Reflecting on change is not an easy endeavor. Life is change. With that in mind, New Mobility set out to get a glimpse of how the experience of women with disabilities has changed in the past few decades–both politically and personally. We talked to many women, from twentysomethings to seventysomethings, from all over the country and with all sorts of backgrounds.
Mona Hughes, 58, knows what it was like to grow up in an era when women with disabilities were expected to remain in the shadows. “We were a generation of individuals with disabilities raised with the idea of don’t make waves. Don’t complain. Be grateful for what you have.” By contrast, says Hughes, a polio survivor and author of Women and Disabilities: It Isn’t Us and Them, younger women are much less willing to accept that attitude.
Hughes and other experienced advocates see change on the horizon as young women with disabilities deal with emerging issues such as caregiver shortages and eugenics, as well as the continuing struggle for more self-determination. “I’m very impressed with young disabled women,” says Marsha Saxton, 50, a professor of disability studies at University of California, Berkeley, who has spina bifida. “I work with disabled college students, and they are much more sophisticated than previous generations.”
Some change will also likely come from aging baby boomers, who could have a huge impact on the intangible aspects of disability. Polio survivor Carol Gill, 52, an assistant professor at the University of Illinois at Chicago and director of the Chicago Center for Disability Research, anticipates that boomers will redefine aging, redefine beauty and redefine attitudes toward disability.
“I think we’re on the threshold of real change,” says longtime MSer Dianne Piastro, 62, a former syndicated columnist on disability who designed the first disability course for California State University, Long Beach. We already have many laws on the books, she adds, but the next generation must be ready to take over. “We have to have enough people who are able to get out there and make the changes.”
While experienced women bring their personal involvement and knowledge of disability history to the fore, younger women seem to be motivated by an innate desire for change. “They’re a little more impatient,” says Hughes. “They get impatient hearing ‘no.'”
They may not like hearing no, but they are certainly saying no: no to the societal attitudes and messages that have devalued them and told them they aren’t beautiful, that they aren’t normal, that they will be lucky if a man loves them, and that they shouldn’t have babies.
The Road to Self-Esteem
We live in a hyper-body-conscious society where women struggle to keep themselves looking “perfect,” and women with disabilities have not been excluded from that stress.
Studies of adolescents with disabilities found that their main concerns were the typical teen girl points of angst–dating and breast size–says Margaret Nosek, 48, head of the Center for Research on Women with Disabilities and a professor at Houston’s Baylor College of Medicine. “So we absorb all the same stuff, but in addition we’ve got a really strong stigmatized factor,” says Nosek, who has spinal muscular atrophy.
You might imagine that would be hell on the collective self-esteem. But a National Study of Women with Physical Disabilities in 1997 published by Nosek’s center found that 78 percent of the women surveyed reported moderately high or high self-esteem, though generally lower self-esteem than their nondisabled counterparts. However, the researchers also found it interesting that the levels of self-esteem didn’t necessarily correlate to the disability; rather it was a combination of factors–such as whether the women were happy with their activities or in a relationship–that made the real difference.
Since it was the first major study of women with disabilities, it’s difficult to say how the figures compare to previous decades, but researchers are starting to look at the issue more in-depth. Gill and Joy Weeber, 45, a polio survivor, student and disability activist in North Carolina, are studying how people with disabilities develop a positive sense of self.
Although they are only halfway into the study, Gill and Weeber are finding that people with disabilities develop their identity and self-concept in ways similar to other minority groups–by being part of a community and getting validation from that community. However, there is a twist when it comes to this particular minority group. “One of the surprises so far is that for people with disabilities, that validation frequently happens from other disabled peers,” Gill says. “What we’re finding in women with disabilities is that they’re talking about having a girlfriend who has a disability or has a lot of understanding of the issues of diversity.” And it’s that friend who gives them the validating messages.
That’s not to say that the dominant culture has no role. For Melina Fatsiou-Cowan, 45, a painter from Greece who moved to Alabama with her husband 10 years ago, validation came from her new neighbors. She was born with spinal muscular atrophy–a source of pity in her native country–and was surprised by how Americans were so much less concerned with her disability. “I had the shock of my life because people here accept disability much more than they accept it in my country,” Fatsiou-Cowan says. Her new friends were more interested in her being Greek than in her being a wheelchair user.
