Visionary Voices
Interview with Nancy Greenstein
April 27, 2012
CHAPTER 1: CHILDHOOD
12:17:24:20-12:18:14:22
Lisa: Nancy, first I’ll introduce the interview by saying welcome, and my name is Lisa Sonneborn, and I’m here today with Nancy Greenstein at Temple University in Philadelphia, Pennsylvania, on
April 27, 2012. And also present is our videographer, Aggie Ibrahimi-Bazaz, and Mrs. Greenstein,
Nancy, do we have your permission to begin the interview?
Nancy: You know, right now, I didn’t hear the question.
Lisa: No problem. Do we have your permission to begin the interview?
Nancy: Of course. Otherwise I wouldn’t be here.
Lisa: Thank you. Nancy, the first question I’d like to ask is when and where you were born.
Nancy: Philadelphia, Pennsylvania.
Lisa: When?
Nancy: June 4, 1929. I’m going to be 83 in a few months.
Lisa: Happy birthday in advance.
Nancy: Thank you.
12:18:14:22-12:19:58:20
Lisa: I wonder, Nancy, if you could share with us some of your earliest childhood memories.
Nancy: Oh, my. Joining the library at a very early age. We didn’t have a car so we walked, you know, and that’s how I spent my summers, really, was going to the library and reading all the fairy tales. I was a very, very good reader of fairy tales, strong believer of fairy tales.
Lisa: Did you have a favorite fairy tale?
Nancy: Everything that ended happily ever after.
Lisa: I wonder if you can tell me a little bit about your mother.
Nancy: My mother? Was a typical homemaker. In those days, when you got married you did not go to work, so -- and I was born on their first anniversary. So she was very, very good homemaker. My parents were very devoted to us. I had a younger brother, three years younger, and it was a pleasure having my parents, and I’m always very thankful is what I had -- very loving, very giving, all the way up until when they were no longer here, and very great supporter of
Robbie and whatever I was deciding to do. So I always was -- considered myself very fortunate that way. Then 15 years later my sister was born, so there’s a gap. My brother was three years younger, my sister is 15 years younger than I am. But still very devoted to each other. We’re best friends.
12:19:58:20-12:20:43:23
Lisa: I wonder, Nancy, if you have a favorite memory of your father?
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Nancy: Oh, my father and I were extremely close. We both loved music, and he took me to my first concert at the Academy of Music when I was five. Jose Iturbi had just come over from Spain because of the Spanish Civil War, and that was my first introduction to classical music, and I’m still at it.
And we went to as many concerts as possible, and growing up I used to have a season ticket to
Robin Hood Dell. And in those days, you could go by yourself. It was fine, and I lived for that in the summertime.
12:20:43:23-12:22:13:10
Lisa: I wonder, Nancy, you described yourself as a great reader, and a believer in fairy tales.
I wonder what you envisioned for yourself as a young girl, for your own future.
Nancy: Seriously, I wanted to be a nurse growing up, and my grandfather was -- I was the oldest grandchild. His granddaughter was not going to be a nurse. He had been a patient in the hospital.
In those days, nursing was not the way it is today. Nurses did a lot of grunge work, and he didn’t see his granddaughter doing things like that. So -- and I listened, and of course met somebody from my graduating class from high school, and she loved it, and my parents said okay, next year you can do it. In the meantime, I heard about medical technology and applied to Hahnemann
[Hospital]. They accepted me -- I had to wait until I was 18 before I could start everything.
Lisa: But at 18 they accepted you before you had even gone to college.
Nancy: I didn’t go to college. They accepted me without college, one of the few that they accepted me without college. So -- however, there was a caveat. Because my religion -- if I didn’t work out, there wouldn’t be another one after me.
12:22:13:10-12:22:13:10
Lisa: And how did that relate to your religion?
Nancy: Oh well, you know how -- it happened before I even graduated high school. When I went for an interview for a typist clerk, and afterwards, my father said, “Well they don’t hire Jews”, which I didn’t know about. But even Bell Telephone at that time didn’t hire African American, didn’t hire Jewish people. So my brother -- I guess I’m going backwards a little bit.
My brother was younger, three years younger, and in those days, it was thought that if somebody was going to go to college, it would be the male because he would be the provider all his life. And since I was close in age, that he should go, and I couldn’t go. But I worked for a year at Blue
Cross as a typist clerk, and got the money together to go to Hahnemann, and there were other
Jewish people after me. S o I’m going back and forth.
Lisa: That’s the way memory works.
CHAPTER TWO: MARRIAGE AND FAMILY
Lisa: We’re going to jump ahead a little bit, Nancy, and I wanted to ask you a little bit about your own family and if you married or had children.
Nancy: I’m married. I married in 1955 and Robbie was born two years later and Joanne was born two years later -- ’55, ’57, and ’59. It’s very easy to remember.
So yes.
12:22:13:10-12:25:28:04
Lisa: Can you tell me a little about your husband?
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Nancy: He was a bit older than I am, and -- but we seemed to fit, and we both had the same crazy sense of humor, and we both enjoyed the same things when we were able to travel.
Robbie, I think, was -- let’s see, ten before we would take a trip, and we -- I’ll never forget the first time we went to Italy and we had gone to Florence straight from the airport, and they took us on a tour, a little bit of a tour, because the luggage had to be taken off the bus and transferred to the rooms. We were in Michelangelo Park and it was about 5pm in the afternoon, and it was just so beautiful. You just stood there and just enjoyed everything, and we had that togetherness that we both loved beauty, and we didn’t have to talk. We just fit together that way.
So whenever we could, we went to London one time on a Thanksgiving weekend, from
Wednesday to Sunday, through Temple Alumni, went to Denmark that way, went to Greece that way. So my parents would come and sit for us. So we did all this, a week at a time. Each year was a week. So thank heavens for my parents.
12:25:28:04-12:27:40:29
Lisa: You mentioned that you have two daughters, Robin and Joanne. I wondered if you could tell me a little bit about them.
Nancy: Well, Robbie is the first born, and I was told that when she was born that she was -- perfectly normal, healthy baby, and the pediatrician at that time was a specialist, a blue baby specialist, and said, oh you Jewish mothers, the way you take care of your children, she’ll grow up to be a very healthy baby. And it wasn’t until about 18 months later that we were at the old
Children’s Hospital, looking for answers as to why she wasn’t developing properly. And he happened to pass us in the hall, and asked why we were there, and we told them, and he said, well he wasn’t surprised, it was obvious. So we had seen him when she was three months old, and he said, oh she’s fine. So that was the beginning of looking for answers.
And she was a good baby, and we did get an answer. In those days you were diagnosed as either a Down syndrome or brain damage. They didn’t know anything about any other syndromes, and we were told she was brain damaged. I still can picture my husband and I walking out of the neurosurgeon’s office just crying, you know. Especially with your first born, you know, everything is -- even though I had a background of medical issues -- I was a medical technician -- and worked the hospital for five years.
But when you become pregnant and have your first child, you are innocent. You are very naïve, and it was just so traumatic and cried for a long time. And then you set about looking for what can you do about it, and that was a long journey.
12:27:40:29-12:29:36:14
Lisa: Nancy, we’ll certainly ask you about that journey today, but I’m curious about something you said. You sa id the pediatrician initially who saw Robin and said, oh you’re a Jewish mother, she’s fine, don’t worry, later on at another meeting, said that her disability was obvious from the start.
Nancy: That something was wrong. Yeah.
Lisa: I wonder how you felt about --
Nancy: You feel betrayed. I said, why didn’t you let us know then? Well, he thought it would be very hurtful. Well it’s hurtful at any time, but at least you can be prepared. It’s when things are not happening, when she’s not sitting at eight and a half months without support, and -- but she looked fine. You know, with a little button nose and a rosebud mouth and curly hair, and just with such a sweet smile, and -- but however she went from sitting to standing -- nothing in between.
She never crept and she never crawled, and that had to be taught later on, so with everything that goes along with as babies learn to creep and learn to crawl, there are other things that are going on developmentally, and we were not aware of that. It’s unbelievable.
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You’re so naïve when these things happen, and you don’t know where to turn, because there’s nobody to turn to. But we had a marvelous pediatrician, the second one, who was Chief of
Pediatrics at Einstein Northern Hospital, and who worried about everything. And wherever we went looking for some help and we heard about things, he would call and raise the questions and find out how qualified they were in trying to help. So I’m most appreciative of that.
12:29:36:14-12:33:54:04
Lisa: Nancy, I’ll certainly ask you more about your daughter, because certainly her disability changed the course of your life. But while we’re talking about your children, I wondered if you could tell me a little bit about your daughter Joanne.
Nancy: Joanne, two years younger, and I used to say I had both ends of the spectrum.
Robbie’s was special needs and Joanne was at the other [end]. I didn’t have an average child -- very, very bright, and that was it. She was quick in everything, understanding everything, and I always felt it was a shame that she didn’t come first. She would have had two years of us unconditionally, without always having to be considered -- though I felt I could divide myself in half. That’s why we didn’t try for a third one, for the boy. It was up to us to have the boy in the family. He had two brothers, and they all had girls, and so it would have been up to us to have the son. And I would have liked to have a boy. But we thought that with two, you could cut yourself in half. With three, somebody would have suffered, and we didn’t want to do that. And she’s a delight, always as a little one, going to dance classes, five, and sending her to -- we believed in affording them all kinds of experiences to see what they enjoyed doing, you know -- ballet and art class and whatever else she was interested in, that kind of thing, to find out where her interests were. Very outgoing, and we lived in a neighborhood that had quite a few children that all went to the same elementary school, all went to the same Hebrew school, and so there was a group there. It was a very close group. So we’re very, very good friends today, very, very good friends, and I have a delight in my granddaughter. So we’ve done the same thing with her.
