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I. Early Years, Goldwater Memorial Hospital, Education, Activism, 1945-1973

Family background

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^[1] Jacobson

Marilyn, let's start out with something simple. Tell me where and when you were born and about your family.

Saviola

I was born in 1945, in New York City. I was born in New York Hospital, which is in Manhattan, but grew up in the Bronx--the only child of my parents. My parents are first generation Italians and we lived, up until I was five or six--in an apartment house in the Bronx with my grandparents, my maternal grandparents. Then when I was about five years old, six years old, we moved to our home. We bought a home, one of these mother-daughter houses. And I lived upstairs with my mother and father and my grandparents lived downstairs. And I lived there--until I was a teenager at about 17.

Jacobson

Where?

Saviola

In the Bronx, in the North East Bronx , around East 233rd Street, around there. And when I was ten years old, I became disabled. But up until then, I had lived in this little suburban area. And actually after that, when I wasn't living in an institution, that's where I was living.

Jacobson

Okay. What were your parents names?

Saviola

My father's name was Peter, and my mother's name was Camilla, but they called her Millie.

Jacobson

And what type of work did they do?

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Saviola

My father owned his own business. He had a candy store/luncheonette. And lots of times my mom was between a stay-home mom and helping out in the store. She would go in several days a week to help out. One, she would do the bookkeeping for him and stuff like that. She had a little cigar box that she kept all the bills in. She actually worked at the store helping my father out behind the counter several days a week for a few hours.

Onset of polio, 1955

Jacobson

Can you talk a little bit about when you became disabled?

Saviola

I was ten years old, it was August of 1955. It was during when they had all the big polio epidemics. And the Salk vaccine had just come out a year or so ago, but I hadn't been vaccinated yet. I was supposed to do it when I went back to school in September. We were away in Connecticut with some family, my mom's family, my mother's cousins or something. And I got sick there.

I woke up one morning with a horrendous headache and stiff neck. We didn't know what was wrong, and that day I kind of just went through the day, but really feeling horrible. That night I had a high fever and my mom called my father to come and get us. Because apparently, as a kid, even with all the childhood diseases like measles, mumps, I never ran a fever. So when I had a fever, she thought something was wrong.

They took me home to the Bronx, and the doctor came to the house and said I had to be admitted to the hospital. They didn't know what was going on. At the time, they didn't know if I had polio or meningitis. The doctor didn't want to scare me so he spelled out polio so that I wouldn't understand they took me to this place called Willard Parker Hospital, which had a contagious disease unit on it. So they put me there.

Jacobson

In the Bronx?

Saviola

No, in Manhattan. It was right off the FDR [Franklin Delano Roosevelt/East River] Drive, by the old Con Edison Plant.

Jacobson

Is it still there?

Saviola

No, they condemned it many, many, many years ago. [laughter] And I remember lying in the bed, and I remember getting better. I mean, waking up in the next day and everything is fine. Then all of the sudden getting very sick again. I don't remember anything except lying in bed, and being on my side and not able to turn back onto my back and the next thing I knew I was in this iron lung.

I was in this huge room where I guess there were maybe four or five other people, and they would always die--apparently I was one of the few people who ever survived in that room. And since I was a kid, and they wouldn't tell me they died. They told me they went to rehab. [laughter] You know, it's--whatever. So I stayed there until I got over the contagious stage and was weaned from an iron lung and was able to use a chest

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respirator, and then I went to Goldwater [Memorial Hospital] for rehab. I spent another couple of years, or maybe a year and a half or two years there. Then I went home to live with my parents and grandparents in a totally inaccessible environment. The house that I lived in was what they call a mother-daughter house. The basement was converted into an apartment and my grandparents lived there and we lived on the main floor which was 13 steps up to get from outside into the house.

Impact of disability on home life

Jacobson

How was that?

Saviola

It wasn't bad when I was young and "carryable." Because my parents would, you know, carry me downstairs. Someone was always around. But as I got older, and it was harder to get out, and as I wanted more freedom, it became a real issue. My father would either have to come home from work to carry me downstairs, or the kids in the neighborhood, would do it. As I grew older the kids in the neighborhood, would come around to hang out if they were around, but they weren't always around anymore because they were at an age now where their horizon expanded beyond the block. This meant that I was stuck inside. My independence, the ability to get outside, depended on either my father coming home or getting help from the guys in the neighborhood

Jacobson

What did you do about school?

Saviola

I received home instruction, three days a week for an hour and a half a day

Jacobson

How was that?

Saviola

I think I had some very psychotic teachers. [laughter] I mean, I had teachers who would spend the whole time talking to my mother. This one woman would spend her time telling my mother all her troubles. I had a math teacher who was very nice, and an art teacher. But I don't know how I learned anything. I really don't. All I remember the teachers doing was assigning homework and reviewing it. I have no recall on ever having actual classes, although this was supposed to happen.

