I admire and treasure my relationship with Marca Bristo. She is a visionary who has worked
so hard over the years advocating for the rights of people with disabilities.
Read Marca’s Perspective in today’s Chicago Tribune. Marca’s leadership was initial in the
passage of the American’s with Disability Act and continues to be a very effective activist in
Illinois and the nation.
Well done Marca.
I am honored to call you my friend.
25 years later: ADA opened a new worldAmerica changed for the better, but more progress is needed
By Marca Bristo
One day when I was 23 years old, back in 1977, I was hanging out at Lake Michigan
when my friend’s dog knocked my shoes in the lake. I dove in to retrieve them and broke
my neck, leaving me paralyzed from the chest down.
It didn’t take long to realize my world had changed. People immediately treated me
differently because of my wheelchair — I lost my job as a nurse, I lost my home, I lost my
health insurance. I couldn’t use public transit, and I couldn’t get into many public places
without entering through the service entrance — that happened more times than I care to
America in 1977 was a completely different country for those with disabilities.
The prevailing message I kept hearing was that I needed to “adjust to my disability.” It
never occurred to me that society had it wrong. In spite of my activist spirit and the
historical civil rights context in which I was raised, I was on my own to “cope” with this new
Then a life-altering thing happened — I went to Berkeley, Calif., to attend a conference on
disability. The world was different there. People with disabilities were visible everywhere;
curb cuts, accessible buildings and accessible bathrooms were the norm. Even the bus
had a wheelchair lift. Activists made those changes happen.
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.
My story is not unique. People with all different disabilities were connecting and creating
the movement that would change the world as we knew it. Hundreds of people with
disabilities were organizing, claiming our disabilities and speaking out against
discrimination we faced in everyday life. Having shed the stigma which trapped us, we
set about to correct that.
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. Signed into law on July 26, 1990, by President George H.W.
Bush, the Americans with Disabilities Act ushered in a new paradigm of disability policy
— inclusion, not exclusion; independence, not dependence; and empowerment, not
This law called for lifts on buses; accessible facilities, streets and public services;
accessible ATMs; access to telecommunications and the workplace and so much more.
The ADA gave us the legal tools we needed to fight discrimination, but it also
represented a symbolic victory. We had a new national policy on disability that
recognized — in law for the first time — that disability is a natural part of the human
condition, and the world had to change to let us in.
Today, 25 years after that day, America has changed so much that we almost take
some of the changes for granted. The lives of people with all types of disabilities —
physical, developmental, psychosocial — have significantly changed for the better. I
can already see perceptional transformation in my children and their friends — who
don’t think twice about my disability — which gives me great hope in this next
But there is still much room for progress before the true promise of the ADA is fulfilled.
Too many people remain shuttered away in institutions despite the right to live in the
most integrated settings. A large gap in education and degree attainment persists
between students with and without disabilities.
People with disabilities by and large remain the most unemployed and underemployed
constituency within the country. In addition to the education systems that fail to prepare
us to transition out of school, we confront a stigma that equates disability with an inability
to work. Despite that stigma, the majority of people with disabilities want to work. And
when hired, their supervisors rank them as among their highest contributing and most
Similar challenges exist within community living and technology — and those doors
must not remain closed to people with disabilities.
Though we have accomplished so much in the past 25 years, we have an enormous
responsibility to preserve what we have gained, particularly in light of recent proposed
budget cuts that would devastate special education services and community-based
services. It’s vital that the next 25 years bring full inclusiveness and equality of opportunity
for all. When we do that, we will break down barriers and create a community envisioned
by the original champions of the Americans with Disabilities Act.
Marca Bristo is the CEO of Access Living, a disability services and advocacy organization,
and a co-chair of ADA25 Chicago, a regional partnership initiative leveraging the 25th
anniversary of the ADA to improve access, inclusion and equality of opportunities for
people with disabilities.
Tony Paulauski Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423