Eleanor Elkin Interview Transcript

Chapter 1: Childhood, Marriage and Family

Lisa: Eleanor would you tell us your name please?

Eleanor: (01:04:59:27) My name is Eleanor Scott Elkin.

Lisa: And where were you born Mrs. Elkin?

Eleanor: I was born in Philadelphia in the Logan section.

Lisa: (01:05:13:24) What are some of your earliest childhood memories?

Eleanor: (01:05:17:14) It’s hard to say what my early childhood memories are because some I remember because I was told. But I do remember one of my sister’ boyfriends riding my kiddy car and breaking it. I must have been pretty small but I was very interested in her friends because they were older. My sister was ten years older than I and I adored her and I thought all these people that came are so interesting. I remember my grandfather and his name was Steven Manderson and he had been ill and came to stay with us for a brief time. And he was having difficulty walking. He didn’t have a walker then. He learned to walk again by pushing my baby carriage. So I’m told. I of course don’t remember it. But he walked me all over, he even found a farm somewhere near Logan. I guess that wasn’t too hard then. And so we saw chickens and cows. He made friends with the children in the neighborhood and he would take us on trips. I do remember going down the river to I think it was called Riverview Beach. It’s on the New Jersey side. And it had a merry-go-round and it had a beach. We would take our lunch and go there and we would have a nickel to ride the merry go round. He would give us an extra nickel to go get ice cream and we would come home. He was a very interesting gentleman. I’m not sure what he did for livelihood because when he would get better he would disappear. I know he went to Saratoga so I suspect he had a gambling streak. Maybe that’s why I like horses now. We would send my brother and sister and I we would get a huge rolled up package every once in a while and they were funny papers. Comic books were not around and the different papers had different comics. And oh boy when new would get that big roll of comics we were in heaven. It was great fun. And on my birthday I would get a five dollar gold piece. Now that was a lot of money. My father would put it in a bank account for me so I had a bank account practically all my life. Other things I remember about my childhood are we lived in Logan and the house had steps leading to an enclosed porch which was the way we went in. We would play games on those steps and whisper down the lane and various games on the steps. I remember that- I don’t know why they liked our steps better than the others but they seemed to like our steps a lot. And that was fun. I’m running out of things from my early childhood. Is that enough I hope?

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Lisa: (01:08:45:09) So Eleanor you mentioned your very lovely grandfather and you mentioned a sister. I wonder if you can tell me who the other members of your family were?

Eleanor: (01:09:15:27) Well there was my younger sibling was my brother Bob who- my sister was 10 years older than I and he was 6 years older. I was the baby. He was old enough when I was born, he was in school, and he would come home and meet me when I came home for lunch or whatever. So they tell me about my birth. Oh you know what I looked like which apparently was pretty bad. So I was so little they could put my head in a tea cup. So in case you wanted to know what’s wrong- it started at birth. But they were both fun. My sister, I mentioned and I adored her, and she used to make up projects and do work with me and we’d do doll house stuff together and paper dolls together and design dresses. And Bob was the main tormentor. He liked to tease me. But he never hurt me or anything- he liked to tease me. And he went off on his baseball, he had important things to do like baseball with the kids in the neighborhood. We lived on a street that had four corners and that was where the baseball field was and I’m sure other neighborhoods around did the same thing. My sister began to date and that was pretty exciting and my brother-in-law who was one of her early boyfriends, from high school time even, often teased me about how I used to put my sticky hands on what he called his boiled shirt when he was dressed up to go to a dance. Cause he used to play with me and he was tall and slender and he would make a seat with his hands and I could sit on it and he could swing me between his legs. I thought he was just the best boyfriend she could possibly have. That’s things I remember particularly about Margaret who became you know- she was my sister and my friend all my life. We stayed together. We didn’t live in the same place. She lived in New Jersey and I lived in Pennsylvania but we always were together and our families were friends which were very nice.

Lisa: (01:11:53:18) Can you tell me a little bit about your parents, Eleanor?

Eleanor: (01:12:08:04) My parents- they were wonderful parents. My father was a builder. He built schools and hospitals; big buildings not houses. My mother was a stay at home person she was not employed at any time. She was employed before they were married and she was very proud because she was a college graduate. She graduated from Philadelphia Normal School and that was quite an achievement and she was then certified to be a teacher. She taught sewing in Philadelphia schools and was very, very clever at designing things. She could get a piece of material and wrap it around and make a dress out of it. I never could do that but she did teach me to sew for which I was very grateful. I didn’t like it when I was little because she made me do what they call samplers. You’ve seen pictures of them- they’re still doing them and it was no fun. But at least I learned how to do basting and over-casting and blanket stitch and so forth, which was useful later. It was great that she could do that because we could design clothes and I could have something that I couldn’t have bought in the shop, which was wonderful. And my father was very supportive of most everything. When I got in trouble and I was sent to my room sometimes at supper time when I couldn’t

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have any supper- of course I always got it somehow but he would come home from work and he would come up the back stairs- back stairs are wonderful, they don’t have many of them anymore they are so nice. He would come up the back stairs and come into my room with goodies and say how are you, you know, what are you doing in bed. And he would help me make peace. One day he came in and I was sick and I was sitting up in bed- you know they used to make you go to bed when you were sick- they don’t anymore. So I had been put to bed and he came up and he said, “feel in my pocket” and I felt something soft and he put his hands in and he brought out a little white puppy. We named her Fluffy, she was an Eskimo Spitz. And my joy you know- but that was the type of thing my father did but always supported me all my life. All my life he was always there for me and so was my mother. Not that we didn’t have disagreements- every family does but they were never serious disagreements. I always knew that I could count on them. I never worried that I’d hear about crashes in stock markets and people not having enough to eat. I never worried about it and I guess we did have hard times but it never affected my life I always felt secure. That’s an accomplishment for parents to do I think. I think about it now and I thought I guess we weren’t kind of hard up. My father lost his business and he found some work here and there. He always managed to do it in construction so eventually you know he got back up but in that time mother never made us feel- you know she never said you can’t do this or that we haven’t any money. I never heard that. She always had some tucked away somewhere. They were great parents I was very fortunate.

Lisa: Thank you. They sound like wonderful parents.

Eleanor: Yeah, they were.

Lisa: How would you describe your childhood?

Eleanor: Happy, naughty- a very good childhood. Lots of opportunities, friends, neighbors. Was that enough?

Lisa: Absolutely. Do you remember when you were a little girl what your hopes and dreams were for the future did you know what you wanted to be or do?

Eleanor: Well I’ve changed my mind several times. One time- well I was quite young and I was going to get married and I was going to have a farm full of animals. And another time I was going to be a veterinarian and I never thought I was going to be a teacher or anything like that. That sounded terrible to me. That was a fate worse than death if you had to be a teacher; because my mother was always pushing it. But I always wanted to have- they used to ask what do you want for your birthday and I’d say a lamb and a bear. And I wasn’t talking about a stuffed animal. I wanted the real thing. Of course, I never could have it and I knew that but that’s what I wanted. So I always liked animals and I really wanted to do something with animals. I never did but when I was little that was the way I thought about growing up.

Lisa: Can you tell me a little bit about Mr. Elkin?

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Eleanor: Oh, he was wonderful. Phil- my husband was a very fine man. He was fun he was very firm. When I married him I thought I was marrying a big shoe tycoon. His father had a shoe factory and they made high style ladies’ shoes. Very expensive “$19.95” they were very, very expensive. And beautiful, beautiful so I always had my shoes [laughs]. But the war Phil decided for a number of reasons that he was not going to be a shoe tycoon and he went back to college on the G.I. bill. He had quit in his junior year at Lafayette because the time- the economy was low and he said I’m not learning anything here that I can go out and get a job tomorrow. He was helping in the student place where they went in to get jobs. He looked at the best job he could find and put himself in it and it was a great job it was pushing stock in Woolworth’s in New York where his mother lived. And so he did that for a while and then his father said enough of this, if you’re going to be outside come and learn the business. So he made him learn to make shoes from the ground up. He made him go to leather factories to learn about tanning, he went to learn about dyes, he learned about cutting, he learned about lass and how you put a shoe with the leather on the lass to make a shoe. He had to go through every one of those and then he sent him out on the road to sell after he had learned to make a shoe. I met him when he was just starting out on the road and I always said his father sent him out on the road to get him away from me- I don’t think that was true [laughs]. But he went from that to deciding that he was going to do some work in insurance because his father had a fancy trust, his father had died at that point it was after the war and Phil said if he’s going to learn how to do about this trust and save the family business and so forth, he better learn something about it. He went to Penn on the G.I. bill and took some courses in business. And they convinced him that he should stay in the field and be a professor and teach for them; which he did. It was actually a very good thing because he then continued- he had gotten- he had finally graduated from Lafayette 15 years after he started. On the G.I. Bill. And then he was at Penn so he took his masters and then his P.H.D. at Wharton School which was- by that time we had children. I took the kids to his graduation which was kind of fun. I’m not sure they thought so but I did. He continued as a professor and he was- I know I’ve met students and sometimes I had them in my house lots of times. But later when they were not his students when they had graduated they would say he was a tough professor. He was the toughest one I ever- I think they either loved him or they transferred. He was tough. He demanded them- you know, not perfection but to do the work. If they came in unprepared he made them leave and that wasn’t nice so he made some enemies. He said learning’s painful. I still hear from students and I have two that take me out to dinner every so often- separately. They know each other but they live different lives. It’s very nice. It’s very nice to hear from them at my old age.

Lisa: Well it speaks to your husband’s legacy.

Eleanor: You never know who’s life you are touching.

Lisa: Do you remember the first time you saw Mr. Elkin?

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Eleanor: Oh sure [laughs]. I was- I had a heavy date on Saturday night. Friday, I went to the hairdressers and that was when they set our hair in pin curls- you probably wouldn’t know about pin curls. [To Lisa] You do know about pin curls. I had a head full of pin curls and that gooey stuff they put on and I wouldn’t let her comb me out because I had this heavy date the next day and I didn’t want it to be all out of curl. And I knew how to comb it so I had a head full of pins and a bandana and I had been to work but I didn’t want to get anything on my work clothes so I had on what you would call a housedress. So I came home- I had sneakers on, bobby socks, and a house dress- oh I was great. My friend and her boyfriend and Phil were sitting in my living room at my mother’s house- where I lived and they wanted a fourth for bridge. So, we played bridge. And I was kvetching and I thought he seemed like a nice guy but I didn’t pay too much attention to it. He asked me afterwards for a date, I don’t know why. But it went on from there but that was when I met him in my own house and it was just great I mean he liked me. Apparently I played bridge okay. It just went on from there I continued to date other people, I wouldn’t go steady and not all my friends did- now you know you have one boyfriend and that’s life or death- not then, not then. It was much more fun. Of course you always had the problem if somebody was going to ask you out on Saturday. But it was fun.

Lisa: What did Mr. Elkin look like?

Eleanor: There’s a picture of him right there.

Lisa: You tell me.

Eleanor: Oh he was really very handsome and especially in his shoes. That’s one that was taken at what is now Philadelphia University. He was quite good-looking. His mother was very attractive, his father wasn’t. His father looked a little like Adolph Menjou. But she was a beauty- his mother was a beauty. She had been in show business, not any big parts but she earned a living in show business. Phil had been in a couple of minor things I have a couple of photographs, I think I still have them, that were his publicity photographs when he was like 14. He learned to drive a car while they were in Hollywood. Apparently you didn’t need a license in those days in Hollywood. They rented a car and Phil did the driving. He was 14, but he was big. He wasn’t extra tall he was just barely 6 foot. 11 and a half inches or something like that. But tall enough that he looked pretty manly even as a kid. But he really was handsome. I’ll have to dig out an early photograph for you.

Lisa: What kind of a father was Mr. Elkin?

Eleanor: Phil was a very good father to my children. Richard was the first one we had and when we were bringing him home from the county office where we went to pick him up, unexpectedly, we were walking down the street- we lived in Doylestown and we could go from the juvenile court office to our house it’s only about three blocks. So we were walking and he was carrying Richard who was waving and bobbing around. He was two months old and he was pre-mature and Phil said, “give you odds, he’s not

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right.” And he said but it doesn’t matter. He doesn’t remember ever saying it. He never remembered but I remembered and it gave me courage. It made me think okay Phil’s going to help me and he did. And we were offered- we had the opportunity to send him back. Small town- there’s a lot of talk and of course it went around that this Elkin kid sure was funny looking. And I didn’t know at the time because I didn’t know enough- only my sister had babies. I never thought about development. It wasn’t anything I was interested in- I was interested in boys at that time. I wasn’t interested in babies although I babysat a lot and I loved it I liked to babysit. But no I said you don’t send babies back, you don’t turn them in like cars you know. We had had him then probably about two weeks and by then he was my son. He wasn’t at first; he was this doll that arrived. I didn’t have any maternal feelings and I thought [there] must be something wrong with me. I thought I would have this great gush of “oh I’m a mother.” Well it didn’t happen until I had had him for a little bit and then there was no doubt- there was no doubt. And no way were they going to get him back. I’ll roll up my sleeves and go-. So he stayed with us and Phil was very helpful. He did the 2 o’clock feeding! Because I would be tired and if I don’t get my sleep I’m not a happy creature. I’d nudge him and say Jim it’s 2 o’clock and he would get up and feed Richard and then put him back in the crib and come back to bed. And he did that until Richard didn’t need the two o’clock feeding. By that time Margot arrived. Well when he saw Margot, Phil was at college doing something and one of his friends who were doing some typing for us went with me up to pickup Margot at the same place. Well she was the exact different. She was a bouncing, beautiful child and just full of it. When Phil saw her I was changing her. We had a bassinette that had a metal top, an aluminum top, and she was banging her heels and hitting the thing with a rat-a-tat-tat-tat-tat. And Phil thought that was great and he sang to her “little girl you’re the one girl for me” which was a popular song at the time. He liked to sing in a pretty good voice and he was very supportive of the kids. Now, he wouldn’t stand any nonsense. They knew if daddy said “no” you better pay attention. He never whipped them or anything like that but he scared the- he scared them! Just with his voice and his mannerisms they towed in right away they didn’t want to be on the wrong side of daddy. The only time he ever touched them, we had the children- the house we lived in Doylestown was an old Victorian twin and had been made into two apartments. So the first floor was rented and we let it stay rented and we lived on the second and third and the kids were up on the third floor and they were told that they must never hang out the window. Well we had- you know windows were different they had pull-out screens, you’ve probably seen them and in the summer we put those up because getting ones to fit were difficult and you had to have somebody climb up to the third floor it was very expensive. And Phil had parked the car in the back and was coming out the side street, we lived on the corner, and out comes the screen and almost hits him and two kids are leaning out the window. He came in right up to the third floor and he made them lean over the bed and he whacked each one on the bottom. Well they screamed and carried on something terrible but they didn’t know about child abuse, unfortunately. They would have been right away to the- and that’s the only time he ever touched them. And he said I saved your life you nearly

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made me have a big accident and they never did that again I assure you. That’s the only time he ever touched them, other than hugging them.

