Mouth
asks,
What's happened to
our rights?
Steve
SAYS
The
federal government has totally abdicated its
responsibility for enforcement.
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an interview with Steve Gold by Josie Byzek
photo by Tom Olin
This interview first appeared in Mouth magazine in
March 1998
Stephen F. Gold is
the foremost attorney in the disability rights movement. He
is co-author, with Diane Coleman, of the Not Dead Yet amicus
brief quoted in 1997's Supreme Court decision. As attorney
for Idell S. and Helen L., he sued and won against the state
of Pennsylvania on grounds of the ADA for segregating people
in nursing homes rather than providing them with attendant
services in their own homes. He was the attorney in the
Adapt v. Skinner public transportation case as well.
Gold is in private practice in Philadelphia,
Pennsylvania.
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What's the primary problem with
the Americans with Disabilities Act?
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People
don't know their rights.
I
am amazed at the number of people with disabilities who do
not know what the ADA says, or what the regulations say. I
frequently get phone calls from people with disabilities
from all over the country who do not understand what the ADA
says, or how to use it.
We're
talking now about seven years plus since its enactment.
That's frightening. The first thing that's got to be done is
massive education and advocacy training.
Second,
we have to help people enforce [disability rights
law] in every conceivable way -- from pro se complaints
to street demonstrations. You name it, we ought to be doing
it.
People
with disabilities have to be perceived as a powerful
political entity. With very few exceptions, that is not the
case.
I
would change the mentality of the disability community to
begin to say, 'We're going to get out there and enforce this
law.'
Like
any other law, if you don't enforce it, it's not worth the
price of a pretzel in Philadelphia.
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Why is the enforcement of the
ADA different from the enforcement of any other civil rights
law?
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The
ADA came about not after a vocal, visible, angry struggle
for civil rights. It came about because an elite group
thought it should be passed -- paternalistically, in other
words. Consequently, there was not equal power in the
passage.
The
Chambers of Commerce were able to get what they wanted into
it, and insurance companies got what they wanted. The movie
industry got what it wanted into the ADA, so that you don't
have open caption-ing in movies, or any alternate format.
The local government entities got their three cents' worth
in.
All
the powers that be in our society which clearly have been
discriminating in the past and are still discriminating,
they all got their ten cents' worth in, or more, during the
passage of the ADA, and people with disabilities just didn't
have the power to counter that.
The
ADA won't even pay for monetary damages for the injury done
when civil rights are violated. That's a humongously big
compromise on the ADA. I don't know another civil rights
statute where a minority whose civil rights are violated
cannot get damages for that injury. But the other thing
which is really critical is that the only entity that can
get damages awarded under the ADA is the U.S. Department of
Justice. And Congress even set very specific amounts that
they can get.
So
two things -- first, it's very paternalistic to set things
up that way. Second, and much more critical, is that the DOJ
can bring only a very limited number of suits.
We
know how backlogged they are, and they just cannot do what
needs to be done. If people with disabilities could get
compensatory damages when they sue under the ADA, even if
those amounts were minimal, that would make it worthwhile to
bring the suit.
Then
too, if the defendants knew they would have to pay not just
to make their store or restaurant accessible, but also to
pay damages, they would, on their own, make their businesses
accessible.
It's
as if the ADA is saying, 'If you break this law, the penalty
is that you'll have to obey it.
That's
not a big penalty.
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What's the best part of the ADA
itself?
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Just
starting right at the top [in the findings of the
ADA] Congress says, 'Historically, society has tended to
isolate and segregate individuals with disabilities, and
despite some improvements, such forms of discrimination
against individuals with disabilities continue to be a
serious and pervasive social problem.'
Those
findings should be used by people as a trumpet, as a
clarion.
Disability
rights are trivilialized by most people. They are not
considered civil rights. The fact that a person using a
wheelchair cannot get up two steps into a store is not
looked at as a violation of that person's civil rights. Or
the fact that people can't get on the bus. Or that movies
aren't captioned or that elevators are not brailled -- those
are not looked on as violations of civil rights. Those are
perceived by the public as inconveniences or technological
difficulties.
But
they are barriers to access and they are, by Congress's
definition, civil rights violations. Depending on which
label you put on them, a different consequence in our
society will follow.
The
congressional finding at the opening of the ADA, if used by
advocates, by people with disabilities, applies to so many
circumstances people face. What that congressional finding
does is make access a civil rights issue.
