Simi Linton
I got married when I was nineteen, lived on my own, found work, then moved to
Boston, and got married to John Kelly, and in 1971, I’m skipping over lots of years, but
in 1971, the war was raging in Viet Nam, and I had already been to a couple of
demonstrations, had trained as a Draft counselor, was working with young men trying to
avoid the Draft, was just getting started with that when the 1971 demonstration in
Washington, on April 1, was being organized, and one of the major factors was that the
vets would come back, many of them disabled, although I wasn’t, I was conscious of that, but not as alert as I soon became or a part of that force, and I said to my husband, John, and to my best friend, Carol, that we should go. Well, on our way to Washington, we were in an automobile accident and I became disabled. My husband and best friend died in the accident. The date was April 23, 1971, well, probably the 22nd, because the demonstration was the 23rd. We were on our way to D.C. I thought the demonstration was in downtown Washington, but now I haven’t done that research. I think it was the
March on the Pentagon, that famous photo.
I read recently James Carroll’s book. I have it inside and I’ll show it to you. It’s
a beautifully written memoir about his father. James Carroll was a Jesuit priest. He is no
longer, but his father worked in the Pentagon and he was a pretty big muck-a-muck in the
Pentagon, and Carroll got involved in the anti-war movement and describes one scene
where he was demonstrating outside his father’s office in the Pentagon. His father didn’t
see him, but later he found out he’d been there and James Carroll was aware that his
father was in there and what it meant to him. It is a beautifully written book about it.
1 So I was in Rehab and the hospital for about a year and I had been a college dropout. I had been working temp jobs and so forth. I had dropped out in 1965, after two months at Temple University, and then I decided, you know, well, what am I going to do now and I said, “Well, I’ll go to college,” and I went back to the new school for two years here in New York City, and you know, just kind of trying it out, you know, what was
going to be. I hadn’t been to college for five years and I had been a lousy student in high
school. I’d been flunking out in college. I had no idea what I could do academically. So
I went to the new school for two years and I started getting, not all A’s, but I could get some A’s and liked it, you know. My mother is still living and by this time, I had resolved the fact that I had been punishing her earlier, and even before that. I mean, she had kind of settled that I, you know, was married and I was living in Boston and she made curtains for my new apartment, and so things had smoothed out, you know, they were never easy, but they smoothed out. But then when the accident happened, she was so present for me. It was self-inflicted obviously, but you know, anyway. So I moved, when I left the hospital I moved in here actually, into this apartment on the Upper West
Side and went to the new school for two years, and then I said, “I’m going to go to a real college,” applied to Columbia University to the School of General Studies. It’s actually,
Columbia at the time was not integrated male/female, Barnard was the women’s college,
Columbia was the male college, and so they weren’t accepting women, but there was this thing called the School of General Studies, which was really for returning students, non- traditional age students, but you could get a Columbia degree, which I did and I did well, and then I got into graduate school at New York University. I graduated from Columbia
School of General Studies in 1977, and then I went into NYU’s grad school and I went
2 right into a Ph.D. program, and I chose Psychology because while I was in the hospital recuperating from the accident, I had been in the hospital and I met psychologists who I both disliked and liked. I mean, individually, you know, some of them I liked or some of them I didn’t like, or I liked to dislike them, but I also said, “I can do that and I can do that better,” and it was the beginning of my disability consciousness of, I’m disabled, none of them are except for one person who was marginal in my world there, and I know,
I understand this world. I think the other person who was disabled had short arms and I think she was the first disabled person I met who had any kind of authority. I’d never met a disabled person before who was in any kind of position of authority. I had very little interaction with disabled people in my life anyway up until then and never really thought about it, but it was, I think it was an early sense of, I’m disabled, I have an insider’s perspective on things. If I become a psychologist, I will bring that perspective to my work and I will work with, I’d work in a Rehab setting, because in my imagination at that time, I couldn’t imagine that there was any other place I could work, except in a
place that was specific to disability. So when I went back to college, I majored in Psych
as an undergraduate because that was the only thing I thought I could do and it wasn’t
anything that I’d ever thought about before. I was much more interested in the arts prior
to that, and when I first registered for college when I registered at Temple, I declared art
history as my major, although my advisor it seemed had never heard of art history and
didn’t know what it was, but that’s beside the point. So following the accident, I didn’t, I
couldn’t fathom that because, well, where would I work, you know, what could I do?
