Visionary Voices: Interview with Joe Angelo
July 24, 2013
CHAPTER ONE: BACKGROUND
06:19:14:10 – 06:19:34:10
Q. My name is Lisa Sonneborn. I’m interviewing Joe Angelo at the Doubletree Hotel in Pittsburgh,
Pennsylvania on July 24th, 2013. Also present is our videographer Ginger Jolly and Joe we have your
permission to begin our interview?
A. Yes, you do.
Q. Thank you very much. Joe I’m going to ask your name and occupation.
06:19:42:13 – 06:19:46:20
A. My name is Joe Angelo and I’m a retired mathematics professor.
06:19:47:10 – 06:19:54:25
Q. Thank you. And can you tell me, Joe, when and where you were born?
A. I was born in Pittsburgh, in 1935.
06:19:56:05 – 06:20:12:00
Q. And can you tell me a little bit about your family? Did you have a large or small family?
A. My family as a child, um, consisted of my brother and me and my parents. Uh, Aline and Sam, my
brother Lou.
06:20:12:20 – 06:21:22:05
Q. Can you describe your parents a little for me; maybe starting with your mother?
A. My mother was born in but uh two years after she was born she went to Italy and then was there
until she was probably about 14. So she was uh an American citizen because she was born here. She
didn’t know the language very well when she came back um and she came back and went to school just
rural elementary school. Um, my father uh was born in Italy and came to this country when he was 13
by himself. He ran away from home um, and then lived in Pittsburgh when he got here with an adoptive
uncle; a person who really wasn’t his uncle but claimed to be so he could get him off of Ellis Island. Um
and had several jobs before beginning to drive a bus in Pittsburgh; one of the first bus drivers in
Pittsburgh. He eventually gave that up and went into contracting business and was a contractor.
06:21:24:25 - 06:21:38:25
1
Q. When you were growing up had you experienced disability firsthand either in your family or in your
community at all?
A. No. No. I had no experience with people with disabilities.
06:21:39:15 – 06:22:43:05
Q. Did you have any perceptions of people with disabilities?
A. You know, I will take that back. I can remember when I was in high school um there was a man who I,
a student, who I believe um would have been diagnosed with Fragile X now that I know a little bit about
it. But he had a very difficult time in school. He was… there were no accommodations for people with
disabilities in those days. Most children with uh that kind of disability just didn’t go to school. He was
actually punished by the teachers for giving wrong answers. He was made fun of by the students. It used
to really irritate me so I became, I hope, his friend. We walked to and from school together so I got to
know him better than some of the guys I was with all day, but he was a nice kid and I just felt bad for
him. That was the only experience that I can recall.
06:22:45:25 – 06:24:10:10
Q. So as a young man what did you imagine that your life would be? Was there a particular profession
you wanted to pursue?
A. Yes. There was. I was fortunate, one of the fortunate few that has been called to a profession when
they were young, I was about 16 year old and knew then that I was going to be a teacher. There was just
no doubt in my mind that that was going to be my life’s work. I believe I was touched a little bit by the
spirit for that because it kind of matched my personality and a lot of things that I liked to do are involved
in that profession. So yes, I wanted to be a teacher all the time. Now I also made a decision when I was
about 18 years old that I wanted to be married and I wanted to have children. And I felt again called to
that vocation as well. Just felt the call. I got tugged that way and there were many occasions during my
life when… especially with the career uh that I might have been pulled away because there were mighty
fine offers to stay in the military, to stay in industry. Eventually to go into administration in education
that I just had to say no thank you, I’m a teacher. So I had a forty year teaching career.
06:24:11:10 – 06:25:33:10
Q. You mentioned that one of the other things you had envisioned for yourself was a family. Can you tell
me a little bit about your wife; her name, how you met?
A. Okay. Her name is Shirley, and Shirley Ann I should say because she loves her middle name although
she hardly ever uses it now, because it’s not what people do. And I think her mother only called her that
when she was angry with her, but Shirley is a wonderful lady, just a wonderful lady - a very good person.
I can remember when I first started dating her my father said to me one day “You’re going to marry her
2
one day aren’t you?” And I said, “No, I don’t know for sure”. We haven’t even talked about anything like
that but I tell you what, I’m going to marry somebody just like her. Her values and her ideals just
matched mine. We both wanted children. We both believed in helping other people and just you know
living in a good life and, so, yeah. I still love her to this day. In fact Friday is our 55th wedding anniversary.
Her partnership with me as my interest in people with disabilities evolved was terrific. I could not have
done anything I did without her.
06:25:44:05 – 06:27:27:05
Q. Did you and Shirley start the family that you had envisioned?
A. Oh yeah, you asked me how we met.
Q. Oh, I did!
A. Yeah and I have to tell you that because that’s an interesting story. I got out of college and when I
came home my best friend was having an engagement party. He was getting engaged to my best female
friend. Not a romantic friend, but just a really good friend that I kind of grew up with and he wanted me
to come to his engagement party and he said “bring a date”. I said well I’ve been away for four years and
I don’t really know anybody anymore. I said… and so he and another friend took me out to a jazz club.
We sat around and listened to some really good jazz music and eyed up the young ladies as they came in
the door and sure enough this very nice looking girl came in with a crowd of girls and they sat at the
table right next to me and I looked at her and I thought she’ll be the one. I’m going to see if she’ll go to
this party with me. So it wasn’t love at first sight, but I just thought she’d make a good date and so we
had a dance or two. I think we probably danced to two songs and she returned to her table and then
they all got up and left and all I had was her name. No phone number or anything like that but I was
pretty sure I wanted to take her to that engagement party so that next day I, the next evening I tried to
call her and about the second phone call I got by using her name her father answered and I got to talk to
her and we had our first date that way. The romance in the relationship didn’t come for many, many
months after that but still, that’s how it started.
06:27:27:25 – 06:29:16:20
Q. And when did you finally realize she was the one?
A. Well, I wasn’t a teacher at the time. I was working as an engineer with US steel but I knew I wanted to
be a teacher. I just took the job with US Steel because I didn’t want to start and not be able to finish. I
had already enlisted in the military, the Army, so I went away for the Army. That was in January and in
May I finished my basic training, and was ready to ship overseas actually, and I got 25 days leave. Prior
to that we probably had been out together maybe a dozen times. That’s about it, maybe a little bit more
but not much and we were very good friends but no conversation at all about a future together but
being away from her that long I think began to really feel some feelings that I wanted to spend my life
with her but even during that 25 day leave I had we were together maybe four, five days of the week we
didn’t really talk much about being married and all. But that’s when the bond came and when I went to
3
the military I actually called her long distance from Hawaii; trans-oceanic line cable and asked her to
marry me because I didn’t want her to get away then. I knew she was the one.
Q. And so you…
A. My brother had to put the ring on her finger because I was 5,000 miles away, and he kissed her too!
And I've never really forgiven him for that, but she said “yes”.
Q. Definitely to you right? Not your brother.
A. Nope, definitely to me.
06:29:17:10 – 06:29:55:10
Q. Can you tell me about the family you and Shirley had?
A. Before we were married during the, about a week before, we had some conversations. We talked
about family. We both wanted children but when we talked with the priest he asked us how many
children we thought we should have and being Catholic you're supposed to say as many as God gives
you but we wanted to put a number on it. So I said oh maybe four. Coming from a family of two I
thought four would be a nice number and Shirley said six so we compromised and we had seven. Um,
that’s how we came to that. We both wanted children and so we had a bunch of them.
06:29:55:15 – 06:30:13:10
Q. And what are their names?
A. Oh, I can do that I think. I’ll do it in chronological order oldest to the youngest; Joe, Tom, Mary,
Jimmy, Susan, David, and John.
CHAPTER TWO: JOHN’S BIRTH, REACTION OF FAMILY AND FRIENDS
06:30:16:00 – 06:30:41:00
Q. So today Joe, much of our conversation is going to focus on John; your youngest son who also has a
disability and I'm wondering, firstly, if you can tell me when John was born.
A. John was born on June the 4th, 1972; same year as the PARC Consent Agreement [Right to Education].
Same year as the first days of education for children with intellectual disabilities.
06:30:42:00 – 06:32:31:00
Q. When John was born, was it immediately apparent to you and Shirley or even to his physician that he
has a disability?
