Visionary Voices Interview
Charlotte Twadell
June 18, 2013
21:41:12:13 – 21:41:35:02
L. My name is Lisa Sonneborn and I’m interviewing Charlotte Twadell. Am I pronouncing your last name
correctly?
C. Yes you are.
L. I wanted to make sure; Charlotte Twadell on June 18th at the Chester County Office of Intellectual
Disability Services in Chester County, Pennsylvania and also present is our videographer Ginger Jolly and
Charlotte do I have your permission to begin our interview?
C. Yes.
CHAPTER ONE: CHILDHOOD, EARLY ADULTHOOD, AND MARRIAGE
21:41:35:05 – 21:41:47:25
L. Thank you. Charlotte I’m going to first ask if you can tell me your name and when and where you were
born.
C. My name is Charlotte Twadell and I was born in Philadelphia, Pennsylvania.
21:41:48:09 – 21:41:57:03
L. Did you come from a large or a small family, Charlotte?
C. Rather small. I just had one brother two years younger than myself.
21:41:58:06 – 21:43:15:09
L. And can you tell me a little bit about your father? Can you describe him for me?
C. Yes. He was um an accountant with the Pennsylvania Railroad. His dad had also been with the
Pennsylvania Railroad as the station master and so he went right into that field and uh was there for 40
years. And he was, um, the king of the … king of the castle. He was very, a very strong person and, um, a
very good person and a good dad. And um, I’m thinking that uh probably what played a part in his
manner was the fact that he and my mother were married 15 years before I was born and they wanted
children but just didn’t have any children and thought they weren’t going to have any children and
suddenly I appeared. So both he and my mother were a kind of a little older parents and uh, and that
played a part.
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21:43:15:29 – 21:44:19:22
L. What can you tell me about your mother? How would you describe her?
C. My mother, uh, was one of four children and worked in Philadelphia at Wanamaker’s as a book buyer
in the book department before she was married. And funny enough I’ve never, I never thought to ask
wither of my parents how they met and it’s a little late now so I won’t know but they did and they were
married and as I say for a few years before I came along and then two years later my brother came
along. And she was again a very strong person, a very spiritual person, uh. She was a stay at home mom
and I think that a lot of my background would be very, very different from what you would find today in
a lot of cases because when you go back to my childhood you’re going back a while.
21:45:26:00 – 21:46:53:25
L. I wanted to ask you if you could tell me a little bit about your childhood; maybe one of your fondest
childhood memories.
C. Uh, well I had a wonderful childhood, really. Um, my parents were very loving, very stable, um. My
grandmother lived with us, my father’s mother, lived with us until I was 17. And uh I have no, no really
unpleasant thoughts about my childhood. As I look back it was really wonderful. I probably didn’t
appreciate it as much then as I do now but it was wonderful. We used to go away every summer for the
summer to my other grandmother’s home who lived in Wildwood, New Jersey and as soon as school
was out we left, uh, and went to her home. My mother and my brother and I and stayed for the summer
until after Labor day and we really never liked to leave all our friends but after we got there we had
friends there and then we really didn’t want to come home so it was very pleasant. We had so many
experiences at the seashore too that, uh, were wonderful; really wonderful. Yeah.
21:46:53:27 – 21:48:32:05
L. You lost your father at an early age I believe?
C. Yes. Unfortunately my father had heart disease and had had a heart attack when I guess I was about
12 when he had his heart attack. And back in those days, of course, things were very different. He had a
long recuperation and they didn’t have the medical knowledge in those days. I’m going back to 19… well
I’m not sure what year it was that he first had the attack but he passed away in 1949 and uh, that was
very unfortunate. Now I was 17. I had just graduated from high school and I graduated in June and he
passed away in August. It was quite a blow to our family because as I said he was the king of the roost
and he, he uh… I tease and say he was like E. F. Hutton when he spoke everyone listened. But he was
very loving and extremely missed. When he passed away it took a lot of, a lot of adjustment to realize
that he was gone. My mother, however, stepped right up and took over and did very well. My brother
was just 15 so she had a 15 year old boy on her hands to get raised and uh, and I had just graduated
from high school and entered the working world. So she had quite a bit to cope with but she did well.
21:48:33:14 – 21:50:30:04
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L. Thank you. So you said you entered the working world. Can you tell me what your career ambitions
were as a young woman?
C. Well I would certainly liked to have gone to college however my dad made it very clear that if he was
going to spend college money it was going to be for my brother because he was going to get married
and have children and raise them and have to provide for a family and I would probably get married too
but I’d have a husband. So I was extremely upset with that trend of thought but I had to accept it and so
I went ahead and became a secretary in Philadelphia and I worked for a large, well a small company at
first and then eventually a larger company. However I enjoyed singing and I wanted to further a career
in singing. Two of the fellas that I went to high school with started a band and we played the college
dances throughout Philadelphia; for Penn and Temple. And that was a lot of fun and led to a couple of
little stints on television. However, uh, in the meantime, I met my future husband and after we got
serious and marriage was in the works, that sort of put an end to the, and end to the career. I then got
another career and that was singing lullabies for my first child. So that ended, however I followed the
singing throughout life because I sang with church choirs and did a lot of solo work with the church
choirs and that was very rewarding and lots of fun.
21:50:30:09 – 21:51:51:09
L. Can you tell me a little bit about your husband; his name and where he was from?
C. Yes, mm-hmm, he was, my husband’s name was Hibbard Moore Twadell and he was from Chester
Springs, Pennsylvania. He was a country boy and uh, had, came from a big family. He had five sisters and
two brothers and so overnight I had six sisters in law; all local and so it was a big family and lots of
comings and goings and children and very exciting because I came from a small family and I was
delighted to have all these relatives. I think even today my children have like 32 first cousins, yeah, most
of them around in the county, uh, but it was fun. And he was in the restaurant business. He had served
in the Army for five years in the Second World War. He was a bit older than I and uh, he was ready to get
married and settle down and so we did and moved out to the country which is not country anymore but
it certainly was country long time ago. That was in 1951.
CHAPTER TWO: CHILDREN AND DISCOVERING DAUGHTER’S DISABILITY
21:52:02:19 – 21:52:47:00
L. Did you have children?
C. Yes, mm-hmm, um we were married in 1951 and in 1952 our first child was born. His name is Howard
and uh, we were very delighted and very busy new parents and my husband was in the restaurant
business and it was a kind of, he and his brother were the owners and partners but it was a family
operation and everybody was involved so it was, it was interesting.
21:52:47:04 – 21:53:25:11
L. Did you continue to work after you had your first child?
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C. Yes, uh-huh, off and on. I would fill in wherever I was needed and uh, whatever I had to do I would do.
And we just, uh, had the same goals and objectives, I guess, and that was to… we started out in a little
house and of course we were hoping to move into something bigger eventually. And uh we just went
along day by day and did our thing and it was, it was quite successful.
21:53:25:25 – 21:53:54:10
L. When did you have your next child?
C. Uh, let’s see. I think about three years later. Uh, trying to think but it was probably about three years
later. We had a daughter, Beverly, and it wasn’t until she was about two years old that we had
confirmed the fact that she was a mentally challenged.
21:53:56:23 – 21:56:36:28
L. You say it was about two that Beverly was about two when you realized she had a disability. Were
there any signs or any indications early on that Beverly wasn’t developing perhaps the way Howard had
developed?
C. Yeah there were. Having had a child and raised one for a couple of years, uh, I had some idea of the
progression that children make and it seemed to me that Beverly was slow. She sort of did everything
but she was very slow about doing… she was a happy child and not a problem but I was getting more
and more concerned. And so eventually, I had taken her to several… she had a pediatrician and a GP so
forth but I raised concerns but they said “Oh, I think you’re just being an overly concerned mother and
she’ll be fine” and so forth and so on. It got to the point where I wasn’t happy with that answer and so
on my own and to tell you the truth I don’t recall how I found this doctor but I took her to a neurologist
and that was, at that time, that he confirmed my suspicions and said that she undoubtedly brain injured,
probably from birth at some point and we’ve never really had a clear definition or diagnosis. I’ve also
been told that it possibly could’ve been a fetal stroke which uh, I had never even heard of but I know it
is, it does happen. So his recommendation was that it was not anything genetic and that I should think
about placing her in an institution and go home and have another baby and go see her on Sunday and
that was that. So I was, guess I wasn’t expecting to get such a, such a confirmation at that moment and I
left his office absolutely stunned and in shock and uh, was very upset for a couple of weeks.
21:56:37:01 – 21:59:23:28
L. What was that car ride home like?
C. Not good, not good, not good. It was very upsetting. I truly… I hate to admit it but I truly thought
about the advantage of running the car off the road and into a tree and just ending it at that moment
but knowing me I like life too much and I don’t think I really could have ever done anything like that but
uh I was terribly, terribly upset and my husband was horribly upset to see me so upset and we just had
to eventually accept what is and as I’ve often been quoted as saying that someone once told me and I
think it’s true that when something like this happens, when you face the fact that you have a child who
had disabled; first it’s denial. No, no. This can't be. And then secondly it’s acceptance. Well I guess it is.