Congress
says, 'Individuals with disabilities are a discrete and
insular minority faced with restrictions and limitations,
subjected to a history of purposeful unequal treatment,
relegated to the position of political powerlessness in our
society.'
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But violators always say it
wasn't intentional...
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What
Congress found is discrimination in such critical areas as
access to services and access to public accommodations. That
made those two steps, that curb without a curb cut,
violations of civil rights.
Pre-1990
it might have been unintentional. But when Congress passed
the law, it became the law. Period.
Can
you imagine what this country would have been like seven
years after 1964 if we still had bathrooms marked whites
only and colored only? I mean, that's segregation, and
that's separation, the bathrooms and the water fountains.
It's historic. Back in the Fifties, they'd say they weren't
discriminating, that's just the way things were!
When
Congress in 1964 passed a law saying access must be equal,
if the restaurants and bus stations had continued to keep
separate bathrooms and separate water fountains, there would
have been a bloodbath in this country.
Same
thing with women's rights. Can you imagine passing Title IX
and seven years later a college says to you or to your
daughter, "Well, we have the football team for the boys, and
the basketball team for the boys and the baseball team for
the boys. We'll get around to giving the girls a swim team
sometime."
Women
would have gone crazy.
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It seems like the ADA works best
in employment cases.
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Employment?
Employment is a losing battle.
Let
me tell you an entity that has been cowardly and im-potent.
Under Section 503 of the Rehab Act, since 1973, every single
business that gets a contract with the federal government
was supposed to have an affirmative program for hiring
persons with disabilities. The U.S. Department of Labor has
never, ever, enforced that.
I'm
not talking quotas -- who cares quotas! Go and find out when
Boeing gets a federal contract for billions of dollars how
many people with disabilities have they hired, how many will
they hire, what are they doing. It's not quotas. They have
to have an affirmative plan and they have to implement
it.
If
you go in and Boeing has 60,000 employees and 20 are
disabled, that's not an affirmative plan. We're not
dickering over the numbers. We're saying that the Department
of Labor has not done its job.
The
federal government has totally abdicated responsibility for
the civil rights of people with disabilities. We see it with
the Department of Labor under Sect. 503, we see it with the
Department of Transportation in regulating Over-the-Road
buses, and with paratransit. The DOT does nothing to enforce
the ADA.
We
see it with HUD. Each recipient of HUD funds is supposed to
have 5% of its houses, the new dwellings, accessible for
people with disabilities. We know that doesn't happen. The
only agency with the money to go out and look at them and
make sure they do it is HUD. HUD doesn't do it in housing,
DOT doesn't do it in transportation, DOL doesn't do it in
employment.
When
historians look at the disability movement from 1973 to
2003, the most shocking thing will be how the federal
government totally abdicated its responsibility. Under Title
III, people weren't given any teeth to do it. Congress
passed the law. The federal agencies are supposed to be
enforcing it and they don't.
People
can bring a lawsuit. We have that pro se complaint,
so people can file their own lawsuit. That was done solely
because there are no lawyers who want to do these cases.
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But the ADA doesn't call for
equal access in all cases. It's program access,
right?
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That's
not what the ADA says. That's a misinterpretation. Let's
look at the law.
First,
when you use the word 'program' you're in Title II, which
applies to government. That term is not involved at all in
Title III.
Congress
wrote, 'Subject to the division of this Title, no qualified
individual with a disability shall, by reason of such
disability, be excluded from participation or be denied the
benefits of services, programs or activities of a public
entity, or be subject to discrimination by such an entity.'
DOJ, in its regulations under program accessibility, said
basically the same thing that Congress said.
In
1992, you were to look at a government program, service or
activity and then, when viewed in its entirety, determine
whether it was readily accessible to individuals with
disabilities. With any program back then, that concept
applies.
But
eventually the entire program is supposed to be accessible.
No one's ever defined 'eventually' except in the following
way: If new construction is done, they have to make the
entity accessible. If alterations are done, they have to
make the entity accessible.
Let
me put it in concrete terms: the lottery. Let's assume that
in 1990 there were 1000 lottery outlets in Pennsylvania.
