We Are Afraid to Talk About Disability

September 01, 1994|By EDWARD B. BENNETT III

NEW HAVEN, CONNECTICUT. — New Haven, Connecticut -- It is time to deepen our national conversation about disability. Four years ago, when the Americans with Disabilities Act was signed into law, everyone had a lot to say about the act's costs and promises. Business owners objected that the act would bankrupt them, and people with disabilities expected redress for decades of segregation and discrimination.

But since its passage, the Americans with Disabilities Act has left the public imagination. We conduct our conversation about disability in courtrooms. We should renew the discussion. Other prominent issues invite this conversation: Assisted suicide, health-care reform and attacks on integrated education all profoundly affect people with disabilities.

The common perception that people with disabilities are pathetic, suffering creatures lingers and poisons our efforts to speak candidly about disability. Silence is the result. Fear acts on us as well. Able-bodied and disabled alike, we are all afraid of certain questions. But we do not need to fear this conversation.

What do you want to ask us? What frightens you about people with disabilities? Why do you snatch your children away and tell them not to point or stare? How do we inspire you?

What do you think when we marry your children? When we become fathers? Do we have sex? How do we go to the bathroom? Can we speak? Are we capable of learning?

Do you think we would be better off dead? Is it worth it to spend scarce health-care dollars on disabled lives?

I can't satisfy all these questions, but I know that people with disabilities are eager to answer them. A few can be addressed briefly here.

The cost discussion must continue. Compliance with the Americans with Disabilities Act has not been costly. No major study has been released that details onerous costs imposed on businesses. The act does not require businesses to make costly accommodations. Our world is changing step by step, ramp by ramp, at a reasonable cost. In 10 years we'll look back and wonder what all the fuss was about.

The true cost is psychological, not financial. It is the cost of accepting us as we are, of understanding that we can contribute, and of eliminating the stereotypes that govern policy.

For the disability-rights act's promise to be realized, segregation must end. Separate seating in movie theaters, rear entrances by garbage cans, isolated seating at baseball parks -- all of these the act forbids. Separate is never equal.

Many able-bodied people still believe that those with disabilities lead a life that is not worth living. Many people have said to me ''I would rather be dead than paralyzed.'' We need to talk about why people believe this. We should talk about how the effort to legalize assisted suicide implicates people with disabilities. In many cases the effort to end life should be legally sanctioned, but we should make sure that we don't make people believe that their lives are not worth living just because they are disabled. We are better off alive.

We must turn to the health-care debate with great vigor. Members of Congress will be tempted to disregard the many cost- efficient health-care practices that could profoundly improve the lives of people with disabilities. As one writer put it, ''Is it worth saving a life if it is to be spent trapped in a motionless prison?'' People with disabilities must be careful that they are rationed in, not out, by health-care reform.

Some educators are attempting to roll back the educational advances made by people with disabilities. They argue that it is too difficult to educate children with disabilities alongside the able-bodied. Separate is equal, they argue. This is a mistake. In important ways, education is about socialization. People with disabilities need to be exposed to the able-bodied and their expectations. The reverse is true, too. Dialogue cannot take place if the two groups watch each other from afar in fear and hostility. If the classroom is segregated, education becomes rehabilitation with a report card.

Too often, people address the subject of disability without talking to disabled people themselves. We are left in the world of the third person. Last summer I traveled to Atlanta to speak on the rights of people with disabilities at the ACLU's biennial conference.

The flight attendant helping me board the plane immediately began speaking to my assistant rather than to me. ''How do we move him?'' he asked, gesturing with his head to ward me. I am not a ''him.'' People with disabilities need to be addressed directly and asked how they want to be a part of the responsibilities and opportunities of American life. The use of the third person promotes an uncomfortable distance between the able-bodied and the disabled. If we talk with each other directly, we can close that divide.

What can people with disabilities do to further this essential dialogue? First, we need to abandon our own fear of participating in it. We must see ourselves as whole and not let the expectations of others shape our sense of ourselves. We are not society's leftovers. Second, people with different disabilities need to work together not retreat to their particularized camps. Third, we need to tell people with disabilities that the Americans with Disabilities Act covers them. Many people with disabilities are not aware of its protections.

This conversation will be a profound, complicated and sometimes uncomfortable act of imagination, but if we gather the courage to talk we will be rewarded. The playing field will never be perfectly level, but a conversation about disability will help us build ramps to it.

Edward B. Bennett III is a Yale Law School student. He is the president of the Archimedes Group, a non-profit disability-information organization. He has quadriplegia.

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