Chapter 4: Looking for Supports for Daughter, Placement at Elwyn

22:13:24:07 - 22:19:55:10

L. Charlotte, as your daughter Beverly grew older I'm wondering if you continued to look to professionals for more advice or for types of support for her?

C. Yes, yes. Uh she did go to Tom Thumb as I say and she progressed along with that but first grade wasn't all a possibility because it, because it just wasn't. Her level would not let her get into first grade at that time so uh, meanwhile her little brother was growing up and for a while it was wonderful because I think she thought he was some kind of a living doll that she played with all the time and he adored her. And um they played wonderfully together. She was tall, he was little yet and so if he needed anything opened, she'd open the cupboard and they really worked as a team and gave me quite, quite a time but it became obvious that he was getting older and going to probably go into pre-school and uh meanwhile Beverly… I was concerned whether we were doing the right thing or what we were going to do next. And so friends of, an acquaintance of mine, recommended a psychologist and said why don't you go and talk to this gentleman and to tell you the truth I can't remember the man's name this moment but I said okay, fine because my husband and I were kind of… she was his baby and he, you know, and I, meanwhile I'm trying to push her along a little bit, you know and we'd get into some discussions maybe about method and whether I was maybe being a little strict or something like that and uh, Bev, Bev, we never ever argued in front of Beverly because it seemed to disturb her if there was unhappiness or unrest or… and so we, which amuses me now, sort of made a pact that we would never raise our voice or have a fuss in front of her for any reason whatsoever and I kiddingly say sometimes I would say to him "I'll talk to you later!" but we were just not going to upset Beverly and of course the other children occasionally would get upset about something and it would upset her if they seemed to be upset and so forth and so on. So we decided that I would go to this psychologist and talk to him and discuss situations with him and whatever he said we would do because if we were going to spend this money to go and see this professional then what he had to say was going to be it and we both agreed on doing it. And so that's what we did for a while and he said to me, well I said I'm very concerned about what the future holds. And I said, and he said well you've had a good thing going her because your little guy has been quite an entertainer and kept Beverly occupied and so forth but he said he's growing and he's going to go past her, he's going to have his own friends, which is what should be. He's going to go to kindergarten and she'll miss him and he said you should maybe think about placing her in a school where she would get better training and so on and so forth. So this is the first that I had even thought about a placement for Bev but what he said rang true and so my husband and I talked it over and we started to look for a placement and there was no helps in those days financially. Uh, so but as I say my husband, fortunately, had a very good business and I was helping in the business and so we decided after looking around that we would place Beverly in Elwyn Institute as a boarding student. And I think she was about eight and a half years old at the time and it um, it just, for her sake is really what we were thinking of because she needed something. She needed some training of some sort and we just… there wasn't anything available so we just didn't know where to look and Elwyn seemed, at the time, to have a good reputation. And so we looked into that and that is what we decided to do. So we placed her privately there and after she was there about three years, we did get some help from the Department of Public Education for the tuition but um it was something that today would be unheard of. I often think uh, it just would be unheard of but in those days it was the only thing to do if you could afford to do it and a lot of people couldn't afford to do it so we were very fortunate. I always say that was my home at the seashore and my stock portfolio went to Elwyn for a good many years as it was very expensive when we first… and it continued to be even with the help from the Department of Public Instruction. It was not an easy situation financially but we felt it was the best thing for Bev. Whether or not looking back today I feel that way, I don't believe I do but at that time it was the best that we could do.

22:19:55:24 - 22:23:43:14

L. What was that day like, the day that you took her to Elwyn?

C. It was not a happy day. It was not a happy day. No. I think it was… I had to stop and think but I wouldn't have to think too long, I don't think to say it was probably the worst day of my life because it's not easy to take your little girl and give her over. And at the time we were supposedly not to be able to see her for a month. That was their rule however it just so happened that they were having their festival day or something in two weeks and uh, we were allowed to come down for the festival day and take her around the grounds for the day and uh, that was, for me, that was a positive. For my husband, no, that was a rough day; rough day. First of all he was upset about her and then I don't think he had ever been in the company of so many disabled people and he was pretty close to a basket case for most of the day. It was not a good thing but she was at Elwyn for 16 years I think and almost every weekend I went, um, and uh my younger son, Jim, who had pretty much grown up with Beverly, uh until he got to be well into school age, he's go along. And we had some very interesting weekends at Elwyn, our Sundays. They had a uh, little ice cream shop, I guess, a little, I don't know what to call it, a little ice cream shop and Elwyn was a combination of big old buildings and new buildings and in the one older building there was a group of older ladies and right next to the, excuse me, right next to that was um a uh, the unit where Beverly was and they had about six young children there. Beverly was eight and a half, nine years old and I would say these children were all at least that age if not a little younger and some of them were autistic which was a word that back then I had no idea what that meant but uh these ladies, the older ladies all mothered those children so sweetly and knew all the children and it was cute. It was a nice situation and when we would go I found out that if you walk down a couple corridors in the basement and around the corner, they had two or three pool tables so I used to take the ladies and Beverly and Jimmy and we'd go down and not really play pool but play pool. And they, they used to look forward to my coming on Sundays and then Jim and I would take Bev up to the ice cream place and have ice cream and I think we did that almost every week. Other weekends a lot of time too she was able to come home to our place for the weekend so that was good. So we did see a lot of her and I kept on top of everything.

