Disability Must Be Defined Before Debated

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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

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

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

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.

14, 2005

McElroy [send her mail]
is the editor of ifeminists.com
and a research fellow for The
Independent Institute
in Oakland, Calif. She is the author and
editor of many books and articles, including the new book, Liberty
for Women: Freedom and Feminism in the 21st Century

(Ivan R. Dee/Independent Institute, 2002).

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