4
A. I think it was apparent to the physicians but we realized that all of our other six children were
different from each and every one of the others in several different ways and so though John was a bit
different, a little kind of lethargic and kind of like soft, maybe, to hold. Shirley did express some concern
about it because he um he wasn’t breastfeeding very well as well as the other children. So she had a
concern about that but the doctors hadn’t said anything to us at all. But after we spoke about that, the
very next day, the doctor did tell her at 5:30 in the morning and what he did is he said, “Your child is a
mongoloid”. Period. That’s all he told her. Maybe he didn’t know anything else about it because there
wasn’t much in their education about. Still, I think maybe he could have had an encouraging word or
two. So she called me and told me, and we had a friend who had a child with um Down syndrome so we
knew a little bit about what we were getting into but we had no idea of the severity of John’s condition
or how he would be or as good as or not as good as the young lady that we knew. I was scared. I was
depressed. I’m glad I hadn’t been … I was not asked uh to make some important decisions about John in
those early weeks because I would not have been able to make a good decision.
06:32:31:20 – 06:34:08:00
Q. Joe I wanted to ask, I wanted to go back to something you said. You said that the doctor told Shirley
um told her in the early hours of the morning, and on her own.
A. Yes.
Q. And so um I’m wondering what that experience was for her and was there anyone to support her in
that moment when she was given this…
A. Yes. Well not right at that moment, no. At that moment, right after that even the nurses that were
caring for her almost quit talking with her. They didn’t know what to say and so they probably felt it was
better to be silent. Except for a nurse’s aide whose name was Amelia, and she was not a professional
nurse. She just bathed babies and changed their diapers and held them up for folks to see but Amelia
did get to see her and she told her “Honey” she said, “I’ve seen a lot of babies like yours and most of
them do really well.” So that was after, but when she, after she called me and told me the news, I mean,
I went into an immediate tailspin. Right then I was useless, but I knew I wanted to be with her so I got a
neighbor to come over and watch the children and I raced to the hospital to be with her, and she had a
smile when I got there - a smile from ear to ear and tears streaming down her face and she said to me
“Joe, we have a job to do.” So she got it right away. It just took me a little longer, uh a good bit longer as
a matter of fact.
06:34:08:10 – 06:36:30:00
Q. So I wonder if you can tell me a little bit about that. Was it was you knew perhaps about John’s
disability or similar disabilities from your experience with your friend or maybe what you didn’t know
about the disability that felt particularly overwhelming to you.
A. I think it was more about what I didn’t know about it. By that time I had been a scholar for many,
many years. Uh got my PHD in 1970; John was born in ‘72 so I spent a lot of time in education. So
5
whenever I got that news, in spite of the fact that I was in a bit of a tailspin from getting the news, I
went to the library to find out more about it. What I read was children with Down Syndrome - only they
said “mongoloid” in the studies but if you don’t mind I’m not going to use that word. Those children
with Down syndrome don’t learn to walk until they’re four years old or more. Most do not learn to
clothe or feed themselves. Most of them will need perpetual care for their whole lives 24/7 and many, if
not most of them, are mute. And you know, I'm sure from your experience that none of that is true, but
that’s what I read; scientific studies based on collected data. So that put me into my tailspin, but later on
I realized where they were getting their data. They were getting their data from what they call state
schools and hospitals which were neither state schools nor hospitals. They were just warehouses where
they put children whose families were advised to place them because of their disabilities and that I
found out later, because I actually visited those places on unannounced monitoring calls - they were not
receiving any stimulation at all just because they were undermanned. One person might have eight or
ten children to take care of. How can you be a parent to one of those eight or ten children; teach them
what they need to know to get along with that kind of work condition uh space; that kind of work
conditions.
06:36:32:25 – 06:38:28:15
Q. As a researcher were you able to find any kind of alternative information; information that didn’t
come from institutions. Anything that gave you hope for what John’s future might hold?
A. Not much, not much, because see, in those days, most families, many families, had children with
disabilities either placed in an institution or kept them entirely at home. I mean. I delivered papers and I
found children like that in the backyard; some of them very capable but they were penned in and they
couldn’t get out or they were kept indoors so there were not many people with intellectual disabilities in
public. Thank goodness we had that friend who brought her daughter to my house. My kids loved her by
the way. They played with her and they all had a good time but um there just wasn’t that much around.
And remember, John…the kids didn’t go to school. They just didn’t go to school and, plus, their parents
enrolled them in a public school where they got no support and sometimes they were mistreated by the
teachers and the students. So no there wasn’t anything until a few years later there began to be some
books written about Down Syndrome in particular. John was about two when we read the first really
encouraging book and I don’t remember the name of it and I no longer have it because I was in the habit
of lending anything good like that to people who needed it and, they didn’t always get returned, but it
was a very encouraging book. It described what the condition was, even technically, medically what it is
and it helped us a lot to understand how John became that way um and it gave us hope for the future
because it did put it out that they are capable of learning most things.
06:38:29:15 – 06:40:55:00
Q. What did you and Shirley tell your other children about John, if anything?
A. Well, they weren’t home when I got the news broken to me. Well they weren’t all at home. The older
ones were in Pittsburgh with my mother and I had the younger ones with me. I was on summer vacation
at the time. So I wanted to wait until they were all together so in a couple of weeks they all, we were all
6
together and I broke the news to them in the living room. But by then even, though I was in severe
depression, I knew that it couldn’t be that way in front of them so I began to think about how to tell
them about this without having them go into some kind of a funk, so I still remember my words. I
remember saying that we have a child like Gina. Gina was the girl that they knew. But we don’t know
how serious he is, how seriously he is affected by whatever Gina has, and we should think of him as a
plus - the mathematician in me - as a plus instead of a minus. That we have each other. We have
everything that we had before, but now we have something else. We have John and he is going to be a
positive thing in our lives. I remember telling the kids that he would help them to determine who their
best friends were because they would have to accept him as being part of you. And for many years I
never even thought of asking them what was going through their mind whenever I did that until not very
long ago, maybe five or six years ago, I asked them. It was amazing to me. It really didn’t surprise me,
but it just made me feel really good. The oldest boy said, “Well, Dad I'm going to teach him, I was
thinking of how I was going to teach him how to hit a baseball, hit a whiffle ball, how to swing a golf
club, and how to shoot baskets”. The next oldest boy, “Oh I was going to teach him how to play a guitar
and sing and do some music”. Every kid was talking about what they were going to do to help him and,
as a result of John’s entry into the family, all of the children went into professions that involve working
with other people; three teachers, two physical therapists, and a nurse. So I really think that influenced
John. John’s influence on them helped them choose their professions.
06:41:04:10 – 06:44:28:10
Q. Joe, we were just talking about your children’s reaction to the news that your youngest, John, had
Down syndrome. I’m wondering about the reaction of your extended family or even neighbors, folks in
your community.
A. Well I’ll tell you the good, the bad, and the horrible. My mother and father I don’t think accepted it at
all. But John eventually… within two years my mother was convinced that John was going to be just fine.
I don’t think my dad was, but my dad um was ill himself. He had a massive stroke shortly after John was
born, and… but my dad was also the kind of person who knew he just had a positive outlook in life so he
knew that we were going to be okay. But there were some members of Shirley’s side of the family,
probably some of my family members too, who were actually wondering why God had punished Joe and
Shirley by giving them a child with a disability. And I know there were some people that really thought
something was wrong with our family, with what we were doing. So I just developed a pretty thick skin
about that and decided that we would just try to educate them as John grew up, you know, to see that
John was a blessing, but that wasn’t at the beginning. After a few years, I came to the conclusion,
though, in mulling that over, that belief of some of our relatives, that God had nothing to do with that.
Good and bad things happen on this earth because of probability. When the egg gets fertilized there’s a
three in a thousand chance that it’s going to be fertilized in such a way that there is going to be an extra
chromosome, and that child is Down syndrome. Came to the conclusion that we had John as a stroke of
good luck. People might view that as a stroke of bad luck, and maybe in the beginning I would have. I
did, I probably did see it as a stroke of bad luck, but where the faith comes in is whenever you are
confronted with a situation what you do about it, that has to do with the way you really feel in your
heart. That changes and that grows and that becomes a very good thing eventually if you let it and that’s
7
not chance. That’s you and the Lord working together, I believe. So yeah, we had John as a stroke of luck
and look how, look what we did with it, you know? How we ran with it. I think even at the end some of
those relatives were wondering about it, and John and Shirley’s values changed their minds; decided
that we were okay.
06:44:31:05 – 06:45:57:15
Q. Was there any suggestion again whether it was family or professionals, someone in the community,
that John should have been placed in an institution or some kind of residential program?
