Remembering Marca Bristo (1953-2019)

The National Organization on Disability joins the disability community in mourning the loss of Marca Bristo, a pioneer and passionate advocate for disability rights, who passed away last week after a battle with cancer. She was 66. Ms. Bristo is survived by her husband, Robert Kettlewell, their two children, and a grandchild.

Marca Bristo speaking at a White House event in 2010 marking the 20th anniversary of the Americans with Disabilities Act
Marca Bristo speaking at a White House event in 2010 | Charles Dharapak/Associated Press

Few individuals leave behind marks so indelible. From helping to craft and pass the Americans with Disabilities Act, to reshaping the city of Chicago’s disability policies and serving as an advisor to President Obama’s Administration, Ms. Bristo was truly a force for positive change. She traveled the world many times over in her motorized wheelchair promoting the independent living movement, which she helped found, advancing the rights and well-being of people with disabilities everywhere.

To a most ardent champion for persons with disabilities, the National Organization on Disability says, simply, thank you for your service—your legacy lives on. (June 23, 1953 – September 8, 2019)

 

Full Obituary via the New York Times

by Glenn Rifkin (photo courtesy of Charles Dharapak/Associated Press)

Marca Bristo, Influential Advocate for the Disabled, Dies at 66

Paralyzed in an accident at 23, she devoted her life to changing perceptions of the disabled and was a key player in passing the Americans With Disabilities Act.

When she was 23, Marca Bristo, a nurse in Chicago, was sitting with a friend on the shore of Lake Michigan. Her friend’s dog accidentally knocked a prized pair of Ms. Bristo’s shoes into the water and, without a second thought, she dived in to retrieve them.

Striking her head, she broke her neck and was paralyzed from the chest down. In that instant, Ms. Bristo’s life changed forever in ways she could never have anticipated. She lost her job, her health insurance, could no longer use public transportation and had no access to many public places.

But rather than dwell on her misfortune, she became a powerful advocate for people with disabilities, spending her life working to change perceptions and the rules in a world that had traditionally ignored the needs of the disabled. She was a key player in the passage of the Americans With Disabilities Act of 1990, which outlawed discrimination against the nearly 50 million Americans with disabilities.

After a long battle with cancer, Ms. Bristo died on Sunday at 66 in her home in Chicago. Her death was confirmed by her husband, J. Robert Kettlewell.

Her passion reflected her own life philosophy; she refused to allow her disability to constrain her. She was married for 32 years to Mr. Kettlewell and they had two children. She recently became a grandmother.

“She focused on her ability, not on her disability,” said Valerie Jarrett, a senior adviser to President Barack Obama, who met Ms. Bristo in Chicago in the mid-1990s and later made her an adviser to the Obama administration. “There wasn’t a policy decision we made over those eight years that would affect the lives of people with disabilities, without consulting Marca,” Ms. Jarrett said in an interview for this obituary on Saturday.

In 1980, Ms. Bristo founded Access Living in Chicago, a nonprofit that promoted independent living for the disabled.

Access Living reshaped Chicago’s landscape for the disabled and became a model for cities across the country, and from that, Ms. Bristo founded the National Council on Independent Living, which she led for many years.

“Marca Bristo’s trailblazing leadership and bold strategic vision secured historic progress for every American with a disability and their families,” House Speaker Nancy Pelosi said in a statement. “With Marca’s passing, our nation has lost an extraordinary champion for the rights of people with disabilities.”

Her signature achievement was helping to pass the A.D.A. She was a protégée of Justin Dart Jr., vice chair of the National Council on Disability, and someone Ms. Bristo referred to as the “Martin Luther King of the disability rights movement” in a 2015 blog celebrating the 25th anniversary of the A.D.A.’s passage. They worked closely and she made pointed suggestions for ways to improve the legislation.

“My husband spotted her to be a future leader,” Yoshiko Dart said of Mr. Dart, who died in 2002. “She had principle and passion and wasn’t afraid of saying things to people. She insisted on justice for all types of people.”

In the 1980s, as a member of United States Task Force on the Rights and Empowerment of Americans With Disabilities, she connected with then-Congressman Tony Coelho of California, who, along with Senator Lowell Weicker of Connecticut, introduced the original A.D.A. bill to the 100th Congress in 1988. In her role, Ms. Bristo helped draft and amend the bill that eventually made its way to the president’s desk two years later.

“She was one of the strongest advocates, from the grass-roots side,” Mr. Coelho said in an interview on Saturday. “To a great extent, without the grass-roots effort, we wouldn’t have gotten the A.D.A.” Not content with the passage of the bill, Ms. Bristo spent the rest of her life making sure it was consistently implemented.

Marcia Lynn Bristo was born on June 23, 1953, in Albany, N.Y., to Earl Clayton Bristo and Dorothy Madeline Bristo. She spent her childhood on a family farm, along with her older brother, Paul, and sister, Gail, in Castleton, N.Y. before the family moved to West Winfield, N.Y.