Lisa: Eleanor what is your favorite memory of your husband?

Eleanor: My favorite memory of my husband. Oh gosh, I’d have to think about that a while I don’t know what’s my favorite memory of my husband I have many. I remember dancing with him I remember riding- we used to takes rides in the country. Just to take a ride, you know you used to do that. Nobody does that anymore are you out of your mind gas costs too much. But we’d go out, take a ride and then stop and have lunch or something then come back home and we’d pass a beautiful place mainly a hillside; with animals of course does that sound familiar? And I’d say oh look at that isn’t that beautiful? And he’d say yeah someday baby, someday. It was always someday. When he- when we bought our place, our second home in Vermont, which was his sixtieth birthday present of him. His birthday to me- he gave it to me. We looked at each other and we said “someday.” Now those are precious memories, well I don’t have a favorite I don’t think. Lots of good ones. Lots of good ones.

Lisa: Would it be all right if I asked you how Mr. Elkin died?

Eleanor: How did Mr. Elkins die? He had diabetes and complications from diabetes. It was- when we moved here in 1988- the end of 88’ he was saying, “I’m losing my happy home” and I said no you’ve got a new happy home. And he kept saying I won’t be here and he kept saying it off and on had been saying it for a couple of years. I won’t be here for this, I won’t be here for that. And he was not that old. And I finally said I’m tired of hearing this just how long do you think you’re going to live? He said about 2 years, he’d [leave] 2 and a half. And we moved here because I knew I was going to need more help with him and I knew this was a place that I could get help where I needed it. Actually he stayed in the apartment with me until six months before he died. His last six months he was down in our nursing area and he fell so many times and he was a big man I couldn’t pick him up. I used to get one of the security guards to come up and help but it was getting too difficult and we had to take him off to the hospital after one of them and when he came back from that he went right into the nursing section. He was not happy in there but he knew he needed it. But I was with him all the time and I learned where everything was in the cabinets I knew where the clean sheets were, I knew where everything was and if they weren’t taking proper care of him I was out on the floor saying [?] you better come in here, he needs you. They respected me and I mean yeah we got along okay. But he got so he couldn’t speak and I that was very difficult I mean such a brilliant mind; he was a very brilliant guy. He could not his head he could squeeze my hand. The only time he ever spoke, and this is one of my favorite memories of course I treasure; I used to go down and stay with him you know after dinner and til it was time to put the light out and I said goodnight sweetheart I love you. And he looked up at me and he said, “Goodnight sweetheart I love you.” Those were the only words he had spoken for months and he never spoke again. But I treasure those. That’s a happy memory.

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Lisa: Eleanor, this will be hard to put into words perhaps but I’m going to ask anyway. What did Mr. Elkin mean to you?

Eleanor: What did my husband mean to me? Everything. He was my husband. He was my life. I had some friends here who said you really should put him down in the nursing section. I’d say no I won’t do that; he’s my husband. He meant a great deal to me and I miss him. I talk to him [?] and say why aren’t you here for this, I need you. And every once in a while I give myself a memory hug and feel better about life. Yeah I miss him. He meant a lot. He was my love. He was my lover and my husband.

Lisa: Eleanor, I wanted to ask you about your children.

Eleanor: You would like to know about Margo and Richard. Richard was the first one. I think I mentioned that. And uh, you want to know about his whole life from babyhood on or his more recent life?

Lisa: How about… how about when you first brought Richard home. Let’s talk about when you first brought Richard home.

Eleanor: When I first brought Richard home I was at a loss. I mentioned our walk down the street so I won’t do that again. I had no crib. I had no clothes. Nothing because I didn’t know he was going to arrive that day or any other day. I knew he had been born and I knew he had not been well in the preemie nursery and I didn’t know if I was ever going to see him. And I said I still want to. They said, “But he’s sick,” and I said, “but I still want to see him.” And of course they gave him to us. So I got out a bureau drawer, I had a large antique bureau in one of the rooms and it had big wooden drawers and I put a pillow case in it, sheets, a pillow case and some small things and he came with one change of clothes. And so, he was all right with diapers for a little while but the county was really nice. They came down and knocked on the door and handed me a bundle of beginning things, which helped. He was no, he really was not hard to care for at that time. We called him the weaver and bobber because he never, he couldn’t sit straight. He was always weaving. And uh, but we bathed him in a big dishpan on the table and it worked. He didn’t mind. He wasn’t hard to take care of. He uh, he didn’t talk for a very long time. He sucked his thumb which would make him go “ouiee ouiee ouiee” because the thumb in his mouth. And he used that as sort of expression. We took him out in the carriage and walked him around town proudly but people kind of didn’t know what to say except, “he’s looking better”. He did go to school. In the first class for trainable children in Doylestown. That’s another story but he went to that first class and he got along fine. Had a good time, made friends, loved the teacher and her mother who was her aid, Ms. Dawson and Ms. May. And he was in that class for several years, well, probably six. Anyway we moved to Reading eventually. I think there was another interval but not important. And he went to another school where he had some difficulties because they didn’t believe he was more able than he was. He had by then he was talking and he had a vocabulary, which was surprising. For example, one time Margot wanted to make a cake and so I had cake mix and so forth and she was working

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on it. It was wonderful and we had it for dinner. And Richard said, “Margot, this is a very good cake. It’s delicious and you used excellent ingredients.” I wrote it down I was so surprised. Excuse me I’m going to cough. (Coughs) Because I was not aware that he used those words. I guess he used some before but we never talked baby talk to him and so he just picked up words that we said. So did Margot. She did it in a different way. She would say, she had very good speech. She spoke early and spoke well. But she would say things strange like “mato” instead of tomato and “moatmeal”. I kept thinking, “why does she say those wrong?” and then I realized she was hearing what we said. We said tomato. Mato. Tomato. Mato. So she said mato. Mato. And moatmeal was “have some oatmeal”. You see how Philadelphians slide things? Other than that, I remember those two incidence I mean those two words particularly. She spoke very clearly and was quite physical too.

Eleanor: I didn’t have to worry about her falling out of bed. She would climb out so finally I just put the side down. I left the side up for Richard because he would stand up and shake the crib and dance. I was afraid he would fall out and he probably would have. And so it wasn’t until I felt secure with him and then I got him a junior bed. He didn’t fall out because he was bigger then. He knew that if he rolled and fell on the floor he would get up and get back in bed. But when he was smaller I had to keep him more confined. Margo, I had to keep when we had a front porch in Doylestown we were on the corner as I mentioned. The house was practically on the street. We had a tiny winy postage stamp little yard in front. I would get them out there. I had a playpen for Richard and a chez that Margo liked to sit in and we had a little dog and if I wanted to go in to get the phone, or whatever, I couldn’t leave them. I could leave him but I couldn’t leave her. She was like lightening. She would have been across the street flattened by a car so I had a harness on her and a dog chain. Big chain that I used to have in the back yard that I used when I let the dog out. I had a circle on a wire and I’d place one end of it on the dog and let him go and he could run up and down the length of that wire, big heavy wire. But I put it on her. I brought it over, wrapped it around the post. I remember I was mentioning that with my grand daughter when she was here and she said, “Ahhh. You put my mother on a chain! Horrors, horrors.” Later when she had a little boy who was grease lightening, she had him on a leash. Wasn’t a big chain, but a leash. But Margot, I have a picture of her sitting there, quite happily, looking at a book with her legs crossed with a big chain on. (Laughs). We did everything together. I had just one coach but I had one of them sitting in the front of the coach and one of them sitting in the back. It worked pretty well until one time I went into a bakery in town and I left them outside and I said, you know, “be quiet” and the next thing I know the coach was upside down. Margo had decided to get out. She didn’t get out because she was fastened but she was in the end and was hanging over and the whole thing tipped. So I had to be very careful. I never did that again. I never left them. They had to go in the store with me. That was the only time we had any trouble doing everything together. We went on trips, they both went. We had a birthday party, they both went. Somebody said, “oh it’s so difficult to take care of two.” It isn’t once you get passed that 2:00 feeding and I was already passed it when Margot came. So we didn’t have that problem.

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I had two high chairs. You pick up the spoon. They each have their own. You put a spoonful in one mouth and a spoonful in the other mouth, you know? Worked fine. They were company for each other. Do you want to know more about them?

Lisa: (01:50:07:15) I do. Absolutely. I want to know if I can take you back to two things that you said earlier in our conversation. At one point, you said Mr. Elkin, you said Mr. Elkin describing Richard as not seeming quite right and you also said people noticed Richard in the baby carriage and said, “well he looks better”. Can you describe Richard when you first met him and when you first brought him home?

Eleanor: Well he has short up… Richard when I first met him had short upper eyelids, still did at his death, and so that he never closed his eyes tightly without great effort. He could close them but in his relaxed position, they never closed. It gave him a tip look. People would say, “oh he’s down syndrome” or you know, “oh he’s a Mongolian idiot” was one of the favorite terms they used for Down syndrome which is a terrible term. I would say, “No, he isn’t” because he didn’t have any of the other characteristics. And actually his eyes were not like Down syndrome. They were just his own short eyelids. He was very thing because he was a preemie. He weighed, uh, at two months he weighed 7 lbs. and that’s when I got him. And of course we fed him. Bill gave him his 2:00 bottle and he did gain weight. I think that first picture you may have seen or somebody did, I have it there, is me holding Richard when he was probably a month more old- maybe three months old there. Two and a half. But he was you know, he had fat cheeks and began to fill out. He used to, he loved music and he would dance because there was always music in my house because Phil liked music and Phil played instruments. He would get his instrument out and I would play the piano which was pretty bad but I could fake it. The kids would like that. Yes.

Lisa: (01:52:23:21)- So when did you first realize perhaps Richard wasn’t a typical child?

Eleanor: We were dealing with it of course, not like we probably should have, kind of denying. But after Margo arrived on the scene it was obvious. I mean she was younger by four months and she was so far ahead if him that it was, you couldn’t kid yourself. So I took him, both of them, actually I had been taking him, both to a pediatrician. Just started. I got the names of the pediatrician that had been at University when he was born and his wife, the doctor’s wife, was also a pediatrician. They practiced together. The were then just starting, sort of, and they were in West Philly so we went down to see them and they confirmed, of course, that Richard had a problem and made some suggestions and helped us, you know, with dealing with him. They were very, they were wonderful pediatricians. Margo bounced along her own merry way. They both, you know, they’d go to the doctor together. At one point Margo was more of a problem at the doctor than Richard because they wanted to give her a shot. She was not about to have it and she kicked the pediatrician and she was pregnant and I was frantic. Anyway fortunately it didn’t hurt her. I guess it wasn’t that bad a kick. So I had to bribe her that if she was a good girl and got her shot, I would get her a pair of roller skates. So she got her roller skates a bit early. She could handle them. Of course I didn’t let her go beyond

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the boundaries of where we lived. As I said, she was physical. She could do all the physical things.

Chapter 2: Children and Family LifeLisa ( 01:55:33:22) : When we spoke last time, we spoke about your childhood and little bit about Mr. Elkin and married life and today we’d like to start talking about your family, your children. And I wonder if you could tell me a little bit about how your wonderful children Richard and Margot came into your life.

Eleanor (01:55:50:22): Richard and Margot came into my life because we wanted to have children and we were not so fortunate. We applied for adoption. Richard was the first one to arrive and it took us- I guess two years before we managed to get Richard he was premature and I knew he had been born. They told me he was in the preemie- word for babies- nursery. But they didn’t know they said he’s for you but you may not be able to have him because he’s not well. Well I was determined to see him and I tried to get in but they wouldn’t let me [laughs]. I went down to Penn- tried to get into the nursery but they wouldn’t let me see him. So I had to wait. But- we were planning a trip to New York for the weekend and I had been to the hairdresser and I was all done up in pin curls, I think I mentioned pin curls once before they must have something to do with my life apparently. Got a call from the county office; at that time all the children’s work was done through the juvenile court. There was no child welfare agency as such, or department it was through the juvenile court. I got a call, “come on up, we have your baby.” SO we went up together, Phil was home fortunately that afternoon- cause we were going to New York so he was there. We walked up and there was Richard- a scraggly little baby but I knew he had been ill, he was two months old at that point and he weighed seven pounds. We called him a weaver and bobber because he was always weaving back and forth because he couldn’t you know really hold himself straight. But we walked him home and on the way home my husband said “I really think there’s something wrong with this kid.” But it’s all right. It’s okay. We’ll have him anyway. He doesn’t remember saying that but I do. I never forgot it because it gave me strength many times that it was okay. It was okay. So of course we had neighbors that all wanted to see the baby and all looked a little shocked and began to say you really ought to send him back. I guess we’d had him about two weeks and the county called and said “do you want to send him back” and I said that’s my baby you don’t turn in babies like cars , you know. I had a feeling that a doll or something that was around. I had no maternal. I thought I should and I was a little worried but by the time that I’d had him a week there wasn’t any doubt who’s baby he was. We just say you know he’s our and he’s okay with us and we had several people that tried to make suggestions and others that were helpful. It wasn’t easy because we felt like we were fighting people who we wanted help from. Our parents were fine, our parents were fine. They didn’t say send him back. They helped. Both Phil’s parents and mine were just fine. And we had said that we wanted two children and I guess Richard was about nine months old and we got another call, Phil was not home at the time he was out at Penn doing whatever he had to do there and they said we’ve got a baby for you do you want her?