She went to see the Degas exhibit when she was seven months old, and so we’ve gone to the
[Philadelphia] Art Museum ever since that time, and she has a little bit same weird taste of art that
Joanne has -- Salvador Dali, what’s her name, Frieda -- married to Diego Rivera.
Lisa: Frieda Kahlo.
Nancy: Yeah. And so they bought that, posters, and Arielle wanted the poster of the boot, and they had an argument who was going to have it. So I had a friend of mine who was going the last day of the exhibit. I said, please do me a favor, get me a poster of the boots.
So even when we just went to the Van Gogh exhibit -- what was it, the day after Easter Monday, whatever the date was, we went this time because she was off from school. And so she’s been going quite often, whenever its special. And so i t’s going on. It’s in the genes. It’s been passed on from grandmother, by father, to me, to Joanne, and now to Arielle.
And Robbie loves music, and she does not like cartoons. She needs the human face, and I’ve taped a lot of the VHSes for her, of the Pavarotti concerts. She loves the concerts. The operas, she doesn’t like. The concerts, she loves the classical concerts. So that’s what she listens to.
And I have one last tape now for her -- cassette tape. You can’t find them anymore, and I’m trying to get somebody to get me some of the DVDs for her. She’s an aficionado of Lawrence
Welk, so we watch that every weekend, every Saturday and Sunday, he’s on TV. So -- and she comes in, and she sits down on an ottoman and she has her ear plastered to the TV so she can watch. And she knows. So they do love music.
12:33:54:04-12:38:34:15
Lisa: Sounds like you have a wonderful group of women in your life.
Nancy: Oh yeah, oh yeah, very fortunate, really.
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You have no idea how I feel about that, the support system that I have -- very loving.
Lisa: Nancy, I’m wondering how your family reacted to Robin’s disability once it was discovered.
Nancy: My parents were devastated, but certainly were there supporting us all the way through, and at a certain point, Robbie, we went to the Institute of The Human Potential. She was about ten. We were suggested to that by her neurosurgeon, and they always were there to “pattern”.
Whenever anybody -- you had to have volunteers to help. We were lucky, we did it as a three person team, and if somebody could not make it, especially on the weekend, then they were there, my father always, my father was always there. I don’t know how I would have survived without them.
My husband’s family was not interested -- they were concerned, but didn’t do anything in any physical way or supportive way. You know, they’d say, I’m so sorry, that kind of thing, but never actually did anything for her or for us that way. His parents were dead, and he had siblings, but they weren’t there.
The other extended family, my brother’s wife did not accept her, did not like if Robbie walked near her. In fact, she once said to me that -- oh, Joanne must have been about five, and we were at my parents’ house for religious holiday dinner, and what my brother -- I’m telling you things that perhaps should not be said. Apparently they discussed Joanne on their way home. What people discuss in their privacy, that’s one thing, but my sister in law said to me, told me about it and said, well I only had one child. And I said, “I beg your pardon”? I said, “I have two children,” I said,
“don’t ever forget it”. And that was -- that was extremely hurtful. I never forgot it. I tried to forgive her for it, which I guess I eventually did, but I never forgot it, and I always have a -- that barrier there, you know. We tried to be a family.
There wasn’t that many of us, but that’s a hurt that doesn’t go away, to pretend that -- because she said that Joanne was spoiled. They decided that Joanne was spoiled, and it was because I only have one child. I guess because we had tried to expose her to all kinds of everyday things, going to day camp, you know, for a week or two weeks, that kind of thing. She never wanted to go to overnight camp. And she learned the usual things -- canoeing and swimming and archery and horseback riding, which she loved. She used to go horseback riding in the far northeast,
Taylor’s Riding Academy.
Kids just were very welcoming, you know, for birthday parties and what have you, and that was it.
We always had a group of kids here, at my house, and the children didn’t see anything different.
The neighbors accepted her, you know, which I shouldn’t say accepted, but they realized that there was a situation there, and that was it. Some of them were the ones who helped me pattern her. And several people in particular were always available. If somebody disappointed me, I could call them, and they’d say, “oh well I’m cleaning the oven. Let me take off the gloves, I’ll be right over ”. So I was very fortunate that way.
12:38:34:15-12:43:44:20
Lisa: Nancy, you’ve mentioned patterning a couple of times, and I will ask you a little bit about that in a few minutes, but firstly I wanted to ask you if caring for Robin at home was something that doctors or fami ly encouraged you to do, or was it ever suggested that you shouldn’t care for
Robin at home?
Nancy: Oh yes, oh yes. When she was two, my husband had a practice around Wynnefield [PA], in that area, and I had gone to see a physician friend of his for I think a cold or something like that.
He was not my regular physician but I had a cold or something -- and he said, “Don’t you think you should place her ”?
And I looked at him, and he said, “Well you’re going to have to do it when she’s 17 or 18 or 19, and it’s very traumatic at that time, so you should do it now”.
And in those days, medical personnel always took off Wednesday and part of Saturday And he said, “you
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know, you can’t go out on Wednesday nights or Wednesday, you can’t go on a cruise, you can’t
[go] to the theater, you can’t be spontaneous.” And I didn’t say anything to him.
You know, I didn’t say yes or no or anything.
But on the way home, I said to my husband, I told him about it, and I said, “I can imagine myself on a ship, on a cruise, getting ready for the captain’s dinner, looking in the mirror and saying, well you’re here because you put a two year old in an institution”, which was abhorrent to me.
There’s no way.
This was our baby, this was our child. You don’t place a child. Can you imagine placing a child, two years old, in an institution?
She would have been dead a long time ago. Children can’t live without love, they just die, the soul just dies.
And it was totally unacceptable, unacceptable.
And then again, when she was about 14 and we were in a pilot classroom education at
Longfellow School, and we didn’t seem to be getting anywhere, and the neurosurgeon -- we had to see him every so often -- sent us to a psychologist at City Line Avenue, and they tested her, and they suggested that I place Robbie. And I said I wanted her to go to school and come home at the end of the day like everybody else There was a program already in Boston, Massachusetts, and I had said to them, they have a program in Boston, and the answer came back from the state
-- no, not from the state. Partially I think from the state, [they said] can your husband afford to move to Boston? I said, well you’re the professionals. You should be the ones providing the services that we need, and not tell me that -- move to Boston.
But right after that, a number of months later, when the Right to Education Act came about, we then went into our own school districts, and see, she went into public school in the Northeast
[Philadelphia] -- and the principal there really did not want them either, but he got paid extra. He told this to my husband. So he tolerated them. It was a multiple handicap class.
So, you know, that was the second and last time that anybody ever suggested it to me. But the psychologist herself was trying to convince me to do it. She said because I wouldn’t be so tired, there would be three eight hour shifts, so the aides that would come in there, into the institution, would be fresh and not tired. And so, you know, that kind of thing. And going home, I said to my husband, “Why do I have to defend myself that we want to keep Robbie home? She’s our family, she’s part of the family”. Why do I have to give her away, and trash her is the way I look at it. It may be a little harsh, but at that time, I was very judgmental. I’m a little bit better now, as I’ve gotten older, but I couldn’t imagine anybody placing a child into an institution, no matter what.
But I was fortunate with my husband and my family, my parents, and my sister, who was so wonderful when Joanne was born, the summer that she was born. She was at my house several times a week, helping out, and she was fifteen herself at that time. So that was the end of any thoughts of institutionalization. Except now it scares me, because last year, 12 people from the community went into a state institution. They call them C enters now, but they’re institutions, and that’s unforgivable, and I’m working against that.
12:43:44:20-12:48:09:01
Lisa : Nancy, I wonder if you can tell me a little bit about wh at Robin’s needs were at home, what kind of care did you have to give her?
Nancy : Oh, when she was younger, when she was little? A great deal. Well, let me back up a little bit. Robbie was diagnosed with what caused her retardation about twenty years ago. It was through Einstein’s genetic department, two staff people from PATH sent me brochures on it.
It must have been comparatively new. And I took her over there, and her bloodwork was all negative, but it was skin biopsy that identified her diagnosis, which is Tyshler Pallister-- one more word [Killian] -- Syndrome. And probably happened at the time with conception, when the top of number 12 chromosome broke off and formed an extra chromosome. But the medical package is all the same. They’re always incontinent. It’s comparatively rare. I think she’s probably one of the oldest in the world today, and she was just 55. They’re incontinent. Luckily she’s ambulatory.
There’s hearing impairment, visual impairment, a heart condition -- did I cover everything? She’s never had a seizure, thank heavens. And so the hearing impairment came about over the years.
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She did have -- I had her up to about a dozen words, especially the “B”, the “B” sound, and she loved particular books -- Put Me In The Zoo , those books. When she would see them, she had to say the word book, otherwise I didn’t buy it. And then she would carry it like a treasure to the cashier. So except that she likes to tear the pages out after awhile. But now I can’t find the book now, I wish I could. I’ve had my sister go on the Internet and could not find it anymore. But it was part of the Dr. Seuss collection. It was not done by him, it was done by Robert Lopshire, I think.
But so Robbie did not learn by observation at that time, when she was little. You had to teach her everything. If she came to a door, she did not know how to use the door knob.
Lot of things she did not know, but we taught her how to eat by herself, and I was taught by another mother, who told me how to teach her how to eat by herself. Stand behind her, and then you become one, you know, holding on to her arm or her hand, and teaching her how to scoop, that kind of thing, and how to drink. So we do learn from one another. It was not from a professional. At that time, when Robbie was little, there was no early intervention. There was no preschool, there was no school.
