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Visionary Voices
Interview with Jim Wilson
December 16, 2011
Chapter One: Family and Early Career
04:02:39:24 - 04:03:09:03
Lisa: My name is Lisa Sonneborn and it’s my pleasure to interview Jim Wilson at Temple University on
December 16th 2011 and also present is our videographer Lindsey Martin, and Jim, do we have your
permission to begin the interview?
Jim: You certainly do. Thank you.
04:03:09:03 - 04:05:01:27
Lisa: Thanks. Um, well, we’ll start Jim by asking a little bit about your background. I’m wondering if you
can tell me where you were born.
Jim: I was born here in the city of Philadelphia and I went to school here and, uh, went to The University
of Pennsylvania and went to The Wharton School of Penn. That was a life transforming experience to say
the least, and then went into the publishing business and went to New York City and worked at The New
York Times for about a dozen years and then went on to, thought I needed to get into the magazine
business and went on to U.S. News and World Report and, uh, then I went to the Newspaper
Association of America as Senior Vice President of sales and marketing for The Newspaper Association of
America and then I had, uh, a really extraordinary experience. I went with Hearst. Hearst is the big U.S.
publisher and, uh, we started a Russian newspaper in Moscow in Saint Petersburg and I went to Moscow
to, uh, manage the project. Uh, It was a joint venture with Izvestia and, uh, it was, uh, an extraordinary
experience, went back and forth between Moscow, Saint Petersburg and New York, all the time I was
commuting. I was younger then and I could handle that kind of stuff, and then I went to Forbes. I was
Vice President of Forbes, so you see my background was all in the publishing business. And then I
retired, uh, several years ago, but now I am doing consulting work with Time Inc. That’s where I am
today, of course the other part of my back ground is, uh, probably even more significant, I think,
certainly more rewarding for me and that is, uh, my involvement, uh, with The Arc, uh, and I can tell you
a little bit about that.
04:05:06:17 - 04:06:43:22
Lisa: So, even though you lived and worked in many places in the world, I wonder if you could share with
me some of your earliest childhood memories growing up here in Philadelphia.
Jim: Sure. We lived in Center City and, uh, I, uh, lived with my, uh, of course my mother and father and,
uh, my younger brother, Lowell Wilson and, uh, Lowell was Down syndrome, and, uh, my dad was, uh,
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practiced law in the city. Was professor of real estate law at Temple University and, uh, my mother kept
the family home and place, and my dad died when I was quite young and Lowell was quite young. I was
about 11 years old and Lowell was just six and, uh, my mother, uh, handled the two of us, as she would
say, that was a big challenge. And, uh, she was a single parent and, uh, I went to Friends Central School
which is out in Overbrook and, uh, in those days, folks like Lowell, uh, could not have access to public
education as you know and, uh, therefore we were fortunate. We had, would have, we had the
wherewithal at home to have him tutored and, uh, Lowell and I were forever very close. He is gone now,
died about ten years ago. He was my best pal for many, many years.
04:06:43:22 - 04:07:53:15
Lisa: Will you tell me a little bit about your parents? Maybe describe them. Um, we know what they did
for a living. What were they like as people?
Jim: My father was, uh, an extraordinary fellow. I didn’t know him for too long and, uh, he was, uh, was
a very erodite, uh, fellow and, uh, he had, uh, extraordinary empathy and sense of kindness. He was a
Christian and, uh, had a major impact on me, of course and my mother was, uh, was extraordinary in a
different way. She was, uh, a real personality girl, very kind of flamboyant. Uh, both parents were
driven parents so I picked up that drive from them. The drive to achieve and accomplish and, uh, of
course when Lowell and her die and the family, uh, that was, uh, transforming experience, I think for all
of us, particularly for me. And I can tell you a little bit more about that, too.
04:07:53:15 - 04:11:12:09
Lisa: I think we will certainly talk a little bit more about that but, um, I am curious as to your parents
experience when Lowell was born, um, you might have been too young to remember but perhaps you
remember, um, your parents talking about their experience, um, having a child with Downs Syndrome,
um, how did or what were the supports like for your parents, um, when they had Lowell?
Jim: There were no supports, uh, in those days, uh, and, uh, there was no formal education, public
education of course or any kind of training. Uh, importantly for me as a child, as a sibling, uh, there was
no help, uh, or, uh, support or assistance from the outside. Uh, to, uh, help, uh, siblings, uh, relate so
that, that was difficult. Of course it’s all changed now. Thankfully we have, uh, certainly at the Arc and,
uh, elsewhere we have many support programs for siblings. Uh, but, uh, Lowell was home, he lived with
us and, uh, he, uh, fortunately as I mentioned, uh, we had tutors for him and, uh, he was, uh, a major
presence in the house and a major focal point, uh, in the house but as my mother always reminded me, I
was, uh, as much as a challenge as he was. She would always make that very clear to equalize us, and so
I would not get carried away. And, uh, he learned to play the piano, uh, my, uh, mother, after my father
died had subscription concerts to The Philadelphia Orchestra for Saturday night and, uh, she would go
with him and, uh, if I were in town, I would go along and, uh, he loved music. Music itself was, uh, was,
uh, a terrific opportunity for him to learn words, to learn music, uh, to sing songs and, uh, about the age
of 13 or 14, uh, Lowell, uh, went to the, to the Walker School which is located , uh, just outside of the
city, uh, in Overbrook and, uh, as a residence and, uh, he, uh, had more formal education training,
private school and he lived there, uh, but he developed, uh, extraordinarily well. He, uh, worked up at
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The Philadelphia Arc workshop, uh, he would travel back and forth every day and on weekends, uh, he
would, uh, he would come into the city, stay at the , uh, house which was on Smedley Street in Center
City, Philadelphia and, uh, we were a tight-knit group and, uh, my mother as a single, uh, parent, uh, was
the leader of the family in many respects and, uh, we had a tremendous time together, the three of us.