Jacobson

You had an art teacher?

Saviola

Yes, I got an extra hour a week if I took art. But I had no talent, absolutely no talent, but he came once a week. But he was a nice man, Mr. Gershowitz and it was someone else coming into my home who was not part my family that I could talk to.

Jacobson

What did he teach you?

Saviola

He taught me how to use a felt tip pen, and I remember, we would dye egg shells and then he would have me put them on like a picture, like it was a mosaic, it was called. And he taught me how to make ashtrays. It was art--therapy. It was like you did in an institution, the arts and craftsy type stuff. I learned nothing about art or artists or anything about art history.

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Jacobson

Were you that coordinated?

Saviola

I didn't get you.

Jacobson

Were you coordinated enough to do that?

Saviola

It wasn't so much the coordination, it was that I had very had limited space that I was able to reach. I didn't have enough movement in my hand to move my hands much So, as long as it was in a certain space, I could do it. Then someone would have to move my hand to another space and I would be able to move my hand to cover the new area , so it would take forever.

Jacobson

Was there a wheelchair in the house?

Saviola

Yes, I used a wheelchair in the house, or I sat on a chair in the living room, like a wing chair.

Jacobson

And they carried you?

Saviola

Up and down like a sack of potatoes or as I got bigger two people would carry me in my wheelchair, bouncing me on each step. We had thirteen steps, and they would carry me up and down.

Jacobson

So, how do you think the disability impacted on your parents and friends?

Saviola

I don't think my friends really saw me as an equal. I was someone whose life was a tragedy. I know my family never accepted it, totally didn't, and always thought of it as if I prayed enough, and they were good enough, they said enough novenas or whatever, and if I believed enough, I would be cured. So this was never seen as a permanent situation. So, they never accepted it. At that point, I honestly don't think I did, either. Because, I never thought about the future. My only thinking and planning was for the present. I guess that I didn't think I had much of a future either. I never saw myself beyond today. I never thought about the future or anything like that.

Jacobson

What about high school?

Saviola

Same way, until I was about sixteen, going on into my junior year. Until I was going on sixteen or seventeen, where at that point I would go into Goldwater for check ups. Besides going into Goldwater for checkups my parents, especially my mother really, really thought that if I used the respirator less, then I would get stronger and would need it less. So they were constantly weaning me off it. And I began to have problems because of that. I wasn't getting properly ventilated, so what they call your CO₁, your carbon dioxide level, would go up so high that I almost died a couple of times. So that I would wind up in Goldwater, back in an iron lung, I almost went into heart failure twice because of this. Because of this I missed a lot of school. I was always very envious of the kids in my neighborhood because they would talk about their school activities, the social activities that is, I felt left out. Not only wasn't I getting the education that the kids were getting I was not getting a social life.

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At that point, I began to realize that I was much happier not being home but being in an institution. You know, because there were other activities, I was able to get in and out without being carried, and I saw other people there. Then I began to think about wanting to do something with my life.

Decision to live at Goldwater Memorial Hospital

Jacobson

What was the staff like?

Saviola

The staff was either the greatest or the worst. There were very few people who were just regular people. You had some people who were really, really not good people, and a lot of great, great people who really took an interest in what you were doing, talked to you, became friends with you, stuff like that. And they became friends. However there was always this boundary that you weren't supposed to be friends with the staff. I can tell you how actively this was discouraged and how hurtful this was.

Jacobson

Okay, and by staff, who do you mean?

Saviola

Anyone from the nurse's aide, to the recreational therapist, physical therapist respiratory therapist nurses, that type of thing.

Jacobson

What about the doctors?

Saviola

The doctors were, mostly residents in training and from other countries who were not very good. Then there was Dr. Alba, who was the director of the respiratory care service at the time.

Jacobson

Alba, what was his first name?

Saviola

Her first name, was Augusta, is Augusta.

Jacobson

Oh, Augusta.

Saviola

Yes, Gussie. And she's quite a dynamic woman. She really kind of helped me in a lot of ways, in terms of--once I decided I wanted to do something with my life other than being the invalid living at home, she backed me on it, and helped get me accepted into LIU [Long Island University].

Jacobson

Oh, yes. When did you decide, or your parents decide, to go to the institution?

Saviola

I kind of decided, my parents never did. Just because I was miserable at home. I had a lot of friends, but when you're getting to like sixteen and seventeen, they all would go out and I would be stuck alone. So I had nothing. At least in Goldwater I had a peer group, you know, and I got out. So, they became my peer group and my family of choice. I would go into Goldwater for an evaluation and for a respite and there was another friend of mine who was in a similar situation and every summer they would

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bring us in together for vacation. And we kind of stretched that out. Sometimes we stayed for a week and at other times we would be able to stretch it out for weeks.