So Robbie didn’t actually go into the school system until she was 15. Always looking for something, you know, of how to teach her, you know. Her hands were large and at that time, even when we started at the Longfellow School Project, they used to have the tiny little peg boards with the tiny little pegs, and it was too small. So one of the fathers made a -- three peg boards with dowels that they could grasp, and painted them, primary colors -- red, yellow, and blue -- the same thing with the dowels, and Robbie got one of them, his daughter had one, and then one was given to Leona Fialkowski - she had two sons who were in the program. And we left them there when we went into our own school districts. But everything had to be taught for her.
And today, she learns by observation. She’s very observant, and she knows where everything is.
We’ve been living in the same house since she was two months old, so she knows where everything is, and I wouldn’t even think of changing her for when I’m no longer there; she’s going to remain there, with supports.
12:48:09:01-12:49:39:23
Lisa: You were talking about the needs that Robin had, the care that you gave her, and it certainly seems clear that those needs were very intense. They were certainly ongoing, and I’m wondering how that affected your own health and well-being.
Nancy: Well of course, the stress over the years is intense, because she lost her speech. She’s sever ely hearing impaired, she has a heart condition, she’s incontinent, which is no fault of hers.
We have her on a schedule, and she does try -- sometimes a little bit too late, but she does try, and she wears Depends but she can’t open them up. So she goes into her room, and she has -- years ago, before Depends came out, she had underpants. She pulls out a pair of underpants, she pulls out the vinyl pants that go over them, and puts on her pajama bottoms. And so she’s dressed, as far as she’s concerned. So she changes into pajamas when she comes home from her program. She’s very comfortable that way. Also, she doesn’t mind coming out without a shirt, either, into the living room. So we always try to tell her, no, no, you have to have a shirt on. But --
12:49:39:23-12:52:21:25
Lisa: But for you, Nancy, what did that do to your own -- your own health, your own well-being?
Nancy: Well I had a history of bleeding ulcers, going back to just before I was married. At that time, they used to think it was stress that caused bleeding ulcers. They know now that it’s a bacteria. So I had to adjust to that. And you learn to become your own physician. You listen to your own body, and you listen to -- everything in moderation. And of course now, the past few yea rs, it’s been going downhill. Started I think when I broke my neck, four years ago, and -- broke my neck, broke the -- fractured the cheekbone in my left cheek, had some fractures in the sinus cavities, and that was an adjustment. And then had my left knee done three years ago.
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Right one was done 17 years ago, and that caused a flare-up of an autoimmune neuromuscular disease, (inaudible), which in the beginning just hit my eyelids. My eyelids shut down, and so I got a diagnosis on that, and that took about two months to get them up properly, and of course
I’m on medication for that. But the flare-up that happened after the deed was done caused me to
-- my neck would not hold my head up, and so there were a lot of other things that were not working, and I had to have aides coming in to take care of Robbie, while I was a little -- sort of incapacitated. And I’ve been getting IVIG infusions. At the beginning, the first week was every day for five days. Then it was every four weeks, three days at a time. After the first year, it’s now every six weeks I go three days at a time. It’s intravenous immunoglobulin infusions that I get, which has saved my life. And so in fact I went through it this past Monday, Tuesday, and
Wednesday, and at the same time, Robbie had to get shots in her knee. She has severe arthritis in both knees. And I coordinated that. How I did that, I don’t know, for this past Wednesday.
CHAPTER THREE: SIBLING RELATIONSHIP
12:52:21:25-12:56:38:18
Nancy, I wanted to ask you, if I could, about what the relationship was between both your daughters.
Nancy: Very, very good. Robbie always looked up to Joanne, and Joanne was very, very protective of Robin, as a sibling. Her friends always came over. The house was always open to her friends, and she just -- that was it.
When she was in high school, and she would get ready in the morning with her hair -- hair was very important at that time -- and Robbie used to stand in the hallway and watch her fuss with her hair, you know, and do her hair and that kind of thing, would stand for the longest time. And she treated Robin as a sibling. She did not treat her as a special child. She could get annoyed with her, you know, as siblings do, but she was very protective of her to the outside.
When she started to date, and she never said anything special about Robin. When they came into the house, and Robbie came in, so she always said, this is my sister. If they looked askanced at her, she never saw them again. She would not be bothered with anybody who did not accept -- you know, so this is how she was with Robin.
She used to baby-sit for us, and all she required from us is don’t just assume, just ask if I’m available to baby-sit, which of course is right. It’s not to be assumption, it’s not her responsibility.
We just carried on. I’ve always felt that as she became an adult that it was not her responsibility to have Robbie, to take care of her when we’re no longer here.
And I would assume that if and when she married, that the spouse might not be as accepting, because your whole life revolves about Robin, and you have to make your adjustments, and if you’re not willing to do it, it can be an imposition. You’re not free to be spontaneous.
Although we did -- you know, we always took car trips, when my mother became a widow.
We always included her going to New Hope a lot, to going down the shore for the day, when they would have art exhibits on the boardwalk, we went down for the day. Even when we were patterning Robin, we would go down for a weekend after Labor Day, take down old sneaks, you know, then walk along that way. But relationship has always been that way. Now Joanne today can get a little impatient, because Robbie likes things a little bit louder, you know, because of her hearing impairment, which was gradual. We didn’t realize she was losing her hearing for quite some time, we just thought it was just Robin with mental retardation. But not until I realized that
Robbie’s not spiteful, and that she would not turn around to -- if I called to her, we realized this was something we had to look into. But the relationship is very loving, and it’s carried on to my
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granddaughter, who is very protective of Robin, and Robbie doesn’t have much choice in her life.
It has to be with her tops. She wears denims all the time, trousers, because of being incontinent.
So I always give her a choice of shirts to put on in the morning, and she would decide that she didn’t want this one, she didn’t want that one, and Arielle at two and a half would come in, “Come on, Robin,” you know, “do you like this one? It’s so pretty.” That kind of thing, trying to convince her on what she likes, but always very protective of her also. And as I said, Joanne has always been that way, and if I need help, she would try to come up. Well, until Arielle started school.
Then it became a little bit more difficult. But she comes up and spends quite some time, you know, so -- but it was always good growing up. As I said, her friends were always welcome, and they accepted Robbie, too, and -- which was good. We all learned that way.
CHAPTER FOUR: FINDING SUPPORTS FOR ROBIN
12:56:38:18-13:04:21:15
Lisa: So Nancy, when Robin was younger, as you had said earlier, there was no education available to her. The public schools were not available to children with disabilities. So I wonder if you can tell me a little bit about what was available.
Nancy: Well, we had been told about Dr. John Bartrum at St. Christopher’s, and they wanted to check her hearing, and we had an appointment for 9am in the morning, and it was the day after a very big snowstorm. And she was possibly around three, and we had to park.The parking was on the street parking, and we parked near a snowdrift. We went in at 9am and they said that the machinery was broken. I said, “Was it broken at 5pm yesterday”? Yes, it was. I said, “Why didn’t you cancel, knowing there was going to be a snowstorm ”? Well, you know, was just -- there was no concern. And Fisher Price used to put out a little radio. Well, you turned a knob and it played nursery rhymes. I brought it with her. It was one of her favorite toys. So I said, “Well she hears this ”. So then the doctors and the audiologists sat at one end of a long room and started to turn the knob. She was with us, and she heard, and she ran to get it. So they said, well, she has enough hearing. That was the end of her hearing test.
They had a program there for three year olds, and Robbie fit the criteria except that she was ambulatory; they would not take her. Even though she fit every other criteria about her inability to do so much, didn’t have much ability for much of anything, would not take her because she was ambulatory. So we had to start looking for where else could we go.
And of course at that time they had Philadelphia Association for Retarded Children, and they also had -- we heard of a program from the Lutheran Church. It was called Kensington Dispensary at that time, it was at Front and Susquehanna. And my pediatrician at that time, Dr. Dickstein, called them both and spoke to the administrators, and said, “You’ll take her to Kensington Dispensary”.
It was run by Sister Grace, and Sister Catherine was her aide there. It was for half a day. It was basically babysitting. They didn’t know much about what to do. We tried to offer some sort of something. You know, they played the piano, they sang songs and maybe some games, that kind of thing. So she went there for several years, until she was -- from four to seven she went there, and then I start looking, you know, because that was the age group, looking for something else that would give her more training, and that took awhile.
And so we were told -- suggested that we go to the Institute for the Human Potential, Stenton
Avenue in Chestnut Hill. They called it the “patterning” program, which we looked into, and they said they could take her, and it was expensive. And you went every six weeks for an evaluation, to see if you progressed. And the onus was on the parents, especially the mother, who was always the one taking care and providing the program. And if the child did not progress every six weeks, you were held -- you were chastised. Oh yeah.
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And volunteers -- the program consisted of volunteers going through -- it was almost like a swimming program. I always did the head, and then a volunteer would move the arm and a leg on one side, in one motion, and the person on the other side would be the opposite motion.
So you were creating almost like a creeping, crawling kind of thing. That was supposed to stimulate the brain into learning, and I used to sing the nursery rhymes, because the adults that came didn’t always have terrific coordination, either. So it was to keep everybody moving at the same time, and so we did that.
Academically it was an excellent program. We were given a set of words for her to -- that’s when they started that. You would put the words up, say the word “sofa” on the back of the sofa, the word “TV” was on the TV, the word “refrigerator” was on the refrigerator -- you had signs all over the house, and that’s how she learned to read. And she could recognize over 200 words by the time we finished. She would point, and we would do small sentences, and I would test her on it.
First we tested her on two words at a time. That’s when she could hear, and then I would give her maybe a three or four word sentence, and ask her, you know, where is the word for this, where is the word for “daddy”, where is the word for “is home,” that kind of thing, and she did it.
