation more accessible. Because it was the main line to getting educated, to getting out of nursing homes, to getting jobs, to getting to your church or synagogue. Our concern was that if we didn't get transportation, we would never get out of nursing homes. That people would just stay stuck. So, transportation was really key. As it started happening around the country, and we were just working here in Chicago – I was mainly working [in] Chicago northern suburbs, both buses and trains – there became a momentum for the ADA, the Americans with Disabilities Act. As it became clear that we might have a shot at getting the first President Bush to seriously considering and signing the Americans with Disabilities Act, the activism started paying off in a large way because what would happen is we were able to start identifying what we wanted on the trains, what we wanted on the buses. By that time, we had had some small victories. We had lawsuits, by the way, too. We had never sued PACE, but we had sued the CTA, and we did sue Metra. We ended up getting settlements that were in our favor to at least getting some of our transportation privileges reinstalled, those of us that had gotten thrown off arbitrarily. So, this other current – there were all these currents working at the same time – is that we started networking with these other disability groups across the country to get really strong disability inclusion provisions in transportation in the ADA. And at that time, I got invited to join the Regional – the RTA. Here in Chicago, the main transit agency that funds all of the subsidiary transits is called the RTA, the Regional Transportation Authority. I got involved. By being a loudmouth activist and in the face with all these boards, they finally were wise enough to start inviting those of us, particularly the four women I told you about that lived out in the suburbs, to come to the RTA and join with them in an accessibility plan for transportation for the city of Chicago and for the geographic area. At the time we were doing that, we were simultaneously giving input, not through the RTA, but through our own disability rights groups, to shape the provisions for transportation for the ADA. That did end up passing in '91, but it took still several years for the ADA to get implemented. I would say from start to finish, we were able to get – on the train it probably took me twelve years to get on the train.
RH: Jesus.
JPR: But we got on. And what cracks me up is that every day I get on the train, to this day, which I take to work, which is great. First of all, it's just great to be able to use something that you had a role in happening, the social change that you have in your lifetime, rather than something for your kids to enjoy. People look to me, and they'll say isn't it nice that Metra put these lifts on for you people. And I will just like – it's like my mouth falls open. Where are you coming from? What do you mean? Isn't it nice that they thought to put lifts on? They didn't think to do anything. I always take the opportunity to politely educate people tooth and nail that Metra did nothing to be nice to us, that the only reason that there are lifts on the trains is because me, along with a whole bunch of us, were persistent enough to take our personal voluntary time and go in there and fight for it, both on the local and the national levels. And then we got lifts on the trains. But it had nothing to do with Metra. Metra did it because they had to. And we made them do it. So that's how I started it. But what was good about that, the thing that was so huge about that, was that the first thing it did is it gave me the permission to think about myself in a non-shameful way as a proud disabled woman. I wasn't able to do that before. That's number one. The other thing it did was it solidified my sense of entitlement, and it gave me an idea of the fact that I got my first taste of community organizing and what can be done if you did it right. I learned some things that worked. I learned things that – that's where I started learning about that balance of negotiating between not self-destructing and getting co-opted. Because all those factors come in. You've got to get to a point where they see you as somewhat reasonable partners that they can even negotiate with and discuss, or you're not going to get anywhere. Yet, on the other hand, you just can't – you can't really let them set the agenda, or you're going to end up with nothing. For example, we really did not want a disabled car on the train any more than we wanted a car for all the Black folks on the train. We had to make the case that even though we understood that maybe at the beginning one car could have a lift just to get the lift started, we wanted to make sure that there was an understanding that, however it was done, people with disabilities would be sitting in the same car with people that were able-bodied. We did not want a disabled car. So those were the kinds of things that we had to talk about. We also had to make sure that they used the expertise of disabled people to design the lifts and to incorporate the lifts on the trains and get the stations accessible, because once you get lifts on the train, then you got to – it doesn't make any difference if the stations have stairs in them and you can't get into the station. You're not going to be able to get on the train. So, it became this gigantic project. And, of course, it cost a lot of money, and yes, the Metra trains and the trains anywhere are going to be the most expensive piece of transit to overhaul because they're the most archaic. And you got these old-timer old guy old boy network thing from the whole Metra thing, like the guy that wrote me that stupid letter or wrote the congressman that letter. We were able to get members of Access Living, this disability group that I'd been involved in, involved in actually helping design the implementation of the lifts and the stations and all that. We worked all this stuff into the larger – and we lobbied for it with our congressmen here in Illinois. It was remarkable that I had that experience, not only to do it but that there was actually an outcome in my lifetime. Because you talk about social justice and you talk about civil rights. Dr. King didn't get to live to see a lot of the benefits of his work and neither do a lot of people. So the fact that I can get – that I ended up being able to get my kid on the bus, that we were able to actually get that changed without the ADA, that we just kept going to board meetings here at PACE, and that we were able to get me on the train every day now to go down to work, and a whole bunch of other people and thousands of people like me, that I could benefit from that and use it every day is pretty extraordinary. So some of that was the spirit that I brought into health care because I didn't have that before.
RH: So, the health care came after or simultaneously at some point?
JPR: Pieces were simultaneous. I was doing a lot of the disability – the way I think about this, Rosalind, is I always think of where I was in school because I did these two graduate degrees. The main transit advocacy started when I moved up here, and so that was probably '89, '90. I became a graduate student at Northwestern in '89, and I did the magazine on disabled women, Creative Woman, in '91. It was right after that, right after the magazine and right after my second master's degree at Northwestern, that I got involved in organizing the Women's Center. I think the ADA was signed in '91. We didn't get the lifts right away, but the fact that we got the ADA signed was pretty big. It wasn't just us in Chicago, obviously. But the fact that I played a role in it in shaping the stuff in Chicago and in my immediate suburbs – so, I would say that 1991 was probably the end of my transportation advocacy and the beginning of my women's health advocacy and the end of my – I was doing both. Both of those I was working on in graduate school. They were actually some of the projects I was working on as far as my graduate study at Northwestern.
RH: Oh, really?
JPR: I was in a real practical program where we were working with real-life experience. Most of the writers I got to do the magazine came – they were my graduate student colleagues. One of the women that I got, Gloria Hess, was one of my colleagues, and Holly Chudnet Halliday. They were both colleagues of mine at Northwestern, and I asked them to help me write articles for Creative Woman magazine, which was solely dedicated to disabled women's issues. And they were able-bodied women, but they were in my master's program at Northwestern. One of them went out and interviewed Ginger Lane. As I said, I didn't know Ginger that well. So, I was doing both the Metra and the PACE advocacy while I was in graduate school, and when I took my persuasion class I used some of the persuasion techniques that I used with the RTA and PACE to get my kid incorporated into the system in one of my persuasion classes. One of the papers – in fact, I got an A-plus on it because it was a real-life experience. You always had to use real-life experiences. I was in a master's of managerial communications, so we were basically learning how to use communications in a management setting or in an organizational setting. Every one of our classes, whether it was public speaking, we were learning how to use communications to be more productive in the workplace. And I was using it. Because I wasn't gainfully employed at the time, all of my applications were in advocacy. Plus, I was writing this magazine. And so by the time I graduated, I had become friends with another key person in my life who should be mentioned as contributing significantly to my success, and his name is Dr. Paul Arntson. He was my advisor. A-R-N-T-S-O-N, I think. He was my advisor at Northwestern. And he was doing – his specialty was health care communications. So, he had invited me to become part of his consulting team on healthcare communications, and it just coincidentally happened that he had a healthcare consulting project at the Rehabilitation Institute of Chicago at the time that I was his graduate student and I was doing my magazine. He was working off of really grassroots healthcare entitlement issues. That's where he was coming from. He had a real bottom-up kind of approach to health care advocacy in general, health care entitlement. It was very much into the community-solving aspect of community health care problems, that the community should be a partner with health care organizations and health care agencies in solving any problems of health care or social services that were facing the community. So, it was very much community organizing that was part of the solution. I learned this in my classes with him. The fact that I was on his consulting team when he was doing work at RIC and the fact that I was working on the magazine all at the same time was one of those coincidences like meeting Jerre Levy and Wendy Heller at the University of Chicago. Meeting Dr. Arntson, him being my advisor at Northwestern while he was doing this work at the Rehabilitation Institute, and I happened to be a former patient there – I was writing my magazine while I was in his graduate program – all started coming together because he was an influence on me. It was like he was basically saying, “Don't buy into the top down of the health care bureaucracy, pretty much directing you to tell you how to get your needs met. Rather you know yourself best.” What was happening when I was a graduate student is I was starting to understand what it meant to be a disability rights activist and what my sense of entitlements were. I was just starting to understand that I had an interest in feminist issues, women's issues, and disability. By the time my magazine came out, I had graduated from Northwestern. So, by this time, I had my second master's degree. I sent the magazine over to RIC, where I had been a patient, and it was around that time in '91 that Kristi Kirschner and Susan Rayner, the two doctors I had talked about, were starting to notice that their women, their outpatient women, were not getting outpatient gynecological services. They weren't getting pap smears. They weren't getting mammograms. They weren't getting services for domestic violence. They weren't getting just basically reproductive health care. They couldn't understand it because their male patients were getting services for sexuality. Because if you're spinal cord injured and you're a man, that's one of the first things you want to know about. So they were pretty mystified at why there weren't as many services that were gender-specific for women as there were for men after they became disabled. All they did was observe the fact that their women patients, when they were getting discharged, were having problems getting contraceptives, getting mammograms. Some of them were losing – were being coerced to having their tubes tied because they had disabilities. Some of them were being forced to give up their kids for adoption. So they recognized that something was wrong. Because RIC is a very forward-thinking rehab hospital, I would have to say that it is the most – it is the rehab hospital in the country that is most committed to advocacy for the disability community. Most hospitals don't think of those – most hospitals don't think of themselves as advocates. Certainly not in the community setting. They think of themselves as advocates for meeting their own hospital needs. But RIC is one of the few hospitals, and certainly rehab hospitals, in the country that actually worked with the disability community to promote disability advocacy. So what happened when these doctors recognized that the women in their services were not getting basic reproductive health services or social support, they went back to Access Living, the place that I'd been working with to get the disability transportation stuff going, and went to their executive director, Marca Bristo, who was actually featured on the cover of my Creative Woman magazine as a disabled woman mother. She was a former OB/GYN nurse who had become spinal cord injured through a diving accident. She was a medical provider, and she was facing all the same barriers we were all facing as women. She’d been a former patient like Ginger and I had been at RIC. We were all recently injured. Interesting. Ginger, Marca, and I were all severely disabled as a result of outside adventures. I was camping, Ginger was skiing, and Marca was diving. So, we weren't timid women, I guess. But it tells you that women can be just as much risk takers as men. I told you before that the reason why there were so few services for women in the rehab setting was because the demographics of traumatically disabled people favored men because they saw men as the risk takers. And that's not to say there weren't disabled women; it's just that the predominance of patients that became disabled through trauma were men. And the practitioners were predominantly male. So these doctors were very wise. That's why I like to mention that. Because not all doctors would have done this. Maybe it's because they were women. But they reached back into Access Living and invited Marca Bristo, Ginger Lane, and then they invited me because I had this magazine that I had circulated after I finished Northwestern. And plus, I had this contact through my advisor. And plus, people knew me because I was a former patient at RIC. So, they started off with – Kristi and Susan started off with Ginger, me, and Marco Bristo, and a few other racially diverse and disability-diverse women, and just had us come downtown and talk to them. They took the money out of their pockets for transportation for us because transportation was such a huge issue. I would say I don't have a way to get down to talk to you, but I want to talk to you. How committed these women doctors were. They were like, “We'll find a way. We'll get you down here.” So, they would talk to us and say, “What's it like being a woman living with the effects of stroke or amputation or cerebral palsy or multiple sclerosis or brain injury or spinal cord injury? What's it like once you leave this hospital? What's it like? What's it like? Can you get contraceptives? Can you get in the doctor's office? Can you get a mammogram? Can you raise your kids? Are people supporting your right to reproduce?” And so they met with us like three or four times. And all this shit started coming out. It turned out that we were all having these huge problems. That people were not getting access to reproductive health services, that they were losing custody of their kids, that they were victims of domestic violence, and some people were becoming disabled as a result of violence in the home, whether it was because of a caregiver or a family member. And that the domestic violence shelters were not properly equipped to support them in shelters. And that all these terrible things were going on. And so then the question became, well, what are we going to do about it? And because I had come out of the disability transportation stuff, I was, at this point, not trusting the system and knowing that the system wasn't necessarily going to take care of me. But I also came out of Dr. Paul Arntson's class, who was a real strong advocate of getting the community involved in solving health care and social service problems. That the solutions had to come from the community to work. If they were going to be viable, they had to come from the – so the question the doctors had was, “Well, how do we solve this?” And because of people like Ginger, Marca Bristo, and myself, for whatever influences all three of us brought to the table, by this time, we were saying things like, “Well, whatever the solution's going to be, it's not going to be the way it's been.” We're not going to trust – put all our eggs and say the doctors are going to come up with the solution, because if they were doing such a great job we wouldn't be in this mess to begin with. So we were back. The only difference here is we had doctors that were talking to us rather than these people at the transit agencies that were treating us as “you people.” We had two women doctors, Kristi Kirschner and Susan Rayner. That's why they deserve to be recognized because they were ahead of their time. They were saying, “Well, what should we do? How do we do this?” We obviously have some problems here. And while they were talking about – the only people they were talking to at this time were maybe a core of like fifteen or twenty women that we had networked through outpatient at RIC, and we knew if these were experiences that we were having that they were multiplied manyfold all over. And so we said, “Well, the thing we really have to do is start a center, but the center cannot be run by able-bodied healthcare providers. We want to start a center that's run by and for women with disabilities. And we're not just saying any – it shouldn't be run by any disabled women. We want qualified women, women that are either experienced or credentialed in this.” So, the question then became, well, how can we create a center like this in a hospital? Because hospitals are not known to be bottom-up places at all. They weren't as bad as the transit agency, but the fact of the matter was that it was because of people like Paul Arntson and some of his colleagues at Northwestern that brought us models that were much larger, and when you write this up, I want to – I've got names because they were very influential at the time. They gave us a broader framework for thinking about community organizing around health care. We came up with this idea of creating a partnership between the disabled women's community and the hospital staff. We knew this was