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And then it’s well what do I do? Now what do I do? And then fourth, well what can I do to help others in
this position? And as I’ve said before there are some people that don’t get to that fourth place but it
didn’t take me long to get through all four, all four situations and so I started immediately to look for,
uh, help. I thought I can't be the only person in the world that has this problem even though it was a
foreign problem to me. And so I started to look around for support and back in those days, in 1956,
Beverly was born in 56 and there was very little available of anything but I did find the ARC of Chester
County and it was of course the Chester County Association for Retarded Children in those days and so I
immediately made contact with them and low and behold there were other people that did have this
difficulty and so I quickly became involved and they were a great help. It was a help just knowing that
there was someone out there to talk to and uh, be supportive.
22:00:01:16 – 22:00:50:20
L. Charlotte, I certainly want to ask you about your involvement with the ARC but I want to go back to
something that you had said, um when you saw the neurologist who gave Beverly the diagnosis of then
the terminology mental retardation, he suggested that you place her. Is that something that you and
your husband considered?
C. No, at the time I was so stunned. I mean there I was with my adorable little girl and just the thoughts
of placing her any place but with me, I couldn’t even imagine. So I was totally dumbfounded and so that
was not going to be a consideration. Not then, that’s for sure.
CHAPTER THREE: INVOLVEMENT WITH CHESTER COUNTY ARC
22:01:04:16 – 22:05:05:08
L. So Charlotte you were talking about reaching out to other parents and you found, um, a local ARC
chapter which connected you with other parents who had children with disabilities.
C. Yes.
L. I’m wondering what that experience was like; to connect and to share the experience of being a
parent of a child with disabilities with other parents similarly situated?
C. Well, it was very comforting. Uh, the fact that you could share your experience with someone else
and it was nice to know that they had some goals at the time because there really was nothing much
around and if a child were just what they called slow, in other words their IQ would be fairly close to
normal, they might be able to get into school then; so on and so forth. But if you had a child who was
more involved there was no schooling, um, at the time and there were no nursery schools and you were
at a loss as to know what to do. And I was, as I said, I was really dumbfounded because I had never really
known anyone personally that had this problem. I remember in my first little house that down the street
there was a family who had a little girl who was mentally challenged and I would see her walking up the
street to go to the school bus and uh she was fairly high functioning, at least able to go to school. I mean
but I didn’t know her and I didn’t know the family. I really and truly was, well I was very young on top of
everything else. I guess when Beverly was born I was in my early twenties. I’m trying to think. Oh
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probably 24 or something like that and as I say, had absolutely no experience with something like this.
So it was wonderful to find, as I sat, other parents and we would talk about it and they were very
interested, at the time, in creating a nursery school, a pre-school type thing and they did and so Beverly
attended the pre-school. Before that occurred I did find a pre-school down nearby town about ten miles
away I guess and so I signed Beverly up for that. I think she went about three days a week but it wasn’t
easy because by that time I had another child. Uh, I had my second son and he would be taking his
morning nap and I’d have to get him up in the wintertime, get his snowsuit on, get him out in the car,
head down for Wayne, Pennsylvania, which is where the place was, and take Bev and then she’s only be
there maybe two and a half hours and it’d be time to go get her and bring her back but I felt that the
contact with other children and just getting her out and doing something was very good for her and I’m
sure that it was. And again I met other parents too there who I had conversations with and that I shared
with and that was very helpful to me.
22:05:05:15 – 22:06:36:06
L. I wonder, Charlotte, who some of those parents were. I think of the ARC, that particular chapter,
having some very strong and wonderful parent advocates. I wonder if you encountered some parents,
men or women, who made a difference in your life or who were inspirational figures for you.
C. Mm-hmm. Well the second person to be Executive Director there was Ruth Wood and as it turned out
Ruth Wood was the mother of a little girl I had seen going to the school bus so I remembered her
daughter. Melody was her name and uh, Ruth was active along with as I previously mentioned Doug
Bickley and there was another family that were prominent in it and that was Richard and Monnie Zobel.
These were some of the persons that were initial in starting that ARC of Chester County and they were
very helpful. All of them had children that were involved.
22:07:36:03 – 22:09:33:04
L. Charlotte you mentioned that one of the interesting things for you in belonging to the ARC was here
was an organization that had goals. Um certainly education as you described was one of the ARC’s goals.
Were there other areas in which the parents were working to make a difference for their children with
disabilities?
C. Well I think they were working even back then, for acceptance and for inclusion which certainly were
two buzz words that came to the forefront years later but even then they were working for those goals
and they were working eventually for a Public Law 94142 uh to include all children in public education so
even though it was just starting, I mean these were the things that were on everyone’s mind. You know,
what are these children, where are they going? What are they going to do? And placing them in an
institution was not what anyone wanted at the time but in many cases it was the only alternative and so
that was unfortunate. And they were fundraising and very busy organizations with meetings and
fundraising and talking to legislatures and trying to get laws passed and because we all learned that
unless it becomes a law it’s moved very slowly. And so everyone was learning and everyone was pushing
and trying to get a foothold in getting ahead and getting some good things passed for these children so
that they wouldn’t be just lost in the shuffle and put in an institution and forgotten.
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22:09:33:20 – 22:11:26:05
L. Charlotte was your husband involved with the ARC as well?
C. Not really. My husband, as I say, we were in the restaurant business and it was, I don’t want to say
24/7, it wasn’t that bad but it was every day. It was certainly every day. We were open seven days a
week and fairly long hours and so my husband was very involved in the restaurant and this is what he
enjoyed doing and he had a tough time accepting the fact that Beverly was mentally challenged. He
adored her and she was his little princess and he realized that I was out there trying to belong to this
and that and make it some advancement and he said look you, whatever you need, whatever you need
to do, wherever you need to go, whatever you need, do it. Do it. You know, and he said it’s fine but he’s
as much as said I can't always be there but you go ahead and be there. So I said good, okay, I’ll take over
and I did. And he was agreeable. I don’t ever remember him not agreeing to whatever. He truly had faith
in what I was trying to do and he always agreed that whatever you say I believe in it so do it. So that was
helpful because it would have been very difficult for him or for me, uh, if he had given me a hard time
about some things because it wasn’t always easy that’s for sure but he was very agreeable.
22:11:26:23 – 22:13:18:05
L. I know that many families discuss the impact of disability on their marriages and relationships.
C. Yes.
L. Was disability… did it make an impact on your family life?
C. I can’t say truly, I guess, of course it made an impact. It’s going to make an impact. I mean I can’t
imagine that it wouldn’t make an impact but my husband and I came from very stable families and we
had no desire to do anything but make a good home for our kids and work towards a nicer living, uh,
experience. Maybe a nice little bit bigger home, um, by that time we had two boys that needed raising
and we felt a responsibility to raise them as normally as we could and they needed time so um we just
tried to make the best of whatever came our way and my husband was very fortunate and I was too that
the business was very successful. And we weren’t wealthy but we certainly could afford to give the
children what they needed and to be comfortable. And we worked very hard. It didn’t come sailing
along and fall in our lap. We put in long hours and my mother was very helpful. Uh, she was a widow, of
course, and she, my children were her first grandchildren so she spent a lot of time in our home and she
helped out a lot with Beverly and uh, she was a great, great influence in all of us.
CHAPTER FOUR: LOOKING FOR SUPPORTS FOR DAUGHTER, PLACEMENT AT ELWYN
22:13:24:07 – 22:19:55:10
L. Charlotte, as your daughter Beverly grew older I’m wondering if you continued to look to
professionals for more advice or for types of support for her?