You know, I couldn’t imagine myself a wheelchair user, disabled woman, well, I couldn’t
3 work in a museum, you know, I have to work in the ghetto basically, you know, the disabled ghetto, I mean, that’s the way I thought about it, and so that’s what I chose to do.
In 1977, I entered the Ph.D. program at N.Y.U. in Counseling Psychology. First I met David, my husband, who you just met, Dave Linton, and he was in a program in media ecology. We met in a graduate class about a year after I had entered my graduate program. We started dating, sort of tentatively at first, and then got together and then I began to meet some of his friends, including Arlene, who I don’t think you’ve ever met, who was with him in the program. Then Arlene met Catherine, who was further behind them in the program and then Arlene introduced us to Catherine, so, you know, it took a few years until we all got together. I finished my Ph.D., including the year’s internship that I did in Inpatient Psychiatric Service and then finishing my dissertation, I finished in
1985.
I don’t know what my earliest childhood memory growing up in my family is, but just in the way you asked that question, I thought about my father. I do have early memories of my father. He died of lymphoma when I was eight, but he had a number of ailments and was hospitalized at various points during my childhood. He had a sister that was 16 years older than him, and he was fifty something, 52 or 53 when he died and, you know, I just remember him and, you know, I have very few memories of him, but they’re my earliest memories. We used to go to this place, a bungalow, up in the country in the summer and some of my best memories of him are from there because we would spend, you know, my parents both worked and they worked long hours and I didn’t see them as much. I was often in pre-school or in the care of a caretaker. I had a, well, I don’t know what we called her, a nanny, but I don’t think she was called a nanny. I think
4 she was called my nurse. Tilly was her name and she raised me until I was six until I
started kindergarten. I don’t remember, but I think she was there when I got home from
school. I don’t remember, I wasn’t neglected or anything, but I was taken care of. You
know, it’s funny, but I don’t have clear memories of the two of them, my parents,
together. I have memories of me and my mother, and I have memories of me and my
father. My earliest memory of my mother is again, up in the country at the bungalow,
and I remember waking up and it was a kind of a little wooden bungalow. It was pretty,
but very simple and there was light streaming in through the window. I had to have been
four or something and there were little dust particles in the light and I thought that the light was carrying the dust, and I remember her saying to me, “No, it was because the light was coming in, you could see the dust.” It was something like that, but it was just, I have a very vivid visual memory of the room and where I was sleeping. There were two single beds and I was sleeping in one and the light and the window was here and the light was coming in. I just remember that and her making me oatmeal, and also, sometimes it was cold in the morning because we were up in the mountains. It’s upstate and it’s now a suburb, you know, but at the time it was country and it’s only about 40 minutes from here. So sometimes in the morning she would make me oatmeal and take my underwear and put it in the oven and warm it up before I put it on. I was spoiled rotten. One memory I have of my father and I don’t know if this is the earliest, but I was up at their, at the warehouse on 181st Street and he at lunchtime, he would if I was there, he would
walk me up the street and he knew everybody on the street, you know, all the small
business owners and people on the street. This was my parents own business, but my
grandfather had been in the moving and warehouse business on 137th Street, right
5 diagonally across from where the Schaumburg Center is, and I spent time there also as a
child. My father’s business had been there long enough that he knew everyone and he
was outgoing and he was a very friendly man. The warehouse was on 181st Street,
between Amsterdam and Audubon, and I remember him walking up the street and we’d
go into different places and say hello and he was proud of me and introduce me around
and so forth, and we went into one place, and this had to have been, and you probably
know this history better than me, I had to have been four, five, or six. I was born in 1947,
so this had to have been around 1953. There was a man with a funny little television set
and I’d never seen television before, and it was my first memory of seeing television,
with the funny little screen and it wasn’t even in a case. It was kind of like just the tube
and my father saying, “That’s television,” you know, or something. So it had to have
been one of the earliest sets available and we didn’t have one at home, and wouldn’t for
many years. I did watch Kukla, Fran & Ollie, and I was on Kukla, Fran & Ollie. My
sister had a job at Channel 9 and I went to the Howdy Doody Show, I was in the Peanut
Gallery, I met Señor Wences and I got his autograph, I was a very big Señor Wences fan,
and I saw Kukla, Fran & Ollie. I think I went to the show too, but I watched Kukla, Fran
& Ollie all the time. I think I was not allowed to watch cartoons. My mother, as I got older, wouldn’t allow me to have comic books either. My grandfather’s store, you know, his business was on 137th Street, just west of Lenox or 7th or something. I think it was
between Lenox and 7th, you know, and I’ve gone up there many times trying to find
exactly where. I think the building was demolished. I’ve looked and, as a matter of fact,
I called my sister on the phone, you know, I was walking down the street and she said,
“No, I think that was next door and that was next door,” but I’ve never found it.