A. Not by the medical profession. John’s pediatrician, Doctor Mitchell, when we took him home from the
hospital had some advice for me because I ran up to him and said, “Now what do we do?” He says, “Well
you’ve been a father to six other children. He said take him home and treat him like a baby because
that’s what he is.” You know later on those words just were so beautiful for me to remember, “he’s just
a baby” and the doctor that gave us the news was not our doctor much longer after that. We decided
we needed to change doctors. I really, it wasn’t from the medical profession but there were people,
some of whom had children of their own with disabilities, who suggested that since we didn’t know the
severity of it yet when John was just a little infant that we go ahead and put him on a waiting list for an
institution. Shirley and I gave that about two minutes flat and both said “no way”. This is part of us.
We’re not parting with him. So yes, we were advised to put him in the institution but it was just a nonissue almost well from the very beginning.
06:46:00:00 – 06:49:15:00
Q. You were talking, Joe, I think very candidly about your struggles when John was first born to accept
his disability. Was there a particular moment or something that caused you to move past those feelings
and connect with your son?
A. Yeah, at last. That funk that I was in lasted for about six or seven weeks. I’m sure that, had I been
diagnosed, I would have been clinically depressed and given some medication, but I chose not to go that
route. I chose to try to do it myself and then, if I couldn’t, I would do what I had to do. I tried to do it just
by prayer and trying to jack myself up. I wasn’t getting anywhere with it. About five weeks I was
beginning to get a little worried because I had to teach the second summer session and I need to make
bucks for my family and I was praying one night and I said “Lord you’ve got to do something. You’ve
really got to do something. I need a message, I need some direction and I’m not getting it and I’ve been
praying for it for five weeks and I’m really getting upset with you, so how about it?” Well after saying
that prayer for about a week I remember one night putting my head back in the pillow and practicing a
form a prayer that we often don’t think of trying and it’s just to try to make your mind blank and be
open to whatever can fill it. And, by golly, I don’t know if it was God speaking to me, but it came to me
what my problem was, just like that. I knew why I was in such a funk, and it was because I was thinking
about how having a child like John born into my family was going to affect my life. You know, not going
to walk until he’s four, going to need constant care all of his life, might even be mute. I was pretty sure
8
that was a possibility and I just didn’t know how I was going to deal with that and I was frightened, and
so that particular night I said “Okay, God. I opened my mind.” The message I got, as I said was, “Think
not about yourself. Think about the gift you’ve been given and what you can do to help this gift, this
child, to be the best that he can be.” And I swear, I put my head back, closed my eyes, and I slept like a
baby that night. I woke up the next morning totally changed, just like that.
CHAPTER THREE – EDUCATION FOR JOHN
06:49:19:25 – 06:55:43:00
Q. I’m wondering if in the absence of direction from the medical profession where you began to look for
resources for John?
A. There were some - there was something that happened about a year after John was born, a little less
than a year. A group of twenty-five parents got together and decided to try to form a chapter of the Arc.
Now I didn’t even know what the Arc was, but there was this ad in the paper, and I told you what a
wonderful [wife] Shirley was. Well, she scoured the newspaper every day that could help us or help John
and one day she said “Joe, look at this!” And showed me this ad that said there was a call for a meeting
at the sheltered workshop of any parent of a child who would be interested in forming an organization,
an agency, to help each other and to help the children. So we went to that meeting and twenty-five of
us were there, and we decided we wanted to be an Arc chapter. We only needed ten and we had
twenty-five. So that’s how it started and then, being on their mailing list, the Arc of PA’s mailing list, and
beginning to get some up to date stuff that was going on. Education was brand new. I went to my first
Arc PA convention in 1973. About a year after John was born, I began to get some really good stuff.
That’s probably how I found out about that book I was telling you about earlier, you know, that
described Down syndrome in a much more positive way, and when I went to that convention it was just
not even a year after the Consent Agreement; giving the Right to Education. The parents at that
convention were elated, they were happy, and had wonderful visions for their children and I just bought
into that hook, line, and sinker. So that’s how I began to get some positive information really through
the Arc and through their guidance and as a result of that and as a result of Shirley’s searching we found
out that you know children with Down syndrome have large tongues and small palettes and so that’s
why they have sometimes a speech that’s difficult to understand. So speech therapy would probably be
a good thing, so when he was about a year old we found a speech therapy clinic that was at IUP [Indiana
University of Pennsylvania], the university, that would accept children needing help. And they would be
helped by a student wanting to be a speech pathologist, but they would be monitored by a college
professor, [a] certified speech pathologist. We got him into that. He got into speech therapy by the time
he was a little bit around a year old. He got into swim classes about the same time and the time he was
about 18 months old there was a, Shirley found this advertisement for an infant stimulation program
being run by the adjoining county, the next county over; Armstrong County. And they would come to
the house and work with John and help the parents too, so we enrolled him in that and the lady came
for a couple of years and gave me one of the best pieces of advice that I got all through John’s life was
“Send John to [a regular] nursery school.” Because all of my children were older I didn’t have any little
kids at home with him anymore. They were all in school and John wasn’t being stimulated during the
9
day, in the wintertime, by his siblings. So we looked at nursery schools and so that’s, I mean the whole
thing evolved from Shirley’s being such a good mother and finding things for him to do.
The nursery school was a wonderful idea and we investigated regular nursery schools and found out
that he qualified in every way. There was only two requirements. You have to have money, and the child
has to be potty trained, and John was potty trained because if he smiled Shirley put him on the potty
and believe me he was potty trained both ways by the age of two so he qualified very well for a nursery
school. He had a wonderful experience there. [There] was great interaction with the other students, the
teachers there all loved him. One of them wrote a wonderful poem about him. But before we did that
we investigated the one that was being run by the intermediate [unit]. It was special-ed nursery school.
In those days special-ed was in basements of churches across the street from the public school and
maybe on the other side of the town, really. So we went to observe that nursery school and at the same
time the elementary school for special-ed and they had wonderful program; one teacher, three aides
and we thought only eight children. We thought, well this looks pretty good, but we realized that the
children in the program weren’t talking with each other. They were interacting with the teachers and
the aides but not with each other and John, having been so stimulated at home with his siblings, and all
of the neighborhood kids came to our house because they didn’t want our family going to their house
with seven children. He was super stimulated, and we thought this could be regressive for him. So we
decided not to send him to the nursery school, the intermediate nursery school. The teacher there was
upset with me when she/we told her we were going to send him to a regular nursery school, and she
told me that I was just one of those fathers who didn’t want to admit that his child had a problem, and
that’s called stereotyping. I had never been stereotyped before. I didn’t like it at all, and all through
John’s life we’ve had to put up with his being stereotyped and I know that other children and other
people with disabilities are always stereotyped, and it’s horrible. So whenever I would see that teacher
years later I would always make sure she knew of John’s accomplishments, so she wouldn’t be too
worried that I had messed him up.
06:55:45:00 – 06:58:24:00
Q. When you thought about kindergarten and elementary school for John, again were you looking at
those special programs or did you think that….
A. Well, we thought he would go to the same school we visited um because that would have been the
place he would have gone and we knew that there were some [good] teachers there because we went
to all the classrooms and observed the teachers. Some teachers there were really doing a wonderful job.
They looked to be very professional teachers and some of them looked a little bit more like they were
going through the motions but, for the most part, they were doing their best and we thought, you know,
we’ll just fill in the gaps if we have to, but we were kind of hoping or wishing that he could have
continued in the regular school. Oh kindergarten, you’re talking about. We did enroll him in regular
kindergarten. I’ll tell you how that happened. When he was born I put him on the waiting list for it
because you had to get your child on the waiting list in order to have a chance for them to be accepted.
It was a very small school and when I did that I talked to the director and told him that we knew John
had a disability, but didn’t know the severity so please let him on the waiting list until the time came and
10
we can talk about it. So after his successful venture into nursery school I went to see the director and
suggested that maybe we needed to think about putting John in regular kindergarten, and he wouldn’t
make the decision himself. He let it be up to the kindergarten teacher, so John went to visit the class and
that afternoon when I went to pick him up the kindergarten teacher came out and said “Mr. Angelo, I
really want John in my class.” So she had him there and he was, he enjoyed it so much and everybody
[liked] having him; the teachers, the other kids, the other parents, the parents of the other children. But
we knew that he was probably going to go to that other [Special-ed] school, but what we didn’t know
was the university school staff and the intermediate [unit] school staff got together and permeated a
proposal and got funding to start a special-ed program at the university school, and it was a very
inclusive program. There were only seven grades counting kindergarten and there were 13 children in
the program spread throughout those seven grades. Only one class for each grade so there was one-tothree in each class. One resource teacher and one aide and the occasional graduate assistant from the
university would get a little bit of training there. It was wonderful. It was unbelievably inclusive; 65
percent with regular children.