Now Fatsiou-Cowan’s work–beautiful watercolor paintings of women with disabilities–has been, in turn, a source of affirmation for many other women. Gill says she tells many women about Fatsiou-Cowan’s Web site–www.disabilityculture.org/melina–which shows several of her paintings of women’s beautiful twisted bodies. “When they see her art, they are overwhelmed and so excited,” Gill says. “It is immediately validating.”
Ironically, Gill says that the messages of invalidation often come from those closest to women–their families. “I hear a lot in my research from women that it’s their own families who tell them that no man will ever love you,” Gill says. “It’s their own family that says don’t think about children. It’s their own family that tells them try to walk straighter, you look funny, or don’t wear a low-cut blouse because your chest doesn’t look good. Those are messages that are not purposely denigrating, but they are messages of implicit devaluation.”
Another factor in the self-esteem picture is isolation. Many women with disabilities are poor and marginalized and have little ability to interact with the people best able to validate them, Nosek says. “The isolation that is imposed on them keeps them oppressed in so many ways.” Because of this, she says the most rewarding aspect of her work is connecting with women individually. “The only way we’re going to make any impact in the disability scene is one-on-one in the independent living centers, the community health centers, the YWCAs,” Nosek says.
This kind of interaction is key, agrees Gill. “When you look at what women with disabilities have managed to do in terms of their own networking, their own activism, their speaking out, their own critiquing of values and slowly joining forces with other minority women in the women’s movement, that’s exciting. That’s where it’s hopeful.”
And this is happening: Young women are getting together and embracing their whole selves. Piastro, who has many young women with disabilities in her courses, is optimistic. “I have seen them embrace their disability–integrate it into their identity,” she says.
Reclaiming the Body
While many older women are still saddled with conceptions of society that they internalized–like that they don’t measure up physically–younger women are starting to reject those messages.
“Women in general get a lot of bogus information on how they should look,” says Naomi Ortiz, 22. “It doesn’t freak me out anymore. I’m not scared about getting wrinkles and fat. To me, what matters is whether or not I’m doing something worthwhile.”
That doesn’t mean it’s too late for women from other generations to revise their body image. Writer Lorie Levison, 49, describes her struggle to forge past the concept of body image to the idea of body innage–and assert her right to enjoy being in the body she has.
Nosek faced a changing body image when she got a tracheotomy. “Now I have this tube sticking out of my throat,” she says. “It’s very embarrassing.” But, she adds, “I’m dressing much sexier–I’m compensating for the tube.” Yet the idea is not to hide the latest sign of disability, but to accept and integrate it. “Some of my friends get me upset,” she explains. “One friend came over and brought all these different scarves [to cover the tube]. I don’t want to wear scarves!”
Weeber, who had polio as a child, talks about feeling disconnected from her body in reaction to years of surgeries and rehab. In the process, her mind “separated” from her body, just so she could deal with the loss of control, she says. She experienced a reunion with her body when the kitchen cabinets fell off the wall and onto her 15 years ago–she subsequently happened upon a physical therapist who understood how she was alienated from her physical self.
“In the process of recovering from the accident, I found healers who helped me reintegrate who I was,” she says. From there, she took back control of her body, started learning self-care and how to nurture her body rather than trying to dominate it. “I had been brainwashed by the rehab agenda to never listen to the body’s messages about pain–that it’s mind over matter. Don’t listen to the pain; you just plow through the pain.” Now, she listens to the signals when her body’s tired, instead of pushing it to perform. “That process taught me to trust again,” she says. “I hadn’t trusted any adult from age 10 to 30.”
Similarly, NM’s associate editor, Josie Byzek, 34, has come up with a personal mantra for dealing with MS: My body is not the enemy. No matter what happens, I will love my body and I will live as fully within my body as I can.
“With MS,” she says, “it’s the not knowing what’s going to happen next that can really get to me, and I have to be on guard against trying to mentally separate myself from my body. It’s not my body’s fault it picked up a disease and it’s not my fault that I can’t make it better.”
Once upon a time, women with disabilities–particularly those who use wheelchairs–weren’t expected to date or have sex or get married. While that attitude has definitely changed in recent years, romantic opportunities are still much harder for women with disabilities to come by than for nondisabled women. According to the national survey in 1997, 58 percent of the women with disabilities surveyed were single, compared to 45 percent of the women without disabilities.