6 I think my cousin felt the city and country school would not get me into college.
It was too loosely structured, no grades, too touchy-feely, it was a free-for-all, I was
having too much fun, it couldn’t be good for me. So my resentment played out and it led to a lot of friction between me and my mother, a great deal. Well, you know, I was a very compliant kid, up until I became 12 or 13 and then I wasn’t so much, so there was a lot of friction. But I lived in New York City, I knew my way around, I started taking the subway when I was nine because we were living on 104th Street and the city and country
school was on 12th Street and when I was nine and a half or so, I started taking the subway by myself from 104th to 12th Street to get to school, 12th between 6th and 7th on the West Side. My parents started taking me to the theater when I was five or six, and I started taking dance classes when I was five, I think, ballet, and you know, as I said, my mother had left school in the sixth grade, taught herself that many things was determined that I would be schooled and cultured and sophisticated and so forth, and we went to the theater a lot when I was a kid, went to opening night at the ballet, you know, it was an important part of our lives, and I was a very sophisticated kid, you know, or at least I thought I was, and you know, took myself around New York and did things.
My maternal grandparents, my mother’s parents, who lived in the Bronx near where my mother grew up on Holland Avenue off Allerton, which I could take you there, but I can’t describe where it is, and my grandparents were religious and were involved in the local Temple and so then we went to their house for Friday night dinner and there was religious, you know, lighting candles and so forth. I remember these very well and, I mean, I don’t remember details, but I remember that that was, religion was a component of the meal, and it was not of interest to my mother and I don’t think of my father. I
7 don’t remember outside of being with my grandparents in their religious environment that
we had any, we never went to Temple, my parents weren’t members of Temples, my
grandparents were kosher and we were not, we ate everything at home, and you know,
shrimp and there were no restrictions, and for my mother, it was both a belief, but it was also a defiance of all that, so I didn’t fall too far from the tree. I went along with that,
you know, that was fine with me. I didn’t struggle with that with her or myself. I just,
it’s never been a part of my life, and you know, now more than ever. I don’t mean now,
this year, but I mean once I became an adult that it was never an issue for me. I knew my
father’s parents, but they lived in Wilmington, Delaware, so I saw them sporadically. I
think they were religious also. You know, I probably had conversations with my parents
about religion and why they were so, but I don’t really remember.
My earliest memory of growing up outside of the family would be my mother
trusting me enough to take the subway on my own. We moved, when I started city and
country we were still living on 104th Street between Riverside and West End, and that’s
where my father lived. My mother then wanted to move and we moved down to the
Village a few blocks from where I was in school and I would walk to school. As a matter
of fact, I babysat for a young boy who lived down below, who also went to the same school and I would walk him to school, and so when I was ten, I was already walking a
six-year-old or a seven-year-old or whatever he was to school. The city and country
school went just through sixth grade and I was there for, we called it the nine’s and ten’s.
