Wall Street Journal Quotes NOD’s Howard Green On Power of Eye Tracking Technology

Doctors Look to Eye-Tracking to Improve Care

Startups are using technology that follows the movement of the eye to diagnose nearsightedness and help people with disabilities.

David M. Ewalt

From the Wall Street Journal

For Pat Quinn, eye-tracking technology is a lifeline to the world. Mr. Quinn, who suffers from amyotrophic lateral sclerosis, or ALS, is almost completely paralyzed. To speak, write, change the television channel or turn on the lights in his Yonkers, N.Y., home, he flicks his eyes over a computer screen. The device has an infrared camera below the display; he can “click” on files, links or letters on a keyboard by looking at them.

“I honestly don’t know how patients remained active without this. I use it every second I am awake,” said Mr. Quinn, 36, through a voice synthesizer. Mr. Quinn works as an advocate for patients with ALS; in 2014, he co-created the “Ice Bucket Challenge,” a viral social-media campaign that raised $115 million for research into ALS, also known as Lou Gehrig’s disease, according to the ALS Association.

Mr. Quinn’s device is one example of how eye-tracking technology is surfacing in the medical field. Health care professionals are beginning to use it to teach medical students, improve surgeries and diagnose issues such as nearsightedness. One day, the technology may even help treat eye diseases.

Assistive computers and speech-generating devices like Mr. Quinn’s are not new. The physicist Stephen Hawking used one for decades, but that device and most others like it required patients to select words using a joystick or physical switch. Mr. Hawking controlled his computer by twitching a cheek muscle, a painstaking method that made it increasingly difficult to communicate as his disease progressed.

In contrast, Mr. Quinn’s device, made by Stockholm-based Tobii, is quicker, more accurate and easier to operate, says the company. Tobii was founded in 2001 after John Elvesjö, then an engineering student, built a computerized camera that could count bubbles in liquids. After realizing it could also track his pupils, he began developing an eye-tracking system that could control a computer. The team initially positioned its system for use in scientific research but quickly identified a market in health care. “We had experts approach us at trade shows and conferences saying, ‘Do you understand how much good this could do for people with disabilities?’” said Henrik Eskilsson, chief executive and co-founder.

“Going into the 21st century, this technology will allow people with all kinds of disorders to go to work when they hadn’t been able to do that in the past,” said Howard Green, deputy director of professional services for the National Organization on Disability.

Pat Quinn in his wheelchair with eyetracking device
Pat Quinn, the co-creator of the ‘Ice Bucket Challenge,’ a viral social-media campaign that raised funds for research into ALS, gives a speech using a Tobii device. Photo: Pat Quinn

The technology faces some hurdles to mainstream adoption, including the price. Tobii’s flagship speech-generating devices, like the one Mr. Quinn uses, retail for $14,000. Most patients are able to subsidize that cost using private health insurance or Medicare, the company says.

Consumers may balk at the potential invasion of privacy. But, experts say, eye-tracking devices only “see” the area around the eyes in near-infrared, and use that to calculate the coordinates of the user’s gaze. They don’t save or transmit images, so they can’t be used for spying. A computer equipped with eye-tracking hardware knows what you type or what you click, similar to a computer equipped with a keyboard or mouse.

Eye-tracking technology has been around for decades, but the devices were complicated, said Werner Goertz, senior director at the market research firm Gartner Inc. Today, companies such as Tobii are selling technology that allows other companies to add eye-tracking capabilities to their own products, allowing startups in industries including health care, retail, automotive and consumer electronics to test it out. “You just buy it off the shelf and stick your own application on top of it,” said Mr. Goetz.

One Tobii customer, Atlanta-based ControlRad, says it has developed a system that uses eye-tracking hardware to help control X-ray scanners, reducing patient and doctor radiation exposure during surgery. Typically, when surgeons X-ray patients during procedures, they must constantly scan a region of the body with large doses of radiation to produce high-resolution images. ControlRad’s product uses low-dose radiation on the body, focusing the high-energy radiation only at the point where the doctor is looking. The company is seeking approval from the U.S. Food and Drug Administration and hopes to release the system next year.

Medical schools are also using eye-tracking devices to help teach future doctors. At the German Heart Center in Berlin, instructors wear glasses equipped with eye-tracking cameras while they perform complicated procedures including heart-bypass surgeries. Students watching the operation on a monitor can see what the doctor is looking at, without stopping the procedure to gesture or point.