And at that time, she was learning some language, and we had other things that she learned -- sensory perception -- at that time.
She used to pick up things with her hold hand, and we would take turns. My husband would come up, say from the office -- we had our office with our home -- and while I was preparing dinner he would teach her how to pick up a penny, or pens, or like bobby pins, things like that, with her thumb and her index finger, the pinching movement. She learned how to string beads. We realized everything took six weeks for her to learn.
I would take her down to its simplest component, and each thing we had to teach her each step of the way. So it would take like six weeks to learn to do a whole string of beads. It was very good that way. And thinking of all the different things that we did, it was a full program. We had to teach her how to creep and crawl through a box. We had to make a box, and with certain dimensions.
Also she had some visual problems so we had to get a -- I’m trying to think back. I can’t remember the thing we did for her eyes, to -- she has Keraticonus with her eyes, which can lead to blindness. She also has strabismus, which is muscle weakness in one eye. So to get the eyes together, we had to do certain eye exercises with her.
It was a full day program, and the patterning was done four times a day, seven days a week, no matter what. I also was fortunate enough to get some teenagers from Northeast High School, put an ad in the newsletter there, and got some kids to come over, and they were absolutely terrific.
They came through in all kinds of weather. They helped to build the box and they were just devoted to her. And it was something new for them, too.
So at that time is when JFK was president and this was where everybody wanted to be active socially, to be active helping people who were less fortunate, and it was about five or seven of them who spent a few years with us.
13:04:21:16 - 13:10:40:04
Lisa: Nancy, I’m curious. A program like that, was that made available free of charge to families?
Nancy: No, no, no. At that time, I think the initial was about $500 and every time you went it was
$150, every six weeks it was $150. There were people who came from out of state who did get some compensation, traveling time, that kind of thing. In Pennsylvania, got nothing. This was out of pocket, and this went on for five years.
And to have got to a point where she wasn’t making that much progress, and they wanted us to do some things that I questioned, and didn’t feel was in her best interest, and I spoke to
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physicians about it. They wanted me to get a gag reflex out of her, putting a tongue depressor in her mouth, doing this 12 times a day, seven days a week, and I said -- they thought it would strengthen the muscles in her mouth for speech.
I s poke to her primary doctor and he said, no, no, no, no, you’ll undo all the good you’ve done.
They wanted me to take her into a closet and put on a red light every so often, and I thought, this is not going to help her eyes. I spoke to the ophthalmologist. He said you can cause a seizure in a child who’s never had a seizure. So I thought, well if I’m cutting out two big parts of their program, and it’s costing me this kind of money, it doesn’t pay. So I stopped.
But during that time, one summer I saw an ad in the local newspaper, the Northeast Times, little, little piece, said do you have a child with -- well, disability, and not able to do a lot of things like eating by themselves, and walking, and what have you -- didn’t make any difference. They wanted to try a summer program, at the Longfellow School in Bridesburg. So I thought, well, I’ll call and find out what it is. It was a music teacher. It was a parent, Leona Fiokowski, who I have blessed all my life. They had ten children, two of them were handicapped, and who had been trying for 15 years to get some services for her children. She was able to convince school system, former Mayor Dilworth, and Reverend Henry Nichols, minister, who were with the school board, to give us a chance. So we met in the basement of this school in Bridesburg, with very little equipment. But they listened, and we were able to continue as a program in -- during the regular school year. Still went for half a day.
The principal of the school was so supportive of us, and then we started having teachers. At that time, the special ed teachers didn’t work with children at this level. They called it the multiple handicap class, and the only criteria was that an adult had to come with the child to help. You usually work with your own child, and we were taught also how to work with them, how to speak to them, how to give your directions. Also learn not to speak, have conversation over their heads while you’re trying to teach them to do whatever the skills that you were trying to impart to them.
And learn to teach by myself, and did some teaching, you know, at that point. Learn to assess a program, so that if I came into another group I could see right away.
People came from all over the state to see what we were doing. There were even some people who came from Ireland, who helped -- for whatever reason, they were in the United States, they came to see what we were doing, because of working with children at that level, they were not accepted in the school system, because they were not -- at that time you either had trainable or educable, and these children did not fit the criteria.
But we also learned that -- well I felt this way, and I think the others felt the same way -- all these children were our children, they were my children, too. They still are, and when a child needed a hug, it had nothing to do with religion or race, it had to do with the child who needed a hug. In fact, our class also worked with some so-called normal children, who might have had some difficulty in school with behavior.
We had one little boy who came in, and all the other children, by the way, in this school were bused in. And he came in and he learned that he was more capable than children in his class who were older than he was. He must have been about nine or ten. It’s a bit of a discipline program. And he became a teacher, an aide, in the class.
His behavior changed dramatically. He was the one who was in charge, he was the one who taught, he was the one who was capable, and so at the end of -- in June, we had a party for him, a thank you party, but when he went out into the hallway, he went back to his struttling a little bit, but his behavior was still changed. He straightened out.
So we all did well by this, and by that time -- but I had gotten permission from the patterning program to attend this program. So I did patterning, and did all the programs there, and then still took her there because she formed friendships, you know. It was a structured program, and until
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the Right to Education Act came about, we then went into our own school districts, when she was fifteen.
CHAPTER FIVE: ACCESS TO SCHOOL
13:10:40:04 - 13:13:35:06
Lisa: What was it like to go to the public schools for the first time?
Nancy: Well, as I said, the principal was not in favor of us, but he accepted us because it is more money in his pocket. We had an excellent teacher who was trained, Howard Jennings, who was marvelous with the kids. In fact, for the first month, I was an aide who went in there, until they got an aide to come in on a permanent basis. He was always soft-spoken, he was very kind, he knew what he was doing.
The children all had different abilities, physical disabilities, were incontinent in several ways. He thought nothing of changing a dirty diaper, and was always very gentle. I know of one case where he got this young man to walk with a walker, who had been crawling all the time.
So he went on, sad to say, to become -- what is it now, the next level -- supervisor, because he’d done so well. But then he couldn’t -- when you’re a supervisor, you have to do what you’re told.
Couldn’t make any waves. So he finally left and went to Connecticut with his crew. So I heard he was then on a state level.
But he was -- I’ll never forget -- one summer, he had a summer program in Mount Airy, where
Temple has a football field, athletic field. It was a summer camp, and Robbie went there, and when it was in bad weather, then there was a church close by, I think about a half a block away, and they had the basement there where they had a piano and his wife helped out with that.
So that was a wonderful experience. That’s what I’m saying is that I was very fortunate, some of the people that I met, really grew myself. And each time, there was -- it was just a wonderful experience.
And with Leona Fiokowski, I learned to advocate. It was like good cop/bad cop. I was supposed to be the good one, you know. She was the more aggressive person. She had been fighting all these years, and I hadn’t been doing that. I had been looking for services, but I hadn’t gone to see legislators or personnel or anything like that. So I learned from her how to speak out. When it comes to yourself, you may not speak out; when it comes to your child, you will do just about anything, and you will go visit anybody, to try to get services for them. So that’s where I learned how to advocate.
CHAPTER SIX: PARENT NETWORK
13:13:35:06 - 13:16:32:03
Lisa: Nancy, I wonder, so many of the parents we talked to mentioned Leona Fiokowski as being a mentor and an influence. I wonder if you could describe her a little for us.
Nancy: She was - - had the biggest heart that you could ever want to know. Her husband was so supportive of her. It was a lovely relationship, and she cared so deeply, and she fought so hard, and at one point, she was at some position with the state having to do with the closure of
Pennhurst. And I remember going to the hearing in Judge Broderick’s court, and she was there, and I was there too. And what a success.
But she, as far as I was concerned, single-handedly got us into the school system, with the support, of course, former Mayor Dilworth and Reverend Henry Nichols. But she even went to the
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dental society, asking them what kind of dental services were available for our kids, and spoke to my husband about the lack of training in that -- there was no training in the dental schools to handle children at that level.
And so she went fighting on her own that way, and she was such an inspiration to so many people who -- and she brought so many people together, and people did listen to her. They did listen to her, and then there was a -- an awards system when she passed away, and I was honored to receive one of the awards, the Leona Fiokowski Award, which is in my living room, and I met some of her children, and in fact, I can’t think of the youngest one. You know her.
Lisa: Kate?
Nancy: Kate, yeah. She was five when we started this business, and then there was another one,
Barbara, who lived out of state, who was always very concerne d about the two boys, and she’ll never be forgotten. And as I said, her husband, they always called each other mother and father, instead of their Christian names, but they were so together on what they were doing, and so supportive of one another. It was just wonderful to see, and she was determined that her children and every other child was going to get the services that they deserved. And as I said, she was my mentor, and I will never forget her. Because everything that I am today came from her, from her image, from her leadership, and so many were that way.
13:16:32:03 - 13:21:12:11
Lisa: Thank you, Nancy, for sharing that. I’m wondering if there were other parents that you felt a particular connection to. I wonder if there were other parents of children with disabilities that you felt a particular connection to during this time.
Nancy: Oh, there was the -- of course Mureen Devaney and Dee Coccia, part of the advocacy group that we started, simply because of -- well, let me back up a little bit.
When Robbie was eighteen, I realized that she’s going to need something after twenty-one, and I start looking around, and again, I saw a little blurb in the Northeast Times: would you like to be on an MHMR board? I had no idea what it was, and so I called, and they told me when there was a meeting, you know, and I went and I saw somebody there that I knew from before, from the park aides, and I thought, well, it’s not subversive, and that’s how I got into the system.