We didn’t call it by grade. I was there just for what would be fourth and fifth grade and
when I started Bertron I was in the sixth grade. So I grew up pretty quickly. I was on my own a lot, you know, after school. The city is a big playground. I loved it. I loved it,
8 you know, of course I didn’t know anything better, you know, or different. I thought it was a world, you know, as any kid probably thinks their own world is the world, but I couldn’t imagine being anywhere else and looking back on it, I had a wonderful childhood. You know, I had some brushes with difficult, you know, I rode the subway and I was, there were men that exposed themselves to me and terrible things, but I never told my mother. I was nine or I was ten and men would rub up against me. I remember because that’s when I was, I didn’t take the subway very much after that once I, you know, just back and forth to school, then I was mostly on the bus, but you know, it happened fairly often. I’ve kind of brushed it off, but I know it must have settled somewhere in my psyche and, you know, fifteen years of psychoanalysis later, I can say it and spiked heels were not an option for a ten-year-old. I mean, I think I did that to kind of veneer of like, “Oh go away,” you know, I’d move and so forth, but I don’t remember how long that lasted. You know, guys hit on me on the subway, but not, you know, a bouncer in the street and stuff when I was fifteen, sixteen, seventeen, but by then I was a tough New-Yorker.
In the accident on April 22, 1971, my husband John Kelly and my best friend
Carol were killed in the accident. We were hitchhiking and got into a VW bus that was headed for the demonstration. You know, we had long hair, we looked the part, we were headed to Washington, you know, we had a sign that said, “Washington, D.C.” We were picked up I think somewhere in New Jersey and the accident was right outside of
Baltimore. As best as I can reconstruct the accident, we had stopped at a rest stop and I think the driver had been using drugs, and drove off the road and the car crashed down an embankment on the highway. The driver and everyone else in the bus, except for my
9 husband and best friend, all escaped unscathed and I ended up hospitalized. I was never
unconscious, but I was pretty out of it, you know, for some time and I had a lot to absorb
and I was on a lot of medication. Actually, they tell me, I don’t remember any of it. I
have amnesia about that part that I told them who to contact and I told them everything,
so everyone was notified based on my telling them. I was in the University of Maryland
at Baltimore hospital. I was told what happened to me and there’s, you know, people tell
me that I was told several times in stages and also several different times because I was
so out of it and I didn’t, you know, it didn’t register. I didn’t really understand it.
At some point, I was told that I have permanent loss of the use of my legs and
then I had treatments from April 1971, until January 1972, between hospital and rehab
and that sort of thing, but something very significant happened in rehab. I was at N.Y.U.
hospital, New York University hospital, and then I was transferred to their rehab facility,
which it was called the Rusk Institute. The N.Y.U. hospital was on the East Side on 30th and 1st, near the FDR, and I was transferred to the rehab hospital and where I was going
to be for seven months or so at Rusk Institute, a famous rehab facility, and where I started
physical therapy and first started using a wheelchair and so forth, but something very
significant happened. I used a manual wheelchair, but I use a power wheelchair mostly
now, although I have a manual chair in the other room. I use a power chair mostly now,
and this was 36-7 years ago, 37 years ago, I used a manual chair for most of that time. I had to develop strength in my arms, you know, which I didn’t have, and, you know, but
what was significant about rehab, in addition to, you know, kind of learning all these new
skills and, you know, kind of quote unquote adjusting, which is always a very complex
word reduced to a single word, I started to meet other disabled people. They were my
10 fellow patients, you know, at the time, but I’d never met disabled people before, so in
seeing them and getting to know them and watching them, it was a way to learn about my
situation and we were struggling, obviously, a lot of people were in a lot of physical pain, emotional turmoil, freaked out, fucked up, messed up, scared shitless about everything.
These were people mostly who had had very similar kinds of injuries to mine, plus there were people in the rehab center who were probably three times our age or four times our age who’d had strokes and so there was this bimodal thing of very, very young people, mostly in our teens, twenties, who had had spinal cord injuries and then people in their
70s, 80s, 90s, who’d had strokes. We banded together and we hung on to each other, and had a lot of fun in the midst of terrible things that were happening for each of us and we relied on each other, and when I left rehab and kind of fell back into my old friends, and many of my friends were, stuck with me and were very wonderful and supportive and terrific, they were no disabled people and I lost contact with other crips. We didn’t use the term crips at the time, but with other disabled people that term has developed over time, and it took me many years to come back to that. I moved in and out of those circles, but awkwardly and never kind of established. I had a couple of individual friends, but never established a community, the way I had in rehab for many, many years, and then when I did and it happened slowly, but a pivotal thing happened in 1990, which
I can get back to you on, but once I refound them, the disabled community, it changed my life so profoundly and so wonderfully.
