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Nation Topics - Disability Rights Movement

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Terri Schiavo's life and death raise issues of acceptance, equity and rights.

Disabled people march on Washington to protest policies that keep them out of sight, out of mind.

More than thirty years ago, in an essay called "Uncle Tom and Tiny Tim:
Some Reflections on the Cripple as Negro," I suggested that cripples
emulate the civil rights movement by focusing on political solutions to
the problems of living under difficult physical conditions. (It's a lost
battle, but I continue to prefer the term "cripple" to the bland "disabled.") The problems cripples faced seemed as much the result of our inability to
define our needs as they were the fault of a society quite willing to
live with its ignorance of those problems and quite willing not to see
us at all unless absolutely forced to. It wasn't until the late 1960s
that cripples began to believe that they had the right to demand that
America meet their needs.

Anyone who has spent significant time living with a serious physical
condition probably has had an experience similar to the following:
entering a restaurant with another person, he (or she) finds that the
waiter is addressing not him but the person he is with. He is a
category, and categories are simply assumed to be unable to take
responsibility even for something as minor as placing an order. Yet even
such infantilization can seem liberating if the cripple realizes that
the problem it bespeaks is political rather than psychological: One
infantilizes the other by assuming attitudes held by society at large.
And this process is something that the cripple, too, is encouraged to
do. Even Randolph Bourne, as tough a social critic as America ever
produced, looks inward in his famous essay "The Handicapped," published
back in 1911. Writing about other issues, Bourne understands that
political problems demand political solutions. But when it concerns the
cripple, among whose ranks he was numbered, he was curiously
inner-directed and soft.

The demand for the rights of cripples was already under way as I was
writing "Uncle Tom and Tiny Tim." And while I would be happier without
much of the rhetoric of the Disability Rights Movement, to its credit,
it has helped change the consciousness of those who must confront the
world with physical disabilities. Both its success and its burgeoning
political potential seemed wishful thinking in 1969, when I still
dismissed its prospects. But that success was confirmed with the
enactment of the Americans With Disabilities Act in 1990. Despite its
admitted weaknesses, few Congressional acts more deserve the term
"landmark legislation." The Americans With Disabilities Act promised
those forced to live with severe physical impairments the possibility of
legal if not functional equality. Its most profound accomplishment, even
allowing for the vagueness of definition that has come to haunt it, was
to accept the idea that cripples have the right to specific
accommodations that meet their employment needs. For a population
battling the indignities of permanent illness, its promise was
comparable to that of the Civil Rights Act for African-Americans in
1964.

Twelve years after its passage, that promise seems about to be swamped
by a legal system in which what constitutes a workplace disability is
undefined and perhaps undefinable. The confusion about what would seem
to be the most elementary of definitions--what is meant when we speak of
a disability--threatens to weaken if not make the act virtually useless.
The cripple's demand for rights still commands a good deal of public
interest and a degree of public sympathy. Yet the Americans With
Disabilities Act has not led to widespread political activity on behalf
of the nation's cripples. Their quest for equality is not only
threatened with that most severe of American sins, being relegated to
political unfashionability, but the question of what a disability is
shows few signs of being resolved in favor of those whom the act was
supposed to help. Recent Supreme Court rulings in which disability was
ill defined must be seen as setbacks for those who look to the judiciary
to enforce what the act called for, a policy of accessibility and
inclusiveness. The Court ruled in April by a 5-to-4 majority in US
Airways v. Barnett
that US Airways' seniority system took precedence
over the right of a disabled worker to transfer to a more suitable job.
In Toyota Motor Manufacturing v. Williams, the Court ruled
unanimously that the definition of disability must mean substantial
limitations on abilities "central to daily life," not just the job. And
the Court also unanimously held, in mid-June in Chevron U.S.A. v.
Echazabal
, that employers had the right to refuse to hire a worker
whose health they believed might be impaired by performing a particular
job.

