Chapter 2: Three Musketeers

00:08:49:29 - 00:11:18:15

L. All in all, how long did you work with PARC?

E. I was there 11 years and during that time period, um, the whole Pennhurst, um, situation came on the news. I remember John Facenda who was a TV reporter reporting it and um then we would hear about different uh rulings that were being made by Judge Broderick and there was no programs to replace Pennhurst at the time but we were learning this as it happened. It's hard to put it back into words now but um, uh one of the people that worked with me at PARC was now working in a base service unit so this would have been around 1971 or so and um, we were meeting weekly at that point. Uh I have to go back someone came to PARC once a week. His name was Sam Scott and he taught the deaf clients at the work training center sign language. Uh, another handicap, deafness, had this whole history in that time period where people were being taught oral tradition or oral communication instead of manual communication and we were in favor of the manual communication side of things so people could learn to communicate and then learn a language. A lot of the, um, mentally retarded residents or clients at PARC didn't have any language. They didn't communicate in sign language. They lived at home with hearing parents and really needed a language. And they picked it up quite quickly and he would come once a week and teach staff and clients that were deaf, sign language. Well he and another evaluator and myself got together, Carol Meshon was the other evaluator and we started having a Tuesday night meeting. Meeting deaf people in the community, deaf people that had social workers that came from Byberry or other institutions and we met once a week to see what we could do to help them.

00:12:06:00 - 00:15:02:27

L. You mentioned two colleagues who you have had a long professional relationship with; Sam and Carol?

E. Yes. Sam Scott and Carol Meshon.

L. Can you tell me a little bit about them, starting with Sam?

E. Sam was again coming to PARC [Philadelphia ARC] once a week and that's how I met him; teaching sign language to the trainees that were at the PARC training center. Um, he was, his parents were deaf and he was working uh in several places at the time doing the same sort of thing using manual communication to help people learn communication skills. These were deaf people who were limited in their communication skills. He went to Pennhurst once a week and um, organized… identified and then organized all the deaf residents at Pennhurst into one unit then taught the staff and residents there manual communication. Uh he went to Byberry once a week and did the same thing there. Uh and then he also had um clients he actually saw in his own home uh to do uh counseling with and was paid by the Bureau of Vocational Rehabilitation because these were people who were uh looking for employment and BVR was helping them and Sam was part of what whole package of them learning skills so they could have a job. Excuse me. And um that's how I met Sam. Carol was actually working at PARC in the evaluation room when I got a job there. Um she was one of the other evaluators. She had also had the training uh that I had mentioned that I had had. Um, and she also had training, I don't really know… I know it was in Menominee, Wisconsin that PARC sent her to be trained. Um, she was also, um, I forgot what my train of thought was. Oh Carol, yes, Carol really didn't have the background in the area. She had a degree in fine arts but uh I guess you could say she was an activist of the sixties. She was in many marches and so she was someone who was always interested in um helping people and uh, I guess we were all young and idealistic at the time in the sixties. So that's how we met, at PARC.

00:15:03:25 - 00:16:52:10

L. So you were talking about some of the folks that you were dealing with who may be carried a dual diagnosis of an intellectual disability as well as being deaf. I'm curious you said you were teaching them manual communication or sign language. Was that something that had not been offered to them previously?

E. Yes, most of the deaf people that are classified as mentally retarded never had manual communication. If they were lucky enough to go to the Pennsylvania school for the deaf, and I'm saying lucky because most of them didn't have that experience, they were taught in an oral tradition. It was actually not allowed to use sign language on campus. Everybody did, you know, when it wasn't in front of the classroom but it was frowned upon as the way of teaching back then. Um, and so we were sort of opposed to that and there was a whole debate of the oralists versus the manualists. But um the sign language we taught the trainees at PARC was very elemental. We had a build up just identifying words and we did it through games and things like a picture of an apple and then you do the sign for an apple. Give me the apple, you know. It was very basic but it was amazing how much people learned that quickly through the manual communication where the oral tradition, they really, um, when they came to PARC often the history was oh he sits at home and watches TV and doesn't do anything was what parents would tell us when they would come in for their initial interview.

00:16:52:15 - 00:18:41:12

L. I wonder if you could tell me more about that. I wonder what life would have been like for an individual without having that ability to communicate with family or with folks.

