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Eleanor Elkin chapter 5


Chapter 1: Childhood, Marriage and family
Chapter 2: Children and Family Life
Chapter 3: Margot (daughter)
Chapter 4: Advocacy
Chapter 5: Inspirations and Reflections (you are here)

transcript - entire interview

Eleanor Elkin Interview (Word)

transcript - current chapter

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 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 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 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.

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.

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 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 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 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 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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