INTERNATIONAL DAY OF PEOPLE WITH DISABILITIES (IDPWD):
Since 1945, the United Nations (UN) has outlined and reiterated its commitment to calling for the creation of inclusive, accessible and sustainable societies and communities – most notably with the adoption of the Universal Declaration of Human Rights in 1948. Over time, the UN has honed its focus on promoting the well-being and welfare of people living with disabilities, and in 1992 called for an international day of celebration for people living with disabilities to be held on December 3 each year.
NOD Founder and first Chairman, Alan Reich, played an important role in the UN’s focus on disability issues, including as the first wheelchair user to ever speak before the General Assembly in 1981.
The International Day of People with Disabilities is not owned by the UN – it is owned by everyone: people, organisations, agencies, charities, places of learning – all of whom have a vital role to play in identifying and addressing discrimination, marginalization, exclusion and inaccessibility that many people living with disabilities face. International Day of People with Disabilities is one day on the international calendar, yet it symbolizes the actions we should take every day, in order to create diverse and accepting communities.
WHAT IS IDPWD FOR?
Reflection – to look at our own past individual and collective actions, and to identify our goals for the future;
Celebration – to recognize and value the diversity of our global community, and to cherish the role we all play, regardless of our abilities;
Learning – to understand and learn from the experiences of people with living with a disability;
It is a day for optimism – to look towards the future and the creation of a world where a person is not characterized by their disabilities, but by their abilities;
Action – where all people, organisations, agencies and charities not only show their support for International Day of People with Disabilities, but take on a commitment to create a world characterized by equal human rights.
• Use #IDPWD, #thefutureisaccessible, and #LookCloser to engage in the global conversation on social media. Share your stories as people with disabilities and allies at work or in the community
On Friday, November 15th, 2019, NOD Chairman and former Pennsylvania Governor, Tom Ridge, sat before the U.S. Commission on Civil Rights representing the National Organization on Disability. There to discuss the abolition of sub-minimum wages for Americans with disabilities, Gov. Ridge’s remarks touched upon the dignity of work, and the right of all Americans to participate in our national prosperity towards independence and financial security.
Gov. Ridge presents to the Civil Rights Commission
Read the full text of Gov. Ridge’s remarks, below.
Remarks on Behalf of National Organization on Disability To the U.S. Commission on Civil Rights November 15, 2019
Good afternoon. First let me thank you for the opportunity to appear before you today. It is an honor to appear as chairman of the National Organization of Disability, which I have been privileged to serve since shortly after I left public service in 2005.
I also want to acknowledge the comments of my fellow panelists for their expertise and remarks.
The National Organization on Disability is a private, nonprofit organization that promotes the full participation and contributions of America’s 57 million people with disabilities n all aspects of life. We primarily focus on increasing employment opportunities for the nearly 80% of working age Americans with disabilities who are not employed.
The core civil rights vision of the Americans with Disabilities Act and other disability rights laws inform the approach NOD takes to improving the lives of children and adults with disabilities. The historic Civil Rights Act of 1964 unequivocally told the world that discrimination based upon race, color, religion, sex, or national orientation would not be tolerated within America. The ADA expanded the Civil Rights Act’s powerful and historic protections to include people with disabilities. All Americans should have the opportunity to pursue their dreams.
Over the last few months, I’ve had the privilege, through my work with NOD, to meet with many of the largest, most politically influential, and most effective disability organizations in America today. We’ve put aside our specific agendas and individual priorities and found common cause. Collectively, we represent a powerful political constituency. We concluded that we needed to collaborate to bring more workers with disabilities into the competitive labor market with fair wages. We concluded that we would work together to phase out section 14(c) of the Fair Labor Standards Act (FLSA), which sanctions paying individuals with disabilities less than minimum wage. We concluded this is a civil rights issue and that 14(c) is inconsistent with the fairness and equal opportunity guaranteed to every citizen in the Unites under existing legislation.
