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Visionary Voices
Interview with David and Kate Fialkowski (Part 1)
June 25, 2012
Chapter One: Family Background
15:43:49:28 - 15:46:26:10
Lisa: My name is Lisa Sonneborn, and I'm conducting an interview with Kate and David
Fialkowski on June 25th, 2012 at Temple University. Also present is videographer Aggie
Ebrahimi Bazaz, and Kate and David. Do I have both of your permission to begin your
interview?
Kate: Um, are you ready? OK.
Lisa: We are going to start. Thanks. The first question is, I hope an easy one. I was
wondering when and where each of you were born.
Kate: Um, so both of us are born in Philadelphia, Pennsylvania, and David was born in
March, 1962, and I was born in July, 1964, so we are two years apart.
Lisa: And can you tell me if you come from a big or small family?
Kate: We come from a very large family, don't we? We come from a family of originally 11
children.
Lisa: Can you tell me their names?
Kate: Barbara, Mary, Tony, Michael, Walter, Jimmy, Eileen, Joan, David, and Katy, and we left
out our brother, John, who died as a baby.
Lisa: So, Kate and David, this is a question for either/or both of you. How would you
describe what it's like being part of a big family?
Kate: How would you describe being part of a big family? It was chaos, wasn't it? So, I
think there's a couple of things about being part of a big family. Our family was so large that
we really didn't consider it one big family most of the time. We considered it three smaller
families, so there were the older kids, who don't dig being called the older kids anymore.
Barbara, Mary, Tony, Michael, and then there were a middle set of kids, Walter, Jimmy,
Eileen, Joan, and then David and I. And when we were growing up, my mom would actually
say her babies were the last ones at home, and the last ones at home actually included
Walter, so it what Walter, David and I were the last kids at home, and everybody else had
moved out.
15:46:26:10 - 15:48:26:09
Lisa: Can you tell me a little bit about your parents, maybe starting with their names?
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Kate: Our parents were named Marion and Leona Fialkowski, and my father's family were
Polish immigrants, and my mother's family had been here from the very beginning. They
were trappers and watermen who were some of the first settlers in the country.
Lisa: You said "here." Where was here?
Kate: In the states, I mean. Settlers in America.
Lisa: In what part of the states was your mom from?
Kate: My mom was born in Crisfield, Maryland.
Lisa: Kate and David, can you describe your parents a little bit in terms of maybe what they
looked like, what their voices sounded like? How would you describe them?
Kate: So, our parents were, you know, they've been gone for a long time, so our mom was
about the same height that I am, and she had brown, wavy hair, and people used to remark
on her giving personality, and how open she was and how caring she was for other people,
and my dad, my dad seemed bigger than he was. He seemed taller than he was, and he had a
very big personality, and his favorite thing to do was to tell jokes, so he used to read
"Readers Digest" so he would have a whole selection of jokes for anybody who would call on
the phone, or anybody who would stop by the house.
15:48:26:09 - 15:52:19:24
Lisa: Kate and David, your mom, Leona, was a important transformative figure I think in the
disability movement as well as being a much loved parent and advocate. I wanted to talk
with both of you today a little bit about her life and work.
Lisa: So, David and Kate, I wanted to ask a little bit about your mother's experience growing
up in Crisfield. Sorry. Crisfield, Maryland. I know that she was, that generations of her
family had lived there, and I wonder if you both could tell me a little bit about her
experience, her family background, her cultural background.
Kate: Great. Yeah, so our mom was born in Crisfield, Maryland. It's a very small town, and
it's a very southern town on the Chesapeake Bay, and so, our mother's family were really
watermen in the small town. Watermen are people who live their life and make their living
off of the water, essentially, and so the origins of her family were people who were trappers
for example, other watermen, for example, and people who originally came over from
France, you know, the French trappers that came into the country, and so they were some of
the pioneers of the country, and actually, we have an Indian princess as part of our family,
Princess Mehiliabelle who is our great, great, great, great, great-grandmother, five greats
back, and so, it's sort of a really proud heritage that our family has of being able to live off of
the land, to just take whatever is front of you and to be able to make something of it, and to
be able to live from that, and I think an attribute of the that time was that the people who
live like that also take care of each other very much, so it has all the attributes of a small
town, but the difference is it's more pioneering than that, so it's a little more rugged.
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15:52:41:21 - 15:54:05:05
Lisa: I was going to ask if your mom, David and Kate, was from a large family also?
Kate: My mom's family was really pretty small, so she only had one brother, and it was just
the two of them in their family, and yes, and my father's family just had a couple of brothers
in it. So both of them really came from fairly small families.
Lisa: Did she ever talk about the community that she grew up in?
Kate: She talked about it all the time.
Lisa: What did she say?
Kate: So, Crisfield, Maryland, was first of all a lot of people are related, so if you go back and
you look at the census, most of the people came from a place called Byrdtowne, so a lot of
the landowners' name was Byrd, and you know, that's how it was in the south at that time,
that there be one big landowner, and then there would be a lot of people who would be
working the land or in the community, and so the whole town would be named for that
person, and then a majority of the people in the town, of course, would be related because
they would all come together and live together, and their family would come into the same
area. And so, a majority of the town were aunt's, uncle's, grandparents, cousins, you know,
and some remote affiliation.
15:54:05:05 - 15:55:25:21
Lisa: David and Kate, when your mom grew up, wait the Depression era, and I wonder if
growing up in the Depression shaped your mother's personality in any way?
Kate: Absolutely. I think everybody who grew up in the Depression had it shape their
personality. I think that the attributes of that though were not just about being in the
Depression, but like I said, some of it's from being a pioneer, so don't you think those
attributes went together of just making the most of whatever you have, right? And so, being
part of the Depression, there were some people in the town who had agriculture, and so, if
they had lettuce or something from the earth, then they would bring it in and share it with
some people. My grandfather was a waterman, and so that part of the family would be able
to bring goose in or fish or oysters or crab or whatever to the table, so everybody would
participate together, especially since so many people were part of the same family.
15:55:25:21 - 15:56:24:03
Lisa: David and Kate, I wonder if faith was an important part of your mother's upbringing?
Kate: I guess what she always said was really that it was more matter of faith than a matter
of religion, and so, religion is really something that is created by men, and faith is something
that's created by God, and so it really was a large part of her background to be very faithful,
but also to be part of the community.
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15:56:24:04 - 15:58:15:26
Lisa: So, David and Kate, I wondered if you could tell me about where your mom went to
school.
Kate: I really can't. [Laughs]
Lisa: Did she go to school?
Kate: Yeah. It's interesting, because I think that Crisfield had a high school, probably
Crisfield High School. Our conclusion is that it was Crisfield High School. [Laughter]
Lisa: But she's a high school graduate?
Kate: Yeah. Part of it is that during those years, a couple of different things were happening,
so the country was coming out of a Depression, and also, World War II, right? And so, all of
this, schools and everything are kinds of interrupted during that time, and so, things weren't
operating the way that they operate now. You know, because kids would take a break, or
part of the class would leave, and the one story that she told me was that they used to rotate
in schools so they have A and B classes, and so, for the agricultural season, so kids would
roll in different parts of the year and roll out different parts of the year so that they could
work around agricultural schedules and things like that. So, it's not linear like it is today,
ninth grade, tenth grade, 11th grade. There was some 9 (a), some 9 (b), something like that.
15:58:15:26 - 16:00:27:13
Lisa: You mentioned World War II. Your mother played a role.
Kate: Yeah. My mother was in the women's air corps from Dover Air Force base, and the
women at Dover Air Force base flew B-29 bombers. They worked in the manufacturing
plants to build them, and some of the women were also ferry pilots and took the planes on
missions for refueling and different trips on the planes. So it was a pretty rare group of
women who did that, and in fact, it's almost impossible to figure out who the women are
because it was except a small group of women. It started out as something that wasn't
official, so it wasn't officially documented, and all of the records were destroyed at Dover
Air Force base, and so there's actually a group of women whose history in the war is
unknown because they have lack of records, but they have photographs. So, it's kind of an
odd little situation. But it's easy to imagine my mother up in an airplane and flying an
airplane.
Lisa: How did your parents meet?
Kate: Our parents met at a USO party.
Lisa: And what was your father's role in the military?
Kate: He was in the army, so and one of the things that my father did in the military is he
was part of the military police, and um, as a member of the military police, they had
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individuals who were in the internment camps, and he was responsible for watching some
of the prisoners in the internment camps, so that's a pretty unusual thing. They flew people
back from Europe here to the United States and then kept them in internment camps here.
16:00:27:13 - 16:02:58:18
Lisa: When did your parents marry, David and Kate, and where did they settle?
Kate: Our parents married around the mid-1940s, and they settled in Philadelphia about
two blocks away from my father's family.
Kate: Our father was a Catholic, a staunch Catholic, Polish Catholic.
Lisa: And what were your parents like with each other, do you recall?
Kate: Do you remember mom and dad in the house? So, our parents were very loving
together. You know, I think that I should just interject that our recollections as the youngest
children are completely different than our brothers and sisters. So I just want to put the
caveat out there for any of my brothers and sisters who might watch the videotape that
these are not necessarily the recollections of the entire family. So, as we were growing up, a
lot of kids had already left the house, right? So that's sort of a whole different scenario than
a house full of ten kids rushing around. And so, whether we were growing up, my oldest
sister, Barbara, was in college, and she was a poet and a writer, so she would send some of
her poetry back, and our parents would read her poetry out loud, our read newspapers out
loud. There was a lot of reading out loud in the house, so the morning would start with cups
of coffee, and our parents reading newspapers or reading articles, or reading poetry out
loud, and then, during the day on the weekend, we watched a lot of Lawrence Welk, and
when the Lawrence Welk hour was on, my mom and dad would waltz in the middle of the
living room to the music of Lawrence Welk.
16:02:58:18 - 16:05:14:07
Lisa: Kate and David, what kind of work did your father do?
Kate: So, our father was -- he did a number of different jobs. He was a -- he did some
construction work. He worked in a bar. He had multiple jobs at the same time to be able to
make ends meet, and he worked at Peter & Paul Candy Company for a while was a factory
worker, and Peter & Paul did layoffs, and our father then got hired at a company called
William H. Rorer, that is the pharmaceutical company that makes Maalox, so his work was
really very varied, and the most important part of it really was having enough work to do to
be able to make ends meet to be able to feed a lot of kids.
Lisa: Actually, Kate, you told me something which I thought was very lovely when we spoke
before. You mentioned your father's work at W.H. Rorer.
Kate: Yeah.
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Lisa: But he had a special letter of reference that I believe that helped him to get his job.
Kate: Yeah. Yeah, my mother is the reason that, um -- our mother is the reason -- this is a lot
harder, isn't it? So, our mother is the reason that our father got a job at William H. Rorer,
because she wrote a letter of reference, and in her letter of reference, she said to the
supervisor that they would never meet a man who would be as tenacious or work as long as
hard or be as true as Marion Fialkowski. I don't think that most people would have a letter
of reference from their wife today, but it worked. [Laughs]
16:05:14:07-16:09:04:06
Lisa: So your mother, I think, from our previous conversation -- and David I'm sorry. I
should say my previous conversation with your sister Kate, she told me a bit about your
family, but your mother was known for fighting inequity in the neighborhoods wherever
she saw it, and I'm wondering if you could tell me a bit about how she was regarded just in
the community, her own neighborhood, if you can remember.
Kate: Yeah, our mother was certainly was the person that everyone would go to if they
needed anything in the community. And I mean that a little differently. Our mother was -she was also the person who would look for things that weren't right in the community, and
so, she would notice that there's a problem, and then she would try to solve the problem. So
it worked both ways. Sometimes people would come and say, I don't know what to do, but
the reason they found out about that was because she was already doing things, you know,
so she had established a reputation that if you want something done, go see Leona, and she
would do things herself. She’d advocate for other people. She would give people
information so that they could do the advocating on their own behalf, and she was a rabblerouser, so for example, we have this one story, [Interstate]95 was directly behind the house
that we grew up in, and they had the traffic would come off the Bridge Street exit, and our
street, James Street, ran towards the exit, and they redirected the street so that the traffic
would come off of the highway and come down our street, and our street would basically be
an off-ramp. And so there were lots of problems, because there were little kids in the
neighborhood, and my mother collected all of the parents and got everybody together, and
(To David) we all sat out there, didn't we? Well, you know, it's a lot for all the Fialkowski’s
to sit out in the street, because we could block the street ourselves, and all of the neighbors
came out. Everybody had their little lawn chairs and blocked the entire street, and the news
crew came down, and you know, the police cars came down, and it was quite a big
obstruction, and it stopped traffic during rush hour, and it was a pretty big deal. So, our
mother really understood how to, through the years, she really learned how to work the
system, and what could make an impact, and if the biggest impact could come from a single
person speaking, then a single person would go to speak. But if it really took an entire
community to ban together to redirect the flow of traffic, that's what she would do.