You know, if there was something wrong, if I had one of the episodes and I wasn't breathing properly, we'd stretch it out for months sometimes. And Dr. Alba knew it. She knew that I was very unhappy at home and although it was never a stated thing, it was kind of worked into it and never discussed that I would stay there. And I finished high school in Goldwater.

Jacobson

Tell me about the peer group.

Saviola

On the unit that I in was at the time, most of the people had had polio, and had either never left Goldwater, or had gone home and had not good experiences and came back in. Plus a couple people who weren't with us at Goldwater And we were--oh, there was Virginia, Mary, myself, Bibi, and Bruce. I guess we had eight or ten people. We were all in our teens and early twenties.

Jacobson

What were their disabilities?

Saviola

Mostly polio, some spinal cord injuries, some cerebral palsy. Muscular dystrophy, too.

Jacobson

And then you all got together?

Saviola

We were--. Some of us were in the same room, because they tried to keep the younger people together. This was early on before they had a special unit for us, but this was like when I first went back to Goldwater.

Jacobson

What kind of place was Goldwater?

Saviola

It was a long term care rehab facility in the middle of an island in the East River, between Queens and Manhattan and the wards at the time were these huge wards--where they would have one, two, three, four-patients of different sexes and ages sleeping in living in the same cubicle. They had three large rooms and four beds or five beds in each area. So you had a cubicle about the size--maybe this width--maybe a little wider, which was your space with a curtain.

Jacobson

So something like, about six feet square?

Saviola

Yes, not even square, it was more long. A length of a hospital bed plus maybe six, or 12 inches. Longer and maybe an additional foot or two on either side of the bed.

Jacobson

Okay.

Saviola

And sometimes you had someone right next to you. On one side of the curtain, on the other side you had the whole area to yourself.

Jacobson

Okay.

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Saviola

So we would see people there, and then they would have all these volunteers who were also teenagers--like the candy stripers, Red Cross volunteers--we all became friends with them. So you developed peer groups that way.

Jacobson

Okay. What did you think about disability at that time?

Saviola

I thought it was unfortunate. I thought--I couldn't understand--I couldn't understand why this happened to me. What I had more trouble reconciling was why I was happier living in an institution than at home. And that, to me, was a really--something that I did not think anyone would understand. I had more trouble, I think, adjusting to that or coming to terms with that, rather than what I thought of disability. At that time, I thought my life could be quite happy just living in Goldwater with all these other people. But as I had more and more outside influence with these other kids coming in and doing things, I realized that I wanted to do something, too.

Jacobson

Did your parents come to visit?

Saviola

Yes, regularly. My father would come several nights a week and my mother twice a week. Everyone would come on Sundays, grandparents, aunts, uncles, cousins, the whole bit.

Jacobson

Wow. What happened--you were seventeen when you were finished with high school?

Saviola

Right, I think I graduated high school when I was like, eighteen and a half because I missed so much time because I'd been sick.

Jacobson

And did they have, like, a classroom?

Saviola

They had a one room schoolhouse where everyone was in it. Plus the home instruction teachers came, so we had both. But the teachers there were actually a much better quality than the ones I had at home.

Inadequate education supplemented by volunteer tutors

Jacobson

What kind of education do you feel you received?

Saviola

Very, very inadequate. I think the only thing that carried me initially was that I had been in a parochial school. So I was a little advanced of where the kids were prior to my disability. And when I got back into Goldwater--you know, I had tutors, a couple of the volunteers would help and tutor. That's, you know, how I got through high school, and took the regents.

Jacobson

Where did the tutors come from?

Saviola

Local high schools in the area. A couple of them came through the recreation department, they had a tutorial program. The National Council of Jewish Women had a program where they would come in on Wednesdays and Fridays and help us. Not so

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much tutoring, but write stuff, do your homework with you and you can dictate your reports and compositions to them.

Jacobson

Okay, now most places in the country don't have regents exams, can you explain what they were?

Saviola

The regents exams were competency exams that you needed to take if you wanted to go to college and get an academic diploma, as opposed to a regular or commercial diploma. So, if you wanted to go to college, you had to take regents. There were required regents, math and English. And then you could take other exams, like if you wanted to--. If you excelled and wanted to go into science or math--history, I guess, or language, you could take them. But I only took the math and the English. And I guess--I guessed my way through them. And I swear that I didn't know the stuff, I just guessed.

Struggles for admission to Long Island University, 1965

Jacobson

Wow! So tell me how you got into college?