going to be a rocky road. To be very crude about it, we knew that we were running the risk of being labeled as the inmates running the prison. To be very crude. That you just don't have patients going around dictating what happens in the hospital. You're the patient. You're supposed to be down here, right? So this became the challenge, was to try to create a model where former inpatients, current outpatients with – Ginger, Marca, and I were all former – I mean current – we were former outpatients but current outpatients. How were we going to pull this off and create a center where it wasn't dominated by able-bodied healthcare providers telling us what to do? So, it had to evolve. We started off with a clinic. We developed a clinic that was not run by disabled women because we didn't have disabled women doctors at the time. But we had a strong input into this clinic. And then, we had a big debate as to – did we want to create a GYN clinic within a rehab hospital? Because we didn't know if this was a good message to send. Who wants to have a segregated clinic for disabled women when we should be able to be seen by any GYN clinic from Cook County all the way to Northwestern and University of Chicago Gynecological Clinics? So we had this big debate as to how are we going to do this, how are we going to get our needs met and create a clinic that desperately needs to be created. Because what was happening is women were either not getting proper gynecological services out in the community, or sometimes they were actually either turned away, or they were so traumatized because they weren't asked about their sexuality because they were just assumed not to be sexual, or people weren't giving them contraceptives because they didn't think they should be sexually active, because they were like, “Wow, why should a woman with cerebral palsy even be thinking about having birth control, and God forbid if she got pregnant, she would just be producing more disability, and we don't want any more of that in the world.” So, there were all these stereotypes and really negative attitudes in medicine that were creating bad experiences for women. A lot of them were just unsafe, and then there were these – like I say, the women a lot of times were just being coerced to have their tubes tied rather than – why deal with periods? You're disabled; you got enough problems. We became really – we had all these issues we had to deal with. How are we going to deal with the infrastructure within the hospital that wasn't used to having any kind of program that was actually run by disabled people, number one, much less all disabled women? And then two, even if we could find a way to do it, what were we doing? Did we want to send the message to the rest of the world that the only way that women with disabilities could get proper health care – reproductive health care – was by getting services in a rehab hospital when they really should be setting up this clinic in, like I say, Northwestern Prentice Women's Hospital at the time, Cook County, whatever? We finally decided that the experiences were so negative and that safety was such a big issue that we were going to create a clinic with the – we created this – we thought about this philosophy of choice. We thought that we really didn't want the RIC Women's Clinic to be the only place that women could get reproductive health care that was disability-friendly and respectful, but it would be a place among many that they could choose from. And we wanted them to have the choice at RIC because we knew, if nothing else, that they would get safe, dignified treatment there. The equipment would be accessible. The nurses and doctors would understand their disabilities and not look at them like, “What are you doing here? Why are you asking for contraceptives?” and know that they should be getting screened for STDs, which they weren't getting screened for, because they weren't supposed to be sexually active, or they didn't think of them as being sexually active. So we decided that we saw reproductive health clinics in a continuum of choice, and within that – and we also saw ourselves as teachers where we could start educating – because we were on the Northwestern University campus that has one of the few programs in rehab and physical medicine in the country, that if we could get in there and start educating providers, particularly when they were students, about how to adequately service the reproductive health needs of women with disabilities, that we saw this as a positive thing. So we ended up agreeing to create a clinic as one of many choices disabled women would have to get their gynecological care, while at the same time going out and creating educational resources and educating physicians in primary care settings and in the OB/GYN settings. A large part of what we started doing was educating healthcare providers. You will see in my resume that one of the things we do is every five years, we revise and update a chapter in a rehab medical textbook on providing healthcare services for women with disabilities. So we weren't doing anything like that before we started the Center. The Center has become a respected contributor to the fields of rehab medicine and OB/GYN literature on providing appropriate disability-friendly reproductive health services to disabled women. So we ended up creating this model that we called – where the healthcare providers immediately moved into the role of facilitators, and the main decision-makers and policies were driven by the women themselves. We created a community board of women with disabilities. And this is still active today. We have quarterly meetings that are open to any disabled woman, whether she's a patient at RIC or not, who wants to participate. It’s the community board that pretty much drives the creation of the programs and the services that we provide in the center. For example, when we decided to respond to the need for role models for teenage girls with disabilities, our community board stepped up to the plate, and there were two disabled women that said that they would volunteer their time and their services to start creating a template for a mentoring program. We had no money. By the way, we had no money at all. RIC wasn't going to give us a penny. And they didn't have money. We didn't expect them to have money. So that became a whole other thing. So we started without any money. We put in this idea of a community board working in partnership with administrators and clinicians at RIC, knowing that it had never been done in the country. And we had no money. And so I wasn't getting paid, and we just started off. Hospital donated some services to us at the beginning. They donated money to us for me to start writing a newsletter, which was called Resourceful Woman, which was a spin-off of my magazine Creative Woman, and I'm still writing that newsletter. It's an educational publication that has won several awards, and I'm still doing it today. In fact, I'm hoping to bring the most recent issue to the luncheon. And that's written by and for women with disabilities and their health care providers. So that's why I say it's educational because it's not just here's what's going on, it's here's how you work with osteoporosis, here's how you work with domestic violence, here's how you work with breast health, here's how you work with parenting. The other big challenge we had was getting money. Because if we didn't have money, we weren't ever going to be able to have a staff, and we weren't going to be able to really have any respect within the hospital, and certainly none within the community. So the hospital started working with us to try to find money. We first went to the Chicago Foundation for Women, which you would think was a logical place to go to, and they turned us down. The reason they turned us down was because we were in a hospital, and they didn't give money to hospitals. So right away, they saw us as not a community-based group, even though we were trying to do something new. We were trying to explain that we were a community-based group within a hospital. So, the next big thing we had to do was start [inaudible] women. Women were not into us at all. Women activists in the city of Chicago did not get us within the first five years. They just couldn't get it. They either thought of us as being too co-opted by a hospital – they didn't understand that we could distinguish ourselves from a hospital and that we could retain a community-based legitimacy within a hospital. The next problem the women's community had with us was that when the University of Illinois started its first women's health initiative, it had a health conference, and they asked us to submit an abstract, and we did. They, at first, did not understand that we were not in existence to get off our wheelchairs. Because the women started viewing us as what health care needs could women with disabilities have other than wanting to get cured. We kept saying that's not what we're about. We're about – we are you. We need the same kind of services you need as able-bodied women. We need parenting support. We need domestic violence services. We need OB/GYN care. We need treatment for STDs. We need screening for STDs. We just need to be included. That means getting rid of stairs. That means making sure mammogram machines are accessible. That OB/GYN tables are accessible. That we're given – that we can get in and out of clinics. That there are sign language interpreters when we need them. And it took a while. It just took a long time to start educating the women's advocacy community just – at that time, in the early '90s, women's healthcare advocacy was starting to take off. So, we just kept having all these battles. We had to educate the doctors. We had to educate the women's funding agencies. We had to educate the women's advocacy people. Then something big happened. Marca Bristo, who I mentioned to you was the former OB/GYN nurse who had become spinal cord injured through diving, was the CEO of Access Living, the disability rights group I was working with on transportation. She came to me and said, “I have an opportunity to nominate a volunteer in the community, anybody that's doing outstanding volunteer work in disability and health care for a first time ever community health leadership award being offered by the Robert Wood Johnson Foundation,” which is the world's largest health care foundation. And she said, “How would you feel about me nominating you because you've been putting in all these hours and all these times as a volunteer trying to get this Women's Center started at RIC?” I said, “Sure.’ And she said, “Well, you're going to need co-nominators and all these people to write up your stuff.” So I went to Dr. Paul Arntson, and he agreed to be a – write a letter of support. I went to Dr. Kristi Kirschner. She wrote a letter of support. Marca, of course – Marca and Ginger wrote their whole thing. And RWJ, much to our shock – they were only awarding ten leadership awards throughout the country. This was 1993. They were only awarding ten. Only ten people. They had I don't know how many nominations from all over the country. They did all these – and I guess they whittled it down to I don't know how many. We got a call that they were coming out to do a site visit. I was shocked. But site visit didn't mean anything. Long story short, they came here to Wilmette. They interviewed me in my home. Then they came to RIC, and they saw that we had no money. They saw that we had no space. And they met Kristi Kirschner and Ginger Lane and Marca Bristo. They saw that we were this little ad hoc group of disabled women that were just trying to get clinical services and sexuality resources and reproductive health needs and parenting needs and domestic violence and stuff for teenage girls and that we were really struggling. We were having a hard time with the women's health community. The health care community. And lo and behold, I was awarded one of the awards. The thing was, they gave me a hundred thousand dollars for the Center, to be used [for] the Center. Well, believe me, this was a wake-up call. All of a sudden, somebody had to pay attention to us. Everybody paid attention to us because we had a hundred thousand dollars, and we had no space. We had no space. We had something, and we were being recognized by the largest healthcare foundation in the entire country. They came with media. They came with a lot of media. They put ads in the New York Times with our pictures – Judy Panko Reis, RIC Health Resource Center for Women with Disabilities. Well, RIC, all of a sudden, they had a hundred thousand dollars and me as a volunteer, and Dr. Kirschner and Ginger and Marca, and these little ad hoc things. These doctors were pulling this money out of their pockets, their personal pockets, to get us just food and to talk to us about our experiences. So they gave us space. They had to. So we got on the radar screen in the hospital. Then what happened is because they were doing all this media and we got this huge grant, all of a sudden, guess what? University of Illinois, Chicago Foundation for Women, people were like, “Oh, I guess these disabled women have something. There's something about you. Maybe there's something going on here.” So that taught me another lesson. I started learning about money. I knew that money was always the number one thing people told you when you were looking for rights as to why you couldn't have them. They said, “Oh, it's too expensive to get you on the trains. It's too expensive. We don't have any money to get you a center or a clinic or whatever.” But I learned a lot, that hey, you get that right – and once we got that money, we got space. Once we got space, Dr. Arntson came in, and he – well, he was always with us. He gave all of his services free of charge. He helped us start organizing our community board. He was the one who helped us start thinking proactively about how to do this unique model of a community-based program in an institution that had never been done before. He started helping us frame our identity in a way that we could start getting funding from other sources, and we went back to CFW, Chicago Foundation for Women. We went to the RIC Women's Board. We went to the Lurie Foundation. We started getting money, and we started getting money, and we started getting money. The more money we got, we could start paying for staff and programming. And money follows money; it just does. I didn't know that before. So that's how the Women's Center started, and then, as I said, I had been involved in domestic violence advocacy with Access Living right around the time I was doing transportation advocacy. Through my connections with Access Living, I stayed involved in domestic violence. Pretty soon, that program got transferred from Access Living over to the Women's Center at RIC. We started getting calls from Children's Memorial Hospital and from parents in the area wanting to know what we were doing for teenage girls. We went to Girl's Best Friend Foundation that funded girls' programs and said, “Hey what are you doing for disabled teen girls?” They said, “We've got money. We'll work with you”. And we said, “Well, we got all these parents. We've got health care providers that are referring girls to us. We don't have programming for them, but let's create something.” So it's like once you – it's like build it, and they'll come. It's like once – it was just like incrementally once we got the RWJ funding, we got more funding. Once we got more funding and got more staff and we had space, and we had this real crummy space at the beginning, and then the more programs we developed, the more funders we got. The more funders and services we got, the hospital wanted to give us better space. Because it was a win-win because they started helping us find more funders. The more funders we could find, the more programs we could develop. Then the higher-profile we got, we started getting a lot of media, a lot of media. I've been on TV several times. And we were getting written up in the Tribune and rehabilitation medicine publications, health care publications. We were writing our own articles, getting published, and doing educational videos on parenting and reproductive health care that we were distributing throughout the health care community. So we were getting to be a legitimate force, and there wasn't anybody else in the country doing what we were doing. So, we became a state-of-the-art template, and people started calling us to find out what we were doing and how we could do it, or how they could transfer, could they do a mentoring program, how did we do our DV program, how did we do our clinic, how did we work this partnership at RIC, how did we manage having a community-based group in a hospital, how did we retain our authority without getting coopted. It's hard. It's a constant balancing act. We always say we live with this creative tension being a community-based women's group in a rehab hospital. But one of the things that we have that's our secret weapon is that Ginger Lane and Marca Bristo are both wheelchair users, and they're both on the RIC board of directors. So, it ended up being like we had our little Women's Center with me running it, but it all had to go back to the top because our women are also influencing the larger direction of the hospital. The hospital, in turn – it's like working in a dynamic where it's incredibly multidimensional – I refrain from saying win-win because that makes it too simplistic. It's multidimensional. You talk about embedded. Women work in embedded networks. It's an embedded network of win-wins for the women's community-based group and the hospital. We reinforce each other, and so that's where we are today. Then it's just been this evolution that continues to keep developing. So, I didn't know about community organizing before I got thrown off the transportation. I didn't know how hard it was going to be to mom with a disability that didn't drive. I wanted to meet other moms. I didn't have a way to do that. There wasn't anything in place. So I knew that when we started our Women's Center I wanted to create an atmosphere where disabled moms could either come or meet one another and talk to each other about – and where some of the kids could see other moms with disabilities, so they knew that their mom wasn't the only mom that had a disability. Because often when you go to school you think it's only your mom. We got involved with other vulnerable groups in the city of Chicago. We got involved with other – we started working with the gay and lesbian community. We started working with women of color. And we started working – we just started – we became very, very active in health care advocacy with all women's groups. It was a chance for us to start educating them. Now it's at a point now where whenever there are women’s advocacy issues, whether it's domestic violence or clinical services, we're at the table. There's a disabled woman representative at the table. None of that was happening in Chicago. And it turned out there were parallel women's organizing efforts going on with disabled women in Canada, and there were a few pockets of activity in California and Boston. But nobody was doing what we were doing. And nobody still has done what we do. So we continue to be pretty much the only comprehensive community-based women's center in the country, and in North America. Because since then, Canada has lost a lot of its funding. I've gone up there and met a lot – because there's socialized medicine, and once the government cuts your funding, you're dead there. So we continue to be very active. And we network with disabled women's groups in Berkeley, LA, New York, Boston, and all over the country.