For this alone Ruth O'Brien's Crippled Justice is a welcome
addition to the literature on living with disability. A professor of
political science at the City University of New York, O'Brien approaches
her subject armed with an analytical perspective nurtured by her earlier
work. Her first book, Workers' Paradox: The Republican Origins of New
Deal Labor Policy, 1886-1935
, already reflected her interest in the
subject of workers' rights. Yet even academic inquiries can be rooted in
personal experience. "Had I not sustained what is now a ubiquitous
workplace injury," she writes, "a debilitating case of bilateral
tendinitis in my hands and forearms, I might never have explored the
development and implementation of...disability policy." Yet the focus of Crippled Justice is neither
personal nor anecdotal. It is a serious inquiry into the history of
public policy as that policy has affected large numbers of men and women
crippled by illness, accident or birth. As serious scholarship is
expected to be, it is factual and analytical. The past few decades have
witnessed a rich expansion of memoirs and essays by writers forced to
struggle with their own physical or mental deterioration, books that
depict what life is like for those who must live it with severe illness.
But the kind of political analysis O'Brien offers in Crippled
Justice
is what, I believe, cripples need now.

Analysis demands perspective, particularly when it begins in personal
experience. While bilateral tendinitis may not have the same sort of
consequences as, say, pushing through life in a wheelchair or trying to
earn a living as a blind person, the experience limited O'Brien's normal
ability to function. It turned her temporarily from normal to cripple.
And however temporary an experience, it was also sufficiently
dehumanizing to give her a strong sense of what life is like for those
forced to live with more severe conditions. The first discovery one
makes on entering the shadowy world of cripples is that one no longer
defines need, ability and ambition for oneself. The experience of living
with disability forced Ruth O'Brien to recognize that the cripple must
"struggle over the same issues that women and minorities battle." But
she also saw that the problems cripples faced were in some ways less
soluble and in others more mechanical than the problems of other groups.
Nothing would be more beneficial to cripples as a group than a fantasy
I've held for the past decade--a law that would make it mandatory for
every elected official in the country to live a single week each year as
a cripple.

If nothing else, that would show that the problems involved are as
political as they are psychological. And that is why I am grateful that
Crippled Justice restricts itself to the conditions cripples
confront in the workplace. To the writer, physical disability offers a
personal confrontation. And as is the case with writers, that
confrontation is about language. But what the cripple confronts in the
workplace, as O'Brien shows, are confrontations that have solutions. And
those solutions are political. What she tells us about the history of
disability policy in the workplace may not be as powerful or as dramatic
as, say, Andre Dubus writing about the changes that were imposed upon
his life by the sudden transition he underwent from being a normal man
to being wheelchair-bound. Nor does Crippled Justice offer us the
savage honesty of Harold Brodkey writing about his own impending death
from AIDS. O'Brien's focus is more mundane, which is to say that it is
more political: She is interested in the possibility of a meaningful
work life for those who lack the talent of a Dubus or a Brodkey.

We do not, of course, read memoirs and essays to create public policy
but to recreate individual lives. Yet if the experience of being forced
to live as a cripple is invariably personal, the reality of how
one lives that life is invariably political. I have no choice but to
accept being in a wheelchair. On the other hand, the New York through
which I push myself has any number of choices in how it reacts to my
need for that wheelchair. It is able to define how I live, what is now
subsumed under that horrendous phrase "quality of life," through the
public policy decisions it makes. Such seemingly trivial items as the
condition of the streets through which I push speak less eloquently but
more truthfully of what is or isn't possible for me than Dubus's essays
or my own essays or Nancy Mairs's essays. Public policy defines the
boundaries of the cripple's life. Mundane issues such as the condition
of the streets and the accessibility of restaurants and stores and
theaters (and how the Court defines disability) speak to the cripple's
ability to live with dignity.