Lisa: Literally.
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Kate: Literally, and she did a number of other things in the neighborhood. Our mother was
also responsible - on the [Interstate] 95, you know, we are sort of jumping around in time,
but the 95, when they were cleaning it, they decided to do sandblasting on the side of 95, so
lead paint and debris was coming off, and so my mom made sure that all of the houses got
tested so that they could see if there was lead poisoning in the children in the neighborhood,
and 15 kids were tested, and seven of the 15 children had lead poisoning, so she was able to
do something about it and to remediate it, essentially immediately.
Chapter Two: 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
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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.
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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.
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[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.
Chapter Three: 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
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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
12
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
13
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
14
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
15
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.
16
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
17
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.
Chapter Four: Leona’s Early Advocacy, Longfellow School, Evolution of Education in
PA
16:55:06:28
Lisa: You mentioned that parents were starting to connect and form groups, although what
you've just described, Kate, sound a little more informal. I'm wondering if your mother ever
became part of one of the more formal groups, and David, maybe you remember this as
well. Did she become part of an ark or any of those more established parents' groups.
Kate: My, um -- (To David) I keep doing that, and I apologize for doing that. I'm actually
more used to telling the story without you sitting next to me, so I'm really sorry.
So, our mother was affiliated with The Arc, but she created her on organization called the
Association of Severely Handicapped children, and -- no, that's wrong. It was the Associated
of Multi-handicapped Children, the Association of Multi-handicapped Children, and it was
created as a nonprofit organization, and as the Movement was building, there were certainly
a lot of children who had disabilities that were more easily classified, and because it had one
name, right? Tay sachs was one name for something. Downs Syndrome was one name for
something.
[David’s voice]
Kate: (To David) Is it OK for me to tell this?
So, for parents with children who had multiple disabilities, it was actually very difficult to be
able to work with professionals to work with doctors, and teen be able to get air time on any
issues because it was something that was unclassifiable, and nobody knew what to do with
it, so in a time when nobody knew what to do anyway, it was sorting like standing at the end
of the line, so other people weren't getting served, and then when they did, it started at the
more definable part of the line before it went to the end of the line, you know, so she created
this parents organization. But I think that probably the most defining, I would say that the
most defining parents' group was when you and Walter went to Longfellow, and mom
started the school at Longfellow, which was really a parents' program, and that was sort of
the big event, so a group of parents came together, again out in the light of day, into a public
school setting, and the parents worked together to be able to provide support for each other
and support for their children in this collaborative-type setting.
16:58:12:28
18
Lisa: Thank you. What you've mentioned about Longfellow is a great segue into my next
question. Correct me if I'm wrong. In '65, which again is nearly a decade before the right to
education case, your mom started to petition the school board.
Kate: Yes.
Lisa: I don't know if you remember that, David, to see if she could open a school for children
with disabilities.
Kate: She tells the story that she actually started when Walter was little, and then you know,
she just didn't have enough time to be able to make head way on that, so her really
significant start, in 1962, David was born in 1964 I was born, and so, by 1965, she knew that
her kids were done. You know, she had stopped having children, and she wanted to be able
to do something that would be in time for David to be able to go to school.
(To David) So Mommy's goal was that you would be able to do all the things that Walter had
never been able to do, and so, she started early so that you could actually get to school in
time to be at school during the typical years that kids were in school, and she figured she
had to start early, because everything took so long that maybe if she started then, she would
be able to get something going by the time that David was five or six years old.
16:59:56:22
Lisa: David, I'm sure that your mother took both you and Kate, maybe even Walter, down to
the school board when she was petitioning them or talking to them about opening a school.
Do you remember any of her interactions, either of you, with the school board or how they
received her?
Kate: Yeah. So on those trips, David and Walter were typically at home with the older kids,
and I think that it was also about the time that our sister, Mary, was moving out, so there
were older kids that were sort of out of school, you know, already able to help. I remember
going down with -- I remember going to the school board with our mom, and it was a really
painful process. First of all, we didn't have a car most of the time because our dad took the
car for work most of the time, and so to get there, we took public transportation, so this was
sort of an all-day trip to be able to go from one bus to another bus to another bus to get
down to the school board. I remember that getting down there, even with an appointment,
they would often not see her, and so we would sit there in the hall, and she would say, I'm
not leaving until I see them, because I've come all this way, and we have an appointment,
and you know, she couldn't do it, just come back tomorrow. There was no way to just come
back tomorrow. It required too much planning, and so we would sit there until somebody
would see her, and in a lot of those meetings, -- and they would have open meetings like
school board meetings, like town hall meetings, and so she would go talk at the town hall
meetings, too, and a lot of those professionals at the time didn't want to hear anything about
it, that there was nothing we can do; we don't have any money. The only obligation of the
state is for an individual to end up in an institution, and really by law, the way the code was
written, if I remember it right, a child would get seen and get classified, and by being
19
classified, there was an exclusion to any education. They would get taken off of a list, and
so, if it wasn't part of the categories that the schools were interested in, they had no time to
be able to hear about this. So, she just did it for years. She never went away, you know. It
was sort of the same thing as the string story in teaching David and Walter to walk. She just
wouldn't go away. She just kept going back day after day after day after day, and the reason
that that works is because they leave, you know. Jobs turn over. You know, so you just keep
knocking on the door until hopefully there's somebody new at the door, and they answer
the door with a hello instead of a good-bye, and then you work it, but one of the things that
she was able to do is she was really able to relate to everybody in terms of being a parent
and what would you do for your child, and if she could get someone to think about this as
their children instead of people with disabilities, you see, when people thought of people
with disabilities, they were non-people, and so, people didn't relate to children with
developmental disabilities as their own children. They related to them as non-children,
because they were the children who were put away, and they were the children who
weren't seen, and so people didn't relate to that, and I think that, you know, one of the
advantages of mom having 11 kids is that she could tell a lot of stories about children and
make it a highly relatable topic. So she had a lot to relate to, and finally, she was able to find
a guy at the school board who listened to her, and then they made lots of phone calls, and
the principal at Longfellow school said that he would take a pilot program, and it began.
And I think it's interesting. There's all that fighting and fighting and fighting, and then it just
takes a couple phone calls, and things can move, you know? But it takes all of that to lay the
groundwork for it to happen.
Lisa: David and Kate, do you remember your first day of school? Oh.
17:05:23:22
Kate: (To David) Do you remember the first day at school? I remember those first days of
school. I don't know if you do.
The first days of school, it was in the summer, and um, I think it was the summer of 1968,
around the summer of 1968, and it was in the summer because we were allowed to have
this school, but it was only a pilot program, so school was out of session, and it was July, and
the school room was up on the second floor. Our house was just down the street from the
school, so our mom had David and Walter. David was in the wagon. I don't remember if
Walter was in the wagon or walking, and we just add block to go to the school, but wasn't
we got there, it was up on the second floor, and so, David and I stayed at the bottom of the
steps, and then our mom went with Walter and helped Walter up the two flights of steps.
(To David) Do you remember that? I don't know if you remember that.
[David’s voice]
Kate: (To David) Do you want to wipe your face? Wipe your chin.
20
And so, she went up the two flights of steps with Walter, to get Walter up the two flights of
steps, and then came back down, and David was not walking then, and so she would come
back down, and she would carry David up the two flights of steps and then come back down
and get the wagon and take the wagon up two flights of steps, not two flights, but you know,
two stories, so it's actually, what's that? Two for every story, you know, so yeah, so that was
every day was sort of this the middle of July, you know, 90-plus degrees and humidity,
taking kids up to the classroom, and the first classroom was an empty classroom, and in it
were little chairs that little children sit in, little chairs and something that they call a balance
board, and the balance board was a plank of wood that sat on the floor, and that was it, and
so, it was an empty room with a bunch of parents, kids and chairs, and that was the first
school room. When I think back on it, I think, though, that it is a really remarkable thing
that I remember.
First of all, the children were all different ages, so I was four years old, and I think that the
oldest kid was 17 or 18 years old. George Michalak was the oldest kid's name. Robin
Greenstein was in the class, Nancy Greenstein's daughter, and then my brother, Walter, a
young man named wade Lee I think was his name, and a couple of other kid, and so it was a
broad range of children, different ethnic backgrounds, different colors, different everything,
different ages, different parents, and all of these parents got together in this circle and
worked with the children, and it really was a question what can these kids do? What can
these kids do? And it wasn't what can't they do, but it really was, what can they do? So it
was so experimental, and all of the children walked along the plank to see, do some children
need to learn how to walk? Do some children need to learn how to feed themselves? They
had simple things like a Maxwell House can and paperclips, and the kids in the class room
would drop the paper clips into the Maxwell House can, which seems really silly, right? But
it was about eye-hand coordination, so everything was an inquiry, how does eye-hand
coordination work, and how do people work with taking commands, and what's the social
integration aspect of this, so if I'm sitting with you doing something, will you do what I'm
doing because we are mirroring each other? And so, it was a really remarkable and
progressive setting for everybody to sit there and to learn together, and there was nothing.
It's sort of a recovering theme. There was nothing.
17:09:55:17
Lisa: How did your mother find children and parents for the school?
Kate: Yeah, I love this story because it's true. A lot of these stories are parents passing the
stories on to each other, but in Philadelphia, every neighborhood had its own little
community newspaper, so there was a newspaper called the News Gleaner, and it was a
local community paper for each of the little neighborhoods, so our news gleaner had an
article, and the article was only about three inches long, and it was a story that said, come
bring your children, and the only requirements that you have is that you can't drop them off,
but you have to stay, and you have to be willing to work, and so, parents found this little
article in the newspaper and showed up, and um, and it was just a pretty remarkable, pretty
remarkable thing.
21
17:10:59:13
Lisa: And were there any trained teachers at this school?
Kate: In the beginning, there weren't really any trained teachers. There was one teacher. I
can't remember her name, and the principal, it was during the summer, and so the principal
would come in, too. I think his name was Jerry Murrow, if I'm not mistaken, and I can't
remember the teacher's name, and um, but mostly it was the parents, because nobody really
knew, and so everybody was kind of learning and experimenting together. Through the
years, the teachers changed, and there was a teacher named Marjorie Goodwin and then a
teacher after that whose name was Mrs. Rifkind, so as the school went from a pilot program
to a real school program, then they starred bringing teachers in, and started staffing the
class and making it more official instead of an experimentation program.
17:11:56:20
Lisa: Who was developing the curricula for this program?
Kate: The parent were, so the parents sat there. Some of it was traditional. What I
remember is some of it was traditional, like you would have in kindergarten, but a lot of
these kid were teenagers, you know, so it didn't work, and so, the parents would take
something that was a kindergarten event or a kindergarten task like singing songs, and
instead of, you know, singing "Good Morning To You," the parents, I remember this, the
parents would remember like songs of their own childhood, and they each had different
songs, because these were women who came from completely different backgrounds, and
so they would sing, sometimes they would sing like a church hymn, and sometimes they
would sing a spiritual, and sometimes they would sing -- back then there were even songs
for the people who were -- slaves had their own set of music associated with them, and so it
could be songs from anything, whatever those families' backgrounds were, so the parents
would take some curriculum that wasn't appropriate and try to make it more ageappropriate and is it with the children so that it would match this range of ages that they
had between them.
17:13:33:08
Lisa: Apart from benefits to the children, it sounds like an amazing opportunity for the
parents to connect.
Kate: It was, um, I think that it was empowering. My recollection is I remember everybody
sitting in a circle, and all of the children were sit in an internal circle, and the mothers would
sit behind them in a circle when we would sing these songs, and it was so empowering
because these were parents who were living lives that were hopeless. There was no hope.