22:23:43:16 - 22:24:51:00

L. Charlotte, I'm wondering you said you and Jim went to see her most Sundays. Did the rest of your family; your husband and your eldest son go with you?

C. No. No, it was mostly Bev and I. My husband would be working most of the time and my older son was at his friends and had things he wanted to do and I didn't really want to interfere in his life. And later on when Jim got older and he had his things that he wanted to do, I couldn't expect him to but he has always been very close to Bev. So I don't know whether those early days made a difference or what. He, for one thing, both my sons are extremely different personalities which I'm sure is not uncommon but uh, my younger son is much more akin to being more sympathetic to Bev's situation. My older son appreciates her situation but it's a little tougher for him to cope with it.

22:24:51:03 - 22:25:15:12

L. I wonder for Beverly when she would come home on weekends to be with your family, whether it was difficult for her to go back to Elwyn?

C. She never, no, she never really seemed to mind going back. I think she just accepted the fact that that was her life and that was it.

22:25:16:13 - 22:28:08:07

L. You had mentioned something that I thought was so interesting. You had said that Elwyn was available to you because you had the funds, at least initially, to pay for it.

C. Right. Correct.

L. For parents who wouldn't have the funds for, for a center like Elwyn, what options were available for them?

C. Very few that I know of. No, I don't know. I don't know what we would have done. I thought we were doing the best thing for Beverly because it was not easy to put her as a boarding student there but in looking back I reaIize that had I had more support in the community, sure she had been able to go to school; public school, she never would have been in a boarding institute; never. But at the time it seemed a wise thing to do because it was one of the only things to do unless you wanted to place a loved one in a state institution and the state institution had such a bad reputation. My husband was in the service as I said in the Army and he was in the service with a group of men from the Phoenixville area and the Royersford area, the Spring City area and he, before, he was either married or you know even gave it a thought, he had been in contact through that with people that had worked at Pennhurst and had terrible stories to tell. So that would have been just unheard of, that we would have ever placed Beverly at Pennhurst so Elwyn seemed like… the fact that we felt so fortunate that financially we were able to do it and I guess we thought, gosh for this much money they must be doing something right and it was quite interesting because towards the end when Beverly, as I said was there about 16 years, towards the end of that 16 years, the philosophy was changing so drastically and Elwyn was changing drastically because the man who had been the director was leaving and right before he left it was evident that they were making big changes there. Because Beverly ran afoul of some medications there that was, it was very unfortunate situation.

22:28:31:26 - 22:38:17:26

L. Charlotte as your advocacy continued with ARC, certainly one of the concerns of the ARC was the Right to Education which they successfully sued the state for in 1972. Unfortunately not in time to support your daughter.

C. Correct.

L. But they did do that.

C. Yes, wonderful.

L. And it was largely recognized, I think, by the ARC that that was the first step to closing state centers, state institutions.

C. Mm-hmm.

L. As part of your work with ARC did you have opportunity to visit state centers and if so what was that experience like?

