Wednesday, March 25, 2009

two steps back

Nearly a week ago, President Obama appeared on “The Tonight Show.” Personally, I would have preferred he appear on “The Late Show with David Letterman,” but he could have done worse than Leno. He could have appeared with Jimmy Kimmel, infamous for making fun of little people. Whatever the program, unlike some critics who called his participation unpresidential, I was pleased with his decision to appear on Leno. At least, until the next morning.

I didn’t watch Obama on Leno, but I soon learned that his appearance unhinged the confidence he had built with the nation’s disability community. Joking with Leno about his skills as a bowler, the President used people with intellectual disabilities as a punchline when he compared his ten pin prowess to competing in the Special Olympics.

Though the President quickly apologized to Tim Shriver of the Special Olympics, the apology didn’t quell the furious debate that followed within and without the disability community. If the President’s comment had been an oversight, a poor choice of words at the wrong time, perhaps the apology would have closed the books on the issue.

When Obama wanted to make a point that he was a really bad bowler, the best way he could illustrate that was a joke about the Special Olympics. Obama’s mistake was a reflection of the negative images that still dominate disability in this country. The negative images are rooted in prejudice that comes from generations of exclusion, isolation, segregation and discrimination. To address the prejudice will take, not an apology, but a major policy shift and systems change. It will take a dramatic effort to include the voice and concerns of disability in all levels of government. Through his campaign comments, through policy statements, and through appointments he has made, President Obama has hinted that a major shift could become a reality under his administration. In fact, just before his appearance on Leno, at a town hall meeting in Los Angeles, Obama illustrated that hope, answering a question on disability not in the traditional “special needs” manner, but with language of inclusion, integration, and participation. But to this point progress has been little more that words and policy statements. That is why Obama’s appearance on “The Tonight Show” was so devastating. It forced those who believe that change might be a reality to ask themselves, “What, if anything, has changed? What, if anything, will change?”

Wednesday, March 11, 2009

Sing out loud

On Monday, March 9, a group called the Public Square hosted a lecture by Peter Singer, a professor of Bioethics at Princeton University. The event took place at the International House on the University of Chicago Campus. Singer's lecture was titled "The Life You Can Save"; the title echoes his latest book (THE LIFE YOU CAN SAVE Acting Now to End World Poverty), in which Singer argues that individuals who are economically comfortable, or safe, in developed countries should do more, and have a responsibility to do more, to help end poverty and starvation in developing countries.

Many people, both university students and community members, attended the lecture, but not everyone was interested to hear about the new book. Five disability rights activists also showed up to remind the audience, or to inform the audience, that Singer is not always in support of saving lives.

Within the disability community, Singer is well-known for his argument that parents should have the right to kill a severely disabled child within the first month of birth. Though I am no Singer scholar(I've barely read anything of his) it seems that in terms of the issues he endorses, he applies a litmus test of suffering. If it is within our power, we should do all we can to end suffering. This applies to animals (Singer wrote a book called Animal Liberation in 1975), to people who face starvation and poverty, and to people with severe disabilities. In the case of people with severe disabilities, according to Singer, if there is no hope to reverse the disability, parents should have the option to kill the child.

A disability advocate stronger than myself could find scores of problems with this argument; I'll just identify two problems. First, a lot can change within the first month of birth. I know several people, both within the community of people of short stature and within the larger disability community, who were issued terminal diagnosis just after birth. Doctors told their parents, "Your son (or daughter) won't live more than a year (or two or ten)." These people went on to live long, productive lives. So, there is no way to project a diagnosis within the first month, or within the first year. Plus, all of us within the disability community, no matter what the disability, have the opportunity to live productive lives given the right supports and opportunities.

The fact that all people with disabilities have the chance to live productive lives leads into the second problem with Singer's argument. Singer argues that a child with, for example Down Syndrome, will never have the chance to develop into an accomplished athlete, or musician or economist. Because there is no chance to develop into an accomplished person, the lives of people with severe disabilities are less valuable. The problem here is that we have a person not familiar with the disability community projecting values onto the disability community. There are millions and millions of people with disabilities who are adults who, if given a chance, would not change one thing about their lives, including their disability. If there is no way to reverse a severe disability, that's okay. When it comes to quality of life, there is no way that a person without a disability, even a very smart person like Peter Singer who otherwise has some pretty good opinions, should pass judgement on disability.

So, on March 9, five disability activists traveled down to the University of Chicago campus. Positioning ourselves to meet the audience as it arrived, three at the west entrance of the International House, and two at the east entrance, passed out fliers with information about Singer's view on disability infanticide.

Who knows who read the fliers, and what difference we made, but if someone reconsidered their views, or asked a question about Singer they otherwise may not have, that's a success. Perhaps that thought alone is cliche. But when genetic clinics with the technology to screen embryos refuse to implant an embryo that carries the gene for dwarfism, and when couples terminate pregnancies after learning their fetus carries dwarfism, every step we take to question and broaden our views on inclusion, tolerance and acceptance, the better.

For more about Singer and his new book, click here

For more about disability response to Singer, here is an article from the New York Times Magazine, chronicling a meeting and debate between Singer and disability activist Harriet McBryde Johnson.