| In 1984, the National Council
on Disability hired Lex Frieden and charged him with preparing
a report on the public
policy needs of people with disabilities. Eighteen months later,
Toward Independence was completed, and from its primary recommendation – for
legislation protecting the civil rights of people with disabilities – came
the Americans with Disabilities Act.
In a recent interview1 conducted by Rachel Kosoy of ILRU's Disability
Law Resource Project, Frieden provides a glimpse into the politics
and personalities of
that time, and we are given insight into an historic moment when
the Council's recommendation
for civil rights legislation was imperiled.
Rachel: You
were appointed to the National Council on Disability by then-President
Ronald Reagan where you were involved in the creation of the
ADA.
Lex: At
that time, it was the National Council on the Handicapped, and
I was its first executive director. The Council had undergone
a couple
of changes in name and identity since it had been started in 1978
as an advisory body for the Department of Education. In 1984, Congress
made it an independent federal agency, and I was hired to put the
agency together as executive director. That was a great experience,
and a wonderful time for me and my family to be in Washington,
D.C. Setting up the Council was a challenge, but as you might
imagine,
the work leading to the ADA was the most interesting aspect of
our time there.
Rachel: Can
you describe the time leading up to the ADA?
Lex: People
with disabilities have always been in our society. Unfortunately,
in this country, we have a culture of singling out some groups
simply based on characteristics over which they don't have any
control – particularly
gender, race, and disability. Human nature seems to make us classify "other
people" into categories and to treat them differently as a
result of that
classification.
In our country, with The Civil Rights Act of 1964, we took action
at the highest level to acknowledge that while discrimination may
happen, it shouldn't. In
fact, since the Civil Rights Act, we regard discrimination on the basis of
race, including differential treatment, as a legal offense.
Since that time, I think that people with disabilities have asked the question:
Why not us? They didn't ask this believing that there is some great benefit
to being covered by anti-discrimination law, but out of awareness that the
general public, business owners, employers, schools, and others sometimes
made decisions based on the existence of a disability rather than what the
person
who had a disability was trying to do.
Rachel: At
the time you were involved in creating and drafting the original
ADA, these were revolutionary ideas.
Lex: Not
in that sense of the word. People with disabilities and others
knew that discrimination existed. I think what was revolutionary
was the
sense that we could create a law that would clearly define discrimination
on the basis of disability and provide some measure of protection
for people with disabilities.
Several years before we worked on the ADA, some members of Congress
introduced legislation that would simply add disability to the
existing Civil Rights Act
of 1964 as a covered entity. What they didn't understand was that dealing
with avoiding discrimination is one thing and actually making
the necessary repairs
and accommodations that are necessary to ensure that a person with a disability
has equal opportunity is another.
The difference, I think, between this law and other civil rights legislation
is in terms of reasonable accommodation. That was the real breakthrough
that we accomplished at the Council. We engineered and developed the
original
recommendation for ADA and incorporated the concept of reasonable accommodation.
Rachel: Would you expand upon how this
law is different from other civil rights legislation?
Lex: If someone of color is discriminated
against, that discrimination is clearly based on a physical characteristic,
color. There is no other obvious reason for it. The kinds of remedies
one would make for such discrimination are simply to ensure that individuals
have opportunities to demonstrate their skills and capabilities.
It is a little more difficult to demonstrate that a person with a disability
can do a job if he or she needs an accommodation. For example, if a person
in a wheelchair can't get into a workspace, his or her ability cannot be
demonstrated. Therefore, you have to make an accommodation, and after
that, the person has
the opportunity to demonstrate his or her ability to work, and in most
cases, becomes a good employee. So that's the principal difference.
The Council worked very hard and consulted with many business leaders,
economists, and others to ensure that the reasonable accommodation provision
was not an
undue burden on the part of employers. In fact, we used the term “undue
burden” in our proposal, and it exists in the law today. It's intended
to protect the employers and others who are obliged to meet the requirements
of the law. The last thing we wanted to do was to make the economy turn
upside down because it cost too much for some people to make accommodations.
So, there
is a range of requirements determined by the size of the business and the
resources they have available to them.
Rachel: Would you say that selling the
concepts of reasonable accommodation for persons with disabilities and
undue burden for the businesses was one of the chief challenges in passing
the
ADA?