RH: Wow. I guess this is not really related to this, but I'm curious. Do you have to give a percentage of your funding to the hospital? Thirty-five percent?
JPR: That's the wrong way of looking at it. Yeah, it's the other way around. It's more like this. It's like the hospital, just off the bat, provides all space. I'm right off Michigan Avenue. I'm like on the Gold Coast, okay? I'm in probably some of the most expensive property in the city of Chicago. So, they're giving this to us. And when I say giving, they donate that space to us. So let's just start with before I ever get a penny, I wouldn't even – it's not like I have a lot of space. But I have space. I have electricity. I have accounting services. I have human resource services all donated to the hospital. In other words, what's my alternative? My alternative is to be a storefront somewhere where I'm paying for my accountants, I'm paying for my advertising, I'm paying for my marketing, I'm paying for my human resources, I'm paying for my space, I'm paying for my rent. All that is donated in kind from RIC. So that's why I say that's a different way of looking at it. You have to start with how much – they're my entire infrastructure. Because when we were starting the Women's Center we talked about being a storefront. We talked about being a community-based storefront. Did we want to go into the hospital, or did we want to become a storefront? And it came up several times because sometimes there were bumps in the road, and we were almost coopted, and we didn't really like – we had to fight these battles. That's why I say creative tension, which turned out – we're so far down the road now, I think that we're pretty well established with this multidimensional win-win that it's not like there's never any creative tension, but it's not anywhere what it was at the beginning. But when we would have these bumps in the road as to whether or not we were going to get co-opted by staying inside the hospital, what's the alternative? The alternative is to go out and start your own storefront, your own independent community-based.
RH: No institutional base.
JPR: Yeah, and then you're real community-based, and you're really grassroots. And it was always an option, always an option. I always say to the women it still is. But that's not where I wanted to be the leader. I always said if you want to be – if that's what you want to do, then maybe the thing to do is to find somebody that wants to do that.
RH: So why didn't you want to do that?
JPR: I think because of my business background. I think because I was so skilled at working in – I worked for a very prestigious consulting firm, and I'm not saying this out of arrogance. I'm telling you that people like Mary Riebold – working with some of the best and the brightest of the largest insurance brokerage and pension consulting organizations in the world, I was used to working in a very large organizational setting, and I had strong business skills. If I was an entrepreneur, if I'd come up from an entrepreneurial background, I probably would have gone for the storefront. So, I didn't really trust those skills in myself. That's not to say I couldn't do it. But it wasn't where my passion was. I felt that my skills were best used – my business skills and my skills in politics, which you need a lot of political skills working in an organization, from business were easily transferable into the institutional environment. So I think that we could have been successful in a more entrepreneurial community-based setting. I just don't know that I would have been the person to bring that set of skills to the table. Do you understand? So I'm never saying that we wouldn't have blossomed. And I would have stayed involved, though I don't know that I would have been the leader, because I didn't come up with that, and I didn't have confidence in that. But I always said to the group if this is the direction you want to go in, we may need to go in this. If it became that the minuses of working in the hospital were going to outweigh the pluses, I always felt that we were going to have to get out. We talked about it several times. I don't want to get into it all. But we did contemplate it, and it wasn't just me; it was Ginger, Marca and Kristi. There were various points where we didn't know if the hospital was going to have either the philosophy or the resources to help support the direction of self-determination and community advocacy. Now don't forget there's one big thing about us, is we work off of a women's health model and independent living model. The hospital works off of a pretty traditional medical model, and they don't always agree. So not to mention that medicine is more business-driven than it's ever been, because it has to be, and I don't fault our hospital for that. It's because of what insurance has done to medicine. The hospital has to make money. When I say make money, I mean it has to support – it has to cover the patients. And if the government is paying less money for every Medicare and Medicaid patient that comes into the hospital, that's less money they have for overhead to support those patients. So I'm not complaining at all. In fact, I understand the business of it probably more than a lot of people that didn't come in it from business. So I understand, and I bring that business sophistication to it. That's why I think I've been able to thrive. But I think that at various points, we've actually talked about either allying with just Access Living or other hospitals or just doing a community-based storefront thing. And in the end, whatever it was, we were always able to iron out and work our two different philosophies of – that's why I say about where you're always giving and taking a little bit. You have to totally understand where they're coming from and you have to have some players on their end in authority, not just what do you call those people, not just shills, not just –
RH: Tokens?
JPR: Tokens. You got to have real authority people that totally understand your model and your philosophy. And because we have people like Kristi Kirschner, who's a prominent rehab physician, and Ginger Lane – well Ginger Lane and Marca Bristo are on the Board of Directors, they're both wheelchair users who are totally into the women's health model and the independent living model. And then Dr. Kirschner, even though she didn't come up through that, she totally embraces the independent living disability rights model. So that I've got – and fortunately, our medical directors are very, very – I think we've done a nice job of – I think all of us have done a nice job of helping keep the disability rights model alive within the hospital. Dr. Betts, who's the main founder and driver of the rehab hospital, has always been a strong disability rights advocate himself. That you have to have people on both sides. So I'm one of those people that understands the business side of medicine. I don't understand it in its intricacy, but I understand it more than your average entrepreneurial, totally activist person because of my background in business. And I think that there've been enough people on the institutional side within positions of genuine authority that are not just tokens that they understand this, that we've always been able to find a way. So that's what makes us unique. And that's why you can't just take this as a recipe and apply it to any hospital in any community because it might not work in your hospital or it might not work in your town.
RH: You may not have the right combination of people.
JPR: Yeah. So we just happen to have this very interesting dynamic, creative dynamic between some of the major principals, including Dr. Henry Betts, Dr. Roth, our medical director, Joanne Smith, our new CEO, who's a woman, who actually was very involved in the Women's Center. So our CEO is Dr. Joanne Smith, who actually was involved with the coming up of our Women's Center while she was an attending physician before she became CEO of our hospital. So now we've got a lot of people in positions of high power in the hospital, not just people on the Board of Directors, that understand where we're coming from, and can understand the independent living disability rights model and run the hospital off of a business model and a traditional medical model that thinks differently.
RH: What are some of your biggest challenges now to the movement as a whole and to what you're doing personally?
JPR: I think I can speak of challenges that actually cut both through medicine and disability rights. I think that everybody involved in any form of health care advocacy, whether it's disability or long-term care, knows that there are major problems with health care in this country. And I'll give you an example. When I was a patient with a severe traumatic brain injury in 1980 I was in rehab for almost six months before I was discharged. And right now without being sophisticated in health care economics or not even a health care provider, I'll tell you that in my very crude vision of the world there's drive-through rehab, there's drive-through OB/GYN. It's like when our moms were in the hospital; they had their babies, they had some time to get – I'm not saying the hospital setting is the ideal place for anybody. Maybe you should be birthing at home, or you could be birthing at home. I'm not saying that being in the hospital for six months as a head-injured person is necessarily the key to your recovery. But I will say going the opposite extreme where you go in pregnant with your baby, and you're kicked out the next day while your kid is still anemic and you haven't totally recovered from whatever trauma maybe you've been through, that having a brain injury and kicking you out of the hospital, not giving ample time for you to get rehab services before you have to go out. I told you the biggest adjustment to being a disabled person is not when you're in the hospital. That's the easy part. Hard is when you're out there in the non-disability-friendly world and resources are scarce, and they're giving less and less money for rehab these days, and it's getting harder to get equipment, it's harder to get insurance dollars to pay for wheelchairs, it's almost impossible to get decent health care in your home. If you have a family member that needs to have 24/7 care because of a traumatic brain injury and you need extra help you're not going to get insurance to pay for that. I can guarantee you. These are huge issues. And they impact – and the disability rights community and the rehab medical community are all fighting these same battles, because we know that if you, Rosalind, if your partner became head-injured and was on a ventilator, whatever, she'd be in the hospital for a few days and then they'd say, “Okay, bye, take her home, and you'd say who's going to take care of her, and they'd say to you well quit your job, take care of her. Because that's what's going on. In medicine, they don't have a solution. RIC doesn't want to send – they don't want you quitting your job, because they know that you need to keep your job going. They want to make sure that she's got resources at home, there are going to be people that you can bring into your house, but you're not going to find insurance companies covering anybody to bring somebody in to work with her. The disability rights community is going to say, “Look, we've got personal care attendants that the state of Illinois will be paying, but right now, they're only paying seven dollars an hour. What kind of personal care attendant can you get for seven dollars an hour to come in and take care of your family member? You're going to get somebody that can abuse you, that will steal from you. When you're talking about domestic violence within the disability setting, that's a form of DV. So, we know right now that there are huge issues just within the lack of resources to even get health care extended into your home. Right now, there are more resources to get you into a nursing home than there is to provide proper long-term care in your house. So everything is working against anybody coming home with a severe disability or illness getting support in their home. Everything is favored towards putting you in a nursing home, even though it's more expensive. So I would say – and plus they're kicking you out of the hospital quicker than you have time – you just recently became head-injured like I did or spinal cord-injured like Ginger or Marca did, or one of your family members. You got to learn how to take a shower with that disability. You got to learn to get dressed. You got to learn maybe to feed yourself or somebody to feed you or to breathe again. You've got limited amount of days now. I had six months to learn those things. They're saying, “Okay, here's what we're going to teach.” Now insurance says we're going to give you just a few days to learn this. Here's your instructions. You learn how to do it at home. Come back as an outpatient. If you can get transportation to get back there. And by the way, there's huge issues in medicine that cut across. I would say the personal care, home care one is the one that's going to affect every American, because of aging. We disability rights advocates are working even with the clinicians and rehab medicine. Long-term care is going to be huge in this country, particularly with the aging Baby Boomers. So I can tell you that it's enormous. And what's happening is you're already seeing what I consider and Dr. Kirschner and Marca Bristo and Ginger Lane and I looked, and Dr. Betts – and those of us, we're on the same page about things going backward. Give you an example. Here's a girl, nine years old, that's been known – the case has been known as Ashley X. We think has severe cerebral palsy. And her family does have resources. She was a patient at a Seattle hospital. This was a few years ago. The family decided that they really didn't want her to grow into an adult-size full woman because –
RH: I heard about this.
