Chapter 1: Early Career
05:17:21:20 - 05:17:56:27 Lisa: My name is Lisa Sonneborn and I'm pleased to be interviewing Nancy Thaler at Temple University in Philadelphia Pennsylvania on January 19th, 2012. Also present, are videographers Lindsey Martin and Aggie Ebrahimi Bazaz. Nancy, do we have your permission to begin the interview?
Lisa: Thank you. And I also wondered if you could tell me where you were born and in what year?
Nancy: I was born in 1949 in the town of Kingston, Pennsylvania.
05:17:57:24 - 05:19:03:04 Lisa: Thank you. Nancy, you've worked on behalf of people with intellectual and other disabilities for over forty years now?
Lisa: Um, but your undergraduate degree was in music.
Lisa: So I'm wondering what career you initially envisioned for yourself? Nancy: Um, no career. I was a musician and I loved music and I just pursued studying music, and while I was in college studying music, near the end of the four years, I saw children with disabilities in the town of Scranton, where my husband went to school. We were dating and I would see students who worked at the university who were taking care of kids with disabilities at a facility in Scranton called Keystone City Residences, I think. It was Keystone something. And so I tucked that in the back of my head. Never talked about it, thought about it. And then when I finished school I walked into that place to get a job.
05:19:04:00 - 05:19:52:15 Lisa: Had you had prior experience with disability?
Nancy: Nothing. Um, my experience exposure was grade school and high school, each of those schools had a class with six to ten kids with disabilities. I now know pretty mild disabilities. And they were to themselves in high school. It was absolutely, literally, the room in the basement next to the boiler room, without any of the desks or accommodations or any nice things that the rest of the students had. And we never mingled with the kids, so I just saw kids in those two classes and I think instinctively didn't like it, but didn't think about it much.
05:19:54:02 - 05:23:09:26 Lisa: When you walked into the institution and asked for work, what did they advise you to do?
Nancy: Well it was 1971, and I now know there were a whole bunch of parallel things going on. And what was going on was the settlement discussions and the PARC consent decree so the intermediate units, Pennsylvania intermediate units, apparently were set up by them in preparation for the settlement agreement and so when I went to work in this institution, they said to me, you know, 'You have a college degree, you shouldn't be working here. You should be teaching.' And they sent me off to the intermediate unit to apply for a job, which I did, and I became what was called a permanent substitute teacher. That is I didn't have a degree in education and so I could serve as a substitute teacher. And they were very eager to sponsor, to pay. They paid your entire way to get a graduate degree in special education, but I didn't want to be a teacher. I already knew that from being a musician. I didn't want to be a teacher. But I subbed permanently and went back to the facility, to Keystone, and said, 'But I still want to work here at nights'. And so I both taught during the day and worked at night. And oddly enough got assigned a lot to the institution to teach because in 1971, kids didn't go out to school and any of the children that were institutions had the school brought to them so the intermediate unit ran classes in the institution. So I would teach during the day and work with the kids at night. And so I mean, it's not a mystery to me how - why it was I was drawn to do that. Despite my love and devotion to classical music, there's a - we're all complex beings and there are many things going on simultaneously and I have a reformers streak in me. Probably from my family. As with everybody, our roots go back to our family, and my mother and father - children of the depression - really stood with poor people. And the worst thing you could ever do in our household, the worst sin you could commit, was to ever think you were better than somebody else. And I think from that I absorbed some sense of standing with people and defending social justice, although those terms were never used. So in my childhood I had periodically ideas about doing some kind of helping profession and when I saw the kids, I couldn't - I think in retrospect at a subconscious level what I recognized was, of all the people in the world, these are the folks who are the most rejected, the most denigrated, the most at risk and I was simply at a very deep emotional level, drawn to help. And so went there to help.
05:23:10:12 - 05:25:08:18 Lisa: So would you say that some of your 'drawn to social justice' issues were informed by the Civil Rights movement?
