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David and Kate Fialkowski chapter 6




chapters

Chapter 1: Family Background
Chapter 2: Walter and David Fialkowski, and Leona's Early Advocacy
Chapter 3: Raising Children with Disabilities in the Absence of Supports
Chapter 4: Leona's Early Advocacy, Longfellow School, Evolution of Education in PA
Chapter 5: Inclusion in Public Schools
Chapter 6: Walter at Woodhaven (you are here)
Chapter 7: Leona and Work for Pennhurst Special Master, Walter in Community, Leona Resigns from Woodhaven Board
Chapter 8: Walter's Death, Finding a Path for David
Chapter 9: Marion's Death, Leona's Continued Advocacy, Planning for David's Future
Chapter 10: Kate's Advocacy, Leona's Legacy
ADDITIONAL MATERIAL: Home Movie Footage - Longfellow School, 1968, Bridesburg, PA, by Leona Fialkowski

transcript - entire interview

David and Kate Fialkowski Interview (Word)


transcript - current chapter

Chapter 6: Walter at Woodhaven

Lisa: I wonder if when your dad retired if he became more involved with in your mothers advocacy work.

17:58:30:27-18:01:33:20

Kate: (To David) Do you remember Daddy living at home? Do you remember him around the house all the time? So, our dad retired, yeah, around 1976, and let's see. I was 12. You were 14. That means Walter was 25. And so, up to that point, yeah, our mom did everything up to that point, but then Daddy was in the house all the time, right? I mean, all the time, so the game completely changed at that point, and really, there were a couple things conspiring, so you know, I was older, so my mom had more time, and my dad retired, and so he was in the house all the time. The court cases were picking up steam, and parents were sort of coming out of the dark and into the open, and into the light with their children, and so all of these things were kind of going on at the same time, and so, before we used to sneak around getting groceries and buying groceries and then you know, staying out a little longer and going to somebody's house, but there was no more sneaking around, because my dad would say, what time are you coming home, and he was there, so if you would say 20 minutes, he was like where were you?

(To David) So really I think that Mommy had to include him, right, or it just wasn't going to work, because he was picking up the phone, and he was answering the door, and he was saying, where are you, so I think that the two of them really had to sort of navigate this new terrain, as all couples do.

When there's a retirement, life changes, and people are home together all the time, so they really had to renegotiate what their roles and responsibilities were, and the phone was ringing all the time. Parents were calling all the time, because by then, she had sort of built a reputation, and you know, people really were calling if you need help, especially parents were calling all the time. I don't know what to do this, and I don't know what to do with the school system, and I don't know how to get these things, and I don't know how to get anything, and people would call. Total strangers would call and say, I just spoke to so and so, and they told me if you need a friend, call Leona, and so our phone was ringing off the hook all the time late into the night, and um, when Daddy used to answer the phone, he would start the conversation with a joke, and then say, hold on, I'll get mother for you, and then pass the phone over... .

Lisa: Do you think you - -

Kate: ... and it was really interesting.

Lisa: I'm sorry to interrupt.

Kate: I'm sorry.

Lisa: Do you think since he had been out of the home so much, do you think he realized the extent of your mother's advocacy involvement?

18:01:48:07-18:03;12:16

Kate: No. I think that he knew it in terms of David and Walter personally, but it wasn't until depositions and the court cases that he really started seeing and understanding that it wasn't about us anymore, you know. There was a real turning point you know as things started happening. There wasn't a single decision that she made that was just about David and Walter, and like the bus, there was never a thing that she did that was just to benefit David or Walter, that every single stance she too, every single move she made, every single speech she gave was on behalf of all of the families that she met, this collection of people who deserved to be treated humanely and justly, and so I think that for my dad, it wasn't until he retired that he really understood how big this was and that it wasn't us anymore, and it wasn't just our family anymore, but it had take than on its own, sort of its own life.

Lisa: In 1977, David and Kate, your brother Walter, I think, was the first person with a significant disability to move into a community living arrangement in our city in Philadelphia, and I'm wondering why it was that your parents chose to move him into a community living arrangement, and what that was like.