04:11:12:09 -04:14:34:04
Lisa: Jim, I wonder, I mean, your brother sounds like an extraordinary man and a gifted man but I
wonder because of his disability, did your parents feel the pressure, either by medical professionals or
other family members to send Lowell, um, to institutional care when he was born?
Jim: Yes, uh, they did have pressure placed, uh, as I understand, that’s told to me. On, uh, I guess both
sides of the family there were recommendations, uh, strong recommendations, particularly after my
father died, that, uh, Lowell be sent to one of the state schools and hospitals. Of course, uh, that was
out of the question. Completely out of the question and, uh, it did not happen, would never of
happened and, uh, that, that was, uh, that pressure ended very quickly because my mother made it very
clear to those who were pressuring her at the time that, uh, that this was not going to happen.
Lisa: Your mother was quite a force in the advocacy community. I wonder, in the fifties, uh, when your
brother was born, um, how she initially became connected with other parents and other advocates?
Jim: I think she became, uh, connected, uh, remember I was quite young then so I was really not aware
of all that was happening and, uh, in that respect, uh, but, uh, she connected with parents in the center
city area, uh, The Arc of Philadelphia was founded, uh, I believe, uh, in the late forties. She was one of
the founders of The Arc, uh, the parents got together and, uh, put The Arc, uh, in place here. The
National, Association was founded in Minneapolis for its convention there. As I recall, it was in 1950.
She was involved in those events and, uh, she was, uh, a force at The Philadelphia Arc early on. The
Philadelphia Association for Retarded Children. That’s what it was known of course, then and she was a
board member for a number of years. She joined the, uh, ladies auxiliary of the arc and, uh, they would
go out. I remember distinctly as a young boy, uh, her going out on the street, on South Broad with her
canisters with the other, uh, ladies and these were aggressive, pushy advocates, uh, then. This was a
desperate time. This was a time of great desperation because folks of course, uh, who were
handicapped up until that point were kind of pushed aside in back rooms. There was no schooling,
there was no training. Uh, there was really no acceptance in the community so, these were difficult,
hard times and, uh, so they would go out, uh, along South Broad Street. I remember it distinctly, my
mother coming back telling me about it with these canisters full of coins and they’d go into restaurants
and, and solicit money and, and, uh, walk along the street, uh, with their canisters and, and, uh, with
their signs and so forth. That was an experience I remember so well.
04:14:34:04 - 04:16:01:02
Lisa: What would the signs say? What change or what were they hoping to accomplish with their
campaigns?
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Jim: They were the signs, would be placards, uh, that they would carry and their canisters would have,
uh, a signs, uh, around each canister, uh, Philadelphia Association for Retarded Children. Give,
donations, and so forth and, uh, the purpose of course would be to create awareness in the community.
There was no awareness, whatsoever. The perception of the part of the mass public then was to, uh, for
these folks, uh, you put them away from the community, as far away as you could. Of course that harps
back to the Greek and Roman days and that was the perception, the mass public perception of how you
deal with this and you deal with that kind of, uh, problem. So I think one of the major objective goals
was just to create public awareness, uh, at the time and the second of course, was to collect money and
they collected a lot of money.
04:16:01:03 - 04:18:28:22
Lisa: Jim, I wanted to ask, um, as a child, when did you notice that Lowell was different or did you notice
that Lowell was different from other children his age and did those differences matter to you?
Jim: Well, it was, uh, looking back on it, I didn’t realize he was different for, for years and, um, there was
a six year age difference between Lowell and myself and , uh, my dad had died and, uh, and my mother
was a single parent and the family was a normal family and she did not discuss with me, the fact that,
that Lowell was different and, uh, we went along with the understanding that, well, Lowell was just as I
was, the same and, uh, I guess it was probably in my, as late as, uh, 12 or 13 years when I began to
notice that Lowell was a little different. I remember one experience when we were very young and
Lowell was learning to walk and, and, uh, I would sit at one end of the room and, uh, on a chair and
Lowell and my mother would sit at, uh, another end or my father and Lowell would kind of off walk back
and forth between us but that didn’t strike me as any different. Uh, and my mother, uh, and father
made the point that this is the case with all young children. This is how they learn to walk. Uh, but I
guess it was, uh, 12 or 13, when I really began to notice that, uh, his language development was, uh, was
a little slow and I could understand him. Of course, his mother and my mother and father could
understand him, uh, but others could not understand him. I could understand him perfectly. I mean, we
communicated perfectly. Lowell and myself, uh, but, uh, then it began apparent on my own that Lowell
was different and, uh, my mother never really talked much about it because she, I think was trying to
create the atmosphere of normalcy in the family, that we were all together, we were the same.
04:18:28:22 - 04:19:48:24
Lisa: You experienced the, the great tragic loss of your father when you were, when you were young. Did
you feel at age 11 or 12 that you would need to be responsible for Lowell as you were growing up?
Jim: Absolutely, I, there’s no doubt about it. I began to develop that responsibility early on, especially
after my father died, I, uh, that sense of responsibility grew and, uh, and so, I played a major role, uh,
with Lowell all along. Uh, he had a major impact on my life. There is no doubt about that and, uh, we
would go out together often on weekends. I would, uh, go out and take him up to Nippon which was
one of the, uh, organizations in North Philadelphia that, uh, provided, uh, a variety of, uh, weekend
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recreational services, uh, to, uh, these folks and, uh, when we used to go down to, uh, the seashore, uh,
together as a family and take a place at the seashore.
04:20:53:10 - 04:22:13:05
Lisa: Jim, I wanted to, ask you if you could share some memories of vacations with your mom and Lowell
at the Jersey Shore. Oh, maybe not the Jersey Shore, just the seashore.
Jim: That’s right. That’s right. Down the shore. Yes, we would go down to the shore, uh, regularly every
summer. We would spend a couple months there and, uh, we all had a great time and, uh, I developed a
very close bond with Lowell, uh, during those summers. I was probably 11, 12, 13. My dad had just died
and my mother would take us down and we would rent a place down there and, uh, we had a terrific
time. We had a fabulous time. Lowell and I would go out on the beach together and wonder around on
the beach together and go in the water together and at night we would go out on the board walk and,
and, uh, uh, I would, uh, go to the steeple chase with him. Remember, he was quite young, about 7 or 8
years old and he loved to ride the fire truck and, and we would go to planters peanuts, uh, and buy a
bag of peanuts and then I would go back with him and, uh, those were terrific, uh, times of bonding with
Lowell.