There was nobody to help. There were no resources, and you know, I don't remember any
of that feeling in the classroom. All of the feeling in the classroom was about, you know,
power and hope and what you can do. Every child who was in the classroom was
encouraged for what they could do instead of corrected for what they couldn't do, and so,
22
the parents were really there for each other. It was the most remarkable -- I don't even
know how to explain it, the emptiness of the room, and all there was, was a circle of children
and a circle of parents, and they were having a program, no chalk on the chalk boards, you
know, no equipment, no ambulaters, no nothing.
17:15:21:06
Lisa: How did the program change, or did the program change, David and Kate, when a
teacher was brought in, when more quote-unquote trained teachers were brought in?
Kate: (To David) Yeah, I don't know if -- I don't know if you remember this. I remember. I
do remember these things. Yeah.
So, when the program started getting more professional, it started falling apart, and so,
when the parents started the program, like I said, they modified everything, and they were
in a period of discovery, and they were each learning from each other, and they were
learning about the children who were there, and it really was what can we do, and the
potential was unlimited, what can we do. As the program became more mature and it
stopped being a pilot program and more professional teachers were brought in, then the
teacher was the one who was in charge and who said, this is what it is supposed -- this is the
way that it's supposed to be, and so, it moved away from this highly interactive social kind
of thing into this more, you know, third party, very more removed, you know, the
professional is more removed from it. These are the right things that we are supposed to
do, and it happened too fast, I think, retrospectively, moving from that discovery period into
the oh, this is the way we are going to do it. That was such a short time period, if it had
taken a little longer, everybody probably could have developed to it, and it could have all
developed together. Anyway, I remember very distinctly my mother was furious at what
the program had become, because the empowerment went away, the involvement went
away, and I remember this.
(To David) I remember you and Walter coming home and what you were supposed to do
was to cut out little things from a magazine and to paste these pictures in a book. That was
really ridiculous. It was just a ridiculous kind of task. I remember that David and Walter
were really struggling with fine motor skills, and they were using gross motor skills, and
they couldn't do scissors to be able to tear something out, and a picture in a magazine was
such and abstraction, so they went from, the program went from people looking at each
other and mirroring each other and hands-on working together and breaking tasks down
from one thing to another to this level of abstraction of pictures in a magazine getting cut
out so you could find things that began with the letter P, and these were children who
previously, for example, the parents had -- we used to have smocks when we were kids so
that if we were coloring we wouldn't mess up our clothes, so the parents would take these
smocks, and then they sewed on some really big buttons, and so the kids who were in the
class could learn how to dress themselves by using oversize buttons and putting the smock
on, no difficulty with sleeves, put the smock on, close the smock on, button the oversize
button, and that this was a button, you know, because you're touching the button, right? To
23
go from that to cut out a picture of a button and it starts with the letter B and let's say the
word "button," the disparity between those two things, it just really sent my mother over
the edge.
(To David) So, um, so she fought very hard get you and Walter in Longfellow, and then she
won, and she promptly took you out. So, I don't know.
17:19:51:22
Lisa: And where did you go to school, David, when your mom took you out of Longfellow?
Kate: (To David) After you went to Longfellow, so part of your, you know, part of your story
is, after you went to Longfellow, you then went to the boys club to go to school, and so you
still sat in another classroom with some kids at the boys club, where some of the parents
continued to figure out, how does this work, and to give you the education they thought that
you needed so that you would gain in independence, and both you and Walter were in that
program. Were you both over in Bridesburg, in the boys club in Bridesburg.
17:20:43:17
Lisa: You think professionals at this point, Kate and David, were beginning to realize that
parents had the expertise when it came to teaching their children?
Kate: Um, there were different kinds of professionals, so there were the school teachers and
the school district, and they did not, because for the school teachers and the school district,
they didn't want children with disabilities in the school or in the classroom at all. I mean,
you know, the school system fought that tooth and nail. But what started at this time is
there were others who were professionals in the field, and they were researchers, so people
like Lou Brown from Wisconsin, he had a young man with him. His name was Ian [?] who
came out, so there was whole cadre of other professionals from around the country, who
started coming into Pennsylvania as the court cases were being developed, and so these
researchers came and said, we are not sure. They were researchers, so they had hypothesis,
and they wanted to prove this as a research methodology. Can children with disabilities
learn? Can children with significant disabilities learn? Can children with multiple
disabilities have compensating techniques to be able to get around those multiple
disabilities, and can they learn?
Because, the professionals in the school system said the answer is no. Don't bother. They
said, this is as good as it gets. You know, forget about it. Children have a mental age limit,
and they would get, you know, not just labeled with a word, but they would get labeled with
an age, you know. He has the comprehension of a one and a half-year-old. He has the
comprehension of a four-year-old, and so individuals would get a mental age put on them,
and when they got the mental age put on them, it meant that's the end, that's as good as it
gets. That's all you're ever going to be, so and so if you have a mental age of one and a half
years old, then we are going to continue to treat you like you are one and a half years old,
and that's all there is. And then when the professional researchers came, they said, I don't
24
know. Is that true? I don't know if that's true. Let's prove this, or let's disprove this, and
let's sit, and let's be open to what it could be, and those professionals came from around the
country, and they sat down with the parents, and they said, let's try these things. Let's
experiment with these things. We had professionals come to our house, and I remember
sitting there think, this is the most ridiculous stuff I've ever seen. They would come with
bicycle gears to see if David and Walter could take the gears apart and manipulate the gears
and put the pieces back together, and I'm like, of course not, and my mother would look at
me, and she would say, how do you know? And I would say, well, and then she would say,
David wasn't walking at the time. She said, but you can't ever give up hope, you know. Of
course, retrospectively, after I saw David walk, I thought, bring those gear boxes back here
again. Let's give that a try again. You know.
17:24:45:07
Lisa: So, your mom had started, David, and Kate, the Longfellow school, and she started a
second school at the boys club. There was a point where the two schools were compared,
maybe by some of the professionals.
Kate: Yes, they were.
Lisa: And what did they find when they compared the two programs, the more formal, and
then the more intuitive and experimental program that your mom had created?
17:31:43:20
Kate: I remember going to the boys club program, so you know, a little story about the boys
club program. First it wasn't in a classroom anymore because it was in a boys club, and it
really was boys club back then. They had boys clubs separate from girls clubs. One of the
think about the boys club program is that there were boys in the club, and so oddly enough,
it was something that was even more inclusive, because the parents could get the space for
free, and they could use it, and then some of the kids would actually be playing ball or
whatever at the boys club. So it was sort of an inclusive space. The parents were still
working very closely with the kids, and the parents had started doing these -- again, they
were still sort of experimenting, so I remember that there was this big doll. I can't
remember the name of the doll, and she was about -- she was taller than me, this doll was
taller than me. I was little, so she seemed enormous, and so one of the things that the
parents did was they had recorded conversations on a tape player, a cassette player, and so
they recorded it and then put it behind the doll to see if children would interface with the
doll in the way that they would interface with other people, and so you know, it just
continued that there was this sort of experimentation for the parents to have typical
behavior, socialization skills, how do you do socialization skills, life skills, independent
skills, and this was really important, because again, the kids were old. These weren't -- we
weren't starting the classroom with all kids that were two years old or three years old or
four years old. These were kids who were like Walter. They were grown -- they were
getting ready to go out on their own. They were supposed to grow up, you know, so this
25
program at the boys club remained very experimental in that way, and the whole emphasis
was on this typicality, how do you make something that is typical, typical social norms,
typical independence, typical things.
(To David) I'm boring you. Am I boring you? [Laughs]
and the other program became sort of like a school book program. Here's the curriculum.
I'm going to send the curriculum home. The parents can do this curriculum at home, and it's
very separate, and what the professionals said as these research professionals as they
reviewed it is that the parents in the one school room, then, started keeping the children
like children, that one of the aspects of it was this sort of age thing, you know, when you got
a label as an age, now let's keep treating you like you are that age, and so they were hugging
the children and kissing the children and patting the children as if they were infants, and
one of the differences in the other school is they were sort of trying to figure out what is
age-appropriate behavior, and how do we operate with age-appropriate behavior, so the
little kids were getting little kid stuff, and the bigger kids were getting teenage kinds of
things. So how do we do that. So, you know, some of the results of the professionals were
that one classroom, the parents' classroom, age-appropriate, hands-on, parents highly
involve, highly engaged and everybody sort of learning from each other. in the traditional
classroom, rigid curriculum, levels of abstraction in the course material, age-inappropriate
behavior, in the non-traditional classroom, the parents were figuring out, how do we break
things down into steps, so if you have to button your coat, you know, put the coat on fine put
your arms through the sleeves, step by step by step by step, you know, pull the coat over,
close the coat, button the coat, and so the parents were breaking all the tasks down into step
by step to see where the individual child was having difficulty and to be able to help them
through the difficulty but not let the difficulty become a barrier to the task, right?
Traditional classroom end goals without breaking things down, no consistency in breaking
them down and sort of sporadic attention on each of the children, and so, and it's one of the
battles that we have in today's classrooms. Should there be this one on one? Do you have
one on one, at what point, and how much one on one do you need, vs. one teacher to a bunch
of students, how do you manage that, because there isn't the money to do all of that one on
one, and the parents' answer was that's OK, have a teacher, and have a teacher show us, and
and we'll come, and we'll spend some hours, and we will supplement the classroom. You
can tell I have a preference of which classroom.
Also, I have to tell you, it was very cool to be hanging out at the boys club. I was a girl. It
was great. You know, this was the '60s. Everything was kept separated in the '60s.
17:31:41:02
Lisa: So, I mentioned earlier, that your mom was doing this year's before the Right to
Education case. In fact, in the 1970s, she testified before Congress. I don't know if you both
remember that, urging them to pass legislation guaranteeing that not only local kids, but
kids across the country would have access to education. So, why do you think your mom
was so far ahead of all the advocates, and all the other parents' organizations?
26
Kate: (To David) Good Job. Thank you. Good Job.
17:32:32:10
Lisa: So, why do you think your mom was so far ahead of her time on the right to education?
Kate: Um, you know, I think part of it is that she had so many kids, so you know, she saw the
whole spectrum, right, of all the kids, like all these kids are going to school, right? And she
also had the unique difference of the age difference between David and Walter, and so she
had always said that Walter showed her the way with David. So, I think a lot of parents that
I've met, they can see where their child is at this moment but have difficulty seeing that
future for them, and so they're sort of dealing with the moment. Her perspective was,
though, that she got to see Walter, and she could already see where Walter was headed, and
that there were no opportunities, and so knee knew that she had to fight for David to be
able to able to get those opportunities, and so I think it's a really unique attribute.
(To David) The age difference between you and Walter became the solution for the two of
you, because Mommy could see the difference, and wanted your future to be different than
the future that Walter would have.
Most parents don't have that perspective, because they don't have that age perspective.
17:34:06:05
Lisa: Thank you. In '72, PARC, the Pennsylvania Association for Retarded Children as it was
known then, successfully brought the Right to Education case, and Pennsylvania had 12
months to find and serve children with disabilities who hadn't been served or had been
underserved by the education system. I believe Walter, David, your brother Walter was
maybe too old at this pointing to to public school; that correct?
Kate: He still was in Longfellow.
17:34:06:04
Lisa: Oh, he still was in Longfellow, so I take that back. Let me ask, then, if with the passing
of the Right to Education if David and Walter were able to join their neighborhood public
school.
Kate: Yeah, that was actually it was part of the many battles in the public school. It was one
of the many battles that Mommy had was the switch-over, the program, the original
program was in Longfellow. One of the things that was happening at this time in the
country was racial integration was happening concurrently, and so the reason that the pilot
program happened in Longfellow was that Longfellow was a school that was emptying out.
There were hardly any kids in it. There were hardly any classrooms in it, and so there was
room for this classroom.
And so one of the things that happened is they wanted to as the Right to Education was
happening, busing started happening, and so they wanted to empty Longfellow the rest of
27
the way out so that they could bus kids into Longfellow. Now, so, this was a program, the
program for, one, what was called the multiply-handicapped children, the program for the
multiply- handicapped children. The aspect of it was a community program, and all these
parents came to it, and um, you know, we could walk there. It was a block, but part of this,
part of what was changing was the new program and the right to education, the classroom
was moved to Sullivan, which was where the rest of the neighborhood and everybody was
going for elementary school, and so the Longfellow program was being shut down and being
move to Sullivan, so sort of tied up in the middle of this was, is the Longfellow program
appropriate anyway, and the Longfellow program was going to get moved to Sullivan, so
both of those things were happening at the same time.
