Disability Must Be Defined Before Debated

The heart-wrenching death of Terri Schiavo has made the issue of disability a matter of debate. Discussions range from living wills to analyzing the quality of a disabled person’s life.

Two questions should lay the foundation for any deliberation: What does it mean to be disabled? And how should “normal” people react to those with disabilities?

What it means to be disabled is the focus of a controversy in the Midwest that has attracted national coverage in Sunday’s Washington Post.

In early March, Janeal Lee, Ms. Wheelchair Wisconsin, was stripped of her title because of a newspaper photo that showed her standing. Lee, who has muscular dystrophy, uses a scooter for mobility but teaches part of her high school math class on her feet. Before entering the pageant, she explained to the pageant’s state coordinator that she was able to stand for 10 or 15 minutes “on a good day.”

Now the de-crowned Lee states, “I’ve been made to feel as if I can’t represent the disabled citizens of Wisconsin because I’m not disabled enough.”

In protest, the first runner-up has refused to accept the title. On April 4, Ms. Wheelchair Minnesota –who is Lee’s sister and also has MS – relinquished her own crown.

Jen Onsum, Ms. Wheelchair Minnesota 2003 and the pageant’s Minnesota state coordinator, has stepped down.

Yet their protests are not being heard by the pageant’s national organization.

“…you’ve got women who are in their wheelchairs all the time and they get offended if they see someone standing up,” explained Judy Hoit, treasurer of the national Ms. Wheelchair America. “We can’t have title holders out there walking when they’re seen in the public.”

Onsum responds: “What about offending those who are in wheelchairs who can walk? I guess that does not matter. I’m actually offended by her comment and I’ve never been able to walk.”

The controversy might be dismissed as an unsavory and transitory flap were it not for the fact that the definition of “disability” is an ongoing debate within the disabled community and among its advocates.

Boston Globe columnist Cathy Young has commented on one extreme aspect of the debate. She writes, “They don’t simply seek dignity and access but define themselves as an oppressed minority, turning disability into a cultural and political identity.”

Thus, the now-deceased Christopher Reeve was severely criticized by some disabled advocates because he actively sought to “cure” his paralysis rather than accept his disability.

I’ve had reason in my life to answer the questions “what is a disability” and “how should I react”? Because my grandmother contracted German measles during her pregnancy, my mother was born with a malformed arm that ended in a claw-like appendage where most people have an elbow.

At first, I didn’t know my mother was handicapped. She was just my mother: an attractive, smart woman who ultimately supported two young children after being widowed.

It was the attitudes of other people that made me aware of her disability. Not that people expressed hostility or disgust; they were usually awkward, too helpful or furtive in their glances.

I came to define “disability” in what I believe is a neutral and common-sense manner. Since the term has meaning only with reference to what is “normal ability,” I define it as any deviation from the physical or psychological norm that is significant enough to impair function.

By my definition, disability is a sliding scale. How people react to “the disabled” hinges on where that person falls on the scale. An extreme disability often makes people uncomfortable perhaps because it connects to their own fears of infirmity. I saw this discomfort in people’s response to my mother.

In turn, she reacted with a combination of social paranoia and combativeness. For example, she insisted on calling herself a “cripple.” The un-PC term reflected a stubborn lack of self-pity and a need to commandeer the word so it wouldn’t be used by others.

Simply growing up taught me how to interact with disabled people. Namely, treat them like the human beings they are. Deal with them as equals, not like children with whom you adopt a different tone of voice or personality.

The worst approach is to treat a disabled person as if he or she were the disability, as if a physical characteristic defined their entirety. My mother was not her deformed arm; she viewed those who treated her as such with contempt and fear. She would have spit in the eye of the Ms. Wheelchair Wisconsin State Coordinator and, then, gone home to hide.

My definition and experience of disability may not hold true for everyone…or even prove useful to them. Moreover, the political implications of my approach to “the disabled” may not be popular because I do not favor special legislation or the creation of a separate political category. I believe the disabled are best served by an aggressive recognition that they have the same rights to person and property as anyone else. No more, no less.

But that explosive opinion is fodder for another column.

The purpose of this one is merely to provide the prerequisites of further discussion: that is, definition of the issue and a reality check of my experience.

April 14, 2005