C. Yes, yes I did. We were very concerned. Meaning myself and members of ARC, with the persons who were in state centers and what kind of treatment they were getting and so forth. And so we had a committee set up who would do visitations and um, at the time that I was president of ARC uh, my vice-president, her name was Carol High, she was very interested in the committee and Carol High and I went a couple of times to Embreeville State Center at midnight and knocked on the door and said that we were from ARC and wanted to come in and look around and quite frankly I was surprised that they let us in but I guess by law they couldn't stop us. I don't know but they said ok, come in. So we did and uh, we would go in the wards and uh, they would flick the light on which I felt bad about. We didn't stay long. We just kind of wanted to look and the place was run with cockroaches. It was horrible and the paint was peeling off the walls and the ceiling and there would be paint chips on the floor. It was just not a nice place. And whenever I talk about the institutions, in one way I feel a little bad because no matter what the institution was there were always some good people there that meant well and tried to do their best and felt compassion for the people that were there but they were overwhelmed by the conditions and just the coldness of these places. I mean it was anything but what you would call home. I mean cold tile floors and metal furniture and just, I just, it was, just the first time I went to Emeryville I came home and I could not sleep for about a week. I really couldn't because I couldn't get the images out of my head that I had seen there. And in so many cases the folks that were there were so attracted to us when we would come in. They would be so thrilled to see somebody because a lot of people in there had no one. Back in the old, old days people, if they had a person with a disability, would sometimes places them in an institution and just take off and go to another state and that would be it. And so uh, I had a relationship with two gentlemen from Pennhurst at one time and they both had been placed at Pennhurst when they were about seven years old and never, I don't think, saw their families again and I don't really think either one of them were very much disabled but I think after being in Pennhurst for 52 years, they certainly needed some guidance. So this was common in those days and again in Pennhurst there were some staff there that were kindly and it was interesting because the ARC tried to further the idea that these were people. These were adult people and should be treated as adult people. And many times you'd run into a staff person that would refer to these people as my babies and my, my little guys or something, you know. And ARC, that would disturb us greatly because it wasn't really the right thing but by the same token these people were so compassionate that you couldn't dislike them for being that compassionate and wanting to care for these folks who needed care so desperately. But I visited Emeryville many times. I remember one time going into the dining room when their food was being brought in and it was not cooked in the building. It was cooked in another building and put on plastic trays with covered portions and brought in on big carts and then delivered in this dining room that had the tile floor and the plastic furniture and they'd plunk down the plastic tray and take the lids off and there would be some peas and carrots or whatever it was and it certainly wasn't appetizing, that's for sure. And I remember thinking oh gosh, how cold this was. Just know I don't mean cold literally, I guess it was reasonably warm, the food but such an atmosphere and so many times with anyone that is disabled meal time is a big feature of the day because sometimes you're not doing much else and oh gosh it's lunch time and so then to just get something that's kind of awful, uh, is sad. It's depressing but I did and I remember visiting Pennhurst and going in a ward where people were just wandering around with and some of them just had diapers on and there was urine all on the floors that someone would come around every so often with a mop and mop up and so forth and just horrendous really, horrendous. I can't imagine how anyone would not be affected in seeing that kind of thing. So we would come back and make our reports and the reports would go to Legislatures and here and there and we, meanwhile the ARC of Chester County joined the state organization and so uh, it grew and grew and people become more and more aware of this situation and anyone who had any kind of a conscious seeing some of these things certainly would say oh my word, you know. What can we do? Um and so we did, we did, we had all kind of fundraisers and, and the state organization climbed on and really went to town with getting institutions closed. Now there were a certain group of people that were not in favor of closing the institutions. They were comfortable with the fact that this was a brick and mortar building and that there were three meals a day and that these people were not out in the cold, or out in the rain, they had a roof over their heads, and that there were a group of some reasonable people trying to deal with them and so on and so forth and in that they felt a safety and placing them in the community was a new thing and they just were so suspicious that this wasn't going to work and so afraid to have their loved one turned out. There was a sense of security in this brick and mortar type institution and so there was in Chester County, I guess it was Chester County, was their base. I'm not sure if it was Chester County or Montgomery County but there was a group that were very vocal and uh tried to fight hard not to have Pennhurst closed but fortunately we won.

22:38:18:08 - 22:40:27:14

L. Do you remember the name of that group, Charlotte?

I think it was called VOC [VOR] or someone like that. There was a lady that was pretty much the vocal part of it and uh and she was, she was quite vocal and quite uh, I'm going to say quite strong in her opposition and uh but when reality set in there was no question. There was just no question that what ARC was doing was the right thing. And there was a group from Pittsburgh; Marsha Blanco was the director of ARC up there, the Allegany County ARC. And Marsha was a fire brand too and she really did a lot of good work up there and all over the state because by that time I had left, not left Chester County ARC but I was no longer president and I moved onto the state organization and eventually became president of the state ARC and it was, I thought it was wonderful. We had so many people that were so, so adamant in their want to correct things and make things better for these folks that were disabled. So it was great to be with them. It was great to hear their experiences. It was great to share and take these things back to our local chapters and they really, they really did the job. It took a while, I think it was like 11 years before they finally closed Pennhurst but it closed and it was good that it did.