• 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).

    McElroy Archives

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