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C. Yes, yes. Uh she did go to Tom Thumb as I say and she progressed along with that but first grade
wasn’t all a possibility because it, because it just wasn’t. Her level would not let her get into first grade
at that time so uh, meanwhile her little brother was growing up and for a while it was wonderful
because I think she thought he was some kind of a living doll that she played with all the time and he
adored her. And um they played wonderfully together. She was tall, he was little yet and so if he needed
anything opened, she’d open the cupboard and they really worked as a team and gave me quite, quite a
time but it became obvious that he was getting older and going to probably go into pre-school and uh
meanwhile Beverly… I was concerned whether we were doing the right thing or what we were going to
do next. And so friends of, an acquaintance of mine, recommended a psychologist and said why don’t
you go and talk to this gentleman and to tell you the truth I can't remember the man’s name this
moment but I said okay, fine because my husband and I were kind of… she was his baby and he, you
know, and I, meanwhile I’m trying to push her along a little bit, you know and we’d get into some
discussions maybe about method and whether I was maybe being a little strict or something like that
and uh, Bev, Bev, we never ever argued in front of Beverly because it seemed to disturb her if there was
unhappiness or unrest or… and so we, which amuses me now, sort of made a pact that we would never
raise our voice or have a fuss in front of her for any reason whatsoever and I kiddingly say sometimes I
would say to him “I’ll talk to you later!” but we were just not going to upset Beverly and of course the
other children occasionally would get upset about something and it would upset her if they seemed to
be upset and so forth and so on. So we decided that I would go to this psychologist and talk to him and
discuss situations with him and whatever he said we would do because if we were going to spend this
money to go and see this professional then what he had to say was going to be it and we both agreed on
doing it. And so that’s what we did for a while and he said to me, well I said I’m very concerned about
what the future holds. And I said, and he said well you’ve had a good thing going her because your little
guy has been quite an entertainer and kept Beverly occupied and so forth but he said he’s growing and
he’s going to go past her, he’s going to have his own friends, which is what should be. He’s going to go
to kindergarten and she’ll miss him and he said you should maybe think about placing her in a school
where she would get better training and so on and so forth. So this is the first that I had even thought
about a placement for Bev but what he said rang true and so my husband and I talked it over and we
started to look for a placement and there was no helps in those days financially. Uh, so but as I say my
husband, fortunately, had a very good business and I was helping in the business and so we decided
after looking around that we would place Beverly in Elwyn Institute as a boarding student. And I think
she was about eight and a half years old at the time and it um, it just, for her sake is really what we were
thinking of because she needed something. She needed some training of some sort and we just… there
wasn’t anything available so we just didn’t know where to look and Elwyn seemed, at the time, to have a
good reputation. And so we looked into that and that is what we decided to do. So we placed her
privately there and after she was there about three years, we did get some help from the Department of
Public Education for the tuition but um it was something that today would be unheard of. I often think
uh, it just would be unheard of but in those days it was the only thing to do if you could afford to do it
and a lot of people couldn’t afford to do it so we were very fortunate. I always say that was my home at
the seashore and my stock portfolio went to Elwyn for a good many years as it was very expensive when
we first… and it continued to be even with the help from the Department of Public Instruction. It was
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not an easy situation financially but we felt it was the best thing for Bev. Whether or not looking back
today I feel that way, I don’t believe I do but at that time it was the best that we could do.
22:19:55:24 - 22:23:43:14
L. What was that day like, the day that you took her to Elwyn?
C. It was not a happy day. It was not a happy day. No. I think it was… I had to stop and think but I
wouldn’t have to think too long, I don’t think to say it was probably the worst day of my life because it’s
not easy to take your little girl and give her over. And at the time we were supposedly not to be able to
see her for a month. That was their rule however it just so happened that they were having their festival
day or something in two weeks and uh, we were allowed to come down for the festival day and take her
around the grounds for the day and uh, that was, for me, that was a positive. For my husband, no, that
was a rough day; rough day. First of all he was upset about her and then I don’t think he had ever been
in the company of so many disabled people and he was pretty close to a basket case for most of the day.
It was not a good thing but she was at Elwyn for 16 years I think and almost every weekend I went, um,
and uh my younger son, Jim, who had pretty much grown up with Beverly, uh until he got to be well into
school age, he’s go along. And we had some very interesting weekends at Elwyn, our Sundays. They had
a uh, little ice cream shop, I guess, a little, I don’t know what to call it, a little ice cream shop and Elwyn
was a combination of big old buildings and new buildings and in the one older building there was a
group of older ladies and right next to the, excuse me, right next to that was um a uh, the unit where
Beverly was and they had about six young children there. Beverly was eight and a half, nine years old
and I would say these children were all at least that age if not a little younger and some of them were
autistic which was a word that back then I had no idea what that meant but uh these ladies, the older
ladies all mothered those children so sweetly and knew all the children and it was cute. It was a nice
situation and when we would go I found out that if you walk down a couple corridors in the basement
and around the corner, they had two or three pool tables so I used to take the ladies and Beverly and
Jimmy and we’d go down and not really play pool but play pool. And they, they used to look forward to
my coming on Sundays and then Jim and I would take Bev up to the ice cream place and have ice cream
and I think we did that almost every week. Other weekends a lot of time too she was able to come home
to our place for the weekend so that was good. So we did see a lot of her and I kept on top of
everything.
22:23:43:16 - 22:24:51:00
L. Charlotte, I’m wondering you said you and Jim went to see her most Sundays. Did the rest of your
family; your husband and your eldest son go with you?
C. No. No, it was mostly Bev and I. My husband would be working most of the time and my older son
was at his friends and had things he wanted to do and I didn’t really want to interfere in his life. And
later on when Jim got older and he had his things that he wanted to do, I couldn’t expect him to but he
has always been very close to Bev. So I don’t know whether those early days made a difference or what.
He, for one thing, both my sons are extremely different personalities which I’m sure is not uncommon
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but uh, my younger son is much more akin to being more sympathetic to Bev’s situation. My older son
appreciates her situation but it’s a little tougher for him to cope with it.
22:24:51:03 – 22:25:15:12
L. I wonder for Beverly when she would come home on weekends to be with your family, whether it was
difficult for her to go back to Elwyn?
C. She never, no, she never really seemed to mind going back. I think she just accepted the fact that that
was her life and that was it.
22:25:16:13 – 22:28:08:07
L. You had mentioned something that I thought was so interesting. You had said that Elwyn was
available to you because you had the funds, at least initially, to pay for it.
C. Right. Correct.
L. For parents who wouldn’t have the funds for, for a center like Elwyn, what options were available for
them?
C. Very few that I know of. No, I don’t know. I don’t know what we would have done. I thought we were
doing the best thing for Beverly because it was not easy to put her as a boarding student there but in
looking back I reaIize that had I had more support in the community, sure she had been able to go to
school; public school, she never would have been in a boarding institute; never. But at the time it
seemed a wise thing to do because it was one of the only things to do unless you wanted to place a
loved one in a state institution and the state institution had such a bad reputation. My husband was in
the service as I said in the Army and he was in the service with a group of men from the Phoenixville
area and the Royersford area, the Spring City area and he, before, he was either married or you know
even gave it a thought, he had been in contact through that with people that had worked at Pennhurst
and had terrible stories to tell. So that would have been just unheard of, that we would have ever placed
Beverly at Pennhurst so Elwyn seemed like… the fact that we felt so fortunate that financially we were
able to do it and I guess we thought, gosh for this much money they must be doing something right and
it was quite interesting because towards the end when Beverly, as I said was there about 16 years,
towards the end of that 16 years, the philosophy was changing so drastically and Elwyn was changing
drastically because the man who had been the director was leaving and right before he left it was
evident that they were making big changes there. Because Beverly ran afoul of some medications there
that was, it was very unfortunate situation.
22:28:31:26 – 22:38:17:26
L. Charlotte as your advocacy continued with ARC, certainly one of the concerns of the ARC was the
Right to Education which they successfully sued the state for in 1972. Unfortunately not in time to
support your daughter.
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C. Correct.
L. But they did do that.
C. Yes, wonderful.
L. And it was largely recognized, I think, by the ARC that that was the first step to closing state centers,
state institutions.
C. Mm-hmm.
L. As part of your work with ARC did you have opportunity to visit state centers and if so what was that
experience like?
C. Yes, yes I did. We were very concerned. Meaning myself and members of ARC, with the persons who
were in state centers and what kind of treatment they were getting and so forth. And so we had a
committee set up who would do visitations and um, at the time that I was president of ARC uh, my vicepresident, her name was Carol High, she was very interested in the committee and Carol High and I went
a couple of times to Embreeville State Center at midnight and knocked on the door and said that we
were from ARC and wanted to come in and look around and quite frankly I was surprised that they let us
in but I guess by law they couldn’t stop us. I don’t know but they said ok, come in. So we did and uh, we
would go in the wards and uh, they would flick the light on which I felt bad about. We didn’t stay long.
We just kind of wanted to look and the place was run with cockroaches. It was horrible and the paint
was peeling off the walls and the ceiling and there would be paint chips on the floor. It was just not a
nice place. And whenever I talk about the institutions, in one way I feel a little bad because no matter
what the institution was there were always some good people there that meant well and tried to do
their best and felt compassion for the people that were there but they were overwhelmed by the
conditions and just the coldness of these places. I mean it was anything but what you would call home. I
mean cold tile floors and metal furniture and just, I just, it was, just the first time I went to Emeryville I
came home and I could not sleep for about a week. I really couldn’t because I couldn’t get the images
out of my head that I had seen there. And in so many cases the folks that were there were so attracted
to us when we would come in. They would be so thrilled to see somebody because a lot of people in
there had no one. Back in the old, old days people, if they had a person with a disability, would
sometimes places them in an institution and just take off and go to another state and that would be it.