So, anyway with the Right to Education, she had pulled David and Walter out of the
program. They had the situation at the boys club. There was a court case about why did she
pull them out of this school, and she was getting sued, and she was suing the school system.
They were yelling at her because the kids should be in school because we won the Right to
Education, so why weren't they in school, and she was saying, what is an education? And so,
that really was the pivotal time where PARC was about the right to education, but the real
question was what is education? What's the definition of education? Does everybody really
have a right to learn, and do we really expect for every single person that they have a
capacity to grow and to become something and to add value, and that was really sort of
more of the value pivot point for PARC rather than the very first origin of PARC.
Chapter Five: Inclusion in Public Schools
Lisa: David and Kate, you were saying that your mom worked so hard to get David and
Walter and other kids with disabilities into school and was being sued because she took
them out of school, all because she was really looking for what was an appropriate
education.
Kate: Yeah.
Lisa: But eventually, Walter and David did go to the neighborhood public schools, is that
right?
17:38:44:20-17-17:38:51:27
Kate: They did. They went to Sullivan, which was the neighborhood school.
Lisa: And how did that come to be? I'm curious. How did the lawsuit resolve itself, and was
your mother comfortable with sending Walter and David?
17:39:01:15- 17:44:21:10
Kate: No, not at all. She wasn't comfortable. So during this whole period of time, the
question was still, you know, the question was still ‘what is an education’, so you have a
28
right to what, exactly. And so, when David and Walter went to Sullivan, I was going to
Sullivan at the time, so David and Walter were in Sullivan, and the beginning of the right to
education meant that instead of individuals being warehoused in institutions, smaller
groups of individuals were being warehoused in classrooms, and the classrooms were often
in closet in some cases, depending on how many students there were, in basements, in
boiler rooms, in, you know, abandoned parts of buildings. It wasn't -- it wasn't that children
were really integrated into the schools. It's that classroom space was provided. When we
were in Longfellow, the pilot program had developed to such a state that there were groups
of individuals like the women's auxiliary of Frankfurt Arsenal, and Dr. Concors, our doctor,
for example, people gave money, and the money bought the equipment, and so the
classroom in Longfellow was full of equipment. There were balancing boards, and like you
have eventually in physical therapy where steps that go up and steps that come down, and
David a walker that he walked in that was sort of this metal cage that went around him, and
he stood in the center of it, and it had wheels, and he moved around with it. In Sullivan, we
were back to classrooms that basically had nothing at all, and so, part of the question was,
what are kids doing all day long?
So I can remember my parents sending me during school, I had to sneak out of the
classroom for frequent bathroom breaks so that I could go figure out where were David and
Walter, and what was happening to them. So for parents who won this right to education, it
was actually a really scary thing, because they weren't in the classroom with the kids
anymore, and these children whom everybody considered vulnerable were now put in
situations for what purposes? And who was around them? And what was happening? And
where were they? And what was going on all day? So those beginning school rooms
consisted of kids who were tied into the chairs so that they wouldn't get up and move or get
hurt or do anything, and so,
(To David) I remember one report on you David said that you were much more adaptable
than Walter was, and it said that you were more adaptable than Walter because you learned
to sit still in the classroom, and Walter wouldn't sit still in the classroom. Well, Walter was a
teenager, and I don't know any teenagers who do that, and
So it was just kind of an interesting thing that a good student was a quiet student, and a
good student in the classrooms were the students who just sat still, and if there was any risk
of them getting up, like I said, sometimes they were tied into a chair. So, what parents were
asking, then, what the heck is this all about? You know, is this really what we were fighting
for? Is this the Education that we were fighting for? Is this showing the capabilities? And
this was part of the researchers coming and answering the question, can children with
significant disabilities learn? Can children with significant disabilities grow? Is there hope
for the future, or do we plateau at the mental age of one and a half years, and that's it? And
so, that's what it was like.
The other thing that happened in the first school, certainly I saw it in Sullivan, David and
Walters classes were moved. As the children came in, they would come in later than other
kids and leave before other kids, and then during the breaks, they would take breaks at
29
different times than the other kids, and so this was not mainstreaming when people talking
about mainstreaming, this wasn't mainstreaming. This was before mainstreaming where
everything was still really, really secluded.
Lisa: So given the variance in the drop-off and pick-up times for kids with disabilities at this
school, and you referred to the bathroom breaks you would have to take to kind of check in
on your brother's classroom and see what was going on, was there ever any opportunity in
the school for you to interact with David and Walter?
17:44:42:15-17:47:58:13
Kate: No. They were moved -- both David and Walter like I said were moved in a way that
there was no movement of the classroom with the general population moving. It happened
at different times. I only remember one time that it happened, and I was really unprepared
for it, and Sullivan is a school with a very long -- it's like a peninsula. The school yard has
sort of a peninsula in it, and I was down at the end of the peninsula, and David and Walter,
the class was going through the school yard to move someplace else in the school, and they
were going through the school yard, and all of the children started chanting about the
retards that were moving through the school room and through the school yard, and it
wasn't observational. It wasn't just observational. All the kids stopped.
(To David) Do you remember this? So, all the kids, you and Walter were walking across the
school yard, and all the kids stopped and started yelling and yelling and yelling at you, and it
was really shocking to me, because that was the first time that I really, like it was the first
time that I really understood the discrimination aspect of it.
I sort of understood things that were happening in the meetings that mom was going to
these meetings, but it was the first time, because every other time I was with David and
Walter, and so this was the first time where I was like standing on the other side with
everybody else, you know, so I was over here with them with-the rest of the kids, and I was
behind the wall of kids, and all the kids were facing David and Walter, and it was really
shocking what that all looked like from that point of view, and I was so scared, and I didn't
even know what to do. Like, what would those kids do to me if they found out, you know.
What would happen to me, because they were being so mean, what would happen with all
of this, and then before I could get through to the other side, David and Walter had gone into
the school, and it was over, but it was really lasting impression of, you know, what do, what
do my peers think of this, because you know, I thought have been had a disability, so all my
peers had disabilities, so I never thought about it that way, and it was my first perspective
looking, and the other side, kids moving quietly from classroom to classroom, and you were
excluded from the playground, and excluded from the swing set, and excluded from all of
the regular programs, and excluded from the cafeteria, from everything. It was pretty
harsh.
Lisa: David, do you remember any other time in your life where you were teased that way or
you felt discriminated against in a similar way?
30
17:48:14:10-17:50:37:02
Kate: (To David) Do you remember sitting on the porch? Sitting on the porch with Walter
and really, in the summer, to get out of the house? Because we could go out and play, but
David and Walter couldn't go out and play, and you and Walter with sitting on the porch
with Louie, our dog, and kid would go by, and they would holler at David and Walter, and
they would throw things at David and Walter, and we had a very nice dog that learned to be
a very vicious dog, and so the dog would stand at the top of the steps, and if anybody came
up, I think that the dog would have killed them, because the dog could see the aggression,
and so people would go down the street, and they would throw things at you. It was kind of
interesting, though, because it sort of changed. Like the kids -- it ended up that the kids who
knew us and knew our family, they didn't even -- I don't remember them saying anything
about it, and so it was usually kids who didn't know who were really mean, and then once
people understood, you know, learned our family and anything, it just was not even an
issue. I don't know that it was accepted, but nobody talked about it or anything.
I can tell you, it was really hard to keep it a secret, because we were in the news all the time.
So, you know, there were dozens of front page articles where you know, as the court cases
were developing, we had news crews at the house all of the time, and you know, I couldn't
exactly fly under the wire with this, and you know, and I think then all of the kids that we
went to school with sort of learned that we were affiliated, so they never said anything in
front of me. I don't know what would have happened if they did. So I think we are probably
glad that didn't pan out.
Lisa: Did you feel different from other kids because you were a sibling of brothers with
disabilities?
17:50:44:01-17:51:02:07
Kate: No, I felt different from other kids because we had 11 kids. So -- [laughing] we weren't
exactly typical I think.
Lisa: You told me a story that I think is really interesting. I wonder if you would share it,
David, if you would allow me to ask your sister [to tell] the story. You had mentioned
busing earlier on in our conversation, and the fact that the Sullivan school was maybe not as
close to your house as Longfellow had been.
Kate: Yeah.
Lisa: And then it was a long walk, and that walk was probably difficult for your brothers to
do and your mom to change.
17:51:33:00-17:53:15:27
Kate: Well, actually, as the court cases were going on, there were a number of periods of
time where my parents were offered things so that if they received these benefits, that
hopefully they would stop, and so, one of the benefits that they were offered was that there
31
would be a cool bus that would come and take David to school, and so, there were these
negotiations that happened with the school and with the school district to try to ameliorate
the litigious dispute that was ensuing, and so the school bus was a bribe, and so my mother
accepted the school bus, that she accepted the school bus so that all the kids in the
neighborhood would be able to be on a bus, except me. I was not able to be on the school
bus. I still had to walk because my mother accepted the school bus for other kids, and then
she continued to have the dispute with the school systems, and so it really did not do any
good as a negotiating tactic, but she got busing for the rest of the -- you know, it would have
been bad if she had me ride the school bus and she still fought them. So this way I got to
walk.
(To David) All the other kids got to ride the school bus, including you. You got to ride the
school bus as well, and I still had to walk for blocks and blocks to school every day. You're
welcome.
Lisa: You mentioned litigation, and one of the things that your mother was involved in,
David and Kate, is really advocating for life skills to be part of the school curriculum, and I
wonder if could you tell me a little bit about why that was so important to your mom.
17:53:37:14-17:56:37:17
Kate: Life skills were important to the curriculum because as I mentioned, the original class
had individuals of various ages, and so the question was how do people have some degree of
independence, what's going to happen, and what's going to happen if something happens to
their parents, and is the only course really course to be institutionalized, and so for my
mother, the most important thing was that everybody had a right to live in the community.
It wasn't just the education, you know, so she was already, already conceiving of what a full
life should be, what a full lifespan should look like, and so it was a means to an end that
individuals who hadn't done anything for themselves, who maybe had been in the house.
They couldn't necessarily get down to the basement to do the laundry, you know. The
houses were inaccessible. They were row houses. But education really meant what is it for
you to learn and grow, and what do you need to learn and grow, that the purpose of my
mother would say the purpose of education was to teach you to be a citizen. That's what we
used to think in the olden days, because we used to have citizenship classes and things like
that, and so it was to teach you to be a contributing citizen of society, so life skills were an
important attribute to being a citizen including in society that, you could do some things
and take care of some things for yourself, and not cut things out of magazines and stick
them on paper, and part of it was also that as the students grew up and started getting
older, then they started progressing to other schools. So in Sullivan, the question was
toileting basics, how do you go to the bathroom, what are the steps to going to the
bathroom. You turn on the light. You wash your hands. You have to wash your hands when
you leave the bathroom. You turn off the light. All the dressing skills that are involved in
this, and so in elementary school, a lot of your class last really around, supposed to be
around those kinds of life skills. Later, as the classroom moved to junior high, and there's
home evening classes, are there stoves, are there ovens, are there kitchens? Are we really in
32
an environment that's assimilating a regular home, and how do we have the skills just as we
used to have, you know, have cooking classes and home-ec classes, that the life skills were
being taught to in traditional classrooms, so those same things should also be taught in
these classrooms. A level of expectation of being a contributing member of society.
Lisa: Do you think the Pennhurst litigation and ultimately the closing of Pennhurst
underscored the needs for those kinds of classes?
17:56:47:10-17:57:57:22
Kate: I think that Pennhurst underscored everything for parents of that generation and that
our mom was really no different. I think parents woke up every day scared to death about
what would happen when they were gone, and every single breath that they took, and every
single thing that they did was to give their child the best possible outcome when they died,
and so what would a measure of independence look like.
I know that, um, for my mom, she thought that David and Walter, at one point she thought
David and Walter would end up in Pennhurst institution, because the class-action suit
hadn't started or anything, and that she thought that's what would happen when she died,
and so she fought every single day that that would not be an outcome, that it just was not an
acceptable outcome.
Lisa: Thank you. David and Kate, your dad retired in 1976.
17:58:07:25-17:58:10:22
Kate: We are only up to 1976!
Lisa: I know, only up to '76.
Kate: That's like one year every 40 minutes.
Lisa: It probably takes even longer to really tell a year.
Kate: Yeah.