Other eye-tracking applications are used for diagnosis. The Israeli company NovaSight sells a vision-assessment system that requires patients wear LCD glasses and watch 20- to 60-second videos on an eye-tracking tablet. The test can identify vision impairments including myopia, or nearsightedness, as well as color blindness and contrast sensitivity, according to Moshe Barel, vice president of sales and marketing. NovaSight has signed an agreement with Essilor International, the French ophthalmic optics company, to sell the product to hospitals and vision clinics.

 

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NovaSight’s product could help address weaknesses of current vision screenings, which do not mimic real life, said Dr. Rajat Agrawal, an ophthalmologist and chief executive of the eye-health nonprofit Retina Global. “You sit in a room with controlled lighting and look at a chart at a fixed distance while your head is still,” he said. Watching videos on a tablet replicates a more natural, real-world activity and doesn’t require the user to self-report. “It could play a significant role in years ahead in terms of visual screening,” said Dr. Agrawal, who is not affiliated with NovaSight.

Researchers at Texas Tech University and the University of Massachusetts, Boston, have used eye-tracking headsets to study autism spectrum disorders in children. When most children look at another person’s face, their gaze tends to focus on the eyes and nose; autistic children’s gazes wander. The research could eventually lead to systems that allow doctors to identify neurological impairments in children who might otherwise be too young to diagnose.

The next step for eye-tracking systems may be the treatment of disease. NovaSight is testing hardware that it hopes will be able to cure amblyopia, better known as lazy eye. Standard treatments require patients to wear an eyepatch for months so their affected eye gets stronger with use. With NovaSight’s system, they watch a few minutes of videos every day on a tablet equipped with eye-tracking hardware. The videos are precisely blurred so the patient’s lazy eye has to compensate, according to the company. Mr. Barel said the system has passed a small clinical trial in Israel and will undergo a larger trial in the U.S. next year.

Mr. Goetz of Gartner expects more eye-tracking products to hit the market in 2020, thanks to the increased availability of low-cost hardware and basic technology that is safe and reliable. Meanwhile, Mr. Quinn remains an evangelist for his eye-tracking tablet. “I’m still growing and having amazing moments in my life, and I couldn’t do it without this technology,” he said.

Darren Walker Receives First Annual Alan Reich Award

On September 26th, 2019, NOD presented Darren Walker with the first annual Alan Reich Award, recognizing a leader who has demonstrated commitment and excellence in the area of disability inclusion. Mr. Walker’s selection was based on his stewardship of the Ford Foundation’s nascent disability inclusion investment program, and his co-creation, with Richard Besser of the Robert Wood Johnson Foundation, of the Presidents’ Council on Disability Inclusion in Philanthropy.

In this video tribute, Darren accepts the award and speaks to the importance of disability inclusion work and the Ford Foundation’s relationship with NOD

Supreme Court allows blind people to sue retailers if their websites are not accessible

Gene J. Puskar / Associated Press

The Supreme Court cleared the way Monday for blind people to sue Domino’s Pizza and other retailers if their websites are not accessible.

In a potentially far-reaching move, the justices turned down an appeal from Domino’s and let stand a U.S. 9th Circuit Court of Appeals ruling holding that the Americans With Disabilities Act protects access not just to restaurants and stores but also to the websites and apps of those businesses.

Guillermo Robles, who is blind, filed suit in Los Angeles three years ago and complained he had been unable to order a pizza online because the Domino’s website lacked the software that would allow him to communicate. He cited the ADA, which guarantees to persons with a disability “full and equal enjoyment of the goods and services … of any place of public accommodations.”

Lawyers for Domino’s agreed the provision applied to its bricks-and-mortar pizza locations, but not its website.

Last year, however, the 9th Circuit ruled for Robles and said the law applied to its online services as well as the stores.

“The ADA mandates that places of public accommodation, like Domino’s, provide auxiliary aids and services to make visual materials available to individuals who are blind,” the appeals court said in January.

The U.S. Chamber of Commerce and business groups that said they represented 500,000 restaurants and 300,000 businesses joined in an appeal urging the high court to review the 9th Circuit’s decision. They complained of a “tsunami of litigation” and worried that judges nationwide would see the appeals court’s decision as “imposing a nationwide website-accessibility mandate.”

But without comment or dissent on Monday, the high court said it would not hear the case of Domino’s Pizza vs. Robles.