Lex: Clearly, helping people understand
those concepts was key. Helping them understand in terms to which they
could relate became a real challenge. I remember one member of Congress
from Texas
who said that his brother owned a hardware store in a rural community
in Texas which was built about 100 years ago. It had steps on it in order
to avoid the frequent flooding that occurred in the community. He didn't
get
a lot of business. It was basically a service to the community to have
the hardware store there. It wasn't earning a lot of money so; therefore,
there
wasn't a lot of money to build a fancy ramp in front.
So I said to him, your brother sounds like a really great guy, and he
said, yes, he is. So I said, if a person who needed a faucet came to
the hardware
store and couldn't get up the steps, wouldn’t your brother naturally
ask what he could do to help the person? The congressman said, yes, he
would. I said, well, wouldn't your brother naturally go back into the store
and bring
back a couple of samples of what was on the shelf so maybe he could sell
one of those things? The congressman said, sure, he would. So, I said,
Well that's
exactly what a reasonable accommodation is.
Rachel: One of the most commonly used phrases
related to the ADA is reasonable accommodation. What is its origin?
Lex: In the early 1970s, I was invited
to go to Washington, D.C., to help work on the regulations to implement
the 1973 Rehabilitation Act's new Title V. Its sections 503 and 504 required
nondiscrimination in publicly funded activities and facilities. Title
V was
really the basis of civil rights for people with disabilities.
During one of the work sessions, the question came up: When people make
these changes, adaptations, what are we going to call that? I said, Well,
wouldn't
that be a reasonable accommodation? The terms kind of stuck.
Rachel: That's where it came from?
Lex: Well, that's the first time I recall
hearing it.
Keep in mind that ADA was not only meant to protect people in places
of employment, but also to provide access to public goods and services.
It
may be hard for
people who have impairments or disabilities to get someplace, see something,
hear something, or otherwise manage. The ADA serves as a statement that
we believe that our society should do whatever is necessary and within
reason
to ensure that people, regardless of their characteristics, have opportunities
to take full benefit of our great society.
Rachel: How did it happen that while you
were its director, the Council developed what was, in effect, the basis
of the ADA?
Lex: When I interviewed for the job as
director of the Council, the people who interviewed me said, what do
you imagine doing in this job? I said, Well, I imagine getting something
done.
I've watched Washington too long to not be concerned about agencies and
people who work here, those that simply go round and round. I'm a faculty
member
of a great university [Baylor College of Medicine] and I'm accustomed
to writing reports and doing studies and that's something that I would
be
capable of doing for the Council, if given the opportunity.
The people in the interview said, well, as matter of fact, in the new
law establishing this agency, Congress prescribed a fundamental report
be prepared
within 18
months that summarizes the public policy needs of people with disabilities
in this country. Would that interest you? I said, Well I've had a lot of
practice writing reports, and this one sounds like it would be a lot
of fun to work
on. So, they hired me, and we worked on that report.
We had hearings in many different parts of the country. We sought public
input in many different ways. We came to the conclusion after 18 months
of study
that the principal need of people with disabilities in the United States
at the time was protection against discrimination. We heard it over and
over again
from family members, people with disabilities themselves, advocates, and
others. We were investing billions of dollars in rehabilitation and medical
care and
education for people with disabilities, and then turning around and telling
them that because they were disabled, they weren't able to do anything.
That didn't make much sense, and, certainly people knew that and understood
it.
So, when we put it all together, that was the chief recommendation that
we wanted to convey in this report.
Rachel: During the hearings, you heard
people with disabilities request protection from discrimination in various
areas of life.
Lex: Absolutely, in every aspect of society – housing,
transportation, education, employment, and on and on and on.
Congress held one hearing in Boston, and some of our colleagues brought
four wheelbarrows full of letters with these stories of discrimination
and difficulties
living with disabilities in this country. Those who brought in these letters
suggested to the members of the panel that they didn't need to come and
listen to hours of testimony – they just had to read the letters.
Rachel: So, there were that many stories?
Lex: Rachel, there were hundreds and hundreds
of stories offered.
We finished this report. It was called Toward Independence. The report's
main recommendation was that there be a law protecting people with disabilities
from discrimination in all these areas. By statute, the report was supposed
to be done by January 26, 1986, and I was bound and determined that our
little agency would finish the report and have it turned in by the time
it was due.