And I got on the board of PATH which is in the Northeast, middle of the Northeast. It’s a mental health and retardation agency. And Maureen Devaney was on the -- chairperson of the family group at PATH, which was not on the board. The thing that they’re -- different families met there to discuss what they need, and one time, she called me and said, “Nancy, please come to a meeting. It looks like the state and the county want to eliminate sheltered workshops ”.
And so I went down, and our workshop director went down from PATH, and some other board people, and there was an attorney there who was talking about the closure of workshops. They didn’t see the value of it. And that’s when I also heard a voice in the back of me, also who knew
Leona Fiokowski. Her name was Mary Curcio. She was on the board of PEP -- Programs for
Exceptional People -- and she was one of these people, like Leona, in South Philadelphia, who got other parents together, and they formed a group to start this training for children like that.
And we became friends, we got others together, and we started the Philadelphia Council of
Concerned Families, which was an advocacy group. We got no money, the coalition, which is made up of the large number of comprehensive MH/MR retardation agencies in the city who gave us space, and a time when they could give it to us. My own agency provided the mailing for the meetings, and we had people coming from all over the city. Mostly moms, because it was in the morning, and then we decided on what we wanted to do, and we had people coming from the county, from the state, to meet with us, for us to have an opportunity to express our concerns, what we felt there was a lack of, for them to listen to us and try to respond appropriately, and
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that’s how we learned, that’s the way we took this information back to our own parts of the city.
And that’s how we kept informed.
We didn’t encourage a large group trying to get more membership, because if it gets too large, then not everybody could be heard, and that was important for everybody, to be able to express their concerns and explain their own personal issues and their own personal history. But along the way, I was honored by COHMAR several years ago for the Dot Anderson Award, and that’s when I expressed then all the people that I met coming up, because nobody does anything by themselves. Whatever you’ve accomplished and you’ve been recognized for, it’s because of everybody that you met along the way, and the people from the county, Kathy Sykes, Mike
Covone , Estelle Richman, who I don’t think anybody has to -- doesn’t understand where Estelle came from and where she’s gone -- was a very, very big advocate and came often when we had questions, and we expressed some of our concerns and we pointed out some irregularities, and they listened to us. So we did make a difference.
13:21:16:17 - 13:23:59:26
Lisa: Nancy, you talked about being mentored by wonderful people like Leona and other friends and peers like Maureen Devaney and Mary Curcio, my apologies.
Nancy: Mary Curcio is just -- we were almost like twins. She lived in South Philadelphia, I lived in
Northeast Philadelphia. We had the same anniversary date, believe it or not. We had gotten to a point where it was almost like a marriage, where if you say something, your husband can pick up right away, and this was it. She would start something and I knew exactly what she would say, would finish it, would finish the thought. We were on the same plane, and she passed away last year. It was such a loss. We were so accustomed to speaking to each other several times a week, and we were both on several committees. Of course, she was so supportive.
If I wasn’t able to be at the Philadelphia Council for Concerned Families, she could take over, and she was so active down there, and people looked up to her. She was -- I think in a way she was a little bit nicer than I am. Because I said at times I could be judgmental; she was never judgmental.
And I learned a lot from her that way. I tried to not be, you know, impose my views on what I thought about other peopl e, that whatever they did or they didn’t do. She always found reasons for whatever they did or didn’t do, and so I was able to step back a little bit, quite a bit, and don’t be in such a rush to judgment.
So for everybody that you meet, you always gain something from them, and the support that you get from them, which is -- you just can’t even think of all the people that have been there for you, and supported you, and that you learn from, and I’ve said this quite frequently is that if it hadn’t been for R obbie’s disability, and that she was personally involved with it, you know, and it breaks my heart, because of you worry about the future, about the isolation, since she doesn’t have any speech, she’s hearing impaired, of not being able to interact with other people like herself. But she’s learning, and -- I’m losing my train of thought.
13:23:59:26 - 13:29:14:27
Lisa: That’s okay. You were talking about what the relationships with other mentors --
Nancy: Yeah, that if it hadn’t been for Robbie’s disability I would never have met the people that I met, the people that I mention, but also the people from the county, and the people from the state level, and legislators who listen to you, especially their administrative assistants, who were the ones to get to, and who understood.
I went to see one, one time, and his mother had problems, and so even though she was elderly and he was looking for services for her, the proper nursing home and the unavailability of maybe the appropriate nursing home. And so he fully understood where we were coming from, of looking for the proper services, or opening up residential programs, that kind of thing.
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And so you found so many people who were willing to help, and who would listen to you.
And we would go visit -- or I would go visit some of the legislators, not asking for anything in particular at that particular time, not asking for a particular piece of legislation; just to meet them and tell them about our agency and who we represent and what we do, and about myself. And so to have some sort of rapport with them, and that you were not just a number, and we had some meetings with former state senator, who met with some families who were looking for services. They were aging out of some of these services when they were eighteen, had no place else to go, and of course I was chastised after that by the administrative assistant. He said, you know, brought tears to our eyes. I said that’s what I wanted him to remember.
They’re not numbers anymore, so when he hears about legislation that comes up, to support or to enlarge programs, or services, that he’ll see the faces and not just think of them as numbers.
In fact, not long ago, there was a little piece in the paper about some legislators and some people from the governor’s office went to see -- they called the [institution] -- they called it a little gem. I don’t know how you can call an institution a little gem, and that was very upsetting to me.
And I’m also concerned about- the fact is that- as we are concerned now, with the budgets coming up and with the cuts that have been set forth, that we’re going to -- the state is going to destroy all the advantages and -- that we have built into the system, for the past 55 years, for my life, for Robin’s life, are going to be demolished, and that people coming into the system will have no system at all, and not have any services.
There would not be sufficient money, so that providers may have to cut services, have to cut staff, and all you’re doing is enlarging the unemployment system and hurting the very vulnerable people that they promised to help. And -- which we’re trying to counteract. In fact, there’s supposed to be a rally next week in Harrisburg, which we have given some financial support for a family who can go up and stay overnight. I can’t go to Harrisburg anymore. Those days are gone for me, but we can certainly support those people who are able to do it. And this is a grave, grave worriment that I have.
And it’s not Joanne’s responsibility to take care of Robin when I’m no longer here. I’ve tried to set forth things done in her ISP, that Robbie is to remain in her home that she’s known since she’s been two months old, with the support from my agency, and I don’t care if they make it into a CLA.
And of course she can remain and be happy that way, and other people have listened and they’re trying to do the same thing. You can’t will your home to the agency, because you never know what the budget’s going to be, but there is -- in the ISP, it’s like a legal document, so you can say this is what I want, this is how I want it to be done.
Of course I’m a little prejudiced. I feel my agency’s the best, so I only want them to monitor it and to take care of it that way. And they’re very good that way. We’re a family at this agency, it’s a family. We relish longevity in our staff, so we have staff who have been with us for 34 and 35 years.
CHAPTER SEVEN: INVOLVEMENT WITH PATH (People Acting to Help)
13:29:14:27 - 13:32:14:00
Lisa : Nancy, you mention your agency, and so this seems like a good segueway to talk a little bit about your involvement with PATH over the years.
Nancy : Yeah.
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Lisa : It is important to you. I know that you started out, as you had said, when Robin was eighteen, looking for supports and services. In I think 1977, you became a member of the PATH board?
Nancy : Yes, that’s when I decided I wasn’t subversive, and I learned -- I got on the board and learned about the system, and had to keep my -- kept my mouth shut and listened. It was a different system at that time, completely different system.
And even from the county level, it was the county administrator who thought that it was his responsibility to send money back instead of using it as best he could to provide services.
He thought it was his responsibility to send money back to the state, to save money that way, which boggles the mind. But over the years it has changed, and the people there are excellent, and cared very deeply about what they’re doing, and there’s always been a good rapport with providers.
Our board is made up of community people. Some of them are family members for behavior health. Some there are family members with children with intellectual disability. Some of them are there because they care, and so it has changed over the years. In fact, right now, the board that we have is the best one I’ve ever been involved with. I’ve been re-elected -- I’ve been chairperson of the board for about 27 or 28 years, I forget how many. Nobody seems to want to take over, you know, so they still support me in a more limited capacity than I can do at this time.
But -- and most boards, we’ve always encouraged boards, for families to get on the board of directors of an agency, because they give a different viewpoint, because they’re recipients of the services that are supposed to be provided, and they can give invaluable information about the impact of the services or the lack of services, or the people who are providing the services.
And from our own agency, we’ve always expected board people to be part of two committees.
One is a program committee, and one is being on the administrative committee. So you know where the money’s coming from, how the money’s being spent. So it’s one thing to be on a program committee where you are asking for all kinds of services, but it’s another thing to understand where the money’s coming from, how it’s being spent, and making the most of it that you follow your mission, and I’m very proud of that.
13:32:14:00 - 13:35:56:26
Lisa : Nancy, did this seem like a big shift for you, to suddenly be part of an organization, and to feel heard, as opposed to when Robin was very young and --
Nancy : Yes. First of all, you’re learning. You’re learning about the whole system, of providers, services from the county level, services from the state level, services from the federal level, and the changes that families have brought the closure, is because families demanding the closure of institutions, like Pennhurst and Embreeville. And not because there was the professionals only who thought that this was the right thing to do; because the institutionalization costs a lot more than living in the community.
And living in the community, as I said -- you know, people now, you walk through a mall and you see families with a child with a disability. Could be physical, could be intellectual disability.
It could be both of them together, and they walk and don’t have to worry about stares or being unusual, you know, being looked up on as somebody to be a little afraid of, and it’s a common thing. You even see it in some advertisements from Wal-Mart does that, and some other organizations do that.