18:03:42:19- 18:07:27:23

Kate: Well, I don't know if that's the year that he moved into the community living arrangement. I'd to have think about that. Walter moved from home to Woodhaven, and so, as Pennhurst was closing, the Pennhurst dispersal was beginning to happen, the case was happening, the Pennhurst case was happening, as the Pennhurst case was happening, Pennhurst, a lot of Pennhurst was really just about overcrowding, and the class-action individual were really unwilling participants in the class-action. A lot of they will were unwilling participants in the class-action. They didn't necessarily want to close Pennhurst. They just wanted things to be better at Pennhurst, and so what happened as a direct result of Pennhurst was Woodhaven was opened as a new sort of pseudo-community, nouveau -institutional model where it served really two purposes.

This is not really historically correct by my recollection that it served two purposes one was there was kind of this theory that individuals from Pennhurst could not come from Pennhurst and go right into the community, that there had to be some sort of transition that happened, because how could you take people who were dehumanized and not wearing clothes, and not wearing underwear, and being hosed down and sleeping in racks of beds, individuals who looked a lot like concentration camp victims, and how do you take them and then reintegrate back into the community, that you couldn't take people and move them directly back, you know, directly into the community. So, the purpose of wood haven was sort of to train people from Pennhurst on how to be community participants, and so there were road trips to the community to participate. On the other part of wood haven was that the industry sometime didn't have an industry around it, and people still weren't very well educated, and so, part of the purpose was to be able to get from the university to go to Woodhaven and to use it sort of as a research facility, where let's go study a bunch of people with disabilities, and then start practicing new techniques and learn how that all works, and then you know, we can be better professionals in the field.

So there's a number of professionals in our field today whose origins were that they got their first jobs working in Woodhaven and that they learned everything at that time, and that it was new and exciting, like it was all based on what can we do? We don't know. We don't know. And so, in a way, it was very helpful, because it was sort of like as parents, let's just experiment.

[David's Voice]

Kate: So, in a way, it was let's just experiment and see, you know, see what this is, and see how it works. And so Walter was in Woodhaven, and at the time, Mommy was on the board of trustees of Woodhaven, so she was actually on the board of Woodhaven, and I think that her appointment was a governor appointment on the board of trustees of Woodhaven, and so that lasted a couple of years before she moved them out to the community.

Lisa: I wonder, your parents had worked so hard to keep Walter at home.

Kate: Yeah.

Lisa: To make the decision to move him into the community had to be quite difficult. Why did they make a decision to do that?

18:07:53:02-18:10:23:17

Kate: Um, just to move him out of the home was sort of a big deal, and so I'm just going to go back to Woodhaven for a second, and talk about Woodhaven for a second. For Woodhaven, the movement out of the house, I think had a couple of things. Our parents were really getting a lot older already, and Walter was fully grown, and they were having difficulty just with the physicality of trying to manage both David and Walter at the same time, and that became really, really difficult. Walter was much bigger and heavier than David, and it was just really hard to do that, and also at that time Daddy was sick, and he had been diagnosed around that time with cancer, and so, they really started considering what is going to happen next, what's going to happen next.

So, the opportunity for people to move into Woodhaven happened, and so, my parents made the decision for Walter to go into Woodhaven. I remember that, and I was really shocked by it, because I knew what had been happening at Pennhurst.

(To David) Mommy was in the Office of the Special Master for the first office of the special master for Pennhurst dispersal, and she certainly had her own story, but it was the first time I saw pictures.

So I saw inside the doors of Pennhurst, so there were sealed envelopes that were the stories of people who were coming out and that they were going to need placement, and what's the transition, and how do we work the transition, and she was a parent liaison, a family advocate to make that transition, and she had secret documents at home, and I snuck into the secret documents, and so opened the secret documents so that I could look and see what was all of this all about.

Lisa: Are you comfortable sharing anything that you saw when you looked into those documents?