06:59: 15:00 – 07:00:26:10
A. He had an opportunity to rub shoulders with other children kind of like the kids in his own family and
they accepted him and again, just as in kindergarten, the parents of the other children… they even came
to some of the meetings and I would give an occasional talk about John, and they would come to the
meetings and they would stand up unsolicited and tell the audience yes, my child is in that class and I
can tell you that my child has benefited as much being in that class as John has benefited from being in a
regular classroom. I don’t know why we can't find that kind of program universally across the country
because the [PARC Consent] Agreement called for education in the least restrictive environment. The
Consent Agreement made it very clear that least restrictive environment meant being educated with
children without disabilities to the maximum extent possible and to have the support necessary for
them to be able to be there. So we’re still working on that uh a good many years later.
07:00:26:15 – 07:01:04:05
Q. You said that parents spoke to the fact that their children benefited from being a classmate of John’s.
How so? What were the benefits?
A. Well, John has some gifts that, you know, you just wouldn’t believe. He’s a very congenial kid. He’s
very pleasant, very kind. He never shows anger, ever. I’ve never seen him show anger. And just being
around him was a good experience for their children. He was a good role model himself, as well as their
children being role models for John to follow. I think that’s what she was getting at. John was just a
pleasure to be around.
07:01:06:00 – 07:03:20:15
Q. Were there ever times, um, when you doubted John’s ability, things that he could do and he proved
you wrong?
11
A. Yes. Yes and I hang my head in shame because I just gave a speech about being stereotyped and yes,
there were, and it was me stereotyping John. He came home from school in about 4th grade, told his
mother he wanted to learn to play the piano, and when I got home from work Shirley suggested she get
him a teacher and I said “What? No way.” And she said “Joe if it were one of the other children you’d
already have a teacher for them.” So I got on the phone and I got him a teacher and took lessons with
him, because I wanted to be able to help him between lessons, and also I wanted to learn to read music
myself because I hadn’t had much experience with that. So in two years John did learn to transpose the
note from the sheet music to the keyboard, play a melody line with his right hand and a harmony line
with his left hand and after two years he quit just like the other children did and hasn’t played it since.
But he showed me, boy! I mean and I felt, I have to tell that story any time I talk about John because I
want people to know stereotyping is a natural thing. It’s built into us. We have a tendency to do things
like that but I was - I felt guilty for a while, but realized that it’s part of human nature. But I’ve never
stereotyped him again, and anytime he wanted to start something I was the first one to say “yes, you
should sure try that.” In fact, when it came time for him to learn to drive when he was about sixteen, I
suggested “John you bring the book home and I’ll help you learn the answers to the questions so you
can pass that part of getting your learners permit and when you get your learners permit. I will sit beside
you in the car and try to teach you to drive.” But John opted on his own, and in his own wisdom, not to
drive.
07:03:24:00 – 07:05:25:00
Q. I’m wondering if John’s school experience which was so positive from your description through
elementary school changed when he went into high school.
A. Yeah. I need to tell you something else, though, that happened a couple of times - that happened in
the elementary school. John’s IEP meetings were terrific. Shirley and I were the experts, and we went
into the meeting knowing that they felt that way about us, we were the experts. Not that we were, but
they actually treated us that way. So whenever they wanted to make a change maybe in what we were
doing and thought there was maybe going to be some resistance on our part, they made sure they had a
rationale. For one thing, they did stop the speech therapy when he was in 4th grade because he had not
made progress for a couple of years and there were some other things that they thought would be
better off for him to learn. And besides he was fairly, clearly understood - the other children and had no
problem understanding him so we said “okay” to that one. But the other one was when he was in 2nd
grade they wanted him to, at the end of second grade, they wanted him to repeat and the rationale they
gave was that he was almost reading at grade level, but not quite, and if we could get him to read a little
bit better before he left second grade then maybe his peers would pull him along and keep him on grade
level, or maybe he’d just be able to on his own stay at grade level. So we weren’t certain that that was
the right thing to do but we acquiesced on that one and he did repeat second grade, and at the end of
second grade he was reading at second grade level and he did read at second grade level until he
finished elementary school. I don’t really know how well he did after that. We never got an inkling of
what his grade level was but, you know, in the United States about approximately 60 percent of the
people don’t read much better than 6th grade level.
12
07:05:26:25 – 07:09:49:00
Q. It’s interesting that you describe the IEP as a very positive experience. Do you think in all of your time
served with the ARC and hearing stories of other parents that that process is as positive for other folks?
A. Well, it wasn’t even as positive for me after we left the elementary school. I’ve come to know through
my own advocacy work, working with parents and trying to get education programs for their children
that sometimes they are the only one in that room that doesn’t have some fancy letters after their name
and they feel intimidated and don’t realize that they truly are the ones that know the most about their
children. And so they don’t speak up well enough and that’s one of the things the Arc was able to do. In
the early days I was more or less the Arc president and the educational advocate all rolled up in the
fundraiser, and doing it all, so I got experience working with them. In some cases the professionals
themselves, whether they knew it or not, really, truly intimidated the people instead of making them
feel comfortable. John’s first IEP at his junior high school, one of the guidance counselors came in and
started spouting off percentile ranks to me. “John is in the second percentile in English and first… fourth
or fifth in history, maybe the tenth percentile in math. He’s going to have some difficulty.” And I asked
them “excuse me?” I would say - I did say. “What are the normative groups for those percentile ranks?”
And they didn’t know what I was talking about, so then I went on to say “Well, you know, you really
shouldn’t interpret percentile ranks unless you know who the child is being compared with. If he’s being
compared with students who are going to go on to college, maybe Yale or Harvard or engineering school
and you tell me he’s first or second percentile I’ll say yeah, sure but if you compare him to children with
disabilities or even maybe with the general education population at schools with kids that aren’t going
to college, his percentile ranks would be markedly better than that.” Well from that day on, percentile
ranks were never mentioned again. I just had that kind of knowledge and understanding through my
career and through my work with the Arc that most parents don’t have.
That wasn’t the first time that [I felt I was being] intimidated. Even before that, when we were talking
about his placement in junior high school, the schools, the school district psychologist wanted to put
him in what was called a “trainable” class which I knew from my own experience by then meant that
they didn’t think John could read very well and I said “no” and they said, “Well you're not being very
perceptive. You need to know more about this don’t you think?” and I said, “In what way?” And they
said, “Don’t think you should visit the trainable class to see what it is like?” I said, “I’ll do that. I don’t
think it’ll change my mind but I will do that.” So I did and they were reading but they were reading
“men”, “women” and “exit.” That was their vocabulary that they were reading. I’m sure there were
other things but that’s what they were practicing that day. John, not too many days before I visited that
class, read something from the front page of the paper to me about astronauts, so I called the lady up
and I said “No. If you insist on that and won't put him in the other class” they called it the “educable”
class, “we will go to due process. We will go to court.” And then they acquiesced. And I do believe that
her reason for wanting to place John in the educable class was that there had never been a child with
Down syndrome before in the educable class. So what was she doing? She was stereotyping and that’s
13
what I meant by what I said earlier that stereotyping is one of the most damaging things that can
happen to a person.
07:10:12:04 – 07:10:51:10
Q. So I wonder, Joe, if you could tell me a little bit about John’s experience in high school? You described
his experience in elementary school certainly as being very connected with his peers. Um did that carry
through to junior high school and high school for him?
A. Yes it did, actually, because of John’s interests. When he went to the junior high school, the 65/35
ratio got turned around. He was in the self-contained classroom for most of the day and about 30
percent of the day he was in regular classes in something which was called “mainstreaming” in those
days.
07:11:18:25 – 07:13:54:00
Mainstreaming is just a kind way of saying “dumping” because he was actually just placed in those
classes with no accommodations whatsoever. No aides for him, no training for the teachers that he had,
and John was expected to compete with the other children uh without any of those things. Needless to
say he couldn’t really do that much academically but he still made it through a good number of classes.