We worked very hard to see that the report was done on time, and a few
weeks before the report was due, a member of the President's staff said
to me in
a meeting, By the way do you realize that you have a report that has to
be finished by January 26? Shouldn't you ask for an extension? I kind of
chuckled
and said, we don't need an extension; we’re going to have the report
ready by that time.
He said to me, well, we haven’t reviewed the report yet. I was sort of
startled, I said, Well, I didn't know you had to review the report. The law
says the Council produces and submits the report. He said, well, you are a
Presidential appointee, there is a process for that, and you cannot issue a
report unless it’s reviewed first by us.
Well, I was stunned, so I said, what do I need to do? He said, you need
to take a draft to the disability liaison in the Domestic Policy Council
in the
White House. So that afternoon, I phoned this disability liaison and scheduled
an appointment. In doing so, the liaison said, Will you please send a draft
today? We'll take a look at it, and next week we'll meet. I said, Fine,
and took the fancy finished cover off the report, wrote draft on it,
and sent
it over.
The next morning, about 6:00 a.m., the phone rang and my wife, Joyce,
answered it, and she woke me up and said, Lex, the White House is on
the line. I said,
Give me a break, are you kidding me? I took the phone and it was the liaison
with whom I was supposed to clear the report.
He said, do you realize what you've done? Why this report is so radical,
not even Ted Kennedy would think of offering recommendations like this!
I said,
Excuse me? He said, you expect the United States government to pass a law
protecting people with disabilities against discrimination?
I said, Well, yes – it seemed reasonable to us. The law required
us to make a report with recommendations about the public policy needs
of people
with disabilities. And, protection from discrimination is number one.
He said, well, making the observation that it is an issue of concern
is one thing, but making the recommendation that there be a law goes
well
beyond that.
I said, Well, I'm sorry, but we are doing what we were told by the Congress
when they made our authorizing statute. He said, be in my office this morning
at 10:00 a.m., and I will have the head of the Domestic Policy Council,
my boss, at this meeting.
Well, during the time that I was dressing and trying to remember the
subway stop nearest the White House, I made some calls to see who this
boss was.
Turns out he was Bill Roper, a medical doctor who had worked in a rehab
center in
Alabama at one point in his career. Knowing that, I went to the meeting
fairly confident. The first guy, the liaison, went into Dr. Roper's office
and laid
our report on the coffee table.
He said, this is going to have to be rewritten. I'll rewrite it. You'll
rewrite it. I don't know what's going to happen, but it will not be issued
in this
form. We'll get an extension today, and you'll go back to the drawing board.
He said all that before he introduced me to Dr. Roper, who was sitting
on the couch, but I just wasn't fazed by his reaction. Dr. Roper introduced
himself
and said, you’ve invested a lot of effort in this report. I said,
yes, we worked 18 months collecting information from people with disabilities
and
family members, and public officials. We have invested a lot of time in
this. He said, I assume that your conclusion is that discrimination is
the principal
policy issue. I said, the data we have indicates that is true, and we can
only report what we've learned.
He said, there seems to be some concern here about how you presented
this data, in particular this recommendation. I said, yes sir, it's obvious
there is some
concern. I hope we haven't provoked anybody. But the law does say, as I'm
sure you're aware, that we're supposed to make this report with recommendations
about what to do with the issues we discover.
He acknowledged that and said, Well, I haven't had the opportunity to
read this report, but I have read the recommendation. What is your intent
with
this? I said, My intent is to stop wasting the billions of dollars we
spend on medical
rehab, vocational rehab, special education, and other kinds of accommodation
to ensure that people with disabilities have opportunities and then turn
around and allow discrimination to go on that prevents us, as a society,
from benefiting
from the great skills these people have.
He said, this administration supports that fully. This administration
supports the report you are going to offer, and if you'd like, I'll schedule
an appointment
with the President so you can give the report to him in person on the day
the law calls for it to be delivered.
Well, I nearly fell out of my wheelchair, and I'm sure that guy who called
me to the meeting that morning was more than a little embarrassed. He was
clearly changing colors. The lesson for me, Rachel, is how people see
things. The first
guy saw a threat; the second guy saw an opportunity.
This story has more turns to it – set backs which became opportunities.
For instance, we were so pleased that we were going to have an opportunity
to present the report to the President of the United States. But two days
before we were to present the report, the Challenger space shuttle exploded,
and because
of that terrible episode, all of the President's schedule was cancelled
for the next week. Like all Americans, we were appalled at the accident.