18:10:40:29-18:15:03:01

Kate: Yeah. So the stories of people who were living there were really remarkable, because each of them had a name and was a person, so it wasn't like Suffer The Little Children where these are kind of nameless images moving across the screen. These were people were names and ages and where they were from and their family of origin, and their stories with them, and my mom would be so ashamed if she knew that I snuck into these. I never told her that I snuck into the files, and so there were stories of people for example, there were some people who had no intellectual disabilities whatsoever, but they might have some physical disabilities. They might have had vision impairments or were blind or deaf. In particular, people who were deaf, because they didn't have the same verbal communication skills, and so often people who were deaf were considered people who had cognitive disabilities as well, because anybody without verbal skills really were deemed to have an intellectual issue, and so, there was a whole range of people on what their capabilities were. There were pictures. There were graphical pictures, so you know, I saw the pictures of the wash rooms, and I saw the pictures of the cribs and the restraints that people were held into, and so, it just had the picture of these real, real people in their lives and their situation and their status sort of before and after, and for some people, their acquisition of institutional behavior, so they may have entered the institution with no cognitive or, you know, other disabilities, but it was sort of a dumping ground, and so when they came out of the institution, they had all of these behaviors where people thought that they had all of these disabilities, and they didn't actually have them.

I met a couple of these guys at Woodhaven when my brother moved into Woodhaven, some of his cottage mates were from Pennhurst, and so, there was one guy, and everybody just thought that he was speaking gibberish, you know, that he wasn't talking and so people would just say he was speaking gibberish, and I remember, because he was a relatively short man, and he would come up to me, and he would speak to me and then walk away, and everybody said, don't listen to him. The people who were working there would say, don't listen to him, and he came up to me, and he hit me in the arm, and then he said something to me and walked away, and I looked at my mom, and I said, I said, do you think that he's speaking gibberish? I think he's talking. And my mom came over, and you know, we kept coming back and talking to the guy, and the guy would come up to me every single time and he would come up to me, and he would hit me in the arm, and he would say," son of a bitch", and I thought, did I hear that? But I kept listening to this, and he did, and he would hit me in the arm, and he would say, "son of a bitch" and then walk out, and then we realized this guy he was just really pissed off, like you know, imagine, you know, that he had been trapped his entire life, and he had this kind of like pent up thing, and so there was this vocabulary inside of people, but nobody was listening to them, and so my mom would go up to him all the time and have a conversation with this guy in his own way and in his own words, and he would express his emotional state in some way to her, and they would sit every time we visited and have like a little conversation. So it was pretty amazing.

Lisa: You met this gentleman and other folks in the context of visiting your brother, Walter?

18:15:09:21-18:18:30:00

Kate: Yeah. Yeah. So it was really hard to go from Walter being at home to Walter being in Woodhaven. On the one hand, you know, I'd seen these guys lives in pictures, and so Woodhaven was nothing like that. There's cottages. It was all brand new. Everything was new. The equipment was new. The painted the smell of new paint, you know. The cottages had rooms that were meant to look like living rooms, so they had, you know, little couches and little chairs, and you know, TVs in the living room, and the bedrooms were like dormitories, so a couple people in a room instead of racks and racks of cots and things like that. But it was still an institution, and you went there visit, and you left, and they didn't, right? I mean that was like a fundamental thing. It's a drop off zone, and so it was really hard to leave Walter and to come home every time we went back to visit and to come home.

So I'd visit on the weekends. I was in school during the week, and I'd visit on the weekends, and I went in with my mom once. My mom talked to everybody. She would go around and talk to everybody, and so she'd walk in and do a tour, and she'd wave a little wave to the staff, and the staff would nod, and then my mom would walk around, (To David) Mommy would walk around to everybody who was in there, and I'd walk around with her, and Walter started, he was angry. She walked in, and he was talking to everybody else, and he's like, hello?

And so he started bellowing just as loud as he -- he was so desperately unhappy, and she was talking to other people, and we were on the other side of the room, and he was just hollering, and a staff member came out and held up a water bottle, a water bottle, and squirted water in the face, because this was the beginning of behavioralism, you know, behavioral modification, and so part of what they were studying was, if you're going to bring people from an institution and introduce them into the community, then you have to have socially acceptable behavior, and so how do we teach people to have socially acceptable behavior? Um, I really had trouble seeing my brother -- it was really hard to see him treated that way, because today we think of that kind of behavior modification in terms of animals, you know, obedience training for animals, and so it was sort of like the last straw for me. Sorry.

