As a polio survivor and former clinical psychologist at a rehab hospital, Carol Gill has helped a lot of people adjust to disability. One day, that wasn’t enough for her.

“I realized that my clinical skills and activities were limited in changing the status quo for people with disabilities,” says Gill, 49. “I could work with people on an individual basis, but I didn’t feel I was doing very much to improve the status of people with disabilities generally.”

Gill decided to expand her influence through disability research. “Important questions about everyday life with a disability weren’t being adequately researched from a disability perspective,” she says. Studies often asked “experts” about what disabled people needed, she says, “but you never saw many–if any–in which people with disabilities were asked.”

So for the last eight years, Gill has asked. She co-founded The Chicago Center for Disability Research and became an assistant professor at the University of Illinois at Chicago, where she is now in charge of disability studies at the master’s and Ph.D. levels. She has researched disability identity, self-esteem, women’s health, parenting and many other topics.

But Gill doesn’t live in an ivory tower. An outspoken advocate of disability culture, she networks with artists, college students, disability activists and others to build a community based on disability pride.

In this interview with Jean Dobbs, Gill outlines how oppressive ideals–external and internal–affect women with disabilities, and what they can do to build a positive self-image.

JD: A lot of people cringe at the idea of a “disability pride” movement, but you seem to see it as a starting point for building a sense of worth independent of mainstream cultural ideals.

CG: Every minority has had a vanguard that accepted the idea of pride long before the other members of the group were able to purge themselves of their internalized oppression and devaluation of their own status. African Americans, gay and lesbian people, and nondisabled women have all followed this model.
I remember when I was a student and the women’s movement came upon us. All of the women I knew were pretty much resistant to the ideas. And now, in many ways, they’re considered a matter of course: that women are equal to men, that gender is constructed by society for the most part, that there’s no biological basis for most of the different roles that women are consigned to in our culture. Those were pretty radical ideas that I dare say the majority of women once rejected and certainly resisted. But things have changed a great deal since then, and I think it will be that sort of gradual process that will happen for people with disabilities.

JD: Are the value judgments that are put on women with disabilities changing? How?

CG: Cultural aesthetics go through cycles. When I was younger, we went through the counterculture stage and the stage of minority aesthetics after the civil rights movement began. We heard that black is beautiful and that women should not be enslaved by narrow cultural definitions of beauty. Then there was an emphasis on a broader physical aesthetic. Now I think we’ve gotten real narrow again.

For women with disabilities, there may be a little bit more tolerance for difference, but only up to a certain threshold. A lot of times when we look at Ellen Stohl doing a Playboy layout or Share a Smile Becky or more people with disabilities in commercials, we think, “Ah! Society’s going to see this and become much more open.” I think that the most that will happen is that society will say, “If a woman is beautiful by conventional standards and has a disability that doesn’t interfere with that, then we will see her as beautiful. As long as we look like an actress who’s playing somebody disabled, then we are going to get a chance to be acceptable.

We shouldn’t get too excited about it, though, because I think society is beginning to divide us into the acceptable and the unacceptable disabled. And that is a very ominous trend. I think the unacceptable disabled woman is the one who can no longer take care of people and who is going to fall short of that traditional standard of beauty. And who, in general, is going to be expensive–she’s going to need transportation, equipment, therapies. That kind of woman, society is saying, is too disabled. And that’s why we have a bunch of them in the news as the latest victims of Jack Kevorkian. I think there’s a real connection.

JD: So you don’t see the traditionally beautiful people with disabilities as paving inroads to a broader acceptance?

CG: I would like to think that. In the beginning, I wanted to believe that’s what was happening. And then I saw that every time society seemed to be willing to step forward and say, “Yes, isn’t she lovely,” I would also see that they were getting more vocal about believing that some lives are not worthy. So they’ll pave the way to a point. You’ve heard of the glass ceiling for women–they get promoted in jobs only to a point. I think that women with disabilities will get promoted in aesthetics only to a point.

JD: How does childhood disability vs. later trauma affect body image and self-esteem?

CG: Recent studies show what may seem paradoxical: that women who have been disabled all of their lives–even if they have a pretty dramatic disability–seem to have a better chance of thinking of themselves as intact and fine. In other words, they have a better body image.

Harilyn Rousso’s research shows that these women tend to have the attitude, “This is the way I am; this is what’s normal and beautiful to me; I like myself, and I’m fine–society’s just messed up.” Whereas women who grew up without disabilities were able to adhere to the standards a lot more as they were growing up, so those standards became internalized. When they become disabled, they say, “Wow–now I fall short.” And it’s very, very traumatic. I know from working with women who had spinal cord injuries that some of the most horrible days of depression came around looking at themselves in the mirror or seeing how other people reacted differently to them.

JD: How does this translate into relationships with men?
CG: I notice more in younger women a sense of holding out. It’s no longer holding out your virginity–it’s holding out for a nondisabled man.

JD: The trophy husband?
CG: Right. But there’s some reality to this. An informal observation of mine is that anybody with a disability who acquires a nondisabled mate does seem to buy some legitimacy in society. It seems people look at them as more normal because they’ve gotten this normal person.

JD: So what should women with disabilities do?
CG: We should see ourselves as pioneers, as dissidents who will not accept the traditional lines of aesthetics that society draws. There are revolutionaries in every period, and we are revolutionaries. We are really challenging that very narrow aesthetic that’s there to penalize people and exclude them. What we need to do is what every woman needs to do–disabled or not–and that’s not pander to the aesthetic that’s handed to us, those outside standards that don’t fit, that are really oppressive.

We need to decide for ourselves what works for us and what is beautiful in us. We need to first expand our own and each others’ vision of what is beautiful. And I want to be clear: I don’t think that there’s no hope. I do think that disabled people can go very far to challenge and expand society’s view of what’s acceptable and what’s beautiful. I don’t think it’s happening right now through commercials or through Share a Smile Becky.

Where it’s going to happen is through the development of disability culture, a culture that’s really strong, that’s really a counterculture, that really says the values of the majority are punishing and narrow and exclusive, and that we have one that’s beautiful and open.

And just as African Americans impressed general society with the Black is Beautiful movement, I think we can do the same through our control of our cultural symbols and expression–not through Madison Avenue putting us in some commercials. Although I appreciate that too. It’s important for us to be there–I would just like to see some everyday, really disabled person in those commercials.

What we have to do is build our own aesthetic. Almost every other minority group has a model of identity development–a model of how their people challenge the dominant culture’s standard, build their own standard, and become the people that they are proud of–despite the fact that they don’t match what white, middle-class society says they should be. People with disabilities don’t yet have a model of identity development, but that’s what we need.

We women with disabilities need to support each other and we need to find brothers with disabilities who will be supportive of us challenging the aesthetic as well–the brothers who are nonsexist, who want to support us and who really see us as beautiful. We need to celebrate bodily differences. And I think it’s happening. People like Cheryl Marie Wade and Neil Marcus are writing poems about different bodies being beautiful. That’s really impressive and important. If Cheryl’s poetry gets out into the mainstream, that will help broaden acceptance of our beauty.

So I say that we all join together in this cultural revolution. And on a smaller scale: Support each other in how we feel beautiful. This movement from being other-defined to being self-defined–that’s what we need to do. We need to believe in ourselves.