Some people working under 14(c) certificates earn mere pennies per hour. We see this clearly as a Civil Rights issue. No one, regardless of creed, race, gender, age, or disability, should be subject to such economic discrimination. This system tells Americans with disabilities and their families that they are not worth the same as other Americans, that society values them and their labor less.
This practice is also contrary to the Americans with Disabilities Act, which sought to achieve fairness by providing statutory protection of the rights of Americans with disabilities to compete on a level playing filed with their non-disabled peers.
Back in 1938, when the FLSA legislation was first passed, everyone assumed that a worker with a disability was less productive than a non-disabled worker. In retrospect, a flawed assumption. We want to be fair to the intent of the original legislation, which was to provide, at minimum, individuals with disabilities an opportunity to enter the workforce.
80 years later, however, the law still contains Section 14(c). Now we know that workers with disabilities, given equal opportunity and appropriate tools or technologies, can perform as well as their non-disabled counterparts.
NOD has proof of this. Each year, NOD recognizes businesses through their Leading Disability Employer Seal™. This applauds organizations that are leading the way in disability inclusion and tapping into the many benefits of hiring talent with disabilities, including high rates of productivity and dedication, and greater employee engagement across the workforce.
The experience of these companies confirms that individuals with disabilities perform far beyond typical expectations and as well as their non-disabled peers.
Some well-intentioned advocates express concern that elimination of 14(c) would severely limit opportunities for many Americans with disabilities who may use workshops as both a place for meaningful social interaction and a respite for caregivers. We understand their concern, but we remind them there are other options available. 14(c) is not a funding program, it is a certificate. Federal funding will still be available to support individuals with disabilities.
Person-centered planning, where funding goes directly to the individual with a disability instead of to a 14(c)-certificate holding agency is an excellent option. Person-centered planning gives an opportunity for individuals with disabilities to have a greater voice in their life direction. Let me give you a wonderful example. NOD’s executive director Carol Glazer’s son, Jacob, has a severe disability. He also has meaningful employment.
Thanks to a person-centered planning model, Jacob works part-time, above minimum wage at the NBA store. Medicaid pays for his job coach at the store. Jacob also volunteers in integrated settings the rest of the time and takes weekly classes in art, music, cooking, and fitness. We believe that transitioning federal supports toward a person-centered planning model will give people more choices than they realize, like Jacob has choices.
Individuals with disabilities, parents, and caregivers can then choose to use federal funding for job coaches, supports, or ultimately at agencies. Eliminating 14(c) would give individuals with disabilities, their families, and the organizations that support them greater flexibility.
All this being said, we understand that transitioning away from our current model will take time and resources. We believe that supports to states and providers to transition away from 14(c) are necessary to help make this successful.
In 2016, the Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities released a report. As you are aware, the Advisory Committee was established under the Workforce Innovation and Opportunity Act. The Committee was comprised of government officials, self-advocates, providers of employment services, representatives of national disability advocacy organizations, experts with a background in academia, employer representatives, and others with related expertise. The Advisory Committee called on Congress to allow for a multi-year, well-planned phase out of Section 14(c). It detailed that the federal government should assist with building the capacity of service systems to provide alternatives to those provided for under programs using a 14(c) certificate.
Similarly, the National Council on Disability’s released a report, “National Disability Employment Policy, From the New Deal to the Real Deal: Joining the Industries of the Future.” The National Council on Disability is an independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies that affect people with disabilities. NCD also recommends phasing out of 14(c) while providing increased capacity supports as well. It recommended that the Department of Labor issue a two-year moratorium on any new 14(c) certificates, and that oversight of the existing 14(c) system be increased until the phase-out is complete.
These two established, respected groups, are absolutely right. The federal government should phase out 14(c) AND provide supports to ensure the transition is smooth. That is why the National Organization on Disability, along with the more than dozen groups we have joined together with, support the Transformation to Competitive Employment Act introduced by Senators Casey and Van Hollen and Representatives Bobby Scott and Cathy McMorris Rodgers. This legislation was carefully crafted to phase-out 14(c) while providing resources to states, services providers, subminimum wage certificate holders, and other agencies to ensure inclusive wraparound services for individuals with disabilities. These resources could be used to help providers create new models of workforce opportunities for individuals with disabilities that do not rely on subminimum wage.