And so uh, I had a relationship with two gentlemen from Pennhurst at one time and they both had been
placed at Pennhurst when they were about seven years old and never, I don’t think, saw their families
again and I don’t really think either one of them were very much disabled but I think after being in
Pennhurst for 52 years, they certainly needed some guidance. So this was common in those days and
again in Pennhurst there were some staff there that were kindly and it was interesting because the ARC
tried to further the idea that these were people. These were adult people and should be treated as adult
people. And many times you’d run into a staff person that would refer to these people as my babies and
my, my little guys or something, you know. And ARC, that would disturb us greatly because it wasn’t
really the right thing but by the same token these people were so compassionate that you couldn’t
dislike them for being that compassionate and wanting to care for these folks who needed care so
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desperately. But I visited Emeryville many times. I remember one time going into the dining room when
their food was being brought in and it was not cooked in the building. It was cooked in another building
and put on plastic trays with covered portions and brought in on big carts and then delivered in this
dining room that had the tile floor and the plastic furniture and they’d plunk down the plastic tray and
take the lids off and there would be some peas and carrots or whatever it was and it certainly wasn’t
appetizing, that’s for sure. And I remember thinking oh gosh, how cold this was. Just know I don’t mean
cold literally, I guess it was reasonably warm, the food but such an atmosphere and so many times with
anyone that is disabled meal time is a big feature of the day because sometimes you’re not doing much
else and oh gosh it’s lunch time and so then to just get something that’s kind of awful, uh, is sad. It’s
depressing but I did and I remember visiting Pennhurst and going in a ward where people were just
wandering around with and some of them just had diapers on and there was urine all on the floors that
someone would come around every so often with a mop and mop up and so forth and just horrendous
really, horrendous. I can't imagine how anyone would not be affected in seeing that kind of thing. So we
would come back and make our reports and the reports would go to Legislatures and here and there
and we, meanwhile the ARC of Chester County joined the state organization and so uh, it grew and grew
and people become more and more aware of this situation and anyone who had any kind of a conscious
seeing some of these things certainly would say oh my word, you know. What can we do? Um and so we
did, we did, we had all kind of fundraisers and, and the state organization climbed on and really went to
town with getting institutions closed. Now there were a certain group of people that were not in favor
of closing the institutions. They were comfortable with the fact that this was a brick and mortar building
and that there were three meals a day and that these people were not out in the cold, or out in the rain,
they had a roof over their heads, and that there were a group of some reasonable people trying to deal
with them and so on and so forth and in that they felt a safety and placing them in the community was a
new thing and they just were so suspicious that this wasn’t going to work and so afraid to have their
loved one turned out. There was a sense of security in this brick and mortar type institution and so there
was in Chester County, I guess it was Chester County, was their base. I’m not sure if it was Chester
County or Montgomery County but there was a group that were very vocal and uh tried to fight hard not
to have Pennhurst closed but fortunately we won.
22:38:18:08 – 22:40:27:14
L. Do you remember the name of that group, Charlotte?
I think it was called VOC [VOR] or someone like that. There was a lady that was pretty much the vocal
part of it and uh and she was, she was quite vocal and quite uh, I’m going to say quite strong in her
opposition and uh but when reality set in there was no question. There was just no question that what
ARC was doing was the right thing. And there was a group from Pittsburgh; Marsha Blanco was the
director of ARC up there, the Allegany County ARC. And Marsha was a fire brand too and she really did a
lot of good work up there and all over the state because by that time I had left, not left Chester County
ARC but I was no longer president and I moved onto the state organization and eventually became
president of the state ARC and it was, I thought it was wonderful. We had so many people that were so,
so adamant in their want to correct things and make things better for these folks that were disabled. So
it was great to be with them. It was great to hear their experiences. It was great to share and take these
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things back to our local chapters and they really, they really did the job. It took a while, I think it was like
11 years before they finally closed Pennhurst but it closed and it was good that it did.
CHAPTER FIVE: COMMUNITY LIVING, SUCCESSES AND CHALLENGES
22:40:28:00 – 22:44:15:24
L. Charlotte you mentioned that some of your fellow ARC members, fellow parents, had concerns and
fears about community and as you say community was so new. There were so many unknowns.
C. Yes.
L. Um did you understand or even share some of their concerns early on about community and whether
people could be successful in community?
C. Well fortunately I was able to visit in the community some of the people that were being released
because they gradually started to release people from Pennhurst and of course when they first started
to release them, they released the higher functioning people who could do, who they knew could do
well in the community. So I had the opportunity to visit with a lot of these people and it was wonderful.
It was wonderful because these people were high enough functioning that they could really without too
much additional training and so on and so forth, with just some minimal support, could really do well in
the community and they were thrilled. They had their bedroom and they could put up their baseball
posters and have their little radio by the bed and over things that you and I do and think nothing of it.
They were able to do and they were just, they were thrilled. They were thrilled. Now one of the things
was that they were older. A lot of these people, like I say, the two men that I was connected with were
up in there, oh, they were late sixties when I knew them and they were both in their seventies when
they passed away so they had been institutionalized for a long time and they just thrived in the
community. They just had a ball. They loved it and their case manager visited, of course, every month.
So I would often go with the case manager and I have to tell my little story. These men were like I say in
their late sixties and when the case manager would go and I would go, I would bring cheese and crackers
and some soda and so forth and they were in a, they were in an apartment. I think it was three
gentleman were there and so this one day we visited and we talked about current events and what they
were doing and if they went to the baseball game and whatever. And so this one day when we were
packing up and getting ready to say goodbye and leave, we’d stay an hour or so, this one gentleman
came over, one of my men that I was (?) for them and he said you know I like wine. So I said alright
that’s okay so I said to the case manager afterwards would they be, you know, would it be okay? And
she said well they’re 69 years old if they can't have a glass of wine now and if that’s what they want. And
I said okay alright next time we go I’ll bring a bottle of wine so the next time we went we each had a nice
little glass of wine and they enjoyed it very much with their cheese and crackers. They were just, they
were so cute. One time I took them to K-Mart to buy new jeans and uh, it was fun. I had to get the key
to the dressing room and of course there I am with these two old gentlemen going in and buying their
jeans. They were thrilled. They had never done anything like that before so it was wonderful; it was
really wonderful.
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22:44:16:26 – 22:50:02:11
L. Charlotte, I wonder seeing people, these two gentlemen, others, succeed in the community. Did it
start to change the way you were thinking of Beverly’s future and what she might do?
C. Yes, yes. It did. It did. Now Beverly is a lot lower functioning and would need a lot more care but yes it
did and Beverly was reached in age. She reached the age of 21 and at 21 assistance stops and
opportunities stop in that day in age that was it. So the Department of Public Instruction was done as far
as financial aid and Beverly was transferred to Woodhaven which was an institution up off of North
Broad street, not far from Bayberry actually and it was I understood, set up to accommodate people
with behavior problems that were coming out of Pennhurst and trying to behave, shape one behavior
for them to better adjust to the community. Now behavior shaping was a whole new ballgame because
there was no such thing as behavior shaping years and years ago. Behavior shaping was done by, the
client would get a psychologist and the psychologist would study them and write up a program; a
behavior state program and this program was then to be followed by staff or anyone that was dealing
with the client and so Woodhaven was to be a behavior shaping program and so Beverly was transferred
up to Woodhaven. Beverly had had some unusual behavior because of some anti-psychotic medicine
that she was given at Elwyn. She was given the medication without my consent. I had no idea what antipsychotic medication was. I never run into it before and so after this whole episode was over, of course,
I made it my business to find out what it was and became quite an advocate for being very careful when
it’s used. So through that she was referred up to Woodhaven at the age of 21 so she was at Woodhaven
for two years and then she was offered a place in the community and it was very different because
when Pennhurst was first dispersed. There was mass… there was a lawsuit of course. It was a class
action and she became a part of class because we had, through advice, put her name on the waiting list
for Pennhurst simply because it might provide an avenue for her to get some services so this did happen
and because her name was on the waiting list she became a part the Penhurst class. So there was a
client from Penhurst who was dispersed and put into the group home. She was mentally retarded and
blind and very self-abusive; a very unfortunate case. Her parents did not really want her to be let, put
out of Penhurst. They were very much into the safety and the bricks and mortar thoughts. However they
did let her go into the group home so they were very, very skeptical about whoever was going to go into
the group home with this gal so they were looking for clients that were rather quiet and did not have
behavior problems and Beverly’s name came up along with another girl and so I was told, I was called
one morning by my case manager. She said she wanted to come and talk to me about Bev and I said fine
and she did. And she said how would you like to have your daughter in a group home in Paoli? And I said
oh how fast can that happen? And I think Beverly made the fastest exit out of an intuition and into a
group home. I thought it sounded wonderful and it would only be 15 minutes from my home so I was
thrilled to death. And so that was accomplished and well we had to go, my husband and I, maybe
Beverly I can't quite remember but we had to go and meet inspection. The parents of this girl had to
meet with us and question us and inspect us and make sure that this was going to be a suitable thing,
approved by them so forth and so on. Very different from today I might tell you and so we passed
mustard and so Beverly went into the group home.
22:50:09:10 – 22:58:38:01
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L. I’m wondering what the experience of them moving to community was like for Beverly. It was
probably the first experience in community since she was a young child.