And our own agency has done a video, and I’m sure others have done -- I think Temple has done that also, and with some agencies, some providers, about employment for people with disabilities.
We’ve done that, so that we can -- we’ve shown it to the Northeast Chamber of Commerce, we’ve shown it to parents to show what their children can do, their adult children can do with training.
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We’ve shown it to different venues as possible, and very proud of it, showing how happy they are and what they’re doing, and that the employers are also happy. There are some employers who are very interested in doing this, and we have job coaches who go out, work with the individual to learn their job, and support them, and so -- and they’re supported by their co-employees, you know, their peers, and for many people it does work very, very well.
And the thing is that now, I mean, we always took Robbie to the Rodin museum but not to the regular Museum of Art, because you have to be very quiet in there. But going to malls, going to parks, things like that. It’s normal to see now people with all kinds of disabilities, and so you’re very proud of that, and we don’t want to see it go back, where they’re shunned and don’t have a place, and they’re accepted, which is -- one time I was in a mall with Robin, and somebody came over to her and asked if she could help them. And I said, “no she doesn’t work here, she’s with me ”.
So I was very proud of that, you know, that she didn’t look any different. I see that she’s not dressed any differently, that she should blend in and look like everybody else. And this is what we do, and the parents now are our force. They want things today. Th ey’re not willing to wait maybe as long as we did, but they are a force to be reckoned with, and they should be. They’re part of the system and they work well with the county and with the state as much as they can.
And that’s it.
CHAPTER EIGHT: TRANSITION FROM PENNHURST AND COMMUNITY COLLABORATIVE
13:36:00:27 - 13:45:05:21
Lisa: So Nancy, I wanted to ask you very quickly about a case that you probably can’t really speak quickly about, which is Pennhurst. And of course with the closure of Pennhurst, people who had been institutionalized were being now transitioned into the community. I know that there were some; parents who kept their children at home, who were put on waiting lists for supports and services. I wonder if there was any tension between --
Nancy: There was, there was a little resentment, because the intent was to get as many people out as possible, as quickly as possible, and so there was a large, important thing about providing the monies, and so there wasn’t enough for both populations -- those who had been kept at home waiting for services, who maybe had gone to school and then after school there was nothing available, no place to go, because there was limitation as far as the workshop was concerned, or day program, or where they would come to.
And even as far as residential services, because there were communities that did not want them in their backyard. They did not want them out on their street, or we had an issue where some people from a few streets where we were talking about opening up a residential duplex ourselves, and they didn’t like when some of the consumers or the people coming out, their physical appearance. Maybe their faces were a little deformed or they were in wheelchairs -- they didn’t like to see that, so they wanted to make changes, as if we would do something like that, you know, maybe exchange them for nicer looking people, which was abhorrent.
There was a group in Tacony that was supported by a political person who had his own agenda.
He provided them with legal services. We were trying to open up a group home, and they fought it.
They picketed us. There were several fires, and the FBI finally came into it. We had to decide whether we would keep it open or not for the safety of our consumers, and also for the staff had to come in, because staff also were not Caucasian. Most of the staff were not, and so we had to decide what we would do.
On our board we had a husband and wife who had been through the Holocaust, and so they knew about intimidation. They had a son who was intellectually disabled, and we talked about these things, and we decided that if we gave in and closed it down, they would have fires all over
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the city, for any residential program that would be opened up. And we provided them [staff] with cab service from the L-line to the home, back and forth, you know, for when one group would leave, you know, say 11:00 or whatever the time was, then the other group would go back to the
L, because most people didn’t have their own cars. And it worked out. In fact, one of the neighbors started to date one of the policemen who was guarding the place, and another neighbor, because our people became good neighbors, they would do some shoveling, they would do some going to supermarkets for them.
I was even honored at the Mayor’s reception several years ago for her work, changing around her feelings about our people, living in the neighborhood. But getting back to the actual Pennhurst there, there was resentment, because it meant that people who had kept their children at home for all these years, fighting for services, looking for help, were then left at home without any support. There wasn’t any parity. But it worked out. They understood, and finally some monies were available and we tried to see that everybody was served. Everybody understood about waiting lists.
The sad part is that when people came out of Pennhurst or Embreeville, the medical records did not follow with them. Providers were left completely at sea as to what their background was, what their illnesses were, what their allergies were, and had to start all over again. We had a large group of people coming out of Pennhurst at our agency, and now they’ve aged out, and they’re enjoying their senior lives.
But because they came out, they were in their 30s and 40s and 50s, and people who should never have been institutionalized to begin with, high-functioning, and we had a very good, successful group [home] with two men who had a home, who lived in a two-story house on Castor
Avenue, and ended up getting jobs, employment, and ended up as just staff coming in periodically to see if they need any help, and now they’re on their own, they’re no longer one of our people. So they are now independent in the community, working. So it is successful. So I don’t think there is any resentfulness now.
Everybody’s working for one thing, for everybody to get off waiting lists for services, and not have to wait for somebody to die to get into a residential service. Of course they’re really not opening too many of them now. They have other means of either sharing a home or families who are willing to take in somebody with special needs, where they become part of the family and they are paid to do this, and sometimes they get services -- more services than the biological families did, and that’s sometimes creates a schism in there, and I don’t blame them. I would feel the same way. If you couldn’t get any services for your child, but if they went to live with another family, then the family would get services, vacation time, somebody to take them for medical appointments, not the family, you know, that kind of thing. So that creates sometimes -- and rightly so -- a resentment. It seems to be like a twoparty system, and that’s unforgivable.
But again, we still hope to close the institutions because they should not be there, and even people who have had a history of being very, very difficult, with the right staff, the right trained staff -- of course, for those kind of people you might have -- somebody has a master’s degree working, so of course the costs are more, then somebody just needs to be taught how to do laundry in their home, to be taught how to do shopping, to be taught how to do some cooking if possible, you know, be part of the family unit. People who have other issues besides intellectual disability need support that way, and they’ve gotten it. If you’re willing to pay, you’ll get the staff who are very, very caring and who will turn things around.
So it is successful, but unfortunately in today’s world, not just people with disabilities, but seniors, poor people, are getting shafted, and they’re not valuable enough. And so rather than raise taxes, which doesn’t have to be, and I’m getting political now, is that businesses are getting a 25 percent tax cut, and services are getting a twenty percent cut, and sometimes more on top of the providers -- six percent plus another twenty percent, and counties are now told to -- to decide who’s going to get what, which is not fair. So people with disabilities, people with mental health,
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people with drug and alcohol problems, people with homelessness, are all fighting for the same dollar, and the county has to decide who’s going to get some of what. And that’s totally unfair.
There is money available, and just have to be willing to spend it.
13:45:05:21 - 13:50:55:11
Lisa: Nancy, you had referenced some of the problems transitioning from institutions into the community, and of course most people who know the system know that the attorneys representing the Pennhurst plaintiffs were unhappy with the way the transition from institutions to community was going. They were unhappy with the timeliness of the transition, and had threatened the city of Philadelphia with more court action. In response to that, in an effort to avoid litigation, people like Nancy Thaler, Estelle Richman, among ot hers, initiated Philadelphia’s
Community Collaborative, of which you are a part. So I’m wondering if you can tell me a little bit about what your role in the collaborative was.
Nancy: Well, it was a limited group of people. There were professionals and there were state people. There were some providers there, parents. I think we were only 50-some people, all told, and to get an input from the whole group, as to what was needed on behalf of people with special needs, and talked about relationship, talk about education, talk about living conditions, giving them choices. Because all along, families many times did not have choices, or the individuals themselves had no choices to where -- what they could do, how they could live, where they should live.
Now it’s different. You are -- if you’re talking just not with people within intellectual disability, talking about people with mental health issues. There’s a Renaissance Program which includes the individual with their staff, and they talk with each other, people who are willing to do this, what are your goals? What is it that you want out of life? And they are articulate. And so now it’s no longer where the professional is telling you what you should be doing, how you should be doing, why you should be doing it. It’s now a partnership, and now they listen. So that the individual is now deciding what their future would be like, which may be different what the professional may see it. So the professional is not one telling you how to do something or why to do something, they’re now sharing with you what is it that you want to do, and how do we go about doing it?
What are the steps that you have to do to do this, and maybe some of your dreams are a little bit too much for you to do, but it could be something in the same line.
We had somebody one time who wanted to be a pilot, and -- oh no, one wanted to join the
Foreign Legion. And we said, okay, what do you have to do, to join the Foreign Legion? First of all you have to know French. Second of all, you have to be able to get over there, and show why you want to be part of the foreign legion, and what does the foreign legion do? When you realize some of the barriers that he had overcome, he decided, well that was not appropriate, but he got a job at the airport doing some sort of maintenance. That was close to an airplane, that was close to someone wanted to do something different, and so he changed his focus.
There was somebody who -- I don’t know who the consumers are, none of us do that -- but somebody wanted to join a synagogue in the Northeast, and she decided -- they said okay, well how are you going to make a choice? Well she had certain criteria, and she had a plan. It was written out. It had to be close to transportation, it had to be not just all old people, but some younger people, middle aged people, seniors also. It had to be something that she could afford.
She went and interviewed the rabbis for several congregations, and she had her criteria out there in front of her. She checked off, decided where she wanted to go, but it was her plan, and it worked out well for her. As it turns out I believe she belongs to my synagogue, but I have no idea who it is, you know. But it’s giving people choices now. Even with intellectual disability, it’s giving them choices as to what do they like to do.
We had one of our consumers who wanted to work in a laundry, and that’s what he does now.
He enjoys it so much. If you see the video, he is so happy doing it, and the owner of the laundry
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is so happy to have him, he has given him more responsibilities. He loves doing laundry, and folding everything, and he’s so precise about it, and he’s so joyful in this.
