Chapter 3: Raising Children with Disabilities in the Absence of Supports

16:24:24:01

Lisa: So I wanted to ask you a little bit more about that. What would a typical day in your house be like, given that there were two children, you David and your brother, Walter, who did have some ream significant support needs and lots of kids. What did your day in your house look like or sound like?

Kate: Yeah, so our house -- our house was so loud, our house was just loud, you know. Well, I'm going to back up, because really, it depended on the time of day. So, as I mentioned, our father worked multiple jobs, so when he was working all the time, there are sort of rules around the house that if Daddy is sleeping, you better be quiet, so certainly we didn't do anything to wake up my father when he was sleeping. If he was sleeping in the morning, if he was sleeping from the middle of the day, if he was sleeping at night, don't wake up Daddy. So, then it was silence, but all the rest of the time, it was absolutely a madhouse. It was so loud, and there was a cacophony going on, and there were so many children talking at the same time, and running around at the same time, and we grew up in a row-house that was a three-bedroom, one bathroom rowhouse in Bridesburg, Philadelphia, and you know, three small bedrooms. Our parents had the first bedroom, boys had a bedroom, girls had a bedroom, and one bathroom, and most of our brothers and sisters have some sort of professional expertise as efficiency experts, because we had to learn how the function and a singular bathroom, so we had schedules who was taking baths at what time and who could use the sink, because you couldn't turn the water on the sink and have a shower at the same time

There were really constrained resources, and there would be things I remember being really small, and when I was trying to go to school, I couldn't find two shoes that matched, so I would wake up in the morning and had an extra 30 minutes to try to get ready for school because I couldn't find two shoes that matched, because Walter would take the shoes, and so he always had, Walter always had something in his hand. He always had something in his hand. He always was moving something in his hand, and so it was whatever was convenient to him, and then occasionally whether he was done with it, he would throw it, and you would want to be careful that you weren't in the course of that, of course, but what it meant is that your bits of your stuff could end up under sofas, under chairs, behind things, behind walls, in other rooms, and so, your clothing and all of your bits and pieces weren't necessarily where you left it. So, you know, in most households they say where did you leave it? That was never something that people would say in our house. We always had to wonder where could it be instead of where did you leave it, so it was a mad house. It was a madhouse, and then everybody left, and then it was a very quiet house, so by the time David and I were like in the mid-70s, everybody was gone, and there were just a couple of us left at home, and so it was really a completely different family then.

16:28:12:22

Lisa: David and Kate, what did your parents have to do to physically support you, David, and Walter in the house? What did those physical supports involve?

Kate: (To David) I'm going to start with talking a little bit about Walter, and then we can talk a little bit about you too, OK?

So, I think that it's an important part of the story and you know, parents certainly don't like to tell those parts of the story, and even brothers and sisters don't tell that part of the story, but it was really hard physically, you know. As I mentioned, my brother, Walter, certainly when I was growing up, he was so much older, he was a full grown guy, you know. Water was, I remember Walter as a full grown guy, you know, 13 years older than me, so Walter could walk, and Walter walked down the steps. Walter had difficulty. He couldn't bathe himself for example, and so, my mother would -- not dad, not brothers and sisters, right-- it was typically her responsibility to bathe Walter, to dress Walter and to take care of those things, and so to get him in and out of a bathtub was a lot of work.

Walter's legs were bent with spasticity from his cerebral palsy, and so he couldn't just pick up his leg and move night the bathtub like other people could do, so really, he would put his entire weight on my mother, and she would lift him over and into the tub, and it was just really physical. Walter was incontinent and so, a large portion of the day was spent cleaning things and cleaning Walter and cleaning clothes and cleaning the floor and just cleaning, cleaning, cleaning, cleaning, cleaning. Our brothers, the brothers that I remember at home mostly spent a lot of their chores washing the floors. We had those tile floors, and they would strip the tile floors and wash the tile floors and then rewax the tile floors, and we had a washing machine that was a wringer washing machine, so it had two rollers in it, because the clothing was too dirty, you know. Back then I think part of what people don't understand, we didn't have Depends back then, and so mothers, even for a little infants, had cloth diapers, so everything was cloth is what I'm saying. There was no disposable anything, and so, there were wringers on the washing machine, and we would put the clothes in, and the clothes would agitate, and then you had to pull the clothes out and pass them through the wringers into a wash basin and then by hand rinse the clothes out and pass them back through the wringers to wring out the rinse water, and if they weren't clean enough, you would do this cycle again and again and again and again. So it was really physical, physical labor.