Chapter Six: 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?
33
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
34
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.
35
[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
36
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
37
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
38
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,
39
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
40
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
41
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.
Visionary Voices Interview
David and Kate Fialkowski (Part 2)
July 5, 2012
Chapter Seven: Leona and Work for Pennhurst Special Master, Walter in Community,
Leona Resigns from Woodhaven Board
Lisa: We are continuing the interview with David and Kate Fialkowski here at Temple
University here on July 5th, 2012, and also present is our videographer, Aggie Ebrahimi
Bazaz, and David and Kate, do I have your permission to continue our interview?
Kate: Yes. Yes. (To David) Yes?
[David yawns]
Kate: That’s what it felt last time. [Laughter]
42
Lisa: Thanks. So, David and Kate, when we were talking last time, we sort of finished our
first interview talking about your brother, Walter, and his experience at Woodhaven, and
we were speaking with you and Walter went to live at Wood haven 1977. I actually want to
ask you a little bit more about that in a bit, but I know that soon after Walter moved to
Woodhaven, your mother, Leona Fialkowski, took her first paid job.
18:37:22:25-18:37:44:04
Kate: Yeah. In 1978, our mom took a job with the office of the Special Master, and she was
apparently liaison, and her job was to help parents with the transition for their kids who
were living in Pennhurst, so it was part of the Pennhurst dispersal.
Lisa: And why do you think she wanted that job?
18:37:50:00-18::39:07:00
Kate: Yeah, that job was really important, because you know, I mentioned the story before
about how everyone had no alternatives, you know, parents didn't have any alternatives, so
when they had children with developmental disabilities they were told to put them in
institutions like Pennhurst, and so the Pennhurst dispersal really marked the beginning of a
movement out of institutions and into community living.
There were really two phases of that, so the first phase was the Right to Education. That
was the first phase so that children who were born would be able to immediately go into
schools and have an education, and then, the second part was to move people from the
institutions out into the community.
[David’s Voice]
Kate: (To David) Yeah. You can participate. You can answer some of the questions. OK?
Ready for the next one?
Lisa: Maybe David you can tell me if you remember what it was like at home when your
mom actually went out to work. Did things change at home?
18:39:18:09-18:40:52:00
Kate: (To David) Do you remember Mommy going to work and staying home with Daddy? It
was -- I think that it's probably the period that our brothers and sisters are most jealous
about, because it was the first time that we had a, you know, additional income, so we had
two things.
We had additional income and fewer kids, you know, fewer mouths to feed, so it was a
pretty stellar time from a financial perspective. It felt like real boon years, and it was
different though, because our dad was certainly used to being the breadwinner in the
family, and by this time he had already retired, so he had been living at home for a couple of
years. He retired in 1976, and so it was sort of a juxtaposition that our mom was going out
43
to work and dad was staying at home, so that was a little -- that was sort of a little odd, and
you know, little family story. The worst part of it was that our dad decided that he would
start cooking and experimenting, and he mostly cooked by color, so he picked things that he
thought would go well together based on their colors, including the seasonings that he put
in there. So, while our brothers and sisters think that those were the boon years for us,
really, they were very sad years from a food perspective. So.
Lisa: Do you remember any of his culinary masterpieces.
Kate: I tried not too. It's one of those traumatizing events of our childhood.
Lisa: So, David and Kate, your parents had sent Walter to Woodhaven, because as he was
reaching adulthood and transitioning from public school to private life, there real write
virtually no community supports, no supports for community living in Philadelphia at the
time. You had mentioned earlier, Kate, that Woodhaven was meant to be a place that
trained professionals that brought great thinkers together to learn about best practices in
the field and help transition people into the community, especially people with significant
disabilities. Can you tell me a little bit about your mothers efforts or maybe both of your
parents' efforts to move Walter from Woodhaven into a community living arrangement?
18:41:51:11-18:43:15:26
18:43:42:15- 18:45:41:02
Kate: Um, I don't remember much about that experience. I mean, I remember obviously I
remember quite a lot about Woodhaven, and also how Woodhaven was really meant to be
sort of a short-term stay, more like a halfway point to help people reintegrate back into the
community. What I do remember though is there was a real barrier for individuals with
more significant disabilities to live in community living arrangements, so there were
community living arrangements that had starred, but there weren't really any community
living arrangements for people with more significant and multiple disabilities, and so, it was
really pretty substantial when my mom was able to raining for Walter to move into one of
those houses, and it was almost seen like a demonstration to be able to show that
individuals with very significant disabilities could live in the community, and it's fascinating,
because even today, I've gone around the country and seen some different family situations,
and even today, many people will say that you don't understand my child has very
significant disabilities, and so the only place that they can live is in an institution, and I can
certainly say that my brothers, David and Walter, both had very significant disabilities, and
both of them have done very well living in community arrangements. Probably done even
better because of the amount of social interaction, and even family participating more in the
process because it's more like a natural house and a natural home and natural family
members.
Lisa: Can you tell me a little bit more by what you mean about a natural house and natural
supports, and maybe what life was like for your brother Walter?
44
18:45:45:20-18:46:46:05
Kate: Yeah, so when Walter moved into his home, I'm trying to remember how many people
were living in his house. I want to say that there were about four or five -- I could be
mistaken, and it was pretty close to our family, so our parents could go over there all the
time and still visit all the time. There weren't any particular visitation hours, so it was more
like somebody living in a house, you know. You could go to the house. You could call. You
could say hey, I want to stop by, and so it functioned like a house, and the people who were
living in the house functioned like a family unit, and so it was just it was so much more
comfortable to be able to go there and participate there than it was to go to the, you know,
to go to Woodhaven.
18:46:53:01
Lisa: David, do you remember if Walter was happy living in his house?
Kate: Walter was more happy living in his house than he was living in Woodhaven. Um,
that’s sort of a qualified answer because he still wasn’t home. And so it took awhile to begin
adjusting. But because it was more like a natural house, Walter was adjusting to that as a
house. You know, he was able to do things with the people who lived there. It certainly has
a more natural – it had a more natural routine associated with it, and so yeah, it felt more
like a home, you know, and I could tell that Walter was pretty happy there.
18:47:59:07
Lisa: David and Kate, you mother served on Woodhaven’s Board of Trustees for many years,
but in 1984 she resigned from the Board. She wrote a letter to Gov. Thornburgh and wrote,
“In recent months, its become clear that the Woodhaven goal will not be achieved, in fact,
the goal has been abandoned. I have no desire to be a Trustee of a non-habilitative
organization that offers no hope to its residents, other than continued institutionalization”.
Those are pretty strong words, that she wrote. What brought her to that point, the point
where she decided that she needed to resign at that Woodhaven wasn’t meeting its goals?
Kate: Yes, so, um, she really felt betrayed by the process at Woodhaven. So the intent was
that it really would become first a transitional place, a temporary place for people to go and
that it was really supposed to set up a model of community living, and be a stepping stone
toward community living.
[David’s voice]
Kate (To David): You can add something. Do you remember? It was supposed to be a
stepping stone to community living. But it didn’t turn out that way at all, and then once
people got to Woodhaven, they just stayed in Woodhaven. And so Mom felt really betrayed
because she was really opposed strongly, vehemently, as an activist, opposed to
institutionalization, and here she was on the Board of Trustees of an institution. And so she
felt a little duped by the process, that now she had moved to the other side, if you will. So it
45
was really a very difficult time, and certainly difficult for her to give up hope of what she
thought Woodhaven would be – that it really would teach the best minds, that it really
would create the new community options, it would be very progressive, and instead it
ended up having a lot of new furniture trying some things out but ultimately people were
meant to stay there. And that was a real problem.
18:50:26:14
Lisa: David, I wanted to talk about you for a moment if we could. I wanted to ask you David
about being in high school. And I wanted to ask you when you graduated, and what that was
like.
Kate (To David): Do you remember your high school graduation? I’m not sure I remember
your high school graduation. Um, you graduated when you were 25 years old. So I’m not
exactly sure what year that was. And, um, and you were 25 years old when you graduated
instead of 21 because, um, because, because of the PARC court case. And there was a part of
it where the families actually went back and sues the state again because the state wasn’t
actually implementing the Consent Decree, and so individuals, it was found that individuals
who were supposed to get an education had not gotten the education that was deemed their
due, and so many of the individuals like David, who were In the process got an extended
education so that instead of leaving at 21, they were able to stay there until they were 25.
So you went to high school until you were 25, and then you graduated.
[David’s voice]
18:52:09:27
Lisa: And David, what did you do after you graduated high school?
Kate (to David): Do you remember those years? Those long years?
So those years, most families call that the ‘cliff’. So this is called the cliff. After the
Entitlement program is over then there’s no Entitlement left, and so individuals leave school
and they don’t have any family supports, and day supports, any employment or any other
programs and so that’s the period where individuals sit home. So for David, for example,
there were things that were pluses and minuses, about school.
(To David) For example, before you went to school you spoke, quite a lot.
So David had a small vocabulary. He had words in his vocabulary he could ask for specific
things. It’s a lot of vocabulary to just know our names because there are so many of us.
And, um, so one of the things that happened through the educational process is that David
lost his vocabulary. And this happened because, you know imagine if there are ten kids, and
every time a kid goes by they say “Hi, David”, and “Good morning, David”, “How are you,
David?”. You know, ten kids and two parents are an awful lot of people to be saying hello to
you all day long, to be talking to you all day long and, obviously, there is no school in the
world that could compensate for that level of communication, right? But there were great
46
things about school once things started changing, and for David, you had programs that
really helped you with daily living skills, um, you started moving from the back room into
areas that were more part of the classroom, having lunch with other students. And one of
the things that’s really fascinating about David’s life story is that his life story is really the
entire life story of the Movement, right, from the beginning to end. From the Right to
Education, through the teachers’ part of the Education, through to it becoming an
Entitlement, and then, you know, onward. So, so the education was really fascinating. After
the Education there was nothing, and, um,
(To David) Daddy had retired by then, and Mommy was at home, you were at home, and the
three of you were at home all alone together for a long time. For a really long time.
18:55:09:09
Lisa: I’m probably going to skip ahead, but I think it’s a good segue, I know that your
parents, David and Kate, were part of a class action suit brought by the Goode
Administration (Wilson Goode was the Mayor of Philadelphia at that time), to ask the state
to pay an additional 7 million dollars in services to avoid people with disabilities falling off
that cliff. Can you tell me a little more about that class action, and how it was resolved?
Kate: No, that one I can’t. So, um, I graduated from high school in 1982, and then, so, in
1982 I moved to Ohio, and so then I wasn’t really in the house from that point on, for the
latter years. And so you know it was interesting because I went back and, um, I had my
mom’s papers and it was really fascinating. I started laying them all out – a year, a year, a
year at a time. I started laying out all her papers out in a row and I realized that she had
been in some sort of court case for over 20 years. And so it really was this entire lifespan,
from the late ‘60s all the way up to the mid ‘80s, on just resolving issues related to, um,
related to the educational system, and through transitioning through that post-educational
phase. Twenty years.
David’s Voice
Kate (to David): Twenty years. Your entire life.
David’s Voice
Lisa: David and Kate. If its…
David’s voice
Kate (to David): Yeah? Do you want to sit up? You can sit up. Here you go.
Chapter Eight: Walter’s Death, Finding a Path for David
18:57:37:18
47
Lisa: I wanted to ask you both, David and Kate, about something that I know is more
difficult. IN 1986, I believe, your family experienced the tragic loss of your brother Walter.
And I wondered if you could tell me a little about the circumstances around his death?
Kate: Yeah, that’s really difficult. So, um, Walter was living in his house in a community
living arrangement, he was living in his house, and, um, he choked on a peanut butter
sandwich. So I remember – I was living in California at the time – and I had just moved
there for a job. And my mom called on the phone, and we spoke all the time, and I could tell
that her voice was different. And, um, all she said was, “Walter’s dead”. And I just, like, I
couldn’t, it didn’t sink in – what did that mean? That’s not possible because Walter was so
young, you know, he was in his thirties. And she said, “Walter’s dead. You have to come
home, Walter’s dead”. And so, um, he was living in a house and he went into the kitchen and
there were peanut butter sandwiches on the countertop and he took the peanut butter
sandwiches and he shoved the peanut butter sandwiches in his mouth, and then he choked
to death and died.