C. Well she did very well. She really, you know, I’m so proud of her because she has always adjusted so
well to whatever she’s faced with which is, to me, been wonderful. It really has and when she first went
into the group home everything was new. The group home was new. The staff was new. No one knew
really what they were doing to tell you the truth. They all were doing trying to do what they were
supposed to do and um it was a difficult time actually. And Bev, the house that they moved into was a
little split level and it had a great big picture window in the living room; glass and at night when it got
dark outside and the lights were on inside, uh, Bev could see her reflection in the glass in the front
window and the same when she rode in an automobile because she wasn’t really used to driving around
in a car. So if she was transported here and there in the car she would see the reflection of things as
they go by when you’re in a car sometimes you’ll see reflections in the car window. Well some of the
inexperienced staff said oh she must be hallucinating so they recommended that she be put on an antipsychotic medication and when I heard that I just about flipped so I said, the case manager called me
and told me they were going to put her on this medication. I said no, no, no, I don’t want her on that
medication. I want you to and she said well, and she’s as much as said well it’s an order and that’s the
way it’s going to be. I said oh no it’s not going to be. I said I want to call Mr. McKinstry who was the
administrator, an HMR administrator at the time in Chester County and I said uh, I’ll discuss it with him.
So okay I called him and he knew who I was at the time because I had interactions with him one time or
another and I said I don’t want her on this medication. It’s not the right thing and I, you know, I want
more of a looksee at this and see what the problem is. I said I want your word that she will not be placed
on that medication until I have time to investigate it and he said okay. Well in the meantime they
already put her on the medication and so however they found out what was going to happen happened.
What I told them. She was really had an allergic reaction to it in that Beverly, any kind of medication that
is supposed to calm you down, she has like a reverse reaction and this is what happened and of course
the minute they noticed what was going on they took her off of it but when I went on Friday to pick her
up for the weekend I could tell that she had been on something but they said no she wasn’t on anything
at this moment. Well she wasn’t at this moment but she had been I guess a day or so before. So I just
was furious and I had become acquainted with someone at Woodhaven and I was there, who was a
former pharmacologist. His name was Alan Guywitz, I don’t know where he is today, but he was
studying at the time for his psychology degree and I was thinking wow, a psychologist that’s a former
pharmacologist, what a gem he is. So I called him and I told him the situation and he said to put your
daughter on an anti-psychotic medication is not only unethical it’s illegal and he said do you have a
lawyer? I said well I have a lawyer but he doesn’t know anything about anti-psychotic medication and he
said well I have one that does so he said I‘ll give you his name and you call him right away and he’ll
straighten the matter out. I said “good” so he gave me his name. His name was Tom Coval. I can’t… I’m
trying to of his first name but anyway it was Coeval and he was from Willow Grove and so I made an
immediate appointment, went up there, talked to him, and he said the same thing. He said they can't do
that, that’s not right. He said, uh I said well I have an appointment with Mr. McKinstry to talk about it
and he said no, no cancel the appointment. I’ll make the appointment. I’m going to make an
appointment and I’ll have the whole team in there and we’ll discuss it. So I said ok so this is what he did
15
and he told me when it was and so forth. So I went to the appointment with Coval and everybody was
there. Mr. McKinstry was there, his assistant was there, the owner of the group home was there, the
staff was there, the case manager was there, and myself and my lawyer. The lawyer said before we start
this meeting, I want to make a statement. I want every one of you to know that what you did by giving
an anti-psychotic medication to Beverly without the consent of her mother or her team, her guardian
and her team, he said was not only unethical, it was illegal. Now Mrs. Twadell has the right at this point
to take every one of you to court and with that in mind we’ll start this meeting. Well there were some
wide eyes and dropped mouths and I was saying yay, right on! So we got that straightened out in a big
hurry and so Beverly was not on any anti-psychotic medication and I said to Mr. Coval once we left the
room, what can I do to prevent her ever being put on this without my agreement. He said it may cost
you a couple of dollars but you should be become her legal guardian. It’s a court process in that she
must be adjudicated incompetent and you will be placed, her parents will be her legal guardians. I said
well then make arrangements because that’s what I want done. So I think back in that day and age it
was about a thousand dollars for the court hearing and so forth. And Beverly fortunately did not have to
appear in court but my husband and I had to appear and testify and we were made her legal guardians.
Now we can't pass that on. The courts will, which I have done, named in my will my son as her legal
guardian and the courts will be very cognizant of that fact and pay attention to it but for him to be a
completely legal guardian, it’s court process and he would have to do that so I’m hoping that he won’t
have to do that. I’m hoping that his position as my naming him legal guardian will suffice but he knows
that if it doesn’t that he would probably then go and have the court process over again.
22:58:38:08 – 23:00:25:02
L. Charlotte, I think many people would assume that parents always had guardianship or authority over
the direction…
C. They do. They assume that but it’s not true. Not really when you get right down to brass tacks as the
lawyer said the court will pay strict attention to that and uphold that to the best of their ability but to be
an actual legal guardian of someone that person has to be adjudicated incompetent and you named as
their… and I’ll tell you where people run into it all the time is in nursing homes. That an awful lot of
times, uh, person can be whether, whether true or not true or whether necessary or not necessary they
can be adjudicated incompetent and someone else made their legal guardian. So that can happen but in
the case of Beverly it was necessary and it, I can't, I can't fault it because there had been many times
when I said this is the way I want it to be and I’m her legal guardian and they don’t know what I’m
talking about. They say oh you’re her guardian? I say I’m her legal guardian. It’s a legal guardian and I…
there’ve been a couple of other people that have gone the process. And I’m not saying its right/wrong.
It’s an individual thing. If it’s necessary, it’s necessary but Beverly can, she doesn’t take a breath unless I
say it’s okay and that’s the way I wanted it.
23:00:26:02 – 23:05:52:22
L. Certainly, there’s so much philosophically today around choice and self-determination…
16
C. Well choice and self-determination is a wonderful, wonderful, wonderful thing but when a person
can’t speak how do you know? And they can’t write and they can’t communicate with you. Who’s to say
what the choice is? And I have been through this a dozen times with Beverly because she does not
speak. She can communicate to a point but she won’t answer your question. Do you like ice cream? She
might say guess, you know. Do you like chocolate or vanilla? I don’t know. You know. It’s impossible to
get a choice out of her let alone ask her where she wants to live or you know. Now I know because I’ve
dealt with her for so many years, what she likes and what she doesn’t like. And I’m so close to her that I
can read her face. Uh, when I say something to her that she likes she’s got that little smile and uh, that
kind of thing. I know when she’s not happy. She gets very, very silent, very quiet and so in her case, but
you know what do you do in a case like that? If somebody doesn’t have full authority, I just never, never
wanted them to be able to give her another drop of anti-psychotic medication unless I thought it was
absolutely necessary. I’m not saying it never could happen but I would have to know that it was
extremely necessary because she’s got some problems today that came from anti-psychotic. She has
some hand tremors that came from anti-psychotic medication that she was given at Elwyn and uh not
totally unnecessary but I didn’t know what it was and I thought it was necessary at the time. These are
the authorities. These are the people I’m paying thousands of dollars a month to deal with my daughter
and they’re telling me she needs this medication and I’m thinking I guess, you know but that was back
when I was a lot younger and a lot stupider to put it plainly, yeah. And it won’t happen again, ever while
I have any breathe left in me that’s for sure. No. I mean her good is my goal and whatever is good for
her is what I’m going to deal with regardless whether I like it or not. I’m, many times have not pleased
myself but if it’s for her good, that’s the main thing. Not me, her and she’s done very well in the group
home but unfortunately today finances are such that politicians have cut the costs. They don’t pay staff
people what they should pay them. It’s exactly the same as if you have a loved one in a nursing home.
It’s the same thing. These folks, hands on people, are not paid enough and if you do not go and check on
them and if they do not have an advocate, I don’t care where it is. I’ve had some serious surgery. I was in
a nursing home following my heart operation and in the idle of the night one night a nurse came in and
said we’re going to take some blood out of your arm. I said oh, okay, what are you doing that for? Well
we want to check your Cumiden levels and I said oh I’m not on Cumiden and she said oh. So she goes
pout of the room. After a while she came back and she said no, you’re right, you’re not on Cumiden.
Thank you for being alert. I said you’re quite welcome. Now if I hadn’t said they she would be checking
my blood for Cumiden and saying oh her level is very low. I think she needs a good shot of Cumiden or
something, you know. I mean really and if you can’t speak up for yourself, either you’re old and can’t do
it or you’re disabled and can’t do it, you better have an advocate. That’s all I can say and I’m trying to be
an advocate for my daughter at all times and trying to teach my son how to be an advocate and so far so
good but I don’t know. I’m hoping for the best.
CHAPTER SIX: CHARLOTTE’S CURRENT ADVOCACY EFFORTS AND THOUGHTS ON THE CURRENT
SYSTEM
23:05:59:06 – 23:13:06:13
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L. So Charlotte you’ve been talking about the need to be really vigilant in your advocacy for your
daughter. Um I’m wondering if you can tell me a little bit about um Beverly’s living situation now; if it’s
something that you’re satisfied yet, if you continue to give her the oversight that you described earlier?