Chapter Two: The ARC of Pennsylvania and Early Advocacy
04:22:13:05 - 04:25:07:24
Lisa: You went to school, um, Penn and Wharton and embarked on a career, um, initially with The New
York Times. Um, I am wondering when you first became a member of The Arc.
Jim: I became a member of The ARC, uh, probably, my guess is, uh, in the, uh, late 50’s and, uh, I would,
uh, come down from New York City, uh, for those meetings. Became a member the board quickly and
would come down, uh, from New York City, take the, uh, train and, uh, jump on a cab and go up to 1440
North Broad, where we located then and I tried to do that often, attend those board meetings so I
became, uh, quite intensely involved, uh, at that period of time.
Lisa: You had a demanding career in New York and the commute couldn’t have been all that easy, um,
doing it so often. Why was this involvement in the ARC so important to you?
Jim: I think, at that point, , uh, I was, uh, very much, uh, influenced by the civil rights movement and the
fact, that, uh, these gains, uh, were, uh, being accomplished, uh, for, uh, the gays and women and
African Americans and Native Americans, among many other minority groups and I began to feel
strongly that, uh, that our group of folks, intellectually developmentally disabled, uh, were neglected
and, uh, and then of course with a John F Kennedy becoming President and, uh, the impetus that he
provided, uh, uh, established in the presence of PCMR, The President’s Committee on Mental
Retardation. I was caught up personally in, uh, the civil rights movement and that was a great
inspiration, as I said and then with President Kennedy and his initiatives. I think that created the kind of
a fire in me and of course I had the personal background of, of my family. Uh, my mother, her
inspiration and the inspiration of Lowell so there was, uh, enough to keep me going. I should hasten to
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add too, that, uh, I was quite young and, uh, in those days, I could, uh, work 8, 10 plus hours a day, jump
on a train, get back to Manhattan at one o’clock in the morning and be bright and bushy eyed, tailed,
and ready to go, uh, the next day at 7:30, 8 o’clock, so, those were the days that I could do that kind of
thing.
04:25:07:24 - 04:26:14:25
Lisa: The ARC was initially established as a parent’s organization but you’re a sibling. Was it unusual for
siblings to be subjectively involved with the organization at that time?
Jim: I think it was. Uh, there were very few, if I recall, uh, siblings. Uh, there was one, uh, George
Horowitz. Uh, who was, uh, became involved with The ARC just about the same time that I did. The ARC
of Philadelphia, The Philadelphia Association for Retarded Children as we were known and, uh, George
and I became very good friends. Uh, he had a brother, uh, who was handicapped, disabled and, uh, we
became good pals and he eventually became President of the Philadelphia Association and played a
leading role, uh, in the associations initiatives and activities going forward. But outside of George, I don’t
recall even one sibling, uh, at the local level or even at the state level, uh, who was involved in the arc,
so I was probably kind of unusual at that time.
04:26:14:25- 04:27:38:25
Lisa: When did you become President of The Pennsylvania Association, Jim, and how long did you serve
in that role?
Jim: I, uh, became President of The Pennsylvania Association( PARC) uh, in 1969 and, uh, that was a very
important year, very important time and, uh, the tenure was two years so I served for two years at a
very transformative time in the association’s history.
Lisa: What did, when you took your leadership role, what did you feel were the most pressing issues
facing the intellectual disability community at that time?
Jim: I, think that, uh, I, I was caught up, uh, at that time with, uh, what was then the, uh, the major, uh,
thrust initiative, uh, particularly, uh, here in Philadelphia, uh, but state wide, uh, but , uh, the focus was
on closing Pennhurst. Pennhurst State School and Hospital and, uh, it was a dehumanizing place and, uh,
the thrust of our efforts, uh, primarily were to close down Penn Hurst State School and Hospital.
04:27:38:25 - 04:29:01:27
Lisa: I know that in 1968, probably just before you took over the Presidency of The State Arc, Bill Baldini
did his groundbreaking piece about Pennhurst, called ‘Suffer the Little Children’. Um, do you remember
seeing that broadcast?
Jim: I remember seeing that broadcast. I could go back even a few years before, uh, Bill Baldini did that,
did that fabulous, uh ‘Suffer the Little Children’, uh, segment, uh. It was extraordinary, uh, so impactful.
But, uh, during the 50’s and into the 60’s, uh, particularly in the 60’s, uh, the, uh, the drum beat of
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focused on closing Pennhurst kept increasing in intensity and, uh, we, a few of us, were, uh, majors in
the band, beating the drums and, uh, we were out getting interviews, uh, on the television stations and
planting articles in the newspapers and beating the drums, uh, focused on closing Pennhurst State
School and Hospital and, uh, of course Bill Baldini’s, uh, piece was, uh, a capstone to those efforts.
04:29:01:27 - 04:31:12:02
Lisa: Because of his piece over the years, um, a lot of money was funneled to improving Pennhurst. Um, I
have heard various figures, 21 million is the, is the figure I have heard most often. Um, did that money
improve Pennhurst? Was it possible to improve Pennhurst?
Jim: From my stand point, I think and the standpoint of many of the leaders then, uh, that did not make
a difference whatsoever. We, uh, focused, uh, in May of 1969, as I recall. I was then President of the
association and, uh, that was a turning point, uh, at that time and we met up at Buck Hill, the Northeast,
uh, section of Pennsylvania for our, uh, state convention that May and, uh, I can remember, uh, so
distinctly, uh, we, uh, plastered the walls, uh, of the room where our delegates, uh, met. Delegates from
the various counties, the local associations at that time and we plastered the rooms with these huge
pictures of the dehumanizing conditions at Pennhurst and, uh, we, uh, brought a resolution after, I think
after the second or third day of, uh, the uh, convention, uh, to, uh, retain council and, uh, ask, uh, legal
counsel, uh, to focus on Pennhurst and, uh, suggest, uh, legal recommendations, legal strategies to
address the issues at Pennhurst and, uh, in turn, that was voted up. And that was a major turning point,
uh, to our efforts, uh, again the focus was on closing Pennhurst notwithstanding the 20 million or 25
million dollars that was, uh, used to improve Pennhurst. The focus again was to, to just close Pennhurst.
