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.



photo of Marca Bristo


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?

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.

What outcome do you expect in the upcoming Garrett case?

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.

Are we expecting too much from the states since the Court's Olmstead decision?

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.

What about the Equal Employment Opportunity Commission and its enforcement of Title One?

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.

Did you know at the start how big a job chairing this Council would be?

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.

The Council doesn't seem to have taken much criticism for the psych survivor report.

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.

But the myths are extremely powerful...

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.

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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cover of the September 2000 issue of Mouth