 

She spent her senior year of high school in the Philippines and went to Beloit College in Wisconsin in 1971. At freshman orientation, an upperclassman nicknamed her Marca and the name stuck. She got her nursing degree from the Rush University College of Nursing in Chicago in 1976, intending to be a midwife, and worked at Northwestern Medicine Prentice Women’s Hospital in the labor and delivery unit.

She met Mr. Kettlewell in 1986 when he was chief of staff for the Illinois congresswoman Cardiss Collins, and the couple married in 1988. She gave birth to a son, Samuel, and a daughter, Madeline. Her granddaughter was born in July. They, and her sister, Gail Bristo Smith, survive her.

After her accident, Ms. Bristo became acutely aware of the impediments she would face. “People immediately treated me differently because of my wheelchair,” she wrote in a 2015 Chicago Tribune column. “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 reality.”

When she later attended a conference on disability in Berkeley, Calif., she got a glimpse of an environment with a completely different attitude toward people with disabilities. The city, with a history of activism, had curb cuts, accessible buildings and bathrooms, and the buses had wheelchair lifts.

“No longer did I see curbs or stairs or inaccessible buses and bathrooms as a problem around which I needed to navigate,” she wrote. “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.”

She became part of a growing movement. “This ragtag army of people who couldn’t see, hear, walk and talk did what everyone said couldn’t be done,” she said. “We passed the most comprehensive civil rights law since the passage of the 1964 Civil Rights Act.”

Edward M. Kennedy Jr., son of the late Massachusetts senator and currently the chairman of the American Association of People With Disabilities, met Ms. Bristo in the mid-1980s and said “she had an immediate impact on me.”

 

Mr. Kennedy, a former state senator in Connecticut, lost a leg to cancer in 1973, when he was 12. “She reframed the disability experience as a civil rights issue, as opposed to a medical issue,” Mr. Kennedy said on Saturday. “She was one of the pioneers trying to change the way people with disabilities thought about our circumstances. She used to talk about what she called ‘the internalization of oppression’ that existed in other civil rights struggles.”

“She was a force of nature,” Mr. Kennedy added. “In both her personal life and political life, she was a role model for millions of people with disabilities in our country.”

Ever the advocate, in the days before her death, Ms. Bristo received a phone call from Ms. Pelosi. According to her husband, the Speaker wished her well and said “I wish there was something I could do,” to which Ms. Bristo quickly replied: “You can. Move the Disability Integration Act to committee and to a floor vote.”

Texas A&M Launches State’s First Inclusive 4-Year College Program for Students with Disabilities

by Char Adams (via People Magazine)

Texas A&M University is opening the door to higher education for students with intellectual and developmental disabilities — making history as the first program of its kind in the state.

The school has vowed to help students with disabilities realize their dreams of becoming Aggies with a four-year post-secondary education program specifically designed to support them, the public university announced in a statement. The Aggie ACHIEVE program will begin this fall, with four students taking courses focused on independent living, career development and field specialization.

“This is not meant to be a place to come get the college experience and then go back to what you were doing before,” said Dr. Carly Gilson, assistant professor of special education in Texas A&M’s College of Education & Human Development. “The intention of this program is to provide a rigorous education, academics and employment experience that will prepare these young adults to go out and work in the community in a job they are interested in that matches their strengths.”

Texas A&M announced its new 4yr program for students with disabilities.

NOD Statement on ‘Game of Thrones’ Ending Featured by TMZ

NOD issued a statement to popular culture outlet TMZ this week on the ending of hit HBO show Game of Thrones, and the drama’s depiction of disability following a flurry of social media activity on the subject. Felicia Nurmsen, our Managing Director of Employer Services, gave the following statement (WARNING: SPOILERS):

The National Organization on Disability has been thrilled to see disability featured in the hit HBO show Game of Thrones as an ongoing story thread. The series, though set in a long-ago realm of fantasy, has for eight years served as a mirror for society on many subjects, including disability. For most of their respective journeys, Tyrion Lannister and Bran Stark (the show’s most prominent characters with disabilities) are treated at best with pity, and at worst with revulsion and antipathy. Despite disdain and dismissal, each demonstrates grit, creativity, fortitude, wisdom, and courage in not only surviving the long winter, but also in rising to significant positions of leadership; an excellent parallel to the experience of people with disabilities in the workforce. In the moment that ‘Bran the Broken’ is named King of the Six Kingdoms, choosing Tyrion as his chief adviser, Game of Thrones (perhaps accidentally) adroitly captured the irony of disability in America: No matter how much we achieve, the overall impression of our community is fundamentally still one of brokenness. NOD has been working to change that narrative, and generational, landmark media properties like Game of Thrones help drive these conversations further—whether viewers liked the ending or not.

Click here to see the article on TMZ.

Looking Back at NOD’s Networking Roundtable | “Driving Innovation through ERGs”

RECAPPING: DRIVING INNOVATION THROUGH EMPLOYEE RESOURCE GROUPS
April 4th, 2019 | Hosted by L’Oréal USA

Today, 90 percent of the country’s Fortune 500 companies have ERGs. Many of these groups were founded as a response to discrimination, but in recent years, these groups have been increasingly recognized for their valuable contributions they bring to their employers, especially with regards to diversifying talent streams.