04:31:12:02 - 04:32:49:16
Lisa: So, I am wondering, Jim, I know that, um, The Arc or PARC had a residential services committee. I
know that Dennis Haggerty served on that committee, chaired that committee, I believe.
Jim: He did.
Lisa: Um, and he and others, um, did go into Pennhurst and tried to expose some of the conditions they
saw. I believe some of that information was the information you presented at your convention.
Jim: Yes
Lisa: I wonder if you can tell me a little bit about that. What, what did they find? The folks who were
investigating Pennhurst and what impacts did those findings have on you?
Jim: We had, uh, at the state association level, we had, uh, effected a study of Pennhurst, uh, which
went back a few years. So we had already accumulated a great deal of information, as best we could, uh,
about what was going on at Pennhurst and, uh, Dennis’s initiative, uh, give him so much credit for this
with Bill Baldini and the crew, the television crew going in there with their cameras, uh, and then
exposing that. When suffer the little children had an extraordinary impact in the community. A major,
major impact in the community and I think that was one of the turning points, uh, that led us to the, uh,
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resolution that was introduced at that May convention and, uh, then subsequently, uh, we retained Tom
Gilhool and, uh, I’ll tell you a little more about that and how that proceeded, if you wish.
04:32:49:16 - 04:34:52:02
Lisa: Yes, I’ll, I’d love to ask you about that but first I’m curious about the reaction of the PARC
membership, um, both to the findings, these, these horrific images exposed the horrific conditions, of
course at Pennhurst.
Jim: Sure
Lisa: Um, were parents secure with the idea of pursuing litigation to close Pennhurst?
Jim: Not all parents were happy with that. It wasn’t a unanimous vote on that resolution. Uh, there were
dissenters. There were many dissenters, uh, that is parents, who were really afraid of retaliation. There
were parents who felt that Pennhurst was the best place in the world, uh, for their family members. And
that was one of the stumbling blocks to change. Parents who felt that there could be retaliation, who
wanted us at the state association level to continue to work with the state administration, uh, to try to
negotiate with the state administration, uh, and there were some of us on the other hand, including Pat
Clapp and Dennis and certainly myself and Stu Brown, who was chair of our legal advocacy committee,
who were beating the drums and said we’ve done that for all these years and we’ve not accomplished
much and we had to move to force change, to affect change at Pennhurst. So, parents, some parents
were stumbling blocks. That resolution at the May convention, 1969 did not pass unanimously. One of
the reasons we put those big posters all over the place and they were terrible, dehumanizing, uh,
images of folks at Pennhurst was frankly to just to get the troops on board so we could get that
resolution passed.
04:34:52:02 - 04:36:52:08
Lisa: How did parents experience those photos? Did you, did you understand where they were coming
from?
Jim: I certainly understood, uh, where the parents were coming from. Absolutely, uh, I could, uh, I talked
to them all. I was of course, uh, pushing hard for approval of the resolution, uh, but, uh, I had, uh, and
even to this day have the greatest empathy for those parents, uh, who were really quite afraid, quite
afraid of us taking the course that, uh, we wanted, uh, the group to take and, uh, I can remember sitting
down with, uh, several of them and talking to them and trying to explain what we were trying to do and,
uh, that, uh, we felt confident that, uh, this was the right course for us at this time and we had to take,
uh, this opportunity at this time. The timing was so propitious and we would never have the opportunity
that, uh, we had at that point in time and we needed to do so then.
Lisa: Why then?
Jim: Because it was, uh, it was a precipitous time and, uh, we, we were ready to do this. We had the
backdrop of, of the civil rights movement and the changes had taken place, uh, some of us realized the
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class action initiatives of the African American’s had been so extraordinary successful beginning of
course with, uh, the 1954 Brown ruling of the Supreme Court and, uh, subsequent rulings and that legal
strategy advocacy was the way for us to go. So, we really in many respects copied, uh, the tactics of the
civil rights movement.
Chapter Three: The Right to Education and PARC Consent Decree
04:36:52:08 - 04:40:32:26
Lisa: When you did decide to act, I know that you engaged, a young respected, civil rights poverty law
attorney named Tom Gilhool. I wonder if you could tell me about your initial meetings with Tom and, so
what course he suggested the PARC follow, in terms of closing Pennhurst.
Jim: My initial meeting with, uh, Tom and of course Dennis Haggerty found Tom and, uh, that’s to
Dennis’s credit. Tom was, mean we, we clicked. Tom and I clicked immediately. Uh, he has a sibling too,
as I did and, and so, uh, we just, uh, we hit it off, uh, right away personality wise and, uh, he, uh, he had
passion, uh, he had energy. He had vision and, uh, we talked about all of that. He was ready to jump into
this all the way. Uh, He wanted to get on board, take this up and, uh, he, uh, he was ready to, uh, pick
up on that resolution, uh, which he did and he came back to our, I believe it was November of that year,
1969 at the board meeting in Harrisburg. That was another major turning point and, uh, Tom came back,
uh, with five legal strategies. Uh, one strategy was right to treatment. I remember another strategy was,
uh, redirecting the, uh, capital improvement campaign and of course the fifth strategy of the five. There
were two others but the fifth strategy was right to education and, uh, remember him saying at the time,
this is Tom’s vision. He had this vision, saying that, uh, pursuing the right to education action. That
strategy would take us out of the residential context because we were all so focused on Pennhurst. He
said, this is going to take us far beyond, uh, the Pennhurst issue even though we would be focusing
initially on Pennhurst and we would include that class of, uh, folks, uh, at Pennhurst, uh, in the litigation
and he was absolutely right. The right to education focus of course broadened our effort and took us far
beyond that residential context. And, uh, of course at that November board meeting, again it was not a
unanimous vote. Uh, there were parents there who stood fast, who were really quite afraid and I
remember, again sitting down with some of them, talking to them and I can certainly understand, uh,
their, even to this day their feeling and their fear that, uh, that there would be retaliation and that we
should just continue to negotiate with the state government and that was not the answer from my
standpoint nor the standpoint of Tom or Dennis or Stu Brown or Pat Clapp or any of the others and of
course we then moved ahead at that point and we moved, uh, to, uh, began to assemble the case, retain
Tom and that was the launch of the right to education litigation.
