Chapter 2: Walter and David Fialkowski, and Leona's Early Advocacy

16:09:04:06- 16:13:12:19

Lisa: So, I want to David and Kate to ask if I could a little bit about Walter, you know, he's your older brother, was your older brother. I wonder if you could tell me a little bit about Walter's disability, and maybe David you could tell me a little bit about your own disability.

Kate: [To David] I'm going to talk about you and Walter, OK? Is that OK? Um, so, Walter was born um, he's one of the male children as I mentioned before, and Walter was born in 1953, and it seemed that Walter was actually born normal, typical child. My mother tells this, told the story that when Walter was very little, she thought that maybe he had some difficulty with his vision, and they couldn't tell what he could see because his eyes weren't focusing. But all other indicators she thought that everything seemed to be OK, and then Walter was very sick, and I'm just going the skip parts of the story. He was taken to the hospital. He had a very, very high fever, and while he was in the hospital, he was supposed to be put in an oxygen tent, and there was no oxygen in the tent that he was put in, and so there was always some consideration of what was really caused from birth vs. what was something that last really a result of brain damage while Walter was in the hospital.

Whatever the cause, and end result is that Walter was an individual with significant disabilities, including cerebral palsy, and as I mentioned, he was 11 years older than David, so at the time that Walter was born, there weren't any options for anything, and when Walter was born, our mother was told that he should be put into an institution, and that it would be a significant issue for the rest of the family, and you know, she should put him away. So, I just want to say, at that time there were a couple things that were happening because doctors used to say that to mothers all the time. Also, doctors used to tell mothers that it was their fault so that anything that happened really was because of something that the mother was doing. So there was no consideration for what were potentially environmental circumstances, like I just mentioned the lead point for example, what things are environmental circumstances. We lived near Allied Chemical, so there were multiple chemical facilities. Bridesburg, Philadelphia, was a neighborhood that was really known for all of the chemical facilities in the area. It was one of the first neighborhoods that the environmental protection agency came out to check out for carcinogens when they started looking for carcinogens, but none of that was really a part of consideration for doctors, and instead, they told mothers it was their fault, that they were responsible for creating this, and that that was part of the pressure, like you did this, so now you should take care of it, and so you should really take care of this and put this problem away, and so, that's the situation when Walter was born is that she was told that she should be put away and put in an institution.

16:13:12:19 - 16:15:54:01

Lisa: And how did your mother react, Kate and David?

Kate: She -- how can I say that nicely? From what she says, she told them that they could take a flying leap, and that that certainly wouldn't happen. At the point, we had, let's see, Barbara, Mary, Tony, Michael, we already had four children in the family, and Walter was the fifth child, and so our mom said that that's where their children would be, at home with their family, and that's certainly the way she was raised, and she was raised that family took air of each other, and community took care of each other, and that's just what was the right thing to do, and so that's sort of the beginning story of Walter.

Lisa: David and Kate, we know that your mother was not going to send Walter to an institution, I imagine the institution that would have been assigned to Walter would have been Pennhurst.

Kate: It was.

Lisa: But I know that your mother did put Walter on the waiting list for Pennhurst, and I wonder if you could tell me why.

Kate: Yeah, so I think this is a really part of the history for all parents because there were no options, so the only way that the state funded anything, that was the only entitlement there was funding, so there were no family supports back at that time, and all parents were obligated to consider what if something happens to me? What's going to happen when something happens to me? And so, the origin of all of the waiting lists in the country really is waiting lists to be able to get into state institutions for services, because that's the only way that anybody could get any money. So, I think it wasn't just my mother, but pretty much all parents either did admit their children to the institutions in the state, or they certainly put them on waiting lists in case something would happen.

Lisa: Had your mother visited Pennhurst?