This is not a formal ruling upholding the 9th Circuit decision, and the justices could agree to take up the issue later if lower courts are divided. But for now, the court’s action strongly suggests that retailers will be required to make their websites accessible.

Joseph R. Manning Jr., a Newport Beach lawyer who represented Robles, said the high court made “the right call. There can be no debate that the blind and visually impaired require accessible websites and mobile apps to function on an equal footing in the modern world.”

Mark Whitley, president of Easterseals Southern California, praised the high court for “supporting the values … the ADA was built upon.”

Domino’s and the National Retail Federation issued statements saying they were disappointed in the court’s refusal to hear the case. The 9th Circuit sent the case back to a district judge in Los Angeles to decide whether Robles suffered discrimination.

“We look forward to presenting our case at the trial court. We also remain steadfast in our belief in the need for federal standards for everyone to follow in making their websites and mobile apps accessible,” Domino’s said its statement.

Workforce Inclusion and Talent: Changing the Disability Paradigm with Carol Glazer of the National Organization on Disability

Oct 07, 2019 – In 2018, the unemployment rate for those with a disability was more than twice the rate of those without. How can employers build a more inclusive workforce?

Carol Glazer, President of the National Organization on Disability, discusses efforts to ensure people with disabilities live a well-rounded life, including access to meaningful employment.

Hosted by: Sheila Hyland Produced by: National Newsmakers Team

View on Comcast Newsmakers

These are the leading disability employers in 2019

These employers are dedicated to disability inclusion and recognize the benefits of hiring workers with disabilities.

October 1, 2019 | Lily Martis, Monster contributor

2019 Leading Disability Employer SealWhile October is National Disability Employment Awareness Month, unemployment for adults with disabilities is an epidemic in the workforce that’s seen all year, every year.

The unemployment rate for workers with disabilities in 2018, according to the Bureau of Labor Statistics (BLS), was 8%—more than double that for those with no disability. While the unemployment rate for workers with disabilities has declined over the years—it was 14.5% in 2009, when the unemployment rate for persons with a disability was first reported by the BLS—there is still much more that needs to be done to help workers with disabilities find jobs.

Fortunately, some best-in-class employers are already leading the way in disability inclusion in the workplace. Every year, the National Organization on Disability (NOD) recognizes these top employers with a seal for not only leading the way in disability inclusion, but also for tapping into the many benefits that come with hiring talent with disabilities, which include high rates of productivity, strong dedication, and greater engagement at work.

Below are the leading companies with jobs for people with disabilities in 2019. Listed in alphabetical order, these companies run the gamut from banks and insurance providers to manufacturers and health care companies.

Click through the links below to see if one of these companies would be a good fit for you.

Companies hiring workers with disabilities now:

  1. Accenture
  2. Aetna
  3. Anthem
  4. AT&T
  5. Barclays
  6. Department of Veterans Affairs Beckley Medical Center
  7. Blue Cross Blue Shield of Michigan
  8. Boeing
  9. Capital One
  10. Colorado Springs Utilities
  11. Comcast
  12. Cox Communications
  13. Disney
  14. Dow
  15. DTE Energy
  16. DXC Technology
  17. Eli Lilly and Company
  18. Ernst & Young (EY)
  19. FirstEnergy
  20. General Motors
  21. The Hershey Company
  22. Hilton
  23. Horizon BlueCross BlueShield of New Jersey
  24. Humana
  25. Idaho National Laboratory
  26. Kaiser Permanente
  27. KeyBank
  28. KPMG
  29. Lockheed Martin
  30. L’Oreal
  31. Marriott International
  32. Mayo Clinic
  33. Merck
  34. MGM Resorts
  35. Moffitt Cancer Center
  36. National Grid
  37. National Security Agency
  38. Naval Undersea Warfare Center, Keyport Division
  39. New Editions Consulting
  40. Northrop Grumman
  41. Old National Bank
  42. Procter & Gamble
  43. Project Hired
  44. Prudential Financial
  45. PwC
  46. Randstad
  47. Rangam Consultants
  48. Reed Smith
  49. SEI
  50. Sempra Energy
  51. Skookum Contract Services
  52. TD Bank
  53. Tennessee Valley Authority (TVA)
  54. TIAA
  55. T-Mobile
  56. S. Bank
  57. The Viscardi Center
  58. The Wehrman Collaborative (WeCo)
  59. Wells Fargo

View on Monster

ABC Interview: Actor Danny Woodburn Advocates for People with Disabilities

Woodburn ABC still

September 27, 2019 | ABC 7 WJLA — Actor and disability advocate Danny Woodburn joined “Let’s Talk Live,” a Washington, D.C.-based morning show on the ABC Network, to tell share how the National Organization on Disability is recognizing 59 organizations for their outstanding hiring and employment practices for people with disabilities.