04:40:40:01 - 04:43:37:18
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Lisa: Tom Gilhool was engaged to represent PARC and you decided to pursue the right to education. In
preparing the case, which I think took the better part of the year. You really did have access to some of
the most really progressive thinkers in the disability community including Gunner Dybwad and I am
wondering if you could tell me a little bit about what your memories are of that time, preparing the case
and, uh, maybe what conversations stand out.
Jim: I remember Gunnar Dybwad so very well. He was a lightning rod, uh, for us. He was an
extraordinary person and such a leader, uh, in the movement. , uh, he was then of course a professor up
at, uh, The Florence Heller School at Brandeis University. And, uh we connected with him early on at the,
uh, at The Arc, at the state association and, uh, we would meet in Harrisburg regularly, uh, before our
board meetings and I was President then and we’d invite Gunner down, uh, to Harrisburg and he would
come down and, uh, he was a dynamo, uh, he was, uh, an intellectual and he was so passionate and, uh,
he passed along that passion to us. He felt so strongly about, uh, achieving, uh, the objectives that we
had set forth for ourselves. Full rights for our folks and he would hammer away and pound the table, uh,
talking about the timing. This was the time to do it. We could not miss the time. And he’d tell me
directly, he’d sit in front of me directly and said, Jim you’re the President of the association, you have
got to do it. You have got to get this vote. And, uh, he’d stand up and walk around the room and, and we
would have these long meetings that would go into the early morning hours of the day and I would have
to remind everyone that we had a board meeting the next day. I’ve got to function guys, you know and
handle this board meeting so let’s, we’ve got to end this by dawn at least so, uh. But the point was, uh,
that, and is that, uh, he gave us kind of a road map, uh, and, uh, gave us, uh, the kind of, uh, support
that, that was so necessary, uh, to us all. To Tom, Tom didn’t need it, uh, but for Dennis, uh, he probably
didn’t need it, uh, but certainly for me. Uh, I, I loved the guy.
04:43:37:18 - 04:49:41:22
Lisa: Ok. PARC vs. the Common Wealth in Pennsylvania was filed in ‘71 and it really was become one of
the landmark cases of the disability movement. Um, did you have a sense of what the outcome would
be and how quickly the outcome would present itself?
Jim: I did not, uh, I, uh, but talking to Tom I had kind of at least, uh, a perspective on what the outcome
might be. He was quite confident, uh, but still nervous, uh, as, as the date for filing, uh, the case
approached, uh, but, uh, I didn’t think personally, uh, I understood the full implications of, uh, what
might happen if we were successful. The, uh, the ripples, uh, to, uh, the, uh, interim orders of the court
approving the consent decree were extraordinary. Immediately after the, uh, orders of the court, uh,
were handed down, I remember it was October, I think, uh, 1972, interim orders. The, uh, The New York
Times had been covering, uh, the case, uh, from the very beginning, picked it up right away and we had
planted some of those stories but keep in mind you can’t plant stories with The New York Times. They
do their own, uh, investigation and, uh, so they had already assigned a reporter to work on the case and
follow it and, uh, so I think it was October, uh, probably the first week of October, uh, when the interim
order of the court, uh, approving the consent decree between the common wealth and PARC was
handed down by the federal court in Philadelphia and, uh, the reaction was immediate. The ripples, uh,
were, uh, immediate and, uh, The Times, uh, picked up, uh, the story, uh, the next day in a major front
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page, uh, piece, uh, outlining, a terrific piece, outlining the, uh, uh, the orders of the court and
immediately thereafter, uh, there was, uh, picked up all over the country. Of course The Philadelphia
Inquirer, The Pittsburg Post-Gazette picked it up, uh, the newspapers across the country in Scranton,
excuse me across the state immediately picked it up in Scranton, Wilkes-Barre and then, uh, the next
day the, uh, papers across the country, uh, picked up the story. The, uh, Boston Globe, I remember, The
Washington post all had, uh, The Miami Herald, The Chicago Tribune, The Los Angeles Times, I
remember The San Francisco Examiner and other papers, uh, picked up this story with, uh, with major
reports and then it was about a week later, uh, The New York Times in a major editorial, uh, ran a story
on the, uh, implications, uh, of, uh, this court order. It was a very, uh, strong advocacy, uh, story,
editorial by the Times sitting the humaneness of the ruling and the fact that it was long overdue and of
course pointing to the challenges, uh, ahead, that is, in terms of programs and staffing and so forth. Uh,
the other ripples too, , uh, occurred very quickly. There were a number of other cases. I remember, uh,
several already underway. There was a case in DC. Uh, The Mills case was a right to education case.
