Visionary Voices Interview with Patricia Whalen
November 6, 2013
CHAPTER ONE: BACKGROUND AND EARLY CAREER
18:20:51:05 – 18:21:06:02
Q. My name is Lisa Sonneborn. I’m interviewing Pat Whalen at the ARC of Chester County on November 6th 2013. Also present is Paul Van Haute our videographer and Pat do we have your permission to begin our interview?
A. Yes.
Q. Thank you. I'm going to start with an easy question. What is your name?
A. My name is Patricia Whalen.
18:21:31:10 – 18:21:40:21
Q. And what is your current or former occupation?
A. Well I'm retired now, but I was a registered nurse for a number of years.
18:21:55:20 – 18:22:03:02
Q. Growing up, Pat, did you have any personal experience with disability?
A. None. None whatsoever.
18:22:04:00 – 18:22:44:03
Q. Do you remember how people with disabilities were regarded in your community growing up?
A. Well, I lived in a very small community; Drayton Plains in Michigan was a town of population 2000. Both my parents, my grandparents lived in the same town so we knew everybody in the town and we always knew that there were some that were a little different but that was never ever talked about or shown. I grew up in what would be considered today a very idyllic situation.
18:24:43:13 – 18:25:11:22
Q. What kind of nursing did you do in your early career?
A. Well of course I really didn’t work too long after I finished my schooling because I got married but I worked mostly in the newborn intensive care. Okay I worked with the little preemie babies and I loved that and then I got married and had four children of my own to take care of.
18:25:13:18 – 18:27:33:04
Q. Pat when you were going through your nursing training, were you taught about disability - you and your fellow students?
A. Not much, no. It would be worked in in some of our medical/surgical nursing classes but there was never any big talk about it. Really my only real experience with disabilities, you know as a student nurse you had to work a lot of shifts like weekends and things like that to cover hospital needs and students were free labor so we got a lot of that and I remember that we had a, what they called a special nursery, and you could go … I was assigned there one day and it was staffed by a practical nurse which was a little unusual back in the fifties, but anyway her role was to take care of newborns that had developmental disabilities - only we didn’t call it that. We called it mentally retarded, ok? And we even called these children mongoloids. That was the term that was used - mongoloids - and they would be placed in this special nursery until they could be… because they were taken from their mother at birth. And so one of the things that I did that day was to feed this baby, and since I was there for an eight hour shift I fed the baby several times and the baby didn’t look that much different to me than any other baby, but then I was very young. I was probably about 19 at the time so.... and I felt unhappy about the fact and it felt strange that a mother would [not] have this baby but the nurse told me that “that’s what we do because this baby is going to go to an institution or a home - an orphanage kind of place because it'll never be right, and it'll be too hard for the parents to have that kind of child in the home.” And that’s all I knew about it.
18:27:51:00 – 18:32:32:00
Q. Pat, you mentioned that there was a particular ward for infants with disabilities who were being taken from their parents, with permission of course, and sent to institutions. I wondered if I could ask you a little bit more about that; about what mothers were told, perhaps about having a child with a disability and why they should be sent to foster care or institutions rather than go home with them.