E. They would sit at home and watch TV. Um, we had, these are adults we're talking about, people in their twenties, thirties, forties who were still living at home with their parents and not working and maybe getting into trouble. Lots of deaf people have a history of getting into trouble. They weren't part of the deaf sub culture because they did no manual communication. Um, they were mentally retarded in many cases but sometimes, I think, they were functionally retarded because of the lack of language. Um, we felt if they could learn a language then they could learn English because the deaf people we knew, who were normal deaf people, didn't really think in English. They think in sign language or in uh, not in English. If you try to think of how you think, you're thinking in English or in a language. Uh, and these folks didn't have that um ability. They didn't have that freedom to think in an expressive language and being able to express their thoughts. It's still for the clients I work with now, the hardest thing is to express a thought for the deaf clients that we have. Um, you know driving a car, cooking a meal, things like that but actual thoughts are difficult when you don't have that language that you grow up with.

00:18:42:05 - 00:20:12:25

L. You had mentioned the Tuesday night meetings where folks gathered to go a little further learning how to communicate manually and I'm wondering if you could tell me a little bit more about the meetings like the types of folks who would attend.

E. Well we met on Tuesday nights. We didn't have any organization. It started off as a social thing to teach sign language to certain clients, to provide guidance to families that had deaf children. We would have parents who had a deaf child and didn't know what to do and because Sam was a part of the deaf sub culture because his family was deaf, he knew a lot of people and so through word of mouth they said go see Sam Scott, you know. And we would have clients from PARC come. We would have client's families come. Um, people from Byberry came with their clients. These were all people that, um, needed some sort of help. Uh and this was the voluntary thing. We just did what we could do through the social interaction of learning sign language. That was sort of our tool to provide the help and uh we did that for a couple of years.

00:20:13:10 - 00:20:52:01

L. Where the meetings exclusively about learning how to communicate or did, um, you address other issues with the folks?

E. Well that was the main sort of theme of the meeting but of course other things were addressed. Uh, job placement, uh I in fact placed a few people in jobs based on them coming to that meeting because I would know maybe of some jobs for my, based on my day time job I knew that certain employers might be willing and so we found some jobs for people that came to the Tuesday night meeting.

00:20:54:15 - 00:22:27:24

L. You had said that, um, some folks would come from institutions like Pennhurst or Byberry. They'd be with their social workers.

E. Mm-hmm.

L. I'm wondering how in turn you reached out to folks in institutional settings or if in fact you did that?

E. Well because of Sam again, he was going to Byberry once a weekend, to Pennhurst, and um I believe his name was George Kopechnik, was at Pennhurst and they had built modular units and one of the modular units, uh, had all the deaf people in it. When I first went with Sam to Pennhurst, I would go with Sam to Pennhurst so off and on his visits. The residents were all over the place in many different wards but eventually they were all moved to one unit which was sort of a transition between being at Pennhurst and being out in the group home. The word group home was being thrown about then because this was the time when Pennhurst, uh, lawsuit was going on and um so the staff they were actually thinking, at least on the unit that I became familiar with, of moving people out. Uh and uh they saw Sam as the contact that they could use to maybe move somebody into the community and that's when we first developed the idea of having a group home for deaf people.

00:22:29:00 - 00:23:49:05

L. Why was it that you and Sam, for instance, um had to work to identify people? Why had they not been identified as deaf when they came into Pennhurst?

00:23:49:07 - 00:25:12:24

E. Well I guess it would seem… it would have been seen as unable to communicate. Um, sometimes the deaf person only responded after being, uh, after observing you doing some movements and if the person had maybe copied your movements that might be a connection there. And uh some people were identified that way, that they understand what you were moving like, if you did this with your hand and they did that with their hand, you know, it was very basic like that to identify people that might be deaf. Um, actually hearing exams with the doctor, I'm not aware of. I wasn't involved in actually identifying people. I was involved more with moving people out but I know Sam was involved with identifying people and used whatever skills he has to do that. Uh, often uh just sitting down with the person and seeing if they understood movement and could mimic what he was saying. Sometimes he would actually find a person who knew one or more sign words.

00:25:14:00 - 00:25:52:04

L. Is it possible that there had been people sent to Pennhurst who maybe didn't have a cognitive disability or a significant cognitive disability but it was their deafness?

E. I would agree with that. We have a resident now who is 92 years old in our group home who's been with us since 1984 and uh he was there 50 years and uh, I would say that was probably part of the reason he was there.