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Crip Commentary:

Laura Hershey's Weekly Web Column
Updated on August 11, 1998

Who Profits from Disabled People's Poverty?

Copyright 1998 by Laura Hershey [[log in to unmask]]

Within the disability-rights movement -- at least among some
grassroots, outside-of-Washington activists -- more and more
attention is beginning to focus on issues of economic justice.
Many of us are becoming convinced that the key to our liberation
lies not merely in "changing attitudes," but in critiquing and
ultimately restructuring the economic system which keeps us
financially poor, politically disenfranchised, and socially
marginalized.

Despite the passage and sporadic implementation of the ADA, our
unemployment rate has soared to an all-time high.
Subsistence-level benefits are threatened with cuts, as
right-wing zealots seek to transfer more resources from the poor
to the rich. We often have to fight for basic health care.

As a community, people with disabilities are becoming poorer and
poorer. This is bad news for those of us who are part of that
community. But it's good news for those who grow rich by
providing "services" designed to compensate for, and maintain,
our poverty.

These people and organizations, these profiteers of dependency,
are part of a massive Disability Industrial Complex -- a
haphazard but potent network of both for-profit businesses and
non-profit agencies which cash in on the "special needs" of
people with disabilities. It includes our nation's systems of
segregation and exploitation -- nursing homes, sheltered
workshops, state institutions, segregated schools, and
psychiatric hospitals. It also includes home health agencies,
medical supply companies, transportation systems, large-scale
supported employment providers, case management agencies, and so
on. It includes the medical charities, such as the Multiple
Sclerosis Society, and the Muscular Dystrophy Association
(sponsor of the upcoming Jerry Lewis Telethon). These charities
raise money "to help disabled people" -- money which most often
enriches organizations controlled by non-disabled people,
including pharmaceutical companies, research hospitals,
corporate fundraising partners, and the charities themselves.

The Disability Industrial Complex also includes many of the
well-funded advocacy organizations which have established
themselves as representatives of the disability community. Too
often, these organizations' high profiles result more from large
budgets, clever advertising, and backroom political clout than
from their commitment to, or their knowledge and experience of,
real people and real disability issues.

Many of the so-called "special needs" targeted by disability
service and advocacy providers are caused by our poverty, not by
our disabilities. We could meet most of our real needs
ourselves, without the intervention of professional do-gooders,
bureaucrats, and gatekeepers, if we had adequate income and
resources. Instead, we are held captive to the Disability
Industrial Complex, which decides what's best for us, and how
best to provide it. Nationally, these providers generate
billions of dollars in revenues, as their reward for "helping"
people with disabilities. Our "needs" fuel a huge sector of the
U.S. economy. But, through a variety of mechanisms, policies,
and rules, all -- or most -- of that revenue is kept carefully
out of our hands.

Money makes the disability-service world go round. All that
money swirls over, under, and around people with disabilities,
but rarely can we get hold of much of it for very long. It
enriches primarily people who are nondisabled, and already rich.
It maintains a middle level of middle-class (also mostly
nondisabled) service providers. But it scarcely touches people
with disabilities themselves. If anything, it makes us poorer,
by perpetuating our status as unemployed, welfare-dependent,
service-dependent clients. The dollars flow through us, but not
to us.

Martin Luther King, Jr., said, "Philanthropy is commendable, but
it must not cause the philanthropist to overlook the
circumstances of economic injustice which make philanthropy
necessary." That's what has happened to people with
disabilities: Charity has replaced economic justice.

So, how can we turn the tables, and reclaim the wealth that's
meant to "serve" us -- the wealth that, instead, enriches
providers who do not have our best interests at heart? Below are
a few revolutionary proposals designed to do just that. Can the
disability-rights movement get behind these ideas? We'll see...

Proposal #1: Demand that a portion of every disability agency's
budget go directly to people with disabilities, through a system
of contract set-asides. All agencies, public and private, should
adopt policies mandating that for any large purchase or
contract, the person responsible must make every effort to do
business with a company owned by a disabled person. Does the
agency need to buy stationary? hire a web designer? make travel
arrangements for a large conference? contract with a script
writer for a training video? For all of these services, and
more, there are business owners with disabilities who are
struggling to make a living. Rather than automatically doing
business with nondisabled professionals, disability-service
agencies should give preferred status to disabled-owned
businesses.

Proposal #2: Every disability agency, public and private, should
have an affirmative action program to maximize their hiring of
employees with disabilities. Far too many disability
organizations are staffed and controlled almost entirely by
nondisabled people. Can you imagine going into the office of the
National Organization for Women, and finding that men are in
control? Or finding that the administration and staff of the
NAACP are all white people? Both scenarios are inconceivable;
yet the equivalent situation is commonplace in the disability
field. This must end.

Some people might oppose these last two proposals, calling them
"reverse discrimination." That misses the point entirely.
Throughout history, people with disabilities have been
systematically excluded from business and employment -- both in
the general economy, and in the disability-service sector.
Radical measures are needed to remedy that pattern of blatant
exclusion and discrimination, which continues to this day.

Proposal #3: The United States should adopt a universal health
care system which includes coverage both for medical care, and
for the kinds of para-medical and non-medical supports that
people with disabilities need in order to function independently
and equally in society. Such a health care system should not be
linked to employment. It should be available to all, regardless
of employment or economic status.

Proposal #4: In order to help fund Proposal #3, stop using
government funds to subsidize the charity sector of the
Disability Industrial Complex. This is suggested by
writer/activist Marta Russell in her new book, Beyond Ramps:
Disability at the End of the Social Contract. Russell writes,
"The nation needs to eliminate tax-free charity status, return
the lost revenues to a democratic government to redistribute
wealth in a democratic manner. That after all is what
Constitutional 'promoting the general welfare' is all about."

I suspect that all of the above proposals will be controversial.
But unless we confront the many ways that people with
disabilities are impoverished, while others grow rich at our
expense, we will never attain the equality that the
disability-rights movement claims to be about.

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