Saviola

My friend Bruce, who was also with me at Goldwater, really wanted to be a lawyer, and he wanted to go to school. His mom was someone who was really in his corner, pushing for him. Between her and Dr. Alba, they found LIU [Long Island University]. And he was expected at LIU, and actually went on to classes from Goldwater each day. Bruce was one of my role models, my hero, so I applied to LIU, thinking that if they accepted him they may accept me. Never giving any thought to how I would get there, would pay for my education, and how I would function in the classroom and get my work done and all that. So I then had to--

Jacobson

How did Bruce get to--

Saviola

He finally got OVR [Office of Vocational Rehabilitation] at the time, DVR [Department of Vocational Rehabilitation], I guess, at the time, the state vocation rehab agency, to pay. And he got a scholarship also, so since he had the scholarship, they [OVR] paid the transportation. So I applied for sponsorship to OVR and they turned me down. They told me that my disability was too significant, and I could never work. I wrote a letter to at the time Senator Jacob Javitz, saying, this wasn't fair, they're not giving me a chance, et cetera.

The thing was that OVR said that if I could get accepted into a school, they would sponsor me on a one year trial. So I got accepted into LIU. But the first semester or two, they wanted me only to--you can classes via a telecommunications device called Executone, which was a speaker phone, so that I could hear what was going on in the classroom, and by clicking a switch I could ask questions and they could hear me. So I did that. And it was horrible--all I had was the work and none of the fun of going to college.

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Then I decided I wanted to try going out to classes on campus. So I started going out to class two days a week, and getting the Executone three days a week. I gradually worked it up to full time at LIU. At first I would never go out alone. I always had someone who would go out with me. Until I met you who would feed me lunch at school [laughter], and a couple other friends. I started making friends.

Jacobson

[laughs] It turned out to be good practice.

Saviola

Yes, yes.

Jacobson

But you, how did OVR, or DVR, support you?

Saviola

They provided my transportation, and paid the tuition and books.

Jacobson

And how did you get connected with DVR?

Saviola

At the time, Goldwater had had a vocational rehabilitation counseling program. The rehab counselor was the one who referred me to OVR.

Inadequate accessibility on campus

Jacobson

Okay, tell me a little bit about LIU, it's Long Island University.

Saviola

Well, even though it was Long Island University, it was located in Brooklyn, in the heart of downtown Brooklyn, which is a very, very urban area. And the campus wasn't a campus. I think, at the time, it was two or three buildings with a little concrete area between the dormitory and the other buildings. The main building actually was in the building of a movie theater, the famous--at that time--Brooklyn Paramount Theater. They had it converted and made into the university. The reason we went there was it had the first college at the time to have a disabled students program. So the thinking was if you went there you would get all this great support, like in dealing with the professors and taking exams. As we all found out later, that wasn't so. But maybe that was to the betterment of us, because we had to come up with our own solution. So, I would go to LIU and--also because Bruce went there and had a good experience.

Jacobson

Who handled these things?

Saviola

A man by the name of Theodore, or Ted, Childs, who was a physical therapist by occupation, who actually had worked at Goldwater. So that's part of where that connection for me came down, too. So he knew that for people with disabilities to attend classes at colleges they needed reasonable accommodations, therefore, he set up the program, him and--what was that woman's name?

Jacobson

Gay Harvin

Saviola

Yes, Mrs. Harvin. Oh! We would do that, and I would go to class. Since I couldn't write, I couldn't take notes in class. What I would do is bring carbon paper with me and

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ask a student to make a copy of their notes for me I would take tests, usually, in the department office with one of the teachers either writing it, or I had to bring someone who would write the exam for me.

Jacobson

How accessible was LIU?

Saviola

At the time, I thought it was phenomenally accessible. But it really, in reality, wasn't. Most of the school was inaccessible, but what they would do is put our classes in a classroom that you can get to in a wheelchair either by an elevator or ramp. After I was there around about a year or two, they opened a new building which is much more accessible, the H building, the humanities building. Stuff like that--. I mean, going to the library was a joke because it really wasn't at all accessible nor could you get any help unless you brought an able-bodied person with you or a person whose disability was less than yours with you. I mean, the staff never offered to be of any help.

Jacobson

You probably were one of the first people there in a motorized wheelchair.

Saviola

Right, just me and Bruce. At first I didn't take my motorized wheelchair with me, so I would have to get pushed by an able-bodied person from point A to point B.

Jacobson

How did you get a motorized wheelchair?

Saviola

I don't know, I don't remember. I got it while I was in Goldwater. I don't know if they got a donation to get some, I don't really recall.

Jacobson

Because it wasn't that common.

Saviola

No.

Jacobson

What year was this?

Saviola

I graduated in '70, so this had to be '65, because I was there about five years, at least five years.

Jacobson

Do you have any recollections of--how did people treat you?

Saviola

I remember that I knew no one and being very scared. And Bruce, at lunchtime going into the cafeteria and sitting with Bruce and his friends and having lunch, and stuff like that. I used to be terrified of going in the classroom for the first time. I hadn't been in the classroom since before I was disabled at age 10, so I always got very uptight. I didn't know where to sit. I would have to try to hope someone would say hi so I could ask them to take notes. And hoped that I knew somebody in the class. And at that time, I never ran into another person with a disability in the classroom. I was always the only one, up until you were in my class with me, we did the sociology.