There was a case in, , uh, noted case in Alabama. It was the Wyatt case and there were other cases, uh,
that, uh, were, uh, brewing, uh, ready to be filed. There is no doubt about it that our own, uh, ruling
here in Philadelphia had a major impact on the favorable outcome of those cases. I also remember, uh,
talking to Tom. We talked all the time then and, uh, remember him saying to me, “You know Jim what
you got to do is get The Arc to set up a seminar. And, uh, why don’t we set up he said, a seminar to help
train, uh, folks, execs, Arc execs and, uh, uh, State Presidents and others and we’ll do it here in
Philadelphia and, uh, why don’t you set this up?”. Tom was good at giving orders and, uh, I said of
course, terrific idea. Let’s do it and so, uh, my good friend, uh, Stu Brown who was chair of our legal
advocacy committee at the state level and I. We put this together. Stu took, took charge of this and, uh,
he was magnificent. We had a daylong meeting, here in Philadelphia. I remember that so distinctly and
we had about 50 people from all over the country who came in. Uh, state presidents and execs and
others and, uh, we went through the, the dynamics of this case and how it came about and, and how it
was organized and how the case was assembled, uh, for the court. And, uh, I remember at the very end,
uh, over hearing several people saying as they left to go back home. We’re going to do this, we’re going
to get this started in our state, we’ve got to do this now. So that was another ripple effect, uh, of, uh,
this, uh, extraordinary ruling that was handed down by the federal district court, here in Philadelphia.
04:49:41:22 - 04:51:28:00
Lisa: Do you know how long it took other states to adopt some of the legislation?
Jim: They picked up right away on it. Uh, I,I know, uh, the Mills case as I just cited just a moment ago
down in DC, uh, the ruling was handed down, uh, shortly thereafter. It was very favorable, uh, to, uh, to
the outcome that, uh, we, uh, were working for. Uh, that is provide access, uh, and appropriate, uh,
education and training to all and I emphasize all, of our kids. And there were a number of other cases
that picked up right away on this. There was a ground swell. Of course, uh, The Arc, uh, in Pennsylvania
was beating the drums. I mean, I was one of the drum majors and we were beating the drums, uh, to get
the word out to create the ripple effect, uh, and, uh, of course other organizations jumped on this right
away. Uh, our national association, uh, moved quickly, uh, to get out, uh, information to all the states,
uh, and the local units , uh, ,of course, there was CEC which jumped on it right away UCP and many
12
other organizations, uh, that focused on the disabled jumped on this right away. Remember that this
was 17 years after, uh, the, uh, Brown ruling which was 1954 which struck down of course the separate,
uh, but equal notion and it took us 17 years. Our case was, that was a precedent case for our case, our
right to education case. Took us 17 years, uh, to pick up on that ruling and extend that Supreme Court
ruling to our people.
04:51:28:00 - 04:55:57:13
Lisa: The New York Times, you talked about the editorial which was so wonderful and support of the
legislation, um, it also definitely noted that the implementation would be challenging and in fact it was. I
believe that the court gave the state a year and maybe extended to about a year and a half to not only
bring schools and teachers, um, up to speed, in terms of educating children but finding children who
were either underserved or not served at all and I wondered if you could tell us a little bit about the
efforts to implement the consent decree.
Jim: It was a major project. Uh, we didn’t realize, uh, what we in for. We thought, all the sudden now
this manna, uh, from heaven dropped down and everything would just happen. Well, of course it did not
and, uh, the common wealth, uh, PARC, the state association and the Philadelphia association were very
active in the implementation and, uh, the, uh, first phase of it, uh, was compile as I recall which was to
identify and locate and evaluate these children and of course, uh, there was thousands of these, uh,
school age youngsters who had been denied access, uh, to, uh, public educations sitting in back rooms
and homes and so forth and, uh, we had to find those, uh, kids and, uh, Milt Shapp who was the
governor then of course he was the governor who had, uh, ordered his attorney general to sit down
with us, uh, and after one day of testimony in the federal district court here and, uh, work out a consent
decree so he was very much on board, uh, with what we were doing. He was, uh, a major, uh, influencer
and he moved very quickly to, on the state level to begin the implementation process. So, our first phase
was to get, uh, involved at which we were at the state association level in finding these kids and I recall,
uh, directly, uh, that, directly the association setup. We set up a child hunt program and, uh, we put
together kits that - we sent kits out to all of our, uh, local units or county units all over the state to help
them to locate these kids, uh, because these were kids that were as I started to say a moment ago that
were difficult to identify. They were kids who had been hidden away in back rooms in homes all across
the common wealth. So, that was a major first step and The Arc was very much involved in, in
identifying, uh, and getting those kids identified and evaluated too. Then the second, uh, phase of that
which was Compet and, uh, that phase of, of course, uh, uh, was the effort that one of the two masters,
Dennis Haggerty was one and, uh, Ignacy Goldberg, who was then a professor, a professor of Special
Education up at Teshiva in New York City. He focused on that, uh, dimension of the implementation
process and, uh, the Arc played a very important role in that, uh, over the long run. The fourth, uh, the,
uh, 14th amendment, due process, um, element of the consent decree of course, uh, was to set up the
mechanism for hearings and that mechanism was, uh, as Tom would, uh, has said at that time, that was
so extraordinarily important and, uh, those hearings of course were designated, uh, for, uh, kids in
school as I recall on change of assignment or every two years or I should say and every two years. Uh,
those hearings were so very important and, uh, the state association played a major role, an advocacy
13
role supporting the parents and supporting others at those hearings so. The state association played a
major role, uh, in the follow up in the, uh, compete phase of the implementation.
04:55:57:13 - 04:56:56:07
Lisa: Jim, do you remember how many children were identified as part of the process? Even a
guesstimate…
Jim: I boy, I, you know, I don’t really recall, uh, the number that. I remember it was in the thousands
and, uh, I remember, uh, that, uh, we went all over the state, uh, Pat Clapp became president of the
state association. At that point I was kind of exhausted so, uh, probably a good time for Pat, who was
terrific. She was absolutely terrific so she, uh, picked up on that and, uh, she went all over the state
talking to the local communist to get them involved and getting, uh, uh, phone calls out to people
through the local Arcs, uh, getting, uh, uh, messages out, letters, etc. to find these kids but I don’t recall
the exact number but I recall it was in the thousand, many thousands.
04:56:56:07 - 04:58:44:27
Lisa: What was the response from parents, who for the first time were getting some support for their
children?