Nancy: No, it really was the Kennedy administration. I was 12, in 1960 I think, when he ran for office and being a Catholic in a very wasp community, we were very aware that John F. Kennedy was Catholic so there was this awe of this is a good guy. And then I was very drawn to politics and government and so a bunch of us got very involved in the election in the way 12 year olds can in school. Debating and following and etcetera. And so when he was elected I remember coming home from school in the afternoon to listen to his news conferences. And this is the John F. Kennedy of the Peace Corps and a whole new generation and so I have to say his presidency is maybe one of the most pivotal things that happened in my life. Because I listened to what he said and I pulled out of those years the social reform elements, the idea that we're all citizens of the world and we all are each other's keeps, etcetera, etcetera. So, so by the time I was a senior in high school and going into college, despite the devotion to music as I said, there was this other social reform, social justice, maybe join the Peace Corps. When I was probably a sophomore I entertained quitting college and joining VISTA. So, you know, all that was going on at the same time. I was living a parallel - two parallel lives within myself I guess. Um, and so just the kids were compelling. Very compelling.
05:25:09:09 - 05:27:22:08 Lisa: Nancy, you were working as a permanent substitute teacher. You referenced this was at a very remarkable time, probably, for Pennsylvania's education system because of the PARC consent decree and the incredible influx of kids with disabilities into schools. Were the schools prepared to accommodate kids?
Nancy: I'm not sure there was an influx. And I don't know the history completely, but certainly from the little spot in Pennsylvania that I was working from, the kids weren't going to the public schools, the schools were organizing classes that still - that were segregated and isolated. They were segregated schools or segregated - in the case of kids living in institutions, both the public ones and the private ones, the [ph] came into the schools instead of classes. So I don't think in the very early years there were a lot of all the kids going. I think that evolved over time as it would. I mean I don't think the schools were prepared for the influx of thousands and thousands of kids with disabilities when up until that consent decree was signed, they didn't think they could learn and come to school. So, I think it was a clumsy evolution but I'm not sure how else - I do think, though, that personally think that the eagerness to get all children in school quickly spawned this concept of these intermediate units in Pennsylvania, which as I understand it, were created to facilitate the introduction of the kids into school, to help make it happen. And in far too many cases they've become segregated school systems, and an impediment to kids integrating into those schools. I think a handful, maybe one or two, are not that at all, but we still have in Pennsylvania free standing segregated special ed schools, and that's really a shame in the state that had - that was the foundation to the right to education. That happened here in '72 and the law nationally wasn't passed until '76. And so that's not a good legacy, and still needs lots of work.
05:27:22:08 - 05:28:22:00 Lisa: Why do we still have them, do you think? These segregated schools and intermediate units.
Nancy: Um, it's very hard to transform things that have been around for a long time, particularly if the transformation means they stop existing. I think the intermediate units are no different than the state institutions, or any institutions. People who know them, people who go there, people who work there, families, become very, very invested and then they have an allegiance to them and then there are - that becomes an obstacle, small 'p' political, big 'p' political, to making any changes. Once they're there, it's hard for people to imagine life without them. Until they're all gone, then people can't imagine why we needed them. But we're in that transition. Both with institutions and intermediate units at Pennsylvania.
05:28:25:00 - 05:34:53:25 Lisa: So Nancy, you had said that you didn't want to teach, that certainly wasn't your goal. So, what was your next step after teaching?