C. Well first of all many years ago when they were talking about community involvement and closing
state centers, I was a firm believer along with a lot of other folk, that these people can exist very well in
the community and I think over the years that’s been proven. But the ones that will make the quickest
adjustment are the folks that needless to say are higher functioning and can cope with everyday living so
on and so forth and with maybe a lot more minimal supervision. There are still lots of problems
involved; marriage is one, having children is another. Uh, there was recently an article in the paper and
in fact I’ve enclosed it in some things that I gave you earlier uh written by a teacher who has
encountered children in her class that were very intelligent but there parents were mentally retarded
and it’s become an issue for them and sometimes a difficult issue in dealing with their lives. And so not
too long ago I was called by someone who my nephew said oh, call my aunt Charlotte. She knows all
about that subject. But he had folks in his church, a mentally retarded couple that wanted to be married.
Her people thought it was okay, his people did not and it was some controversy and uh I referred him to
the Lancaster County ARC because I knew they had some advocacy up there so it will go on, it will go on.
But I do feel that these people have a right to be in the community with the proper supports and
thereby things entailed because it cost money and at this point the staff, the hands on staff, that are
working in most group homes are probably similar to hands on staff that are in nursing homes. They’re
either people that are very compassionate and interested in this type of work and want to make it a
career thing or they’re people that are picking up a job between jobs. They’re going to school. I’ve seen
staff in my daughter’s group home, uh, sitting down with their schoolwork all spread out in front of
them and really concentrating on the school work and not what they’re actually supposed to be doing.
And so it’s not an easy thing and unless you can afford to pay people a proper wage and then demand
that they stick to their job description, it’s tough. It’s very tough and my daughter’s group home is no
different from anybody else’s group home. They all have a problem and management is a key factor and
I am not that knowledgeable about the various vendors in my county and how there management is
structured, but I’m about to learn more because I’m not very happy with things in my daughter’s group
home. Now things… I mean she’s been in a group home for almost 35 years and I’m very thankful I do
want to stress that. I’m extremely thankful that she is in a group home. Not just because of my situation
but because of hers. She deserves a life. It would be very… I know so many parents that have kept their
disabled person at home and yes, they’ve had the self-satisfaction of knowing when they get in bed at
night that Jim or Suzie is over in the next room in their bed and all is fine with the world. But it’s not
exactly the kind of a life that any of us really want. I mean both of my sons have their own lives and do
what they… they’re living. They are living their life and their experiences are their experiences and I feel
that Beverly has a right to a life too. She enjoys the other clients in her group home. Two of the girls
she’s been with for at least 20 years so she knows them very well. She’s in a wonderful day program that
I can't say enough about, that’s staffed with people that just care and it’s obvious that they care. So I’m
all for the community system. I think it’s wonderful and I think these folks deserve that but they deserve
to have it done right and it’s not going to be done right if it’s not funded and for my experience,
politicians are great for passing rules and amendments and so on and so forth and laws, whatever. But
18
they’re not that great about funding them. It’s awfully easy to pass the law but when it comes to coming
up with the money to fund it, that’s another stories. I think they’re scratching their heads now with
some of the things that have been passed like who is going to pay. And all the talk sometimes about
social security and whether that’s going to be relevant 50 years from now and so forth and so on but
um, the community system is a good system. If it’s run right I thoroughly believe in it and I continue to
advocate for it.
23:13:06:28 – 23:17:41:11
L. Charlotte, what do you think happens for Beverly if there comes a time if you’re not able to give the
level of oversight and supervision that you do give her today?
C. I am very worried, very worried. Not just for Beverly but for anyone in her situation because if there is
no advocacy, uh, it’s pretty difficult. There’s an awful lot that falls through the cracks and I could sit here
now and go on for a long while about personal experiences of things falling through the cracks either
with Bev or with other clients that she’s close to. And to me it’s scary. It’s really scary. I just don’t know
what people are thinking of or were thinking of when they decided on the community system. Were
they thinking that people don’t get old? I mean Pennhurst; the people that have come out of Pennhurst
are old people now. They are no young people around that are on the ex Pennhurst list, that’s for sure
and as people age they need services, maybe some eye appointments and so… I just heard the other day
that it’s possible Beverly has some cataracts and we really haven’t delved into it a lot at this point but I
was talking to someone recently who said that they’ve had some experience with these folks having
cataracts operations and that they’ve been pretty successful. And of course those operations today are
so much easier than what they were many, many years ago. So that’s something, that bridge I may have
to cross eventually but I’m working at the moment with trying to get, uh, not trying to get Legislation
passed. I guess there’s enough of it passed. It’s just get it implemented would be more of the thing and
it’s interesting because at my age I, oh, I guess several years ago when I retired from work I worked until
I was 75 and I finally decided I would quit. Uh, partially to take care of my grandchildren when I don’t
know why I didn’t think that was going to be work but it was very pleasant but anyway I thought you
know I spent so many years in so many organizations and committees and this and that and the other
thing and I thought you know, I think I’ll just take a break because I’ll, let’s just see if things are going,
you know, come along and so forth. Well, I have now decided that I just better get back in the works
again because they need someone out there that’s gonna’ really tell it like it is because there’s a lot to
be improved in the community system. And I think that, I think that the knowledge is out there. The
knowledge is there but these people have to understand that they have got to provide the funding and
until legislatures become aware and they are more aware because they, many legislatures have perhaps
a person in their own family that they have had to deal with or have heard about someone else dealing
with and some of them are aware but there a lot of them that are not aware and they really need to be
aware that without the funding this is not, it’s not going to be what it should be. That’s all. So I’m going
to keep at it. I keep on keeping on.
23:17:42:09 – 23:22:55:01
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L. And you do keep at it I think currently you’re on the um the Westchester County, let me get the
acronym right… MHIDD: Mental Health and Intellectual and Developmental Disabilities.
C. Correct.
L. Board.
C. I’m not on their board at the moment but I am on their quality management committee.
L. I wondered if you could tell me about that work and what you are hoping to accomplish on behalf of
people with that diagnosis.
C. Yes, um, the committee deals with the quality of services that clients who are receiving services in
Chester County are receiving and the quality of those services and whether the services are doing what
they're supposed to be doing. We don’t just deal with the intellectually disabled. We deal with the
mental health community and uh we look into suicide rates and uh and as I say the mental health
community has made extremely good strides in the past few years and become very, very vocal and very
instrumental in getting services for the mentally ill and it’s been a really wonderful thing. Uh, also the
early intervention for mentally challenged folks, for the children, the intervention services have really
exploded and that’s a very, very keen interest in many, many areas including ARC of Chester County. I
believe they run, they do, a first step program which has been in existence for quite a while but there’s a
group that concern me and that is the aged, uh, as I say, people that were released from Penhurst years
ago are not young anymore. And there are lots of people in the community that their parents have kept
them at home for many years and now can no longer take care of them and so this is a large, this,
because people are living longer, uh, this is a large group of people that need advocacy and some of
these people are not immune from uh Alzheimer’s and that can happen to people that are mentally
challenged so um this is a concern. And I think should be a concern to ARC and to other folks that are
involved in advocacy; that there is a wide spectrum out there of people that are aging and uh and need
funding, needs funding. You know it’s interesting because in raising funds when you deal with sweet
dear little early intervention people, little kids are so dear and so cute and tear at the heart strings but if
you show people a room full of old people with some dementia and beards and grey hair, they’re not
nearly as adorable as these little cute kids. And it’s tough sometimes raising funds for this part of the
population but they need help too and need services. So I’m at the present time, very interested in the
aging population and I try to throw in my two cents at the meetings and uh without getting personal
it’s… but looking at the larger picture and Chester County truly does have a wonderful bunch of people I
have to say. It’s my own personal, uh, comments but they’ve been marvelous, uh, in my experience.
Dedicated, I mean I know people in Chester County in the MHIDD service that started out as support
care, you know people, case managers who have risen through the ranks and who know what people
are talking about because they’ve been there. And I know it disturbs them when there are funding cuts
and so forth and so on. So I’m hoping that somehow the word can be gotten out that these people still
need services.
23:22:55:29 – 23:27:07:07
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L. Charlotte, you talk about wanting to, having wanted to take a break from some advocacy work but
feeling like you couldn’t and you are still in the game definitely first string but I wonder if you feel
confident that there is an up and coming generation of professionals and parents who will pick up the
gauntlet when you really do eventually decide to retire?
C. Well, all I can do is hope; all I can do is hope. Time changes, people change. I remember when I was
very young and found that Beverly was mentally challenged. I remember thinking wow, you know,
people are now studying this and there’s more services and there’s more agencies that are paying
attention to this and just think probably in 25 years there just maybe there won’t be any more mentally
retarded people. Wow, you know. I think I was a little bit wrong. I’m sure and I don’t know the statistics
but I know I attended my first grand child’s birth, not that I intended to, but I sort of … circumstances
put me there and I was amazed, just amazed. My daughter in law was in labor and I stopped at the
hospital to see how my son was doing and he said come on in mom, its ok come in. I said really? So I
went in and I kind of sat in the corner and uh my daughter in law was doing very well. She was eating
lollipops and crushed ice and watching Oprah and after a while a nurse would come in every so often,
check her, check the monitor, the baby had a monitor on the baby’s heart, check that, check everything.