In 2019, there is no excuse for treating an entire class of workers differently from others based solely on the characteristic of disability. Such treatment is discriminatory, just as it would be if applied to individuals of a specific race, gender, or sex. All Americans, including those with disabilities, must have a chance to have the financial freedom and security we all desire. Their sense of self-worth and the value of their labor requires society to protect their right to secure employment at least at minimum wage. After 80 years, phasing out Section 14(c) is a step that we can take right now to move closer to that goal. It is long past time to take this fair, commonsense step in the march to freedom for Americans with disabilities.
Thank you for giving me the opportunity to share these thoughts with you – and yes – thank you for your public service.
By Kelly Tyko, USA TODAY | Published 9:56 p.m. ET Oct. 7, 2019
The U.S. Supreme Court’s decision to not hear Domino’s petition on whether its website is accessible to the disabled is considered a loss for the pizza giant and a win for disability advocates.
The case was one of a long list of those the Supreme Court announced it wouldn’t hear, and as is usual the high court made no comment in declining to take the case. Monday was the Supreme Court’s first day of arguments after its summer break.
The order to not hear the case keeps in place a January ruling by the 9th U.S. Circuit Court of Appeals, which ruled that Domino’s and other retailers must make its online services accessible. It also means the case is expected to go to trial.
“Although Domino’s is disappointed that the Supreme Court will not review this case, we look forward to presenting our case at the trial court,” Domino’s said in a statement posted on its website Monday. “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.”
Photo courtesy of Domino’s Pizza
Guillermo Robles, who is blind, claimed in U.S. District Court in California that the pizza maker violated the federal disability requirements because he couldn’t order a pizza on his iPhone: The website didn’t work with his screen-reader software.
“In today’s tech-savvy world, blind and visually-impaired people have the ability to access websites and mobile applications using keyboards in conjunction with screen access software that vocalizes the visual information found on a computer screen or displays the content on a refreshable Braille display,” the lawsuit argued.
In January, the 9th U.S. Circuit Court of Appeals ruled that Domino’s and other retailers must make its online services accessible.
Robles’ attorney, Joe Manning, said in a statement to CNBC Monday that the Supreme Court’s decision was “the right call on every level.”
“The blind and visually impaired must have access to websites and apps to fully and equally participate in modern society – something nobody disputes,” he said. “This outcome furthers that critical objective for them and is a credit to our society.”
Domino’s along with the National Retail Federation and Retail Litigation Center urged the Supreme Court to hear the case because the appeal court’s ruling “stretched the definition too far by deciding that websites and mobile applications must be judged as public accommodations rather than just considered as one of many ways in which a consumer might access a retailer’s offerings.”
According to the pizza company, a customized pizza can be ordered in-store, by phone, text, social media and voice-activated devices like Alexa and Google Home. Domino’s says it is developing a proprietary voice-ordering digital assistant, Dom.
“With a growing number of website accessibility cases being filed and conflicting rulings from circuit courts across the country, this is an issue that needs the clarity of a Supreme Court ruling,” said Stephanie Martz, the retail federation’s senior vice president and general counsel, in a statement. “Without guidance on what rules should apply, litigation will continue to divert resources from actually making websites accessible.”
Domino’s said in its statement that a nationwide standard would “eliminate the tsunami of website accessibility litigation that has been filed by plaintiffs’ lawyers exploiting the absence of a standard for their own benefit.”
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, 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.
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
WASHINGTON — 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.
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 | 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)
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 career as an advocate for the disabled lasted more than four decades and influenced several presidential administrations. Her success in reshaping Chicago’s policies for the disabled formed the basis for national and international legislation as Ms. Bristo, in her motorized wheelchair, traveled around the world to promote her vision for independent living.
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 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.”
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.
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).
PROGRAM:
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
Corporate Leadership Council Members:See more video and access exclusive resources in the Members’ Only Portal.