A. I have to tell you that I didn’t know very much about it at that period of time, when I was a student nurse. That was not anything that was brought out in a classroom lecture or you know in the textbook. There’s nothing written in the textbook that says when a mother delivers a child that has a disability this is what you say, this is how it’s handled. In nursing everything is by procedure and there was nothing written. So that was why I was a little… I wasn’t aware to any great extent that we had this nursery. That wasn’t part of our regular normal nursery and so, therefore, I felt that it was maybe something that was different - not an ordinary thing. What the practical nurse told me was that it was just something that happened when ladies gave birth because I think she realized I was fairly naïve at 19 about all of this, and not very wise to the ways of the world. And you know as you're younger, you tend to be idealistic. Who would ever take a baby away from a mom? Well you don’t understand this baby is never going to be the same as other children are and it’s too hard for a mother to take care of this baby. When I really knew about it… as I say this is kind of informal. There was nothing that said we had a nursery for special needs children. That was never talked about and, remember, this would not be an everyday occurrence, so it wasn’t staffed as you would staff a regular hospital ward - but this was just a place that we had. It was a small room. It had a couple of cribs in it and a rocking chair, you know, a desk, that kind of thing. So if there were some of the children that were born who had disabilities, this is where they were placed rather than in the normal nursery with the other children. Now, when I really found out about it was when I went into the labor and delivery room; that part of my clinical experience and there that’s when I would hear unfortunately - it doesn’t happen all the time- but occasionally there would be a child with Down syndrome as we call it now and then it would be the doctor saying… now you’ve got to remember we’re going back in history where there weren't ultrasounds. Where their weren't… so when a baby was born it was, you know, a shock. You didn’t know it until the baby came out and there would be this child who was different, and I'm speaking mostly about Down syndrome because that’s very identifiable right at birth. It doesn’t mean that there weren't other things. Of course we had children born with spina bifida and we had children born with hydrocephalus and other conditions like that, but there it was a medical emergency when that child was born. I think the thing that bothered me the most is that with a Down syndrome child, a Down syndrome child looks like any other baby except for a few anomalies. You don’t have the medical emergency going on where you have to get the neurosurgeon in and that kind of thing, so that was when they would say to the mother “We’re taking your baby.” And she would not of had any proper time for that in her prenatal time, and the decision was made almost for the mother. That had been my experience. I'm not saying its universal but if you're asking me what I saw ,that’s what I saw, Lisa.
18:32:33:17 – 18:33:34:25
Q. Did you experience the mother’s reaction to that?
A. The mother’s reaction is always, well the ones I saw and, again, we’re not talking about a large sample here, but the ones that I saw - mothers were usually just numb. And I'm not saying that perhaps after the mother got back to the, after recovery and so forth that there wasn’t more time and effort put in by the physician. I'm only telling you what I saw in the delivery room because unfortunately some of nursing is very compartmentalized. So if you worked in the delivery room someone else or another nurse took the baby and put it in the newborn nursery and so forth. So I didn’t have a total picture of anything. That’s, I think, the important thing. Nursing did not, my nursing background, did not give me a picture. Only just little pieces of what was going on with children with disabilities.
CHAPTER TWO: PAT HIRED AS SCHOOL NURSE FOR CHESTER COUNTY ARC
18:33:41:10 – 18:39:07:24
Q. Pat, most of our conversation today is going to focus on your work with the ARC of Chester County. So I wanted to ask you how you first became involved with the ARC. Who hired you? What brought you there?
A. Well I had gone back to work after 12 years of being home with my children and I went back into nursing. I went back into what was called at Chester County Hospital the maternity department, a very favorite place of mine, and working in maternity. It was a difficult role as a staff nurse but because I worked rotating shifts - I worked weekends- and I had a family at home of four children so I was working in the delivery room and we had a clinical instructor with the student nurses. Chester County Hospital at that time had a school of nursing attached to it so there were student nurses and the clinical instructor was always with the students but of course, as a staff nurse, I was also part and parcel of their experience; being with them, showing them what to do, and as a result I became friendly with the clinical instructor, the nurse, and she was the one who said to me one day as we were sitting and saying this is really tough, all these changing of shifts and now I have to go on afternoons. I'm not going to be able to see my kids’ things at school, whatever, and she told me that there was an opening for a nurse at the Chester County Association for Retarded Citizens. I had never heard of that place. I didn’t know what it meant but she said they were looking for a nurse. They had written for “they”, you know, always the “theys”. They had written for a grant and the grant said they had to have a nurse and they didn’t know how to recruit a nurse or where to go, and she said she was on the lookout for somebody who might be good and she suggested that it would be a good fit. I would be a good fit for them and it would be a