“It was phenomenal!” Danny Woodburn, who hosted NOD’s Leading Disability Employers Dinner said. “The purpose of the dinner was to acknowledge, recognize those companies—59 to be exact—with outstanding records for the hiring and the employment of people with disabilities.”


Learn more:

NOD Announces the 2019 ‘Leading Disability Employers’

Arlington, VA (September 26, 2019) – The National Organization on Disability (NOD) today announced fifty-nine organizations that have been named 2019 NOD Leading Disability Employers™. Now in its fourth year, the NOD Leading Disability Employer seal recognizes companies that demonstrate exemplary employment practices for people with disabilities. This annual recognition is designed to commend those organizations that are leading the way in disability hiring and to encourage additional companies to tap into the many benefits of hiring talent with disabilities, including strong consumer preference for companies that employ individuals with disabilities and greater employee engagement across the workforce.

The winning organizations were announced at NOD’s Corporate Leadership Council Annual Forum, Shifting the Talent Paradigm: Inclusive Culture for a Modern Workforce, hosted by lead sponsors PwC and Spectrum.

“These winning organizations understand that by harnessing the talents of people with disabilities, they reap the benefits of a more diverse and more productive workforce,” said NOD Chairman Governor Tom Ridge.  “The preeminent challenge before us is to ensure that people with disabilities enjoy full opportunity for employment, enterprise and earnings, and that employers know how to put their talents to work. These 59 organizations certainly have demonstrated they are doing just that, and we applaud their leadership and thank them for their commitment to hiring people with disabilities.”

The 2019 NOD Leading Disability Employers are:

Accenture

Aetna

Anthem, Inc.

AT&T

Barclays

Beckley Veterans Affairs Medical Center

Blue Cross Blue Shield of Michigan

The Boeing Company

Capital One Financial

Colorado Springs Utilities

Comcast NBCUniversal

Cox Communications

The Walt Disney Company

The Dow Chemical

DTE Energy

DXC Technology

Eli Lilly and Company

Ernst & Young, LLP

FirstEnergy

General Motors

The Hershey Company

Hilton Worldwide

Horizon Blue Cross Blue Shield of New Jersey

Humana Inc.

Idaho National Laboratory

Kaiser Permanente

KeyBank

KPMG LLP

Lockheed Martin Corporation

L’Oréal USA

Marriott International, Inc.

Mayo Clinic

Merck

MGM Resorts International

Moffitt Cancer Center National Grid

National Grid

National Security Agency

Naval Undersea Warfare Center (NUWC) Division, Keyport

New Editions Consulting, Inc.

Northrop Grumman

Old National Bank

Procter & Gamble

Project HIRED

Prudential Financial

PwC

Randstad

Rangam Consultants Inc.

Reed Smith LLP

SEI Investments Company

Sempra Energy

Skookum Contract Services

TD Bank

Tennessee Valley Authority (TVA)

TIAA

T-Mobile

U.S. Bancorp

The Viscardi Center

The Wehrman Collaborative (WeCo)

Wells Fargo & Company

The NOD Leading Disability Employer seal is awarded based on data furnished by companies in response to the NOD Disability Employment Tracker™, a free and confidential assessment that benchmarks companies’ disability inclusion programs in the following areas:

  • Climate & Culture
  • People Practices
  • Talent Sourcing
  • Workplace & Technology
  • Strategy & Metrics

While the Tracker is confidential, organizations may opt to be considered for the NOD Leading Disability Employer seal. Responses are scored, taking into account both disability employment practices and performance. Scoring prioritizes practices that are associated with increased disability employment outcomes over time, and companies receive additional points based on the percentage of people with disabilities in their workforce.

To be considered for the 2020 NOD Leading Disability Employer seal, companies must complete the Disability Employment Tracker during the qualifying window.

Sign up to be notified when the 2019 Disability Employment Tracker opens this October. 