Um, so there were a couple of attributes about this. First of all, both David and Walter have
a particular difficulty swallowing; they don’t have a gag reflex. And so the gag reflex for all
of us is something that, um, will prohibit you from choking because you will start to gag and
you won’t choke. So they don’t have a gag reflex like we do. And the other thing is that, I
don’t know what the technical term for it is but they just used to call it shoveling, so if
someone would want to just consume things, and put a lot of things, and so if Walter
something that he found really tasty, he would try to eat a bunch of it before anyone else
could find out that he was doing that, and, um, so that’s what happened. It was a major,
traumatic event for the family. It was a major, major family event.
19:00:25:19
Lisa: Did you find that the staff of the house or the provider agency that served Walter took
responsibility?
Kate: There was no responsibility for it. No one took responsibility for it. They said that,
basically, Walter killed himself. He went into the kitchen and he initiated eating the
sandwich. He ate the sandwich and so he choked to death of his own accord. Um, so that
was, you know, that was pretty difficult, and its hard, um, you know. Our mother was always
on the edge of things, you know, so she kept pushing the line forward in terms of what was
right, and that these things were right, and that all people should be able to be in the
community and that all people should be able to be at home and that all people should live
in a house and have that kind of environment, and all people should be able to have
employment, for example. And so she, she really pushed everything forward like that. And
so in some ways Walter was collateral damage. And throughout the process, through the
school system, through the deinstitutionalization phase, all the way up until the community
living phase, it was really Walter who was really on that front edge of the wave, of the
changes happening. And so when he was doing things, the system wasn’t really ready for
him – he was the first man out.
48
Now there were a lot of changes, of course, after that. There were new regulations that
were put in place, new quality control methods, there were no significant quality processes
up until that time because everything was still new. And certainly the regulations helped
other people in other houses. But it was too late for Walter.
(To David): And um, Mommy used to always say, that everything that happened for Walter
was there for a reason, and the reason was you. And that everything that happened to him
was that so you would end up having more of a life and that you would be safe. And, um, she
really believed that, she really believed that.
Lisa: So, Kate, you had mentioned that your mom's thought was that everything that Walter
experienced in many ways paved the way for David, for your future and for your successful
life from the community. So, David, since we are in a way talking about you, I wondered if
as your parents got older they were planning for your future, and Kate was there any
expectation on your part or theirs that David might live with you or one of your siblings?
19:04:11:26- 19:08:10:22
Kate: Um, we talked about it. We had a conversation. It was an expectation that I had. It
wasn't an expectation that they had. So, at the time I was married, and I came home and
talked to my mom and dad about what was going to happen with David. We had the
conversation because our parents really were getting much older, and this was something
that they were trying to figure out and that they were actively planning for, and so, they
were having conversations about what if and what happens when, so I came home one day,
and I said I had the answer. There was no problem with this, because you know, as soon as
it was time, then David would come and live with us, and that seemed like the really logical,
obvious conclusion, that you would end up living with Tom and I, and Tom was a really
terrific guy, and it would have worked out, I thought, perfectly. So, but our parents certainly
had a different idea, and their perspective, right, their perspective was absolutely not, and
that David had a right to his own life, and that I had a right to my own life, and that they
didn't want that to be my life, that they didn't want my life to be all about taking care of
David, and I couldn't understand it. There were a lot of things at the time that I just couldn't
understand, and this was one of them. Why wouldn't they want that? It seemed so
obviously me, and then later, through additional conversations, and certainly in more
frequently, I more recently, I realized that caregivers have a really hard life.
It's really a hard path. Typically, one of the individuals ends up being a stay at home person.
There's typically only one of the individuals that can have a job because of all of the care
giving requirements that our earning potential probably would have been half of what it
was, that for example, in my career, I've ended up traveling around the world and living
around the world, and certainly none of that would have happened. And so, part of that
whole equality idea for our mom was that there should be an equality of life for the siblings
as well, and it's funny. Nobody really talks about that, but it certainly was our family
perspective, our parents' perspective that everybody had an equality of life. Everybody
deserved the same things. Everybody deserved the home, the job, the family, the people
49
that you live with, the people who care about you, and that it's a natural thing for an
individual to grow up and leave home, and if David would have come to live with me, then it
would be like he hadn't been growing up and leaving home. So anyway, we had a ton of
conversations about what would happen.
For me it was really hard. It was really hard to conceive of David going into a community
living arrangement because of what happened to Walter, and so, I was terrified about that
option and what that would mean.
(To David) I was really terrified about what that option would be, and how long you would
be able to live in a community living arrangement and what would happen to you.
Lisa: OK. Kate, you said you were terrified about David living in the community because of
Walter's experience.
Kate: Yeah.
Lisa: Your parents had to be equally terrified, and yet they planned for David's transition
into the community. How did they get past their fears?
19:08:41:21-19:11:01:13
Kate: (To David) So, when you -- when mom and Daddy were moving you into the
community, they were concerned about it too, but I think that they really had an idea of
what the alternative was, and the alternative was Pennhurst, right?
So how did she put it? My mom said to me once that it was not going to be the quantity of
years but the quality of years, and that her goal was to be able to provide David with the
maximum number of quality years that she could provide him, and that's what she set out to
do how could she provide the maximum number of quality years, and always in the
background, you know, before the community living arrangements, that backstop was
always back to Pennhurst, back to an institution, so this really was progress, and so it was
really a matter of how to put the safeguards in place for this to work. So we were back again
to, you know, let's teach everybody, let's explain to everybody what to do, and so, when
Mommy and Daddy picked the house that you would live in, she interviewed a number of
the different houses. She was really thorough about the location. She was thorough about
all the people that you would live with, who your roommates would be, how all of you
would fit together. It was a careful consideration, and then, she spent a lot of time coming
to your house and visiting with you and talking to the direct support staff and working with
the direct support staff so that they could be more educated, and they could learn how to do
things, and so it really was a full-time job for her to be at the house. So she spent as many
hours as possible at the house in what she saw as a teaching capacity so that when
something finally happened to her, that there would be this structures in place for some
sustainability, and that was her -- that was her goal.
50
Lisa: David, you moved into your house in 1990, I believe. That was a fewer years before
your dad passed away. Can you tell me if you liked living in your house, if that was
something that you had wanted for yourself?
19:11:48:20-19:13:14:09
Kate: (To David) How did you feel about moving into a house, moving away from home? I
know it was hard for me when I moved away from home. How about you? In the beginning,
when you moved away from home, you still spent a lot of time back at the house, too.
So, he lived in his house, but he would have lots of day trips back home. Right, so he still got
to see Mommy and Daddy quite a lot, and Mommy was over at your house all the time, and it
really worked for the transition, right? Like some of the guys.
(To David) It was very different, though, because even though we grew up in a really full
house, by this time, you had been living at home alone with Mommy and Daddy and sort of
getting all of their attention to you, and you were sort of a spoiled brat. That's OK, because
you know, the rest of the kids say that I am, and I think that it was probably hard for you to
move to another house and then have to share everything with everybody else. So, it was
difficult because it was like having a bunch of brothers and sisters back in the house again,
you know. But it was pretty good I think while my mom was there.
Lisa: Kate, your parents made you David's guardian, is that right?
19:13:22:04-19:14:38:05
Kate: What they did was in their wills they, at the time I did not take guardianship, so they
identified me, but it is not a legal construct, and so they named me as his guardian in the
paperwork, but it wasn't a legal guardianship, so I didn't sign any papers to become David's
guardian. So, yeah, so in their wills, they had identified me, and that's part of the
conversation that we had. It was part of the conversation of what would happen next, what
would happen next, how would everything work, what if something happened to them,
what would my responsibilities be, what was expected of me, and we had a significant
number much really very serious business-like conversations about how is this going to
work.
I was living, as I said, I was married at the time. I was living in Maryland,
(To David) and you were still living from Philadelphia, and yeah, it took some figuring out
what it would mean and how it would work and what my responsibilities would be.
Lisa: And why is it you think your parents asked you as opposed to one of your other
siblings?
19:14:44:20-19:16:13:19
51
Kate: Yeah, the hundreds of other family members that we have? So, I think that there were
a couple of -- I think there were a couple of things, some really practical -- just really
practical considerations. One of them is that David and I, we are only two years apart. You
were older. David turned 50 this year. I like to keep reminding him of that.
(To David) Don't worry. I remind everybody else of their ages as well, and they're going to
have a heyday when I turn 50.
So yeah, so we are only two years apart, so part of it is the consideration of the possible
longevity. Part of it is that in my career, I was a business person, and they saw a large part
of this on an ongoing basis to be dealing with it as a business, to be able to deal with the
provider issues, to deal with the financial issues, to deal with whatever health care issues
would come about, that all of those would be sort of business constructs, and I don't know
what conversations my other brothers and sisters had, but I know that throughout many
years, pretty much from the time that I left home until the time that my parents died, I had
conversations with them about what would happen with David. So, it just seemed logical,
don't know.
Lisa: Kate, you had the conversations with your parents. They had certainly designated you
as you had said, to be David's guardian, but had they kind of practically prepared you? Had
you been involved in support meetings or any kind of provider meetings on David's behalf?
19:16:34:10-19:20:12:29
Kate: Yeah. It's interesting, because all of the years until I left home, I had attended
everything, right? You know, I was there to do the marches, to have posters, to do the whole
thing. I was certainly there during the school, all of the school events that happened. I went
to court with them for example. But at the time that I moved away from home, then I wasn't
attending anything, so I hadn't gone to David's planning meetings for example, and so I
wasn't involved first handed. I hadn't gone to these meetings. I wasn't participating in that
way.
Now, Mommy was certainly talking to me about it, so when she would go to one of your
planning meetings, then she would call me afterwards, and we would sit and talk about it,
but I can tell you, it's not the same thing, as being there, and it's also not the same thing as
having the responsibility.
(To David) So, you know, little things changed, like our relationship is kind of a complicated
relationship, because sometimes I'm your sister, and sometimes I'm your business manager,
and um, sometimes a nudge, and sometimes I'm a financial manager, and sometimes I'm
sort of the health care guardian, if you will, and so, the role can be very complicated. If I'm
visiting David, then it's always a question for you, why am I there, and what role am I
playing at that particular time? So it's really very -- it's a lot more complicated than I
thought that it would be and a lot more complex than I thought it would be.
52
Also, I didn't understand that I would wake up every single day and wonder what if
something happens to me, and so part of passing the mantle from the parent to the child is
also passing that responsibility, that worry, that every single day worry, what if something
happens to me. You know, in the beginning, I had an assumption that I would outlive David,
and that was certainly based on what happened to Walter, and what had been happening in
Pennhurst. Now I worry, my jobs can be pretty stressful, and so now I worry that maybe
David with outlive me, and then what will happen. I didn't really expect, being the youngest,
I didn't really expect to have to deal with any of those issues. I don't think that our parents
expected me to have to deal with those issues. It was part of the plan was that those
wouldn't be issues for me. So yeah, it's kind of surprising, and it's hard every day to wake
up and say, what would happen if something happens to me. I was in a car accident this
year, and it was pretty dramatic event in the middle of the car accident, that was one of the
things I was thinking was, oh my God, what's going to happen to David?
(To David) So I was less worried about what was happening to me at the time. There was a
lot going on in the moment, but in that same moment, I was worried about what would
happen, what would happen to you.
Chapter Nine: Marion’s Death, Leona’s Continued Advocacy, Planning for David’s
Future
19:20:18:28
Lisa: David and Kate, I wanted to ask you about something that I know is difficult, which is
the passing of your dad. I know that your dad passed away in 1994.
[David’s Voice]
Kate: I'm putting my arm up there. It hurts to put my arm up there. There we go.
Lisa: Your parents were life partners and certainly partners in their work. Your father was
such a supporter of your mother's efforts. So, I'm wondering how your father's passing
affected your mom both in her life and in her continued work.