Jacobson

I remember two classes.

Saviola

Well, Haynes' is the one I remember--

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Recalls Judy Heumann

Jacobson

What about Judy [Heumann]?

Saviola

Judy was great. I mean, Judy always seemed to fit in so perfectly. That had never even been an issue for her. I know she had a motorized chair, but I always visualize her as zooming around, when I think about it now. But in reality she probably didn't have one, either.

Jacobson

How did you meet her?

Saviola

She came up to me. She was very political. She said, "You've got to join us, we're organizing!" Or something to that effect. And she knew some of the people from Goldwater, and Sharon Stern and all, so that's how I got to meet her.

Jacobson

What were you organizing?

Saviola

It's embarrassing, we were organizing a disabled students' organization on campus, a club, because we wanted a club like other groups. And when I think about the name, and when I reminded Judy of this, it's very embarrassing. Do you remember what the name was?

Jacobson

What name?

Saviola

The Handicapped Integration Movement, HIM.

Jacobson

Yes, but I remember that happening after she graduated.

Saviola

I thought it was happening about at the same time that Judy was there.

Jacobson

What I remember is Judy was already gone, she was fighting--.

Saviola

--the Board of Ed[ucation]. Okay, it could be. But I remember you, I remember me, I remember, a guy, and I can't think of his name. Two guys. One had red hair.

Jacobson

Jon Charnik.

Saviola

Yes, Jon Charnik.

Jacobson

And Michael Masters.

Saviola

Right. I remember them. And I remember working with them. I remember the other person from Goldwater who was attending classes that Long Island University didn't want to have anything to do with forming the group. Sharon was there.

Jacobson

Why?

Saviola

She never saw herself as doing anything except going to the classes.

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Becomes an activist

Jacobson

Why did you join?

Saviola

Because I was beginning to become an activist. I had started to get involved in Goldwater at trying to make the environment at Goldwater better. Getting us a new special unit where the younger patients with goals of obtaining an education or getting vocational training would be in the same area. The younger people in Goldwater were patients were scattered throughout a hospital in an environment which was designed for frail elderly people. Therefore the whole emphasis of living in Goldwater was designed to meet that population's needs . But the whole emphasis that we needed was different. It was on vocation and education and getting people out. And my friends who had worked at the hospital were all involved in antiwar stuff and things like that.

So it kind of all got swept up into it. It all kind of made sense. You know, we were all involved in Vietnam antiwar, activities on campus but we were also about we need our civil rights too," and I remember, we had one goal, it was to make the campus accessible. It had nothing to do about anything outside of the university. We never thought about what happened when we left. At that point, we're just making the campus accessible. And that's when we met some of the people who would form DIA, Disabled in Action. Some of those characters, who weren't on campus. Like Pat and Denise Figueroa, Denise McQuade, people who never went to LIU.

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Saviola

I remember trying--wanting to organize to help Judy with the Board of Ed stuff and things like that. And I remember ABC, which was the group that kind of started me as an activist and the disability rights movement in New York City. At that same time, you remember the Architectural Barriers Committee?

Jacobson

Yes.

Saviola

With Julie Shaw and Anna Fay and all those people?

Jacobson

Yes.

Saviola

And that kind of concurrently was going on while we were doing this stuff at LIU. Maybe it even preceded it a little, I think. So, we didn't like the way in which our needs were being ignored by the City. So we organized and began to see that we were powerful when we joined together. This was empowering. For the first time in my life I actually felt that I was part of a social movement that would be changing the way in which people with a disability participated in society. One of the people involved in your movement was Julius Goldberg. Do you remember him? I heard that his wife died recently.

Jacobson

Oh, really?

Saviola

Yes, someone had told me that a couple of months ago. But I remember, we felt that they were very conservative, that all they were looking at were very narrow issues.

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That all they were interested in was removing physical barriers. We were much more interested in fighting for equality and our place in society. They weren't very militant, and we wanted to be more militant.

Jacobson

Well, weren't they older?

Saviola

They were, they were about ten years older than us, I think. And then people like Phyllis and Anna kind of agreed with our broader goals.

Jacobson

Phyllis?

Saviola

--Rubenfield, and Anna Fay kind of broke away from them, too. And they formed NPF, the National Paraplegic Foundation.

And there were all these groups kind of loosely floating around. I don't remember the order, because we were forming so many things. There was ACCD [American Coalition of Citizens With Disabilities] that came out of a group of activists including us who were participating in meetings of the President's Committee on Employment of the Handicapped.

Jacobson

That came later.

Saviola

I remember meeting in my house, in my apartment. We used to have lots of meetings in my apartment.

Jacobson

Yes. Where is it?

Saviola

Downtown Brooklyn, right across the street from Long Island University.