Almost each of our brothers and sisters had a stint of some maiming due to the wringers. Mary tells a story of her hair getting caught in the wringers. She turned her head, and her hair was really long, and the wringer picked up her hair, and you know, wrung out her hair. Eileen had her hand get crushed in the wringer, so this was, you know, this was not for the faint-hearted. This work was not for the faint-hearted, and knows of the time our laundry, our mom hung the laundry outside on clothes lines so that it would dry outside on the clothes lines, and then bring it in, and that was a normal day, and that was a normal day, 24/7.

Lisa: David and Kate, I know that your parents also kind of took on the role of physical therapists for you, David, and your brother Walter. I wonder if you could tell me a little bit about that, and maybe why they weren't already receiving that kind of support from the doctor's or professionals?

Kate: Yeah, so back then, first of all, that there weren't really that many professionals back then is sort of the punchline to the story. People didn't know what to do. There were medical doctors, but there weren't really specialists for persons with developmental disabilities, and there were a couple of different things, so our dad was a gymnast. That was one of the things he had done as a young man, and so, he was really in tune with how the body works and how the muscles in the body work as a gymnast that is, and the types of things that they used to do, you see them on "America's Got Talent," and I need to use my hands. They do balanced moves with a person holding a person up, and then the other person levitating themselves up on top of the other individual, so our dad was really familiar with how the body worked. Having Walter and David both born with cerebral palsy, he worked very hard to try to ease this tension in the muscles in the legs to be able to give them more flexibility, more rotation, and for both of our parents, their primary concern was, what would the level of independence be for David and Walter?

So, the concern all along was about this, like what does the future hold after we are gone? What does the future look like after we are gone? And what skills and things will David and Walter need to be able to have a degree of independence, and the primary thing that our parents focused on was really capability fundamentally to stand and to walk, to be able to stand and walk. Then you wouldn't be dependent on somebody else to take you somewhere. You would have at least that initial beginning degree of independence. So, the older kids tell the story of Walter learning to walk, and as Walter learned to walk, our mother would hold Walter on a string, and she would pull him with a string, and then he learned to walk holding onto a string, and little by little, she would let the string get longer and longer and longer, until Walter was really walking independently. I wasn't there at the time, and my brothers and sisters say that that took until Walter was about seven years old that he learned how to walk when he was about seven, so he could stand up, he could hold onto things, but it took until he was about seven to be able to walk independently. Um, so our parents tried a similar thing with David, and David used to scoot around on the floor. So he didn't crawl, but he would sit on the floor with his knees up in front of him, and then move his legs forward and scoot, scoot, scoot on the floor, and so our parents would work with David so that he would stand up, and then once he was standing, and he was small. He was a very little toddler, you know how you hold onto a toddler with their arms them, and then you help them walk, walk, walk, and so as David got older and David got bigger, our parents had David walking with things, with chairs, pushing things, and it was a very repetitive process.

[To David] Do you remember this? And so, Mommy would say to you, stand up, David, and then you would sit there, and she kept saying it, stand up, and you would still sit there and and sit there and then somebody would walk up over to you and sort of pull you up, and then you would stand up with them, and then you would walk with them across the room, and eventually, you would push things like push chairs or hold on to the backs of people, and that's what you would do.

So, this would go on and on, this stand up David, and I remember sitting there, because this went on and on for years, not two years, not four years, not five years, not seven years, not eight years, ten years, 11 years, 12 years. This went on for a really long time. We were in elementary school at that time, and our parents would still say that, stand up, David, and this whole process would start, and I remember sitting on the couch in our living room, and mom and dad were in the front room, and she said, stand up, David, and walk over here, and I remember sitting there like, I'm just sick of this. Just stop it already, like enough with this. This is never going to happen, and I remember my eyes rolling and in my head, you know, how kids are like, and David stood up, and he was sitting next to me, and she said, "Stand up, David," and David stood up, and then he walked across the floor, and he walked into the front room where my mom and dad were sitting, and I just couldn't believe it. How could that happen? I mean, this was more than a decade of doing this, and you stood up. It was the most amazing thing, you know. So when parents say, never give up, that's what a parent means. They really mean, never give up, and it was pretty amazing.

