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Disability culture, remembering the signing of the Americans with Disabilities Act [ADA], not minimizing the difficulties
of having a disability
Jacobson
What that brings up is another question about the term, "disability culture."
McQuade
Disability--?
Jacobson
Culture.
McQuade
Culture.
Jacobson
Where are you on that?
McQuade
I don't think there's a disability culture. I think there's a set of shared experiences. That when we all talk together, we
all have our war stories. We've all experienced a certain amount of rejection. Some of us have experienced some self-rejection
to a greater or lesser extent, depending upon the individual. But it's not a culture. It's not like we sing the same songs;
we like the same things. We both use wheelchairs, and therefore both of us are going to love wheelchair square dancing. You
know? I don't find that. In my experience, I have very dear friends who have disabilities, but what makes them my friends
is there's something in common that we had. We went to school together. We laughed at the same jokes. We had some shared experiences,
or we like some of the same things.
It's not different than what makes you a friend with a nondisabled person, but that shared experience, there's a bond that
comes from that. It's like women who have given birth naturally. They have a shared experience. People who have had trauma,
emotional trauma of some kind, you know, people who went through the Holocaust. People like us. We have a shared experience
of not only disability, but in a movement, and when we get together we have old times to talk about. We have things to laugh
about. We have things to maybe cry about, because some of our friends that were there with us at the beginning of the movement
didn't make it to see ADA pass. Sometimes I think of those people and I get very--as I'm getting now--I get teary-eyed. I
guess for myself, I didn't expect ADA to come about. You're getting emotional too! We're both blubbering. [laughter]
I didn't expect ADA to come in my lifetime. I figured we'd be the generation that fought the civil rights that somebody else
would benefit from. So when ADA passed--a friend of mine, Judy Goldberg, we both went to NYU together. We've been friends
for almost thirty years. We both were at the signing of the ADA, and we went to this hotel together. Denise Figueroa was there.
I'm telling you, I was saying to them this was more of an emotional moment than getting married. It was such a kick. It was
such a wonderful, wonderful day. It's hard to believe how you felt. I didn't feel like crying. I felt like singing, dancing.
In some ways it was just such an unbelievable--It was like surreal in some ways, because you couldn't believe it had actually
passed in basically two years time. What am I saying? '89, '90, it passed in '90. We couldn't believe it. I couldn't believe
it. It was such a thrill, such a kick to see how far we had come in approximately thirty years. I started in the seventies,
like you, and that was just an unbelievably happy, happy moment. You knew it was going to be an uphill struggle to implement
it, which it
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is. We've come--as the cigarette commercial goes, "We came a long way, baby," but there's still a lot of things in terms of
implementing it.
Jacobson
Yes.
McQuade
I know there's disabled people working, teaching disability culture, but it's not a culture to me. I understand in the deaf
community how that can be a culture, partially, because you have a common language. I don't know. My signing stinks, so I
haven't communicated enough sign to know how many things are unique in the cultural sense. Certainly a language is something
that binds people together, and that is definitely a part of culture. But I don't know if in deaf circles it's all that different,
other than how the communication takes place, from everyone else. I haven't been in deaf circles that much. I had professors
when I was studying sign language who are deaf. I know people in the movement who are deaf. I know that they don' t see themselves
as disabled.
One time, someone came to our center for assistance, and we were going over some things, and my sign was enough to know that
she said she would pray for me, and I said back to her in sign that I would pray for her, too. This went over her head. I
don't think it translated well, but I didn't feel angry. It was wasn't said nastily. It was said sort of ironically, like,
"Though you don't see it that way. We really both have disabilities." For deaf people that I've encountered, it's like there's
a great deal of pride in being deaf parents of deaf children. Deaf deaf is what they call it, at least here in the east coast.
To me, I wouldn't feel proud if I had a child who had a disability. I wouldn't be suicidal, but I'm sure for yourself too,
everybody wants a kid that's not going to have problems if they don't have to.
Jacobson
Except that there are disabled people I know who adopt--
McQuade
Right, I think that's fine. You can identify. You can really be there and know from personal experience some of the things
they're going to encounter. I guess for me, whenever I was in a hospital when I was in as an adult and there were young disabled
kids, I felt such sadness. I'd have to restrain myself from crying, because they're happy little kids, like any other kid,
and you think to yourself, "There's going to be some tough times for you, kiddie." Because you know, until people get to know
you, they're first reaction is, "Oh my God, I'd kill myself if I was in a wheelchair." People will say to me sometimes, "You
know, I admire you so much. I don't know how you do it." I drive a car. There's a hand control. I learned how to drive. I
don' t get the medal of honor for doing this. I use a wheelchair. It's not like--
As I was saying to you last night, I don't want to minimize some of the difficulties, because there are things that I can't
do for myself at home, and I need help with. Like the higher parts of the closet. My apartment is not technically an accessible
apartment. I can manage in it. But when I was living on my own, I had things on lower shelves. This is not designed for a
person using a wheelchair. My wheelchair--this one doesn't actually fit into the bathroom, I have to transfer into a decrepit
old thing that I have that's a little narrower. The thing is, it's like on my own, I had to put things in different places.
When Larry and I started living together, he could put things up because he could take it down. But if I was on my own, things
would be differently organized in the house, because it would be organized just to my particular needs.