Jacobson

So you were living in the same building as Judy?

Saviola

Yes. Even though I saw much less of Judy after I moved in. Because, she was then in a graduate program and getting ready to move. I graduated LIU in '70, went to NYU, New York University, for my master's, but didn't move into my apartment until 1973. So, I was kind of out of it a little bit, or just tangentially involved for that two year period, when I was in graduate school.

And I think what kind of happened is when DIA started, Judy came to me and said, "Can we have the meetings in your apartment," or something like that, because my apartment was larger than hers and she had roommates. She was always having different roommates.

Disability in a sociological context: getting more militant

Jacobson

Yes. First of all, what happened on campus?

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Saviola

On campus we formed an organization. We had to get a faculty sponsor, and we got one. Al [Alphonso] Haynes became our faculty sponsor, he was our sociology teacher.

Jacobson

Now, why did they pick him instead of Ted Childs?

Saviola

Because Ted Childs wasn't doing anything. Part of our issues were against that office, and the fact that the office wasn't responsive to our needs. So we could not very well have picked him as a faculty advisor. So what we did is approached Professor Haynes because we knew he would be an activist and also because we knew that he shared our beliefs. I guess that he was the person you and I knew best and admired best as a teacher. At that time he was our sociology professor. Al Haynes challenged us to look at our disability as a sociological concept. You know, as a minority group and with all its ramifications, which I had never done before.

Jacobson

What would he do?

Saviola

He made us think. He would challenge us to look at what was happening, why we were--why people were not aware of our issues. Why people discriminated against us but never really thought they were discriminating, or it was anything. Why society attributed certain characteristics to us. And he got us to look at it, and he said, then why are you different than people of color? Why are you different from gay or lesbian people? Why are you different than any other minority group person. And he would challenge you.

Jacobson

So he put a name on--

Saviola

--yes, he put a name on it. He said, yes, these things are going on, but these are sociological concepts. These are things--so he gave it a fresh--.

Jacobson

You never thought--

Saviola

I just thought this was the way my life was, I never had analyzed it any way academically or looked at why. It was just, this is the way it is, not why.

Jacobson

And he gave it a framework?

Saviola

Yes, and at the time we were beginning to get much more militant about our movement. Wanting for change to occur through the goodness of well-meaning--this wasn't enough. We would demonstrate, we would do things, you know. I remember at the same time in those early years--I had briefly mentioned that at the same time I'd got very involved with the politics of Goldwater with my peer group. Since Goldwater was 99 percent, 98 percent frail elderly, many times very disoriented, people, we felt that all the programming activities had been geared to that population and not ours. So what we did was ask for a special unit with special services, which we got, that had hand selected people to work with us, people who didn't wear uniforms. We had our own social workers, psychologists, recreation therapists, and activities were geared to helping you get out. So that if I had a nine o'clock class, the night shift would get me ready. Where if you were in a regular institutional part of the hospital, no one would think of getting you ready on time so you can go to school. That had no priority.

---

Jacobson

Marilyn, how did they start it? What were the steps?

Saviola

A group of us really started saying we need to do this, we can't survive, we want to get out of here. But we're going to have to be here until we can get out, so we can get an education, get some training, whatever. We need the supports.

We got Dr. Alba, actually, who was then the assistant director of rehab, to listen to what our concept was. And she backed it, and then we got some of the other professional staff to go with it, and they decided to do this as a research project. So they created a young adult unit, which really was-an amazing feat considering the bureaucracy and lack of insensitivity and understanding of the hospital administration. The whole emphasis was that you had to have a vocational, educational, or independent living goal to be on that unit, and everything was geared to helping you get out of the hospital and into the community.

Independent living without key elements

Jacobson

So, was there, at the time, a real concept of independent living?

Saviola

Yes, it didn't have a name, but it was the concept.

Jacobson

And was it the same concept?

Saviola

No, it was getting people to live in their own apartment in the community, but it wasn't empowering people so that they could do it on our home. It wasn't a concept that reached the importance of peer involvement in the process. You worked with professionals to help you do this. So there wasn't the empowerment or the peer element of independent living. The only peer element was the support you got in the process from other people who were going through it at the same time. Not mentoring.

Jacobson

Okay. Dr. Alba, tell me what she was like.

Saviola

Right now, she's about in her late seventies. When she first came to Goldwater she was a resident physician in rehabilitation. We met in her when she was a resident. She then went on to becoming a neurologist as well. And she had seven children, and worked full time, and she really believed that people with disabilities don't have to spend the rest of their lives in institutions. Given the supports and proper services you could do anything, and she really fought for that.

Jacobson

Did you have any feeling about where she got that?

Saviola

I have no idea.

Jacobson

Because there were so many people in that profession who didn't have that idea.

Saviola

Definitely.

---

Jacobson

So what made her more aware?