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[Laughs] One of his students was in the apartment doing some work for Phil and using my typewriter and I said come on you’re gonna help deliver a baby. So he got a kick out of that and we walked up together and there was a bouncing girl taking over the whole office reigning supreme. Completely different from what Richard had looked like. And she was five months old. Beautiful and just full of it. And of course we didn’t have her very long we had no doubt about Richard’s development. So I took both of them to see the pediatrician that I knew had been in the ward when Richard was born and of course they confirmed Richards disability and said where did you get her she’s gorgeous. And she was always a delight. Richard was a challenge and he was fun and he was funny. They were quite different because of course they came from different origins but Margot responded to everything she had good speech- picked up like we said- Richard picked up things too which was interesting to me. He said always talk to children and don’t talk down to them but we were not very much talking baby talk we talked silly talk sometimes but not baby talk. No itchy-kitchy’s. They had fairly decent language usually and Margot- I guess I don’t, I may have told you [Lisa] this before I’m not sure but Margot wanted to bake a cake so I got her the cake mix out so forth and she was working on it and she made it and she iced it and we had it for dinner and Richard said, “Margot, you make a delicious cake.” You used very good ingredients. I couldn’t believe that he knew delicious and ingredients. But you see he just said it like anybody else would. Margot had- did not, and I may have mentioned this to you too- she did not talk baby talk. She usually spoke words clearly but she had a couple that she didn’t and it interested me why does she say it she used to say instead of oatmeal, “moatmeal.” And I realized that I would say, “have some oatmeal.” And I slur, it sounded like ‘moatmeal.’ Have some oatmeal, have some oatmeal. And there was another one that I can’t think of right now but I will- similarly. It was the same kind of thing. Oh mato. For tomato. Tomatoes were matoes but she never heard the ‘T’ because I didn’t say it loudly enough. Other than that her language was very good. She was fun, we took them everywhere we went, not where they shouldn’t go of course you know we got sitters when we were going some place we didn’t think it was appropriate for them to go. Like dancing at the country club. That was not a good place. I took them to the golf course though while daddy finishes his rounds and then he’d come home but never [?] of course. But otherwise they went everywhere we went. All the family parties and if they weren’t invited to family parties we didn’t go either. And that certainly became clear to family very quickly. But my family was really- all the kids came. We took them to restaurants and sometimes had problems but most of the time didn’t. I used to take them out a lot at lunch. I was not employed, which was a good thing, so sometimes we all needed change and I’d say come on we’re going out to lunch and we’d go to some place in the country. We were living in Bucks County around that time. We had moved into Bucks County and there’s a lot of little places where you can go in together and get a hamburger or a peanut butter sandwich. We would go out to lunch- so they were used to going out to eat, it wasn’t like being in a restaurant where you had certain ways you had to behave but they were pretty good. I didn’t have much trouble with them that way. And Margo was very helpful to Richard of course.

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Lisa (02:04:43:04) : Eleanor when you say that sometimes you had problems in restaurants was it just typical kid behavior or was it the clientele perhaps reacting to-

Eleanor (02:04:56:10) l: Never had any problem with the clientele. They would sometimes ask are they twins and I would say no and that seemed to satisfy most people. Sometimes when I’d take them out in the carriage and I had to- I didn’t have a twin carriage I used a regular carriage one in the front one in the back and they would ask sometimes in town people that didn’t know me. A small town everybody knows but there are some who don’t of course. Are they twins and I’d say no and I’d say there’s four months difference and they’d get mad at me [laughs] and you know then I would explain that they were adopted but they both went to school and they both started first grade at the same time. But Richard wasn’t in first grade, he was in a special education class. But it was the first special ed class in the borough. Maybe in the county.

Lisa (02:06:05:01) : Eleanor I want to ask you more about that later but firstly I’d like to go back and ask you about the relationship between Margot and Richard what was their relationship like as brother and sister?

Eleanor (02:06:17:20): Really it was not easy for Margot with Richard. The relationship was they loved each other, they would both say that, but there would be times where you know they didn’t love each other. Or at least they didn’t like each other. I think they loved each other but they didn’t like each other, there is a difference. It was hard for Margot. She had to explain to her friends about Richard, “he learns slow you know” was the way she pretty nearly always handled it. He learned slow. And of course the children in the immediate neighborhood got to know him very quickly and I’m sure their parents also talked to them about Richard. So Margot would go off with her friends by herself- with them and leave Richard. Sometimes they did things together but they were things that you know they just couldn’t include Richard in. They were in the house all the time and they would include Richard wherever they could, kids were always in and out of our house. I had friends- I was a little late getting around to this business [babies] so I had friends whose children were already past the three wheeler stage in bicycles and they gave them to us we had three three-wheelers in the backyard. We used to share them with the children in the neighborhood so Richard was included in that because he could ride a three-wheeler. He learned how. Margot I know felt that Richard was favored and that he got away with things that she couldn’t and that was very hard to explain to her that I couldn’t always treat him the same as I treated her. There was a difference. I asked the doctor once about it because I was concerned; a psychiatrist. I said I just don’t understand about disciplining Richard. He was probably one and a half then or two. And he said what do you do with Margot? And I told him and I said you know I tell her that you can’t do that and if she’s really naughty I don’t mind putting my hand on her bottom. I never spanked her but I gave her sort of a push, an encouragement of the rear and he said well you do the same thing with Richard. There’s no reason to discipline him differently. And that helped, that really helped a lot. Richard wasn’t allowed to be just naughty it wasn’t cute, it wasn’t cute. You know it wasn’t real fun when he poured the soap flakes down the stairs. He got a hold of the

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box of soap flakes and he was having a great time shaking it around, shook it all the way down the third floor stairs. What a clean-up, what a clean-up! He did cute little things like that, they weren’t cute you know. When he learned to use scissors he cut up everything in sight. That wasn’t so cute either. I tried to have special times with each one not necessarily in the week but in the summer I always had at least a week with one just home and the other one away at camp or whatever. So one got complete attention and extra bonding, if you will. There was a rivalry, there was sibling rivalry all their lives. All their lives, it was always there. It was always there. They managed to get along together and of course Margot got married and you know she had her own life to live.

Lisa (02:10:23:29): You’ve talked about people reacting to Richard as a baby and even people saying you should give Richard back and I wonder if there was pressure to put Richard in an institution or if you ever considered putting Richard in an institution?

Eleanor: (02:10:58:15) People did react to Richard that you really shouldn’t keep that kid around it’s not good for Margot. It’s not good for her to have him around and you really ought to send him to an institution- well it wasn’t- first of all I wouldn’t, but at that point there was a waiting list to get in the institution. But there were other avenues available and the Wood School offered me a day program for Richard. The- Ed John Stone*? was the name of the president at the Wood School at the time and he did some work with our little organization and he said to me we have some day programs and I could see that Richard got one: get him here. So I thought that would be just great because Margot could do her thing and he could his. I made reference of this to the county, would they help me with transportation and they said they’d think about it and they said you know you have to spend money for transportation and it turned out they said well we have a better idea we’ll send him up to the Judge School. That was a private facility high up in the Poconos and I said no, no, no, that wasn’t what I wanted. It turned out they did, they actually did take him away from me and sent him there. That’s another story, it wasn’t good. We did get him back but that was a kind of pressure that was put on us- yeah it was pressure. It was pressure that we should do that. Now today that would be different but today that was considered unusual- people had nothing else. At the time that this went on with the county he was only four years old I guess or five and we had not yet gotten our special ed class- there was nothing we had a little- we had gotten together in the neighborhood and we had a little class in the Church basement with a volunteer teacher for you know two hours, twice a week or something. Which helped a great deal but there were very few alternatives. Very few and some parents were ready to climb walls. It was very difficult for them.

Lisa: (02:13:49:12) Eleanor can you describe the impact that having Richard taken out of your family had on you and Mr. Elkin and Margo.

Eleanor: (02:13:58:24) The impact it had- it had a great impact on us when they took Richard that time. It was hard to explain to Margot where her brother was and we said we’re going to go see him and we’re going to bring him home as soon as we can we kept telling her he was going to come home because we determined he was. It was terrible.

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It was an awful time. I insisted- they wanted to come to my house and get him and take him away and I wouldn’t let them I said I’m gonna take him. I have to take him there. My sister drove me and we did that but I never got past the living room at the place never. It was dreadful it was just terrible it was just it was heartbreaking but we kept pushing, you know. We kept pushing. It’s a long story.

Lisa: (02:14:54:13) Would you share it with us?

Eleanor: (02:14:56:05) If you would want me to do that now, you do want me to do that now.

Lisa (02:15:02:15) If you feel comfortable sharing it with us.

Eleanor (02:15:04:08) Yeah, I’m willing to share it. First of all we never got passed the living room and they took Richard right away from me and I had some clothes and pack of diapers and I said do you want these and she, Mrs. Judge said to me, well we’ll take them now but he’a not going to need them by the of the week. We’ll take care of that, and they did. They did. They got him toilet trained fast I don’t know what or how but they did. We weren’t allowed to visit for six weeks I think it was. It was a special time and that not unusual that was sort of standard. That was because the children had to have a chance to settle and get used to you not being around and you had to get used to it, to adjust. You don’t adjust, no it doesn’t happen. You don’t adjust. And then we couldn’t go when the six weeks was up because there was a polio epidemic and so they didn’t want anybody and that I was willing to honor of course. So we didn’t see him for a couple of months and we finally- when you can only go on- every other Sunday something like that. The right Sunday came around and we- all three of us went, Margot Phil and I, and we went up and as we got there when we parked the children were playing- it was a big Victorian house. A beautiful old town, a beautiful town. Big houses, big old houses. And there was quite a large yard and the children were out playing in the yard and some on swings to play with. There was one child who was sitting by- it was a shed I guess they kept toys in it or bicycles or something- so way back in the corner up against the shed, where there was shade, it was a sunny day, and we had announced that we were there and we went out to look at the children in the playground. A little boy came running across the yard saying ‘Joey,’ Richard’s real name before he was adopted. They had him in under his original name. “Joey, Joey, Joey, there’s somebody here you’ve got company and scooped Richard up in his arms- that was Richard back there all huddled up in the corner and scooped him up in his arms and ran across the playground with him. So we went inside and in a few minutes Richard came in. He had- now it would’ve been stylish today but it wasn’t then- his bangs hadn’t been cut so they were way down to his eyes and his hair was very long which it wasn’t the style then. When I look at pictures of him now it was kinda cute. We didn’t think so then. His shoes were too big, they didn’t have his own clothes on. But he came in and he stood in the doorway and he saw us and he burst into tears. So did we. It was horrible, I could burst into tears now- trying not to. It was a dreadful, dreadful experience. Nobody should have to do that. Nobody. It was bad for him, it was bad for

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us, anyway we took him out and we all went to church. And we all sat in church and cried. And then we went to the playground- by that time we weren’t crying anymore and I had taken his record player up because I knew that he would like that. He started to work on that right away that was a wind-up; portable wind-up. It was his favorite records and he knew- he picked out the ones he liked. He knew what he liked and Margot played on the swings and we played together and then we went to a Hotel and had some lunch and took him back. We took some pictures of him and we went again the very next time we could go and this time we had gotten a letter that I should stop corresponding. I used to send him- things that I could send a package of something that he could share with all the children like lifesavers or something like that. It said no more packages because if every child there got the same kind of attention that he got they would go out of business. The just couldn’t handle that. It was not right and anyway it was too upsetting to him because he didn’t know we were there anyway. If it was upsetting, and he didn’t know we were there, it didn’t add up and of course I was livid. I called Phil, he was at work, he was working on somebody with an estate plan no less. I said get him out of there and I told him what had happened in this letter and he said of course you know this means war. I said yes. So, we went up to see him right after that like as soon as we could go and we took pictures of him in the nude. I had had some correspondence with another person that said what they ate for breakfast was bread and molasses. They all licked the Molasses off. I noticed when Richard came home every time I gave him bread he turned it upside down and licked it. So that was probably true, anyway. She had given me extra courage because she had left and he liked Richard and so we took the pictures and we went to the [?] with the judge. As we’re going in Phil says now don’t get emotional- you’ve we’ve go to be- we’ll tell him the judge this and we’ll show him the pictures but don’t you get emotional. Guess who cried? Phil started to talk to the judge and he burst into tears. Don’t get emotional, I said I’ve got something to get emotional about. Then the judge said we could bring him home. He said I’m not sure this is the best thing for Margot and we said we thought so and Margot in the meantime was climbing all over the judge sitting in his lap and- [laughs]. So we brought him home and we stopped on the way home there was a church conference at one of the resorts in the Pocanos and so we stopped there for overnight and to say hello to friends. Richard couldn’t walk. I had to carry him into the dining room. Then when we got him home I sat him down in the dining room of that house where we lived and there was a closet there. He got in the closet and out came the vacuum cleaner. And he got the vacuum cleaner and was moving it all around it was one of his favorite things. I plugged it in for him and he was walking. I think he was scared to death before. You know really he was just turning into himself and that’s his way of being safe I guess.

Lisa: (02:22:35:19) Eleanor, I need to ask you, you mentioned taking photographs to show to take to the judge, why did you take photographs?

Eleanor: (02:22:45:07) Well we took photographs of Richard because we had noticed that- we thought there was malnutrition and we took photographs and he had a bloated

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stomach like he had eaten too much but that wasn’t what it was. It goes with starvation. I don’t think he was starved, but he certainly was mal-nourished. We took pictures to show the judge what he looked like. And it was effective. It wasn’t a horror picture, it was a straight forward picture this is what is happening to a little boy that shouldn’t happen. It wasn’t like you know- he didn’t have bruises or anything like that he had not been abused in that way. It was mal-nutrition; neglect. The abuse was neglect. There was a place to play but it wasn’t part of a program it was go out and play. Which isn’t bad necessarily but for Richard it was because the sun bothered him apparently and he was lonesome and afraid and he sat in the corner.

Lisa: (02:24:05:08) Eleanor, it seems when you’re recounting the story of it, everyone was so concerned about Margot’s well-being but how did Margot respond to her brother being taken out of the home?

Eleanor: (02:24:17:28) She missed him and she talked about it and I’ve- several times in the night I’ve woke up and she was asleep on the floor beside me. In my bedroom. She had come in just to be sure we were there. We lived in a old farm house and there were two bedrooms but it was separated by a bathroom. I don’t know what it had been originally because it obviously didn’t have a bathroom but that’s where the bathroom had been put and at each of the bathroom there was a bedroom. And that was each end of the house. That’s how big the house was and a couple times we found her on the floor. Occasionally she would come and ask to get in bed with us. But other times I just found- there she was on the floor, like the cat. Just to be sure we were there. When he came home then the rivalry started again because she had been the queen bee. She had been everything to all of us. Family and for us and that was for several months. Probably, I guess close to six months he was away. And then Richard came back and everybody was paying attention to Richard they were so glad to see him. So we had to even that out but she was the queen bee. And rightfully so. Rightfully so because she was a delightful child to be with and I took her a lot of places with me just the two of us. And I did that later too. We had time together. Richard always had Grandmom.

Lisa: (02:26:10:28) Eleanor, I’m sure it would be hard to choose but can you think of one of your best memories of Richard. Would you share with us-

Eleanor: (02:26:21:12) Special memories of Richard? Oh my. There’s a lot… I really should have had one ready for you because well—Richard was always outspoken with people and now I’m trying to think of a good one with that where he would imitate. He- well I’ll tell you one. This sort of [?] Margot had been naughty. It doesn’t matter why I don’t remember it and she was crying and I was [?] and he said what’s the matter with Margot? And I said nothing’s the matter with Margot that good spanking wouldn’t cure. And he said no, don’t do that to my little brother. She needs a good loving. That’s Richard. ‘Don’t do that.’ He always called her his little brother. Don’t do that to my little brother.

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Lisa: (02:27:28:04) Would you be comfortable telling us- we’re jumping forward a little bit. A little bit later on we’ll ask you a little bit more about Richard’s education and upbringing but we’ll jump forward a little bit. Are you comfortable sharing with us how Richard passed away?

