What’s in Your Head? Who Put It There?

By | 2017-01-13T20:44:00+00:00 May 1st, 2004|
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Illustration by Deron Cohen

We called three of our favorite physically disabled counselors and psychologists and asked them a few simple questions like these: Are wheelchair users more likely to be depressed, suicidal or otherwise off-center emotionally or psychologically? What effect does living in our society have on wheelchair users emotionally and psychologically? How can wheelchair users maintain or attain emotional/psychological health? Simple questions, yes. Easy questions? No way.

The Disability Blues
Certified social worker Harilyn Rousso is nationally recognized for her work with girls and women with disabilities. Rousso also has cerebral palsy and gets tired of how people react to her voice. “I want to speak clearly and not have people think I’m drunk or sick or dying when I answer the phone. I feel like screaming, ‘This is the way I speak!’ The limitations themselves can wear you down, and you can’t get a break.”

And then there are the well-meaning nondisabled people who find her inspirational and express their awe of the amazing smart things she thinks. “I want to say, ‘Why is it so amazing?’ Or I feel tempted to make the decision that I’m never going to leave my house again, I’m just going to call the Chinese restaurant for all my meals and never be seen again,” she says. “It helps to have a sense of humor, but sometimes it’s hard to get there.”

Encounters like these can grind the tallest mountain down to a pebble, which brings us to Rousso’s main point: “Disability in itself does not cause depression, that’s absurd,” she says. But being isolated, discriminated against, prejudged, and the target of ignorant comments will bring anyone down. “If you’re constantly oppressed day after day, it’s pretty depressing,” she says, “but there’s a lot of variation in how people respond, based on a host of internal and external factors in their lives.”

Ignoring how you feel can have serious emotional consequences, as Joy Weeber discovered. A doctoral candidate in counselor education at the North Carolina State University, she used to pretend she always felt fine. “Our culture brainwashes us to not truly listen to our bodies,” says Weeber, who has post-polio sequelae. “In fact we’re even taught it’s our job to overcome our disabilities, and this leads to crashes. We have to deny the fatigue, pain, exhaustion and push through it all, which then sets us up for the cycle of hitting the wall.”

Weeber knows this pattern from her research–she interviewed 18 leaders in the disability community for her dissertation–and also from her personal life. She says years of being subjected to the “just do it” mentality of Western medicine wounded her psyche, and for a long time she lived in a state of fatigue-induced depression. “I’d have a spurt of energy, withdraw, rest up, go back out, blow my body again and become depressed,” she says. The cycle continued until she seriously injured herself and was forced to slow down.

Weeber feels she’s lucky–she got off with a warning. “The fact that we’ve lost so many of our great leaders at an early age is because we all have difficulty changing our pace,” she says. “Because society says to us ‘you aren’t valid unless you do it our way,’ even with the ADA.”

“It’s hard to believe you have a right to be part of the world when you receive the message that you are so different you don’t belong,” says Carol Gill, a power wheelchair user due to polio. Gill, a trained research and clinical psychologist, has researched what it means to live with a disability for more than 20 years. Currently she studies society’s attitudes toward disability and the impact they have on disabled people.

“These are the messages we get: We don’t belong, we’re not grownups. And if we give, it’s unseemly that people take what we give. We’re not sexual or if we are, we shouldn’t be. We’re not capable of nurturing, we’re not real women or we’re not real men, and if we’re gay or lesbian we’re that way by default. There are so many negative messages, it’s hard to find your way out of it. It’s hard to develop the message that–as disabled people–we must: ‘I’m not going to let the world define who I am.'”

She says it’s too simplistic to directly blame a physical disability for depression. “I’ve reviewed a lot of research studies and some of them have even tried to link level of impairment with level of depression, and it doesn’t work,” Gill says. “There is no significant correlation between level of disability or impairment and level of depression or well-being. How disabled we are is not the critical factor; that’s one of the myths we have to purge from people’s minds.” In fact, she says there have been studies showing that people with the most extensive disabilities often enjoy their lives the most.

In a society that often believes people are better off dead than disabled, Gill notes a lot of the available research on suicide and disability paints a disturbing picture. “It’s not a news flash, but a lot of it boils down to the concept of burden: We are made to feel like burdens, physically, emotionally … and that’s an untenable self-view. You can’t keep thinking of yourself as a burden and thrive.”

It’s a Family Affair
Family acceptance is especially important for people who were born with their disabilities or acquired their disabilities in childhood. “A lot depends on parental attitudes, on how welcoming they are for a child who is different from themselves,” says Rousso. “Most parents expect to have nondisabled children, so when you give birth to a child with a disability, it’s a shock. If they can come to a place where they can appreciate the child’s strengths and see the disability as not the defining feature of the child in a negative way, then I think they can grow up feeling perfectly OK and good about themselves.”

