We're Not Going Away

Tischer, Ingrid

We're Not Going Away By Ingrid Tischer 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...

...He says there are other areas he hopes to explore "beyond just the basics of life...
...But this is not just a film about Smith's family...
...He can talk, all right...
...It also focuses on the complexities of child rearing for parents with disabilities...
...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...
...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...
...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...
...He is at the center of this documentary, but his father, mother, and sister also have compelling parts...
...Such discrimination occurs in the workplace as well as in the community, the film notes...
...He believes that until there is cost imposed on those who engage in bias against those with disabilities, the discrimination will continue...
...The prevailing attitude about any disability is that the best thing to do is make it go away," he says...
...He still encounters old biases...
...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 movie, the concept of assisted sex came up because I was dating a woman with a disability...
...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...
...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...
...And he doesn't mean the faces on the muscular dystrophy telethons...
...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...
...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...
...Ingrid Tischer is a disability rights activist and writer...
...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...
...They therefore feel no pressure to change...
...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...
...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...
...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...
...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...
...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...
...On a Roll provides interviews with disability rights leaders who say that "interdependence" more accurately describes how people with and without disabilities actually live...
...Lack of reliable transportation-an employment barrier for many disabled Americans-is a continuing frustration for Smith...
...That's pretty ironic...
...And I get that sensation a lot...
...What really affects me is when it comes from the African American community...
...This is a complex portrait of a family that includes more than one member with a significant disability...
...That attitude is slowly getting better, but I can tell when people feel sorry for me...

Vol. 69 • February 2005 • No. 2


 
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