JPR: Yeah, you'll see this in my newsletter. So they worked with the ethics committee of the Seattle hospital to attenuate her growth so they could keep her a child, okay? So she wouldn't – they adjusted her female organs and basically degenderized her. Everything we started in the Women's Center to react against not happening you're seeing happening in 2007, but for different reasons. This isn't because these people can't afford it. They [have] resources. It's not only that the family wants to do this to their daughter, but they got the hospital to get the medical community supporting it. The ethicists in the hospital said, “Oh yeah, this is going to keep her safe. Now you can carry around your little pillow angel because she's never going to grow.” So, she can be forty years old and be kept like a nine-year-old. That's what they've agreed to, Rosalind. And what's going on is disability rights activists, women's activists like myself, and Dr. Betts and Dr. Kirschner, we're all on the same page. We're outraged. Because what's going on is this can become a norm. And the more you see insurance companies control things and – it's who are the gatekeepers, who are the decision-makers, where are the values, where are those dignified rights that – where is the dignity for this girl because she can't advocate for herself because maybe she can't talk or because she's – that they're going to keep her as a nine-year-old kid when most of the disability rights movement and the field of rehab medicine have been working to get us as full-functioning respectable adults, and basically what's going on is both medicine and family members are now actually sanctioning procedures. They're taking medicine and intervening to do medical procedures for something that's not a medical threatening disease. You're taking a medical procedure – there's nothing that's going on in this little girl's life that justifies medically being done to her. This is because of convenience. So these are things that I'm very concerned about, the physicians at my hospital are concerned about. I'm just giving you one ethical concern with Ashley X, and I'm giving you a hardcore reality. Anybody who thinks that they're not going to be dealing with disability in their family or in their own lives as everybody starts aging, they've got another thing coming. And home care is going to be where most people want their dollars spent. The nursing home lobbies in this country are huge. They've managed to keep all the Medicare and Medicaid dollars going into the nursing home. Why can't we divert those monies into home health care where people could be treated, and they want to stay? They'll probably stay healthier because they're happier? But you can't quit your job. My parents couldn't quit their jobs to take care of me either. And when you're only – the government is giving you – the state of Illinois is giving you seven dollars an hour to bring someone in to take care of your family member who's on a ventilator or has gotten traumatically brain-injured or needs a colostomy changed, you're not going to – that person's going to end up in a nursing home. So those are just some of what I'm dealing with and we deal with every day. And that's the big picture stuff. There's the small picture stuff. The Women's Center is continually trying to work with the hospital to find funding to keep the domestic violence services program funded, to keep the mentoring program funded for teenage girls, to keep new resources and networking supports for parents with disabilities, to help us have the time to work on breast health promotion, to keep our publications going, educating health care providers. I wrote a policy paper.
RH: I saw it. “Takes More than Ramps.”
JPR: Yeah, and I think I might have mentioned this to you. A year after I wrote it, it was cited by the US Surgeon General in his report on promoting wellness for people with disabilities. It's a highlight of my career. It really was. Because when I wrote it, I just – it's like when you're out in the trenches, and you work in the hospital, you see all these people that have disabilities that can't get normal health care because the hospitals are not accessible. People say hospitals aren't accessible. That's crazy. Of course they're accessible. We say no, they're not accessible. There's a lot of problems. And the paper pretty much tells you why health care is not disability-friendly outside of a rehab setting. So that's in my future. And I work with the doctors and the staff at RIC and the disability advocates around – and that's both genders, that's not gender-specific.
RH: When you say that's in your future is this a new piece of advocacy?
JPR: It's a piece that started, once I got the policy paper published we knew – what happened is we started getting – it's just like anything else. You get all these people saying well they – I start getting calls from people all over the country telling me that they're having problems with their local hospitals, they're running into this problem. Well, I can't solve their problem. I'm in Chicago. I just wrote a policy paper. But what we're trying to do is we just got an article accepted by JAMA [Journal of the American Medical Association], and this is huge, it's a spin-off of the white paper, the ramps paper, where we're talking to doctors about why it's important to make their health care services in their offices and their hospitals structurally accessible. You would think you wouldn't have to do that, but you do, okay? You do. Just take it from me, you have to do it. So I feel like it's my personal desire – I started writing the paper not only because I was witnessing all these people that couldn't get basic health care. I'm not just talking about women, I'm talking about everybody – going into their local hospitals, having weird experiences because people couldn't get into a shower or they couldn't have a procedure done or they were denied a procedure because they were wheelchair users or they couldn't get sign language interpreters to interpret for them. These are all violations. People didn't see them as violations of the ADA. I wanted to clarify the Americans with Disabilities Act in the health care setting. So I got funding to do this white paper, this policy paper, and I originally wanted to get working with the hospital accreditation agencies. I wanted to work with JCAHO [Joint Commission on Accreditation of Healthcare Organizations]. Because I wanted them to take a look at what was going on in the health care setting. Just like they made safety a priority for a hospital to get accredited, I wanted to help them understand that to the extent that disabled patients were either being denied treatments or the hospital setting was not user-friendly for a disabled person – either because they didn't have sign language interpreters or because the services and the equipment were not user-friendly – this was not a safe setting, and this was either a violation of JCAHO criteria or –
RH: You have to broaden the definition of safety.
JPR: I haven't done that. I have not even taken that step. I addressed JCAHO in the paper itself. But my hope is that I will continue. Dr. Kirschner and my team on the white paper – which were Dr. Kirschner, Mary Lou Breslin, and then Dr. Lisa Iezzoni at Harvard, who's a disabled woman researcher who's on the faculty of Harvard – we all wrote this paper, and [my hope is] that our efforts will continue to influence people like the US Surgeon General, which was huge, that we got cited the year after we wrote this thing. It was also huge that Dr. Kirschner took a piece of the paper and expanded it and deepened it and reworked it in a way for JAMA to even get – so we're continually trying to get this message across.
RH: What is JAMA?
JPR: Journal of the American Medical Association, okay? These are my work goals. My other work goals in my future, it's my –
[END OF PART 2 START OF PART 3]
RH: This is Rosalind Hinton with Judy Panko Reis. This is the third disc of three and today is March 7th, Wednesday, 2007. And we're at the home of Judy Panko Reis, 513 Locust Street in Wilmette, Illinois. And this is the third disc for the interview with the Women Who Dared project with the Jewish Women's Archive.
JPR: [Rabbi] Mishkin – I'm so much deeper than I was. This was great. But this gave me a framework of feminism and the female aspects of divine energy that I was trying to connect with, both inside of me and outside of me in a larger whole.
RH: So what did [Abraham Joshua] Heschel give you?
JPR: He talked about mitzvot. He talked about Mount Sinai. He talked about prophecy – but he talked about it in a way that I had never thought about it. And, like I said, it intuitively resonated. The main thing he talked about was that God needs us and that this relationship is very intimate. He talked about divine encounters as being real, okay? He distinguishes between a process and an event and talks about [how] divine encounters and divine events are real. And so that's why I say everything is deepening. It's like there's more substance filling it out. He didn't speak from a feminist point of view, but his ideas were so compatible with the framework and some of the ideas, and the freedom and the generous thinking here, that it was becoming easier for me to broaden and deepen the breadth of my understanding of – my fabric of my Jewish soul was starting to take on a deeper understanding. So it didn't speak to me – not everybody's interested in the divine and the relationship. For example, my friend Tikva Kensky always said she's not really interested in God; she's interested in man, or woman, or –
RH: I think that's fairly typical of the Jewish community, the God question.
JPR: But I think probably because of my background, which was so authoritative and all that, dogmatic, it would make sense for me. The first thing I started recognizing when I read Heschel was that growing up a Catholic, because Jesus is like your dominant deal and he's so human, and he's divine, that you grow up without an understanding of anything bigger than that. And when I first started reading Heschel, even though I had a glimmer of it here, Heschel filled out this – helped me understand the mystery and the glory in the ineffability, so to speak, that is real. He helped me understand those divine attributes as being real, and my experience of them, how I experience them in my life, as real. So, I think it was really important for me, in my journey in Judaism, to reframe and to redefine my relationship with the divine and the divine energy and to find a way to work in a female component to it. I believe that that was necessary for me because what I said to the Rabbi is we grew up Catholic, and I went through all that Catholic grammar school and all that Catholic high school, that was my default when I was in a position of trauma. It was almost like there was this unconscious part of me that was ready to appeal to the saints or to Jesus, some kind of thing like that. That really wasn't me. But I still didn't have this – I understood the story of the Jewish people, and I understood the rituals and the holidays and all that. But I still felt that there was something that was intimate that I needed to find, that I was probably struggling with, with this whole Shekhinah thing. I needed to broaden it outside of this, and I was wondering if there was anything that he could suggest to help me deepen that understanding since that was something that I was interested in. Because otherwise, the whole thing seemed a little bit colder to me. It was just personal. So that's what Heschel did for me. He made it more intimate and more real for me within the context of living life. I've got notes on that too, so yeah. The Rashi volume that Philip gave me and inscribed for me is important. In fact, as I said the Rabbi and I just worked on Rashi, and Heschel, and this. Those are my three big texts.
RH: Tell me how you explain yourself to your son and your work and –
JPR: Okay, well, my son has been a vital part of my life obviously, and a large part of helping me to find my work as a woman. When Lewis was young, when he was very young, when he was in first grade, he was very worried about having a mom with a disability, and he was also very worried about being an only child. He was very smart. He used to say things like, “What do you think the chances of somebody being an only child and having a disabled mom are?” Just like this could be the worst thing in the whole world. “You poor thing,” I would say to him, “Well, Lewis, look around, all your friends have problems too; they don't have a disabled mom, and they're not an only child, but they have a dad who died, or they have a mom and dad who are getting divorced, or they have” – or he had a little friend that died of cancer. So I was trying to explain to him that our family was different; it wasn't necessarily horrible or less than anybody else, but if you looked around that there was a lot of diversity, and that sometimes people could look to him and say, “Wow, well, look, Lewis is really lucky. His dad's still living, or he's not sick, or his parents are not going through a divorce, and he doesn't have to visit his other parent in another city or another town.” So I tried to explain to him. What was very interesting is I went through a lot of different stages with Lewis. When he was very young, Lewis had a lot of fears, and it took us a long time to understand that he didn't understand what happened to me, and the little he understood that somebody had hurt me. He started acting out in school. What the teachers told us in kindergarten was that he was always “getting bad guys” and that he was obsessed with “getting bad guys.” Even though it wasn't unusual for kids at that age to want to get bad guys, they felt that he was unusually preoccupied with getting bad guys because all his art turned into getting bad guys and all of his play turned into getting bad guys, and everything got turned into getting bad guys. So they asked if we had talked to him about this or whatever. Because I was working with Dr. Heller, Wendy Heller, my lifelong therapist, who happened to – if you remember – also have an expertise in developmental psychology, child psychology. I talked to her about his obsession [in] these early years, and she suggested that we get him into some kind of therapeutic setting, get him assessed. So long story short, we got him connected with a pediatric social worker in Evanston, and she worked with him. We first went in to see her as a family, then she told us that she would continue to meet with him individually. He started in kindergarten. What we learned was that Lewis had all sorts of fears around my disability and the way I got disabled, and things that would never have occurred to me, but they all made sense in retrospect. We learned that he was terrified that the bad guys who had hurt his mom were going to come back and get him and his dad and either kill them or disable them. It makes me cry to say that. When you think about it, it would make perfect sense that a little kid would think that because that's the way they think. How would he know? So Shelly and I had to come up with an explanation for him that could – we had to do a lot of things to help him feel safe. But we had to come up with an explanation that could make him feel safe. What Shelly told him was that people that beat up people and killed people often get beat up and killed themselves, that if you go around killing people, usually you have people out to kill you too, and that the bad guys that had hurt me were probably already dead. He had to say something. The social worker gave us a lot of different behavioral techniques to help him sleep at night and help get him to learn how to quell his own fears and things like that. So that was the first giant challenge we had. I always use this as an example. I always talk about violence as being intergenerational because that's one of those facts you learn in domestic violence – once you go through domestic violence training, you learn that violence has this ripple effect, that it'll ripple throughout generations to come. Look what it did to me. Look what the violence in the Holocaust did to my in-laws and then all their offspring. This happened before Lewis was born, and it immediately impacted his psychology, his sense of self, his sense of well-being when he was five and six years old. It was way before he was ever born. So I think in a way what happened was – the fact that I got him into therapy, I'll tell you, Rosalind, is the best thing we ever did. Thank God for Wendy, that we got him in right away because you deal with that stuff when they're five and six, you're dealing with a lot fewer problems than when they're thirteen and nineteen and everything. The other thing that