18:18:42:05-18:25:58:13

Kate: So it was really like the last straw, like it was different to see all the different types of discrimination, kids in the school yard, you know, the school teachers and how they treated my mom and things like that, but when I went into Woodhaven, and this was supposed to be like the best place ever, you know, and then to see professionals treating my brother like that, I was outraged, I just didn't have words for the outrage that I felt at this, and I took my brother, and we walked out of the room, and we were walking, because it's sort of like a maze, you can walk through corridors, and so we went out, and we were walking through the corridors, and I was angry. I was just so angry, and I remember going out to this one like intersection. They had this corner that had like these big things where people could roll on them, and different colors, and we sat down in this, and it's like big multi-colored stuffed foam, and we went out there and sat out there, and I was so angry, I was so angry, and Mommy came out and sat with me, and Walter was there at the same time, and we're sitting there, and I'm just like crying and crying, and I yelled at her. I was so angry with her. I was so angry with her. Why did you put him here? You know, after all they had fought for, after all they had fought for to get out of an institution, and they put him in an institution, and I just couldn't understand it. I just couldn't understand it, and my mom said to me, she said, you don't understand, and so, she told me the story.

She said, you don't understand. When Walter and David were born, Pennhurst was all there is, all there was at the time, and so she told me the story of visiting Pennhurst, and she didn't know that I had seen the pictures, and she told me about going there and the smells and the sounds and the desperation and the lack of humanity of all of that, and she said -- and she told me that if that's where David and Walter were supposed to be, that she would have killed herself and them, and she told -- that was the first time I had heard that story, and she said, you don't understand what Woodhaven is. Woodhaven is the best there is, and Woodhaven is all of these professionals coming together to learn what this is, and if these people, by being here in this place are going to invent what the future is, and so, by Walter being here, it's not just about Walter being here, but that Walter is contributing to teaching these people on the way things should be and the way things shouldn't be, and the way the future will be, and that that's what we have to do.

She said -- she said, Walter is here to be able to teach people the way that the future is supposed to be, and that these are the best minds in the country come here, and the best minds in the country will come from here, and so even with that, her whole concept was that it wasn't about -- it wasn't just about Walter. It was what would happen from this experience and how was it going to change the world to change the expectations, and that our job and coming to Woodhaven for all of us was to be able to teach the professionals. So this wasn't the professionals coming to teach us. It was that we were coming to teach them, and you know, it just, it was still, it was really, really, really hard.

There were more families who felt this way, so it was sort of like a broken promise. Was haven was a broken promise, because what was supposed to happen was people were supposed to leave Woodhaven and then go into the community, and that was not happening, and what was happening was it was just becoming an institution. The institution started reinventing itself, and so she stepped down from the board of trustees. Members of the board of trustees started writing letters, and they actually started writing commentary on what was the intent of Woodhaven as a facility, and what had it become, and that the only course was that Woodhaven would have to close its doors because the future of this, it just wasn't going to be realized into the future that everybody had anticipated, but it really only took her, I want to say two years to be able to realize this wasn't -- this wasn't happening, so that's how Walter ended up getting into the community was the future was supposed to be the community, and Woodhaven was supposed to just be a stopping ground, the transition point, and so as they were starting to develop a community housing, then Walter moved. He was the first individual with severe disabilities, the labels were then SPI, severely and profoundly impaired, who was moved into a community living arrangement, and he moved from was haven to his house.

Lisa: David and Kate, your mom has sort of offered what was dearest to her, one of her children to this experiment at Woodhaven, believing that with these great minds and this great purpose, that there would be progress. What was her feeling when she realized that in fact it was becoming another institution?

18:26:22:23-18:29:40:02

Kate: Um, I think she felt betrayed, you know. She was betrayed because gee, she was on the board, you know, so she was -- she felt complicity it in this in this in a way, so to be helping parents leave Pennhurst and then encouraging them to move into Woodhaven and for her the purpose of that was the life in the community was an integrated life, was a normal life, was a typical life with a typical lifespan, and so she felt that she really questioned what she had done for some of the families to move them from Pennhurst into Woodhaven, would it be their last place, would it never fully materialize into the hope that it could be, and part of the think about moving Walter -- and the situation all along for her with both David and Walter was that a society is measured by what it does for the least of us, and so, on the spectrum of how they rated individuals with disabilities, David and Walter were both, as I mentioned, at the end of the line. They were lowest on the spectrum, and so, she really, really believed that if you can do this for the least of us, then it's even that much more for everybody in front of them in line, and so, if the least of us can go in a classroom, then everybody else has an even better chance, you know. If the least of us can live in the community, then everybody else has a better chance living in the community. And so, she really sort of used David and Walter as sort of the backstop, because where do you draw the line, you know. If it can be this person, it can be that person. Where do you draw the line?