Jim: I think they were bewildered. I, I think they were so, they were just bewildered. They, they were so
excited and, uh, that this opportunity which they never expected it would come. They expected to have
their kids in backrooms or they were on the waiting list, these kids, most these kids to Pennhurst or to
Polk or to one of the other state institutions. They thought that was the end, uh, and, that was the best
that they could hope for to send a kid or a youngster, a young adult over to Pennhurst, to a place like
Polk and that, that was it and, uh, they were, they were amazed, just absolutely amazed. I remember
talking to them and, and, uh, that’s when the state associations advocacy, uh, program really came into
focus and, uh, working with those parents. Trying to bring them along, helping them to understand,
helping them to cope , uh,with this whole new environment. Helping them to, uh, be advocates, uh, for
their kids and school at which they had to be and, uh, that was a very important role that the state
association grew into very quickly and Tom expected this. He pointed this out. I remember, early to me
and said, uh, this provision, this mechanism in the court ruling, uh, is as important as any of the other,
uh, stipulations in that court ruling.
04:58:44:27 - 05:01:56:22
Lisa: PARC (Pennsylvania Association for Retarded Citizens) would work with Tom Gilhool, certainly
again on litigation to close Pennhurst. Pennhurst was closed in 1987 so it took another 15 years to
realize your dream of closing institutions from those initial conversations, um, back with the PARC board
members and the park membership and your early conversations with Tom Gilhool. So I am wondering
how it felt to finally see that goal realized.
Jim: I think it was, uh, just, uh, an extraordinary time but I think that after the, uh, right to education
victory and keep in mind of course that, uh, that all led to, uh, the first civil rights act for the disabled. I
14
think it was section 504 of the rehab act of ‘73 and then of course the monumental 1975, uh, Education
for All Handicaped Children Act which was, uh, a paradigm change for American education. After we had
achieved that and all that happened subsequent, uh, federal monies, uh, coming into the states. The
state matching monies, the, uh, special education teachers, uh, being, uh, retained and brought into the
schools, there was a sense of renewing. We’re going to do it. We’re going to get Pennhurst closed and
of course Pennhurst, that it is closing or even before that, uh, triggered, uh, the changes, uh, as I recall
to The Social Security Act which provided the funding , uh, for community services and that was a
national impact, uh, that, uh, The Halderman case, led by Tom and of course, uh, he argued the case
several times before the U.S. Supreme Court and it did take, uh, 7, 8 years to reach its end and for
Pennhurst to be closed, uh, but, uh, the accomplishment of after right to education, uh, the
accomplishment of, uh, the establishment of community services across the country. Uh, those
accomplishments were absolutely amazing and, uh, I think looking back on it, it was a time, it was a time
of revolutionaries. We were revolutionaries. We were, uh, just, uh, on the, on the edge fighting and, uh,
uh, not because of me but because of people like Tom and Pat Clapp and Gunner Dybwad and Dennis
Haggerty and my good dear friend Stewart Brown. These were the folks who brought this to life and
made it happen.
05:01:56:22 - 05:03:37:09
Lisa: In supporting all of this, um, incredible, um, social change, um, I, I have heard you refer to this as, in
some ways a mothers’ movement and I wonder was it a mothers’ movement that really spurned,
spurred on or supported your efforts.
Jim: I, I think it was initially a mothers’ movement, uh, I think the mothers were the, uh, true first
advocates. Uh, I don’t think there’s any doubt about it now that’s based in part on my own personal
experience. My mother was, uh, as I have said, uh, a dynamic early leader, fearless leader, fearless
advocate, uh, uh, but then it spread and, uh, then I think we have to be very grateful for the
professionals who became involved. Uh, the legal advocates like Tom, uh, the other professionals that
came in, uh, and, uh, became involved. Uh, the, uh, the organizations that, uh, uh, jumped in, uh, the,
uh, The Center for the Handicapped at, uh, Notre Dame, uh, The Center for Law and Education up at
Harvard, uh, so I think it was the mothers at the very beginning, uh, but, uh, it spread and it spread
quickly and it was a firestorm, uh, certainly, uh, in the 50’s and 60’s. 50’s of course was the time of the
organization of the, uh, associations. They were called parent associations and they were formed, uh,
answer to your question again directly, uh, certainly by the mothers who were right on the frontline at
the very beginning.
Chapter Four: The Need for Ongoing Advocacy
05:03:37:09 - 05:06:12:22
Lisa: Given all your efforts to ensure that children have the right, the opportunity to be educated, um in
schools that people have the opportunity to live in community and communities of their choosing. Um,
15
how is it to see that the current fiscal cutbacks are putting people in position of being returned to
institutional care?
Jim: It’s devastating. Uh, to see this and, uh, now I am not in the front scenes, uh, as I was, uh, but to
watch this and, uh, it’s, it’s, it’s devastating. I think that, uh, one of our major issues over many years,
uh, has been awareness and, uh, we have, uh, recently at the national level, uh, The Arc has, uh,
initiated a, what they call a rebranding campaign. In other words to get out with, uh, the message of, uh,
our people and the needs of our people and, uh, that was launched, uh, just a few months ago. We
have, uh, uh, over, uh, 700 chapters, uh, across the country. Uh, very few, we are one of the largest, uh,
uh, organizations, charity federations in the country. We, uh, are probably right behind the, uh, uh, The
United Fund in terms of overall dollars raised but very few people know about The Arc, know about
what we are doing, know about our people and, uh, so The Arc is now, uh, established again as I said, a
rebranding, a branding campaign to get the word out. We ran a special section in Time magazine back in
September which reached over, uh, 19 million people across the country. We’re going to do another one
next October. So creating that awareness, uh, and building on that awareness is so very important, uh,
to, uh, building a ground swell against these cuts, getting folks out there to write letters, to call their
congressman, congresswomen and so forth. So, it is devastating. There is no doubt about it but I think
the fact that we are out there working on our image, activating our, uh, lobbying groups down in
Washington. I think we’re going to, hopefully, uh, cut back on those cut backs that are planned
05:06:12:22 - 05:07:22:28
Lisa: Um, do you think siblings will or should play a larger role in the advocacy efforts that you are
describing?