was remarkable about that was that I remember, one day when he had been meeting with Margie, he came – I was sitting in a room doing something on my own, and he came in, and he said, so Mom, why didn't you fight back? It occurred to me that he had all these questions, he had these questions that he had never – so that she must have found a way to get him to think about this in her work with him in a safe way, that she could help free him up to start thinking about – again it dawned on me that he – why didn't Philip fight back? His version of violence was TV or cartoons – somebody hits you, you hit back, and then the person knocks out, and then you go on and live the rest of your life. He had no way to fathom the magnitude. In one way, he fathomed it because he was scared out of his mind. But in this other way, he was also very limited in understanding how things worked in the world. Because he had this little version in his mind that we just – that we chose not to fight back, and that's why we got hurt, and Phil got killed. So these were really big deals, as you can imagine. That part was hard, but we got through it, getting him to feel safe and working through these issues as first-time parents. The disability, when he was real, real young – well, my doctor, when I got pregnant, my doctor, Dr. Saghal, who was my doctor at RIC from the get-go at the beginning; I went to him and told him I wanted to get pregnant, and I said man, “I'm really nervous about getting pregnant. I have all these disabilities and stuff.” And I said, “How am I going to take care of a baby?” And he said, “Well, your baby is going to grow up with a lot deeper understanding and more compassion for people because of your disability, and he'll probably end up learning to do a lot of things for himself that other kids wouldn't learn.” He just turned it around and made it a positive experience. He always just said to me, “Look, your kid's going to do really well. I don't want you worrying about your disability being a negative in his life.” So because I couldn't carry him, Lewis didn't get carried very much, I will tell you. My husband and I disagree over this, but I personally believe that Lewis's ability to negotiate stairs and to walk actually happened faster and in more independent ways because I couldn't carry him, because you know how like some kids, they put their hands up to get picked up, he knew I couldn't do that. So he was probably a little more independent in terms of – Shelly makes fun of me because he says – when I used to talk about this with the media and the press, and they were talking about parenting, my housekeeper who I brought in to help me with him, we always – oh, he was walking like at age like two weeks, whatever, it's like the fish that just keeps getting bigger, the story of him doing all these like Herculean things when he was like a little toddler. But I do think he really did have to. So, I think what we've learned is kids adjust pretty well and they learn to take verbal direction from you when you're not physically able to help keep them safe. They learn to respect you. I do think that he ended up seeing the disability as positive. When I got my scooter, he used to sit on my lap, and I'd let him drive it a little bit, which was really, really cool for a five-year-old because we could scoot over to his grammar school. We would pull up in front of the school, and he'd, of course, be working the scooter. And the kids would be running up to him saying, oh, you lucky stiff, you lucky stiff. So it got to be a cool thing. He grew out of that real fast but – and then there were times that I went over to the school and helped out. One day, I think in third grade, they asked me to come and talk to the class about disability, and so I did. And this was really funny because when you're talking to a group of third graders about disability, the hands just all go up, and everybody's talking about their grandmother and their walkers. It was like the one time they fell down, and they had their arm in a cast, and you just hear everything. But of course, everybody had something to say, and it just helped neutralize. Then the other thing that became very very funny was, as I started the Women's Center, we got a lot of press, we got a lot, a lot of press. We were on TV. Lewis was on TV often when I was talking about the battles I fought trying to get him on transportation. I was in the Wilmette press. I was in the Tribune. I was on Channel 7, Channel 2, or whatever. Lewis was often part of it when he was young because the whole issue was disabled mom trying to get her kid around town or trying to do this or that. And so Lewis, I'll never forget this, he might have been seven or six, and he turned to me one day, and he said, “Someday, Mom, when I grow up, I'm going to be on TV without you.” So and then as he got older – I remember when they were first starting to get into websites. One year when he was in school, probably middle school, they were asking the kids to make a website about – the whole class was doing something on the village of Wilmette, how would you design a website for the village of Wilmette. What the teacher told me is that Lewis describes it as disability-accessible and had the accessible sign, because by that time I think we had the ramps on buses and the trains, and he said, “Well, it's accessible. Wilmette is accessible.” So he thought about these things. Just like the way – the influence of my mother taking on the Catholic Church and the nuns and telling me that her father was a draft dodger and telling me that she would send my brothers to Canada before she'd allow them to get drafted. I think that those kinds of influences in my life were a similar kind of influence for Lewis. I think that he – oh, I forgot to tell you, that when I was at the height of my transportation anger and when they were telling me that they didn't provide social services to disabled people. We were starting to do demonstrations, manageable demonstrations. I was still walking, and I got Lewis in a stroller, and I had a friend drive me downtown, and we went to the RTA, and I had Lewis in a stroller, and we were demonstrating. So I was the mom with the baby in the stroller trying to yell get on the train basically. So Lewis was already in the rallies and in the stroller, so he was always part of the actions, the equation, and the media attention. Now sometimes, people in the hospital say, “How old is Lewis?” I say, “He's nineteen.” Because they remember when he was three and when we were trying to get services in the hospital, and we were trying to get transportation. Another positive thing for Lewis was that because I didn't drive, Lewis started negotiating public transportation by himself very quickly. And I can tell you, as a mom in the suburbs, I didn't have the minivan, I didn't have the station wagon, I couldn't carpool. Lewis did the bus. So Lewis became a very independent traveler. Lewis started learning how to – when he was in junior high, he was already taking CTA buses, and in high school, very comfortable negotiating the El, which I can tell you is not always the case for kids growing up in the suburbs, you probably know that. He was very comfortable. He got very comfortable going through airports and doing taxis, public transportation. So what I'm saying is that the stuff that Dr. Sahgal told me, I ended up seeing it come true. When he said your child will benefit, he will not be – he didn't end up being my caregiver, but he definitely got to think of himself in terms that were outside of – well, his mom had to make sure that all of these things – we started thinking more creatively about how to get him around. He became more of a partner with me because sometimes we just had to brainstorm how we were going to get him – or how we were going to get around or get him to an appointment. And then, when he got older, as I said, he got very comfortable going to the beach on the bus. Just as recently as being in high school, he got a job downtown in a law firm and started taking the Metra train, the same train I took, with the lift on it now. He just joined Shelly and me in our commute. We weren't taking the same trains, but he just was very, very comfortable at an early age negotiating public transportation because he had to.
RH: Has he ever said, “Enough, I'm tired of the activism,” or “what about me” or “why do you always have to do these causes?” Have you ever had to explain that to him?
JPR: Well, no. I don't think so. I'm trying to think. I’ve got to think about it. That's one of those questions that you ask me now, and it may come back. Sometimes after you leave. I’ve got to think about it.
RH: Well, that's also how you balance family, this enormous amount of activism, and your priorities.
JPR: Yeah, well, I think that he – what is funny is that I think sometimes he gets – now that he's a little older, he feels a little safer about getting somewhat cynical. I think it's more – now that he's older, he's got a more sophisticated take on things, and I hear things more like, “Well, that figures. That's probably the way you see it, right, Mom.” Like always putting the disability – he actually knows my position where he sees the disability rights spin on it sometimes. I know you think this person should get – like, we'll be watching the Academy Awards, and he'll say, “I know you think that person should get it because they're disabled” or something. And I'll say, “No, that's not true.” So I think, in his own way, he challenges it. But in a respectful way. I think that it continues to make him, and I think it did in high school and grammar school, also sensitive to students and other people. [Telephone rings.] I might have to get the phone. If you could just grab it. Yeah, only because – if somebody's calling that much. Can we stop for a second? It's rung about three times, so I better see who this is. I told my staff I was with you, but you never know. As part of who I am, part of who we are.
[Recording paused.]
RH: Well, it's interesting the way you're talking because it feels a little like you're telling me how he relates to your disability, and I guess I was thinking about is the activism intrusive. Or is the activism and how you – do you have struggles prioritizing your family versus the activism, which is a second question?
JPR: I guess I don't really – it seems like you're assuming there's some potential conflict there, and I don't know where that conflict would be. I'm trying to think then.
RH: Well, I'll just say a question here is how do you combine family responsibilities and activist work? So they don't have to be in tension.
JPR: Yeah, okay, I would just say that actually, if anything, the way I combine them is I get Shelly and Lewis to help me creatively bring solutions to the table. More often than not, in our family, they're part of the solution team than – there isn't the tension of oh, there goes Mom again. It's more like, “Okay, well, here's how you might do this. Well, what if you did this? What if you did that?” I'll give you an example. I was on the train a couple years ago with the lift that I advocated to get, and the train pulls into the station downtown, and everybody got off the train, and there was no conductor. The conductor had left. All the people, all the passengers, got off the train, and the conductor went off to do his business. I couldn't get off the train. There was no way to get off the train. I couldn't walk down the stairs. I had a scooter, and you have to have somebody operate the lift. And I sat there, and I sat there, and it took me a while to understand that, see, activism is every moment, every day of my life. It's not like always doing these big initiatives. It's like, when you live with the kind of disabilities that a lot of people live with or family members live with, you are activating every single day. Your whole thing is how do I keep my sanity, how do I deal with this problem, is this a problem – like we were talking about selecting battles, is this something worth my energy to follow up on, I can only – do I want to sue over this? What happens when people are disrespectful when I'm trying to – is this my right? Am I going out –? Am I being unreasonable, or is this legitimate? So what do I do? The entire train is empty. There's no passengers there. The conductor has gone on to do something else. I'm on the train. So finally, another train pulls up, and those passengers start loading off the train, and I start yelling out the door saying, “Can somebody come, come, come?” I just had to wave somebody down. I said, “I'm the only person on this train, and I can't get off this train. Can you help me find someone?” So I mentioned this to those guys. Like we're sitting at dinner, and I'll say I couldn't get off the train today. I say, “What should I do?” And so Lewis will say, “Mom, did you call 9-1-1 on your cell phone?” I said no, I never thought of it. “Well, you could have done that.” “I guess I could have.” So, they'll immediately say, “The next time you're in that situation, just dial 9-1-1, tell them you're a disabled person, you're in a train, and that you've been left, and tell them exactly where you are.” And then the next thing, then we'd talk about –
RH: Now you could call the Sun-Times.
JPR: Yeah, now you can call the Sun-Times. But it was really scary. But those things happen every day. They happen every week. And they happen in all different ways. Sometimes they're endangering your safety. Sometimes, they're just people really insulting you and being rude to you. Sometimes, they've been with me when it happens. So because they are often witness to the offenses and the battles that I face, I would call them part of my team. They really become – as I told you before about my husband, there's no way you go through this where there's just me, and then there's those guys. It's like we're constantly going through these things together because it impacts the entire family. There is no such thing as a disability just affecting that person in any family. Other issues, yes, but not in disability, not with severe disabilities. If it was Lewis or Shelly, or if it was you and your partner, it would affect you. It would never be just her. It just doesn't happen like that. So the activism. This is why we have the girls' program because we've got to teach the girls how to advocate for themselves because everywhere they go – They're in school, and their bathrooms aren't accessible. They need to go to the bathroom. They’ve got to find a way to not only go to the bathroom but they’ve got to find a way to get that school to get their bathroom needs accessible right away. Because there's not somebody else to do that for them. They've got to do that themselves. And they’ve got to know that that's their right to do that. Then their parents don't always know how to teach that in them because their parents didn't grow up with that. So that's why I say with kids, that's why we learn – in my family, we've all learned this together, but in a family where the child is growing up with a disability and the family has been out there trying – and they're all exhausted trying to get the kid around or whatever, the kid is going to eventually have to learn, if they have the skills and they have the function, to do this themselves. They're going to burn out. They need a community. They need to have a sense of pride and entitlement of who they are. Where are they going to get it from? They're going to get it from us, from me. So my family doesn't get tired of it. They accept it as part of what I go through. And they're usually just there to go, “Oh wow,” or sometimes they'll just say, “Judy, you're way off the mark.” This person wasn't insulting you. You're PMS-ing. You've just had one too many, whatever it is, or we understand it.” So I think that because you are always, always, always, always, always dealing with some kind of either attitudinal or structural barriers in your life – and, again, I'm in a good neighborhood. But you're always going to encounter them, and even after getting the Metra completely accessible, things happen, or the handicap doors don't work, or the elevator doesn't work. You can never predict what you're going to be confronted with. Talk to anybody. Talk to anybody who's trying to get a kid around. Somebody that has spina bifida or somebody that has cerebral palsy. So that's why these parents wanted to keep this child a nine-year-old, because they figured that negotiating the system with a nine-year-old body, even though she's forty-five years old – probably won't live that long, who knows? I don't know. Because it's hard. It's hard. And it's the whole family that goes through it.
RH: You just said you can never predict what's going to happen. How has that shaped you, the fact you can never predict?
