http://www.chicagotribune.com/news/nationworld/chi-0508100128aug10,1,2576537.story?page=3
TRIBUNE PROFILE: MARCA BRISTO
Champion
for rights of disabled
The president of a
treatment to an international level
By Crystal Yednak
Tribune staff
reporter
In her mind, Marca Bristo was fine. Her new life in a wheelchair
was just another test of her strong will, and she would learn to make do.
So she tried not to take it personally when waiters asked her dinner
companions, "What does she want to order?"
She tried not to be annoyed when she couldn't use
system because the buses had no hydraulic lifts, or when she couldn't go
to the store around the corner from her apartment because she couldn't
get her wheelchair over the 6-inch curb.
"I'm just going to persevere," she recalls thinking.
But when Bristo, a family-planning nurse working in a
women's
health-care center, lined up the medical charts of all
the disabled women
she had seen, she realized none of the women had been asked the normal
questions about their reproductive health that would be asked of any
other woman.
She saw that the frustrations she experienced were the problems of so
many others. They were ignored. Or they were treated like inanimate objects.
She took that personally.
That's not right.
Bristo uttered that phrase then, words that have
propelled her through a
career spent nudging, pushing, changing.
"You say, `Wait a minute. I'm still sexy. I still want to go to the
movies. I don't want to have to pick my restaurant according to whether I
can get in,'" said the
For more than 25 years, Bristo and Access Living, the
independent living that she heads, have helped craft local, national and
international reforms to protect the rights of people with disabilities.
On Tuesday, Access Living, considered a model around
the nation, broke
ground for its permanent headquarters, a $13 million building in the
"I see Access Living as kind of a thought leader within the
disability-rights field and Marca as an important
thought leader in the
disability-rights movement," said Andrew J. Imparato,
president of the
Washington, D.C.-based American Association of People with Disabilities.
Nudge to schools
As head of Chicago Public Schools in the late 1990s,
Paul Vallas was on
the receiving end of the push by Bristo and Access
Living to make schools
more accessible.
"She gave us the proverbial kick in the pants to really get our
compliance programs going," said Vallas,
referring to the Americans with
Disabilities Act.
Their meetings could have been marked by tension and confrontation, but
Vallas said Bristo came at
them with intelligence, passion and sincerity,
and they were loath to disappoint her.
"She didn't just push us to do the right thing; she helped guide us,"
he
said. "She really gave me an education as to what the responsibilities
were of a school district" to make buildings more accessible.
During a staff meeting, Bristo, 52, takes her place
at the head of a
long table at the group's current headquarters on
mood is light, but the agenda is heavy--lawsuits that could set
precedent, meetings with housing authorities, attempts to press society
to rethink the idea of placing people in institutions.
Bristo, with stylish glass frames and long dark hair,
mostly listens as
the staff details its work, interrupting to share her insight on the
broader issues. She is the president, chief executive officer and public
face of the organization, which now has more than 50 people on its staff.
Sometimes such work can be embarrassing to the people or institutions
they're trying to change, said Diane Coleman, executive director of a
center for independent living in
shied away from taking clear and strong stands on issues."
The disability rights movement has marked some victories of late, such
as the Chicago Transit Authority's buses recently becoming 100 percent
accessible, a milestone reached after years of litigation by disability
activists.
Excluding disabled people from riding the buses reinforced stereotypes
"about everything they think we can't do--you go to a job interview and
the person is thinking, `How is she going to get to work?' It's a little
thing, but big," Bristo said.
Costs of compliance
But she also sees a backlash occurring as officials
argue that it's too
expensive to comply with the Americans with Disabilities Act.
"I can look out and see we are beginning to make big changes in the
world around us," she said. "Still, we see resistance to our
work."
Last month, Bristo marked the 15th anniversary of the
helped draft--by taking part in a coalition suing the State of
Access Living, Equip for Equality and other advocacy agencies allege that
the state places people with developmental disabilities in institutions
rather than less-restrictive community settings.
Bristo was 23 when she broke her neck in 1977 diving
off a
the water. She was partially paralyzed, but has use of her arms.
She was treated at the Rehabilitation Institute of Chicago, which at the
time was trying to figure out how to keep the young people being treated
there from spending the rest of their lives in institutions.
Because Bristo had come to
they asked her to help. She said no.
But after she started working with patients at the women's health
center, she learned that disabled women weren't being treated the same as
other patients. In 1978, she agreed to attend a conference in
She said the trip transformed her.
There, the buses had lifts; the streets had curb cuts. She later learned
that a group of disabled activists there had begun to push for changes.
"These were not just my problems," Bristo
said.
She started working with the Rehabilitation Institute staff, who wanted
to start a transitional living center where disabled people would learn
the skills they needed to live at home.
"Learning how to mop the floor and make the bed wasn't my problem,"
she
said. "My problem was my house had seven stairs."
Then the institute staff considered the benefits of a center for
independent living, which would be a meeting place, a referral center,
but not a residential home.
Such centers, which are run and staffed predominantly by
people with
disabilities, help with issues like where to find personal assistants and
accessible apartments. The centers also are advocates for the disability
community.
In 1980, Bristo was appointed director of Access
Living, one of the
first 10 federally funded centers for independent living in the country.
"To have a good, organized front in
Mike Ervin, a longtime activist and founder of ADAPT, a grass-roots
disability rights organization in
Writing civil rights bill
In 1982, Access Living and other centers for
independent living formed
the National Council on Independent Living to organize centers nationwide.
While advocates were discussing how to press for national change, Bristo
attended the early meetings about whether to try to amend the Civil
Rights Act or write new legislation.
"What greater form of discrimination than not to be included in the
Civil Rights Act?" Bristo asked. "Even the
people writing the Civil
Rights Act discriminated against us."
But the National Council on Disability decided the group should write
its own bill, so Bristo and other activists took
their stories to
disabled relative. They wanted Congress to understand the issues on a
personal level. The Americans with Disabilities Act became law in 1990.
Longtime friend Sam Assefa, an architect, said he
went to Bristo to
learn more about
"I was impressed with how she gets across to people who haven't had
experience with disabilities what this means," he said.
In 1994, President Bill Clinton appointed Bristo the
first disabled
person to head the National Council on Disability.
"Beyond preaching to the choir, she's been able to bring the disability
rights message to a larger audience," said Karen Tamley,
who worked under
Bristo at Access Living, but was recently tapped to
head the Mayor's
Office for People with Disabilities.
Impacting the world
Married with two teenagers, Bristo
lives in
for her work. That's partly because the movement she has been such a key
player in now has a global impact.
A group from
about centers for independent living and disability rights. When Bristo
visited this year, she saw the group had started 10 organizations and had
put together a demonstration involving 800 disabled people.
Bristo also is working with international groups and
the United Nations
to create a convention on disability rights.
"We've moved out of our youth and into our adolescence," Bristo said as
she shares a list of the challenges that remain for the disability rights
movement. "What will we do when we leave our adolescence and move into
adulthood?"
--
cyednak@tribune.com