good fit for me. I wouldn’t have to rotate shifts. It would be days only, no weekends and I said “I don’t know anything about children who are retarded.” I didn’t have anything about… there was no course in nursing about retarded children and she said “You'll be fine. You'll be fine. You're a good nurse, you're a nice person”, that kind of thing. And so I sent my resume and I was called for the interview and I met Ruth Wood and Esther Underhill and I was quite nervous because by this time I started to think wouldn’t it be nice if I just worked days and I had my weekends off and I had school holidays off, and all of a sudden that was looking like a really great opportunity and I thought how am I ever going to convince them that I’m the person they need to hire because I don’t know anything about mentally retarded children. But I think as we spoke that day that we just kind of… it was one of those kinds of days where you had empathy with the person that you were with. I found out that they both had children who had developmental disabilities and that they were very interested in this Tom Thumb daycare program that they were looking for the nurse to be of service in and so I went home and I said I really think I’d like to work for them, and they called and said “you got the job!”. And I was very excited. I knew it was going to be very different. I went to their office. Their office was not what I was used to. The hospital is so routine and everything is set up routine because that’s how you handle the stress and the pressure that comes with dealing with people who are sick or you know all of the problems that are there. You have a very set routine and this office; I mean it was the second story of an old building. I later found out it was built in 1792. It was on the historic register in West Chester and so it was like an old apartment, you know? In the bathroom was a bathtub, and in the bathtub that’s where they kept their supplies; office supplies, you know, their paper. And I'm like, well this is not exactly like it is in a hospital setting but they were such nice people and everyone in the office was so nice and I thought I'm very lucky to have been hired, and to this day I would tell you I'm very lucky to have been hired.
18:39:16:12 – 18:44:52:03
Q. Pat, you mentioned that these two wonderful parent advocates, Ruth Wood and Esther Underhill hired you to be the school nurse for the Tom Thumb program. I'm wondering if you could tell me what the Tom Thumb program was and why was it necessary?
A. Well I didn’t know why there was a Tom Thumb program and I found out as I tried to find out something about the agency that hired me since I knew nothing about association for retarded citizens. What did that mean? What did they do? I found out that when parents were told to put their children away, not have them at home, it would be too difficult to raise them, it would be too hard on them, and too hard on the family and I don’t remember that much was said whether it was going to be hard on the child or not but that was… those parents who really didn’t want to do that, who really felt the need to raise their own children whether the child had a problem or not. I found out that they were then faced with a lot of difficulties. It was not really that easy to raise a child with a disability. So the association for retarded citizens was organized as an advocacy agency and their role was to try to find solutions to the problems that the parents were having and one of the things that they decided was that if they could have the children, of course at that time there was no right to education that was… I started in 1970 with the Association; my employment and at that time the courts were considering Right to Education but I don’t think that was talked about a lot.
I was the nurse. We didn’t go into policies and things like that but I found out that they didn’t have, these children, were not accepted into schools. I had never really thought about that. What would it be like when my kids grew up and turned five and I was waiting for them to go to school like all mothers were and somebody said well they can't go to school and they couldn’t go to school because they weren't potty trained and they couldn’t go to school because their IQ wasn’t high enough. I never thought about that. if you never faced it it’s a totally new concept and I'm like, wow, that would be bad and so the Association for Retarded Citizens established this Tom Thumb which was a daycare program and they had a program for the children from 9 to 11:30 Monday through Friday, and these were called their center programs and they were held throughout Chester County. They had four of them when I started in 1970 and they were held in churches. Most Protestant churches have Sunday school classrooms and so there was a classroom and they used volunteers or of course some were paid but at the time that I started many of the teachers were also involved in some way or other with having a child or maybe someone in the family having a child who was disabled and or not included in the school, you know, in public school or other schools. So this was a way for the parents to have actually you know and I'm being honest here; the parents got a little bit of rest, but every day, if the child went off to school. Now they had to charge tuition, of course, and they had to provide their own transportation to get their child there but for that two and a half hours the child was in a structured activity program which benefited the child and it gave the parent a little bit of relief. And they wrote the grant because federal monies were coming available to look at programs for community programs like this that would then there would be no tuition. They would be able to have more teachers, hire more teachers but they also had to go out and recruit from a broader community not just those people who could afford to pay the tuition and that was the reason for hiring a nurse and a social worker as part of the grant requirement.