JPR: Oh, there's constant uncertainties every time I roll out the door – oh, yeah, every day. I ended up last year – actually, two years ago, I started for the first time getting visual migraine headaches from stress. And it was just too much for me. It was just too much. It was just because getting to and from work, dealing with my workload, dealing with my family – Shelly's dad was starting to decline, and my assistant had just died of cancer. It was just too much. Everybody's got stress points. But dealing with the normal stressors of life in combination with the uncertainties that were additional that I had to deal with, with society, like I say attitudinally and structurally, got to be too much. Dr. Kirschner said to me – she got me checked out with the migraines, and we just thought I just had too much to deal with to start having to deal with visual migraines because they're really disruptive. So she said, you've been talking about doing some kind of meditation or mindfulness training. I'm going to – as your doctor and your friend and your colleague, I'm going to urge you to take some time off and get this training, because we didn't want to go into more medicine and whatever. She knows from her patients how stressful trying to actually get to work and be a family member and just all of the different roles one plays when you're fully participating in society get to be way stressful for a person with multiple disabilities like me. She encouraged me to do mindfulness-based stress reduction, the Jon Kabat-Zinn technique [of] meditation. And I did it last March and April. And it helped me enormously. It helped me enormously. Because I went in there with transportation as being my number one thing because it's so unpredictable. Even the best transportation, like the Metra, that should be – I'll give you another example of something that happened to me on the train. And the train is better than the door-to-door paratransit. I'm on the train. I get on in Wilmette. I get to one of the stops in Evanston, and there's an announcement on the train that everybody is going to have to get off the train because there's some kind of problem on the tracks, like there's an accident or something. And they're going to have to get off the train and go to the El, okay? And we are at a stop that's not accessible, okay? There's no way for me. I'd get off the train, but I couldn't go anywhere. In other words, Wilmette is accessible. I get off the train. It's ground-level. Wherever we were, I was sitting next to a lady who happened to have a cell phone and was working for somebody I knew. And the announcement comes on the train and just says, “Everybody get off the train and go to the El.” And I looked at her and said, “Are we at a stop that if I get off the train – and even if I got off the train, can I get off the platform, and then once I get off the platform here, I am stranded out in Evanston in a wheelchair and it's cold?” I can't just get on a bus. I can't just get in a cab. So we're trying to figure out – we quickly find out that we're at a stop totally inaccessible and that even if I got off the train – and I can't get on the El because the El stop is inaccessible too. So down the road – it turned out that we just stayed on the train. Pam said she would stay with me – the woman that was sitting next to me. Thank God I had somebody. And the conductor said that he would stay with me too. At least this conductor wasn't leaving me. But I was going to have to sit on the train. What they said is they didn't know how long it would be before the train could get going again. So most of the people just shot up because they had to get to work, and they could walk, and they could get on the El. So I was stuck sitting on the train, and I just had to call the office and say that I didn't know if I was going to be on the train for hours or what, but I didn't have the alternative of getting off the train. So these things happen all the time. I just gave you two, which are – these are not bad things; they're just things that happen to average people. So, I started to say that I couldn't deal with all the uncertainties just simply facing me with the weather and the transportation – and I'm only talking about the train; I'm not talking about the people making me a no-show and the problems with the other transportation. I just said if I just focus on somehow reducing my stress level and the complexity of the uncertainties that I deal with, with just my transportation. I'm not talking about anything else. I'm not talking about my workload. I'm not talking about my health or my body, which was deteriorating. I'm not talking about worrying about my kids going to college. I'm just talking about my transportation. So I started learning how to do breathing meditation as a way to step away from things and break the cycle of anxiety and stress, just biologically, to get my system into some place of peace. And I learned – so what I do now is I do breathing meditation forty-five minutes a day for – I would say I'm pretty good about doing it six days a week. I was just telling my therapist it helps me enormously. And I think the other thing that's helped me with my stress level is the connection to the community here at Beth Hillel. The sisterhood I've gotten very involved with. I've met a lot of women here and the rabbis who I've mentioned. I have a large sense of community that's not just the disability community, and it's not work-related. So even though I have a huge support system at work, sometimes you need to have that sense of connection and support outside of your family and outside of your job. And not everybody has that for one reason or another, but I was fortunate enough to find it here through Beth Hillel. Once I started connecting up with the sisterhood and connecting up and coming to services on a regular basis, people started understanding my issues, and more and more people were coming forward, saying, “Well, if Shelly's ever out of town, or if Lewis can't drive you, or gee I'd like to learn more about what you're doing, or we know you can't drive and we know that you can't deliver these baskets or these bagel boxes or lox boxes or whatever they call them, but if you want to help make phone calls.” It became a place where I could connect and make new friends, and people accepted me for who I was and my disability, and I wasn't always turning to my family for all that support, and I had a chance to get disconnected from the workplace, where even though my workplace is a place for emotional support for me, it became like just a place in my neighborhood in my community, and then new things could start opening up, so meet new people to go out to see movies with. The whole thing, I started becoming even more integrated, which I told you is the hardest thing, is getting into that flow of being into a neighborhood or being into a community, going to restaurants, going to movies, making new friends, becoming comfortable with who you are so it's not just your family that is your only source of support and you're not burning them out. So those two things, I think – my connection with my synagogue [and] my connection with the mindfulness meditation. And then lastly, my therapy, working with Wendy on a regular basis to help me keep the brain injury, the post-traumatic stress, the stress in the environment in check. It's big. That's how I cope.
RH: I want to know what's most rewarding about your work for you.
JPR: The most rewarding part for me is creating community and sustaining that sense of community in a healthcare setting and knowing that people are directly benefiting from that. I gave you the example of me giving a lecture a couple months ago at Northwestern and the students responding to me and immediately referring a student that wasn't at the lecture to me. It was a young woman who had been brain-injured in an automobile accident and had some previous sexual assault trauma, and the combination was just doing her in. And she came to me, and she said, “Oh, my fellow classmates are telling me that I should have heard you. But I wanted to come.” She just said to me, “My family's got all these problems, and I'm disconnected from them, and I have this brain injury, and I had this sexual assault, and I'm having a really, really hard time. I just want to be connected with people who are going to help me understand myself and not dismiss my problems.” One of her problems was everybody that she knew on campus kept telling her, “Don't worry, you're fine, you're fine, you're fine.” But she knew she wasn't. She knew that she was internally torn apart. She knew that her memory had changed, she knew that her ability to grasp things easily with a brain injury had changed. She knew that even though everybody looked at her and said she looked the same, she knew that things were really, really hard for her. And she just really, really, really wanted some affirmation that whatever she was experiencing was legitimate. And then, she wanted to meet other people that she could respect and that she could see as leaders and successful, to help her see herself. Just like the girls, they want to see themselves; they want role models and that. So I think that we are so fortunate that the hospital environment that we're in gives us the opportunity to connect with so many families and so many women and girls. We can have the reward and the benefit of actually seeing the smiles on their faces or – see, that's one of the beauties of both disability activism and rehabilitation medicine. They're very long-term things. They're not like, you got it, and then you walk away with it. Once a person has a disability, they're always in need of disability support or disability activism, and they're always in need down the road in terms of some kind of rehab medicine. Rehab medicine is real different than acute care medicine. Acute care medicine, you go in for a problem, they fix it, you go home, and they don't see you again. Rehab medicine is that you've got this spinal cord injury, you've got this brain injury, you're going to be living with this for the rest of your life, you're going to be aging with this, you're going to be trying to have kids with it, you're going to be trying to work with it, you're going to be trying to buy a house with it, you're going to try to do whatever. And so you're always going to be back. It's real different. It's a different environment. So because you're in these lifelong relationships with people, you get to see people. We've had women coming in the center, we've got to see them come in maybe without a job or without a place to live or without a partner, find meaningful partner relationships, finding meaningful work with the goal of getting involved in school or whatever, and working with them, and having them contribute, seeing them grow. Just like sometimes the way you do in an educational environment, but it's not always related by their age. They could come in at age seventy, or they could come in – like this one woman did at age nineteen. So I think it was like what I was saying before with the transportation. The fact that I have had the privilege of being part of a movement that allowed us to establish and create concrete real-life real-time services and programs in my lifetime that are directly benefiting people now that may or may not last beyond me – I don't know – but the fact that they're actually benefiting people, family members now, it's very rewarding. It's not something – it's just immediately rewarding. I don't think a lot of people get to see that right away. A lot of times people are teaching, and they say, “Well, I hope I gave them a good education.” Maybe ten years down the road, I'll find out. But we can see this. We can see this. We can see the growth. We can see the movement. We can see the change in self-perception or the sense of entitlement.
RH: What do you see your legacy as?
JPR: I don't know. What do you mean by that?
RH: What do you think you pass on to the next generation? What do you think you've given the next generation? That's one way to interpret it.
JPR: This is funny. When we're with the girls – this is really funny.
RH: Maybe we should ask them.
JPR: They don't know. Think about the African-American community or even think of the women's community in general. We have to remind our girls that lifts were not always on the buses and that lifts were not always on the trains. Just like some people have to remind their kids that sometimes there were separate bathrooms and separate laundromats for people of color. Because they don't know, because they grew up with the benefits of our activism, these girls, we just say – they just think that well – they just think that buses always had lifts on them and that trains always had lifts on them and that polling places and voting places were always accessible and that there was always clinical services for disabled women and that there were always women doctors in wheelchairs and women lawyers in wheelchairs. So I think one of my things I bring is that I've always wanted to create more choices for people with disabilities, especially for women and girls with disabilities. So I like to think that I helped create more choices, whether it's reproductive health or ways of identity to see themselves, or like in transportation, just more choices to get around, or health care choices, they have more choices in terms of – and also I hope that I have helped reinforce a sense of dignity and pride and entitlement. I hope. I hope. I always see myself as stimulating a conversation that will be continued long after me in different ways.
RH: That's nice. I'm going to ask some of these questions, and we may have already answered them in a different way. And it may be just obvious because so much of your work has been around women's rights and disabilities. So it seems odd to ask a question. What have the obstacles as a woman been? But I don't know if there are any others, how you would answer that question if I just asked that question? Or any advantages that you've seen.
JPR: Yeah, it's really hard to answer it because my whole work has been built around dismantling obstacles, being a disabled woman.
RH: That's what it seems to me, too, it really does, but I just felt like maybe I should ask it a different way, maybe it comes to you another way. You've created – you can't tear apart the feminist, the disability, they're all interlocking.
JPR: The other thing, one of the things I just want to say that's very unique to us. Remember I told you that once we got recognized, it's been cool, is that once we became a center and we started getting at the table, so to speak, in women's issues in general, one of the first groups to embrace us was the gay and lesbian community. And the reason being is because both the gay and lesbian community and the disabled women's community have been marginalized by the mainstream women's community, but for different reasons. It was like, well, you don't really – and a lot of it had to do with reproductive stuff too. It's like either – now more and more women are choosing to have children. But because it was almost like the mainstream movement wasn't looking at women with regard to reproductive choice, and it seemed like they were embracing some of the dominant norm that we shouldn't be reproducing, or we weren't reproducing and therefore were not sexual, and all that stuff. So there were these things. So what I want to say is that I feel that like our lesbian and gay sisters, we had battles to fight within the women's community, among women, and I don't think people think of that that often. I think it's important to bring that to people's attention that it wasn't always us against either – when I say against – it wasn't us always trying to educate the dominant male-driven society. It was us trying to help other women understand who we were as women. So I think of it – I think that the question that they're asking is like in a more narrow way. A question like that, it's a contradistinction to whom, and you say men because there's two genders. But in contradistinction, I'd say, in addition to all of the stuff that we were dealing with, with regard to the male dominance in medicine or in transportation or whatever it was, there was even – the women's movement itself for a long time had embraced a lot of the dominant social values that were working against us. So it took us, as I mentioned before, a long time to start educating other women. I think that we were able to gradually – and as I said, in Chicago, I remember the first women who got us were the gay women, the lesbian women. They were the first ones that really understood us. And gay men understood us too. But not straight women, they were having a hard time. So I would say one of the advantages – or barriers, really – was that – I think that it's just interesting to see how the dominant social values get inculcated in your own gender, so to speak. So, when you do this education – and we always look at it as education and trying to enlighten people – it's this constant process, and it's not always a black-and-white thing. That's one of the things I learned, and I think for this section, I would just say it's not a – it's just very complex. It's not a Black-white, women versus men, able-bodied versus disabled-bodied, or straights versus gays or that. I'm just saying it's very complex. I think that one of the things that we've done with women's issues in the hospital is brought more attention to men's issues because when we first started the Women's Center, everybody kept coming to us saying, “Well where's the men's resource center?” And we'd say, “Well, build it. We're not going to build it for you. We built our own.” It's as if they were being mistreated because there wasn't a men's center. And what we had to explain to the men was the only reason there was a Women's Center is because women had organized to get it. So if they wanted a men's center, what they needed to do was organize and build it. So I think that we actually helped broaden – I actually think we probably helped people think outside of even the box in the disability community. I don't have the resources, and I'm not really mission-driven to doing things for teenage boys. But God knows they need it, disabled teenage boys. They really need it. They need mentors just like the girls do. So I feel like the work – that being a woman has helped me get people thinking in newer and more dignified ways about their abilities, and the things that they could do to help elevate themselves or promote self-determination. I like to think of that both within the women's community in general, in the whole able-bodied community, and in the women's community itself. So, it's just not a black-white – I don't think like that.
RH: You were talking about Hawaii, and so I wanted to hear about that.