When the regulations were promulgated, you had to look at
the lottery and say, when viewed in its entirety, is it
readily accessible? So you have to say, of that 1000, how
many were accessible, and where were they located. You'd
have to do a geographical distribution. Let's assume for the
moment that 333 were accessible and they were distributed
geographically equally, so people could agree that when
viewed in its entirety, the lottery was accessible.
Let's
assume that in 1993 there were another 100 lottery outlets,
so it's up to 1,100. Well, those new 100 all have to be
accessible. It's not a case of 'You would think.' They have
to be, because you are no longer looking at an existing
program; these are not existing outlets, these are new. The
1,000 on January 26, 1992, were existing. But the new ones
in 1993, they weren't existing in 1992.
The
government has to make sure that when they get new programs
on board, those programs are accessible. Not just when
they're newly constructed.
Very
few people understand Title II program access. If you did a
survey, most people would say that if the new 100 lottery
outlets in my example were all inaccessible, that would be
okay because the program may still be accessible when viewed
in its entirety.
Well,
if that's the case, then we're never going to get 100
percent accessibility. And Congress intended for us to get
to 100 percent accessibility.
Take
a homeless shelter that existed in 1992. How do they make
the shelter program accessible? One way may be to build a
ramp or a lift, another way may be to give vouchers to a
hotel. Let's assume they start a shelter in 1995. Well, they
just can't start an inaccessible shelter. That's a new
program, it was not an existing program in 1992. 'When
viewed in its entirety' is limited to existing programs as
of January 26, 1992.
Even
then, all services must be provided. That point is
incredibly widely misunderstood.
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You talk a lot about
segregation.
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The
Helen L. lawsuit was intended -- besides getting some
people out of nursing homes -- to get people to begin to
talk about segregation. Even though Congress talked about
segregation, it's rare to hear people with disabilities talk
about it.
People
who cannot get into that restaurant and eat with me, they're
discriminated against, as am I when I can't have lunch with
them. When people can't sit next to other people in the
movies, or they get put in the back row, that's
segregation.
People
with disabilities are still segregated, in nursing homes.
And I don't do much education law, but I am shocked that we
still have schools in this country segregating kids based on
disabilities.
People
have a right to be segregated if they choose. If people want
to go to a school where only deaf people are, or where
people only use ASL, they have that right. They cannot be
made to do that. Under Title II, the state cannot make them
do that. In Title III, it's the private business; the
restaurants and stores cannot make themselves
inaccessible.
It
has to be truly a choice. Sheltered workshops are a great
example. If you don't have supported employment, and job
coaches, then to say someone wants to choose sheltered
workshops -- if that's the only thing that exists, it's not
a choice.
Same
thing on nursing homes. There's so many people living in
nursing homes right now solely because there are no
accessible houses, no accessible services such as attendant
services. To say that people have chosen segregation -- they
may not have any choice. They want to live. They want to
just stay alive.
Say
you want to go to an art show with other people, who are
blind, and the museum says, 'Look, we would be glad to have
a special program oriented specifically towards blind
folks.' They can do that, but a blind person cannot be made
to only go to that. The blind person has a right to go to
any other show. And the museum must have reasonable
accommodation to that other show so there is equal
access.
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You say that assisted suicide is
against the Americans with Disabilities Act?
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Surveys
show it. When people with disabilities go to their doctors,
doctors cringe; they can't believe someone lives like
that.
People
with disabilities are not going to be given the same suicide
prevention interventions as non-disabled people. That's the
more critical point.
If
a 30-year-old non-disabled person goes to their doctor and
says, 'I just can't go on anymore. I've lost my loved one.
My life isn't worth anything. I want assistance in
committing suicide,' the doctor would do everything possible
to talk him out of it. There would be therapy, counseling,
medication. The unstated thing from the doctor's point of
view is that the AB's life is valuable.
If
a 30-year-old person with a disability comes in, says
exactly the same thing, doctors don't provide the same
suicide prevention. That's discrimination under the ADA
because it's based solely on disability.
If
physician-assisted suicide were permitted, the
discrimination against people with disabilities would be
much worse. Doctors are going to go, subtly or not so
subtly, out of their way to urge people with disabilities to
off themselves.
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Steve Gold has made statements on the Olmstead case which
are pertinent to the freedoms of all Americans with
disabilities. To
read them, click here.
To read excerpts from the amicus
brief Steve Gold wrote for ADAPT, NCIL and TASH in the
Olmstead case, click
here.
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