And so, she really put David and Walter out there as the backstop, that is this is the professionally declared least of us, and we are drawing a line, and so what would be better for everybody else, and so to take Walter and to move him into the community was drawing a line. No, because if the least of us can live in the community, then there is no reason for an institution, and there is no reason for people to have to live in an institution. Of course, that presumes that the supports are available and that the supports are there for the families, and they certainly weren't. There were no family supports. As I said, there was no infrastructure. There were no professionals. There was no medical equipment. There was nothing to be able to help the family, but to do that and to put Walter out there into the community was to move the line forward and say this is what it should look like, and now let's figure out how do we fund this. How do we provide service here? How do we make the community work? And let's transfer the money that's being put into the institutions and put it into the community.

Lisa: David and Kate I have one last question. Actually, it's a question for you Kate, if that's OK, David, before we wrap up for today, and t's going back to the moment when you sat with your mother in Woodhaven and Walter on the different colored foam and sort of seating devices, and asked her about why, and she explained why, that she had moved Walter from your home to Woodhaven. She gave you the explanation. Did that make sense to you?

18:30:12:11- 18:30:41:02

Kate: I'd seen the pictures. You know, I mean, I could certainly see the difference. The things that I knew by then, I knew the difference between Pennhurst and Woodhaven on a practical level, not a moral level, but a practical level, and I knew, I already knew that my parents were older. You know

[David's voice]

Kate: (To David) This is our last question. Had enough? Can I get through this one question?

[David's voice]

Kate: (To David) Do you remember it?

Kate: I don't remember the question. [Laughs]

Lisa: OK. Maybe I'll phrase I more simply.

Kate: Now after that, I just don't remember.

Lisa: That's OK. You said you were angry with your mom for putting, placing Walter in Woodhaven. When she explained why, did you forgive her?

Kate: Did it make sense? You said, did it make sense.

Lisa: I did.

Kate: You didn't say, did you forgive her. [Laughing]

Lisa: No, but I think I'm changing my question to you. Did you forgive her?

18:31:46:18-18:35:44:12

Kate: I did. First of all, I believed her when she said that she would have killed them and her, herself. A little tangent, like almost everybody I know, almost all of the parents that I've met through those years with my mom, they all have a story like that, and it's not just that I would have killed them and myself too, but that they all sort of have that kind of secret, this deep down secret of things that says just how fundamentally they couldn't manage it, and so I really -- I really knew the truth in that. I also knew the truth that my parents were older, and that you know, I was in the house. Our other brothers and sisters had already moved out, and we were home, and the parents that we saw growing up were elderly parents, and tired parents. You know, our father had worked so many jobs, and the physical nature of 11 children and two that required a lot of physical, you know, just physical movement, the two of them were just so utterly exhausted by then that I knew the reality of what that was, and by that time, by those years, I was already thinking, I was sort of already predicting their death. I had in my mind, seeing how tired they were, my dad came to school one day. I was in high school.

(To David) I was in Frankford, and Mommy and Daddy came to school because they had a meeting for you, but I didn't know it. I didn't know they were there for a meeting with you, and I saw Daddy in the hallway, and I almost walked past my own father that I didn't recognize him because he was out of the context, and when I saw him, all I saw was an old man, and then I realized that was him, and we had been to the hospital and different things, and see I really knew, I really the reality of their health and their age and what were they going to do, but it was just like her to turn it into something that would have to be my mission too, like you know, because that I don't forgive her for, so it wasn't like that I could just go in and be pissed off at the staff. Now, from that point in, whenever the staff did it, I was obligated to go have a little word with them, so that I could teach them what the right way to handle this situation with my brother was, so, you know, every little thing was sort of a teaching moment. So, that part I don't forgive her - her, turning everything into a teaching moment. I mean, sometimes you just want to be cut some slack and be a kid and look your wounds, but all of that, there was just a reality, just a gritty reality to that. That's what real life was, and they were tired, and they knew that if there was some way -- their goal was all the way to the very end of the moment that they breathed, they would try to advance the Movement and to be able to use David and Walter as the examples that could advance the entire Movement. And in fact, that's what they did all the way until their last breath.

Lisa: Thank you.


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