Some of them were very successful in fact. He was in Home EC and Shop and a course called Tots for
Teens where you learned how to be a babysitter and things like that. So he managed to get in those
classes and be associated with regular kids but he also had a very big interest in music so he joined the
choir, the choruses, and he was in glee club and he wanted to be in a musical. So when he was in, I think
it was 8th grade he wanted to be in a musical called Lumberjacks and Wedding Bells. And so he tried out
for it. His brother Tom got him ready with a song. Tom was a really good guitar player and singer, and
got him ready for it. John tried out and the teacher, the fellow that was producing the play wanted to
give John the chance, so John was selected for the cast and the chorus and, of course, John is kind of a
ham anyway, so he enjoyed every minute of it. The kids enjoyed every minute of it. The teachers
believed John could do it and both the play director and the musical director liked John because John
was in the chorus. He had the advantage of having had some musical training and he was, he did very
well and so the second time he was like I think in 9th grade he tried out again, and so he was in two
junior high school musicals all together and four senior high school musicals. One of the things that
makes my heart feel good is, once in a while, we go back to see a high school musical and almost
everyone we’ve seen since John has graduated has had at least one child with a disability in the cast. I
like to think that maybe he had something to do with that. So yeah he had not as nice a situation as he
had in elementary school but, because of his own choices, it was as inclusive as it could have been in
those days.
07:13:54:25 – 07:14:48:00
14
Q. I’m very curious about what you were describing in terms of mainstreaming. Why did the supports
fall away at that point for John and other kids?
A. They never existed. It wasn’t that they fell away. They never existed. There were no inclusive classes
in junior and senior high school in our school district and I don’t think they were in existence very much
anywhere else because people didn’t really enforce the court agreement as it referred to least
restrictive environment. The public schools could get away with it and so they did, but now it’s a little
different, you know? We’re ready to invoke the law now and so, I think, there’s much more inclusion.
There are aides and there are supports. Actually you should never use the word “inclusion” without
putting the word “supported” in front of it because inclusion without supports is dumping.
CHAPTER FOUR: EMPLOYMENT FOR JOHN, JOE’S ADVOCACY WITH ARC, VISITS TO INSTITUTIONS
07:14:49:05 – 07:19:28:12
Q. I know that today certainly the transition from high school to adult life is often very challenging for
young folks with disabilities. Was it challenging for John?
A. Yes. Yes it was but wasn’t a challenge that upset us in any way or John. From the time he was in junior
high school, we wanted them to begin to give John some education that would help him to get a job and
we would mention it every year and they always throw a bone in the IEP for us but mostly nothing
happened from it and uh we managed to get John some job skills by enrolling him in a manpower job
where he was a camp counselor for Salvation Army Day Camp, [we] did that on our own. And he did that
for three years, I think, which was really a wonderful experience and he also - we were concerned that
he, that maybe they were being condescending and having him there to help us out, but I talked with a
supervisor and he assured me that John was maybe the best counselor that they had in camp because
he was conscientious about what he was doing, more than the other kids. But there was no vocational
training for John at all and that went on and on and on and I knew that at 18 he would have the option
to graduate, but he had had no job training aside from what we were able to muster up for him so I
insisted… by that time there was a bill in the legislature that was going to require transition for kids and I
think it was supposed to start by the age of 16 in that bill but we got it down to 14 before they were
done with it. And I had a draft copy of that bill so I went to and I dealt with what was one of John’s
possibly last IEP sessions before he was 18 and said we would be interested in getting some vocational
training for John if he stayed in school, and I had a copy of the transition bill in front of me and of course
all the other special-ed regs. And so I made a suggestion. Shirley and I had talked this over. We thought
John could learn better hands on then he could from just sitting in a classroom and learning about work
and they had a General Ed program for all students who were not in academic or business curriculum
and that general curriculum, they could go to school for half a day and then go to some job site to get on
the job training for half the day and we suggested maybe that would work for somebody like John - and
they were reluctant. It had never been done before so they were reluctant to try it. So we finally, at that
meeting, got an agreement to have a six week trial of that. They provided a job coach. I was able to get
for him additional job coaching from Office of Vocational Rehab because he was 18, and also from the
local workshop and it’s called ICW Employment Services. They had a supported employment division he
15
graduated then at the age of 21 so his higher education in those years from 18 to 21 but he was still
enrolled as a high school student. He had in those three years, about five or six different job
experiences. He worked in a nursing home, he worked at a toy factory, at a supermarket, he worked in a
voter registration office. He had those experiences and as a result of that whenever he graduated he
had actually enough experience that he was able to build a pretty good resume and some of the people
he worked for in his trial experience actually tried to hire him but for some reason or another, we
turned them down. One of them was a job at Giant Eagle Supermarket and it was in the summertime
when things were slow in Indiana and we had no idea whether they would keep him on after that. And
the other one was with the County Office of Voter Registration and they actually put him in the budget,
but the county commissioners lined him out because of short funding. but in December he got his first
job.
One of the problems we had before that period though was the reluctance of people to give John what
he needed.
07:20:20:00 – 07:21:58:10
Before he got the vocational training he was bringing math homework which involved mixed numbers
and I tried to get them to be more realistic about what he needed to know, like how to read a bus
schedule, how to tell time accurately so he could be on the bus schedule on time, how to read a map so
he’d know how to get there. Those kind of… how to figure out a tip when you go to a restaurant, how to
keep your money separated in your wallet. Those things weren’t being taught at all. He kept bringing
home his mixed number problems so I solved that because he began to get all of his mixed number
problems correct. I bought him a Casio calculator that did fractions and I just believed that assistive
technology was where he needed to go. He got his homework done in ten minutes and it was always
right and then he had time to do other things. It was wonderful. John grew up so much in those days. He
made so many friends. He learned work skills. Actually after the first six -week program they wanted to
terminate it because he wasn’t doing so well after six weeks but I told them, “Look what do you expect
in six weeks? He’s still learning something, so let’s give him another six weeks. It can't happen
overnight.” After the second six weeks the same job coach that was critical about his accomplishments
in the first six weeks said, “My goodness, he’s turned it all around. We need to find new things to teach
him.” So John had a lot to do with it himself.
07:21:59:05 – 07:22:39:20
Q. So to what would you attribute to that success? What about John allowed him to turn it around in six
weeks or so?
A. He so badly wanted to work. He just wanted it so badly, and I'm sure that almost everybody that
hasn’t worked would like to work and, once they started working, they’d start feeling better about
themselves. They’d start to really feel like they're making a contribution. Just so many reasons
employment helps a person, and John felt that. He really began to feel good… and he was able to get a
little paycheck even though he was still in school so I think he liked that part of it too, but he made, he
made a real effort.
16
07:22:44:15 – 07:24:42:10
Q. So Joe, after John graduated high school, began working, did that free you up a bit more to focus on
some of the advocacy work you’d been doing with the ARC or in other areas of the disability
community?
A. Did it free me up more? Probably not, because I was doing those things on top of everything else to
the extent that eventually I suffered exhaustion… from exhaustion. I had to be - I had to back off of
everything for a couple of years so but then whenever I got better I went right back to my bad habits of
burning the candle of both ends, so probably not. My focus did change a little bit from John, although he
still remains, of course, in my primary concern, to other people and even other types of disabilities. But
while I was still working at… in my job as a college teacher I continued to focus on helping people with
disabilities. In 1992, let’s see John had his job in 1993. In 1992 I was the president of the State ARC and
so I think it was probably a good thing that John didn’t need so much of my attention anymore because I
was attracted to so many things that were going on then. There was a big push, for example, in support
of employment then and I hired a fellow from Temple University. I can't remember his last name, that’s
age. His first name was Tim [Vogelsberg]. He chaired my supported employment committee and he was
magnificent, and anything was possible as far as he was concerned and I bought into that philosophy. I
felt that everybody should have a chance.
07:24:42:11 – 07:26:14:25
Q. Is it possibly Tim Vogelsberg?
A. Yes! Thank you. I tried to remember his name yesterday so much. Is he still working?
Q. I believe out west but I don’t know for sure.
A. Well, anyway, so I was so focused on supported employment that some of my fellow ARC people
thought that I was advocating for the closure of all sheltered workshops, and I wasn’t but I visited
sheltered workshops when John was approaching the end of his schooling. You know, I even took John
with us to see what it was like and see if he would like to be there. John made it very clear to us, and I
already knew it wasn’t what I wanted for him, but John made it very clear that he would rather stay
home than go there. He saw what was happening and they were not doing meaningful work for the
most part, and many of them could have been. Now I think it’s much better. I think there’s a lot less of
that going on. So I actually got some pretty vitriolic letters from some people who, in the ARC, who were
running sheltered workshops thinking that I was looking to close their workshops. What I was hoping to
do was get those people who couldn’t get competitive employment out of the workshops to
accommodate the waiting list for people trying to get into the workshops but, anyway, if you’re going to
be an advocate, sometimes you have to take some lumps.
