We're not going away

Greg Smith is a forty-year-old divorced father of three who lives with muscular dystrophy. "He can move and drive and talk," his young daughter explains in Joanne Caputo's documentary, On a Roll, which airs on the PBS series Independent Lens in conjunction with Black History Month.

He can talk, all right. A radio host and disability rights activist, Smith for ten years anchored the nationally syndicated radio show On a Roll, which highlighted discrimination that affects forty million voting-age Americans living with a disability.

He is at the center of this documentary, but his father, mother, and sister also have compelling parts. This is a complex portrait of a family that includes more than one member with a significant disability.

With as many moments of disquieting tension as warm solidarity, the film portrays the family negotiating--though not necessarily resolving--issues of how adult children with disabilities and parents can live together. It also focuses on the complexities of child rearing for parents with disabilities.

But this is not just a film about Smith's family.

Lack of reliable transportation--an employment barrier for many disabled Americans--is a continuing frustration for Smith. There is a moment when Smith looks the camera straight in the face and says, "The President is speaking on the ADA, and I can't get a cab. That's pretty ironic."

The film also includes observations on how racism differs from disability discrimination, which Smith, who is African American, says can be as overtly hateful as racism but is most often based on "a flesh-to-flesh fear of mortality." Such discrimination occurs in the workplace as well as in the community, the film notes.

On a Roll provides interviews with disability rights leaders who say that "interdependence" more accurately describes how people with and without disabilities actually live. This perspective is offered by, among others, Mike Ervin, founder of Chicago-based ADAPT (Americans Disabled for Attendant Programs Today), who was the producer of On a Roll radio and is the current producer of The Strength Coach radio show.

In the film, we see Smith getting assistance with transferring in and out of his chair, a sight that will likely be familiar territory to most viewers. But though we don't witness it, his life also includes accepting help in negotiating conventionally solitary activities (using the toilet, bathing, moving during sex).

"I've become very comfortable with the fact that I can accept help from others and feel no shame or self-pity," he tells me. "In the movie, the concept of assisted sex came up because I was dating a woman with a disability. In real life, that was a one-time experience for me up to this point, but perhaps it is an area that I will explore in the future, regardless of whether my partner has a disability or not." He says there are other areas he hopes to explore "beyond just the basics of life."

He still encounters old biases. "The prevailing attitude about any disability is that the best thing to do is make it go away," he says. "That attitude is slowly getting better, but I can tell when people feel sorry for me. And I get that sensation a lot. What really affects me is when it comes from the African American community."

He believes that until there is cost imposed on those who engage in bias against those with disabilities, the discrimination will continue. Comparing the word "retard" with the word "nigger," Smith says that "the word 'nigger' isn't used because people know there will be a backlash if they use it. They therefore feel no pressure to change."

Now working as a motivational speaker and hosting the radio show The Strength Coach, Smith says his goal is a society in which the words "muscular dystrophy" are as much associated with a human face as they are with a medical diagnosis. And he doesn't mean the faces on the muscular dystrophy telethons. "Whoever 'really' advocates for people with muscular dystrophy and other congenital diseases," he says, "needs to promote public figures who have the conditions in order to move our culture away from the concept that the disability is a private tragedy."

Ingrid Tischer is a disability rights activist and writer. She is also the communications officer for Equal Rights Advocates (www.equalrights.org), a public interest law firm specializing in gender-based discrimination in the workplace.

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