As I said, it happened in different stages and there were different moments. A couple of conferences that I went to where I met some disabled people and started to get, in the 1980s, they were conferences on sex and disability, and actually, when I came out
11 of rehab that was the one thing that I knew I wanted to do and one of the reasons I went
into psychology is human sexuality. The thing that was most absent in our rehab was
attention to that and I saw that and I’m very proud of that type. It is an epiphany and they
didn’t want to deal with it, but when we gathered together, you know, the disabled people that I met there, the other patients, we’d go up on the roof and that’s what we would talk about. You know, we’d talk about lots of things, but that’s one of the things we talked about and we said, “What, you know, we’ve got to, this is critical,” and, I mean I was 23, you know, and so that’s what I started focusing on and thinking about. So in the 1980’s, this was, you know, I went back to college, I was interested in that, and I started reading
anything I could get my hands on, and there wasn’t much on sex and disability, but I
learned. I went into a training program on sex education and I was the only disabled person there and I was the only person interested in disability stuff. I met some people who are to this day very good friends and started to learn about human sexuality in very pragmatic and very philosophical, theoretical terms, you know, so all sorts of things and
biological terms, and became, you know, started to adopt a very professional persona
around sex and disability, and even as an undergraduate I was brought in to do talks to
classes and things, classes at other schools, you know, people I met and, you know, I taught a class at Hofstra, at Marymount, and different places, you know, they’d pay me fifteen dollars or twenty dollars or fifty dollars and I would go and do this. The training program was in New York City and was part of an organization called Community Sex
Information. It was a non-profit organization and it was on human sexuality and we were trained eventually to become counselors, phone counselors, we had a phone in, but it was very professionally done. So I started moving in those woods and then I went to a couple
12 of sex and disability conferences, one here, but two or three in California. I went to
California for the summer of 1975, out to Berkeley, and that was a pivotal moment. That
was when I really started to meet other disabled people. I started learning about Roberts v. University of California, and Ed Roberts is one of the icons, and I have been in the same room as Ed, but I never really met him. I touched his wheelchair, which is now at the Smithsonian. When I saw his wheelchair in the storage room at the Smithsonian, I just started crying. It was so powerful and I’ve written an article about it. I’ll show it to you. I’ll give it to you sometime. I have it, about seeing his chair and what it meant to me, and so forth, and describing it.
So anyway, I went out to Berkeley in 1975, and started to meet other disabled people and really got into, you know, started to realize there’s a world out there that I didn’t know, but I kept moving in and out of it because it was scary to me, to be part of the disability world because I thought I would loose my footing in the non-disabled world, and I didn’t understand that as a desirable place. Somehow going into the disability community, I thought I was shutting my back on, the door would close behind me and the door would lock and I wouldn’t be able to move fluidly between the two and I didn’t understand that I could and it was scary to me, and I didn’t, you know, because there was so much discrimination against disabled people, if I aligned with them, I would not have the privileges of ablebodiedness, which, you know, it, I mean, I never had the privileges of ablebodiedness once I was disabled, but I had the privileges of being able to live in that world by passing or by, you know, I mean not completely passing, obviously no one would mistake me for non-disabled, but by being able to function in that culture.
It was a general fear and I recognized the fear, but I could not have articulated the fear,
13 and I wouldn’t, not the way I can now, not the way I can now and not only could I not
have done it the way I can now, I would have been scared to articulate it because it would have, now I understand it as part of what anyone who can pass struggles with. Anyone who can move in those worlds struggles with and I’ve spoken to so many disabled people and almost every one of them has the similar kind of narrative, whether they grew up with disability or didn’t, like this was the one desirable world, you don’t want to go in a
bad world for Christ’s sake, you know, I mean it, it is a struggle and now, you know, it’s,
the disabled people are ______and love and long to be with are the best people in
the universe.
