[Congressional Record Volume 140, Number 137 (Tuesday, September 27, 1994)]
[Senate]
[Page S]
From the Congressional Record Online through the Government Printing Office [www.gpo.gov]


[Congressional Record: September 27, 1994]
From the Congressional Record Online via GPO Access [wais.access.gpo.gov]

 
                         ADDITIONAL STATEMENTS

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                    NATIONAL HEAD INJURY FOUNDATION

 Mr. HARKIN. Mr. President, on June 24, 1994, my friend Tony 
Coelho, the Chair of the President's Committee on Employment of People 
With Disabilities, gave a powerful speech before the National Head 
Injury Foundation.
  With respect to health care reform, Tony stated that six simple words 
sum up what is needed to achieve real health care reform: ``no 
exceptions, no cancellations, and no conditions.'' I agree.
  I also agree with Tony's position about the implementation of the 
Americans With Disabilities Act: ``no excuses. Compliance is not 
optional. It is the law of the land and its observance is required.''
  I ask that Tony Coelho's speech be printed in the Record.
  The statement follows:

Speech of Tony Coelho, Chairman, President's Committee on Employment of 
                        People With Disabilities

       Thanks for your generous introduction.
       Like most speakers, I try before giving a talk to size up 
     the audience and target my remarks to its interests. But 
     sometimes it's hard to tell if you've succeeded.
       After addressing one group recently, for example, a woman 
     congratulated me by saying that my remarks were ``truly 
     superfluous.''
       She then urged me to have them published.
       ``Posthumously?'' I asked. ``The sooner the better!'' She 
     exclaimed with enthusiasm.
       While I am no longer a Member of Congress I have not lost 
     my enthusiasm for advocating on behalf of people with 
     disabilities, and I am proud to be here as the new chairman 
     of the President's Committee on Employment of People With 
     Disabilities.
       When the White House asked me how I could best serve the 
     President and the administration I didn't have to give it a 
     second thought.
       I immediately responded that it would be as chairman of the 
     President's committee--a position that would allow me to 
     continue to fight for independence and equality for people 
     with disabilities.
       As a person with epilepsy--the result of a head injury--I 
     have felt the sting of discrimination, I know what it is like 
     to be patronized and ostracized. I didn't like it when it 
     happened to me, and I don't want it to happen to anyone else, 
     not ever again!
       That's why this is more than just a job to me--it is the 
     continuation of a calling that has become my personal 
     ministry.
       I didn't take the job to be a figurehead. I mean to get 
     results and the President's committee offered the best 
     vehicle for achieving what I want to see happen.
       Thanks to Justin Dart, the committee has achieved a high 
     level of visibility and respectability in the disability 
     community. We are now ready to move to another level of 
     accomplishment.
       We are reviewing our programs, and reassessing our 
     activities to assure that we produce measurable results and 
     make real progress in halting discrimination against people 
     with disabilities wherever it occurs.
       In business we have a bottom line, and I intend as chairman 
     to make the President's committee more accountable and more 
     results oriented.
       My agenda as chairman is based on the priorities identified 
     by you and other disability leaders during ``Operation People 
     First''--the series of 60 statewide teleconferences conducted 
     by the President's committee last year.
       This dialog, as you know, resulted in a report to the 
     President and Congress calling for a comprehensive national 
     disability policy.
       The issues of primary importance noted in the report are: 
     Health care reform; ADA implementation; parity for mental 
     health; employment; and long term care.
       Before touching on some of these issues I want to say 
     something about the power of advocacy from the perspective of 
     someone who served 10 years in Congress and knows how the 
     system works.
       Advocacy is, above all, a personal matter, not something to 
     be left to surrogates.
       The most effective advocates are those who can ``walk the 
     walk and talk the talk.'' They have credibility and access 
     and get attention and empathy for their cause because they 
     tell it like it is. They've been there. They've lived it.
       Their cause is not an abstraction, it is a passion.
       Their personal experiences do more to help members 
     visualize the problem than a bushel of statistics.
       Not that statistics aren't needed to help size the scope of 
     the problem. But numbers alone never tell the real story. 
     National statistics are simply the accumulation of thousands 
     of personal stories.
       But people don't die and suffer by the thousands. They die 
     and suffer one by one.
       Personal anecdotes that touch the heart or prick the 
     conscience are the ones that get the most action.
       You can't buy the kind of commitment and dedication you get 
     free from advocates.
       Professional lobbyists can't provide it because they 
     haven't walked in your shoes.
       No lobbyist I've ever met--and I've known a few good ones--
     can make the case for insurance reform with the same dramatic 
     impact of a distraught mother whose child has been refused 
     coverage because the only treatment available is 
     ``experimental.''
       No lobbyist can express the rage and frustration of someone 
     who has recovered from months in a coma only to find he 
     cannot get the therapy he needs.
       That's why it's so important that advocacy efforts be 
     consumer driven and consumer directed, and that people with 
     disabilities learn to speak for themselves.
       There's an old Portuguese sailor's proverb that says: ``In 
     a storm, pray to God, but row to shore.''
       The message is clear: God helps those who help themselves. 
     We can't rely on others to row the boat for us.
       And we shouldn't ask others to represent us.
       For the same reason that blacks run organizations 
     representing African Americans and women run organizations 
     dealing with women's issues, people with disabilities should 
     run their own organizations.
       We don't have to look outside ourselves for the talent and 
     ability we need.
       Forgive me for belaboring the point, but I think it's an 
     important one and I feel the need to express it strong. The 
     focus of your conference is not surprisingly, the issue of 
     health care reform. I say not surprisingly because it clearly 
     ranks as the most important priority of the disability 
     community, and rightly so.