Nancy: I'm not sure there were any steps. In 1971 when I started working for the intermediate unit in Lackawanna County as teacher and simultaneously working as what was then called a child care worker, they were called in 1970, in the institution. By summer, I stated in January, by summer I knew that was it. I wanted to take care of, not teach. And quite frankly, because I could see in the taking care of there was a lot more teaching than there was in the classroom. And my husband at that point was now graduating from college. I finished six months early, and I had been bringing the kids home and said, 'why don't you come for the summer, summer job?' In 1970, college graduates weren't obsessively career oriented. We didn't worry about money a whole lot and we were just exploring life. I think kids now are far more career oriented when they leave school and they have to think about a job, but in 1970 we didn't have to so much so we could just fall into things. And we were - he came and joined me for the summer and we worked and very quickly he fell in love as much as I did. And we started thinking in an evolutionary kind of way, we want to do this and, but instinctively we knew that this institution was a high-rise complex in the middle of Scranton and the good thing about it was the kids were out in the town all the time. But the bad thing was they were living in dormitories in this big building. And so our instinct says, there's gotta be something better than this. And in our heads we invented a concept of a group home and started writing around to a lot of state arcs, about 15, 16 state arcs, asking, 'what do you have? We're interested in doing something.' And we didn't get much back, but the director of Keystone, and man named Gene Langon, was very involved in the Pennsylvania's Providers Association [for the Retarded] PARR. An organization I was later the president of, incidentally. Many years later. But Gene Langon was exposed to other providers and one was Jim Varner at KenCrest. And Jim, in 1971, had the same idea and I suspect that he invented it in his head because around this time the office - no, the Department of Public Welfare, there was no office of Mental Retardation back then but by then things were brewing up. Pennhurst was thinking reform. They'd brought in [ph] Nebraska and so the department has proposed in the legislator funding to open group homes. And Jim Varner at KenCrest was very supportive of that. Interesting he was running an institution, but he was very supportive of this concept, and impatient for it to happen. So he took his institution money and opened up a six person group home in Kensington, Philadelphia. And so our executive director at Keystone said why don't you go talk to Jim? And we did. And we spent a day visiting the group home and spending time in his institution. And we were very young, we were very little. We were, I think I was under 100 pounds, my husband was very little, we were little people. We looked like kids, and I remember Jim said to us when the day was over, a day that was orchestrated to discourage us I believe, because we just didn't look like we could be serious I think, and he looked at us and said, "Do you understand that I'm asking you to be parents to these kids?" And we both said, "Yes, yes, yes, yes. That's what we want to do, that's what we want to do." And so we moved there and Jim hired us, but it took the Pennsylvania General Assembly a little while to pass the legislation, and then when they did the department couldn't use the money for group homes because of L&I regulations and obstacles. It took a long time to work through, so during those three years where we waited, we worked in the KenCrest Institution waiting for the group home to open. We were pretty dedicated. Before all that, though, before we left Keystone in that six months when I graduated, and before Carl graduated from college, we did try to join the Peace Corps, at a period of time when they had enough English teachers and were looking for people with concrete skills. So I always often joke and say we were Peace Corps rejects. But more about that social reform desire that I had. So at any rate, we ended up at KenCrest for three years and then moved into Philadelphia to open a group home at the time that the Pennhurst case was going on and Judge Brodrick at that point, in 1974, had ordered that - I believe it was an order, or perhaps it was just a policy the department put in place, but I'm pretty sure it was the Judge's order - that half the people served would come from institutions and half would come from the waiting list. Even back then people were concerned about the waiting list. So the group home we opened had three children, adolescents, from Pennhurst and three that came from their families who were on the waiting list in Philadelphia. And I think in the meantime, during that three years, what the state did with the money was at the best of my knowledge, again, was to create the first-family support program in Pennsylvania, and that's how family support got started.
05:34:54:05 - 05:35:18:15 Lisa: What is family support, Nancy?
Nancy: I'm sorry?
Lisa: Can you describe family support or at least what it was at that time?
Nancy: The idea was that there were families whose children were living home with them who had no services at all, and even in 1971 no school, and the idea was to use resources to help those families. Respite care was a big service that was offered to families I think at the time.
05:35:20:01 - 05:42:22:29 Lisa: Nancy, I think perhaps one of the happiest outcomes of your time working at institutions was meeting your son.
Lisa: I wonder if you could tell me a little bit about him and how you met?