It’s a misconception that children with disabilities generally have lower self-esteem than nondisabled children, says Rousso. “There are some studies that say

[disabled] kids have lower self-esteem, and there are some showing there’s not much difference. Disability’s not the defining factor. This makes sense because disability’s not just a physical fact, it happens in the social and political context, and it depends on what that context is.” A loving, accepting family will most likely raise a child with high self-esteem regardless of whether the child is disabled or not.

Rousso also says there is some evidence that young disabled people have a higher rate of body dissatisfaction and eating disorders than nondisabled youth, and the rate of adolescent pregnancies is higher for disabled girls than it is for nondisabled girls, “which is shocking because of the myth of asexuality. But often these higher pregnancy rates are linked to higher rates of sexual abuse.” She notes that womanhood in our society is linked with being seen as sexually desirable. “Some girls with disabilities may put themselves in sexually risky and/or abusive situations to feel more womanly.”

Disabled girls don’t usually have equal access to adequate formal and informal sex education, and this is compounded by social isolation and lack of opportunities to learn social skills that are necessary to find appropriate partners.

Often growing up with a physical disability means spending huge chunks of time in hospitals and other institutions, and these are not the most wholesome places for girls to come of age. Yet many parents think it’s their duty to follow up on any possible medical treatment, and tend not to think of the long-term consequences these hospitalizations may have on their children.

“Our families just think we have mechanical problems, they have no clue about the internal landscape of our lives,” says Weeber. “No clue that their preoccupation with us becoming normal tells us we’re not acceptable as we are, which sets us up later in life to hit the wall.”

Weeber spent many hours with doctors who tried to fix her adolescent body, the doctors not caring what having her literally exposed to them might do to her emotional development as a young woman. “I was so troubled by my sexuality, defining my own sexuality, because the way I was treated by male doctors taught me men were dangerous. And my way of dealing with that was to keep them 500 yards out.”

Weeber says this conditioning by doctors is why disabled women are so prone to be sexually abused, and abused in general. “We have been taught through the medical system that our bodies are not our own, and what happens to our bodies we have no control over, and that extends to our sexuality. I just built a moat and pulled up the bridge.” She says she didn’t feel safe enough to explore sexuality until she was 35 years old.

Learning New Strategies
Weeber tries not to use the term “self-destructive behavior” when referring to those ways of dealing with problems that end up being harmful. Instead, she prefers to think of them in terms of the Buddhist concept of compassion, which recognizes many of these behaviors as survival strategies that don’t work well anymore. “We’re taught to cut them out of our lives, but what we should do instead is honor them and say we’re letting them rest.”

Such strategies are necessary to survive in a society that disdains limitations, so disabled people learn to deny their limitations in order to participate in society. “But at a certain point that becomes destructive to us physically, psychologically and spiritually,” says Weeber. “We die young, we ruin our health, all this stuff because we’ve been making choices about living up to the expectations of society, which in itself abuses who we are.”

Of the18 leaders in the disability community Weeber interviewed for her dissertation, half of them said they were where they are today because of many years of psychotherapy. “The psychotherapy fortified them to deal with the prejudice and oppression we all deal with,” says Weeber. “Because society doesn’t like our difference, that influences how we see ourselves.”

Rousso agrees therapy can be helpful, and suggests disabled people consider interviewing the therapist first. “People can get to good places working with someone who listens well and can help them interpret what’s going on with them and why,” she says. “The trick is to find therapists who understand disability as a socio/political issue and not just a personal tragedy. It’d be great if we could put together some kind of formal or informal list of therapists who ‘get it.'”

It Takes a Community
One way to counteract society’s negative messages regarding disability is to identify with the larger disability community. “For some even just knowing there is a strong and respectable disability community is something that can really help buffer the feelings of shame and hopelessness,” says Gill. “If you can say that there is a group of people out there that is like me in some important ways, similar to me, and that is a strong and valuable group of people, that helps protect a person from disability prejudice.”

Gill says psychologists who study identity formation in marginalized social groups talk about identification with that social group as sort-of having a support group in your pocket–an idea she finds useful. If she’s the only disabled person in a room and part of what she’s saying is devalued by disability prejudice, she feels shaken. “Then I think about the group in my pocket, and that fortifies me.”

She says she knows others who do the same thing. “It’s a safety net, the connection that gives you clout, gives you power,” she says. “Even if it’s watching a disability rights protest on television or reading about a big ADA win in the newspaper, any time we are present in the world in a big way, it’s another encouragement for a disabled person to say, ‘Yes, I belong.”

Weeber agrees that for some people it’s enough to see the disability community from a distance. “It doesn’t have to be first-person; it can be just encountering things in writing or going into your first independent living center or being in a certain occupation that challenges you to be open about your own disability and see it positively.”

She says beginning to see disability as a sociopolitical reality is the ‘aha’ experience for the majority of those she interviewed, and for herself, too. In fact, it is key to maintaining the physical-emotional-spiritual balance. “I am through hiding the reality of my life and my world and my people’s world,” she says. “I’m here to be real.”