Kate: Yes. My mother visited Pennhurst actually a couple different times. She visited Pennhurst when she was told that Walter would have to be put on the waiting list, and her story of visiting Pennhurst is very reflective of Bill Baldini's story on "Suffer The Little Children," so the story that she told was going into the institution and that, if you know, even in the third person, it's hard to tell that story, right, of going into the institution, and children -- they were all called children, even the adults were called the children -- were probably the size of David as David is now, and they were in beds that were essentially cribs that a lot of the individuals didn't have any clothes that they were walking around naked. The women didn't have bras, for example, because that was considered an extraneous piece of clothing. Why would they need bras? And she tells directly the story of individuals instead of getting a shower, that they would hose the individuals down instead of showering people in the institutions, and individuals slept, if they weren't in cribs, they slept in cots one after another after another like a great, big hospital ward.

So there was no privacy. There was no dignity, there was no humanity, and it was a dumping ground for individuals, and there was a lot of suffering. So, you know, it was a really hard situation, and there's a number of parents who say this, and my mom certainly did, that if it came to that, if that's what the end of the road was for David and Walter, she used to say that she would shoot herself and them rather than have the kids go to Pennhurst. That's a pretty shocking thing for a person of faith, you know. Those words are pretty shocking, but if you consider the options, it was a pretty hard choice, and the worst part is that parents were having to make those kinds of choices. It's just pretty remarkable the choices that parents had to make.

16:19:09:12

Lisa: Kate, you just described your mother's experience at Pennhurst, what she saw, and certainly the emotional impact that it had on her. I wonder if that was perhaps the start of her advocacy?

Kate: Yeah. She used to talk about her advocacy in a couple of different stages, know, so the first step of they are advocacy -- and I think this is true for a lot of people. The first step is just there's a point where you say there's the injustice of it, you know, the indignity of it, that it really touches you at a human level that there are human beings that profoundly do not have any rights whatsoever, and that's really first step is that it gets you to act differently, you know, so you're not following the traditional course. The doctors are telling you to do one thing. It's certainly socially acceptable to do that thing. There's a lot of people doing that. It was more socially acceptable to put people away, to put people away who looked different, who sounded different, who didn't behave the way other people did typically, let's keep them behind closed doors and put them away and hide from this, you know, and keep us safe from them, and so that was really the first step in her advocacy was to take the non-traditional course and to fight inertia and to go in a different direction, and so that was the first step was just keeping Walter at home. Walter certainly wasn't hidden. Walter was out on porch. She would take Walter out in the community for example, and so everything was out in the open, and that was really just the first step of her advocacy was living out loud. There was a couple of things that happened later though that made it a fundamental change, and the fundamental change was that David was born, and David was born 11 years later, and I was born 13 years later, and so those two things, although they didn't have simultaneously, in the scheme of things they were almost together, so almost at the same time, there was another child who had significant disabilities and the last child, and you know, there was sort of a limit to what she could do with all those extra children around, you know, so the baby stage had ended, and she had more time to be able to consider what's this going to look like. But David was really the second step.

[To David]) You were the second step in the advocacy. The second step was really to not just take a different course but to say, I have to stand up and do something about it, and um, and the things that were really available for you growing up were the same things that were available to Walter all those year before.

There was nothing available, and I don't think that people today really understand and appreciate how nothing "nothing" was. So, some examples of the nothingness that we had, there were no wheelchairs for Walter and David. My mother, our mother pulled David and Walter in a little red wagon, little red fire wagon, and so there were no wheelchairs. There were no scooters. There were no family supports. There was no respite, no day program, no medical intervention, no augmentative communication devices. There was no absolutely nothing at all, and so, Walter gave her perspective of the future that was in front of David, and the future in front of David was that there would be nothing at all, and [To David] you wouldn't be living the life that you're living today.

That course was a completely different course for you, and so it's really a great thing that Mommy made those changes and really fought for your education. Yeah. So, it was pretty profound, and I certainly hear a lot of parents talk about, oh, there's nothing. Um, you know, so it's just a matter of perspective that nothing really was nothing. [Laughs] it was not enough things. It was zero things.