Anywho, so, you know, 1975, I went to Berkeley. I went in 1975, 1977, 1978, I
think it was, I went to a couple of these sex and disability conferences. I started to meet people. I started to get excited about ideas that were just little germs in my brain, but then I saw other people had similar ideas and we talked together. We formed things and so forth, and then into the 1980s, I moved, you know, I moved more fluidly in and out of
these communities, but I would always move out of them, you know, I’d move in, I’d
move out, I’d move in, I’d move out. I didn’t find home, you know, I never found it. In
1990, I saw an ad in The Chronicle, an ______ad for a conference on something
called disability studies and I thought, disability studies, what’s that, and that was 1990. I
didn’t know what it was. There was a conference two weeks away in Oakland and in a
hotel that just eight months before that or so, I’d gone to a diversity conference that I’d
also seen in The Chronicle, a ______ad, and petitioned my department to let
me go and I presented a paper on disability as an aspect of diversity. No one else talked
about disability as an aspect of diversity in that diversity conference and I think four
14 people attended my paper. So, but then I went back to that very same hotel several
months later, I’ve lost track, but it was very close proximity when I came in the hotel and
there were crips everywhere and all we were talking about was disability, I was so
excited. I just, and, but I was an outsider because people knew each other and I didn’t
know anybody. I didn’t even know what the conference, I didn’t know what disability
studies was and they seemed anyway all knew, so that was my first. This was the Society
for Disability Studies Conference, a new fledging organization that had been formed in
the late 80’s and this was 1990. This was their annual conference, second or third, and
they’re still around. The Society for Disability Studies and that acronym would be SDS, and the acronym was by coincidence. When I saw the acronym, I thought I’m home, but
I felt at home instantly, and I just was so excited.
I had flown prior to 1975, and it was always a huge hassle, a huge hassle that has changed considerably. I mean, they took me, they sort of, they brought me back, but it was a struggle with resentment all the way. It was, you know, like, “Oh, what are we supposed to do with her,” you know, like, “No, we don’t have that,” and finding the little
chair that could get me on board. In every airport I’ve ever been, you know, ever went
to, there was one wheelchair accessible bathroom in the whole airport and you had to find
it and you had to find the person with the key because it was locked, and it was always
dirty because nobody every cleaned it because it was locked, you know, that’s changed, but once I got out to California in 1975, it was so accessible at Berkeley. There were curb cuts on every corner. I’d never seen, there were accessible bathrooms in lots of restaurants. I’d never seen anything like that and that was my first inkling of disability in social construction because, well, I know what New York was like and other places I’ve
15 been and I saw what California was like and in some, I’d never heard the term social
construction and I didn’t use it in 1975, but I ______, “Oh, it doesn’t have to be
this way. It’s all possible and what does it take? Will, you know, will and vision,” and
once I got back to New York, it shifted my focus from like, “Oh God, I can’t get in
there,” to “What the fuck is the matter with them,” you know, it, you know, not, I mean,
at least that was my outward attitude, you know. It shifted the focus from me not being
able to walk or get in places to they’re at fault. Why aren’t they doing the right thing? In
1975, I wasn’t aware of the 1968 Architectural Barriers Act. I wasn’t aware much of
anything and I wasn’t even aware of 504, which was an Act in 1973. I really didn’t
know. That summer I started, I worked my first disability rights meeting in Berkeley at
somebody’s home, you know, I began, I went to, I visited the CIL out there, the Center
for Independent Living, which Ed Roberts and Judy Human had founded. I didn’t,
disability rights, what is that? I didn’t even know, you know, it was a major, major
epiphany, and again, you know, some of this is going to be for me, you know,
______and there’s so many people who can account for very
similar accounts of epiphany, so you’ll have plenty of me for your film.
