18:20:51:05 - 18:21:06:02

Lisa: 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?

Patricia: Yes.

Lisa: Thank you. I'm going to start with an easy question. What is your name?

Patricia: My name is Patricia Whalen.

18:21:31:10 - 18:21:40:21

Lisa: And what is your current or former occupation?

Patricia: Well I'm retired now, but I was a registered nurse for a number of years.

18:21:55:20 - 18:22:03:02

Lisa: Growing up, Pat, did you have any personal experience with disability?

Patricia: None. None whatsoever.

18:22:04:00 - 18:22:44:03

Lisa: Do you remember how people with disabilities were regarded in your community growing up?

Patricia: 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

Lisa: What kind of nursing did you do in your early career?

Patricia: 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

Lisa: Pat when you were going through your nursing training, were you taught about disability - you and your fellow students?

Patricia: 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

Lisa: 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.

Patricia: 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 naive 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

Lisa: Did you experience the mother's reaction to that?

Patricia: 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.