Nancy: Sure. Um, when we worked at River Crest starting in 1972, when there were all children at River Crest, about 100 kids, and everybody that worked there was young. We were all, most of us, newly graduated from college, none of us caring about how much money we made, and we didn't make any, and we all had a good, we had a wonderful time working there. Our peer work, we had a great time working there. Everybody loved the kids and we were very creative in undoing, trying to undo or compensate for the obstacles in the institution to having a typical life, etcetera, and a lot of the staff took the kids home on the weekends. That was a pretty common practice. And Aaron had come to the institution probably shortly before we did, I think. He was seven years old. And Aaron was an incredibly adorable little boy. Very, very, very active. And everybody took Aaron home once, maybe twice. He was very, very hyperactive and he could only say the words, "I go home." And he said that to everybody which is how he got to go home with everybody. Um, Aaron had, we learned much later, had been in nine foster homes between the ages of five and seven, and then institutionalized. He was in the Philadelphia Child Welfare system. So he'd been in nine foster homes which explains why he kept saying, "I go home." Um, even to Santa Claus. Um, and so we were taking Aaron home on the weekends and my husband and I were very energetic and lots of love, and we kept taking Aaron home on the weekends, and really got attached to him. And on the assumption that when we moved to Philadelphia, Aaron would just move in the group home with us in Philadelphia. And that turned out not to be. And it's a sort of little sub story of the whole group home movement but the group home that my husband and I moved into was in lower northeast Philadelphia, in the Crescentville section. And, we were really quite welcome by the community. There was a family across the street that had a little boy with down syndrome, and we were really very welcome. And during the process of getting the home and planning everything, the agency said we could only take kids in that home that were from the base service unit home was in. And, turned out to be a relatively common practice for a few years in Philadelphia. And Aaron wasn't from that base service unit so we had to find six kids who were. Now three from Pennhurst and three from the community, so Aaron didn't count. So, in the throws of doing that we met all these kids, and these kids came, it was really wonderful. But when we moved in before the kids, Aaron was still Aaron. Aaron was coming home with us every other weekend and we had no intention of changing that at all. So Aaron came for a visit on a weekend before any of the kids moved in and um, and the community blew up, pretty significantly. The - we heard about it by the next Monday and the community blew up because Aaron was black. And, this is a white community and a white based service unit. This is 1972, and so nobody could say that out loud to us. Nobody could say it. And then it would kind of recall to it in the six months prior to moving into the group home that folks in the agency were kind of suggesting we sort of break ties with Aaron because he couldn't move in. And we found that odd, but life goes on. You don't pay attention to it. So, actually what has happened was, an unwritten informal agreement, never to really be articulated between the agency and the base service unit in the city, that the house would be all white. Because this is a community that was very open to a group home when almost no communities were, and so we found ourselves in a racial social justice issue, not a disability social justice issue. And so it got pretty nasty and the agency changed executive directors and a new one came who was pretty outraged by the whole thing. And it was a year of battles between the city and the base service unit and the agency, ostensibly about other things. Parking, quality of care, I mean, other things, but always about this. And it got so negative that after two years, either the agency was going to terminate the contract or the city was going to terminate the contract. And the Pennhurst trial was going on at the time and so my husband and I went to the trial one day and looked at the back of the building when it was over, and went to the car and I said to him, "You know that Lawyer up there? Tom Gilhool? Why don't we talk to him?" So we pulled Tom aside and my husband spent the evening in their house talking to him, and over the next week Tom cross examined city officials about this group home. Is it good? Do you like what's happening there? Then why would you be terminating it? And he met with the state regional office and said, "This is unjust and wrong," and Tom Gilhill stopped it. And Aaron stayed with us for four years. Eventually we got guardianship and he moved in with us. And we had black staff that were initially not welcome in the neighborhood, but all things eventually work out and people learn tolerance and acceptance and it worked out just find. But it was an interesting chapter in our lives and an odd little thing to happen in the midst of trying to do things with people with disabilities.
05:42:27:20 - 05:43:02:09 Lisa: When did you first feel like a family? You and Carl and Aaron?
Nancy: Oh, probably right away. He would come every weekend. In the institution, children went home with their family every other weekend, that was the pattern. So every other weekend they'd hardly be, there'd be very few kids and all the families would come on Friday, and when they did that, Aaron went home with us on Friday nights. So we were right in that pattern, rhythm, routine. And all the holidays he spent with us, and he came to my - my family has a farm - we'd go up there on the weekends, go to Baltimore with my in-laws and he was absorbed into the family pretty quickly.
About Nancy Thaler
Born: 1949, Kingston, PA
Executive Director, NASDDDS; formerly Director of Quality Improvement, Centers for Medicare and Medicaid Services Disabled and Elderly Health Program Group (2003-2006); past Pennsylvania Deputy Secretary for Mental Retardation (1993-2003)
Community Collaborative, Pennhurst, Self-Advocacy, Everyday Lives, Self-Determination