The NOD Corporate Leadership Council‘s Networking Roundtable, Driving Innovation through Employee Resource Groups, provided an in-depth look at businesses excelling at building disability inclusive cultures through their Employee Resource/Affinity Groups (ERGs/AGs).

  • The event, moderated by Karen Brown, featured opening remarks from NOD’s Carol Glazer, while L’Oréal USA’s Frédéric Rozé discussed his company’s commitment to workplace disability inclusion.
  • DiversityInc’s Shane Nelson dove into case studies from companies activating their ERGs to target new business opportunities.
  • Panelists, Cassie Liverance of L’Oréal, Laura Bailey from Capital One, John Sasso of EY, and Stephanie Magner-Tripp from New York Life, gave real life examples of how their companies’ ERGs are changing attitudes and actions from the inside.
  • Closing remarks were shared by L’Oréal USA’s Angela Guy and NOD’s Carol Glazer.

 

Welcome remarks by NOD President Carol Glazer

Welcome remarks by L’Oréal USA President & CEO Frédéric Rozé

CLC Members: See full video coverage of the event by logging in to our Members’ Only Portal and visiting the Resources page | Not a member? Find out about the many benefits of joining today!  

 

 

Trump’s Budget is Full of Cuts Aimed at People with Disabilities

Funding for the Special Olympics may have been restored, but many more important programs are still on the chopping block.

April 17, 2019 | The New York Times Op-Ed By Tom Ridge
Mr. Ridge is the chairman of the National Organization on Disability.

Gov. Ridge gesturing while speaking at a podium

Last month’s proposal from Secretary of Education Betsy DeVos to cut millions of dollars in funding for Special Olympics caused a public uproar and a bipartisan backlash fierce enough to force President Trump to restore it days later. That reversal was welcome. But it was also incomplete. Most Americans do not know that the 2020 budget is still full of cuts that aim directly at many other programs that support people with disabilities.

The Trump administration’s fiscal year 2020 budget would make cuts across multiple agencies and offices that serve Americans with disabilities, stripping them of essential resources. Of particular urgency to me and many of my colleagues are the devastating impacts that the weakening of these agencies would have on job seekers with disabilities.

Independent living centers, assistive-technology programs, supports for individuals living with brain injuries and family caregiver support services are among those programs and services on the chopping block. So too is the Office of Disability Employment Policy. This office, within the Labor Department, is the only nonregulatory federal agency that promotes policies and coordinates with employers and all levels of government to increase workplace success for people with disabilities. It also holds federal contractors to account for meeting certain hiring goals.

Combined, these cuts total in the tens of millions of dollars. Cutting funding to these critical programs — that turn tax consumers into taxpayers — is not only unjust but also fiscally foolish.

That’s especially true now, at a time when our nation is seeing historically low unemployment rates and employers need to find new sources for talent.

Work is one of the most important issues affecting the some 50 million Americans with disabilities. The Bureau of Labor Statistics reported in 2018 that roughly 30 percent of Americans ages 16 to 64 with a disability were employed, compared with nearly 75 percent of those without a disability. The unemployment rate for job seekers with disabilities is roughly 9 percent — more than double that of the nondisabled population.

Employment for Americans with disabilities remains one of the great unfulfilled promises of the 1990 Americans With Disabilities Act. The law has improved lives in many significant ways. And while some employers have taken important steps in inclusion and hiring, most are not fully tapping that rich talent pool of 20 million people with disabilities who are ready to work.

Just recently, the National Organization on Disability, which I have been privileged to lead for 13 years, joined with 12 of the largest, most politically influential disability organizations from across the country to work on behalf of policies that support disability employment.

It’s something that really ought to have happened much sooner. But each of our organizations — the National Down Syndrome Society, the American Association of People With Disabilities, the National Federation of the Blind and many others — has been focused on its own priorities. But when we sat around a table together we realized that the issue of employment connects us all. It remains one of the most vexing challenges facing the disability community today.

Fortunately, these groups have been able to put aside our disparate agendas and find common cause. We recognized that collectively, we represent a powerful political constituency of scores of millions of people.

When this coalition of disability organizations recently met with the labor secretary, he notably didn’t ask about political affiliations. He understood, as we do, that our issue cuts across party lines. The most important social and economic issues all do.

That’s why the funding must be restored by the administration. And I hope to see bipartisan support from Congress. Budget decisions that harm people with disabilities and their families will hurt our economy and weaken us all. Any business that hasn’t figured out how to benefit from the problem-solving abilities and the tenacity of people who spend their lives navigating a world that wasn’t built for them isn’t trying hard enough. We can help them.

I agree with Senators Bob Casey and Sherrod Brown, who recently wrote to the director of the Office of Management and Budget and said that any budget proposal by any administration should reflect the goals of the A.D.A.: equal opportunity, independent living, full participation and economic self-sufficiency. The exclusion of any group of people from our economy is not only a problem for those who’ve been excluded. It’s a scourge on our democracy that touches us all.

I urge the Trump administration to immediately restore this essential funding.

Tom Ridge, a former governor of Pennsylvania and the first secretary of homeland security, is the chairman of the National Organization on Disability. 

Read on The New York Times