Saviola

I don't know. Except that, I think--that when she was in medical school and into residency, that she was either the only woman or one of the few women. What she said, she felt at the time when she was in her residency and in medical school that she was the only woman in her program, and she was constantly told, "You can't do this, you shouldn't do that." I think she had no way to direct her feelings about this and channeled them to helping people with disabilities to live independently. Maybe we got some of the fallout from it.

Jacobson

Or maybe she became aware through--

Saviola

Right, and she always said, "Well, why not? Why should someone spend their lives in an institution just because they were disabled. Why?"

Demonstrations against Office of Vocational Rehabilitation and Goldwater Memorial Hospital

Jacobson

Okay. Tell me about LIU, I mean NYU.

Saviola

--one of the last, one of the first significant--two of the most significant things that happened at that time were my involvement with DIA and the disability rights movement at LIU. There were two demonstrations that stand out in my mind. The first demonstration I ever went on was one against OVR. They were going to limit college sponsorship for people with disabilities. We protested outside of the governor's office demanding our rights I was living in Goldwater at the time with the two other people, Roberto and Mary, who were also living there who went on the demonstration.

Jacobson

Mary who?

Saviola

Mary Ruth. No, it wasn't Mary Ruth. Mary Ruth was already go--right. Who was the third person that was with me? Maybe it was Mary, I can't remember.

Jacobson

And Roberto?

Saviola

Roberto Goldberg, who subsequently went to LIU later on.

Jacobson

I remembered the name. I can't--.

Saviola

Yes, I was going out with him at the time, that's probably why you remembered him.

Jacobson

I can't remember why.

Saviola

So, we wanted to go on the demonstration and if you were in Goldwater you needed to get a pass if you were going out. And the doctor refused to give us a pass, so we had to sign out against medical advice.

---

And, I remember as we were signing ourselves out, they were taking our stuff. You know, your clothes, your possessions, and putting them off the ward. And we were gone something like five hours, and when we came back, we had been discharged and they had to re-admit us. And they put us on different wards, in a different part of the hospital. That lasted for about two days until Dr. Alba could get us back together on the young adult unit. So that was the first demo I went on.

Jacobson

How did you get there?

Saviola

We used the van service that OVR was paying for us to go to school. I had a couple trips that I hadn't used from OVR. And I just said I needed to go there, it was a field trip. It definitely enhanced my education

Jacobson

What was that system at OVR? Did you--

Saviola

You get x amount of trips for school based on how many classes you have. If you didn't use them, you could use them for other school related things. So I said it was a field trip. In a sense it was, a great education and learning experience for me.

Jacobson

Then what happened?

Saviola

So, for the next night we were all separated and by the end of the next day, we were all back to our regular area. The other thing I remember is when they were going to be closing the young adult ward because they felt that the hospital administration felt that we were getting too militant--that we had gotten too many privileges and too many things--we had a demonstration to take over the main lobby of the hospital and DIA came in with us. And we took over the whole administration suite, and we blocked the entrance and we had the state senator coming in and all that. And we won the that fight, too. We had taken over the whole lobby, wouldn't let people in. You were there, I think.

Jacobson

Yes. You won the fight against OVR?

Saviola

Yes. OVR did not cut back school programs that year. We were able to go to college in the summer in graduate school and graduate school as well .

Jacobson

What were you thinking at this time?

Saviola

How powerful we were. It was the first recognition I had that we could be powerful as a force. The fact that--. Look, OVR was one thing, but the fact that my home had been protected and we had been listened to in this institution was incredible.

Jacobson

Do you remember what year that happened?

Saviola

It had to be '70, or '71. It had to be '70 or '71.

Jacobson

Okay. You were there during grad school?

Saviola

Yes.

Jacobson

What was grad school like?

---

Saviola

He was a sheer administrator. The only thing that happened with him that was helpful was his--.

Jacobson

Who?

Saviola

You asked--

Jacobson

I said "grad school."

Saviola

Oh, grad school, I thought you said Grascow because he was the administrator. Yes, I was there--.

Jacobson

Grascow was--

Saviola

--the administrator. And one of the reasons we were able to get to him was we become friends with his niece who was doing a summer internship there.

Jacobson

At Goldwater?

Saviola

Yes, but I did graduate school there as well, which was actually much easier.

Jacobson

What was Grascow's first name?

Saviola

I don't remember. His niece's name was Marlene.

Jacobson

Was he a doctor?

Saviola

No, I think he was a business type person.

Jacobson

Okay. Anyway, could we go on?

Saviola

Yes. For about ten more minutes, is that okay?

Jacobson

Yes. Is there anything else about LIU?

Saviola

No, no.

The ordeal of graduate school, 1970

Jacobson

You said you went to NYU [New York University]?

Saviola

Well, NYU was interesting. I decided that I wanted to be a rehab counselor because I wanted to work with people with disabilities. And I worked very hard to get OVR to sponsor this, but I really fought hard.