The first half of Crippled Justice offers a historical overview
of the rehabilitation of the cripple in America. The ideas dominating
medical and social policy after the end of the Second World War in 1945
were largely formulated by two physicians, Dr. Howard Rusk and Dr. Henry
Kessler. (War may be unhealthy for children and other living things, but
it has done wonders for the fields of prosthetics and rehabilitation
medicine.) Rusk and Kessler are among the villains of the book, since,
along with Mary Switzer, the federal bureaucrat responsible for the
Vocational Rehabilitation Act of 1954, they created models of
rehabilitation still largely followed today. From Freud and even more
from William Menninger, rehabilitation medicine was inspired to shift
its focus from the need to treat the cripple's physical symptoms to the
need to treat the whole person. And the models were psychological.
O'Brien describes "the deep strain of individualism in American
liberalism" as the source of the mistaken path rehabilitation medicine
took. Yet I am not convinced that individualism is so negative in the
life of the cripple. No one can overcome the effects of disability
through mere willpower or a well-developed work ethic--but a
well-developed sense of self helps if one is to be a "success" as a
cripple. One might even suggest that the successful cripple must combine
a free-market head with a socialist soul. Perhaps more than others do,
he needs to see himself as singular. After all, what else can account
for all those memoirs about the singularity of the experience of
disability? The best passage I know about living as a cripple--as moving
to me as Shylock's "Hath not a Jew" speech--wasn't written by a cripple
but by a healthy Saul Bellow at the height of his powers. Put into the
mouth of the poolroom entrepreneur in The Adventures of Augie
March
, its power derives from how it speaks for us cripples as it
speaks about Einhorn's aching sense of his individual quandary.

O'Brien is on more solid ground when writing about how Rusk and Kessler
expected the "sick" individual to "adjust" to what they viewed as a
"healthy" society. The cripple unable to make the adjustment was a
social and psychological problem. Even so, one can argue that the
individualism O'Brien finds irritating is the cripple's best chance to
find salvation. Ambition should be made of sterner stuff than turning
all problems into psychological barriers. At the same time, the desire
to get even with an unjust fate shouldn't be dismissed lightly.
Liberalism may have a lot to answer for where attitudes toward the
cripple are concerned, but excessive concern with individualism is not
the biggest item on that bill. Still, the psychologizing of disability
was a mistake for which we continue to pay a price. And it remains, I
believe, the source of the Court's restricted vision of workplace
disability.

The conditions cripples face in the workplace cannot be conquered by
their adjusting to normal society but by society making certain minor
but necessary adjustments to their problems. By the 1970s the
psychological definition of the cripple had already shown how limited it
was. But is it better to define the cripple legally? Despite its immense
promise, the Americans With Disabilities Act is, as O'Brien writes, "an
idiosyncratic body of law." Where once cripples had to convince the
world of their ability to meet standards set by normals, they are now
expected to meet thresholds of disability set by a Court that seems
oblivious to the obvious. When the issue is as clear-cut as it was in
the case of the golfer on the PGA Tour, Casey Martin, whose bone
deterioration made it impossible for him to walk the links although it
didn't prevent him from playing golf, the courts seem willing to allow
the spirit of the original act to serve as its definition. But even that
makes the judiciary our "modern-day experts of vocational rehabilitation
because of the idiosyncratic nature of disability." The Court has not
yet claimed the right to define whether an individual is or is not a
cripple. But by insisting on its right to define what constitutes
disability in the workplace, it has assumed the power of defining what
the consequences of being a cripple are. As far as work is
concerned, cripples "have gone from being subjects of medicine to
subjects of law." Whether this is an improvement over the psychologizing
of disability is certainly open to question. The conclusion of
Crippled Justice is not despairing but it is skeptical. And for
good reason. In a valuable study of workplace disability as both a
political and social issue, O'Brien has performed a service to anyone
interested in social justice. Unfortunately, recent Supreme Court
decisions threaten to make her skepticism the book's lasting legacy.
Whether defined by the judges or doctors, it seems to be the cripple's
fate to be defined as the other.

The Supreme Court has made a decision that is wrongheaded, and wrong.

Blogs

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December 11, 2012

Repealing Obamacare would make it impossible for many people with disabilities to join the workforce. 

November 1, 2012

In the second presidential debate, Governor Romney used the word poverty without saying anything of substance about it. President Obama didn’t use the word at all but managed to talk about issues that matter to low-income people.

October 19, 2012

A great day for people with disabilities.

September 2, 2011

Press coverage of a young man thrown out of his wheelchair during the UK student protests suggests that "real" disabled people are not whole human beings.

December 19, 2010