Anyway, let’s move ahead to 1990, to my first disability studies conference, the
Society for Disabilities Conference, which I have attended every year since 1990, so
that’s, I just last weekend went to my, I guess 18th here in New York City, and I
discovered this academic discipline, this activist vision for how to reframe disability as a
social and political and cultural constra in ways that I couldn’t even imagine before I had been. So, you know, I had the like pieces of the puzzle, but then at that conference it all started to come together for me. So that was 1990, I went every year and then started to
16 become very active in the organization, started presenting papers, started articulating my
own ideas, and then in 1993, went to the first disability humanities conference at the
University of Puerto Rico in Mayaguez, which started to articulate. It had been
predominately social sciences up until then, so I articulated the humanities branch of the
field. I got, I started to get the idea for my first book, which was about disability studies,
claiming disability, knowledge and identity, and that post-______part is very
important. It’s about claiming disability, about claiming that instead of medicalized
fields having the say in defining what disability is, disabled people were claiming it for
ourselves and defining it for ourselves; and then knowledge, both the knowledge base in
disability, what constitutes the knowledge base and how it should be defined and
articulated; and identity, claiming disability as an identity is a significant thing for
disabled people. To say I’m a disabled woman, what does that mean? And I say disabled
people, disabled woman, I don’t, you know, some people say people first language,
people with disabilities. I’m putting it, it’s, for me, I’m putting it out there. It’s, for me,
it’s a critical thing. So I began, eventually, started writing a book, took about a year’s leave of absence to write the book, got a fellowship, the book came out and I started then
traveling, and I was, by the way, teaching Psychology at Hunter College by then. I taught
at the City University from 1985 to 1998. CUNY is City University of New York, the
whole piece of it. I taught first at Barook College for three years and then moved to
Hunter, which is part of CUNY. I wrote my first book and then started traveling around to college campuses doing lectures on disability studies as a field of inquiry and disability studies as an aspect of diversity, and trying to position disability and disability perspectives in diversity agendas of most colleges, that most, I’m sorry, that most
17 colleges and universities have to better or worse degrees, you know. Disability studies
has grown enormously. You know, if we had a camera, I’d go in and show you my
bookshelf right now, which in 1993-94 when I was starting to write claiming disability,
my disability studies collection was, you know, like this big and now I’ve got three big
shelves overflowing with books and I’ve even stopped acquiring academic books because
I’ve kind of moved beyond that. Not beyond it, please don’t say that. I have moved in
different directions.
SDS, right now, it’s headquarters moves around because it’s hosted by different
institutions. It’s right now hosted by CUNY, but that’s the administrative part of the
organization. The organization is international and national. It’s membership spans
many countries, but the conference moves from place to place. Last year, it was in
Seattle. This year, it was in New York. I don’t know where it’s going to be next year.
It’s been in Bethesda, it’s been in Chicago, it’s been in St. Louis; it’s been lots of places.
There are people from those countries who attend SDS every year. There are disability
studies programs in a number of places in Japan, in Australia, New Zealand, England,
France, but there are courses across the United States many, many colleges and
universities have them. I’m brought in. I travel a lot. I’ve been doing less of it since I
started working at ______, but I traveled a lot, a lot in Canada, disability
studies is very strong in Canada. I traveled to colleges and universities to do lectures.
We were just talking before about airports, you know. I travel all the time now.
I’m an expected part of the flying public. I can get on a bus in New York. I can’t get in the subways, I can’t handle a taxi, but I can get on the bus. My presence in the public domain is a much more expected and accepted thing in the social landscape. All New
18 York City buses have lifts, and that isn’t of course universally true in every city, but all
the New York City buses do. It was a hard won struggle. People had to lay down on
highways and, you know, it’s just, it may seem like a silly thing, but it’s something
important. I used to in the 70s, let’s say, go down the street and avoid eye contact with people because if I made eye contact with people or said hello, people would say, “Oh, are you ok? Can I help you?.” It’s not unique and it’s absolutely patronizing and
intrusive and as they’re reducing me to nothing but a vehicle that needs, you know, a
person that needs help. Now, for me, and I don’t think, who knows what the hell goes on
for everybody and it’s clear for Destiny it’s still very operative, but now, I’ll be waiting
on a corner to cross the street and instead of somebody rushing up and saying, “Oh, can I
help you,” and starting to push my chair, but instead of that, people come up and say,
“Excuse me, do you know where this address is?,” and for me, it’s that I’m not reduced to someone who needs help. I am there, I look like I know where I’m going, you know, and indeed, there is no Leon Dash, there is no one in New York City who knows where everything is better than me, you understand that, and so those strangers who do approach me are very perspicacious, you know, they see in me not just a figure in a wheelchair who needs help, but someone knowledgeable and informative. But anyway, that kind of transformation is critical for my life and experience, and now, I don’t want to say everything is groovy because I still have experiences just like you described that Destiny has with people wanting to help me or putting me ahead in line, which now these days I say, “All right, I’ll take it, fine,” but there are a number of things that are just much more ordinary about being disabled in my day to day life that make the experience profoundly different for me. I go into a restaurant and instead of, you know, this doesn’t happen all
19 the time, in fact, many times it doesn’t happen, and it happens very differently. The
maitre’d says, “You know, we’ve got this table, but I think, you know, you’d probably
enjoy that table more. Can you wait a couple of minutes or would you like this table.