On a much
more personal level, we were sorry for the lost opportunity to get some
coverage for this issue which is so important to the lives of people
with disabilities.
And, most importantly, we were sorry to have missed the opportunity to
sensitize President Reagan to the issues and to try to get his leadership
to deal with
the solution.
We were told by the President's scheduler when she cancelled our meeting
that the Vice President was available to meet with us at that time. So,
we took
our report to meet with Vice President George Bush.
A few days before our meeting there was a lead article in the Washington
Post asking, "Where's George?" The article was talking about
how President Reagan was always the front person for the administration,
and
how Vice President
Bush was delegated to other duties and really didn't have an opportunity
to speak much to the public and so-forth. Of course, we were not as excited
to
meet the Vice President, but we were eager to show someone in the White
House our report.
That morning while waiting to see the Vice President, I saw James Brady,
the press secretary who had been injured in the assassination attempt
on President
Reagan. Mr. Brady, who was obviously disabled, and his attendant, were
en route to his office. He greeted us and talked about the weather. He
went
on to work,
but that gave me a warm feeling to know that there was something in this
Administration and something in these halls that makes you believe they
understand disability
and peoples' ability to work despite their impairments.
We went in and handed Mr. Bush the report, and he said, Thank you for
this copy, I'd like to have my picture taken with you. We all thought
that was
all there was to it. It soon became apparent, however, that he had actually
read
the report and that he was particularly interested in the part on nondiscrimination.
It was such a wonderful meeting. We spent about 45 minutes with the Vice
President. It felt so great that someone in a leadership position like
his, the Vice President
of the United States, actually understood what it was we were trying to
do.
Rachel: I believe he actually had some
personal experience with disabilities in his family.
Lex: He did, of course, as most families
do. He said as we were leaving, you know this is a wonderful report;
I'll share it with the President. He said, apologetically, I'm sorry
I can’t
do more but you've probably read the newspapers, and as you know, I'm
just George.
It was almost prophetic, because as we were leaving, he said, if I have
an opportunity to help you with this in the future, I'll do it. Two years
later
in his first address to the country, he said, one of the things I want
to do is to make sure there is a law in this country that protects people
with disabilities
from discrimination. And two years later, he signed the ADA.
Rachel: It's really an incredible story,
and I know there are wonderful stories about all of the negotiations
involved in getting the ADA legislation through Congress.
Lex: Oh, great stories Rachel. People might
be surprised to learn that there are so many little stories that don’t
make the headlines. I recall Congressman Stenny Hoyer literally crawling
around on hands and knees behind other members of Congress in a committee
mark-up session, lobbying to get the committee to vote to approve the ADA
before its passage. So many little things that lead up to something big – passage
of the Americans with Disabilities Act. In the end, it was passed by
an overwhelming majority. Only two members of the Senate failed to vote
for it, and in the
House, it was passed by one of the largest majorities ever recorded.
It is landmark legislation, and I think that it has demonstrated through
the years
its ability to meet many of its objectives. It's not perfect. No law
is, I suppose, and it will probably need to be refined in the future.
However,
the concept is enduring.
I think that as a result of the ADA, people with disabilities who have
had experiences, as you and I have, can go forward with their lives,
believing that there is formal acknowledgment that we should have the
opportunity to
benefit, just like everybody else, from our work and from our good fortune
to live in this great country.
ABOUT THE AUTHORS
An accomplished trainer and interviewer, Rachel Kosoy joined
ILRU's Disability Law Resource Project in 1999 and currently
serves as
its deputy director.
Mark Richards joined ILRU in 2002 as a program associate specializing
in research information dissemination and utilization after retiring
as a senior
chief
petty officer from the U.S. Navy.
Lex Frieden is director of ILRU, senior vice president of TIRR, and professor
in the departments of physical medicine and community medicine of Baylor
College of Medicine. He founded ILRU in 1977.
REFERENCES
1 Note: this was adapted from an April 2002 edition
of the television program, Focus on Ability, broadcast on Houston's Municipal
Channel Cable Network and was sponsored by the Disability Law Resource
Project with funding from the National Institute for Disability
and Rehabilitation
Research, U.S. Department of Education. The opinions stated in this article
and on the television program are the opinions of the author, and endorsement
by NIDRR or the U.S. Department of Education should not be inferred.
|
SCI
Life