  In terms of quality we have the world's best health care system. In 
terms of access, it may be the world's worst for people with 
disabilities, especially for people with head injuries who are so often 
denied coverage for the medical care and treatment needed to restore 
their skills, maximize their strengths, and compensate for weaknesses.
  As you all know from news reports, President Clinton's health care 
reform plan is coming under heavy fire from special interests, and 
there is more and more talk in the air about ``compromise''. This is 
all the more reason to turn up our advocacy efforts another notch, to 
row as hard as we can, and, please, don't think you as an individual 
can't make a difference. You can!
  Members of Congress pay close attention to what their constituents 
have to say. It doesn't take 700 letters or even 70 to get your 
representative's attention. Just seven healthfelt, handwritten letters 
on a subject from the folks back home is enough to get a Member to 
assign someone on staff to look into it and give him a report.
  Health care reform is too complicated for me to deal with in much 
detail here, but what we want is not complicated at all. The message we 
need to deliver can be stated simply and directly without getting 
bogged down in details.
  Six simple words sum up what is needed to achieve real reform: No 
exceptions; no cancellations; no conditions.
  By definition, universal health care coverage must include everyone, 
and that includes parity for people with psychiatric problems. No 
legislation that leaves out 40 million Americans deserves to be called 
universal. We can't cut out nearly one sixth of the population and 
pretend to call it universal.
  We can't ignore these 40 million Americans and we won't abandon them. 
If we allow them to be forgotten in the fight for health reform, we 
will have bought benefits for ourselves at the price of our pride and 
the sacrifice of our principles. We can't do that and we won't.
  ADA implementation is our other top priority. Our position on this is 
even easier to summarize. It is: ``No excuses.'' Compliance is not 
optional. It is the law of the land and it's observance is required.
  I said ``required,'' not requested.'' We won't back down and we won't 
debate. We rejected excuses in other civil rights struggles and we 
reject them now. Civil rights are not negotiable.
  President Clinton is fully behind strict enforcement of ADA. He gave 
me his personal assurance of this when he asked me to chair the 
President's committee.
  His support counts for a great deal in our fight for equality because 
our struggle has moved from the legislative arena to a new 
battleground--one where we hold the moral high ground.
  Discrimination is an evil that has no place in America. It is morally 
unacceptable and personally reprehensible to most Americans. As 
chairman of the President's Committee on Employment of People with 
Disabilities, eliminating job discrimination is of special concern to 
me.
  Millions of Americans with disabilities don't have a job and dim 
prospects for gainful employment. Although we represent nearly 20 
percent of the population, we account for only 4.3 percent of the 
national workforce.
  The overall unemployment rate for people with disabilities is nearly 
24 percent, close to four times the national average. And it's worse, 
much worse, for people with severe disabilities. Nearly three-fourths 
are without jobs and unable to support themselves. We've got to fix 
that.
  I personally believe that we can look forward to a big improvement in 
employment figures if we capitalize on the technological revolution.
  I don't think we yet fully appreciate or understand the enormous 
influence the information superhighway will have on our everyday lives 
and what a great liberating factor it can be for all people with 
disabilities.
  If we are ready to take advantage of new technology and put it to 
work for us, it will open doors and avenues to progress never before 
dreamed of by people with disabilities. If we don't, we'll be stuck on 
the road to nowhere and will have missed one of the greatest 
opportunities ever for increased independence.
  One final thought I want to leave with you is this: Congress can pass 
laws till the cows come home, but what brings about real change is 
change in the mind and hearts of people. Legislation that captures the 
spirit of the times creates a tailwind that can bring about desired 
change faster than would otherwise be possible. It defines public 
policy, but it does not assure public acceptance.
  We now have the law on our side. But to gain full compliance with ADA 
we need to get the public on our side and build broad-based support for 
the underlying principles of ADA. Not just because the law says so, but 
because it is the right thing to do.
  Not just because you can be fined or sued for noncompliance, but 
because discrimination is not decent and it is un-American.
  In its largest sense, our fight against discrimination is a 
plebiscite about who we are and what kind of a country we want to be.
  It is more than a fight for the rights of people with disabilities. 
It is a struggle for the soul of America and the rights of all 
Americans. To energize America and remain true to our principles, we 
need to employ to the fullest the ability of all our citizens.
  Finding work for those who want it, and providing care for those who 
need it, is a large agenda. But like our forefathers, we have a 
profound responsibility to turn a vision of equality and independence 
into reality for present and future generations of people with 
disabilities--a responsibility to make good on the American claim of 
liberty and justice for all.

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