By Mary Johnson
"Nondisabled people always think about our lives as being tragic: how can we go on? Why aren't we tearing our hair out? Why aren't we crying all the time? Why aren't we all calling Kevorkian?
Nadina LaSpina and Daniel Robert are talking about pride and identity as disabled people. This conversation has come about because of an article last summer in the New York Times about disability culture - an article that many activists like LaSpina and Robert feel missed the point pretty much altogether. Both are active in New York's Disabled In Action.
"People think we have exaggerated this positive image of being disabled," says LaSpina. "We are saying that being disabled can be a positive experience," she continues. "But we are not saying that it's easy.
The two said they were expecting objections to what they'd said in the paper to come from nondisabled people. "Instead, the main objections came from disabled people," says LaSpina. People said, 'You may like disability, but I don't.' 'You don't speak for me. I hate physical limitation. I hate losing function, I hate pain!' Some of our own DIA members told us, 'I'll fight for access, but don't expect me to like my disability.' "
Both LaSpina and Robert know that they're both "losing more function every day, living with pain."
"And we don't like that either," she adds. "We're not masochists. We would gladly get rid of the pain."
She continues, "We just don't want to be 'nondisabled.' "
"We've been saying for years that the problem is not the disability, but the way society treats us. We've said that if we lived in a world that was completely accessible and had all the supports necessary, then having a disability would not matter.
"But as psychologist Carol Gill reminds us, says LaSpina, even in such a world some of us "would still experience pain, and would still be slower" than we like.
"We have been saying to ourselves, 'the disability doesn't matter; it's the discrimination - how we're treated, the lack of access, the attitudes' . . . So when we feel any pain, we tell ourselves, 'Yes, I have some pain, but it doesn't bother me; I have to fight the discrimination.'
"But the pain does matter. Denying that, and saying everything is wonderful, is not the way to do it," she continues. "Maybe we needed to do that for awhile in the movement, among ourselves. But we may have turned people away too, by doing that."
"People with progressive disabilities really don't like getting weaker. They're afraid. And in a way we have made people afraid to admit those feelings."
By not providing a time for that kind of discussion, activists, says Robert, may unwittingly shut out people who would gradually learn activism if they were welcomed and allowed to voice their fears about their changing bodies. Robert, who himself has a progressive disability, says, "We haven't encouraged that kind of discussion as appropriate at our Disabled in Action meetings. We talk about discrimination, about access issues." Maybe, he suggests, that's why people tend to avoid activist groups and people seek out "MS support groups," says Robert, who himself has MS.
Pain is part of her disability, says LaSpina; it comes with the territory. She says she's happy with herself "as person with a disability - with whatever pain there is. That's part of it."
It's like being Italian, she goes on. "I'm proud of being Italian. There are things I'm ashamed of, like the existence of the Mafia - but these things do not stop me from embracing my Italian-ness. I love being a woman, but I hate going through menopause. But I wouldn't want a sex-change operation just because of menopause. Certainly the pain and physical limitations of disability are not wonderful, yet that identity is who I am. And I am proud of it."
"I feel the same way," says Robert. "Even though I'm scared of the progress of my disability."
"I've never lived without my disability," LaSpina points out. She contracted polio while still an infant.
Robert got multiple sclerosis as an adult. "As a nondisabled person," he says, "I thought I was really putting up with a lot" - just with his general life hassles as a prop man in the New York City film industry. "I had no idea - no idea at all," he says now. "But there's no percentage in comparing now to then," he adds.
LaSpina, born in Italy, caught the polio virus just as she was starting to walk. All her childhood, she remembers her mother saying, "You're going to America and you're going to walk!" The family did move to the U.S. when Nadina was 13 - "and so in America I believed I had this obligation to walk." LaSpina says she endured 17 surgeries, all designed to get her to walk; she worked hard to walk on crutches, falling repeatedly, breaking bones over and over. "I felt I had to walk - for my parents."
The breaks were so numerous that finally her legs were amputated below the knees. Fitted with prostheses, she tried walking with them, too.
"Standing up and writing on the blackboard was part of my identity as a professor" teaching Italian at New York University. She couldn't imagine teaching without standing up, she says. "I got used to holding onto crutches and writing on a blackboard. I couldn't imagine doing it in a wheelchair."
In 1992 she met Daniel Robert and re-evaluated her thinking.
Robert was coordinating New York City's first disability pride march. It created a "high" in a lot of disabled people in New York, LaSpina and Robert included.
"Here I was, organizing the march. I'd just met Nadina. I was in sort of a pink cloud."
Robert recalls his euphoria. "I even remember thinking, 'Isn't it great I got MS!' I was imagining a rainbow of 'us' - and how beautiful we all were. When we had the march all this was just reinforced. It was pride, disability pride - I bought it wholesale. I hadn't paid any dues. I just wanted to be part of this beautiful mass, this group of people who, when we were together, could blow peoples' minds."
"It's taken me a long time to integrate the progressiveness of my disability," he says. In other words, reality set in. "It was a high for awhile, though," he adds.
"I see that a lot with people with progressive disabilities," LaSpina says. "They'll come in and embrace the community - then they'll pull back and say, 'I don't want the pain and the limitation.'
"And the stigma and the discrimination, of course," she adds.
Constructing this identity," LaSpina says, "creating who I am, is a slow and painful process. It's always, I'm sure, a slow process - and when it isn't I'm suspicious." She remembers thinking Robert was surely faking when he thought it was all so wonderful. But she adds, about her own coming-to-pride: "It was a big relief when I went to the wheelchair."
"Disability pride cannot happen in isolation," LaSpina continues. "We see this. To feel disability pride, one must be a part of the disability community."'
"I see pride most strongly when I can be proud of others in the community," Robert adds.
If the pride didn't emanate from pride in the disability community, if it's not pride in the "us" of disabled people, both Robert and LaSpina stress, "it would be just pride for accomplishing something 'in spite of' - or 'overcoming' disability.
"That's playing by the rules of the nondisabled majority," LaSpina says.
"When we talk about disability pride," LaSpina explains, "we are always talking about accomplishing it as a movement, with each other."
"Take Chris Reeve," says Robert. "If he has disabled friends, I haven't seen 'em. We would welcome Reeve if he came to us, because he's definitely one of us," he continues. But Reeve has not come - not yet.
"If I see someone in the street who's disabled, I get a warm feeling - I want to go introduce myself to that person," says Robert.
"We always say 'hello,'" LaSpina chimes in.
"And we're always ready if someone wants to talk," adds Robert.
A girl stopped LaSpina one day on the street to ask about her sporty wheelchair. LaSpina was happy to stop and talk - she says she doesn't know whether it's her "frustrated maternal instincts or because I'm a teacher" - but she finds herself wanting to reach out to disabled twenty-somethings.
"They don't know what it took to get where we are today," she says. "We need to teach about our movement, about what's been done in the last 30 years, about how precious it is what we have gained."
"Because," she adds, "our gains are fragile. They could very easily be taken away."
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