Steering the Winds of Change: A Summit on Leadership in Business, Academia, the Military, and Government

59 Companies Leading the Way in Hiring Talent with Disabilities Are Honored

National Organization on Disability Event also Featured Actors and Disability Advocates Danny Woodburn (Seinfeld) and Robert David Hall (CSI: Crime Scene Investigation)

NEW YORK (September 26, 2019) – More than 200 diversity and inclusion leaders from companies around the country gathered at the National Organization on Disability’s (NOD) Annual Forum and Dinner, entitled Shifting the Talent Paradigm: Inclusive Culture for a Modern WorkforceSponsored by Lead Partners PwC and Spectrum, the all-day forum explored the best change management tactics that corporate leaders can deploy to create a more diverse and inclusive culture. Senior managers heard from executives and experts on the most effect tools and tactics to create an inclusive culture, as well as the leadership skills and personal attributes needed to lead a culture change.

Later in the evening, an awards dinner was held featuring actors and disability advocates Danny Woodburn (Seinfeld) and Robert David Hall (CSI: Crime Scene Investigation). Civic and business leaders also joined in the celebration, including Gov. Tom Ridge, first Secretary of Homeland Security and NOD Chairman, and DiversityInc’s Chairman and Founder Luke Visconti, who serves as the NOD Vice Chairman.

“Events such as this one hosted by the National Organization on Disability are critical because the subject of diversity and inclusion is often exclusive of people with disabilities,” said Woodburn, who serves as co-vice chair of the SAG-AFTRA People with Disabilities Committee. “This is particularly personal for me and my colleagues in Hollywood, because although people with disabilities make up more than 20 percent of our population, they are still significantly under-represented on television and film. Compounding the problem is the fact that even when characters with disabilities are featured on the small screen, they are far more too often played by actors without disabilities. This creates a 98% unemployment rate in my business, well above the national average of 67% for people with disabilities.”

“Danny and I have worked together for years to support opportunities for actors with disabilities, like us,” said Hall, a longtime NOD board member. “So we are privileged to attend events like this one that recognizes employers who not only embrace hiring people with disabilities, they see it as fundamental to their success. It’s a message we need to amplify in Hollywood.”

Starting a new tradition, NOD honored two individuals with special awards. The Kaitlin A. Geraghty Memorial Prize was given to Deanna Ferrante, a rising student in the University of Massachusetts-Amherst Class of 2020. Named in honor of the late NOD intern who was much admired and missed, this award is bestowed to an up-and-coming disability advocate who shares Kaitlin’s passion for working towards the full inclusion of people with disabilities.

Darren Walker, President of the Ford Foundation, was the inaugural honoree of the Alan A. Reich Award, for enshrining disability inclusion into all of the organization’s operations—from its building accessibility to its grant making. Given to an established leader who is advancing disability rights, this award is named in honor of NOD’s founder, who helped spark a movement to ensure people with disabilities were represented equally in all aspects of life.

Then, 59 organizations were honored as the 2019 NOD Leading Disability Employers™ for their exemplary hiring and employment practices for people with disabilities. Now in its fifth year, the NOD Leading Disability Employer Seal is awarded to the top performers on NOD’s Disability Employment Tracker™, a free and confidential assessment that benchmarks companies’ disability inclusion programs.

“These winning organizations understand that by harnessing the talents of people with disabilities, they reap the benefits of a more diverse and more productive workforce,” said NOD Chairman Governor Tom Ridge. “The preeminent challenge before us is to ensure that people with disabilities enjoy full opportunity for employment, enterprise and earnings, and that employers know how to put their talents to work. These 59 organizations certainly have demonstrated they are doing just that, and we applaud their leadership and thank them for their commitment to hiring people with disabilities.”

About the Leading Disability Employer Seal™ + Disability Employment Tracker

To see current and past winners of the NOD Leading Disability Employer seal, visit www.NOD.org/seal.

To be considered for the 2020 NOD Leading Disability Employer seal, companies must complete the free and confidential Disability Employment Tracker assessment during the qualifying window.

For more information and to sign up, visit www.NOD.org/tracker.

“Seinfeld” actor’s mission to raise awareness about disability rights

Sept. 26, 2019 – Washington, D.C. – Danny Woodburn shared his mission to raise awareness for inclusion and understanding of people with disabilities.  Later in the day Woodburn will host NOD’s Annual Forum + Dinner, where the 2019 NOD Leading Disability Employers™ will be recognized for their exemplary hiring and employment practices for people with disabilities. On Good Day DC, Woodburn shared a few of the local employers that earned the title.

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.”