Other studies have found that men with disabilities are more likely to marry than their female counterparts. “It sounds depressing,” Gill says. “I think there are few opportunities for women being regarded as attractive and strong. However, I encounter a great number of women who are connected with lovers and partners, same sex or opposite. And it shows me that love really does conquer all.”
And attitudes are changing from generation to generation. Ruth Brenyo, 78, had polio at 2 and married at 46. She wasn’t sure she wanted to at the time–as an accessibility activist and one of the original organizers of Open Doors for the Handicapped of Pennsylvania, which began in 1957, she had a busy life. But he was a nice man, older, and already had children. Besides, she thought at the time, it might be her only chance to tie the knot: “There are not many people who want to marry a woman in a wheelchair.”
The younger women interviewed were more blasé in their attitudes about relationships, assuming they would have them. Ortiz, a student at the University of Arizona in Tucson, has had two semi-serious relationships. And if she doesn’t go for lifelong commitment, it won’t necessarily be because of her disability, arthrogryposis. “As far as getting married, I think it’s more my personality than my disability that limits me, which is OK,” she says.
The Joy of Motherhood
If women with disabilities weren’t expected to marry a few decades ago, they certainly weren’t expected to have babies and raise families of their own. Brenyo recalls that her gynecologist didn’t talk to her about options, but merely taught her how not to get pregnant. “He said I shouldn’t have any children because my lower extremities weren’t developed,” she says. “He thought it wouldn’t be good for my health.”
Consider the difference now. Carmen Jones, 35–who was one week away from her due date for her first child when she was interviewed for this article in July–at first thought she would have to get a Caesarean section. But her doctor, a specialist in high-risk babies, told her that women with spinal cord injuries have vaginal deliveries all the time.
But Jones’ experience is not the norm. When Kathy Kusler, 35, was pregnant with her first child, her Ob/Gyn in New Mexico didn’t have a lot of experience treating women with spinal cord injuries. But Kusler, C7-T1, dug up some articles on the subject and took them to her doctor. They discussed the information, considered options and decided not to do an epidural. The delivery went fine.
On the one hand, it might seem alarming that Kusler had to educate her doctor. However, it is heartening to many women, including Saxton, that the physician actually listened to her. That a doctor was willing to admit he didn’t know everything and really hear his patient is a breakthrough, she says. Kusler’s experience illustrates how women from younger generations have become more empowered to steer their own lives. “Young women have taken a quantum leap in terms of seeing themselves as active consumers of health care and using knowledge and information,” Saxton says.
While the medical community and society at large may be more accepting of women with spinal cord injuries having children, there is a darker idea that is beginning to emerge: eugenics, or selective breeding. It may sound like something from a dystopia, but it’s a concept that has already seeped into our collective consciousness.
Sarah Triano has felt it firsthand. A 26-year-old student at the University of Illinois at Chicago and co-founder of the National Disabled Students Union, Triano has a non-apparent genetic disability, which she chooses not to reveal. Because her disability could be passed on, she has heard the message over and over again that she should opt not to have children. “The expectation is that I should not have kids, and the responsible thing to do is not contaminate the gene pool,” Triano says.
While the changes in the past few decades have been mostly positive, Nosek points out that many things have not changed enough. Younger generations have their work cut out for them: Women with disabilities are still disproportionately poor and unemployed, they still suffer discrimination and negative stereotyping and they are still grappling with isolation.
But there are some real reasons for hope, she adds. “It’s really important to make the point that attitudes are changing,” Nosek says. She thinks young women will build on this fledgling empowerment. “That’s where the change will happen,” she says. “If we can figure out how to take control of our lives, then a woman’s attitude about herself and her disability can change.”
Gill sees additional hope in the mainstream women’s movement, which traditionally has not recognized women with disabilities. As the organizations mature, they become more understanding that the issues of all women–with disabilities or not–are the same.
“I hope that at the very beginning of their lives that women can begin to realize that disability, like everything different, is part of life and women’s lives,” Gill says. “Hopefully, women can be increasingly surrounded by images that say, ‘It’s OK to function differently. It’s OK. We who’ve gone before you paved the way to make you feel proud.'”