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There are frustrating things. This is also as we were talking about as you grow older and some of your functioning ceases
to function as well. There's things that I used to be able to, like if I had to--I used to be able to crawl very easily. I
can't do it like that. You should see me, I'm like a shaky old horse. You see that happening to you. Everyone loses functioning
to a certain extent as they grow older, but to us you're starting out with diminished functioning. To us, it means more. If I injure my arms, I'm a basket case, because it's
like I know I'm so dependent on using my arms for everything, this could totally change the way I live my life, totally change
it. I think, granted the person who has full functioning and loses something feels that way too, but I'm just saying it's
a more frightening thing.
If I fall, I'm afraid. I took a fall. I had my wheel come off, the front wheel. I got off the bus, I went down a curb cut
and I felt myself tipping, and I didn't know what the heck happened. So I had to move, I couldn't just stand there. I was
like four blocks away from the office. I'm wheeling along, and I see somebody--I wheeled up this curb cut, and I see somebody
that has "Department of Buses" on his jacket. So I said, "Excuse me, I work for the Department of Buses, could you help me?
Could you look to see what's wrong with this wheel?" He said, "It seems to be coming--it snapped." I never had this happen
before, but it was like this piece that holds this to there--I'm so technical, "this piece"--[points to her wheelchair]
Jacobson
The front caster.
McQuade
It wasn't exactly the caster, it's the piece that holds the caster to the wheel, this piece here. So at any rate, it was coming
off. I said, "Do you mind walking me to my office?" We take two steps. The wheel comes off. I fall. I go right out of the
chair. Luckily, I must have been fairly relaxed because I didn't expect to go, I didn't break anything. My shoulder was hurting
a little bit, whatever I did. This poor man--I was like a chimp holding onto its mother, because he was a very big man. When
I talked to him, I had to like shout up. I'm hanging onto his jacket. I'm like a chimp holding onto the fur of its mother.
He picks me up, and this other man had picked up my chair, and then we very, very slowly go to the office. That kind of stuff
is really frightening.
What did I do? Earlier the year before, in a transfer, I injured my ligament. What the hell was it? I tore a bicep, so my
arm--my doctor said it's like a baseball player, you injure your arms a lot. That sort of stuff is a little frightening and
all.
I know I'm sort of digressing, but I don't see it as a culture. I really see it's like any group of people who have a common
shared experience. I'm talking now about bad experiences, but it could be a good experience. People who went to college together;
they have something that connects them. People who go through--they climb Mount Everest together; they have a shared bonding.
For me at least, I don't see that makes us a culture. A shared experience, yes. I definitely think when you sit down and talk,
you find there are emotions, there are connections that--it's almost like you don't have to use that many words, and people
feel it.
It's like that in the same way I talk to my friend, Judy Goldberg. She has osteogenesis imperfecta, so she walks with a cane.
In snow, if she falls, her bones break, so the two of us are like really sisters in the snow. We always call each other, and
we commiserate with each other. But the feeling, you don't have to say a lot and we just know, yes, I
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know how you feel. Sometimes the shared experience when you're trying to do something. Like the winter--I don't know if this
affects you--but in really, really bad cold, I lose some of the functioning in my hands, and I can't turn things.
Jacobson
I get a lot of pain and get very stiff.
McQuade
Stiff, yes, yes. I know most women our age have some arthritis on their spines, disabled or not disabled.
Jacobson
[Right here?]
McQuade
Yes. You know, I think that. I hope I answered that thoroughly. That's the other thing too. You made me think of something.
I was talking with Denise Figueroa, and I think maybe this perhaps makes some difference in your perspective on things. Denise
Figueroa was an infant when she became disabled. Judy Heumann was an infant when she became disabled. So there's no recollection
of being anything but having a disability. When I was talking with Denise, she didn't have this sense of loss that I've had
at different times of remembering back.
Jacobson
When you were--
McQuade
She had polio also.
Jacobson
When you were--
McQuade
Three and a half when I became disabled.
Jacobson
What year?
McQuade
I became disabled in '51. I remember being totally paralyzed, unable to move anything but my head. Before that--my mother
especially would tell the story--I ran a lot. I liked to run. I would run away from my mother. I would run away from my grandmother.
I just liked to run. My mother said other women sat in the park knitting, and she was jumping fences because I would bolt,
just take off and run. I remember running. I miss that freedom of movement.
Jacobson
Yes.
McQuade
To me, I miss that. I don't feel tragic about it anymore. We were talking about being teenagers. When I was becoming a teenager,
I think I had a couple of really bad months, because I remember crying buckets full of tears. "Why couldn't I walk?" Sort
of like I was mad at God, I was mad at everybody. I snapped out of it, but it was like I couldn't dance. I probably would
have two left feet. I don't think I have a lot of coordination, but I wanted to be able to dance. There was one fashion that
was out when I was thirteen or fourteen. It was called the Queen Ann heel; it was a little tiny heel. Of course, I'm wearing
the horrible old shoes that you--orthopedic shoes. They really were like saddle shoes, but they were with laces. I couldn't
wear really nice shoes, and you had the braces, and it just was upsetting.
Jacobson
Ugly.
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McQuade
It was ugly, and it was upsetting, but I somehow got over that, "My life is tragic."