07:26:15:00 – 07:27:05:15
Q. Why do you feel parents resisted their children moving to competitive employment?
17
A. I think for the same reasons parents place their children in institutions; the lack of knowledge, the
lack of understanding, they fear for their children’s safety. In the matter of institutions, there were
people who feared for their children’s safety without realizing that most of the institutions they were in
were extremely unsafe, but in employment it was the same thing. They were afraid they were going to
be mocked, made fun of them, all of that, by the bosses. If they made a mistake and lose their selfesteem and of course the reverse is true; you gain self-esteem in employment.
07:27:06:15 – 07:32:35:10
Q. You mentioned institutions and I did want to ask about that because certainly in the early nineties
when you were serving as president as Pennsylvania’s association or Pennsylvania’s ARC I’m sure it was
called by then.
A. Mm-hmm.
Q. Certainly throughout the state and in particularly the west ARC was working very hard to either
improve conditions in institutions or even close institutions such as Western Center. I was wondering if
you had personally visited any of those centers, and what are your recollections of those visits?
A. Yes. I’ll tell you a couple of things that I did. I went to Embreeville Institution in - near Westchester,
and that one was pretty much a done deal. We were pretty sure the state was going to acquiesce and
close the institution but the parents were in a uproar, so I went out there and talked to the parent’s
association, the parents group. Actually Paul Stengel from Montgomery County and I went out there.
And Paul was kind of the bad cop and I was the good cop and we let the parents know the institution
was going to close, and one of the reasons we wanted to close it so badly was they had an incident there
where somebody was pushed down the steps in anger and had a couple of broken legs because of it. We
met with the parents group. They were talking about how their children would be unsafe if they were
put into the community, but they wanted their children in Embreeville because they felt they were safe
there, and they were not. I mean it was just clear that they, they kind of had shutters over their eyes.
The other one was at Western Center and I was on something called the Western Center Task Force.
Now I wasn’t quite president yet, when I had my first visit to Western Center. Charlotte Twaddell was
the president [of ARC of PA] and she put me on that task force, and she might have even made me Chair
I think. And we went and visited Western Center one spring day during a NCAA basketball tournament,
you know, and apparently the people who worked at Western Center were really interested in watching
basketball. It was a beautiful spring day. Nobody was outdoors. We were able to easily get into the
institution unannounced without being noticed too much at the outset. Of course once we were there,
the phones began to ring all over [the]campus, I’m sure, but we found the people in day rooms laying on
pallets, staff watching the basketball. Supposedly the residents watching basketball but they didn’t seem
to be watching basketball. Some of them were lying in their own feces. The stench was horrible. It was
just a very, very bad experience to see the way they were treated, and that made me understand
something about institutions, how they had evolved. To my way of thinking placing that person in an
institution was nothing more than incarcerating them because they had a disability. They may as well go
to jail. They had no life. I watched them that day at Western Center eat. They took them into the
18
cafeteria, fed them all in about fifteen minute sessions; three sessions. In and out, in and out, in and out;
a couple thousand people fed. Many of them had no teeth, so most of the food was pureed. I’ve eaten
pureed food for one reason or another in my life. I didn’t like it at all, and that’s what they got as a
regular diet because they had no teeth. Found out that in many cases their teeth were pulled instead of
being fixed. In those days there were a couple of scandals that occurred at other institutions. Some
people were being kept in cages. Some people were being herded with cattle prods to get from one
place to the other. At Western Center they had large key rings and they used to use those as like little
instruments to move people down the hallways. It was just horrible and I knew that I had do something,
that we all at the ARC had to do something to see that this stopped, so we did sue. The task force
recommended it. We didn’t sue to close it. We sued to improve conditions and sued - in the settlement
agreement which eventually we were able to obtain. We insisted that anyone who was residing at
Western Center who was capable of living in the community should be moved into the community
within a short period of time knowing that full well that that probably meant everybody that lived there
because over the years. I’ve probably visited institutions 40 or 50 times and I don’t remember seeing
anybody who wouldn’t have been better off living in a community near where their hometown was.
They could all live in the community. There’s no excuse for it.
07:32:37:00 – 07:35:06:00
Q. Were you very firmly convinced that all could live in the community? I know that many parents were
concerned that their child with significant disabilities might not be better served in the community. Did
you feel differently?
A. Prior to all of those institutions was Pennhurst in 1972, and they had the same problem. Parents did
not want their children to go. They did a study and at the outset they surveyed the parents and 90+
percent of them thought their children would be better off in the institution than in the community and
they were afraid for their safety and other concerns; health, bad examples, mistreatment, abuse. Seven
years later they did another study. It was a longitudinal [study] of the same parents and now 90+
percent I think it was 98 percent if I’m not mistaken, but I might be off a percent or two, of those
parents said their child was better off in the community; much happier, feeling much better about
themselves, and they were so happy to see their own children happy so yeah, I mean there was a lot of
evidence that we could bring to those parents in Pennhurst and in Western Center but there were still
some who were adamant about keeping their child there and you know a lot of people in the ARC that
wanted to close couldn’t understand these parents but I could because, in those early days, when I told
you I was in that horrible funk. I don’t even like to share some of the thoughts I had about John. If I had
to make a decision say in the 2nd week I might have said yeah, he’s bound to be better off. I wasn’t
thinking rationally. I was thinking as a very wounded human being. I think some of those parents that
made those decisions did so under those circumstances and its unfair now to criticize them because
they want their child to stay there. They made that decision. They’ve been satisfied with their children’s
lives up until this point and now somebody wants to tell them they did something wrong? No they didn’t
do anything wrong. They just made a choice and they're now trying to stick up for it. It’s not that they
did anything wrong. It may have not been the right choice but, back in those days, don’t forget - there
were no community supports either. It’s a totally different world now.
19
07:35:08:00 – 07:37:05:15
Q. Again I’m wondering how those two radically different positions could live side by side.
A. Well, they really can't. My feeling was, in those days, was that every person in here needs to go and I
don’t care what their parents think, but the other feeling I had in addition to that feeling was a
humongous amount of compassion for those parents - and a lot of my colleagues didn’t. I mean they just
thought, some of them thought, the parents were out of their gourds, you know, but they weren’t. I
mean, they did what they thought was right and now they're defending their choice that they made
years ago, in spite of the evidence. I know they were looking- not looking at it clearly, but that doesn’t
mean that they were mean or wanted their kids to be in danger or wanted their kids to live in a terrible
place. It doesn’t mean that at all. I think you had to have… the ARC and myself as an advocate advocates
for people with a disability, not for the parents. We advocate for people with the disability but we can't
forget the parent’s role. They are the parents of these children, and so we must love them, and must
care for them, must have compassion for them even though we’re doing something to their children
that they don’t like - and we must be ready to be sued over it. We must be ready to be castigated over
it. {we must be willing to be] called names over it by those parents and still like them anyways because
they think they’re doing the right thing. They're not bad people.
07:37:06:15 – 07:38:49:25
Q. An attorney who was involved with Pennhurst litigation said to us that Pennhurst represented a
broken promise to parents. Would you agree with that assessment?
A. Yeah, yeah. You know and also, I do believe that there were people who worked in the institutions
that did their best. I mean they did everything they could possibly do. It’s just a model that doesn’t
work. I think large conglomerate settings for anything is not probably a good idea because when you
have certain people who are in supervisory positions, after a while they stop thinking of the people
they're working with as people and they think of them more as bodies than as people. They get, develop
what I called the herding instinct, herding: H-E-R-D-I-N-G. They herd people along, you know? The cattle
prods and the key chains because that’s what you do whenever you have a large group. You can’t just
tell them all to move because they won't all move anyways so you herd them along. It’s inhumane but
some of the people that work there - - and even now… I visit nursing homes now. That’s my new… that’s
my new, my new stroke. I see the same thing. I see people who work in those places doing the best with
what they got. Lots of compassion, lot of caring but some of them are not doing the right things because
they just don’t think they can or are overworked. They don’t have enough hours in the day to do the
right thing.
07:38:51:25 – 07:40:56:15
Q. You mentioned that you’re visiting nursing homes. Is that in relationship to your work in the disability
community or something different?