So people are given choices as to how they want to spend their lives productively, and this is where both Pennhurst people -- I hate to say Pennhurst or Embreeville -- but people coming out of institutions are -- do you want to come out into the community, do you want to live in the community, do you want to be part of a young people’s group, do you want to go to concerts, do you want to go to sports events, things like that. And they do, and it’s giving them a choice. And so any more, there’s the division between institution and community is being blended.
The resentment that occurred at that time was difficult, but they got over it, and people understood.
13:50:58:29 - 13:54:06:10
Lisa: And I want to set you up by asking what your role in the collaborative was, maybe even starting with who invited you to participate.
Nancy: About the what?
Lisa: The community collaborative -- I’m wondering what your role was in that and who invited you to participate in the collaborative.
Nancy: Ah, trying to think. Somebody from the county decided to ask me to be part of it. Leona was part of it, Leona Fiokowski was part of it. Maybe she had part of it, I don’t know. But I knew quite a few people who were part of it, and who decided, I have no idea, but I was invited to be part of it and I knew quite a few of the people, from the state level. And some of the advocates and some of the legal people that were involved -- Eileen Shane, who’s the other one?
Lisa: Judy Gran? Judy Gran?
Nancy: Judy Gran, yeah. And it was interesting.
Lisa: Tell me what was interesting about it.
Nancy: It was interesting in getting different viewpoints, everybody trying to feel each other out.
It also was limited time as to how much you could spend at each different little session.
You know, you couldn’t spend time in all the sessions, and then they gave you a certain amount of time where two people get together and try to ask questions about the other person, you know, that kind of thing, and you were given maybe eight, ten minutes, that kind of thing.
And then they went around the room asking, well what did you learn about the other person, and unfortunately I was answering so many questions that I didn’t ask enough questions for my partner, as to that way. So I think I fell down that way.
But it was a truly learning experience for everybody to actually come to grips with what people with a disability felt, their feelings, what they wanted out of life, and for the professionals, whether it was a family, members that I was, or some of the county people or the state people. We were on the same level. At that time, your position meant nothing, and coming to listen to what some of the consumers were concerned about, what they wanted, and finally trying to -- admitting that they have to be addressed. And it was like walking on eggshells, some of the issues, but it was a good one. It was a good basis for where things are today.
13:54:06:10 - 13:55:06:05
Lisa: Can you give me an example, Nancy of one of the issues that was like walking on eggshells around?
Nancy: Well, some of it was relationships, intimate relationships with other people.
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They wanted to feel that they were the same as everybody else in the population, whether -- how deeply involved the relationships would be, but they wanted to have a relationship and sometimes a physical relationship with the opposite sex. They wanted to have the ability to have a boyfriend or a girlfriend, and there were a few that became intimate and did get married in our population.
With support, it worked out okay. So those were some of the issues. And more freedom to become part of the community and have opportunities to do things other than sitting in the wheelchair and being limited to what they could do.
13:55:06:05 - 13:59:11:03
Lisa: You mention other opportunities and I know that employment was a big issue for many people with disabilities, many self advocates. Can you tell me a little bit about the types of conversations around employment that came out of the collaborative?
Nancy: Well, the idea was that they should be able to have the same employment as the regular population. And sometimes with some attention to making some adjustments, if somebody was in a wheelchair, that was at the time there were no ramps for getting into office buildings, for getting into a lot of buildings, for people who could not manipulate steps, which could also contribute to the fact that they couldn’t get employment in certain areas. So there had to be a lot of accommodation that way.
Everything’s sort of spread out like you drop a pebble into a stream, you know, and it just ripples out. So the ripples had to be taken care of. All of a sudden you’re having ripples, and so it opened up a whole new area of concern as to how do we get people into positions of employment, and having vans that could transport them, wheelchairs and all, and being able to get through a ramp, or to get up several steps that they could not otherwise overcome. And do positions in an office, do collating, doing filing, instead of just stuffing spoons and forks into a plastic bag in a workshop.
13:56:40:02
Lisa: Well, and you mentioned workshops. I know that there was some feeling in the collaboration that workshops should be a thing of the past.
Nancy: This was a meeting that I think I referred to before, where Maureen Devaney had asked some of us from PATH to come down to a meeting. It was held at the policeman/fireman’s group in Spring Garden, where Judy Gran had spoken out from the Community Collaborative. The feeling was that they should abandon workshops, they should close them. And I listened, and then I raised my hand, and said, I was part of the Community Collaborative and no mention was ever made about closing workshops.
We considered workshops as one of many choices to be made. Some people would be very fortunate to go into a sheltered workshop. Some people it’s a stepping stone, but it should be one of choice. Not everybody can have employment in the community, for whatever the reasons are.
Not everybody -- the intellectual disability community is just as varied as the regular community is varied, with abilities and with what they would like to do, and with your abilities to do them.
And so we felt that we should have the same choices.
For those who cannot function in the outside world, for it may not be the ability to do the job, but maybe some behaviors or emotional problems that make them fearful, and don’t feel comfortable, or who are not accepted by their peers in a particular employment position, or maybe the responsibilities change after awhile.
I know someone who was employed by one of the -- like WaWa, to stock shelves, things like that.
Then it was a requirement that they wanted him to be able to read. Well he wasn’t able to read.
Well, that was the requirement, so he had to leave that job.
So and then in the summertime, during the year he works in one of the high schools in the northeast in the cafeteria, but in the summertime, schools are closed, so he has the opportunity to
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come back to the workshop if necessary, if there are no other plans. But he’s fortunate enough that he’s able enough now to go on trips, vacation trips with a travel group. So that’s how he’s advanced that way.
13:59:11:03 - 14:00:53:07
Lisa: So Nancy, in the collaborative, there were clearly differing points of view on many issues.
How did the collaborative work to resolve those issues?
Nancy: Well, the thing is, once I spoke up and said this was not part of the Community
Collaborative, that this was not an outcome to close workshops, you know, some people felt that we didn’t want to support bricks and mortar. Well you have to have some place to get trained.
Not everybody’s able to come out of high school. You don’t know what training went on in the school system also to prepare them, and we’re talking about lower level, not talking about the top level of intellectual disabilities -- people who can read, who can speak very clearly, who can verbalize very well, who are adept physically, manually, and for those who had to do a different level of jobs, who needed work training, and maybe a day program, or even in a workshop, our workshop, and I’m sure other workshops are similar, there are social employment skills that have to be taught, is how to behave with your peers there, how to dress, how to eat in a lunchroom, how do you travel, how do you get to where you have to go -- all these things have to be taught.
It’s not just a matter of teaching a skill, how to put a widget into a bag or how to assemble an electrical light, that kind of thing, how to do janitorial services. But there’s a social skill that should come along with it, and this is what we do. That’s part of the workshop also. You just don’t say, well here, go polish a floor.
14:00:53:07 - 14:03:02:12
Lisa: I guess I’m wondering a little bit about what the collaborative accomplished. I know its initial goal was to keep the city out of court, and that didn’t happen. They were back in court. But despite that, were there some successes?
Nancy: Oh sure, yeah, because we have the results today, where people are living in residential programs, where people are leading normal lives, going to the theater, going to sports events, being part of a group of their peers, traveling together, they’re out in the community, they’re accepted in workplace, they’re accepted in public places like supermarkets, where they’re out in the public. You may see some of them who are getting the carts together when they’re put in -- you know, after you fill your car with your groceries, and they take the carts back. They help to do some packing for whe n you’re checking out. They’re stocking shelves, they’re doing all kinds of things. So this is the outcome of giving people choices that way, and listening. So people did listen, and it was trial and error, you know, like anything else. And you have growing pains, but we’re successful today, and people no longer look askance at you, and there was somebody who was on television, there was a program about a Down syndrome, and so it’s not the unusual thing anymore, and you walk along and that’s just it And it’s just unfortunate that because of the economy, that these things are being cut.
14:03:02:12 - 14:06:22:17
Lisa: I wanted to ask you one more - -
Nancy: Go ahead.
Lisa: - - question about the C ollaborative if I could, before we move on to what you’re talking about. I’m wondering if you felt that you became a better advocate as part of the Collaborative.
Nancy: Yes, because it reaffirmed that you have to be positive, not aggressive, not t hat we’re obnoxious, but that you have to stand firm in your beliefs, and that you have a mission. I’ve always felt that, you know, once Robbie got into a PATH program, and she’s in a day program, I really didn’t have to do anymore, because personally she was set. But I felt that I couldn’t stop, and other people feel the same way. That’s why we’re still active at my age, or a little bit younger
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-- I’m one of the older ones -- but you’re still active doing what you can. Maybe in a lesser capacity.
I have a friend of mine, Lizzie Richardson, who doesn’t do quite as much physically, but she’s still there advocating. She’s still there supporting families who might have some issues, trying to disseminate some of the anger or the frustration in explaining how going on the offensive is not always the right way to go, and we’ve been friends for a long time. And through her group I’ve been honored twice, believe it or not. But yes, you stand firm in what you feel you have to do, and it’s a commitment. It’s a lifelong commitment that you have to advocate for people coming into the system or people who have been living at home and enjoying themselves, and who lose a parent, and the parent who’s in their 80s or -- can no longer do it, or that parent goes, and there’s no one else to stand by. These are the people that you worry about, because I’ve been told, somebody from the state level, to get into a CLA residential program today, somebody has to die. Which is a sad state of affairs, that somebody has to die for somebody else to get off the waiting list. So that -- the comm unity collaborative, for those of us who are part of it, they’re still committed. Eileeen Shane, for one, and others like her who are under her protection, and Kevin
Casey, who -- he was not part of the collaborative, but he was part of an advocate for a long time, before he became deputy secretary of MR. And so he’s still in the business. He’s not in
Pennsylvania anymore, which I think you can eliminate, but he went to another state, doing I think something similar. I think those of us who come from the old days, have a different commitment because we know what things we’re -- what was not available, and how the wars were fought so diligently to get where we are today, and don’t want to see it destroyed.
