[Congressional Record Volume 165, Number 149 (Tuesday, September 17, 2019)]
[Senate]
[Pages S5501-S5502]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]



                        Remembering Marca Bristo

  Mr. DURBIN. Madam President, the disability rights movement is one of 
the great civil rights achievements of our time, and Chicago's Marca 
Bristo was that movement's Rosa Parks.
  Marca was a visionary and inspiring leader, who helped change Chicago 
and change the world when it came to the rights of the disabled, and 
she was my friend.
  Sadly, Marca died last week in her adopted hometown of Chicago at 66 
years of age.
  In typical Marca style, she worked right on up to the few days before 
her death, trying to bend the arc of history just a little more toward 
justice before she drew her last breath.
  I was happy to join my colleague Senator Tammy Duckworth this week in 
sponsoring a resolution honoring Marca's life and work.
  I would like to take a few moments on the floor today to remember 
this amazing woman.
  While most Americans have never heard of Marca Bristo, few lives went 
untouched by her lifelong quest on behalf of people with disabilities. 
She was a nationally and internationally acclaimed leader in the 
disability rights movement.
  She helped to write and to pass the Americans with Disabilities Act 
in 1990, which outlawed discrimination against the estimated one in 
four Americans with disabilities, and she spent the rest of her life 
making sure the ADA was faithfully implemented.
  Along with leaders like Justin Dart, Marca changed the way Americans 
thought about disabilities. She persuaded us to view the disability 
experience as a civil rights issue, not just a medical issue.
  To Marca's mind, what kept many people with disabilities from leading 
full lives was not their disability but the barriers they faced. What 
needed to change, she said, was not the person with disabilities but 
those obstacles that blocked their path. The problem was not that her 
wheelchair was too wide for certain doors; the problem was the doors 
were too narrow for her wheelchair. Remove the barriers, and people 
with disabilities can lead rich and full lives and make enormous 
contributions. That is part of what Marca taught me.
  She was tough, smart, funny, determined, and fearless. She knew how 
to motivate others and how to build coalitions.

[[Page S5502]]

  Her parents actually named her Marcia, but during her freshman year 
in college, a classmate called her Marca. She liked it, and it stuck.
  She moved to Chicago and earned a nursing degree from Rush University 
College of Nursing in 1976.
  In 1977, when Marca was 23 years old, working as a labor-delivery 
nurse at a Chicago hospital, she and her friend were sitting on the 
shore of Lake Michigan, when a dog grabbed her favorite pair of sandals 
and ran into the water with them. Marca dove in to retrieve her shoes, 
not realizing the water was shallow. She broke her neck and was 
paralyzed from the waist down for the rest of her life.
  Because of her paralysis, she lost her job, her health insurance, her 
home, her car, and the ability to navigate the city she loved. She 
thought she would never work again, but luckily the director of 
Northwestern University's Prentice Women's Hospital thought otherwise 
and convinced her to return to nursing.
  At one point, she attended a work conference in San Francisco and saw 
for the first time an abundance of curb cuts--curb cuts that enabled 
people with disabilities to cross the street. It was an eye-opener for 
Marca.
  As she later wrote:

       No longer did I see curbs or stairs or inaccessible buses 
     and bathrooms as a problem around which I needed to navigate. 
     Rather, I saw them as examples of societal discrimination--
     and felt a responsibility to get involved to help people with 
     disabilities, in Illinois and beyond.

  In 1980, Marca founded Access Living in Chicago, a nonprofit 
dedicated to helping people with disabilities live as independently as 
possible rather than warehoused in institutions.
  Access Living led the fight to make public transportation in Chicago 
more accessible. Marca was not a shrinking violet. In 1984, she joined 
others, chaining themselves to Chicago Transit Authority buses. She 
ended up getting arrested, and they ended up filing a lawsuit in reply 
against the transit agency.
  Her determination led to the installation of wheelchair lifts and 
critical changes to CTA buses and rail stations. Access Living became a 
disability leadership model for other cities around the country and 
around the world.
  In 1992, Marca cofounded the National Council on Independent Living, 
which she led for many years.
  In 1993, President Clinton named her to head the National Council on 
Disability. She was the first person with a disability ever to hold 
that post, and she held it until 2002.
  She was elected president of the U.S. International Council on 
Disabilities and traveled around the world advocating for people with 
disabilities and their families.
  She participated in the negotiation for the U.N. Convention on the 
Rights of Persons with Disabilities, a global accord based on the 
Americans with Disabilities Act. More than 160 nations have signed that 
treaty, including the United States. Sadly, this Senate has failed to 
ratify that treaty. I worked hours and hours with Marca to try to win 
the votes in the Senate for this bipartisan measure to help people with 
disabilities. We even brought former U.S. Senator Bob Dole, a World War 
II hero and a father of the ADA, to sit on the floor of the Senate when 
we cast the votes on this treaty. Unfortunately, it did not pass.
  Marca called July 26, 1990, the day President George H.W. Bush signed 
the Americans with Disabilities Act, ``Our Independence Day.''
  On that day, she said:

       This ragtag army of people who couldn't see, hear, walk and 
     talk did what everyone said couldn't be done. We passed the 
     most comprehensive civil rights law since the passage of the 
     1964 Civil Rights Act.

  In a 2015 video interview for Rush University Medical Center, 
celebrating the 25th anniversary of the Americans with Disabilities 
Act, Marca said: ``The law for the first time enshrined in federal law 
that disability is a normal part of the human condition, and the world 
needed to change.''
  In July 2017, days before another ADA anniversary, Marca was again 
fighting for justice. She was 1 of more than 60 who were arrested for 
protesting against the proposed deep cuts in the Medicaid Program that 
had been included in a Republican effort to repeal the Affordable Care 
Act.
  As the Capitol Police wheeled her away, Marca raised a clenched fist 
and smiled. That is how I am going to remember her: optimistic, 
determined, even against long odds.
  Days after her arrest, another American hero with a disability, John 
McCain, came to this floor and in the well of this Senate, shocked his 
party and the Nation by becoming the deciding vote against the repeal 
of the Affordable Care Act. I like to think my colleague from Arizona, 
John McCain, saw in Marca Bristo and her determined friends the same 
courage he had witnessed so often in our military.
  My wife Loretta and I extend our condolences to Marca's husband of 32 
years, Bob Kettlewell; their two children, Samuel and Madeline; her 
granddaughter, who was born in June; to Marca's sister Gail; and to her 
countless friends and colleagues.
  Marca made the lives of hundreds of millions of people better. I am 
going to miss her warm smile, her wise advice, her vision, and her 
courage.