Jacobson

Why did they not want to?

---

Saviola

Because at that time graduate school was something they didn't readily sponsor. You were supposed to be able to do something after you had your bachelor's degree.

Jacobson

What did you major in at LIU?

Saviola

Psych. So, I wanted to go to NYU, I had always wanted to go to NYU, I don't know why. So I applied for admission into the program, I completed the application. And I was very up-front about my disability. I went for the interview, and the building where the program was housed was off-campus. NYU had all these buildings all through the village that were not necessarily on the main campus. And the building that I would have classes in was called the Barney Building. And it was on Stuyvesant and Ninth Street.

So I went there, and we pulled up, and there were steps going into the building. So I said to the driver, "There must be an accessible entrance around the corner--maybe on the other side." He went and comes back and said there's more steps! So I said, "this must be a mistake." He said, "Well, who are you supposed to see?" So I gave him the name, the woman's name was Dr. Patricia Livingston, she was the chair of the department. She came into the van, "Oh, I am so sorry! I didn't know you would have trouble with the steps!" I said, "But I told you I was in a wheelchair." She said, "Yes, yes, yes, but we've had other students in wheelchairs, we had one last year as a matter of fact in a wheelchair." I said, "Well, how did she manage?" She said, "She would get out of the chair and we would carry the chair up and then she would walk up the steps." I said, "I can't do that." [laughter] So she said, "I'm so embarrassed, da, da, da, da, da."

Anyway, so she conducted the interview there with the proviso that if I got accepted, they would make it accessible. So this was in the spring of '70. [interruption] There was this whole thing back forth about NYU and the city, about getting a waiver to put the ramp on, they wanted to put a wheelchair lift, but they didn't think it would be safe from vandalism because of the area. They wanted to put a concrete ramp but they couldn't get permission from the city because it would extend into the public sidewalk. So what they come up with is a wooden ramp.

The first day I went to school, graduate school, the driver got out and he had to go in and tell the doorman that I was there. Then maintenance man would come out and assemble the three platforms of the ramp. At the time, motorized wheelchairs were not very powerful, and the wheelchair wasn't powerful enough to go up the ramp, because it was steep, with just the driver. But maintenance had been told that they couldn't touch the wheelchair because of liability issues. And we were told, that my driver, couldn't touch the ramp because of liability issues.

So what he had to do was go in the classroom, ask one of my fellow students--who I had never met--to come out and help me. And this would happen every time I would go in and leave the building. That lasted a few weeks until people got to know each other. Then everybody just kind of helped out. Students got the ramp, maintenance would push me up. Anyway, but permanent ramp was never built until after I graduated. It took them that long, it was a two year graduate program.

Jacobson

Was there a disabled students program?

---

Saviola

No, no, no.

Jacobson

Not at that time, that was '70, when you--

Saviola

Yes, thirty one years ago.

Jacobson

That's the way you made it through grad school?

Saviola

Yes, yes.

Jacobson

Did you ever try to argue it?

Saviola

I tried arguing, we threatened litigation. But I was always promised next semester, next semester. And they literally started building it after I graduated. Again, at that time it was the only way of my of going to graduate school. I had a way of getting in and out of the building in getting to classes. My conscience, at the point I wasn't at the stage of being fully comfortable fighting for my own rights. I don't know what word do I want to use, consciousness, or whatever--where I would have challenged why isn't this happening faster? I had a way to get in.

Moves from Goldwater Memorial Hospital, 1973

Jacobson

Yes. When did you decide to move?

Saviola

I decided to move when I was finishing up at LIU. And at that time I was involved with Bruce, the man who went to LIU from Goldwater and who moved out of Goldwater first. And he moved into the Towers, which is the housing across the street from Long Island University. That's why I moved in, it was accessible and I wanted to be near Bruce.

Jacobson

Did he have polio?

Saviola

Yes, yes. He had a very similar experience as me, being at home and not being able to handle it at home, and coming back to Goldwater.

Jacobson

Okay. Now, what happened? How did you get out?

Saviola

Well, it took me, I would guess about a year in and a half or two. I didn't want to get out until after I graduated. I wanted to go to graduate school first, because I just thought it would be too much getting used to living on my own and completing school at the same time. So, I graduated in May of, I guess, '72, and I started working at Goldwater as a rehab counselor in July of that year. It took me until January of the following year, '73, to get my own apartment.

Jacobson

How did it happen?

---

Saviola

I knew I wanted to live there, because Bruce lived in the complex. I knew it was accessible, and I knew I'd like the apartment because I'd been to Judy's apartment. So, we kept calling them and calling them. There was a great social worker at Goldwater who really helped me.

Jacobson

What was that person's name?

Saviola

Beverly Diamond.

Jacobson

Okay.

Saviola

I need to stop now.

Jacobson

Okay.