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A Movie, a Word and My Family's Battle
A man my age who grew up in a small town in Georgia told me about a boy with Down syndrome who lived down the street. The boy wasn't allowed to go to school and was kept behind a board fence in the backyard; neighborhood kids used to climb a tree to spy on him. The man wept as he recalled the view from an overhanging branch.
Over the past 35 years, the legal landscape has been transformed. In 1975, the Individuals with Disabilities Education Act granted children with disabilities the right to a public education, and the federal government pledged to pay a substantial portion of local special-education costs. The Americans with Disabilities Act of 1990 prohibited discrimination against the disabled. A group of people who'd been invisible emerged to work toward taking their rightful place in society.
We've come a long way, but we still have far to go. There are still 38,000 people with intellectual and developmental disabilities housed in institutions nationwide. The federal government hasn't kept its promise to fund special education, and millions of children across the country remain poorly served or not served at all.
Meanwhile, adults with intellectual disabilities are on waiting lists for independent living services all over the country; one recent report estimated more than 100,000 in Texas alone. These adults are largely unemployed and frequently live in poverty. Experts estimate that fewer than 20 percent of those of working age are employed, even though research shows that they are reliable and effective workers when given support and matched with appropriate jobs.
Without a coherent federal policy for providing community services and support, millions of families across the country are left to take care of their loved ones on their own. Parents have little assurance that their adult children will be cared for after they die. At last count, 715,000 people were residing with caregivers age 60 and older. As life expectancies increase, that number grows.
On top of all this is the problem of negative public attitudes. Recent research conducted by the University of Massachusetts found that, if given a choice, more than half of young people wouldn't spend time with a student with an intellectual disability. More than half of parents didn't want such students at their children's school. Almost half of the young people surveyed wouldn't sit next to a student like Margaret on a school bus.
I find these facts and statistics terrifying. My husband and I have spent much of the past two decades doing all we can to shield Margaret from the effects of what I've just described. With a lot of hard work on her part, and with the active support of family and friends, she's faring far better than doctors predicted when she was born. She's a high school graduate, works part-time at a Mediterranean restaurant, takes care of her own apartment and volunteers at her local hospital and senior center. She's a regular at the gym. She has a lively social network, a cellphone, an e-mail address. That's not to say that her life is rosy all the time, but it seems to be working.
I'd like to hold on to the hope that Margaret's journey reflects our steady national progress toward respecting and valuing all our citizens. But I'm stopped cold by the thought of a major studio constructing an ad campaign and film that prominently feature the word "retard" without a thought to the consequences.
According to the nonprofit Arc of the United States, people with developmental disabilities are 4 to 10 times more likely to be victims of violence than those without. There are always people looking to pick on other people. With the introduction of "Never go full retard" into the lexicon, I can't help thinking that those people have been handed both a weapon and a target.
DreamWorks and the actors in "Tropic Thunder" have already said that this is not their problem. They say that the movie targets Hollywood and seeks to criticize past exploitation of people with disabilities in stereotype-filled blockbusters such as "Rain Man" and "Forrest Gump."
Such criticism is surely present, and it's not wide of the mark. The film is rated "R" for a reason. It's art, even if crude and distasteful, and it's entitled to this country's broad protections for freedom of speech and expression.
Yet "Tropic Thunder" provides another example of the unthinking acceptance of language that promotes oppression. Anticipating public scrutiny, the studio was careful to build nuance and subtlety into the film's racial humor. A white actor who uses blackface to portray a black character is countered at every turn by a black actor critiquing his actions. But there's no on-screen presence countering the Simple Jack portrayal, nor did the filmmakers consult people with intellectual disabilities or their families about the script.
It seems that the studio never considered that its portrayal of people with disabilities would touch a nerve farther below the skin than it would want to go. Again we hear: I didn't mean it like that, and lighten up. It doesn't mean anything.
For millions of Americans like Margaret and me, it does.
Patricia E. Bauer, a former Washington Post reporter, edits www.patriciaebauer.com, a Web site of news and commentary on issues related to disability.