So, even today David uses a walker. Mostly the walker helps David move a little faster. (To David) You move a little faster with it, and you also like the walker because it pushes people out of the way, and it keeps your zone around you, but in your house, you walk by yourself without the walker, and you walk around, and that is a pretty amazing thing. That's a pretty amazing thing.

16:40:22:06

Lisa: So, listening to this story that you just told Kate, it seems very clear that your parents were really the specialists in Walter and David's care, and I wonder how doctors perceived your parents. Did they welcome all of the information and expertise that your parents brought?

Kate: They had a great family doctor, Dr. Concors. He was a pretty terrific doctor, and I don't think that there were any problems with the doctors. It was more the times were changing, and you know, it's sort of a well known fact that our parents had more problems with the school system than they had with the medical profession.

Lisa: Your parents understandably spent a lot of their time caring for Walter's needs and David's needs. I wonder if you could tell me a little bit about the impact that had on you and your siblings.

Kate: I don't know too much about my siblings, to be honest. So, I'll talk a little bit. (To David) I'm going to talk a little bit about me growing up, since I just talked a little bit about you growing up. OK?

It was really bizarre. I didn't think that it was bizarre then, but I certainly think now that it was just so bizarre. My life consisted of, for example, as the youngest member of the family, if my mom went out, I went with her, and she really was my mom then, because I got to have her all to myself, so I was really happy to do that, and everybody was really jealous, of course, and a typical day would be that our mom would have to go grocery shopping. There was a lot of groceries that we needed with so many kids in the house, so a typical day, she would have to go grocery shopping. I would go grocery shopping with her, and it was always a matter of the grocery shopping that we would stop by someone else's house and bring them groceries or just stop in, and they were other parents, and so, she would stop at another parents' house, typically a mother who was a stay-at-home mom, who had a child with significant disabilities, and often these other women couldn't get out of the house at all, couldn't get groceries, couldn't do anything, and so she would bring the groceries to them, and so, every day, almost every day I was going someplace in some stranger's house and hanging out while my mom talked to, you know, talked to another mother and had these mother conversations, and so, my earliest recollection of having children around me, all of the children that were around me were children with disabilities. So, my brothers and sisters were at school, you know. They, Joan is five years older than I am, so it was David and Walter and I, and Joan was already in elementary school, and Eileen was in elementary school, and so I spent every day with mom in parents' houses with children with disabilities. I spent every day -- if dad had the car, then we would go to the corner store instead of the grocery store, and David and Walter would be in a little red wagon, and I'd be walking alongside the little red wagon, and you know, this was before ADA. There were no curb cuts, and so she would take the wagon and roll it off the curb and then try to lift the wagon back up on the other side of the street, and there were medians, and off the curb and up the curb, and she would go into the corner store, and I would stand outside with David and Walter, and the red wagon and wait for my mom to come out, and she would put cans around them, and so, I went to the grocery store with her, and I would bring my dolly stroller, and I would ask these questions, if my doll can have a stroller, why can't David and Walter have a stroller kind of thing? It's a lot easier to push a stroller than to push a wagon. I didn't know what a wheelchair was, you know, but the stroller concept seemed to make perfect sense, and so, she had to explain to me that there were these things called wheelchairs, but that they couldn't afford them, and there wasn't anybody who had money for them, and so the little red wagon it was. At home, if I was in the house, then David and Walter would be with me all the time, so if she was doing chores or you know, had to run over to the neighbor's house or something, then I was with David and Walter, and it made me angry. (To David) I was angry to be with you, because if I wanted to go downstairs and you were upstairs, then I was stuck upstairs, and you know, I just wish you could get over that and you could just head downstairs. I didn't want to wait around for you, and there were practical things, so there were times when I was slightly older, that I walked you downstairs, and this was a point where David was holding on to things to walk, and I walked you downstairs, and we slipped and fell, and we careened off of the steps, off of the landing, and into the living room, and that was probably the most scary thing that ever happened to me was trying to figure out how could I walk you down the steps and walk you around the house. That was pretty difficult.