JPR: Yeah, that's a personal thread, that's a real personal thread, and that's brand-new. This is hot off the press. This is really new. It's going to be interesting to see how this gets written up because I'll probably end up editing it somehow. But I've come to realize this many years post-Hawaii – I call it post-Hawaii, which is like post-injury – that I have two open wounds that will probably always be there to some extent, but they haven't been addressed as head-on as getting a job, getting married, having a baby, getting around, and transportation and all that stuff. And those are that I don't have – I haven't achieved yet what I would call a peace with Philip's death. I accept it. In other words, I'm not pretending that he's alive or anything like that. I've moved on with my life. I haven't gotten stuck in that. But you have to understand that at the time that he died, I was so ravaged, and it took me weeks to even understand that he died. Even when I said I did, I don't think I ever understood it. And because his family was in New York and I was in no shape to travel to New York and because of other things I've explained about my relationship or lack of relationship with his family, I never went to a memorial service for him ever. I've never been to a gravesite. And I've never – and because traveling – I can travel, but I generally travel with somebody, and it's not something that I would involve Lewis or Shelly with. In other words, I wouldn't say, “Shelly and Lewis, come take me to Philip's gravesite.” It's just something I wouldn't do. So, we've worked on different pieces of it in therapy over the years, and my rabbi and I are talking about it right now. It's very, very private, so that's why I say it's going to be interesting how I end up editing this. I've got some ideas. I've actually got two different ideas. One's big, and one's extremely tiny and personal. The tiny personal one is the one I'm working through with the rabbi. The rabbi I'm reading Heschel with. He suggested that we could work on having – because I've never had – now that I'm comfortable with my Judaism, inculcated in my Judaism, and I have a better understanding of Philip's Judaism, that he and – the rabbi and I could work on some kind of memorial service where I could actually have a Jewish – that's one thing. So that's one thing. It’s extremely intimate and very private. It's like the kind of thing – so that's hard because I wouldn't involve my family, and I wouldn't involve Shelly's family. I haven't figured out how to do it yet because it's a work in progress. But it's an open wound. And like I say, it may never – just the way certain deaths and certain violence in your life never get completely healed. But this one has remained open, unaddressed in the way – I feel like it needs more work. Maybe that's the way to put it. So the one way I've been thinking about is working on something extremely intimate and private with my Rabbi, and then the other is a little bigger, and this just surfaced. And it's connected to the other open wound. The other open wound is the wound I have with my relationship with the land of Hawaii. I use the word land because we were in an extraordinarily gorgeous place when we got hurt. We were outside of Volcanoes National Park, and we were on the Big Island. When people I know – when I told them where I was, and they went back to visit the park that we were assaulted in, they were blown away at the beauty and the splendor of it. Because it was such a violent and grotesque thing to happen to us, and people always thought of it as being ugly and dark, and then they went there, and they saw this spectacular place, and they were like, “Wow.” So I don't want to recapture the naïveté or the commercial/stereotypical whatever it was, the image of Hawaii that I had, even though the people were very, very kind to me and all that. But something needs to be addressed there. What do you say? Tikkun Olam? There needs to be an adjustment between me and the land because to be very crude about it, my blood and excrement and Philip's blood and his excrements, our DNA, are all commingled in that volcanic ash, is basically what it comes down to. It's a very powerful island. It's got enormous vitality to it. And there's a Hawaiian goddess by the name of Pele; she's got like a Shekhinah-like thing to her. In some ways, I equate the two in my mind. Pele is like the volcano goddess; she's got a fierce angry streak by mythology, but she's very creative, and she's the goddess of the volcano, which is where we were. I was back at the crime site once with the detectives post-injury while they were still working on the crime. And it was okay. I was with my sister, and I was with them. I think I went back to Hawaii for another – I think I was back twice post-injury, but within the first five years post-postinjury. And I feel like there's some kind of peace that needs to be made with my spirit and the land there, particularly the Big Island where we got hurt because it's a gorgeous island. It's an island that I actually wanted to live on with Philip. And it's not that I have anger or hatred, but there's just something that needs to get worked out there. There's something unresolved that I need some peace there. And about a year ago, a woman – I can't remember if I mentioned Terri Jentz to you.
RH: I don't think so.
JPR: Terri Jentz is an author of a book called Strange Piece of Paradise. Her book was featured on the cover of the New York Times Book Review last May, and she's been on 60 Minutes, and she's been on all this TV stuff promoting her book. And the book is a story of a woman who, in 1977, three years before my injury – I was injured in '80 – [in] '77 [she] was on a bike trip cross-country to Oregon and was camping in a state park with her girlfriend, they were together, and right outside of a volcano in Oregon. They were assaulted by a guy with a hatchet, and he chopped them. Terri's girlfriend, companion, became blind as a result of the assault. And Terri – took her a long time to understand that she had many, many emotional, psychological – she definitely had some physical injuries, but she didn't end up with severe physical disabilities; she ended up with cuts and gashes and broken this and that, but things that were able to heal. So she wrote this book. And the book is really incredible because she decides she's going to solve her own crime because there was not justice done. She didn't – it was in a small town outside of Oregon, and she decides she's going to hunt down the perpetrator that tried to murder her with the ax. She did stand up to him when he came after her with the ax, and he tried to run her over with his jeep. She's a very tough woman. So she wrote this book about this assault, this hatchet assault, with her and her companion back in '77. And then her whole journey and her whole decision to go back to Oregon recently to solve this crime, to take on the community, find out who this guy was, to do as much justice as she could do. And one of the Women's Board members at our hospital was so impressed when she read this book review; she said, “Judy, I read this book review, and all I could think of was you. All I just could think of was you. I want this to be the subject of our next book discussion.” Ginger and I started this book club with the Women's Board members. And I said “Okay, fine.’ The Women's Board at RIC is very well-moneyed, and whatever they want to do, they do. So they get this thing in their head that they're going to contact Terri Jentz and fly her out here for our book discussion, okay? So we all read this book. They contact Terri Jentz. This is all just recently. This was like last October. Her book was just featured in the New York Times cover Book Review in May, and they get her out here in October. The way they get her out here is they tell her about me, and they say, we're working with Judy Panko Reis. She and her companion were brutally assaulted. The story sounds so familiar and so similar. And so Terri's book is not only about her trying to identify this ax perpetrator, which she ends up doing, and she does see him. Got to read the book. Her whole journey to do this. But she does get some changes in criminal law in the state of Oregon. So that's big. And the other thing is that she writes a lot about violence in American culture during the '70s up through the '80s. It’s interesting because she really knows a lot about the murder statistics and the violent culture in the '80s. So it becomes this whole big journey for her. So she comes out because we've all read her book, and we're having this discussion, and she and I meet each other, and it was really intense. It was really intense. She was younger than me. My injury occurred three years after hers. My companion was murdered. Hers became blind. And she's a screenwriter, and she lives in LA. We bonded immediately, and the fact that we were both camping in state parks right outside of a volcano was really eerie. And so she said to me – she inscribed her book, and she wrote in this book – I didn't see this until I got home – “If and when you're ever ready to go back to Hawaii to make peace with the land or whatever, I will go with you, okay?” And I started thinking about this because I said to her the most profound message I got from reading her book was a need to reconnect with the land. When she went back to her campsite where she had been assaulted, she said the first thing she did was get down on her knees and kiss the ground. She's really into the relationship with the earth and the land. And she had this whole thing that she had to deal with, with the criminal justice system in the state of Oregon. I'm not interested in catching my perpetrator. That's not my issue. That's not. But going back to the site at this time in my life is very scary for lots of reasons. When she went back, she didn't go back alone. She always had people with her. So what I've been thinking about – and this is in an exploratory phase right now, Rosalind. We talked about it a little bit [in] therapy and just a few close friends. I've been thinking about going back to Hawaii to the site to make some peace with – there's a part of Philip and me that's still in that soil. There's just a part of us there. To me, there's more meaning spiritually for me to go back there to reconnect with him than to go to a gravesite. Because he was alive there with me. I tried to wake him up there. When I stayed in the tent psychologically for all those years, it was right there in that gorgeous spot, this powerful spot, this Pele, this goddess Pele Shekhinah place. So I've been gently probing the idea of what it might mean for me, what kind of healing I could possibly – I'm not using the word closure because it's not like – again, it's not that simple, and it's not that cliché. It's me making peace with the land, this gorgeous place, this powerful place of the goddess. The place where Phil and I, where our DNA, our excrement, our blood got all – the thing about it is it's all commingled in that lava soil, and that soil just all goes back into the volcano, that just goes out and builds more island. So it's like recycling. So to me, metaphorically, it's got this poetic spirituality to it. And this just came to me as I realized the sacredness and the value of Terri going back and making peace with the land where this violence occurred to her. And I'm thinking that – so I've already been putting together a little team of people that would go back with me. Terri would come. There's a doctor I work with at my hospital, Dr. Debbie Gaebler, who actually went to medical school with Philip, and she sees kids. She refers girls to my medical program. She said she would go back with me, so she's like a connection to Phil. I have one of my funders. One of my funders who funds my girls' program has a sister who's a member of the State of Hawaii Legislature. His sister is – and I met her. His name is Gary Wood. He's going to be at the luncheon, actually. He went to Hawaii last month to see his sister as she got sworn in for the legislature. He tried to track down the detectives that worked on my case. Again, not to apprehend the perpetrator but because he knew that I was exploring this idea of coming back to Hawaii in a safe way. And we had been talking about maybe getting a shaman – a rabbinic shaman, just kidding, just a joke. So, right now I'm exploring it. I'm just exploring it. I haven't been back. I always thought I couldn't go back. And it wasn't until I read Terri's book that I started thinking about going back in a safe way, with a team, people, and getting down on the ground and kissing it and reconnecting with the parts of Philip and me that are there, and the spirituality and the power of the Island. It's a really, really powerful place. It's a very sacred place if you believe in that. I do. It's where new islands get made. That's how the islands get made. It's through the volcano. And it was the last place I was with Philip. So that's personal, that's not work-related, that's not family-related.
RH: Do you have any imagination of what might be gained from that for you in your life?
JPR: I think the main thing for me is, as I said, I have some unresolved issues about connecting with Philip's death and with regard to my relationship with Hawaii. And it's not the people, it's just the whole thing, the whole kit and caboodle of it. I'm hoping that – it's like this. None of these things have prevented me from going on with my life. I've obviously had an extremely – so I don't want anyone to think that I'm stuck in something, because obviously, I would have never gone to school, would have never become as functional as I am and as accomplished as I am if I was stuck in not being able to get beyond Phil's death or – if anything, what I've done is I've just pushed them very down. So rather than saying that they're things that have ever been barriers that kept me from going forward, I think if anything, I've just buried them so far deep inside me that I – because I've been so caught up with survival, basically is what it's come down to; I haven't had the luxury. I just haven't had the luxury. My kid is grown now. Our jobs are established. I've got a network of support. I'm not going to have any more kids. We've got our financial base that we're building for retirement in the future. I'm at a time in my life where I have the head space; I have the spiritual and psychological confidence that I didn't have before, where the space in my heart and my head is there. It can come up now. It's safe to come up now. And I may have the energy and resources to address it rather than just keep pushing it away, and just say, “Well, okay, that's in the past, and I'll probably never come to peace with Hawaii.” It's always going to stay this scary, crummy place for me, even though it's beautiful for everyone else, and I know that people are really nice there, and I'll probably never really get to reconnect with the reality of Philip's death in a way other than thinking of some abstract gravesite and some abstract funeral that I never attended. And so I think it's not a necessity, it's a luxury for me, the way to look at it. Let's put it this way: if you were an adopted kid and you had this gorgeous life with your adoptive family, and you knew you had these biological parents in your life somewhere along the line, but you were really busy building a creative, gorgeous life, getting married, having kids, and somewhere way down the line, it finally occurs to you that you've got the ease, the luxury, the space, the resources to go track down your biological family, and you do it. It gives you that kind of satisfaction. Would you be able to live a functional life and fulfilling life without it? Yeah, of course. Not everyone, but – so it's like that. I'm trying to give you an analogy of what it would do for me. It's not anything that I couldn't be successful without. But it almost feels like I've earned it finally. It's finally – it's got the ability – and you know what, Rosalind? I really think from doing the meditation that I've actually been doing, this forty-five minutes every day on a weekly basis, it's like that helps clear your head. I don't know if you've ever done it. But it really helps you open up yourself to maybe emotions or desires that you probably always had, but you keep pushing away because you – not in a bad way, but because you just are trying to get on with getting your kid into college and getting yourself on and off the train and making sure that your husband is able there to take care of his father and his aging mother, and your own parents as they start to get older. You’ve just got a lot on your plate. I think we all have those issues. Those just happen to be mine.
RH: I love the way you frame this. It's so interesting.
JPR: What?
RH: Well, just to frame it as a sense of the ease, the headspace, the luxury, the resources, you've earned it. The framing is not about resolution and closure. It's this other direction.
JPR: Yeah, it's moving – I tell you, I always go deeper, and I always go beyond. It's more like it's either a transcending or getting deeper into myself because it'll bring a new richness to everything else I do. It'll bring a deeper richness to my relationship with my family, to my relationship with my synagogue, to my relationship with my work, my relationship with my friends. So that's the way I look at it. But it's more about getting richer and deeper or transcending where I've been with it. It's just reframing it in a deeper and more rich way. Like I say, it wouldn't be a disaster if it didn't happen.
RH: Well, and I guess we're always better – when you talk about going deeper and beyond.
JPR: Heschel is big about going deep.
RH: We're also better when we can go into spaces that we haven't been able to go into. Because it literally and psychically makes your world bigger.