CHAPTER NINE: PARENTS AND ADVOCACY EFFORTS TODAY
14:06:22:17 - 14:06:22:17
Lisa: Do you think parents today understand what could be at stake for their children, given --
Nancy: Do they what?
Lisa: Do you think parents today understand what’s at stake for their children, if the current cutbacks --
Nancy: I really don’t know. I think there’s a core group that I think today’s parents are more concerned individually for their own child, but there’s always a core, no matter what or when, of parents who will continue to fight for everyone.
As I said, all these children are my children, and so just because Robbie is set and I feel that she’s set, she’s happy now, very happy now with her support that she’s getting, making strides, good, positive strides, that my job is not done.
So I have to be concerned about the fact that the services are still being provided to the best way we can, with the best staff that we can get, and that’s the mission. And I think there’s always a core that will continue that no matter -- and from the younger generation too, th ere’s always people. And there’s always people who, once they get their -- it happened to us from the Council of Concerned Families. Some members, once they saw that their family members got the support that was necessary, didn’t have to fight anymore, and they dropped out. But then there’s always somebody else who will fill in, who will continue, and that’s the way things are, I think, you know.
But I think now, because of what’s been happening, there’s a fervor that we cannot go back.
We cannot lose wha t it’s taken us so long to get. Because Pennsylvania was an example of what was good, and try to make it better by some of the people that we had. Nancy Thaler, Kathy
Sykes, Mike Covone -- these people, and Estelle Richman, when she came in, to close Byberry.
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And went on to -- what she went on to do, and concerned about the prison population as to how they would be treated.
Dennis Ozwald from CATCH, the MR director from CATCH , that’s always been a pet project of his. And so the staff that are there, Tom’s staff that are there, are so committed. They could work in community jobs making a lot more money, but they have a commitment, somehow or another, for human services. In fact, when we met at the police and fire association, when I met Mary
Curcio, the person there was from INTERACT. He’s our MR director. He came on, yeah. That’s when he changed and he came to PATH.
CHAPTER 10: REFLECTIONS ON LIFE, ADVOCACY
14:09:21:26 - 14:13:20:16
Lisa: So Nancy, I wanted to shift gears a little bit and just ask you about some of your reflections on your life and your career.
Nancy: Okay.
Lisa: The first question I have is about Robin, and I wonder if you can articulate what she means to you.
Nancy: She’s very precious to me. I can’t tell you how much I love her. I love to kiss the back of her neck. You know, like you do to a baby? The back of their neck is so delicious. I do that to her, when she’s going to bed, and she lays down, you know. We have our little routine before I say goodnight to her. It’s our goodnight thing, you know, and in between each word I have to give her a kiss. And she hooks her arm around my neck, you know, down to her, and I do this to her ear, and it is done every single night.
Joanne and I had something similar, but not the same language, and she does something similar to Arielle, you know, a special goodnight thing.
And when she gets up in the morning, it’s a kiss, and I kiss her just whenever I can. I always give her a kiss when she leaves. She cannot walk out the door unless I give her a kiss, and she gives me her chin. So … you know.
14:10:47:13
Lisa: You talked about the language you use when you have your bedtime ritual. Can you tell us what you say to her?
Nancy: Let’s see now. I’ll say to her, “Are you going to say goodnight to your mommy”? Give her a kiss. Are you going to say ‘sweet dreams’? And give her a kiss. Are you going to say, ‘see you tomorrow morning ’? Give her a kiss. Then I say to her, are you going to say, “I”, and then a kiss, “love”, and a kiss, and “you”, and a kiss. Then, the hand that is free, I hit it like this, Robbie is a mommy’s girl, Robin is a mommy’s girl, Robin is a mommy’s girl, Robin is a mommy’s girl.
And I’m patting her hand to that rhythm, and that’s our final kiss. Then I turn out the light. Then I have to turn it back on again. Yeah, she has to fall asleep with the light on. But this is the routine.
It’s been going on now for 55 years.
No, but she’s very precious to me. I can get annoyed with her, don’t misunderstand me, when she’s extremely demanding. The aide is there, and I’m here, but she only comes to me. And if the aide gets up, she will take the entourage, you know, but I have to come along too. So and it sometimes gets to be a bit much for me. I can’t always do it, because I get short of breath. Just from walking maybe -- I have a twin rancher, so everything’s on one floor, and sometimes just going from the living room to her room, and doing whatever has to be done, she wants the sheet changed or something like that, by the t ime I’m finished, I’m short of breath. So -- or I’m tired, or I
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know it’s the fifth week so I’m due to have the infusions, and everybody knows when I’m due. It’s really flagging at that time. So I can get a little short with her, and say no, you have to sit down.
Or she loves Lawrence Welk, and she wants it on -- when she comes home she wants it -- on
Sundays she’s got to wait until 8:00. I have to watch my news programs. I’m a news junkie, and she has to wait, and sometimes she doesn’t like it, you know. But she’s the reason I get up in the morning.
14:13:20:16 - 14:15:04:24
Lisa: What has Robin taught you about life?
Nancy: About life? It’s very precious, and make the most of every day, and you find delight in the simplest things. You know, when children are little and they see their first bird, or they see their first flower coming in the spring?
You know, I have a small park across the street from my house, and they see the clouds, or -- and they point out -- so you see things again, all over again, from little children. And also with
Robbie, when I find out she’s -- when she wanted to get somebody’s attention, she would sometimes give them a slap on the shoulder, because she couldn’t say anything, she doesn’t speak. She makes only noises, sounds. Though s he does say “mom-mom,” or we say that she’s speaking French. She goes, “oui, oui, oui”, or you know, so we say, “Well she’s speaking French now ”. I’ve never been able to discern any of her sounds to a particular word; I have not figured out the dictionary yet with her. But she does know ‘mom-mom’. And it’s your values, your expectations, and to enjoy the world around you. Fortunately my younger daughter is that way.
We can look at a sunset, or sometimes after a very heavy rain there’s always a rainbow.
14:15:09:10 - 14:16:52:19
Lisa: You were talking about your daughter, Joanne.
Nancy: Yeah, when she had gone down -- she had met Richard in Miami, Florida, and they moved to Georgia and she went back to finish up her degree. I went down for her graduation.
We had gone down to Savannah for the day, and it had rained, and coming back it was the
Lumbar Poplars, you know, its like a cathedral drawing, and it was just so beautiful, and we both just looked at each other and said, it’s so gorgeous.
But at home, after we have a heavy rain, there’s always a rainbow here, always have one or two rainbows, sometimes a double one, and the world looks like it’s been freshly washed, you know, where the blues are really blue and the green is so green, it looks almost like a painted backdrop.
And this is what I enjoy. I’ll say, come look outside. So life becomes much more simpler, as to what you enjoy. The material things are not that important, although my paintings are, the ones that I have at home. They are all memories of some of our trips that we brought back, my husband and I. So when I repaint the house, everything goes back to where it was.
But -- and she has brought me so much pleasure, even with all the difficult years, and now as I started to say, when she wanted your attention she used to slap you on the shoulder to get your attention. Now she goes like this, she just gives me a little tap on the shoulder.
14:16:52:19 - 14:17:51:18
Lisa: Nancy, how would you describe yourself? How would you describe yourself?
Nancy: I don’t know. I don’t know how to describe myself. I’m a mom, grandmother, love my family, devoted to my nieces and nephews, and who always think of me. We’re always -- one thing is that when it’s a family dinner, family celebration -- I’m not talking about weddings and things like that. I don’t expect Robbie to come, she would be out of her element.
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But when it comes to holiday dinners, Robbie is always included. Otherwise I won’t go. She has to be included, and she looks forward to it. She is so happy when we get there. And they make a fuss over her, which is -- and she’s happy as can be. She’s a happy kid. So she’s happy, I’m happy.
14:17:51:18 - 14:20:06:11
Lisa: What do you feel your biggest accomplishment has been in life?
Nancy: My biggest accomplishment is seeing the changes that have occurred in the system, that people like her are valued, and that’s why I still stay in it. And when I see things happening in a good way, and there are other people like me who care the same way, I feel then there was a reason for me to be alive, to be on this earth. There’s a reason for it.
And once, somebody said to me years ago, there was a reason why God gave you Robin. Of course at that time I couldn’t see it, because I didn’t worry about myself, I worried about her future.
What would she have been like if she had been born normal? I think she would have been something special. But she is special, you know, but I worry about her being isolated, you know, and she’s not. So she has one-on-one and she’s included when -- it was last week when she had her second injection in her knees. So I brought her -- we got to program around 10am, and they said, oh Robin’s here, and everybody applauded, you know, and she was happy as a lark. So she’s part of the group, and that’s important to me. So that’s it. I’m happy.
Can’t do the traveling I used to do, which I used to love, but I’m living it, so I accept it. I get up to
Penn State once a year for their arts and craft show in July. I was there last year. Went to Penn
State and everything for the weekend, with my sister and brother-in-law, and my Joanne, and my
Arielle. So that’s it.
Lisa: One last question for you: how would you like to be remembered?
Nancy: For being Robin’s mother, for being and having the joy of Joanne and Arielle, and for trying to make my surroundings a better place, my environment a better place, my world a better place. That’s it. Can’t ask for anything more than that.
Lisa: Thank you.
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