Mouth asks,
How would you
characterize the federal enforcement of our
ADA?
Marca
SAYS
It's
as if we have been using a hammer when we need a
sledgehammer.
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an interview with Marca Bristo
by Josie Byzek
photographer unknown
This interview first appeared in Mouth magazine in
September, 2000.
Marca Bristo is
chair of the National Council on Disability, a post to which
President Clinton appointed her in 1993. The Council reports
to the President and to Congress. This year the Council has
produced three groundbreaking reports, including "Promises
to Keep: a Decade of Federal Enforcement of the ADA." Bristo
was a rounder of, and currently directs, Access Living, the
Center for Independent Living in Chicago.
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Voluntary
compliance only goes so far. Deeply-rooted patterns of
discrimination require both a carrot and a stick.
If
there's no consequence for violating the law, people will go
on violating it.
Remember
how you felt when the Americans with Disabilities Act was
passed? Latch onto the vision you had then of what our world
would look like when the ADA was fully implemented. That's
it. That vision is what should be going forward now.
Tim
Cook warned us, back in 1991. Years before, he had seen us
celebrate Section 504 [after an historic sit-in forced
the Carter administration to issue regulations for it].
He cautioned us not to rest on our laurels because 504 was
never seriously enforced. It was allowed to shrivel up, and
almost be worse than if we'd never had it in the first
place.
Tim
said then -- and I consider this to be a gift he left for me
-- that if we did not enforce the ADA 'root and branch,' as
Congress intended, as all civil rights laws must be
enforced, we would look back at the ADA in twenty years and
see that it had fallen into the hollows of
non-enforcement.
That
is what guided the Council [National Council on
Disability] in making our report: a deep commitment and
an awareness that later on we won't be able to turn back the
clock to when the law was new.
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What
could improve ADA enforcement?
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It
absolutely needs a sense of urgency, passion, and strong
federal leadership.
My
hope would be that the Department of Justice would sit down
seriously with this report, look at the parts of it that
they feel they can do something with, and develop an action
plan to respond to the recommendations.
We
are not naive. We do not expect that all of the
recommendations will be acted upon, and certainly not
immediately. What we do expect and hope is that the report
will generally be embraced as a road map for change.
A
lot of people have said that our report is too harsh, or
that we didn't give credit where credit was due. I regret
that people perceive it that way. I would rather that they
perceive the promise in the ADA, and the challenge to change
a lifetime of segregation, isolation, prejudice and
unwarranted stigma.
The
report calls all of us to action, not to settle for anything
less than the promise of the law. That's a tall order, and
requires all of us to step up our efforts. In the history of
civil rights implementation, to reverse a cultural pattern
endemic through the whole society, enforcement needs a sense
of urgency.
We
know that this report is coming out shortly before an
election. We hope that all the candidates -- not just for
president and vice president, but also members of Congress
-- will look at this as what the community cares about, what
we want them to do, now.
ADA
enforcement certainly isn't all that our community cares
about, but it is, unquestionably, one of the top priorities.
Candidates should be able to look at this report and
understand that a commitment to this will resonate
positively with the disability vote.
Congress?
I hope that our members of Congress will understand that if
they're serious about affording people with disabilities
equal opportunity, they'll have to put their money where
their mouth is.
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What
outcome do you expect in the upcoming Garrett
case?

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All
of us are anxious about that -- as we should be.
I
do hope that our Supreme Court will pay careful and close
attention to the congressional record, to the findings of
the ADA, to the extent to which people with disabilities
have been subject to egregious segregation, isolation,
discrimination and prejudice. If they pay attention to that,
I don't see how they could decide that the ADA which
Congress passed was unconstitutional.
Our
country said "No" to Jim Crow, to states rights policy, at
another time in our history. I can't believe that the Court
will not see the same here and act accordingly. Olmstead was
an enormous victory for people with disabilities. The Court
supported in that case the "most integrated setting" aspect
of the ADA. To have that taken away by arcane constitutional
arguments would force people back into the institutions that
last session's Court began to open up. I have to believe
that the Court will grasp that that kind of segregation is
similar to "Whites Only" water fountains. If theCourt grasps
that connection... What can be a greater deprivation of your
rights than being forced against your will to live in an
institution? Where you virtually have no rights at all?