JPR: Exactly. It's an adventure. It's another adventure. It's completely new. And the other thing is that – I don't know about you – I know you were talking last time about maybe thinking of new ways to keep your benefits up and explore different opportunities, whether it's in academia or whatever. Once you start on a course that you've never been on before, whether it's starting a women's center, taking on transportation – and this would be that for me – once you really make that commitment or even opening yourself up to the possibility, it's amazing how many things start coming your way to help make that goal maybe either – it starts defining itself along the way. Like this guy Gary Wood, my funder. He just sent me a book on shamanism. Just sent it to me. He said, Judy, “There are shamans in Hawaii, and we just got to find the right one. And one of these detectives that you worked with is actually a native Hawaiian, and he may have some contacts for us. And you can count me in. You want to go back to Hawaii, I'll go with you. Deb Gaebler will go with you. Terri Jentz, the author, will go back with you.” It's like things start coming together. And then after – by that time, it starts developing a life on its own. And it's not a question anymore of if; it's a question of when and how. So I don't know. That's why I say it's something I've just started to seed, S-E-E-D. I don't know if it'll blossom or not. You never know.
RH: Do you have any more work aspirations? You're at the center. You're still there. Is there some unfinished business and things, directions you want to go with –?
JPR: Yeah. I definitely need to cultivate more leadership for the center itself. Like I told you, I bring to it a certain set of experiences and a certain set of skills. And a good leader always makes sure that there's leaders behind her or along with her. They don't have to think the way I do, but I definitely want to make sure that I have a leadership in place, whether I'm not there temporarily or forever. So that's one aspiration. This upcoming year, I definitely have some very specific things I want to start looking at. When I say start exploring, like I say, it may end up being nothing; it may end up being something. I really want to start exploring more about disabled women vets in the US. I want to do a little bit more with looking into the JCAHO paper, looking more about trying to get JCAHO to pay attention to us. I'm on getting safety intertwined with disability-friendliness in a hospital setting. I know I want to write an article. Another woman and I are talking about doing an article for Women's Press on some of the disturbing issues that came out of this Ashley X story. See, I'm always interested in educating the women's community about this because women are caregivers to kids, family members, parents with disabilities, spouses, partners, friends. And so I really want to do more writing on issues of reproductive rights and women with disabilities, girls with disabilities like Ashley X. Do more on health care access through the JCAHO stuff. Those are just some of the things I want to do. There's always these things that keep opening up along the way. I work in an extremely rich environment in terms of ideas. There's always just so much going on that we can barely keep up with it. So those are the ones right now that are driving me. But probably [in] another year, it'll be a whole other set of things.
RH: Do you have any – I guess how I'd like to finish and then ask you if you have anything else to say – is if you want to talk about your fears for the future and your hopes for the future.
JPR: Personally and collectively?
RH: Yeah.
JPR: By the way, the other goal would be to try to connect more internationally. We're continually trying to do that, but we don't have anything really systematic. So we get a lot of requests, and we do what we can, but so I stay involved in disabled women's and women's health issues around the world, not just in the United States. As far as my hopes and fears, I’ve got a real fear for all of us about healthcare. I'm really terrified that the healthcare system will not be able to support Americans in the way – in a safe and a civil way that ensures people's dignity and their human rights. I'm very, very concerned about it because we seem to be better at creating disease and disability than we are about either preventing it or – and I'm not saying I want to prevent disability from happening. I really don't give that message. I'm talking about creating disability through war. I feel that there is – I don't think there are enough people that really understand the crisis that we're all going to be facing with regard to – there's a severe nursing shortage right now, and who's going to take care of all these people that get Alzheimer's and broken hips and arthritic and – it's just going to happen. It's just going to happen. Never going to have anything like that. So I'm close enough to the health care system to know that there's probably going to be more people. And the way insurance is going in the country, if anything, last I heard is they're trying to privatize Social Security, they're trying to decouple insurance from the employer, and if they do that, that's fine if there's something in place, but [they] haven't talked about doing anything else. So I don't really see that we are headed in a direction where there's much realism about just like – let's put it this way. I'm real good with analogies. When we went to war, there was a naïveté on the part of those that brought us to war about how long we could be involved and what the costs of it would be in terms of human lives and disability. Well, I don't think that there's just a realism in terms of what we're in for, and I don't think that – I think it's easier to just go about our business and act like it's not happening, that there just isn't an infrastructure that's going to be around. Right now, they've just taken a lot of money out of Cook County, real serious, real, real serious. Real serious. And so I feel like just the way that the military and the government were totally blown away with the number of disabled vets that they had to deal with, and they were totally – they just went into war thinking that whatever vets came out of Afghanistan and Iraq, they'd be able to handle. And they're coming back with all these brain injuries, and I knew right off the bat – because I just know there's nothing simple about this stuff, I knew that this was going to be years and years and years and decades and decades and decades. So I don't feel that the country is any better prepared for supporting the medical and health needs of an aging population than they were of supporting the health needs of the vets that got hurt. See, it's like this. People are living longer. The longer they live, the more there's going to be a need to continue to support their needs. And so what are you going to start doing? Rationing health care? And what's that mean? Does that mean the poorest people again aren't going to get it? Is that going to mean – it's just, what's it going to mean? Is it going to mean that every time you're pregnant, they're going to make you do an ultrasound, and [if] they find out if you've got a disabled fetus, they're going to make you get an abortion because it's going to be too expensive for the system to carry the needs of a disabled kid? These are the things we think about. Rather than making the environment more accessible or promoting more health or whatever. There's a serious – in my mind, I'm terrified. I think if you're over the age of forty and you're not thinking about how you're going to get your healthcare needs met within the next twenty or thirty years, you're being very shortsighted, because nobody's going to take care of you. It's not like somebody's going to step up and say, “Oh, here's what happened to all the people that are uninsured.” It's just not going to be like that. It's not happening now. And I don't see – what I see, what's going on in medicine, we need nurses desperately. Everybody needs nurses. And nurses still need to get paid more. There just needs to be – so disability, home care, like I said before. Very terrified about that part. I get very nervous about – I know what it's like to lose function, and I know what's going to happen when people, like lots of people, start losing function. Is it just going to be the rich people that are going to get the dialysis and the heart care and effects of a stroke? What's going to happen? So that's very scary to me. I see those as – the thing that I'm hopeful about. Those are the scary things. They're easy to talk about.
RH: Or where do you find hope?
JPR: Where do I find hope? Well, let's see. Well, one of my heroes that I've never met is Thich Nhat Hanh. And what I learned from Thich Nhat Hanh, the reason I started becoming familiar with his work, is because he lived through Vietnam, and all of the mutilations and all of the murders and all the deaths and all the genocide. And he likes to say that smile meditation – do you know what smile meditation is?
RH: I actually do.
JPR: Smile meditation is a very powerful tool. So because I'm not a good walker and I'm not a driver, but I'm on my scooter a lot, the one thing I do do is I do a lot of smile meditation. And I have to believe that visionaries like Thich Nhat Hanh, even though his influence is still pretty limited, and I know there are others too – I do believe that there's always going to be a tension between violence and peace, so to speak. There's a yin-yang kind of a thing. But I think I find hope through knowing that – you and I talked a long time ago about the – what do you call it, the dialectic, right? The dialectic. I feel like there is always going to be this dialectic. There's always going to be this yin-yang. There's always going to be these forces of aggression and passivity. So I find hope in knowing that other eras, other lifetimes have encountered some of these same tensions but in different ways and that through the conflict, sometimes new forms emerged, new ways of being emerge. So I can only hope that through that spirit of these clashes and some of the challenges that we are facing locally and nationally and collectively as humans, even though they're just small voices and small efforts like smiling, I genuinely find hope from that. I have to. I have to. It works for me. I think you have to give some belief and credence to the small things because a lot of times, the big things just don't make it.
RH: That's nice. So is there anything else you want to talk about that we haven't covered?
JPR: See, the problem with that is I usually – it always happens like in the middle of the night after you've left. So I don't know. I can't think of it right now. I think it's important to just make sure that – I should say one thing. I haven't talked about my brothers, and I really should talk about them and my sister. I talked about my mom, and I haven't talked about my dad. So I really would like to talk about them. Talked about my mom. My father was the person who taught me how to smile, okay? So we can work that in somewhere because I'm going to end with a smile. And I want to be real clear I'm not talking about the patronizing disability smile, the little kid smile, I'm not talking about that kind of smile. I'm talking about genuinely doing smile meditation. My father always told me – just like Jerre Levy told me I had a smart brain, my father always told me I was more attractive when I smiled, which is probably true of everybody, but I took it real personal. So he taught me that a smile was going to really help me open people's hearts and sometimes their minds, and he instilled a sense of Panko power in me. That was Panko power. And a lot of that Panko power comes from smiling. So that's my dad. And I have three brothers, Mike, Mark, and Mel. And then I have a sister Geri, G-E-R-I. Because I was the eldest of five children, I was in this unique situation with my siblings where I was one of the siblings, but I was also often this bridge person between – I was like the authority person in charge when my parents weren't around. Like a lot of – this is real common in Catholic families with a lot of kids. The elder sibling becomes like the little parent. And so, in a lot of ways – I was changing diapers for a long time when I was in grammar school. And we all grew up together, but they were also my younger siblings; they were kids that I nurtured. When my injury occurred, every single one of my siblings, every single one of them, was there for me in their own way. My brother Mike invited me to come and live with him. He was a bachelor. Here he is – what? He's like a twenty-seven-year-old guy living on his own. I didn't choose to do this with him. My brother Mark was newly married, brand-newly married. Was living down in South Carolina. Flew me down there, and I stayed with him and his wife. Again, just traumatized, still learning how to walk, just recovering from brain surgery. My brother Mel also was living in Denver. He actually was the first family member to fly out to Hawaii right after the police called to be with me. And my sister was just nine years younger than me; [she] was always there to help me. She went back to Hawaii with me when I had to go back for the first time with the police. And believe it or not, because of where I work, I can tell you that many people go through episodes like me and have no family, or they have family and the family, for one reason or another, cannot be there, whether it's because they've got other problems, or they're dysfunctional, or they don't have the resources. And the fact that every single one of my siblings and each of my parents were totally committed to driving me, to housing me, to assisting me, to networking with me, to get me back into the workplace, to get me to school, to keep me socially active, to keep me physically doing my physical therapy – I could never have ever had even the ability to connect with Shelly, to even start thinking about getting my life back together again, if I didn't have the support of my family every inch of the way. Even when I got married to Shelly and – we don't have to put this in the text – and his parents didn't come to the wedding, which I told you about, my brothers and sisters were there, my parents were there, and they made it all very special for us. And when I was converting to Judaism, they completely supported it. They were always very proud of it. They were all at Lewis's bar mitzvah. The Catholic priest came to the bar mitzvah. I talk about the disability journey and the Jewish journey being a parallel journey. They were there with me every step of the way in both journeys. There was never a point where my issues became too much for them. I'm sure that psychologically and emotionally, it became overbearing for them at times. But I'm very blessed that I was never made to feel like a burden, and that it was just that my brothers and sisters, to this day, they continue to seek my advice on things, and I'm still a guide for them and in a lot of ways a mentor for some of them in our adult life. I can just tell you family is not always there, and it makes a huge, huge, huge difference, and they're not always there when you choose to change religions, and they're not always there when you become so needy and so dependent on them. The doctors said that when I was hurt, they really felt that the support of my family and my friends was unusually wonderful. That was one of the most determining factors in terms of how somebody was going to end up coping with whatever it was. Two things. One was their premorbid personality disposition and the type of family support/social support they would have going into whatever severe disabilities they were going to be living with. It's just the kind of thing that sometimes makes or breaks your experience as being able to pick up the pieces and move forward. So I haven't talked about them because I've been focusing on the Jewish stuff. And I think it would be remiss to have an entire oral history and not mention my brothers, my sister, my father. I mentioned my grandparents in passing. And my son Lewis and Sheldon – very, very key. It's almost like there's so much there, that they're so much part of my life, that I have to remember that like – and then the whole thing gets written down, and they'll come to me and say, “Why didn't you mention me?” And it's almost – so I don't want to do that. I want to make sure that they were – they were blown away. You can imagine. They were totally blown away by what happened to me. And I know that – I'm the godparent, I'm the Catholic godparent, of two of the kids of my – Mikayla is my goddaughter. This is Mel's daughter. And Tom, my brother Mark's son, Tom. I'm the godmother. So even after I converted to Judaism, I was invited to be their godmother. So I went to the church, and I went to the baptism with them. And this is real integration and real acceptance, and like I say, everybody coming to Lewis's bar mitzvah. There's always been a real sign of – real show of embracing, both families embracing one another, despite how rocky it was at the beginning with Shelly's family. But my family, in particular, has been – people always say, “Oh your parents were probably really upset when you were converting and your brothers and sisters and all that.” Again, it was never that way, so I think it's really important that we include that. And that's all I have to say.
RH: Well, thank you very much.
JPR: Thanks for staying so long.
[END OF INTERVIEW]