Everything is fine and then they came in and said we’re going to speed this up a little bit, gave her a shot
of something, and sure enough things speeded up and the next thing you know [someone] brushed in
who turned out to be the doctor. I thought it was a high school girl. Sat down and she had an entourage
with her and the next thing you know Michael was born and I was absolutely like oh! I could not believe
it was just wonderful. And the technician, the technical part of it, when I thought of when I had my
children, there was nothing. I mean nothing but the nurse and the doctor. No monitors, no… I mean
forget it. It just, it was unbelievable so I really did think that probably today there are less people being
born. The only thing that makes me think that that’s not true is the drug factor. When so many people
into drugs these days and abusing drugs, that I don’t know about the children that are born already drug
addicted and that’s a horrible thing. That’s another whole ballgame that I haven’t been involved in but
it’s sad. But I think really under normal circumstances, with all the technical things they have, truly I
think it’s marvelous and I don’t think other than what I just mentioned, I don’t think there probably are
as many people with intellectual disabilities that are born today with them. They seem to know when
the baby is in distress and they’ll call for a C-section right away if they really think there is distress there
and so on and so forth. So it’s, we have a wonderful world out there.
23:27:09:00 – 23:34:25:16
In your view, what are some of the biggest challenges that the system itself is facing today; the system
that supports people with intellectual disabilities?
C. Well I think hiring is one thing as I say. I am more familiar with group homes than any other facet of
the system and I just don’t feel that they’re able to hire quality people. They try but it’s very difficult.
Now Beverly has a wonderful doctor, a GP. He’s wonderful. I mean if the group home calls up and says
she’s having a problem, many times he’ll fit her in just to take a quick look see. She goes to a podiatrist
which is wonderful. She can go to the eye doctor. Um, she just had a sinus infection recently and the
doctor gave her an anti-biotic, turned out she was allergic to it and broke out in hives. So had to be seen
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by one of these little um clinic, medic clinic that have been opening up all around and uh, and they
serviced her very well. They decided right away it was an allergic reaction to the anti-biotic and gave her
a very small dose of Prednizone and some Benadryl for her hands that had lots of hives. And uh, that
was great. I think the community has risen to the point where they’ve just been very accepting of folks.
Uh the one girl in Beverly’s group home goes to bingo every Friday night and just loves it and they adore
her. And so to me it’s the funding, it all boils down to the funding and not being able to attract people
that need a living wage and it’s not easy. It’s not sitting down at a desk and doing some writing or filing.
You’re dealing with human beings. That’s not only the most pleasant thing in the world. And it’s tough
but I think it’s the same in nursing homes. I have a friend, a neighbor, who’s in her eighties and
fortunately she does very well but unfortunately slipped and broke her leg. And she’s in, now, she was in
skill nursing but now she’s got to be in the uh the uh assisted living for the next couple weeks but uh it’s
costly her 5,000 a month to be there. Now fortunately she’s got the funds to be able to do this and it’s a
very, very nice place but not everyone can afford something like that and it takes advocacy. It really
does. It really takes advocacy. And that helps even with the need for funding, the advocacy helps. If you
have someone to go in, uh, and I have a very, I hope I do. I have a very good rapport with the vendors,
the agency where my daughter is. The woman who directs the agency started out as a case manager and
a support person in a group home and has risen through the ranks and is now director of the division of
the company that provides Beverly’s group home and I have a very close relationship with her and I can
understand her problems. And she knows that I can understand but I can’t overlook the fact that my
daughter’s group home is not being managed correctly at the present time. And I don’t try to avoid the
situation. She knows how I feel and I’ve written letter after letter and they’re being addressed but Rome
wasn’t built in a day and I do feel that they’re trying to relieve the situation and try to correct the
situation. This is what you have to do. You can’t just go off. You’ve just got to work with these people
and make it plain to them what the problem is and the fact that you expect to have an answer. And then
one problem gets cured and everything goes very well for a while and suddenly there’s another
problem. And when a staff person joins the group home, comes into the group home and they’re really
good; you think oh wow, how long is this going to last? You just pray that it lasts as long as it possibly
can but you know darn right well that if they get a better offer somewhere else, they’re gone and then
its start again. And that’s unfortunate and that’s the big problem because it’s not the clients. The clients
really, I mean, Beverly and her three housemates are under normal circumstances pretty happy but uh
you just have to stay on top of it. And if no one’s willing to do that, it’s the same way of you had your
mother or your aunt in a nursing home, you can’t just put them in there and go out once in a blue moon.
It’s got to be an advocacy thing and on top of that you’ve got to make it plain to uh your politicians that
there are people here that need to be considered and they can’t be expected to make miracles, the
directors of these places, and get blood out of a stone. It just doesn’t happen. So I think it’s going to be
an eternal problem and we’re never going to be done so to all of you advocates out there, don’t get
tired. Keep on keeping on because that’s the way it’s going to be. Get revved up again. Take a little
vacation and get revved up because we need you, everyone. That’s for sure.
CHAPTER SEVEN: REFLECTIONS ON WORK, INSPIRATIONS
23:34:30:17 – 23:45:31:19
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L. So we’ve talked a lot about Beverly in terms of her needs and her education, her living situation. Um,
but I wonder what is Beverly like today and what is your relationship like with your daughter?
C. Well, uh, it concerns me a little because we have become very, very close. As some of my duties with
my other children have kind of evaporated they’re older now. They’re well able to handle their own
affairs and this is what I want them to do. I have no desire to run anybody’s life that’s for sure. I have
enough to do with Beverly but um since November, this is what almost July, but since November, uh,
there’s been a lack of management in her group home. And I’ve been very concerned about it and I have
been, I go to church on Sunday morning and then uh, after the coffee hour, after I catch up with all my
buddies, then I leave and go up to Beverly’s house, pick her up, and bring her home for the rest of the
afternoon and for dinner and then she stays overnight with me and then I take her to her day program
in the morning and that’s it. And then I have habitually always gone to her dentist appointments and her
gynecological appointments because I think at those times people need a little extra support and I have
kiddingly told them at the group home, two of my goals are to keep teeth in her mouth and keep her
out of a wheelchair. Uh, I guess time goes so fast it’s probably about two years ago she had a bad fall at
her day program. It was in the parking lot. She, there was no staff walking with her and she tripped over
one of those cement things that they put in front of cars and oh, went down flat, boom! And was in a
wheelchair for a couple days until we decided that, well she had her, she was x-rayed. Nothing was
broken but until it wasn’t quite as sore and she could put weight on it and it is a problem when she’s in a
wheelchair because Beverly is 5’10. She doesn’t look like me really. She looks like her dad’s family and
her dad. She’s 5’10, tall and very slim but she’s a big gal and uh, so uh, ever since November uh, there’s
another client, a client that was placed in Beverly’s group home that’s really an inappropriate
placement. She should be with some, a grouping that is more to her needs; I’ll put it that way. First of all
Beverly is 57 and her two mates are I’m pretty sure they’re both in their probably early fifties. I think
Beverly is probably the oldest one now but this gal is 24, full of energy and I don’t know where in the
autism spectrum is but I’ve heard the diagnosis and she just… Beverly and her other two clients are very
peaceful, quiet. This little gal is very disruptive and at this point the vendor, the agency has hired a one
on one during the day, not at night but one on one during the day. And for a while her behavior was
really affecting Beverly. I didn’t know what the problem was. We really didn’t know what the problem
was but it was definitely causing Bev some angst. After they found out what the difficulty was and
because I was vocal and wrote a letter that things better improve or I was going to have to take some
action, uh, they decided, well they had a meeting, we had a meeting and I was told that they were going
to hire, that they would like to find another placement but at the moment they didn’t have a placement
in their set-up and they were going to have to talk to the county as to whether they could come up with
an alternative situation and I think that everyone is kind of on the same page; that unfortunately it’s just
not a good placement for this person. And as I say I feel very bad because you don’t want these things to
happen but by the same token you can't have one client disrupting the lives of three people when there
might be a better situation; not only for them but the other three people. So there’s another meeting
set up in the next few weeks and they have now, as I say, announced oh I guess it’s been three weeks
since they hired the one on one with this gal and Beverly said uh, behavior has improved tremendously,
tremendously. She’s been wonderful. Uh, so it’s helped me tremendously. I still feel, because there’s
two issues; the one issue is the presence of this person that really needs to be, have more, have her
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needs better met. That’s one issue. The other issue is the fact the staffing at the house has been… there
was a person there that was the manager and she left in November and ever since then the whole
situation just deteriorated and so that hasn’t been straightened out yet although they tell me they’re
working on it so I’m hoping that that’s what it is and there’s a meeting coming up in the next couple
weeks and so we will review the situation but Beverly, until the situation is completely corrected I’ve
been feeling that for her sake, I like to bring her home and let her have a little change of atmosphere for
a change and um cook her a home cooked meal. Mother likes to make a home cooked meal and uh
because it shouldn’t be that they should be able to take the clients out for a meal out or a ride to the
park or an outing of some sort which is in her HP. Well they can't do it with this one client that’s there
because they can't count on her behavior. So nobody gets to go anywhere. So Bev just, you know, of
course she has her day program all week which is fine and Saturday is my day. I have to have one day a
week that I call my day and that’s Saturday. And Sunday as I say, go to church, go up get Bev, bring her
home, and we sometimes will take a ride, sometimes we’ll go to target. Um sometimes we’ll do other
things. Uh go see my son that likes to be out in the boondocks. We’ll take a ride out and see him. We’ll
do some things and uh then the next morning her back to her day program and that’s been working fine
but I have not really had a Sunday off for a long, long, long time but that’s okay until I mean she’s
enjoying being at home and I’m very, as I say, I’m very close to Bev and she will communicate. She says
words. It’s the strangest thing with Bev and speaking. She will say yes and she’ll say no sometimes and
she’ll say, she’s put two words together: me go, you go, go home, eat. She’ll say and it’s always
appropriate. She doesn’t… I’ve been with other folk that have babbled or you know, not Bev. She
doesn’t say anything but when she says it it’s very appropriate. One time and I’ll never forget it. It’s been
some years back but she was home and I was putting her to bed and she got in bed and I was tucking
her in and I sat on the side of the bed and I was talking to her about, I don’t know what we were talking
about or what I was talking about but anyway after a while she looked at me and she said get out of
here Mommie. She called me Mommie. Yeah I about fell over. In other words, okay mom enough, you
know which was so appropriate and to put that many words together, she never done it again. It just
makes me wonder, you know, what’s in her head and I’ll say to her sometimes, Beverly what are you
thinking? Tell mommy what you’re thinking. What are you thinking up there in that little head and she’ll
just look at me and kind of smile, giggle, but no. it’s a mystery. It’s really a mystery.