Jim: I think siblings, uh, are playing a much larger role. Uh, I know now of siblings, uh, that I didn’t know
then, uh, who are involved. There are several staff members, uh, at The Arc, uh, in, uh, Washington DC
who are siblings and, uh, I think siblings have a very special perspective of course as a sibling and, uh,
we’re not parents, that’s for sure but we have a different perspective and also a different emotional
attachment too and, uh, on one hand I think we can be quite independent emotional but on the other
hand we do have that attachment and, uh, there are programs of course now at, uh, the state and, and,
uh, national level and the local level for siblings, programs to help siblings. Those programs as I have said
before did not exist, unfortunately I would have benefited greatly by it, uh when I was a youngster and a
sibling
05:07:22:28 - 05:10:22:21
Lisa: Lowell wasn’t in the right age to benefit from, um, the opening of schools. Your first real, um
achievement as an advocate, um, but he certainly could benefit from all of your efforts on behave of
insuring the people with disabilities enjoy life in the community and I wonder if you could tell us a little
about, um, his adult years and his life and community
Jim: He had a fabulous life. Uh, he, uh, as I think I have mentioned before. He lived at then, at The
Walker Center which is in Overbrook and, uh, fabulous place. He had gone to school there and, uh, he
16
loved it, uh. There were probably about 20, 25 folks there, peers of his. He was very much involved, uh,
in the community. He went to, on weekends he went up to, uh, the Nippon Association up in North
Philadelphia for recreation activities, um, every weekend. Uh, he worked at The Philadelphia Arc, the
workshop there. Uh, he made money. He was so proud of it. Uh, I can’t tell you how proud he was of
the money he made at the, uh, workshop, uh. As I have said before, we were very close knit and, uh,
also, uh, I was, uh, so fortunate to, uh, find a beautiful girl, my wife Eve- Ann. 45 plus years now of
marriage and, uh, she, uh, uh, she got into this project, uh, just, uh, full time, uh. She, uh, became a
special education teacher in New York. She worked in Harlem, teaching these kids and, uh, and then
when our two girls were born, uh, Susanne and Diantha, lovely young ladies. They’re in their thirties
now and beautiful young adults. Uh, they were very involved too and, uh, we moved from being, uh,
originally of course it was a four family group with my father and my mother and Lowell and myself and
then it became a three family group with my mother and, uh, Lowell and myself and, uh, then it became
a much larger group with Lowell and Eve- Ann and her two daughters and, uh, my mother. She lived on
for a number of years and, uh, we continued that closeness and, uh, we had the best of times, uh, with
Lowell and with everyone.
05:10:33:05 -05:14:09:09
Lisa: Jim, when you look back on all of your advocacy efforts. What were some of the hardest times as
you recall?
Jim: I think the hardest times, uh, were those years, uh, after my father died and, uh, the, uh,
desperation that, uh, I, I could see, um, in my own family. The difficulties I began to realize that we were
facing and the struggles, the challenges and also then into the larger community. The struggles, the
challenges, uh, but at the same time there were, uh, moments of great triumph, uh, in my own family,
uh, there was, uh, triumph, uh, happiness. Great happiness and, uh, we all had a great time together,
uh, notwithstanding the challenges as I have said before. My mother made it very clear that, uh, I was as
much as of a challenge to her when she became a single parent as, as Lowell was. In fact she would
often say that I was more of a challenge to raise than, uh, than my brother. So she kind of kept me in my
place. I could never get to a feat and carried away with myself, uh, but they were the happiest times in
our family and, uh, and then on the larger level as I have said, I got very much caught up in the Civil
Rights , uh, movement in the sense that we’ve got to begin to pick up for our people. Our people were
neglected and, uh, left out and, uh, we had to fight for these people and, uh, and, uh, getting together
with people like Tom and Dennis and Pat Clapp and Eleanor and fighters. Uh, we, we were just right
there and, uh, we were going to make it happen and , uh,I think that the characteristic that, that infuses
all was a certainly passion. We all had passion, certainly energy. We were all relatively young and full of
energy and, uh, we could move about and, uh, we forgot to sleep in those days. Sleep was just
something that we had to put up with as I recall, uh, but most important we had vision. After a period of
time we gained vision. We realized that, uh, that we could see beyond that horizon, uh, in the distance.
We could see beyond Pennhurst. We realized that we, the short term goal was to close Pennhurst but
we wanted to get beyond that. We wanted to get beyond the residential context as Tom had suggested
at the time and go much further and, uh, again as I have said, we were influenced by, uh, the class
action litigation suits of, uh, the African Americans, particularly that paradigm changing 1954, uh,
17
decision of the Supreme Court, uh, on Brown and, um, I think those are the, those are the experiences in
the moments, the moments of desperation, uh, but they were far overshadowed, uh with moments of
triumph and happiness that we were able to do what we did and we were part of this huge movement
that, uh, that made it possible for these folks to have civil rights.
Chapter Five: Inspirations
05:14:09:09 - 05:15:13:09
Lisa: Who were your inspirations in either life or your work?
Jim: Of course, uh, my, uh, inspiration was my family and, uh, certainly my father initially and, uh, and,
uh, then, uh, Lowell, my brother and, uh, particular my mother, she was, uh, just a dynamic, uh, person,
charming. Lowell was, uh, was just such, such an extraordinary person. He made us all happy and he was
happy and he was fulfilled. Uh, my mother was fulfilled. We were all fulfilled and, uh, uh, felt that, uh,
we had, uh, life was, had, had meaning, uh, for us, and, uh, and we had to, uh, work together to achieve
these objectives that we had set out for our family and also for, uh, the larger community
05:16:29:10 - 05:17:20:20
Lisa: When did you first feel like an advocate?
Jim: Well, I never, uh, felt I wore a big sign on myself, uh, advocate and chief. Uh, I never felt that I had
that sign around my neck, uh, but I think I realized early on that, uh, this was going to be my way a life.
This was going to be a major, uh, definition for my life and, uh, that, uh, this would, uh, provide me with
the kind of meaning, uh, that is necessary for many people. I felt that this was a plan that set for me. For
my life.