Eleanor: (02:27:48:25) Yes, that’s okay. Richard was prone to fall and he had fallen several times and broken his elbow or that arm. He was full of metal in his right arm, all kinds of things. He set off the alarms in the airport. I had to warn them ahead because he would go berserk when the alarms went off. He had another fall. He was then living in his new condo on Germantown Avenue [with Florence Perdue] tell you a little about her later wonderful lady. He was with her and he fell again and broke his elbow, again, and she took him to the hospital she took him to Einstein because that’s then where they were going to the doctor. And it was not too far away. And they called me and said that they had x-rayed it and they didn’t think there would be any problem in setting it- in fixing it but they thought there was fluid in it and they wanted permission to drain the fluid which meant they had to put him under anesthesia. And they needed my permission and I said are you sure, you know, do you really need to do it and they said they thought it was essential because it would become infected and so forth. So I gave them permission to do it and they were going to do it the very next morning because they wanted to get that done so then they could set the elbow. So I said I’ll be there and they told me a time- I don’t remember what the time was it doesn’t matter but I got there about a half hour early and he was already in the E.R. and Florence was sitting in the waiting room so I spoke with her and pretty soon they brought him down and I stayed with him that day. I think that was Saturday, anyway I came on Sunday and visited him again. I think Florence must have been there all night because it looked like she had. And she was capable of doing that. I stayed with him and you know fed him and talked to him and I was not in good shape and I didn’t know what was the matter with me but I knew- if you’ve ever been in Einstein the connection to the building it’s very long to walk it’s miles and I was just having an awful time I said to Florence I have to get a wheelchair I don’t think I can make it I should go home. I’ve got to go home I just know I’ve got to go home. It was dinner time anyway and I said to Richard I’ll be back I’ll come see you I’m going to come back after dinner if not I’ll see you in the morning and Florence got a wheelchair and she wheeled me down to where you get a cab and I said you go back to Richard. She said are you sure you’re alright I said I’ll be alright I can get in a cab- I was very wobbly. I was really very wobbly. Well the cab didn’t come, Margot did. Florence called Margot and said I can look after your brother but I cant look after you’re brother and you’re mother too and your mother’s sick. Margot came and got me, we came home and had a little supper and she said mom you’ve got to go- you’ve got to go to the hospital- she had been telling me that for a couple of days and I had been resisting it. You look awful you’ve just got to go and I said okay I’ll go but I have to go to Einstein your not sending me anywhere else I’ve got to be where Richard is. We went up to Einstein and I was being admitted, they had me all full of tubes and Margot got a call Florence was on the phone she said come up Richard’s dying. And she told me and I said you go. She said I don’t- I said go, go right away, go.

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Well get these things out of me I’ve got to go. Well they couldn’t hurry it I guess but they got them out as fast as they could. They did send me up in a wheelchair but he had already died. That was a dreadful day. Those two incidents with Richard were the worst two days of my life. It was horrible- I had pneumonia which should have been recognized but wasn’t- that’s not important at the moment. I was in the hospital for about a week I guess, maybe a little less. I of course recovered. Margot was going to stay with me overnight and I said go home to your family I’m not going to die. She said I don’t like to leave you- she thought I was going to die. I guess one death was enough to handle. I have to tell you this about Margot and her relations with Richard. I came up to see Richard and he had already passed. He couldn’t close his eyelids tightly because he had the short upper eyelids so it always looked like he was peeping. And I said to him you’re peeping at me again and Margot said, “mom, he’s gone” and I said I know that. I’m just talking. So I was sitting there holding his hand and patting him and she’s over across from me and she’s over across from me and she’s starting to cry and she said Richard, Richard you were always a terrible pain a terrible pain but I’m sure going to miss you! Which is true that was the way their relationship was. I would say a different word than he was a pain but I’m not going to do it on the tape. I think you can guess. Those are memorable, very memorable things and I really had not intended to talk about but I’m glad I did because they are important. Richard went out in a blaze of glory. Happiness I should say. His birthday was April the 7th and I always had a big party for him. He selected the guests, he selected the menu and it was a big thing here at the Watermark special dining room and big goings on with wine on the table. We had a woman that he liked that would come and sing and people would dance to her singing. So it was a big deal but they wanted to go to Disney World and Florence was able to get a good deal for them to go and it would be over his birthday and I said that’s alright we can have his birthday when he comes back. So he went to Disney World he had a wonderful time. He didn’t always talk a lot about trips but that one he just bubbled when he came home he talked about it and he had a whole album full of pictures and mini-mouse had kissed him on his birthday and all this it was wonderful he had such a good time. It was Florence and her husband and then there was the young woman who Richard knew who had been in his class or something and she went along too. So they had quite a group. He had a great time and so that was a big deal and then immediately following that I had his party which was as usual a great success and he had a good time and he danced and he sang he sang with Karen. I’ll try to remember the name of the song I know it- well I’ve got a copy of it here. So he had been singing with her I have a picture of him singing with her it’s very cute. And then the next Sunday was mother’s day and he was up here with me and the next Sunday he died. Just like that 1, 2, 3. So he had a great time and it was good for all of us really because we could remember him happy you know not just think of him in a hospital bed dying. That was a terrible shock because I didn’t think he was dying I didn’t think he was going to die. I knew that Richard could die at any time that he was a risk always but somehow I just wasn’t prepared for that one. It was tough.

Lisa: (02:36:54:19)

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Lisa: What did Richard mean to you?

Eleanor: (02:36:57:28) What did he mean to me? What do your sons mean to you? He meant everything to me so did Margot. I mean they’re my children, yea. Because of his need he probably was closer in many ways than Margot but there ways that she was close that he never could be. We’ve shared things you know mother and daughter things. Her son calls them [?]. We said throw the men out and we’d have an overnight together. Because of his great need I guess in some ways he was more like a baby but he wasn’t a baby, he was a man. And he let you know it. He listened to the television and the radio and he knew what was going on. He wasn’t a baby. He would let people know.

Lisa: (02:38:12:15)

Lisa: What’s been the hardest part for you about losing Richard?

Eleanor: (02:38:21:09) What was the hardest part about losing him? I don’t know that there’s a hardest part the whole thing was hard. The hardest part is to let him go. I miss him all the time but I have let him go pretty much- I mean I’m not overwhelmed it. I was for maybe a week and I knew that that wasn’t right I did a lot of praying and I had a lot of help from my church. I saw him once and I’m really not at all sure that I didn’t have it in my heart that he was there or whether he really was. It doesn’t matter, it doesn’t matter whether it was real or not real. It was the night he died, and it was like he said goodbye. There was no words. He was just there smiling and that was all and then he just disappeared and I think a lot of it was in my head, I don’t know. I’d like to think it was real and I remember it but I don’t dwell on it at all, I don’t allow myself to do that. You can’t keep someone all the time. I had to let him go and it wasn’t easy.

Lisa: (02:40:39:04) How do you think that Richard would like to be remembered or how would you like people to remember Richard?

Eleanor: (02:40:46:24) I would like him to be remembered as he was and it came very clear in the services. We had two services for Richard, one at the church and my grandson spoke and John spoke and so it was very nice and I insisted that it not be maudlin and I insisted that it had to be like Richard I told the minister I want you to play ‘Jesus Loves Me’ and some of those songs that Richard loved and sang and she did and then there’s one that ‘Jesus Christ is Risen Today’ he loved that he loved the hallelujah’s. So two of the women who were members of the church and worked with him, Kathleen Sheraton and Diane Paulk, both were in the quire so they sang that hymn for him and it was different than many memorial services in the church even though all the right things were there. And then I had a service for him here, a memorial for any people here who wanted to come and for the people where he worked. And they brought up two bus loads. Two little buses, vans and we had Jim Conroy spoke and did a magic trick for Richard. Several people spoke to him and the girl who had been with him in Florida got up and cried and spoke and that was good because she needed to and

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it was happy and people were remembering things about Richard. Funny things, too, and that’s the way I like him to be remembered. As he was, as he was. A character.

Lisa: (02:43:42:01) So we were asking about any hopes and dreams for Richard. Were they realized?

Eleanor: (02:43:47:04) I didn’t have hopes and dreams for Richard I don’t think. Not like you would for like I did for Margot going to college, getting married, all that. I knew that that was not going to happen. I never said never but I knew it wasn’t going to happen. All you have to do is say it’ll never happen and it happens. Those were small things. I think that the thing I wanted most was for him to be- have a home of his own which he did wind up having. It wasn’t in his name- it was mine but he lived there I didn’t and he lived there with Florence. He knew that when Florence first started with him, well he knew from others too, that it was his apartment. It was his, and whoever lived there with him was up to him. And if he didn’t like them, they didn’t stay. So he used to fire Florence about every two weeks and then he would tell her he didn’t really mean it. So I always wanted for him to have a home like that, that he would have someone with him I knew it wasn’t going to be me all the time and it shouldn’t have been I was getting older and he needed someone younger that was more his age or near, you know she was probably pretty close to his age. And that was one of the dreams I had that he would- not an institution not ever an institution, not another private facility, none of that. A free-standing, life-sharing kind of place. And we were able to make it. I’m a little bit proud of that and that’s another story that we were able to do that and it worked very well for Richard. I knew that he wasn’t going to get married I wanted him to have more friends than he had in the neighborhood, but there weren’t. They just weren’t there. He had friends where he worked and they were good friends, they came to his funeral. I see them and they make a big fuss over me if I go in because they know you know I’m with Richard. No you learn very quickly that isn’t going to happen so you try and figure what you can do to make their lives best. I wanted him to be able to go to school. He did go to school he was in school until he was 21 and then he went to a shelter to work shop. That could’ve been better but it was okay it was something to do during the day and he made friends there. I think that’s it. We had one other bad thing with Richard. Do you want to hear that?

Lisa: (02:46:55:13) If you’re comfortable sharing it.

Eleanor: (02:46:57:03) Yeah I just thought about it because of the workshop. We lived in a place called Cheltenham terrace on route 73 I guess it is. And I’m not sure whether its in Philadelphia or if its in Montgomery County its on the line there anyway and we had to throw our trash down a chute and there was a big thing at the bottom that it went into and was carried away in the trash truck it wasn’t an incinerator it was a trash wagon and that was one of his jobs when he came home from the workshop; he would empty the trash and then he would go down to the laundry room where there was a coca-cola machine and get himself a coke and come back home. And that was a routine. It worked fine except occasionally people threw cigarette ashtrays down the chute and

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then there would be a fire. Anyway one day there was a fire. Richard had been in the basement getting his coke. He came up and we took the dog and we were going- we went out. I wanted to go back in when I left my purse in there and Richard wouldn’t let me. So we stayed outside and the fireman came and the fire was in the basement in our- it started an air locker according to the fire marshal. Air locker was the furthest away from the door you could possibly get in the corner. Anybody could have been back there doing anything and nobody would see them. Of course Richard had been in the laundry room so all the ladies in the laundry room said he was downstairs. He did it. You know we moved - we had to move out because we couldn’t live in our apartment the flames came up - we lived on the first floor and the flames came up through the sur-bases and it burned a couple things not too badly but it knocked things over, books were ruined. The fireman went in and locked everything and of course they sprayed water on everything. So we had to move out we moved up to Howard Johnson’s for a while and one day there was a knock on my door and the fire marshal is there. Well I knew him because every time there was a fire in the basement he was always there. And Richard knew him too and he came in and he said did it ever occur to you that Richard started the fire and I said of course not. Well he went through a lot of things- parents are always the last to know and then these terrible things can happen and oh its awful and he wanted to see Richard. Richard was down getting an ice cream cone in that part of Howard Johnson’s and I said no you can’t see him unless my husband’s here. So he made an appointment to come back the next day. So Phil was there and he came and I didn’t say anything to Richard. We didn’t say anything to Richard about it. But the man came in and he started to interview Richard and he said, “where do you keep your matches?” and Richard said I don’t have any matches. He asked him a couple things like that and Richard answered them all. He didn’t do it, he didn’t have anything to do with that. I had said I didn’t think he did he doesn’t even like to blow out the match when his father lights his cigar. He doesn’t like flame. He left and Richard went out to the- Phil went out to the car with him and when he came back I said weren’t you proud of Richard to handle himself so well? I didn’t say don’t say this don’t say that, we didn’t say anything to him. And Phil said well you may have thought so but the fire marshal said well it’s obvious that he did it. And he said don’t worry- he said, “I won’t press charges we’ll just have to send him to Pennhurst and tell them he’s a fire bug.” Well….and Phil said to him go ahead if you want to but you haven’t got a case and you know it. Well of course we contacted our lawyer right away and they had a fire the next day in the apartment building and then they had another one and the second one on a ladies door was written in lipstick “catch me if you can.” So it’s pretty obvious to us that Richard was- we never thought he was anyway. But that was one of the most horrible- you know- some pretty horrible experiences and you know you tend to forget them and write them off unless some other thing reminds you and of course we never heard anymore from the fire marshal but- oh, yes we did. He came to the workshop and he wanted to interview Richard. He brought the janitor from our apartment with him because the janitor said he had seen Richard in the area. He said he’d seen him throwing matches down the stairwell; I don’t believe that. So he brought him with him and he wanted to see Richard and Mr. [Rudolph?] who’s the superintendent or

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whatever- the boss called me and I said no, he cannot see Richard unless one of us are there. No he cannot see Richard because Richard will just say ‘hello! Mr……’,’how are you?’ and he’ll read anything. No he cannot see him unless we are there. So that was that except Richard did come downstairs while they were there, he was working on the second floor it was an old house that they had. He came down the stairs and he said, “hello! Mr….” [laughing]. But apparently the other man was outside and so he didn’t. Nothing more happened from that and they had all these other fires.

Lisa: (02:53:23:16) But what did it do, Eleanor, to you and your husband for a second time to be threatened with the institutionalization of your child?

Eleanor: (02:53:33:24) Oh well it just made us more certain that he wasn’t going to. We had hired a lawyer, we never had to use him but we wouldn’t gone to all extremes. Sure, it was dreadful. Dreadful. Kept awake a few nights, of course- dreadful. But Richard was with us and we didn’t want to say things in front of him you know so. Richard was living with us at the time.

Lisa: (02:54:03:04) Eleanor so much of your life you, obviously, devoted to both of your children but as you said was devoted to taking care of Richard’s particular needs. How are you different now that Richard is no longer here- how are you a different person?

Eleanor: (02:54:21:25) You’d have to ask somebody else that. Well I’m older, you know, and I’m here. I’ve moved into a smaller apartment, those things all effect me. I just think I’m at a different stage at my life. I guess in a way I’m freer but I’m not because I’m older. [Laughing] I can’t do much anyway. I was able to do pretty nearly anything I wanted to do with Richard because I always had help and I made sure that I was the person and I wasn’t just Richard’s mother. You know I went all over the world mostly on account of him, but it wasn’t directly about him. I don’t think I’m very different but ask Margot.

Lisa: (02:55:20:14) One last question, do you have any traditions- traditions that allow you to honor Richard and Richard’s memory?

