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 . . .
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
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
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
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.
(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
(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.