20
A. It’s something different because my father was in a nursing home for six and a half years after a
massive stroke. He couldn’t even swallow water. He couldn’t help to even change [his] position in a
chair. He couldn’t, he could offer no help. My mother-in-law was there too because in her last five years
she became paranoid and frightened 24/7, so she needed 24/7 care. And we did it, as long as we could,
but we could no longer afford the 11-7 shift and we had to put her there, and we knew that there
needed to be some changes made and we’ve seen some changes occur in the nursing home business. So
no, it’s not related to the disabilities, however, there are some similarities, not similarities, some real
strong linkages. Sometimes when we go to the nursing home we are amazed at the gifts that people in
those nursing homes can give us. Even though they are bed ridden they are examples to us from day one
of patience, of perseverance, of endurance, of kindness, and it’s just a very, just a different thing that
the workings of the person with the disabilities although they too have those very same qualities. They
have gifts and we don’t recognize it. When I leave the nursing home on Tuesdays, Tuesday afternoons,
often times I’m given the farewell, “God bless you”, and I always say, “Well he just has because just
witnessing what I see there is a blessing to see.” I get that same feeling when I see a child with a
disability grow into a man and get a job and get to work and be proud of himself. God blessed me for
helping that happen? No, no. I’m already blessed.
07:41:37:00 – 07:43:41:25
Q. As a leader of the ARC in a time that was very divisive, how was your leadership able to influence
members of the ARC? Were you able to help people find common ground for instance?
A. That’s one of the things that I’ve been given credit for is that I’ve been a great mediator and I think
some of it has to do with trying to mediate the arguments my own children had as I was trying to raise
[them]. Sometimes it’s been with five teenagers at one time. Yeah, I just - I can't get down on people,
you know? If like they have the opposite view from me, I’m not going to say they're no good. I’m going
to say “I love you” anyway. Let’s get together and work this out and I… there were some extremely
confrontational meetings in the ARC during my presidency where we were pushing for supported
unemployment, inclusion in the schools, and the closing of institutions and there were camps on both
sides of all of those issues where we had to get together and meet in the… one thing you have to
understand is back in those days the board of directors of the ARC of Pennsylvania was about seventy
strong. Every chapter in the ARC sat on that board in addition to regional vice-presidents and then with
the executive committee and board officers. When we had a board meeting it was, we weren’t always
there, maybe it was only fifty but it could have been as many as seventy-some. So you have all sorts of
diverse viewpoints and you only have a limited time to discuss things. I think one of the things I brought
to the table having been a teacher and having to talk to large groups many times uh was the ability to
listen and know when to cut off debate and try to get us to get to common ground and do so without
any animosity after we gotten there. I think that was one of the things I brought to the table but even
more than me there was a president after me, Ed Titterton was his name, I think. I think I gave you his
name. Ed Titterton who had my mediation skills beat by a ton. But yeah those days that kind of skill was
important.
07:43:52:00 – 07:46:51:25
21
Q. How did you learn how to be an advocate?
A. At the ARC. There were people in the ARC who were my teachers. Some of them unknowingly and
some of them consciously mentored me. Bill West who was the Executive Director at the time, he was
an ardent advocate and he didn’t care what he had to go through and what he had to put other people
through to get what he needed for our people, and I loved him for that. Of course it wasn’t too realistic
most of the time when you’re dealing in political it doesn’t happen that way but Bill, he wouldn’t give up
an inch. He knew his people were wonderful people and that they needed some help and he was going
to get it for them. So he taught me something about sticking to it and never turning your back on the
goal, and I loved him for that, and there were other people that taught me things about patience, about
how to be strong. When I was president there was a woman who I admired so much, Teddie Leiden,
who made it her business to write to me every week and she would tell me what I did that she didn’t like
- but she always told me what I did that she liked too, you know? It was always something at least a little
bone at the end of her letter that she would give to me to make me not lose hope in my ability to learn,
but she taught me so much in those letters and gave me so much confidence. Charlotte Twaddell who
was there during a difficult time taught me a lot about relying on other people to do things and giving
them their head to do what she wanted them to do and not interfering. She just gave it to you and you
did it, and that was fine, and she taught me to have courage to do that too with some of my
committees. So and people were so hardened. It was their life. I mean Marty Murray who was in
Philadelphia, worked in developing community services for people. I think he gave his life to the cause.
He died kind of unexpectedly. He was fairly old but still he still seemed to have a lot of energy, and one
day he was gone. Marty gave it all, gave it his all, and I could go on and on. There’s just so many of them
and today there are people; Marsha Blanco here in Pittsburgh. What a mentor she was to me. She told
me how much she respected me but the fact was I knew that she had much more knowledge than me so
I picked her brain on almost every issue. And out east there were people like Paul Stengle and some
other people who I relied on. People who are still active today and still working today; so many people
like that.
07:47:22:00 – 07:48:43:00
Q. You described the board as being seventy plus people at any given time. How were they able to
accomplish so much despite all these differences?
A. I really believe we loved each other. We were in the same boat and we loved each other, and we
loved the cause, and we weren’t going to let differences between us scuttle our ship. We were going to
still go forward. I really believe that’s what held us together. It wasn’t… It was nothing more than the
love we had for our kids that held us together, really ,because it gave us those feelings. We’re going to
love you because you and I are thinking about the same thing. We want our kids to succeed no matter
how it was. I remember meetings where we would be arguing vociferously and after the meeting we’d
go out and hug each other and have a drink with each other and chatting and be the best of friends. We
had that ability and I think it was the cause that gave it to us. Now it is not that way anymore. We have a
streamlined board of directors now and I think it’s much more efficient, but we had a lot of fun in my
day.
22
CHAPTER FIVE: JOHN TODAY, ADVOCATING WITH JOHN, REFLECTIONS AND INSPIRATIONS
07:48:44:20 – 07:50:45:25
Q. I hear that you spend a lot of time these days with a wonderful young self-advocate named John
Angelo. I wondered if you could tell me a little bit about you and John came to start advocating
together.
A. The - the nursing department at IUP [Indiana University of Pennsylvania] had what was a called a
nursing seminar and, shortly after John was born, somebody found out that he was my son and that I
knew something about Down syndrome, so I should talk to the nurses about Down syndrome. Needless
to say I was a novice, but I educated myself in a hurry and went in and gave a talk and every year they
got better and better and eventually they produced a film about John called Guess What Johnny can
Learn, so I would take that film to the student nurses and let them see that film and I did that for several
years but then John, of course, kept on growing and he became a teenager and then a young adult and
this continued and so finally, one day, I told the lady who was organizing the seminars that I thought it
was about time we gave up the videotape and let her hear it from the horse’s mouth. So I worked
together with John and put together about a ten-minute presentation for him to give to the nurses and
then I would follow it up, and that eventually evolved into now a half hour presentation with about a 45
minute to an hour follow up by me. We’d done training and we’ve just changed heads left and right. We
were talking about stereotyping early. In those meetings every time we go, it doesn’t matter who we’re
talking to. It can be parents, it can be transition coordinators, and it can be people who provide services,
wherever we are, employment people… John blows the stereotypes out of the water. They change their
minds immediately upon watching John. He’s just an amazing guy. Also the best golf partner I’ve ever
had.
07:50:49:05 – 07:53:26:25
Q. I wanted to ask you a little bit about John’s life today. Um, where he’s working, where he’s living…
A. He works part time at Gatti’s pharmacy in Indiana County. He has an assortment of duties in a general
merchandise pharmacy store. They have a gift shop and a café and then a pharmacy, and he does
maintenance work there. They would just call him the store assistant. He works four days a week, about
a half day each. Cut his hours back significantly back in 2008 whenever the crash came, and he never
really replaced those hours, but John’s so busy he doesn’t really need any more hours. Loves his work.
The people who work there love him too. He has so many avocations too. It’s the, he enjoys, he loves
sports and I mentioned golf a little earlier. He loves to play golf. He played… he was a special Olympic
champion at [alternate] shot golfing with me as partner. And we beat a golf pro and his daughter for the
gold medal, Special Olympics gold medal. The happiest golf day of my life! I really enjoyed that day. But
he tries… he waterskies, not waterski, he kneeboards. He - and as far as being an advocate he loves to
talk. He’s a really good public speaker and he’s kind of a ham so he really enjoys it, but he loves to talk.
He’s - he walks away from his notes and gestures and ad libs and surprises me every time we speak.