Eleanor: (02:55:28:24) No not really. I’m thinking of one before Richard. At the ARC in Philadelphia they have given me some honors but they are now talking about naming the- getting a new creative workshop or something where Richard- the thing he was working with art and music and dance and stuff. And they said how would I feel having it named after Richard. And I said well that would be wonderful and they said well maybe it can be named after both of you and I said well I think it’d be nice if it was named after Richard. So I don’t know if anything will come of that. I would like that- I would like that. Otherwise, I really don’t know what to do about it. I have a scholarship for my husband but that’s different.

Chapter 3: Daughter Margot

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Lisa: (02:56:54:04) Eleanor I wanted to ask you, we’ve talked a lot about your son Richard and I wanted to ask you a little bit your daughter, Margot. And maybe you could describe some of your earlier memories of your daughter for us.

Eleanor: (02:57:04:26) I would be glad to talk to you about Margot and my early memories. Margot, as I mentioned earlier, the first time I saw her was in the juvenile court and she was holding court. She was always a bouncy girl. I remember bringing her home and I was changing her and I had a bassinette which I used to bathe Richard in [?] an aluminum top. She was- I had her on the top and she was kicking her heels, as babies do, boom boom boom boom boom. And Phil came in and he loved he always said the first time he saw her she was kicking up her heels and he sang to her. Because she was so pretty “little girl you’re the one girl for me.” I used to sing that to her and he did too occasionally. She gets sort of embarrassed about it now. Maybe she wouldn’t now that she’s a grandmother. She was just a delight, she was fun, she was interested in learning- she was like grease lightning, I couldn’t leave her outside for a second she would be off- she’d go visiting. I’m talking very early and I had a chaise on the front porch and we had a yard about the size of a postage stamp in front of it and then the street. It was court street which was a fairly busy street in Doylestown. Two lanes, not a big highway, but busy, and I had a playpen, Richard was still in the playpen, now she was probably- she was probably close to a year old at that point. To keep her safe I had a harness on her and a big chain that I used for the dog in the backyard I put on her and it was on the post of the porch but it was long enough that she could sit there very happily, reading, looking at her books, leaning back; she loved the shade- with a big chain on her. I had a picture of it and her daughter saw it not long ago and she said- well several years ago, of course- may ten, and she said you had my mother chained, how could you do that. And I said wait until you have some kids. And of course, she had Brendan first and he was grease lightning- he had a harness and a leash. You couldn’t even get him out of the car without hitching it. I’ve said just like his grandmother, she was very active. But she didn’t mind being confined, because she knew she was going to get out you know we were going to go someplace that I had to do something and then all three of us were going to go out somewhere, around the town. And she was an animal lover we always had a dog or a car or both. Usually not a cat by itself we usually had a dog by itself and we had a dachshund and he was quite a character. He used to climb out- the house we lived in was a Victorian twin in Doylestown and it had been made into two apartments when we bought it and there was someone living on the first floor so we let them stay there. That helped us pay some of our bills and we lived on the second and third floor. So, the room that we had this kind of a thing back here, a daybed, we had there so we could use it for extra guests to sleep in and it was right by a window and the window was usually open and the dog would go out and run up and down the roof of the porch and bark at the kids when they’re coming home from school. They’d say, “look at that dog!” and Margot loved that, she would get him in. She always- when we moved to the country in Penn’s park and had a farm and a nice yard so there animals- rabbits and squirrels and groundhogs and so-forth around and we had a dog and a cat. But Margot always, and I’ve got a

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picture of her sitting with an injured rabbit. I don’t know whether the cat or one of the dogs got the rabbit and Margot caught it before it got away or died I guess. And she had it in a box and she was sitting with it- with the rabbit in the box in her lap looking at it and hoping it was going to live- of course it didn’t. She always loved animals. We had a dilapidated garage it was sort of one-sided, sort of leaned and just before we moved in there was a very big storm and a willow tree fell on it. We were going to clean it up Margot and I so we- it had a dirt floor and we didn’t put the car in there we’ve had lawnmowers and stuff like that.

Eleanor: (03:03:13:16) It didn’t fall down. We decided we were going to clean- straighten it up. It tar paper on top of the dirt so we moved the [?] out and I picked up one of the tar paper and it was all these tracks of where the mice had lived, where they ran up and down and there was a mommy mouse with babies hanging on her. Margot wanted to get her and save her and I said let her alone she’ll find a place to go. We put the tar paper back on it was amazing they had practically a village under there. And that’s the kind of girl Margot- she always was after the animals she loved them.

Lisa (03:04:25:02): What you’re describing she sounds like a naturally compassionate person do you think that is who Margot is naturally or do you think or do you think that having a brother with a disability-

Eleanor: (03:04:39:00) Oh I’d love to give Richard credit but I don’t think so. No I think that’s Margot I think because it was always like that. She was like that with her dolls. She had a raggedy Anne she called Bocky I don’t know where that came from Bocky- we were on a summer vacation we had a cottage for a week or two off some lake and we went into town to get her a new pair of shoes- sneakers or something and she had always took Bocky she must have been about 3 years old. We got in the store and we got her shoes and we came out- she forgot Bocky. Well we had to go right back. We had Richard in a go kart and back we went and nowhere was Bocky. Someone liked it better than Margot I don’t know. That was a tragedy of all I mean that was a gigantic tragedy in her life. I bought her a new one- wouldn’t do it wasn’t Bocky. She mourned her she really did mourn that doll and there was nothing I could do about it but just keep giving her some things to do. She loved to swim. We lived in Doylestown when I first got them and they were little and Doylestown had a- probably still does- a pool that belongs to the township and it was donated by a man who had a lot of money and he donated the pool to- build it and that was so the children could swim. I don’t know it was quite cheap- parents had to pay more but the children could go in the daytime and take lessons. The swimming lessons were free but I think you had to be a member or something. I had them in little jump seats that I could keep in the car, they slid under the back of the seat. So I could pick them up and carry them and I could just sit them down the side of the pool and Richard is safe- I’d let Margot go in and she was- well she wanted to go to the deep end right away and you weren’t allowed to go to the deep end until you passed certain tests. So she stayed in the low end but I never had to worry- she was just barely walking and I would take her and hold her and you know and when I

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let her down she wanted to right back and swim. And when she was older and I got her some lessons she was right on the diving board.

Lisa: (03:08:34:27) Eleanor people talk a lot about the special relationships between fathers and daughters. Can you tell us a little bit about Margot and her dad?

Eleanor: (03:08:41:20) He always called her ‘baby’. Princess too, princess. I think they had a wonderful relationship he was very proud of her as a person and he was proud of what she was doing with herself and she was a stay at home mom for a long time and anxious to get moving and he was backing her in that and he was pleased when she- well he wasn’t pleased when she left college. She went to Michigan State and we moved back to Pennsylvania so she matriculated as a resident and she went off to college with a great big stuffed donkey. It was right near one of the big political conventions and they were selling elephants and donkeys on the street. Grandmom bought them each one. Margot got the donkey, Richard got the elephant and Margot went off to college with this animal under her and she kept it I guess while she was there. Her junior year life changed for her in many ways and she decided she was going to come home. And I went and got her and brought her home I supported her in that- Phil agreed that it was a good thing to do. So she took six months off and finally went back and finished her junior year and then she had met John and she wanted to get married and so Phil said to John that it was okay- we would help them if they needed help but he wanted Margot to finish and he promised that someday Margot would finish she didn’t want to finish right then. She got pregnant right away and had Michael but while Michael was a baby she managed to get some help and she worked in a bank there as a teller and she did that in the summer’s when she’d come home but she still had not finished. And then Stephen came along and so she was extra busy and she tried to work in some courses and things on the side at night and then Kate came and that made it even more complicated but when Kate started school Margot went back to college in Michigan- Massachusetts. She went to a catholic college I’m trying to remember the name of it- anyway it was a nice college and they told Margot when she started that they- she was going to be full time and they expected her to be full time and they didn’t want any excuses that the baby had a sore throat. You’re supposed to be here so if you have problems with the children you’re either going to have to quit or you’ll have to get help for them and Margot stayed by that and she graduated and we went to graduation- Phil he just had to go to that graduation. He was sitting under trees it was an outdoor graduation- and it was hot and they were mounting the- and Margot had told us that they said she could use her full name if she wanted to on her diploma. Margot…Denise…Elkin…Arden. My dropout girl. I said Phil did you hear that he said of course- I don’t think he hard that at all he was not surprised that she got- I was. I knew she was capable of it but I didn’t think she was working that hard and apparently she was and she graduated with top honors. She had done alright before but you know she wasn’t in any big hurry to get up there at the top as long as she finished it was okay. We never pressed her on that- do what you can do, do your best you know. I always knew she could do better and I guess Phil knew she could too but we didn’t press her at all.

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She showed us what she could do and that was really kind of wonderful. She had three kids in school…and they were school and she was working as a nurse and she continued that.

Lisa: (03:14:10:14) What kind of a mom is Margot?

Eleanor: (03:14:13:05) Oh she’s a good mom, she’s a very good mom. She’s tough she makes them behave like her father and made them be polite- all her children were grown up polite I [?] did that well with mine. In fact yesterday when Brendan was here he held my chair at the dinner table- nobody does that here. He pushed me in and he went around and helped his mother in- I was very proud of him. She teaches them that they’re supposed to respect people not that they don’t have their own problems too but that’s another story that’s their story.

Lisa: (03:14:56:19) What is it about Margot that makes you smile when you think about her?

Eleanor: (03:15:02:05) She’s just the type of person that makes me smile not that I didn’t used to get cross at her sometimes but no she’s a good woman she was a good kid and she’s a good woman. And I’m very proud of her work in hospice. She- well they were still living in Massachusetts- she got a job with the home, not the red cross one of the other ones that does hospice and got a job with them for hospice she did all the things she’s a qualified hospice nurse and an administrator too and so she worked for them that way and John down her and they moved to New Jersey and she found a hospice again and she has been doing it ever since. She was managing one at Methodist hospital for a while they had come to her. She works for Vitas and Vitas was- this is a new section- Methodist hospital has a new section and this was going to be for hospice- people being in patient- not in their homes, there. She had dealt mostly with people in their homes and she liked that. They wanted her to manage it and she didn’t want to do it but she said well I’ll give you two years and then you have to promise me if I want to leave you’ll let me go back to dealing with people. So she managed it for two years and she liked it but Margot’s a perfectionist so she worked ungodly hours because if somebody couldn’t come she did it. She was always having to go do the budget she was always having to go do the payroll at night and that kind of stuff because she was busy and it wasn’t a big one it was a small hospice, it is a small hospice very nice it’s really lovely. And so she finally said, her boss said to her, who is sort of a regional boss, “I don’t think you’re happy” and Margo said “I’m not and my two years are up. I wanna go back to working with patients.” So that’s what she’s doing. That’s how she met this one (points to picture) on the road.

Lisa: (03:17:26:17) Eleanor I want to ask you, and again I know this is hard articulate in a short period of time but what does your daughter mean to you?

Eleanor: (03:17:36:03 ) Everything. Everything- I don’t know what I’d do without Margot. I don’t see her everyday I don’t even talk to her everyday but she’s my life right now- she doesn’t know it I don’t think, but she is. I can’t run hers never could never

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would I wouldn’t even want to. She always in everything I think and do, always. She doesn’t have the best health and I worry about that- I don’t want anything to happen to her. I don’t know what I’d do but I also don’t know what her family would do. She’s the glue in the family and she’s the only one employed at the moment so she she’s supporting five people. That wasn’t what she planned- right now She and John should be enjoying semi-retirement sort of. They’re not that old but wind down when you shouldn’t have to worry too much about kids. She’s 63- will be this year, 63.

Lisa: (03:18:48:03) She doesn’t sound like anyone who would back down from a challenge maybe she got that from her mom?

Eleanor: (03:18:53:23) Well she get’s tired and she goes to bed, she gets tired. We didn’t have seatbelts at first when they were little and we would be coming back from the seashore and she’d be standing up in the front of the car holding onto the dashboard and all of a sudden she would disappear- plunk! Out cold on the floor but she would stay there like that you couldn’t get her to sit down literally until she dropped and she’s the same way now. She’s still working hospice. It’s demanding. She gets home after dinner. She just goes until she can’t go anymore.

Lisa: (03:19:46:19) Is there any particular memory of Margot that you’d like to share with us- a memory that you hold particularly dear?

Eleanor: (03:19:55:20) Well I told you about her graduation- that was pretty wonderful and I think I’ve told you about the animals- I’m trying to remember some of the others. We took a couple trips together, of course, they were wonderful. We left everybody home- I remember one particular we had a wonderful time. I was an officer in the international society for persons with mental handicaps which is like the ARC international. There was a conference in Austria so I said do you want to go with me? Sure and I don’t know whether my sister took one of the kids or both of them- she had two I think at the time I don’t think Kate was onboard yet. Anyway there was arrangements made for the children and we went off together. We stopped in Saltzberg where I had been and she had too. We stopped there again and stayed at the inn where we had always had a good time for and made re-acquaintance with the people the people that ran it and it was a neighborhood inn with a little bar, food, so we stopped there first and we went on to Vienna where the conference was being held. She went to all the things I had to go to I said you don’t have to go you know you can go to something else- no she had to go. We did get to see the Lippizaner Horses; they were either away for the summer- they were in Philadelphia I think, I’m kidding. They were away for summer but we saw some of them that were home were being trained but we did go to all the other stuff and then we had a big- a ball- a closing ball with Vienna waltz and we both had very fancy dresses we had gotten new gowns for the occasion and there were plenty of men that would dance with us so we did the Vienna waltz together and coming home we decided we could walk most of the way. It was hard to get a cab and so-forth and it wasn’t all that far and we decided to walk and I tripped, hit my toe on something that was sticking, went right straight down on my face- that’s the way I

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always go down and of course she rescued me and we continued to walk home and I had black eyes so I wore glasses the rest of the time. We had such a good time and it was a wonderful trip we had a couple trips like that together. Now we try to take, and she does this for me every year, she tries to save some time and we go away together. We’d be not very far and we’d do something special and it’s hard to go away now because she doesn’t have as much time.

Chapter 4: AdvocacyLisa: (04:06:11:00) Eleanor we were talking a lot during our last couple conversations about your family, your childhood, your husband, your children, and today I wanted to talk a little bit about our advocacy work. And so the first question I have for you is when did you first reach out to other parents who had children with disabilities?

Eleanor: (04:06:32:03) Probably when Richard was about two and that would have been right around the time we went to Philadelphia to hear Pearl Buck speak. There were several of us that went so we were already talking to each other but just talking to each other saying oh you’ve got a kid with a problem too but it was at that point that we started to form into a more definite group and as soon as we did that we began to reach for other people because we wanted to help them also because we wanted more children in our little class we were able to start so that they would have friends. One just led to another and we finally had parents from different places around the county- we weren’t a big group but we were probably 20-25 people and we met in each other’s homes. We didn’t have an office or anything like that and we met in each other’s homes- sometimes in the kitchen- we used to laugh about peanut butter sandwiches in the kitchen cause it was very informal and nobody tried to put on a big spread we wanted to talk and see what we could do to move along further. Particularly to try and get the school system involved.