19:21:06:01-19:24:35:29
Kate: That was really difficult. It was difficult because before he died, he had Alzheimer's,
and when Daddy went to the hospital, it became really noticeable, so you know, it was one
thing at home when everything was constant, but it was certainly different when he went to
the hospital and we could really see how difficult, how difficult a time he was having with
his memory, knowing who we were, and I think that that, it just was something that I think a
lot of people are going through now. You know, we have so many baby-boomers that are
aging, and so there's a lot more people today who are experiencing a family member with
Alzheimer's, and how difficult that is to watch somebody lose their memory and lose their
recollection and the disorientation that goes with that, and so it was very challenging
53
because Daddy was in the hospital, and David was living in his house, and so, my mom was
going back and forth between trying to take care of my dad and trying to take care of my
brother at the same time, and so it was really very, very challenging and very difficult to
manage those things at the same time, and yeah, it was really -- it was really hard. I
remember going into -- going to see my dad in the hospital, and I walked into the room, and
my mom said, Katie is here, and I remember my dad was sitting in a chair, and he looked
around like this. He leaned over and he was looking down, and he said, where is she? And
he was managing me as the little tiny me running around, you know, like at knee height, and
I walked over in front of him, and he looked up then. He traveled up my body, and the shock
that he had on his face of like, it was almost as if I had just grown up in that very instant, and
it was pretty shocking, so it's really hard, I think, dealing with Alzheimer's. It's a very
difficult and challenging situation. It also happened to be the year that we had major ice
storms in Philadelphia, and so the entire city was shut down, and so there were long periods
of time where she couldn't get to David, and she couldn't get to the hospital, and she
couldn't physically get there, and so it was really, really, really bad time. Those were very
difficult, very difficult months.
Lisa: When we first started talking, you described a little bit about them…
[David’s Voice]
Lisa: …how they met, the types of music they liked…
[David’s Voice]
Lisa: …how there was dancing in your house. Would you describe your parents, David and
Kate, as soulmates?
19:24:54:20-19:26:25:24
Kate: Yeah. They well, gosh, I sure hope so. They had 11 children. I mean, I don't think you
do that sort of willy-nilly, so I have really tender recollections.
(To David) I don't know if you remember these things, but I have really tender recollections
of my parents reading to each other.
I don't know if I mentioned this to you before. I have recollections of them reading poetry
to each other. My oldest sister, Barbara, is a poet, and so she would send some of her
collection home, and they would read poetry to each other. They would read the newspaper
to each other. They would watch Lawrence Welk, and when the band would play, they
would get up and start dancing and waltzing in the living room, and so there's a lot of really
tender, very tender recollections. And they had been through a lot together, you know.
They had been through -- they had been through major things on the political level. They
had been through the loss of my brother John and my brother, Walter. They had been
through court battles together. They had done a lot of things for the community, the
neighborhood, and so, yeah, it was a full life.
54
It was a really full life.
Lisa: Your mother carried on with her work obviously after your father passed, David and
Kate. As always, she was ahead of the curve, I think, in terms of her vision of what could be
for people with disabilities, and placement I think became one of your mom's passions. I
wonder if you can tell me a little bit about her work with Career Net.
19:26:56:05-19:30:02:25
Kate: Yeah, employment was a big, a really big passion. Every step of the way, the question
really was why not instead of why, so why not? Why couldn't individuals with significant
disabilities do these things. Why couldn't or why shouldn't children with developmental
disabilities an even significant disabilities be in the school room? Why not live in the
community? Why not have jobs? And so everything that we held as part of the American
dream, she really saw as the American dream, that it's really, you know, your tired, your
poor, that it was 100% of the citizens of the country had a right to aspire to these things,
and so how could we make them happen, and so it was exactly the same thing for
employment, and the question -- and so this was in the 90s. The question was, what would
supported employment look for individuals with significant disabilities, and if you could
have a person with vision impairment, or a person who is blind having a seeing-eye dog,
then couldn't there be something that's a compensating mechanism for individuals with
intellectual disabilities or other types of physical disabilities, and how can do you the
adaptation to make a job more suitable for an individual with multiple disabilities? And so,
Career Net was the start of a program. A number of families were involved and certainly
Dee Coccia for example and Maureen Devaney, and it really was to be able to explore what
employment doesn't would be available for individuals with significant disabilities, and how
could you do supportive employment, and the whole concept behind that was to have
individuals in a little storefront, in a neighborhood, where small businesses happen, and
that small business owners would get to know the individuals in their neighborhood, and
the individuals would get to know their neighbors, and from that, natural relationships
would happen. Natural opportunities would happen, and matches would be made.
(To David) Well, one of the things that we found out about you David was that your
preference was actually to sit in a diner and have milkshakes in the diner with all of the
diner people, and you preferred that to employment. But even though that was his
preference, that certainly just where it stopped, but it was an important part of being part of
the community. In neighborhoods in Philadelphia, every neighborhood has a diner. Every
neighborhood has a bar. So I guess I'm happier that you chose to sit in the diner and get to
know all of the diner people instead of all of the bar people, because it could have been a
whole different story, I think.
So, but it really was vanguard. It was ahead of its time to have supportive employment of
individuals with more significant disabilities.
55
Lisa: David, I'm going to ask your sister a couple of questions. Of questions, and then I'll
probably ask you some questions too. Kate, your mom had some health problems in her
later years. I know she had a couple of strokes, and she had some heart problems.
Kate: Yeah.
Lisa: As her health was declining, did she talk to you about her wishes for David's future? I
know she had talked about it with you and your father to some extent.
Kate: Yeah.
Lisa: But did she become more specific in her later years?
19:30:41:00-19:33:03:12
Kate: Um, she became more specific at the very end, so we had a conversation. My mom
had gone into the hospital for heart surgery. She was scheduled to go in for heart surgery,
and the night before her surgery, they sat and talked for a good portion of the night, um -I'll see if I can do this.
(To David)It's hurts when you do that.
So, the night before her surgery, we sat and talked. We talked about a lot of things. We
talked about –
(To David)I can't talk when you are grabbing me like that. Thank you.
[ David’s Voice]
Kate: (To David) I know. This is a hard thing to talk about, right?
So, we spoke about a lot of things, and I asked her if she was afraid of dying, and she said,
no, that her fear wasn't about her dying, that her fear was about what would happen to
David, and um, and so I said that she didn't need to really worry about that, that I would,
you know, that I would make sure that things were taken care of, and that David would be
taken care of, and that she didn't need to go into surgery with anything other than the
thought of getting better. She had some very specific requirements that she told me. She
said that David was living in his house, and that you should not move your house.
Lisa: Kate, you were going to tell us a little about your mother's thoughts regarding David's
future as he discussed with you before she entered the hospital.
19:33:25:23- 19:34:43:19
Kate: Yeah. She had some very specific instructions, so for example,
(To David) the house that you were living in, she said that I needed to always keep in mind
that the house that he lived in was his own home, and that the people that he lived with
56
were his family, and that I should always treat them as if that is his home and his family, and
so I should never ever ever move you from that particular house.
Um, we had conversations about David's rights and David's independence, and that I should
never ever ever take guardianship because that would be a violation of David's individual
rights, and she said that I needed to make sure that I never -- that I never had him take over
my life.
(To David) I don't know how to say that differently, that I had to always appreciate that you
were a separate and unique individual and you had a right to your life just as I had a right to
my life, and um, so, she was really very specific about what the future should look like.
Lisa: Had she take than any time, do you think, Kate, to reflect on her own life's work at that
point?
19:34:51:13-19:37:25:14
Kate: Yes, she certainly had. I know that in those last couple years, she was feeling very sad,
and that she felt that through all of the changes that had happened, that she was
unsuccessful, that she really felt like she was not successful, and she wasn't able to move
things forward the way that she had anticipated moving things forward, and it's really, you
know, it's really sad to think that she dedicated 47-some years to the entire movement, and
really was a force for the movement to be moving, you know, that it wouldn't get static, and
that she kept pushing it and pushing the limits of it, but I also gave her sort of a lack of
perspective about how far she had already come, you know. And I didn't really realize this
until maybe about two years ago, and I had the pleasure of meeting a young lady who was a
teenager. She was about 16 years old. She was going to high school. She was in all the same
classrooms as her peers, a young lady with developmental disabilities, a really fabulous
young woman, and when I spoke to her about her life, she talked about the boyfriend that
she was having trouble with and the school work that she hated and her history class was a
bore. She talked about what she wanted to be for her career, what college she would go to,
where she would live, and was really moved by this, because I just wished that -- I just
wished that my mom had lived a little longer so that she could have seen what she had
accomplished, because I really think that that's sort of the testament to what she
accomplished, and not just her, of course. A lot of other parents, they all put their lives on
the line. They put their children on the line. They put everything on the line, and I think
that it's difficult for many parents to have a perspective about how far they've been able to
take things, and um, I just wish she could have lived a little longer, and she could have met
this met in young woman personally to see how far it had come.
Lisa: What do you think she would have thought of her?
19:37:27:18-19:37:47:10
57
Kate: She would have adopted her. No offense to the young lady's mother, but yeah. No, I
know that my mom would have adopted her and would have mentored her, and you know,
would have lit a little fire under her butt to just be extraordinary.
Chapter Ten: Kate’s Advocacy, Leona’s Legacy
Lisa: David, I'm sorry. I'm going to have another question for your sister. Certainly, again,
as we've talked about a couple of times, and Kate when your parents talked about your role
in supporting David when they were gone, but I wonder if there was have a moment when
you understood that your mother was passing on the mantle of her advocacy work to you?
Was that ever something that you think she intended to do or something that you thought
you would do?
19:42:56:26-19:52:08:22
Kate: I never thought that I would do it. Throughout my parents' story, everything that
they did was never for David or Walter, that it was always for everybody else, for equality
for everyone else, and they passed up a lot of things for David that would have benefited
David and Walter individually for what would be good for everyone, and so I started out
really sort of the opposite, like I don't care about anybody else. I don't have the emotional
energy for everybody else, and so, certainly when I started, it was really specifically about
David and what would it be about David, and also, it was really hard. That was hard enough,
because I felt that I couldn't possibly live up to my mother. I mean, she was so remarkable,
so everything. She was so amazing for the long haul, you know. You know, this was my
entire life, and how do you live up to that? You know, there's no way, and anything less than
that to me seemed like it wouldn't be good enough, not enough, not that it needed to be
perfect, but just not enough, because it takes so much energy to move a movement, you
know. So, when I started, I was really fixated on just what is good for David, how do we get
things for David. It took me a long time to deal with figuring out what's my role and that my
role as a sibling is not necessarily the same as a mother's role. Our relationship is not a
parent-child relationship, so I'm probably tougher with David than my mother would be,
you know. Siblings don't let each other get away with anything.
[David’s Voice]
Kate: (To David) I know, that's a problem, isn't it. Right?
So, I really was just so focused on David individually, and I'm still kind of moving away from
it, you know. I had an awful lot of trouble with it in the beginning. In the beginning, my
mother died, and two weeks later I was at my first planning meeting. It was just two weeks
later that was the first planning meeting, and I walked into the first planning meeting,
talking about, you know, David's vacation and self-fulfillment, and items on the top of
Maslow's hierarchy. Right? You know, I mean I was way up there in the stratosphere, and
um, you know, David came in. He had problems. His clothes weren't right. He couldn't
58
show up for the meeting on time. There were some medical issues going on. There were
some car accidents that had happened, and I thought, well, I have to come down out of the
stratosphere, and let's just deal with everyday needs. And this was shocking to me, because
even though my mother did all the everyday needs, and certainly David and Walter lived at
home, she washed them, she bathed them. She did everything around the house, but the
conversation was also about the stratosphere. The conversation was always about equality,
and there were big conversations, and there were researchers in the house, and it was all
about big conversations about the movement, you know, this movement. So it was kind of a
shock to wake up one day, and there was nothing about the Movement. There were things
about health and safety and daily living and the staff turnover, and would there be any
consistency, and was David safe, not even was David happy, but was David safe. So it was
really a huge wake-up call. It was shocking, and so it took many, many years. It took many
years for me to make it through to realizing that choices are often about making a choice
between two bad things instead of choosing the right thing or the good thing. That was
really hard to understand. It was really hard to realize that you wake up every day thinking
what if something happens to me, and that's a daily part of life. It's a really hard to get the
phone call and the beginning of the phone call says -- the beginning of the phone call says,
we are in the hospital, you know. That's pretty shocking and pretty hard.
(To David) And then there was sort of like this transition that I realized that -- that I
realized, in order to do something for you, I really had to think about what it meant to all of
the other guys in your house, and in order to think about what it meant to the guys in the
house,
I realized I had to think about what it meant to the provider, like there's not enough
transportation, so if David needs to get someplace, then what does that mean in terms of
transportation for everybody, or there's not enough staffing, so how does that work, and
how do you have people together for staffing. And so, you know, just a little bit at a time,
you start realizing that it's impossible to do for one without considering the whole, without
considering the system, without considering the constrained resources, and so little by little
by little, little by little you just keep moving forward.