23:45:31:27 – 23:46:14:04
L. What does she mean to you?
C. Oh my gosh. I don’t want to cry. Don’t make me cry. I’m afraid I might. I can't really get into that too
heavily. A lot. Yeah, a lot.
L. Do you need a minute?
C. Hmm?
L. Do you need a minute?
C. A deep breath, yes, okay.
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L. Sure.
C. Yes. She means everything to me.
23:46:17:27 – 23:47:58:26
L. So, many people, I think, in Chester County, around the state consider you a leader in this field. I
wonder if you consider yourself a leader.
C. I guess to a degree I do. I guess to a degree I do. I’ve had a lot of motivation, that’s for sure and I’ve
met so many wonderful people, that’s for sure that uh, it’s difficult. It’s difficult sometimes to uh, as we
go through life there are, you know, things that are difficult and uh, I just keep thinking that someday I
guess maybe, we’re meant to know all the secrets. After one time when I heard Betty White, the one
you see on television, and someone asked her about what she thought about death and dying and she
said well you know it’s funny, she said my mother always used to say when someone passed away or we
had an aunt named Betsy or whoever she was, she would say “Well Aunt Betsy passed away, I guess she
knows the secrets.” And I thought what a neat thing to say. I think that’s very true. I guess someday we’ll
all know the secrets.
23:47:59:24 – 23:53:50:10
L. What do you think has been one of your greatest challenges in life, either personally or in your role as
an advocate?
C. I think when I had my triple bypass because I had always been very healthy and I have always been so
grateful and so thankful for my health. I don’t like being sick; never have. That is not on my schedule. I
always say that’s not in my book. I don’t want to be sick. I have very rarely been sick and as I say I’m
eternally grateful but when that surgeon told me that I had three arteries that were pretty well blocked
and that a stint wasn’t going to do it, I needed open heart surgery, I think that was the biggest jolt that I
have ever had in my life. I just was… I couldn’t believe it and never having had surgery, I got to the
hospital and it was really funny because the nurse is doing the write up or whatever they do and she
said you don’t wear glasses? And I said no. She said and you have all your teeth? And I said yes. She
said… I said I’ve never been in a hospital before, only to have a baby. You know this is all totally new to
me. So knowing the type of operation I was going to have to undergo, they were going to split my chest,
take out my heart, put me on a machine, work on my heart, and put it back in and sew me up… it was
rather overwhelming and so I had to face facts that this might not work out too well. So I better just
prepare, hope for the best and plan for the worst. So I got all my affairs in order and my son took me to
the hospital about 6:30 in the morning. I had to wait about three weeks to have the operation done
because the surgeon said look, this is not. We’re not going to have to take you to the operating room
right this moment and you need to make a plan and I mean weeks not months because you could
possibly have a serious heart attack. I had never had a heart attack so anyway I made plans and it was
about 3 weeks and I went. It’ll be about five years in August and I remember going into the operating
room thinking well, you know I can't do anything about this situation. I am no longer in control and so
needless to say I am a fairly religious person so I did a bit of praying and said if this is it, then that’s it and
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I’ve had wonderful ride but I sure would like to ride a little further. When I was coming out of the
anesthetic, of course they had this big thing down my throat. I warned my friends because I had people
there waiting for me to come out. My poor son was a nervous wreck and so anyway I told them you
know I’m going to look terrible so don’t get upset. I know I’m just going to look horrible and so anyway
when I came out of the surgery, I open my eyes and this thing is down my throat and all these jars and
pipes and everything else and I saw these people standing there and I thought well I guess I must’ve
made it. Either that or there’s been a mass accident somewhere. All these peoples are riding along with
me but anyway it wasn’t long before I came out of it and realized that I made it but it certainly changes
your perspective a little. It really does. You start to be thankful every day, every day, I’m thankful. Every
morning when I get up, no matter even when… I sound like Pollyanna but even if it’s a lousy day I think
there are no lousy days. There really aren’t, no. So I’m just grateful and then I’ve had both of my knees
replaced and uh I was a little concerned about that; the first one and I remember saying to the doctors,
nurse “Do you ever operate on people that have had a heart operation?” “Oh are you kidding?” she said
“Of course we do all the time.” I said oh good. So anyway I had my one knee done and I really had nerve
enough to go back and have the other one done and that’s it. I’m done for a while. I hope.
L. You should be in good shape for the next fifty.
C. I hope so; I hope so because it’s been wonderful. It’s been a great ride and I loved every second of it
and I have no complaints and no regrets. I always say I sleep very well at night because it always amazes
me when they talk about, uh, oh some of the programs that you see about people have a secret or they
have something to hide. I heard somebody say once “He who hides nothing has nothing to hide” and I
guess that’s me. What you see is what you get. That’s all there is to it.
23:53:50:15 – 23:54:28:16
L. Charlotte I wonder what you think one of your biggest accomplishments has been?
C. Oh my gosh.
L. Or one you take the most pride in.
C. I really think I take the most pride in my work with the mentally challenged. Yeah, definitely,
definitely, yeah, yeah.
23:54:28:17 – 23:58:47:08
L. Charlotte I’m wondering who has been the biggest influence on your life and what did that person
teach you?
C. I would have to say that it was my mother. Again I’m going to try to say this without tearing up but
she was fantastic. She was the oldest in her family. She had three other siblings and her youngest
sibling, a boy, was born with a heart defect. In fact heart disease is the only that really has run in my
family on both sides. Other than that we’ve been very healthy but there is some heart disease there.
And he had, I think, back in those days what they called… he was like a blue baby or a leaking heart but
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today they could have fixed it in you know, time but back then and he passed away when he was about
seven and my mother adored him and took care of him a lot and so forth and so on. And um she was
just a person that, my gosh, I mean everybody um, everybody just adored her. She, she was uh, she was
always a help to anybody that wanted help and she was very close to her mother; took care of her
mother a lot. My grandmother was never really, really down ill but needed a little help once in a while
and my mother always was there. And she was very close to her sister and close to her brother. Her
brother was a bachelor and always lived with the mother. And uh, she just, oh my gosh, she just she was
wonderful. I mean she was wise, very wise woman, very wise and as I may have mentioned at one time
or another when this happened with Beverly, she was sympathetic to the point but after she just got
tired of me feeling sorry for myself for about a week, uh, one day she didn’t live too far from me so she
would be over at my house or I’d stop in at hers but she said to me “If you don’t snap out of this, I’m
more concerned about you than I am about that child.” She said “You have other people in your family
to live for and you just got to stop this and pull yourself together.” And you know it was so unusual for
my mother to talk to me like that I was like taken back and I thought for a minute, you know, and then I
thought well you know what, she’s right. She’s absolutely right and I, I have to pull myself together
because this isn’t going to change and I’ve got to cope with it and I can't do it just carrying on the way I
am so let’s get with the program so but she was, she was fabulous and my father wasn’t an easy person
to live with. He was very controlling but she went along with everything pretty well and she lived with
her mother in law for her whole married life really and uh her mother in law, she wasn’t really. She was
very nice and a good person but she was kind of straight laced. She was a little strict and my mom was a
little more laid back but she was, she was fabulous and I think of her constantly. Yeah, she was great; a
great influence. I wish everybody could have one just like her. That would be great.
L. Thank you.
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