Lisa: (04:08:49:07) You were saying Eleanor that you met in the kitchen very informally in peoples homes can you tell us what types of things parents talked about when you met?

Eleanor: (04:09:01:01) The kinds of things that we talked about, when we got together, were mainly things that we could do for each other. Not necessarily babysitting, nobody wanted to babysit somebody else’s kids, although we did help each other. We tried to find out what each one needed the most and try to work toward that and of course what we needed the most was places for them to be out of the home. We needed our little pre-school that we had. Then we began to work for summer. What are we gonna do all summer and these children need something to do. They’ve been used to each other and we managed to get together some money, we probably had a bake sale, I don’t remember. And we got some help from one of the agencies. One of the… I’m trying to think of one of the names of them. Men’s groups. Men’s groups. They were usually… we would go and give a talk at their lunches. They were always looking for speech makers. And we all learned. First we said “no no no not us” but we learned how to do that. Cause we had a little message and they didn’t want a long speech or

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particularly intellectual one and so it was easy to tell them this was a problem we had in the community and we need help for these children. So they helped us get some camping equipment together and we were able to rent a schoolyard in the country. Which was perfect cause it had a swing and I don’t remember that there was a slide but there were a couple swings and we had some little equipment we took. Of course they all packed their lunches. They all took an extra turn of clothing. We found somebody who was willing to work for us for a very small amount. I mean really, very small. Bless her heart, she was a former teacher, retired, and kind of looking for something to do. She wasn’t real old. She was just retired. That worked great. We did that for several years. We were working to try and get the school board interested.

Lisa: (04:11:47:10) Eleanor you’re group met informally as you said but at one point you became more formal and you became a chapter of the ARC can you tell me a little bit about how your group became part of the ARC?

Eleanor: (04:12:01:19) The group- we were already part of the ARC very early maybe not for a year or two but after we had been to the Pearl Buck speech and met other people from other counties we formed our own group and we had a little constitution and we were part of the putting together of the state association we paid our dues because we charged each other dues so we had a little bit of money and we could pay our dues to the state association. At that time you only needed 10 people to become a chapter. We were interested in the state and we did have somebody on the board at the state association. I don’t remember now. It wasn’t… it was not I. I did not do that until later. But not in the very beginning. I was very busy trying to get things together in the community for Richard and for each other.

Lisa: (04:13:14:06) Eleanor I wonder if you can tell me when you first became aware of the Pennhurst state school?

Eleanor: (04:13:21:14) While we were working together we did meet people in our community who had children at Pennhurst- not at home- we knew about them somehow but it wasn’t easy because people who had children at Pennhurst didn’t talk about it much. They began to shortly after Pearl Buck. The parents who had children there sometimes had difficulty going to see their children because Pennhurst was not exactly around the corner from Philadelphia. Easier for some counties but it isn’t a place where you take the bus and you’re there. We decided we would run a bus every month once a month so that people could go see their children. We had the bus and then I think it was Chester county a couple of parents there were active in getting a picnic together and so we made sandwiches and took them out to the picnic [?] but we couldn’t get in the buildings. They also had a circus come once and our chapter gave money so that they could have a circus so the authorities at Pennhurst began to trust us. We had what they call “Sunshine clubs”. We could write out birthday cards and they would take them and give them to whoever was having a birthday- that kind of thing and Christmas cards and gifts but the gifts were the kind you would give to the marines-

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they had to be unwrapped and unlabeled but they were quite willing to have some toys thanksgiving and I think they began to trust us and we were finally allowed to come in.

Lisa: (04:16:21:25) Eleanor I wonder if you can tell me when you finally did get to visit Pennhurst actually the buildings and not just the grounds can you describe for us what you saw and heard on that first visit?

Eleanor: (04:16:33:15) On my first visit I don’t remember- I really don’t, but generally I remember. The first several visits were guided- they were guided tours, they weren’t just come in and visit. Later, we were freer but the first time we were taken to a ward and later we learned that the ward was all dressed up for us. That really didn’t matter- they could never dress it up enough there were some thing you saw that you didn’t like. We had children come up to us without any pants on. Later when they didn’t always guide us that was when I saw the real bad things like the picture I just showed you of people sitting in a dayroom they’re partly clothes they’re not all clothed and sitting in pools of urine the place was not nice to smell. They would rock, rock back and forth. I guess that was the only joy they had, was rocking. They were not playing with anything they did not have dolls on their beds. Our first trip they were all dressed up with little dolls on the beds later you knew that was just a big phony.

Lisa: (04:18:32:13) Among some of the things you saw at Pennhurst, did you see residents that were required to work on-site at Pennhurst?

Eleanor: (04:18:46:23) The residents of Pennhurst- some were employed there and sometimes they did not receive money. One of the- we had someone on our board who was very interested in making sure they got paid and so there was a push for that at one time and we were successful. There was a farm- a very nice farm, I think it’s a golf course now. There was a farm and were animals to tend and I’m sure some of them enjoyed that- being with the animals. They could pet them, they could talk to them. They were, they were doing something that was productive. They knew that ,their work, even though they weren’t getting paid was appreciated. It was. They had some that worked in the various employee’s homes as housemaids- I don’t know whether they got paid or not. I don’t know. But there were some that were. The superintendent always had a staff of residents working in their home.

Lisa: (04:20:01:06) We there any jobs that’s the residents were required to do that you thought were inappropriate for them?

Eleanor: (04:20:08:02) I can’t say that I knew much about it. I know there was a laundry. I know they worked there and I know it was very hot. I didn’t spend time there. I heard stories about how it was dreadful and they didn’t like to work there but I was never there myself.

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Lisa: (04:20:27:19) One of the things Eleanor that you have mentioned in the past in some of your public speaking is that you did learn that some pharmaceutical companies were actually trying out some of their drugs on residents at Pennhurst maybe without the residents parent’s full understanding. I wonder if you could talk to us a little bit about that?

Eleanor: (04:20:51:18) We did find, well, there were pharmaceutical companies were very involved of course. It was good business and they had a project at one time it was for the measles vaccine and they sent out a slip to parent’s consent that they could test for measles. Whooping cough. Whatever. It wasn’t just for one thing, it wasn’t just for measles. It almost said “etcetera”. When parents signed it they were giving them a blank okay. Some of them wouldn’t sign it and then they got angry at them and some of them were afraid not to sign it (?) bad for their children, and some were very proud to have their children in the project. The (?) vaccine I think was tested in one of the ones around Pittsburgh. They were very proud that their children participated in the research and I guess you have mixed feelings about that. I was appalled. I wouldn’t let them test any kid of mine unless I knew an awful lot about it. They thought that was really wonderful and I guess in a way it was something their children could do that is helping the world but I’m not so sure it should be a child in an institution. I asked one of the doctors we were fighting about it. I said to him, “Would you give this to your son?” He said “of course!” I said, “Well did you?” – “Oh well no.” (Laughs) “Not yet” or something “but I would.” (Laughs) But he didn’t.

Lisa: (04:23:31:22) how did you respond to the conditions at Pennhurst when you would visit? How did you feel when you would leave Pennhurst, seeing the conditions there?

Eleanor: (04:23:45:24) How did I feel when I was at Pennhurst? I felt terrible. I was determined that my son would never be there and he never was.

Lisa: (04:24:41:21) As you know Bill Baldini a local reporter did a very groundbreaking piece called “Suffer the Little Children,” it was aired over July 4th weekend in 1968 and I’m wondering if you saw it when it was televised?

Eleanor: (04:25:20:15) I was on the grounds when Bill Baldini came to Pennhurst. We didn’t meet- he wouldn’t know I was there I wasn’t in the room with him all the time only once or twice. I was with a man who at that time was the president of the Philadelphia group- we were going to a regional meeting of the ARC’s and we went out in the morning because he wanted to see his brother who was a resident there and Bill Baldini was on the grounds. I don’t know how I knew it was Bill Baldini but I did. I don’t think I met him but I was there and saw where he was going and we went on our way. When it came out I said oh that’s Bill Baldini that we saw. I remember his being there and I certainly did watch the program and we were so excited and so pleased that he did that for us it was really a breakthrough because it helped us move along more quickly. We were trying very hard to get some things done there without great success. This

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was a big help for us and it helped for us in the community too because it, people saw and they didn’t want their children to go there.

Lisa: (04:26:55:21) Eleanor what was the reaction, if you know it at all, of parents who did have children in Pennhurst?

Eleanor: (04:27:03:03) To Bill Baldini? I’m not sure what their what they thought, about Bill Baldini but I know that a, I know that some of them, yes I do know. Some of them were very pleased and some of them were saying its not that bad not where my child is. And I remember one woman saying “how can you support that Eleanor, how can you support that?” and I said, I used her name which I won’t now, “come on you know me. Don’t try and tell me that’s a great place.” She had a child there and I said “you know better.” Cause she was saying to me I was a trader and I said, “No. No. You know what it’s like there.” And I know she was trying to get her child out into a better place but… Some of them were really upset about it- they didn’t want people to know it was- and they didn’t want to think it was that bad themselves there was some denial because they were trying their best. It’s very hard- its very hard for those parents and I never liked fighting with them. I just said I can’t fight with them. They were told- the community didn’t do anything for them and the neighbors didn’t do anything for them what are they supposed to do? I remember one mother had a very difficult child at home and I remember once we were talking about what we you need, what do people need. We were trying to convince her to send her kid to camp and she was afraid to let her leave the house. And I said, “what do you need?” and she said “I need help. I just feel like screaming help because that’s what I need, help.” That was one of the best vocalizations I ever heard from a mother and that’s exactly what she did need. “Please,” you know, “help me. Community help me, do something. Don’t just leave me alone.” So they had a tough time. The parents had a very difficult time.

Lisa: (04:29:12:03) Indeed. And then I think around 1970 the Pennsylvania ARC decided that it had to act to close these institutions and find better solutions for their children. Once it was decided by the state ARC that it would work to close institutions can you tell me what would happen next?

Eleanor: (04:29:37:23) Well do you, well when we first, when Dennis Haggerty got us excited at our national convention and Gunnar Dybwad got us excited, we decided we really had to do more than we were doing. We had been trying to making things better and it was a lost cause. We tried to do things like new bed spreads or pictures on the wall but it doesn’t work, it doesn’t- there’s too many people. We certainly saw that clearly that it didn’t work. We knew we had to get help and we asked Dennis to find us a lawyer – did I speak of this before?- and he came up with Tom Gilhool. Tom had three choices for us and I don’t remember them all but I think you have them if you don’t, make sure that Temple gets them. I do not have it in my file or I’d go get it for you. There were three choices and one of them was to go for the right of education and do it on Brown because we can win. And at first we said education we want to get people out of the institution. He said that’s the first place to try and he was right. So that’s the

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course we took we went for the right of education and as it turned out the first ones that went out were from the institution because they already had some classes and they were included too and they were glad to, so they put them all on the bus and sent them to the public school. Public school was a little shocked, I think, I suspect. (laughs) But it worked. It worked. I always called that our foot out the door. They were the first ones that went out and bit by bit schools picked it up of course.

Lisa: (04:31:38:29) Eleanor you actually worked at the public interest law center when Tom Gilhool was preparing this landmark case - eventually what became the PARC Consent Decree. What was that time like? Can you recall?

Eleanor: (04:31:53:20) Well we were working on the right to education and I got a job with Tom Gilhool. I'm not sure if it was the first lawsuit or the second. I would have to look it up because I was involved with them of course, on all of them. What is was like working at the public interest law center? It was fascinating, exciting, difficult, but there was so much that needed to be done it was hard not to have some successes and of course because we had an excellent lawyer we had a lot of successes through the law but we were also picking them up in the school systems before they were even told “you gotta do it.” They were doing some of it on their own. Which helped a great deal. It was very interesting to work there and work on the lawsuit. We some, we had a restaurant across the street where we’d go for lunch. We called it the Boardroom. It may have really become the name, I’m not sure. But we would come back and if somebody couldn’t come we’d ask, “was it a 2 or 3 napkin lunch?” That meant how many notes you wrote on the napkin while you were having lunch. It was that kind of a crazy time it was exciting it was fun it was very hard work and it was a great part of my life. My husband said it made me ten years younger. I think it probably did. Because I was probably the oldest one in the office. I hadn’t retired yet. I was 60 when I was there.

Lisa: (04:33:41:25) Eleanor were you in the court room for the proceedings around the Park Consent Decree? Can you describe a little bit about the atmosphere when the ruling came down?

Eleanor: (04:33:58:02) Well, I was of course in the courtroom while this was going on and very often I was a gopher they’d say, “ take this and get it to the Xerox place and get 6 copies made.” So I would go to the nearest place. It was exciting to be there. And some very wonderful testimony of course and we were all listening intently and smiling being happy when something happened that was fun which it did. Some of the testimony if you get to read it is actually very interesting. I remember one woman saying, “ and my Johnny came to see me, “ she was in a retirement place such as I live in here up in the Northeast, “and he came out and he took me to lunch. My Johnny took me to lunch! Imagine that! He paid the check!” Because he was now living in the community and she was so thrilled. So cute about it, “he took me to lunch.”

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Lisa: (04:35:12:26) Eleanor, so all of… you were so connected with parents and you just a few minutes ago described a parent very eloquently saying she just needed help. You know and all of the frustrations parents felt because of the lack of support you know, and the difficulties of keeping children at home. So when the PARC Consent Decree was announced and years later and when Pennhurst closed, did you get a sense that all parents were happy about the trend of closing institutions and children moving to the community?

Eleanor: (04:35:51:06) The PARC Decree was fascinating to work on. We were thrilled with it. But not all parents were happy. No. They had been told that their children could not succeed. They had been told that they shouldn’t be in the community. That they weren’t going to be good for the other people in their family. And they were afraid. And they were afraid to bring them out. And that’s of course from the Pennhurst people coming out and to live in the community. But people in the community with their children going to school that hadn’t been to school were just as worried. The children had not been in school. Now some of us had been lucky enough, as we were in Doylestown, that we had a small class in the Doylestown public school before the Consent Decree and it was called permissive. It wasn’t obligatory, it was permissive. We had managed to get something through on regulations in Harrisburg that permitted the school board to do that and they got paid. Otherwise they wouldn’t have done it with no pay. No tickie no shirtie. Don’t say that. But you get the idea. And so we had done it. But for the other ones that were starting, they were sure that the kids in the public school were gonna perhaps fight them or not wasn't them there or the teachers weren’t going to be nice to them. So it was a difficult time for parents. Strange enough it was always the parents that would be our first stumbling block at every new thing we tried. It was always the parents because they were afraid. They are so afraid something is going to happen to their children is gonna be bad when what is happening isn’t so good. I mean I’m talking about even the ones with kids at home. You know it’s a burden on Mom and she’s yelling at them probably. She’s saying, “help, help please help!” The woman who said that to me was very worried about sending her child to summer camp. Even though we assured her that it was okay and there were plenty of people. She finally did send her and it was very successful. You know for a weekend or whatever. A very short, short time to try it an a little more later. The parents were worried and very often fought us.