If
the court grasps that connection, I'm still hopeful that
they will decide in our favor. If they don't, it's a sad day
for America, and should be a wake-up call for all people who
believe in equal rights and civil rights.
The
decisions coming out of the courts now will affect all the
future decisions for generations to come. That's why our
Council's report called for more vigorous leadership. When
the government has provided vigorous leadership, not one
hundred percent of the time, but more often than not, we see
good results.
It
is that somber sense of history that wants more, and calls
out for more.
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Are we
expecting too much from the states since the Court's
Olmstead decision?
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I'm
reminded of a Bob Kafka quote, because the Olmstead decision
and the entire ADA, is a tool.
Here's
what Bob said. He wrote it right after he left the signing
ceremony for the ADA.
'Is
this the ending or the beginning? This nagging question
lingered in my mind on the trip back to Texas. I realized
that the ADA could be the beginning of a new era in equality
for people with disabilities, if we used it aggressively and
in concert with other strategies like direct action
organizing.'
This
is the part of what he said that I want you to really listen
to: 'If we believe that ADA is the power, and we are the
recipients of its strength -- rather than that we are the
power and ADA is a tool for us to use -- I fear we may still
have a long way to go.'
That's
what I'm wanting to say here on Olmstead. That ruling was a
tool. HCFA has given us other Olmstead tools in subsequent
communications to the states, but the real power still has
to be wrested from the institutions. Not by the law, but by
disabled people. If we forget that, then our civil rights
laws will remain unenforced.
That's
how I like to think of our laws. That they are legal tools.
To be sure they set a certain standard or mark.
But
we still have an awesome responsibility -- and opportunity
-- to make the laws work for us. If we don't, well, nobody's
going to do that for us.
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What
about the Equal Employment Opportunity Commission and its
enforcement of Title One?
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Our
report did point out that, unlike the Justice Department,
the EEOC has made use of subregulatory guidance and other
issuance of policy directives. For the most part, although
not entirely, those have been pretty good and have had a
positive impact.
Now,
nothing's absolute of course. There are other instances
where EEOC took a more muddled position, or a position that
we didn't agree with. In those instances they've
contributed, we think, to a narrowing of the definitions
under the ADA.
The
point here is, we believe that all of the enforcement
agencies would benefit from more regular, consistent and
meaningful involvement of disabled people. We advocate their
looking for ways to more consistently and regularly involve
people with disabilities.
That
would help illuminate what are those big emerging policy
issues where some guidance from the agencies could impact
the evolution of decisions coming through the Court... and,
therefore, further the goals of the law.
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Did you
know at the start how big a job chairing this Council would
be?
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It's
one thing to pass a law, another thing to get the law
implemented.
Even
more complex than getting the law implemented is figuring
out how you undo policy that's been driven for years in the
wrong direction, how to replace that with ADA-like policy, a
civil rights policy.
The
National Council on Disability was the birthplace of the
ADA, before my time. When I became chair, I knew that big
shoes had preceded me, that the ADA was a hard act to
follow. Very early on, before I was confirmed, I spent a lot
of time just talking with disability rights people I knew
and trusted. I asked them, 'What do you think the Council
ought to be doing?'
Pretty
much across the board, everybody said, 'Now we have the ADA.
The next two things are to get it enforced and to push the
values and principles in the ADA into the rest of public
policy.'
For
example, the way our health care system is set up, the way
our housing services are delivered, the way people get
shepherded into going on benefits rather than shepherded
into going to school, college and work. Reversing the old
bias in all of our government-supported programs and
policies is a tall order, a very tall order.
Disability
rights leaders, both in Washington and around the country,
said we need to take the principles of the law and breathe
them, push them into the rest of public policy. There was an
NCD 50-state tour to hear from disabled people whether and
how the law was impacting them.