23
Sometimes at the end of his talk he talks about his future, and I never know what’s going to come out of
his mouth. When I mentioned about his being a good golf partner he really is. He never gets angry,
never throws a club. If he gets a bad shot it’s okay. He’ll wait for the good one to come. He’s active in
church, sings in the choir. He belonged to the Kiwanis, belongs to the Knights of Columbus, and he’s not
just a token member. He does… participate in their meetings. He does their advocacy work and their
community service work. He continues to love to read, continues to love music. Just a regular guy.
07:53:39:10 – 07:54:50:25
Q. You’re describing [John’s] rich life in the community. Is John still connected with his siblings?
A. Yes, very much so. Two of his siblings have suggested that when we’re not around anymore they
would love to have John. I think he wants to do that. So he remains connected of course with those two
in particular, but he’s close to all of his brothers and sisters. They have him for weekends or take him
with them on a trip or he’s always doing something with his... and his 22 nieces and nephews almost to
a person will tell you he’s their favorite uncle. He’s generous with them. Every birthday he gives them a
nice present. Well he works, you know? He can afford it - and they just love to be around him. He plays
games with them. I mentioned his athleticism. He’s golfed with every one of them. He golfs but other
things too. Just lots… whiffle balls, games in the backyard, and stuff like that; stays close.
07:54:52:10 – 07:56:06:15
Q. Joe I’m wondering, I don’t know if there is an easy answer to this question but I think of all the work
that ARC, that you through ARC, many people have done to close institutions and yet institutions are still
present in Pennsylvania. I believe we have five institutions still open in Pennsylvania. Why are they still
open today?
A. You would ask me that question? I have no idea! There’s no need for them. They need to get rid of
them. They’re a horrible model, they're extremely expensive, they're depriving people of a much better
life, and I know there’s some parents who want, as I said earlier, want their children there because they
feel they’re safer but a lot of those people there now their parents are probably no longer alive. I don’t
know why. I think it’s a political thing. There are thousands of people employed at those places and it
would be a political bombshell to automatically, all of a sudden lose their jobs. I don’t know why. I have
no idea why. It’s a model that’s had its time and it didn’t work so let’s get rid of it. A lot of states in the
United States have no institutions and we should be one of them.
07:56:11:05 – 08:00:21:05
Q. I know that some fairly recent regulations, the 6400 regulations for community homes have sort of
changed what the standards for community homes could be and I wonder if you were or other folks
connected with the ARC worry that group homes will become more institution-like?
24
A. I think ,in a way, they already have. For example, many people living in group homes have many
fewer choices to make about what they want to do. They may want to go to church on Sunday but the
rest of the group is going to a baseball game, so they go to a baseball game or it could’ve been the other
way around. I think there’s a lack of choice. Many times the wants and likes and dislikes of people who
live there are not addressed in a fair way. So in that way they have some qualities about them that are
institutional, but they are in a neighborhood. They have a neighborhood life. Most of the time they are
reasonably close to their own family so they have better contact with their family so they’re better than
the institutions, but you're right. There are some changes that need to be made. I served for years on a
group home that was interested in bringing what’s called a L’Arche home into the Diocese of
Greensburg. It’s - it’s not a Catholic group but the Diocese of Greenburg seem like they would be
interested in having us start one up there. This is a group home concept where the people who live
there make their own decisions. I visited a few of them. I was very inspired by my visits to those places
and fortunately the group that I was with is kind of gone defunct. When we found out how much money
it was going to cost to bring in a group home we decided we better start looking for resources rather
than just continue to meet. When we find the resources we’ll start up again, but that concept of making
the group home more like a family is what the L’Arche home was all about. I think we need to do that or
maybe we can find some other model even different from group homes that does that; that gives
people better lives but you have to be careful. You know, there’s a push for family living for people and
that’s good, but I worried about how we would monitor them and that’s where IM4Q comes in. If we
visit these people who are in family living situations enough times, at least once a year I would say, to
make sure that they're safe, to make sure that they're happy, and then let them have a family life. If
they're happy and they're safe, why mess it up? Fewer regulations maybe, except to make sure of the
safety issues and health and the lack of abuse. So IM4Q, that’s what it’s designed to do and instead of
cutting it back as it seems to have happened lately I think we need to increase it so that we can have
different models of life, and still make sure that they work. You know, when you go to a group home to
monitor and you’re monitoring six or seven people at one time. You go to a family and you only monitor
one. John gets monitored so, because he does receive the services of supports coordinator and
occasional job coaches, so he gets monitored. I should tell you this. At this talk we gave at the end he
was telling the people how he was monitored and he said, “I like to have either mom or dad or both we
me at the beginning in case I get asked a question that I don’t understand. They know how to make
things clear to me.” He said, “But we always have enough private time with them not in the room so I
can complain if I have a complaint.” And he says, “I’ve been with them forty-one years and so far, so
good,” he says, “but you never know”.
08:00:24:05 – 08:02:30:25
Q. Joe when you look back on your career what do you feel has been your greatest um accomplishment
or contribution?
A. I have no really major accomplishment that I hang my hat on because I never did any of those things
by myself. I couldn’t have done… none of those things would have happened without a whole bunch of
people cooperating with each other and going after it in so many different ways. Without the support I
had from the other advocates, without the support I had at home from my lovely wife Shirley to freeing
25
me up to be away from home so much and to tell the kids “don’t worry about daddy, he loves you”. He’ll
be home Saturday, or whatever. Without those kinds of supports I couldn’t have done any of it so I don’t
claim credit for any of it or claim any of it as being my accomplishments. They’re not mine, they're
accomplishments of the whole group and of the people we serve. They're the ones that, you know, I had
a meeting one time with representative Ron Cowell who was the Chair of the State Education
Committee and I didn’t, I just, I said I had a meeting and I didn’t mean it that way. I met him one day,
and I wanted to talk to him about transition at the time and I said, “Representative Cowell my name is
Joe Angelo” and I no sooner said that and he said “You’re John’s dad?” and yeah John had already talked
to him about transition, believe it or not. It was a part of Temple University’s C2P2 program. What an
amazing thing. He knew who I was because he knew John. So we had our talk and it was very congenial.
Many times the people we advocate for pave the way for us by the things that they do, and that was just
one example for John.
08:02:33:10 – 08:05:00:10
Q. Joe, I’m wondering who or what has been in the greatest inspiration in your life or work?
A. Oh that’s really hard. It’s… I would start with Shirley. It would go to the rest of my family. It would go
to all of those ARC leaders who went before me and even those that I never got to knew but knew what
they did.Especially those who mentored me. People like Marsha, Teddie Leiden with those wonderful
letters she wrote. People like that; they were all inspirations to me. I get inspired too, sometimes,
through my faith. I believe my faith has inspired me in many, many ways. I remember not too many
years ago, a couple years ago, I received something called a Humanitarian Award. I’m still trying to figure
out what a humanitarian award is. From the Dioceses that I lived in, the Diocese of Greenburg and I was
going up the steps and I was saying you know what I don’t know why I'm getting this, I don’t know what
it’s about, I didn’t know what a humanitarian is. I’m a singer in my church, I cantor, and that particular
day the song I was cantering, the first few words were “Here I am Lord, I come to do your will.” And I
really do believe that over the years that’s really kind of what I’ve been about. When these
opportunities to serve have been put in front of me I just think that maybe that’s what I’m supposed to
do. I’m being asked to do this, and so I try. Shirley and I both feel the same way. Yeah, we’ve managed
some pretty exemplary things but it’s always been because they were things we thought we should do;
that we were called to do. So you know if you want my biggest inspiration, it’s my faith.
08:05:03:10 – 08:06:38:25
Q. Joe, I wonder for young parents today, parents who by themselves in the position that you and
Shirley found yourselves in - is it forty-one years ago? - with a beautiful child with a disability. What
words of wisdom would you pass on to them if you could?
A. You wouldn’t believe how many times I’ve had to do that; that very thing and it’s gotten easier over
the years, as John got older, because when we do pass those words of wisdom on we have John at our
side and he- he helps people to listen. He helps people to see what’s possible, and all we tell them
26
primarily is listen to your child. Don’t deny him to try anything from… don’t keep him from trying
anything he wants to try, she wants to try. Don’t be discouraged if your child isn’t as abled as you think
John is, because some of them are not, but they still have gifts so make it your job in life to discover
those gifts and you’ll be amazed. They will be beautiful gifts, and whenever they are developed you’ll
have taken a part in it if you allow them to happen. That’s really what we’re supposed to do, even with
all of our children. Look at them, try to determine what their gifts are, some of them will be hidden for
years and years and years and then you'll discover them all at once but when you discover the gifts be
grateful for them and encourage them. That’s the advice I would give.
END
27