Lisa: (04:38:33:01) What did you say to parents that fought you Eleanor?

Eleanor: (04:38:38:01) Well it’s very hard you know, what you say is, “you don’t understand, you really don’t understand Susie. This is going to be okay. Look at Richard. He’s doing alright. Or look at Annie over here. She’s doing fine and she was never in school.” “Well they’re different.” And probably they were. They were all very different actually. Cause the group, the first class, they were all different ages, all colors, all degrees of retardation. They were different. There were 10 kids and they were just as different as 10 kids could possibly be. What we could say was, “Give it a try. Nobody’s gonna hurt, you can go the first day if you want to.” And uh, they gradually, they

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gradually joined and got in with the group but it took awhile. It took awhile. With each new thing. And getting into the community was even worse. That was sheer terror. Especially if they were gonna bring their child home from the institution into the community. Ohhh that was terror for them. It really was, they were very very frightened. They were sure there were going to be nothing, there kid was going to end up laying on the sidewalk, you know a street person. Which didn’t happen of course. Parents well you’re a parent, and you probably have qualms the first time one of your children asked to do something that’s different. Ooooo help!

Lisa: (04:40:24:17) I had that this weekend, yes. Eleanor, after PARC consent and school were slowly opening, eventually Pennhurst was closed, and people were moving into the community…

Eleanor : See my brick?

Lisa: Pennhurst brick?

Eleanor: Yes! That’s Pennhurst.

Lisa: Tell me about your brick.

Eleanor: (04:40:40:11) That brick was given to me just recently. When Pennhurst closed I said I wanted to throw the first rock. And they wouldn’t let me. And then I said I want a brick. Well I want a brick. And they wouldn’t let me. When they were taking some of the buildings down. And a friend of mine came to visit me just a few months ago and he said, “I have a present for you.” And that's what he gave me. He had been out there. Jim Conroy is very active. He’s in our group at Temple. He’s very active with the group’s that’s trying to make a museum and an alliance of memories of Pennhurst and he had been out there and he brought this to me. That’s my great trophy.

Lisa: (04:41:30:24) If that brick could talk.

Eleanor: Pardon?

Lisa: If that brick could talk.

Eleanor : Yes I wish it could! It’s got dirt on it. It’s not been scrubbed off clean. Never will be. I’m gonna keep it just like that.

Lisa: (04:41:44:20) So after this movement, then community living started you could become perhaps less involved as an advocate for others and really focused your attention to your family and your child with a disabilities needs but instead it seemed like you became more active and I’m wondering if you can tell me a little bit about your work with the ARC, the positions that you held there?

Eleanor: (04:42:13:15) As things were evolving- it was quite a number of years involved you know, it didn’t just happen- all the time Richard was in programs and I was very engaged with those but I was engaged with getting other things that the ARC wanted to

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do and start which was needed for other people and it was very interesting. I moved from my local to the state association and got to know some things about Harrisburg and talk to , for committee meetings and testified. Which we all did. Most all of us that were willing to testify. Some people were scared I was scared the first time but it was really easy. It was just like here, talking to you now. I did some of that and then I somehow got removed of that because the state was involved with the national and I got involved with the national and I did some things on the national level- education, being sure that other people got information as needed and developing programs with national support. The right to education did become the right to education for all handicap children. That of course came directly from Pennsylvania. Other states became to pick it up and I did some training. Out of it came working with other states exchanging ideas which was very important but began to pick up the interest of self-advocates. That was fun. I enjoyed that part. And out of it, through working with other states came exchanging ideas of course which was very important. They had newspaper and so forth. But they began picking up the interest of self advocates, which weren’t called self advocates then. They were People First. They started in, I believe Seattle, at one of the institutions. They started to get together and I think they had a staff person helping but they had decided they sad, “ We are people first. We don't’ want to be called retarded, we wanna do things for ourselves, we can do things for ourselves,” and they started a group called People First which spread around the country and was being called other things and still exists mainly in small groups around although they meet annually every year. They have a big to do and they are doing more and more by themselves. Without, well maybe they have one or two people sort of as counselors. But they run their own show and it’s wonderful. They are very good.

Lisa: (04:45:43:21) Eleanor why did you continue to advocate for others?

Eleanor: (04:45:53:17) The movement for self-advocacy was very interesting and challenging and I was very happy for them and thrilled because we had been saying you know never say they can’t because they can and we didn’t always believe it because we didn’t always believe it about our own child. Richard will never be able to do so and so and they’d say bite your tongue Eleanor. Because as soon as you really get convinced of that they show you they can. Not always but many times. The movement for self-advocacy became challenging and I got very excited about it and wanted to help them do things and Mark Freedman became a friend of mine and he kept challenging me and pushing me. He was very active much more than I was with the group and he kept saying you’re doing too much let them do it they have to do it themselves. I’d say, “well I don’t know.” They were planning a big meeting or something. He said, “let them do it.” And he finally convinced me- it took a little doing but I finally learned yes they can, you know let them be the leader. When we had the three seminars with the states involved, now I ran the whole thing, they hadn’t got that far yet but they ran their own workshops and they did very good. They even learned about room service. One fellow at a meeting all of a sudden in comes a big tray with all this stuff on it. For him! He had ordered his

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breakfast brought there! Room service. He was signing all these things onto his hotel bill. Well okay. It took a little straightening out. They do learn, yes they do.

Chapter 5: Inspirations and Reflections

Lisa: (04:47:58:21) Eleanor I’m wondering if you could tell us, maybe so many but, who are the people who inspired you in this fight along the way?

Eleanor: (04:48:07:02) Well I was, I was involved in this… I didn’t work alone, never, and that’s obvious when I sat in those board meetings. But there were people who were much higher positions or with greater knowledge than I who were incredibly helpful- I mentioned Pearl Buck a few times but Gunner Dybwad. I have a couple of heroes. Gunner Dibwad is one of my heroes. I don’t think he thought of me as I was so good. I remember saying to him once, “Gunner, now I want you to know I’m not really expecting to be appointed to..” whatever it was “because I’m not bilingual.” He said, “Frankly darling it never occurred to me.” Well oohhhh. Okay, I still loved him. Because he would tell you what it was, the way it was. He would come to us when we were working on the right to education- we’d pick him up at the airport. He would teach his classes all day and he would get in the Allegheny airline shuttle and come to Harrisburg and we’d meet him at the airport. And he had to go to the Spot Restaurant if you’ve ever been in Harrisburg you might know it. It’s a rotten, a rotten diner. He loved it. And it was close to the hotel. So we would get him fed and we would come to work and sometimes we would work until 2 o’clock in the morning and sometimes he would get tired between it and he’d disappear and we’d find him on top of a file cabinet asleep. That sort of thing. Or if we were in the hotel, he would find a spot, we never had our meetings in bedrooms so wherever we were, in a meeting room. He would find a place where he could lay downAnd then he would come back and we would pick up again. He was wonderful and he had so much knowledge and such good feeling of human rights and such good feeling about people with disabilities. My favorite one I may have told you this- he spoke to us at a state convention and there was a chorus from Pennhurst and they sang ‘this is our country’ very well and everybody clapped and cheered and then they went off I mean I think we fed them somewhere but they weren’t really guests all the time. I wish they were. And when he got his chance to speak he said, “if this is their country why don’t you do something about it?” I mean that’s the kind of forth right. And of course, we did. Gunner was wonderful. I had a heroine her name was Elizabeth Boggs and she was our national president but I knew her when she was president of New Jersey [ARC] and we began to work together on some things and then she became national president and she asked me to do some things and I did. She was just so brilliant she was a genius she really a very, very brilliant woman and she could write legislation and did. I remember something happened maybe a year or two ago and Paul Marchand who was still active in the ARC in Washington when we were working this he turned to me and he said Elizabeth where are you? She had been dead for some time but it was something to do with legislation and she would’ve straightened

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it out. The senators respected her she could go to them now this is what you should do now this is the way it should be written and not always was she successful but many many times and we have her to thank for the Americans with Disabilities Act, that kind of thing, and she was very involved in that. She was wonderful and it was a great privilege to know those people and work with them they taught me a great deal, changed my life many times.

Lisa: (04:52:27:08) Eleanor when did you first feel like an advocate?

Eleanor: (04:52:30:09) When did I first feel like an advocate? I never thought about it, I mean I never even knew the word. I guess when we were talking about self-advocates and I remember there was a group of self-advocates at one of those meetings I mentioned with the states and one of them kept saying when am I going to become an advocate? And that was one thing that also helped me believe Mark Freedman. Yes, yes- they can speak for themselves. They can, but not everyone, and even Richard in his limited way could do things and did. He didn’t go and testify before Senate or anything but he went- he liked one of my rug things and it was wrinkly and I said you have to be careful of that now be careful don’t trip. He went to the woman who was second in command here where I lived and said you’ve got to get my mother a new rug she’s going to fall down and by golly I got a new rug. I didn’t ask for it- you see they can speak out to- he didn’t want to fall down but he was putting it all on me.

Lisa: (04:53:51:16) Eleanor this seems like a good time to ask you a little bit about Richard and the quest for sort of quest for living independently and ultimately his living arrangement which became what you’ve referred to and now is a movement on it’s own called “life sharing.”

Eleanor: (04:54:12:14) Richard could do things for himself. A lot of things that he didn’t do. But he kept telling me because he went to a group that met, of self-advocates if you will, in our community and they had a meeting once a month and they lived in a building- house, and old building that had been called Langehurst- it was in Roxborough. It was in the town but the big houses they used to have and that’s where they met- they called themselves the knights of Langehurst. I loved it. And Richard went to the knights and ladies of Langehurst which meant once a month and it was pretty much social but there were those who were more with it and wanted to do something were trying to be self-advocates if you will. When Richard started to tell me because he heard them talking- they wanted to be independent they had all these rights they were listing that they wanted. They wanted to be treated with respect they wanted to be independent, etc. He kept saying I want to be independent- I don’t want to live here anymore I want to be independent. So I said okay well look around. Look around and see what there is- of course there wasn’t much. But he kept after me and he finally did move into a group home which he didn’t really like very much and he kept saying when are you getting me out of here. He was advocating for himself and I thought I had to do something why don’t- what am I going to do for him? I had been in Canada to a meeting and they were working on some- ideas for living and they had one very handicapped woman who I met

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many times she was wheelchair bound and they had a double house- little town house- her son, her brother lived in one side and she lived in the other side and she had a helper but it was her apartment and she could get rid of the helper if she didn’t like that helper she could get a new one and he was there so he was looking in and out but I thought gee that sounds like a great idea. So I got together a couple of my friends and Richard so we started to talk about various things we could do along this line. We looked into a group who’s in Philly who had a senior citizen lady who had young people living with her because she wanted to stay in her house but she couldn’t fix the furnace and she couldn’t- so she would let them stay rent free and they cut the grass and they helped cook the meals and so forth. And that was sort of becoming a movement and well we tried- we looked and realized that we didn’t fit in her group and they didn’t really want us to but we couldn’t really take in a group of young people to live with one person but we worked and worked and we finally came up with the idea of what we called supported living at the time. I remember Nancy always says it sounds like a girdle. We finally came up with the idea of having somebody live with Richard rent free but paying part of the expenses themselves so that there would be a joint thing and Richard would go off to work in the morning and that person would go to work and they’d both be home at night and the person who was living rent free was responsible for seeing that he got fed and doing the shopping and they could do it together and hopefully teaching him to do the laundry. I’m not sure how much he succeeded in that but helping him to be more independent and I was about to move here and Phil and I said well why don’t we move him in here and we’ll see if we can get somebody to support the place. We tried to give it to the church and we almost had them willing to take it with Richard having life tenancy but they got cold feet at the last minute and said that they didn’t want to be that involved and turned us down. So I said to Phil well we’re going to do it. He kept saying I’m not going to be here very long and I said well I’m doing it now so I was the nasty land lady and we were looking for somebody and I was at a meeting in Philadelphia. Like they have now my city, my place they called it something else at the time and the chairman asked me to hand out some things about legislation so I said sure. So I’m handing these out up and down the aisle and I come to Patrick McBriarty who was the man who was in charge when Richard had moved into the group home and I said I have some ideas about something for Richard- you might know somebody who would be interested, can I talk to you afterward he said sure. Well it turned out he had to go somewhere and he left a message with his phone number to call him. So I called him and I told him what we were thinking about- I thought maybe you’d know somebody who might be interested in moving in with Richard on this basis. He said I do, me. Which was wonderful. I love the name Patrick McBriarty isn’t that a great name? And Patrick moved in with him- actually Richard was living at the place where he kept saying when are you going to get me out of here and they all came the day he moved in. Everybody came that was on that staff- they wanted to see where I lived and what it was like because I was out by then. I wasn’t there but I had left them furniture so it was furnished and Patrick- we thought well we’ve got to clean up this place before he moves in but we didn’t have to because Patrick and his family had already done it. The place was spotless and we had a support group of about I guess

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five or six people who were always there. We had no bi-laws, no IEP’s, no PPP’s or anything and we didn’t have any officers we didn’t take minutes- too bad we probably should have but we didn’t and whenever one of us thought we needed to talk about something whoever thought about it had it at their home and had to be the leader. And it worked just fine but then it became- we really needed another person in there with Richard and we found a fellow we thought was going to be just wonderful and he and Richard had been friends in the neighborhood. He was in a group home in our neighborhood- actually across the street and it was all going to work just fine except he got a girlfriend and that did not work well. He got in trouble with the girl- he lost his job and it just didn’t work and the police were after him once because he was making too much noise about something- they were having a fight and he had nobody to tell him- he was in a very good agency but they didn’t realize all that was going on until the police were coming because he had been yelling at her on the bus and so the group decided that he couldn’t move in with Richard. I was the only one that voted and said he could because I liked him. I had him at the shore for a week and they were fine they were wonderful together. He used to come in to see me on his way home from work- he worked at a friendly’s and they said you know because we can’t take the chance of having police coming in so we didn’t have him and we found another person who lived with Richard for a couple of years I guess. It worked just fine but then Richard became dependent on insulin and we had to do something about that. So we then asked for help from an agency because we had to have someone certified to give the insulin. Patrick had left he had been there a couple years, got married, stayed with us I guess almost a whole year after he was married but then it was time for them to have their own family which they did and we got someone else and we asked Kencrest to help us and there’s a lot of things in between that aren’t really that important but that’s when Florence came to us. She was working for the ARC and doing ceramics and that sort of thing and someone there I had asked them to look around for somebody when I had to find somebody that would take the training and so forth. The man who was living with Richard at that time didn’t want any part of it he was scared to death of the needle. And that’s okay I understand that. So he wanted to leave and we looked around and we found Florence who the people there said you take it Florence you take it- which she did and of course she was with Richard until he died. She was wonderful- she gave him unconditional love no question about it and he was very difficult at time- very, very difficult. Until we had a psychiatrist that gave us a new pill- it wasn’t new it was new to us- and it was a pill that they used for epilepsy but it was a very small dose and he was a different person because he would have these violent outbreaks and often it was because his blood sugar was low but it also became a way of expressing himself. If he didn’t like something he’d just hit out, you know you can’t get along that way. He didn’t do it much at work- it was just us- particularly me after all I was an authority figure so knock her down you know. Anyway he’d kiss my arm up and down and say he’s sorry that he’d never do it again. And he was- with that pill he was a different person- just charming and we had no trouble after that.