From
the Dallas summit in 1996 and from the tour, we heard the
same thing: The ADA is a good law, but it's not being
implemented fully. We heard that we need more from our
government, for it to back us up, to make our civil rights
laws happen.
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The
Council doesn't seem to have taken much criticism for the
psych survivor report.
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No,
we haven't taken a lot of fallout.
But
you have to go beyond that. People who don't like your
mes-sage, they'll either have a harsh reaction, or they'll
ignore you.
I
have taken the absence of a strong reaction to mean that the
mental health field is denying it occurred, hoping it goes
away and, basically, marginalizing us as part of the 'fringe
element.'
What
I hope the report shows, on a philosophical level, is that
you can't marginalize us. If people really believe in the
values of the independent living movement, the values of the
ADA, then the voice of psychiatric survivors, what they're
saying, it fits right in there.
The
Council continues to work on trying to figure out whose
voices are really missing, and looking for ways to give
voice to those segments of our communities who we and others
have tended to leave behind. Like psychiatric survivors, and
people of color, people of diverse cultural backgrounds who
are usually covered by most of our laws but often are
inequitably impacted by them -- either because they don't
know about the laws and their rights or because they don't
have access to the services.
What
people have a tendency to do is say, 'Oh, my God, these are
crazy people. They can't take care of themselves.'
I
am a registered nurse and, when I was a practicing nurse, 25
years ago, I've been at the bedside of people having shock
therapy. I objected to it. I still object to it. To see our
country moving in the direction that the Surgeon General's
report advocated... fundamentally, something is wrong there.
There have to be other ways.
In
many respects, the parallels between how physically disabled
people and people with other disabilities reject the medical
model is the same. They're saying, 'Doctors aren't God, and
we, ourselves, have a really important role to play in
restoring ourselves.'
If
that contrast between the NCD report and the Surgeon
General's report fosters conversation and discussion, that's
a good thing. We hope our report enables activists around
the country to have an added tool as they fight policies
that would force not only institutionalization but force
treatment at home.
Would
you like it? During the hearings for this report, someone
said to me, 'We don't force people with AIDS to take their
medication, with people driving up to their homes and making
them take it. We don't force people with diabetes or
epilepsy to take their drugs.'
I
have a spinal injury from a 1977 diving accident. I have
also experienced a clinical depression of a very limiting
type. I struggle, as many people do, with chronic
depression. So I've always identified on some level with
psychiatric survivors.
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But the
myths are extremely powerful...
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Everybody
has to go through their 'aha' experience, where all of a
sudden you see something differently than you saw it
before.
The
psychiatric arena is where I think the nation will
eventually go through an 'aha' experience. I sure did.
That
experience came for me through the voices of survivors who
have begun to design a system that takes into account their
disability, but which also offers choice.
I
have never been institutionalized, and I needed to listen to
my friends who have been. People from the survivor community
dispelled the myths for me. The biggest myth, I think, is
that if they're not treated, people with psychiatric
disabilities are going to be dangerous. But when you look at
the research, they are not more prone to violence than their
non-disabled counterparts.
In
the mainstream disability community we talk about myths that
are part of the backlash and how you and I know they're
myths. I hope that the Council's report gives voice to some
of the facts and begins to help dispel some of the myths.
Those myths underlie the prejudice and stigma of psychiatric
disability.
In
all the Council reports, we hope that we have remained true
to our congressional mandate. That mandate is to bring
forward choice to people with disabilities and juxtapose the
"nothing about us without us" policy against the medical
model.
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You can
get your hands on the reports described here -- plus another
on Special Education and enforcement of IDEA -- from the
National Council on Disability, free. Order them at NCD's
website, or write to NCD, Suite 1050, 1331 F. Street NW,
Washington, DC 20004-1107.
Or
go to that award-winning website right now and download the
reports for yourself.
If you'd
like to go directly to the NCD Report on ADA Enforcement,
"Promises to Keep," here's
the link.
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