How can we help you?” Now, many times I come into a restaurant and they go, “Oh, shit,” you know, but that was always my experience in the past. It’s not always my
experience now, so it’s, there’s been, you know, I can find accessible bathrooms, at least
in the chain stores, you know. I’m going to the theater tonight and I have to think where
near the theater will I be able to go to the bathroom. It’s one of the Broadway theaters. I
don’t remember which one, but some of the Broadway theaters now have accessible
bathrooms of course. I don’t know which one, so therefore I have to find another one.
It’s still a massive struggle, but at least there are some places now. You know, the ADA has been enacted. There is disability studies. Graduate students in, you know, I’ll meet a graduate student at some party whose majoring in English, you know, whose field is
English and I’ll say I work in disability studies. They know what it is. They’ve read a couple of books in the field if their work is in any way, you know, whatever. They know.
They’ve met people in disability studies on campus. You know, it doesn’t happen all the time, but it’s not foreign, and I feel that authority that if they don’t know it, they’re, you
know, they’re doing a dissertation on something about the body and they’ve never heard
of disability studies, instead of my feeling defensive about, “Oh, disability studies, yes,
well, it’s very important,” which in the 90s was the way I approached it, now it’s like
where have you been and you think that’s going to be a strong dissertation, you know. It
seems silly to me now that they don’t know about it. So point of that is, it’s amazingly
important to my life, but the ADA has been enacted, disability’s been codified as a factor
20 in discriminatory policy as a social justice is a human rights issue. Yet, there is more
unemployment now than there was before the ADA for people with disabilities and the figure is still hovering around 70% and, you know, huge numbers of disabled people live in poverty. Huge numbers, we’re all without health care unless we’re, you know, employed. So there have been massive changes, but massive changes for, you know, I can trot out to get them and the point is how can I pay for a ticket, so that means
something to me. I live in a place where I can get on a bus. I have the means to go into a
restaurant, so it all makes, you know, it all looks like progress when you don’t factor in
the enormous class of social justice issues that come along with disability and privilege.
Some disabled people over others, and in every minoritized group, and I just made up
that word, or in any other discriminated group, we see, you know, the talented ______
or the passing gay people, or the passable gay people, you know, we see that strata in
stratosphere for every group and it’s absolutely true for disabled people, and then that
presents a new struggle for me, you know, to expand the accessibility and employment
and quality health care to all, but also my other personal struggle is that I can calculize on
my access to things and other disabled people can’t, so it’s a personal moral struggle to
take advantage of the things that are available to me as a disabled person, but are not
available to other disabled people. For example, health care is a big issue, you know, I
mean I see somebody going down the street in an old jalopy of a wheelchair and I feel
embarrassed because I have this souped up, you know, this Mercedes Benz here because I
have health care. Education, you know, the privilege that I, I mean, I have a Ph.D., you
know, and I have the means to pursue that, that I have social and cultural fluency in lots
of different places that come maybe from growing up non-disabled, you know, and
21 growing up in relative privilege that a lot of people don’t have. You know, when some of
these are class issues that transcend disability, some of these are disability, specific to
disability, and the class stratification that’s emphasized on disability, more problematic
because of disability. Clearly that is the case, you know, when you have 70%
unemployment in the disability community, and even if those people employed, many employed in sheltered workshops and, you know, marginal work, and if they give that up, if they give up Medicaid, lose other benefits, you know, I mean it’s just, there’s so many ways that it’s because they’re right on the edge, people living very precarious existences.
So, you know, there’s so much, I don’t know; those are things that come to mind.
22