The things that don't change probably the best thing if I had to pick one thing that my
mother gave me, the one tool that she gave me, it wasn't equality. It was never giving up
hope, so that idea that you never know what tomorrow can bring is the most amazing thing.
It's the most amazing thing. So the story of David learning to walk and the repetition of that
and trying that, and you know, ten years later, David is walking, you know, in my
recollection for example,
(To David) I remember when you used to speak. I remember you talking at home. You
remember you calling me Katie. I remember you calling everybody by name, and you know,
so, I know that one day that there's this -- there is this communication, and that David not
only can express himself as he does express himself, but there is also some words in there,
and that there is communication in there that is happening between us, and so, the most
amazing thing that has happened has been that about a year ago, we tried the iPad together,
59
and we had an application that had a piano where there were two keyboards facing each
other, and I touched my side, and David touched his side, and I touched my side, and then
you touched your side, and it was the first time that we had a conversation, and so, we had a
conversation together like that through the iPad, and this way that we are together was
actually facilitated by that event and by being able to have something between us like that
that facilitated our communication in this way together.
So, yeah, so my mom gave me one thing more than anything else, and that was I was not
blessed with patience. I was not blessed with her patience, but she did teach me hope, and
so, some days are hard, and some days are scary, but every single day is full of hope.
Lisa: You were talking about what your mother taught you, Kate, and it's so incredible to
hear how many people your mother inspired. There's certainly a generation of women that
look to your mother as their mentor, as their guide, and I wonder if some of those women
are women that you're connecting with, if in fact they're in turn mentoring you.
19:52:42:23-19:56:55:08
Kate: Yeah. It's been -- it's been really most remarkable thing. So, in Philadelphia, Dee
Coccia and Maureen Devaney have sort of adopted me. I hope they don't mind my saying
that, but really, they became mentors to me and helped me sort of understand where the
Movement is more recently, what is the status of things more recently, what is the status of
regulation, what's the status of, of real peoples’ lives, everyday lives in peoples’ homes, and
so they've sort of taken on that mantle that it is coming full circle.
But it's been even more than that, so as I have just moved into the field a couple years ago, I
was traveling around the country. I worked at the Administration on Developmental
Disabilities as a fellow, a Joseph Kennedy, Jr. fellow, and as I traveled around the country, to
different listening sessions that we were hosting, in almost every location a person came up
to me and said, I recognize your last name. You wouldn't happen to be related to someone
named Leona Fialkowski, would you? And um, and then I would explain that I was her
daughter, and um, and each of them told me a story, um -- each of them told me a story
about my mom, and um, it's the nicest think about moving into the field, because I feel so
close to her. It's also really sad. She inspired so many people, and it's the same thing, that
she inspired people, not for something specific, not for a specific cause, but just the concept
of that hope and that capability to think forward and to think in the future, and I think that it
was her unique gift to be very strategic. She was always ahead of the time, ahead of where
things were. She was always on the front end of the wave, and it was a gift that she had to
be able to communicate that to other people, and that people would follow her into the
storm.
Not everybody did. So, there were organizations and people and affiliations that thought
that she should just stop, that enough was enough already, and you know, that we've won
something, so stop it already, and she never stopped. The value of never stopping is every
day there's a new parent that has a child with a developmental disability, and for that
60
parent, it is day 1. They have nothing before them. They have no history in it, and so, for
that parent, the moment that they find out that they have a child with a developmental
disability, they are beginning to think about the future and what happens when something
happens to them, and what is the future going to be for their child, and so, to keep
everything moving forward is so critical for every new parent that comes along, and it's
wonderful. All of the people along the way who have been given back.
[David’s Voice]
Kate: (To David) What? I know. It's really hard for me to talk about Mommy. I'm sorry.
Lisa: David and Kate, your mother once wrote something speaking of new parents and next
generation. She wrote, “the torch must be carried by the parents of the younger generation,
an the tools that I give them to overcome their obstacles are the following: Never-ending
hope, perseverance, and the unequivocal belief that all people are created equal”. Kate, as
you pick up the mantle from your mother, I'm wondering how your vision is the same as
your mothers and maybe are there places where it's different?
19:57:37:27-20:03:02:01
Kate: Um, you know it's interesting. I remember like it was yesterday when she wrote that,
and the Olympics were going on, and the Olympics are now, summer Olympics now, and it
was a moment in time where she was done. She was supposed to actually go to an event,
and she said she couldn't. She refused to come, and she sent a letter instead because she
couldn't do it. She knew that it was her swan song, and she couldn't do, couldn't stand in
front of them to do it, and I think that it's interesting because what -- it's not just what she
passed to me, but what the whole experience passed to me. You know, it was my entire life,
my entire upbringing, every place that I went, every early childhood recollection, I have
very few childhood recollections about, you know, jumping rope and riding bicycles, and I
have thousands of recollections about being on a picket line or being in court or meeting a
council person or going to D.C. or Harrisburg, and so she taught me some really, really
important things, or I see things. I can see things in this way that you have to have a long
view, but you have to pursue it in ways in the short term. So, for example, she was very
aware that in the time that she started the Civil Rights Movement was happening, and she
understood that that was happening, and so how can you capitalize on that and use that
momentum to help you go forward, and so, I really learned a lot about how to do systems
change in a macro-scale from how my mother worked the system, the bigger system and
understood when there were ebbs of the tide and how to go able to go with the ebb and flow
with the movement and the momentum to be able to get people going with up and rushing
forward and then to take a break.
So, it's sort of like physics. It has its own dynamic associated with it. Also, though, I was so
impressed with, I mean as an impression with everything that happened with my brother,
Walter. That - that is really what drives me. It's more than with David, what happened
with Walter is what drives me, families getting separated, and children being
61
institutionalized because there are no family supports. I understand perfectly what
happened with my parents as they were aging and they couldn't physically do it anymore,
and I can never blame a family for making choices based on what their individual needs are,
but I do blame the system, and so I think that it is our obligation to create systems that give
people hope and capacity instead of depleting people from their hope and their capacity,
and I just think that that's really important, and probably the last thing is a factor of human
dignity that I think the people who call themselves the activists and who talk about it in
terms of a movement are doing it because they see a human dignity in all mankind and that
there should not be a person's looks or a person's capability or a person's wealth or a
person's intellectualism that sets the bar for how you treat someone, that all people deserve
human dignity, and that we should be furious when that is trumped upon, and we should
challenge up the hill to do something about it and take a stand, and stand and fight, and
that's where the fight language really comes from, because you know you're really
protecting people who may be vulnerable at certain times.
So, those were the things that I think were really sort of handed down, not through a
conversation per se, but they were handed down because I was there to bear witness. I was
there to bear witness for 40 years to see the evolution of the Movement and to see what it's
going to take to perpetuate it, because we need to perpetuate it. It's not over yet.
Lisa: Well, and that is an interesting segue. Again, I'm pulling another quote, this one from
Tom Gilhool, who was another of your mother's many admirers, and of course the architect
of the Right to Education case. He wrote about your mother, “She never ceases managing
fighting and creating. Leona changed the world in ways that cannot be undone but which
require attentive vigilance and frequent bold insistence, and given where the disability
community might find itself today because of budget cuts and different philosophies”. I’m
wondering - Kate: David is going to stand up. I don't know how that works for the shot.
Lisa: It's different.
Kate: (To David) Are you going to take off?
I know we said that we had a wrap-up time, and we have exceeded it, have we not?
Lisa: Have we? These are my last two questions, David.
Kate: (To David) These are the last two questions.
Lisa: Last two. Can you hang out with us a little longer?
Kate: (To David) Can you sit down for the last two questions?
[break]
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Lisa: I guess in all of that, my question is what you think it will take to inspire the next
generation of leaders.
20:04:16:14-20:08:20:12
Kate: Yeah, you know, we talk about that all the time, and I'm not sure of the answer. Maybe
it was easier then because there was nothing to lose, you know. There was nothing to lose.
The first set of parents through, what they had to lose was that their kids wouldn't go to
Pennhurst, wouldn't go to an institution, and you know, so there was sort of this scary
backstop that you don't want to go back there. You don't want to go back there, and for that
generation, they all have a recollection of what that was, that that generation all remembers
Pennhurst, and they remember going into Pennhurst to put their children on waiting lists,
and they all saw it first hand, you know. They saw what that looked like firsthand, so they
were moving from the darkness to the light, and so, they were boldly going into the light.
Now I think it's a lot harder, because people have something to lose. They are afraid to do
work against their school systems because then there will be a retaliation. They're
concerned about retaliation from the school system on to their individual child, and you
know, that their child will get downgraded from a mainstream classroom into a segregated
classroom, and so I think it's harder for people today, because they have more to lose to
stand up and fight you have to be willing to lose as well as taking the risk to win. So, I'm a
little concerned about it. I think that we are going to have tremendous pressure that comes
on the system because of the aging baby-boomer population. Our family represents the
entire baby-boomer population, so my oldest sister to me is the baby-boomer generation,
and I know we are all getting older.
So, there's a huge aging population, aging in volumes. There is, we are looking right from
the face of the potential end to entitlement programs, pressure on Medicare and Medicaid
and Social Security. We don't have a family supports network paid for, so as the money that
we have been seeing over the last few years, the money is dropping out of the system. It's
just falling all on to the families and creating that same level of desperation, and so if
families don't say stop, stop, stop, those of us who were there then, who were there to bear
witness then, we know where that path leads us, and that it leads us right back into the
same solution, which is a volume-based solution of warehousing a ton of individuals. We
still see it in nursing homes every day. We still see it for the mental health environment
more frequently than we should still today. So, it's concerning, and I think that we really
need to make sure that all of us who know some of the history are out there telling the
stories so that no one can forget. People need to be reminded what nothing really was, and
our state's, our state developmental disability agencies can't think that everything is OK
because people are staying at home with their parents and so it costs less than having the
state centers. That's still not a funded system. So, I don't know what the solution is, but
people need a wakeup call.
Lisa: Last question. David, thank you for hanging on with us. Last question. And it's a
question for both of you. David and Kate, you witnessed your mom's incredible life, both
your parents' incredible lives, but in thinking of your mom, as much as she meant to the
63
movement and to so many peoples disabilities, at the end of the day, she was your mom, so
I'm wondering if you could maybe reflect on her legacy not as an advocate, but just as your
mom.
20:08:55:02-20:12:14
Kate: Um, it's pretty much the same, you know. Um, as a mom, for me, she did exactly the
same things, and my dad too, my parents had the same wishes for me that they had for you,
that they just wanted us to really be everything that we could be and to reach our own
individual full potential, and that as big as we could dream is what we would be able to
achieve, and my dad, for example, when I was small, you know, a lot of things were
happening on TV then, so TV was sorted of the big thing, and so we would watch Miss
America contests together, and my dad would say, do you want to be Miss America? And we
would watch the presidential elections, and my dad would say, do you want to be president?
Because by the time you're grown up, they'll be able to have a woman president, and so you
should consider if you want to be a president. You know, do you want to be a president?
And then we would watch the moon landings, and he would say, do you want to be an
astronaut? Because you could be an astronaut, and at that time, you know, women certainly
weren't doing any of those things except Miss America, you know, and so they really
instilled in me that life was full of potential and that the best thing that you could give
yourself would be options, you know, and that's everything they did for everybody else was
they didn't solve it for people. They never solved it for everybody. They didn't try to
answer for everybody, but what they tried to do was give people options. Parents who
didn't choose the same way that our parents chose still benefited by their work in giving
them options, and that it benefited not just individuals with developmental disabilities, bus
it also benefited individuals with very high IQs on the other end of the spectrum who
needed a specialized education for other reasons. So everything they did for the Movement,
they also did for me personally, and as a result, I've traveled around the world. I've lived in
multiple different countries. I learned to speak multiple different languages. I was a top
executive of some of the biggest fortune 100 companies, and you know, and now I'm doing
this, and so, it's been a great ride. It's been a great ride, and um, certainly it's all because of
what I saw them do, a hundred percent.
Lisa: Thanks David. Thanks Kate. Do you have anything you want to add?
Kate (to David): Do you have anything you want to add? Nope? Ready to go? OK.
Lisa: OK. Sounds good. Thanks.