Ninety years ago the Washington Post asked, “Who are the unfit?” and then answered its own question by noting that the unfit tended to be anyone not belonging to the particular group conducting the discussion. Since then, of course, a lot of people have come "under discussion". It is difficult to estimate the exact number. It depends who is doing the discussing.

If, for example, those "under discussion" include only those designated as unfit by, say, the Nazis, the Pol Pot regime, and the janjuweed, then we would be talking about a certain number of millions. If, however, we choose to include others who did not always "fit" into the range of desirability of dominant cultures at various times and places - say, indigenous peoples, gays and lesbians, Turkish Armenians, and targeted peoples in the Soviet Union, Rwanda, China, and the Middle East - the number under discussion would be quite a bit larger. And were we to include in the peoples of interest those groups that have been under generations of intense psychological and political pressure to give up their “primitive” or “underdeveloped” or "unproductive" ways, the reckoning would be greater yet.

None of this would matter, of course, except that the question behind the question, "Who are the unfit?" has always been, "And what are we going to do about them?" (And the answer, far too often, has been "Get rid of them . . . somehow.")

Remarkably, there have always been designated candidates for victimhood who resisted the outcomes that others had in mind for them. Some, like Eli Wiesel (1) and Ward Churchill (2), went on to write extraordinary books about the fierce resistance-to-being-gotten-rid-of experience. Whether their accounts moved us to tears or to shame or to rage, or whether they simply inspired us or prodded us to deeper thought, they always managed to clarify for their readers the high cost of falling for other peoples' ideas of ‘fitness.’

Recently, several more major books have been added to the resistance genre. Some are by and about a group that practically defines "unfitness" for most of us: the “disabled”. There is no way of knowing how many of “them" may have come "under discussion" over the years - or, to use another euphemism - how many may have been placed "under treatment." If we tote up all the euthanized “aged”, the institutionalized and forgotten “mentally ill”, the aborted “imperfects,” those destined to age and become infirm – not to mention, those who choose to ignore the advice of the post-humanists and the temptations of "enhancement"- the numbers might well be staggering. (3)

Whatever the numbers of those not yet old, not yet dead, and not yet committed to enhancement, there is a perspective among those deemed “disabled” that might surprise many of their would-be caretakers and fitness advisors, particularly those who may have paid little attention to what happened recently at Gaulladet University, or who may have been unaware of why Terri Schiavo was a cause celebre among crip activists. (4)

Like "fitness" resisters before them, the authors of Defiant Birth, Women Who Resist Medical Eugenics, and Too Late to Die Young, Nearly True Tales from a Life when faced with other people's intentions for and judgments about them, refuse to submit. Instead, with a little help from their friends, they create their own versions of lives well-lived. Difficult lives, surely, but well-lived ones. These are not biographies of well-known super-crips, like Helen Keller and Stephen Hawking and all the celebrated, super-extraordinary-but-disabled others. These are books about people less well-known but no less worthy of our attention.

Defiant Birth is a collection describing women who continued their pregnancies despite the advice of others. The editor, Melinda Tankard Reist, surrounds nineteen personal narratives by women from Australia, Canada, and the U.S. with her own chapters about the eugenic pressures that emanate from medicine, technology, and mainstream society. The nineteen stories Reist includes are by women who faced the judgments of others - often medical professionals - about the quality of the fetus they were carrying or the quality of themselves as would-be mothers.

These are women who opted to keep their babies and to welcome them, no matter how potentially strange, unfamiliar, or short-lived. In some accounts, the dire predictions of others turned out to be true; in others, they did not. Whatever the political axe one might suspect was being ground by the selector of the stories, each mother clearly finds joy and meaning in her newborn's life. These are not people seeking approval or wallowing in victimhood. As Teresa Streckfuss insists in the third chapter, “...(D)on’t pity us for carrying a child we know will die...Grieve for the fact that our baby will die. We wouldn’t wish away the time we had with Benedict,. . .just to save us the pain of losing (him). . . Someone asked us after Benedict died, ‘Was it worth it?’ Oh yes! For the chance to hold him, and see him, and love him before letting him go. For the chance for our children to see that we would never stop loving them, regardless of their imperfections? For the chance to give him everything we could? Oh yes!”

The stories, as Abby Lippman, board chair of the Canadian Women's Health Network, points out in a cover blurb, "challenge our general notions of what is a 'good' mother, and what makes for a 'happy' baby. They lay bare how simplistic - even dangerous - are offers of 'choice' when society limits the childbearing options for women and judges anyone less than 'perfect' as disposable."

Another book, Too Late to Die Young, carries much the same message but was written by a much lighter hand. Unable to walk, bathe, or dress herself since birth, Harriet McBride Johnson manages to engage the reader in a witty picture of her own seemingly less than perfect life. She is not the loving mother finding value in the short life of her child; she is the child herself, living a life longer, fuller, and much more wicked than expected.

Whether she is the lawyer arguing a case in a Charleston courtroom, or the activist rolling down the bumpy streets of Castro era Cuba, she is both funny and convincing. Whether she is the local politico seated behind the bigger, more important political butts at the Democratic National Convention in Chicago, or the woman meditating in her bed about the pleasures of the flesh, or the brilliant crip contributor to the New York Times Magazine debating her own right to life with a Princeton academic who "thinks the humans he is talking about aren't people, aren't ‘persons'," she comes off as someone you want to know better.

She refuses to be merely inspirational. She is determined to enjoy life. Nevertheless, she rarely neglects a teachable moment, as when she brags that she is the proud holder of the world endurance record for protesting the insufferable pity-mongering of the Jerry Lewis telethons. Warts and delightful all, Harriet McBride Johnson is herself proof of what can happen when people resist the assumptions and stereotypes of others and refuse to be dis-abled.

Among disability activists, there is a slogan: “Nothing about us without us.” The slogan reflects a determination to end the centuries of paternalism that has characterized treatment of the disabled. Harriet McBride Johnson takes us into the landscape of that slogan's vision of self-determination by offering up the details of her own life. She ends her book saying: "I believe that living our strange and different lives, however we choose and manage to live them, is a contribution to the struggle. Living our lives openly and without shame is a revolutionary act." The mothers in the Reist book would agree.



                                                             Notes

(1) See, for example, Wiesel's Night, New York: Hill and Wang, 2006.

(2) See, for example, Churchill's A Little Matter of Genocide: Holocaust and Denial in the Americas, 1492 to the Present, San Francisco: City Light Books, 1997.

(3) For a disability perspective on new and emerging technologies, see the writings of Gregor Wolbring. His articles are available on the Internet at http://www.bioethicsanddisability.org/articles.htm

(4) The resistance perspective among the “disabled” is not a new perspective. For earlier works, see, for example, Marta Russell, Beyond Ramps: Disability at End of the Social Contract, A Warning from an Uppity Crip, Monroe, Maine: Common Courage Press, 1998.


Beth Burrows directs the Edmonds Institute, a small public interest organization focused on environment and technology and headquartered in Edmonds, Washington.