The fact that decades of discussion are finally leading to change is a great thing. But it's disheartening that so many misconceptions still flourish.

Lipkin theorizes that our culture's fear is often what holds us back.

"We need to tap into the awareness that we are all vulnerable, that in the blink of an eye any one of us can be faced with the reality of disability of one kind or another," Lipkin says. "I think that this vulnerability may be the basis of some of the pervasive psychological, social, societal resistance to dealing with disability, because people don't want to recognize their [own] vulnerability."

Easter, 1985: The author, right, with her mother, Gerri, and younger brother, Jeff.
Easter, 1985: The author, right, with her mother, Gerri, and younger brother, Jeff.
Married for 35 years, Max and Colleen Starkloff are tireless advocates for people with disabilities in St. Louis.
Jennifer Silverberg
Married for 35 years, Max and Colleen Starkloff are tireless advocates for people with disabilities in St. Louis.

Lipkin quotes a disability activist named Paul Longmore: "He said... 'We harbor unspoken anxieties about the possibility of disablement, to us or someone close to us. What we fear, we often stigmatize and shun — and sometimes seek to destroy.'"

The danger in resisting that vulnerability — and giving in to the fear — is that disability isn't an isolated occurrence. According to the U.S. Census Bureau, 12 percent of the U.S. population has a disability. Colleen Starkloff points out that, as the millions of baby boomers age, they too will face the prospect of developing a disability.

"Even though boomers don't necessarily identify with disability — because there's a stigma attached to being disabled — they're going to become disabled because they can't see, they can't hear, they can't walk or they may lose some of their mental capacity," she says. "Whether they want to call it disability or not, those are disabilities. And if our society doesn't become more reflective of how to include them, and enable them to age in place successfully and happily, we've got a big problem coming."

Perhaps more than most people, I worry about aging in the future. Although cerebral palsy itself isn't progressive, the physical manifestations of the disorder are affecting my body. Every time I see my specialist at Barnes-Jewish Hospital, she tells me that my joints are going to wear out faster than regular people's, because of the wear and tear my gait puts on them. When? Not until I'm in my 50s, she tells me. Still, on days when my knees ache so it hurts to stand up, or my back and feet throb with pain, I fear that the aging process has already started. There's very little research available on aging of those with cerebral palsy — so I often feel as though my future is a blank slate. And so I wonder what my life will be like in the future, what will happen if I'm in too much pain to walk or work.

So far, I've been very lucky in terms of employment. As a music critic, any accommodations I need to do my job are basic: a chair, because standing for long periods of time is difficult for me, and close parking. St. Louis concert venues have always been extremely flexible, and I've never had any problems.

Other places haven't been so welcoming, however. At a multi-level venue in Chicago, a worker viewed me with suspicion and skepticism when I asked to use the elevator, as if I didn't really need it. And when I attended South by Southwest in Austin, trying to find a seat at many venues was fruitless: Owing to what I was told was a directive from the fire marshal, venues couldn't have extra furniture such as chairs around. At one club, workers asked me to give up the chair in which I was sitting; citing my disability, I refused, and I was allowed to keep it. On another occasion, though, the venue made me relinquish my chair and stand. I ended up having to leave that show early, because I couldn't physically handle being on my feet anymore.

Many people I interviewed for this story cited unemployment as the biggest current problem facing people with disabilities. According to U.S. Bureau of Labor Statistics figures for October 2010, the overall unemployment rate for people ages sixteen and over who had a disability was 14.8 percent. (The rate for those without a disability was 8.8 percent.) More troubling, only 21.4 percent of people with disabilities were participating in the work force — compared to 69.8 percent of people without disabilities.

The very first title of the ADA addresses employment discrimination and ostensibly offers protections. Still, according to Tom Kennedy, a Clayton-based lawyer, lawsuits involving employment and the ADA are becoming increasingly difficult to win.

"The employment problem is, either you're not disabled enough to be qualified, or you're too disabled, and therefore you require too much accommodation — and it costs too much and so forth," he says. "In the employment area, frankly, it's so difficult to do an ADA case. I can't figure out a way to do an ADA case and succeed."

In David Newburger's eyes, battling employment discrimination also involves a shift in mindset.

A person with rheumatoid arthritis, he says, may need four or five hours before they're functional in the morning, so they can't necessarily start by 8 a.m. They might have to start their workday later — and therefore work later. But even though they can still put in an eight-hour day, some judges have ruled that their place of employment doesn't necessarily have to accommodate them.

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