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Lisa: (05:06:19:11) Eleanor you were describing Richard’s life sharing which sounds so unique and I think at that time it was relatively unique. Did life sharing become a model that others adopted?

Eleanor: (05:06:30:18) When we were figuring out the life sharing there really wasn’t anything except the Canadian. Well I did say we contacted a couple places like the seniors place and didn’t find that they were suitable and I don’t know how or when I guess mainly after we got in with Kencrest when Kencrest started to work with us they had differences and they had a department- I don’t remember what it was called but they now have one and it is life sharing but it was entirely different- ours is what we called supported living but it doesn’t matter what you call it it’s still life sharing but it’s a different kind there’s is families who are willing to take people to live with them and I know when I was asking them to help me find someone for Richard and they said well why don’t you go into this program he can be with a family I said he has a family. He doesn’t need to be- he’s got a family and he could come to live with me but this isn’t an appropriate place for him to be there’s no real companionship. He loves it here- he loved it here he would gladly move in because they made a fuss over him but they wouldn’t have made a fuss if he was here all the time. I don’t think- maybe, maybe they would but it wasn’t really inappropriate place for him to be and Phil was dying and he wasn’t on his death bed but he lived two years after we moved in so things were happening that made it not the best place for a young man to be and so Kencrest had this one with families which they still have and it’s very successful but people do get kicked out so family says no more can’t stand that person another day and they have to scramble around- its different. It’s a different kind of- it’s good, and some works perfectly just perfectly and I know from Florence was working with Kencrest later when she was with me she had left the ARC and she went to work for Kencrest and she had several clients- Richard was one of them but she also lived with Richard so it was a different- the other ones they were with families and some worked very well and some didn’t she was always saying oh my what am I going to do about Carol as the second ones who says they wont keep her anymore. So they came with different thoughts I think. Well they did have good support Kencrest has a wonderful staff- it’s really a great agency and they were great for us I think I liked ours better. But not everybody can find a place to have them live, you know. I didn’t have terribly high expenses there and I could manage them- Richard did pay rent now he could only do 220 a month what he was allowed to pay but he did- I made him pay rent because he had to know if something happened to me he was going to have to pay rent he couldn’t just have a free ride in his life. He didn’t care about that he didn’t wanted to get paid when he did something. He’d say pay me, pay me. Didn’t matter what it was- but he knew about that from the workshop and then when he moved into the PDDC he didn’t go into the workshop because he really had had enough of workshop and so he was in the cultural center where they did nice things. He didn’t get paid- he didn’t get paid but that was a blow but he loved it there so that was okay.

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Lisa: (05:11:05:25) Eleanor I’m going to ask if we can switch tracks a little bit we’ve talked about your work and we’ve talked a lot about your family and I wonder if we can spend the last little bit of our interview talking about you personally and you can tell me if anything is too personal.

Eleanor: Okay

Lisa: (05:11:27:03) But I’m wondering how you would describe yourself?

Eleanor: (05:11:37:26) Oh I don’t know. I never thought about it I don’t know how to describe myself. I’m an old woman and I try to do the best I can but that’s not describing myself that’s saying what I think. I don’t really know you have to ask somebody else. I don’t know what to say- I can show you a photograph. I’m fussy- I’m fussy about myself. Not so fussy about my fussy about my apartment as you can see I’m a good clutterer. I clutter- I take on more than I should often. I’ve been known to say to Margot I used to do three things at once and I cant anymore and I thought about the other day I was doing four things and I don’t do them well then and I think I’m a person who has difficulty saying no. It’s very hard to say- I’m religious, my church is very important to me- is that what you wanted to know?

Lisa: (05:12:55:11) Whatever you care to share.

Eleanor: (05:12:59:13) I feel very- my church has been wonderful to me and always has been. I always had- we used to move around a lot because of Phil’s work- different colleges- it wasn’t hard to move because we always had each other. We had the church- we always had the college which always the wives club or faculty wives and I had the ARC so I had always these things that touched my life and made me- I guess that’s the best way I can describe myself I mean they were important to me all of them, all of them. But now I guess the church is more important than- it’s always been important but I feel like I’ve been adopted. After Richard died the deacon at our Presbyterian church called me and they said that somebody would be glad to pick me up and bring me to my church if I’d like to come well my church is in Mt. Airy and I’m down here and it’s a 20 dollar cab ride so I didn’t go very often and I went wherever and I said well that would be nice. And then the first thing I know I have two different drivers if one cant come the other picks me up and once in a while neither of them can come and I stay home and our minister said to me well we could get so and so and I said please don’t, but that’s because that’s very important to me and I do a lot of praying- not as much as maybe as I should. I know I could never have gotten through and done what I did with Richard. I never could have without my religion- without god, I could not. I didn’t do it alone- sometimes Elkin and I would say to each other you know, something would happen and we’d say gee and he’d say it’s too much of a coincidence to have been a coincidence. So we- I said yea I always feel there’s a finger on me- not that I always pay attention but there is I believe that. I guess it’s called the holy spirit. If you believe in that sort of thing- I know what I’m talking about but it’s very important in my life. Now I’m not one who is a holy roller or any of that stuff and I don’t tell people

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they’re going to hell because I don’t think they necessarily are. I do believe in forgiveness but it’s important to me. Now that’s the first time I’ve done a lot of expanding on that.

Lisa: (05:16:25:04) How has your life been different then what you imagined it would be?

Eleanor: (05:16:38:22) I don’t know, I’m trying to think what I know what I wanted and that didn’t happen. Any of it. I was gonna be, I was gonna be a nurse. Something like that. And that didn’t work because I never even got to college. So that made a big difference in my thinking forward. But I was very young so oh you know something else will happen. Which of course, it did. But uh, what did I imagine myself to be? Well, I, you change your imaginings as you grow. Of course. So I guess I was gonna say when I married, I thought I would be a very nice wife. I would look nice all the time. I wouldn’t be a mess when he came home to dinner. I usually was. (laughs) But uh and I was gonna have a family. Maybe six or seven kids would be okay. That didn’t happen either. So you change as life evolves and what’s necessary. You change what you think you’re going to be. I certainly never thought I was going to be doing what I’m doing, what I’ve been doing. I thought I would probably work for one of the agencies, charities, Lady Bountiful something like that, you know. With a little basket and a hat. I’m not kidding. But that was you know, taking the turkey at Thanksgiving. I always did volunteer at school for anything like that, anything that was needed to be done. And I guess in high school I belonged to a sorority group. Non academic group. We had to find something to do and somebody in the groups’ father was blind and so we thought we should take care of blind people. So we went down to the Blond Association and we told then here we were, 16 year olds or something, we’re gonna do great charity work for the blind and the lady was very nice. She didn’t laugh at us. She said, “I think what you should do is work for prevention of blindness because they need help and everybody wants to help the blind.” And she sent us… and well “oh okay what’s that?” She sent us over. Well what they wanted at that time they needed paper that would have no glare, special paper. And then they wanted large print on it. Which we had to get a type thing with large print. You didn’t just go buy a book with large print. That was the first time we had every heard of large print. I didn’t really even think about it much even afterwards for a long time. But they needed it. So that’s what we started to do. We had one time when they said, “maybe you would like to do some Braille?” Punching. And that just didn’t work. We were not good at that. But we stayed with the large print and the sight saving things for prevention of blindness. And I think we had a card party or something and raised some money for them. Gradually as we, as our life changed and then the war came along. I don’t know if there is such an agency anymore. I never hear about it so probably not. It’s probably all taken care of by the blind. Yeah but at that time it was a separate little agency. I remember going to, I guess this was right at the beginning of the war. I was learning to knit and they were having a show in Storbages where they have an auditorium. They were having a show of different agencies and what they were doing. I must have been there for prevention blindness, I don’t remember, but I was

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knitting. Terribly! Of course. And people would go by and look, “ahhh, poor thing.” Thought I was a blind person learning to knit! I was just a clumsy person sitting there getting through the day. But I remember that very clearly. I thought how often we think the wrong things about people. You know, think they can’t do something and maybe they aren’t doing it very well but they aren’t blind. That was an interesting… so that , you know. I always had something like that going on. You know I worked with a group, Red Cross when I was in Doylestown. I had a uniform even! I tell you. Big deal. Helping with the Blood Mobiles and that kinda thing. You know I did belong to the chapter and I did have some kind of office I guess. I don’t remember. That gradually petered away too. But that was after the war. That was after the war.

Lisa: Thank you.

Eleanor: (05:22:04:08) The war I worked. I worked in a station hospital in Miami Beach and then I came home and I worked in the intelligence office at Franklin Arsenal until Phil came home and then I quit and became a nice housewife again. So, I don’t know. I guess it was always in my mind that I would be doing something for somebody else. I just had to have something to do because I wasn’t working. I was supposed to be home, being a good wife. I only had one friend who worked for a living. Nobody, nobody did. Nu uh. I got fired when I got married. The electric company fired me because there was not to be two wage earners in a household according to them. I got fired. From my great typist job. (laughs) So things were different. Expectations were different of what people expected of us and what we expected of ourselves. But I knew I had to have something to do. I was not a sit, I was not gonna stay home and play bridge. I like bridge but I like to do that in the evening.

Lisa: (05:23:40:18) Eleanor , I wonder if you could tell us how you would like to be remembered?

Eleanor: (05:23:48:00) How would I like to be remembered? Oh dear. I don't’ know. I don't’ know that I need to be remembered so much as I think it’s important to know… I would want to know that what I’ve been doing would continue. That there would be somebody picking it up. That it wouldn’t, because, in dealing with people one of the things with people with mental handicap bow intellectual disabilities, excuse me, or even not that – if you are not moving forward and staying with it, it dies. And then you have to start all over. If you think because you got education you’re done, you’re not because there will be times when they say, as they are saying right now, I saw it in the paper this morning they are gonna cut special education.

Eleanor: (05:25:07:14) You can never stop. You have to keep your finger in. You have to keep being there and knowing what’s going on. Or somebody has to or they’ll cut the budget. Just as they said in the paper this morning. One of the things they are considering is cutting special ed. Now there will be a great uprising, I’m sure and I’ll probably be part of it but I'm not going to be out carrying a sign. Maybe some parents

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will, and should. If that kinda thing, if they’re going to do that. That’s disgraceful! Oh I'm sure there will be a big uprising. Think they’d do that. But that’s a things they’re gonna cut and special education. You have to stay with it. And that’s what I want to feel good about for the future. That there’s somebody, an agency, there’s people that are going forward. Make it better but also keep a watchful eye. That’s more important to me than you know, having a billboard or- I don’t want a billboard. Poster for the Sunday school picnic. No. Then a memorial I would like it. It would be very nice if there’s a nice memorial that would be lovely but I'm not going to be there. I’m going to be off doing something else. I don’t know what. I don't’ know. Maybe it’s going to be a big nothing. And maybe, I don’t know what it’s going to be. It’s a mystery and it will be a great adventure even if it’s a nothing.

Lisa: (05:27:08:15) What are the most important lessons you’ve learned in your life Eleanor?

Eleanor: Oh dear. I don’t know. That’s a terrible question. Well, I guess to know that I'm not in control of everything. And um, that I have to listen. I have to listen, I had to listen to Richard and I had to listen to other people like him that I worked with. I had to listen to my family. I can’t solve other people’s problems. I can be there for them but I can’t tell them what to do and expect it to happen. I can make suggestions. You can’t control anybody else’s life and sometimes that’s very frustrating. Very frustrating. To let people live their own way. I don’t mean letting them run free, when I’m thinking of children you have to have limits, of course. If you don’t have limits for children you’re up the creek and so are they. That would be terrible. But I ‘m thinking about now and people that I deal with is to, to see the best you can see in other people. I’ve learned that here. There are so many stories and so many things that people have to give if they have a chance. I think my general work has taught that to me that you have to give people the opportunity. You can’t say “Why don’t you just go do it?” It doesn’t work that way. You have to be there for people and try not be to critical. I'm very critical. I’m very critical and I mostly keep it to myself and then I scold myself. But I'm very critical, “ohhh she doesn’t know what she’s doing.” Well maybe she does and maybe she doesn’t but that doesn’t help anybody. I think those are the things life has taught me. That there are other people there besides me. That I'm not the most important one by a long shot. Course my brother and sister usually made me sure I knew that. They work on you with that right away. But I'm thinking more of now. It’s so easy to say “she should be down in the rehab. She shouldn’t be allowed to be up here.” Well why not? What right do I have to decide what’s right for somebody else’s life? But I'm not always that good. Don’t misunderstand me. I go right on saying “I don’t know what she’s doing here.” No. I’m very critical. I try not to be. I think that’s – when I think where I am now, that’s the best I can do.

Lisa: (05:30:48:12) Any regrets Eleanor?

Eleanor: (05:30:50:12) Well I regret that I never got to college. And I think when I see people, all that they do now go to college and do this or that all at the same time, I

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probably could have done better than I did. I did take some courses and I could have done more because my husband was a professor and I could have done it for free or at somewhat of a discount but I’m lazy. I made an excuse for myself that I had a family to take care of. I could only do one course at a time. And then I got tired of the whole thing. Yeah. I’m lazy.

Lisa: Who have been the most important people in your life?

Eleanor: (05:31:49:03) Who are the most important people in my life? Well that’s easy. My parents who were wonderful and if they hadn’t of been my life would have been different. My husband of course. My friend, my lover, my husband. Wonderful guy. We had a great life together. We learned a lot together. Raised our kids. And now my daughter and her family are very important to me. And then I guess we go into things like friends. And I'm not thinking of Gunner and Elizabeth although they were very important in my life they are my hero and heroine. I’ve got a couple of heroines. Eleanor Roosevelt was one of my heroines and Amelia Earhart. And they never even knew me. But I don’t know if I can say that they are the most important people in my life. I think mainly family. Mainly family and a couple very notable friends that I’ll never forget. I will never ever forget.

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