So, yes, it was like every day was kind of like that, and I remember my dad catching me one day. I was upstairs playing, and I had blindfolded myself, and I was walking around the house upstairs. I didn't think anybody was home, and I had blindfolded myself, and I was walking around upstairs, and my dad came up and caught me doing this and took the blindfold off and said, what are you doing, and I explained to him that I was pretty sure that everybody had disabilities, and so I was practicing, and different days I would practice different disabilities, and so, I was getting ready for when it was my turn to have a disability, would I still be able to get around, and what would I be able to do, and how could I manage by myself. That's kind of a weird story, if you think about it. I don't think that's like a typical kid's story, but it was so pervasive that all of the children around me were children with disabilities that from my perspective, if really was that disability was natural, and it was just a matter of time when it would happen to you. So, yeah, it was pretty freaky. My dad was really -- he was really, I remember how overwhelmed he was when I said that to him, because my father then was not an emotional man, and when he caught me doing that, he just sat me down to have a conversation, and you know, he was just so overwhelmed with the consideration that I thought that that happened to me, so we just sat there for a while, and he tried to explain how this works and what a developmental disability is, and I never thought I could catch it from anybody else, but I always thought it happened to everybody else, you know, so it was pretty difficult. It was overwhelming. Pretty weird, but that was really my normal, everyday life, you know.

16:49:37:26

Lisa: So, Kate, you had mentioned that you would go along with your mom to visit people in their houses, often after grocery store trips. Maybe David you did as well. Maybe you went along as well, and I wondered what you saw in peoples houses, how other people were coping with their own children with disabilities.

Kate: Yeah, everybody else's everyday lives were just as weird, right? In our house, it might seem overwhelming to most people to think about all of those kids, but one of the advantages of having all of those kids is there were older kids to take care of the younger kids, and so there was sort of like this family support infrastructure. The older girls and the older boys were doing things around the house, and even though a lot of that was heavy labor my mom did herself, there were chores, and everybody had chores. So, in going to other families' houses, though, they didn't have the infrastructure, and so for us, mom could get David and Walter out in the red wagon, and then you know, like I said, I could stay outside the store, and she could keep an eye on us, and we were there, and other families, they couldn't do that, so there were other children that I met who were children who had more significant disabilities. There were children with every conceivable kind of disability. There was a little boy who was in a brace from his neck all the way down to the tip of his feet, and braces back then weighed about 200 pounds, you know. We didn't have a lot. You know, this was heavy steel on children's bodies, and so this little boy, he needed his mother to raise him up right, and she would have to dead lift him, and then he could stand for a little while and stand inside this metal cage that was around his body, and it had pins in his legs, actual pins going through his legs, and he would stand up. I'm just using that as an example. I mean, there were just like everything, and it was so different that there really wasn't any of the medical infrastructure, anything like that, and so in these houses, the mothers couldn't get out at all. The mothers couldn't go grocery shopping.

They didn't have a way. That mother didn't have a way to take that little boy with her. She could hardly stand him up. He couldn't sit in car. He could only lay down or stand up, so there was no way to get him in a car. He couldn't [sit] in a red wagon. He couldn't walk to the store, and so choices that parents had to make every day were things like, what do I do if I need to go out and get something? There were children who were left alone in their houses, and parents would lock the door to a bedroom and then run down to the grocery store and then come back, because what would they do? There wasn't anybody around.

There wasn't any help or any infrastructure. There were children who couldn't get out of bed because they had gotten so big that the parents couldn't lift them out of their beds, and there was still a lot of secrecy, so there were all these things going on, and some families, some families, because of their beliefs or you know, different aspects of the family, the family was ashamed of the child, and so, you know, when we talk about the movement, I think that one of the most amazing things about our mother is that she helped people come out into the light of day, you know, so that first step that she took with Walter was the first step that she helped hundreds of mothers take was just the first step out into the light of day, not fighting the system, not fighting anything, not going to court, none of that, just come outside, tell your neighbors what you need. Call me. Call each other, and so these parents' groups started forming where parents could support each other. Parents could go over and watch each other's' kids so they could get out five minutes, have five minutes off or go to the grocery store and do something. But it was pretty -- it was just really, really remarkable that there were whole families that were just trapped inside their house, and you know, our job was sort of to go visit the bedridden, you know, and I think that's part of my moms background is that whole taking care of the community, and that's what people would do, if somebody can't get out, if you have an elderly family member or somebody who can't get out, go to them, right? And so, that's what she did. She went to them.