Defining a health-disparity population of people with disabilities using Zoom meetings: The national institute of health (NIH) calls for the inclusion of disabled people in studies
Furthermore, the report calls for people with disabilities to be formally designated as a health-disparity population (a reference to groups who experience poorer health outcomes than the general population). This has already been done for a lot of people from all kinds of groups, except for those with low socio- economic status. Doing so would increase the representation of researchers with disabilities and the inclusion of people with disabilities in studies needed to identify and eliminate barriers to equitable health care, the report says.
The result was a study that gathered doctors, a mix of primary care physicians and specialists recruited from across the United States, into three focus groups on video conferences. Protected by anonymity — only first names or nicknames were used — the groups of eight to 10 doctors began to talk. At first, they were guarded but as the sessions were moderated, they began to speak more frankly. In their Zoom meetings, they could not see that Dr. Iezzoni was seated in a wheelchair.
According to a report, using the term reducing disability in the current mission statement of the National Institute of Health is a bad idea. The NIH should instead focus on enhancing health, lengthening life and reducing illness, the analysis adds.
People who have impairments in vision, mobility or hearing, have a psychological or mental illness or chronic condition are considered disabled. The disabled are the largest minority in the country, accounting for more than 27% of the adult population. Only a small percentage of researchers who have been funded by the National Institute of Health report having a disability.
The National Institute for Disability Studies (NIH): A Subgroup to discuss the 1990-1998 American Civil Rights Report on Disability, Health, Life and Death
The subgroup of the Director Working Group on Diversity was endorsed by the advisory committee after they read the 66-page report last month. Suggestions include an alternative mission statement, that would say: “To seek fundamental knowledge about the nature andbehaviour of living systems and the application of that knowledge to enhance health, lengthen life and reduce illness.”
The subgroup has co-chairs Lisa Iezzoni and Bonnielin Swenor, both of whom are from Baltimore, Maryland.
The NIH’s current mission statement is “to seek fundamental knowledge about the nature and behaviour of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability”. According to Iezzoni, the reference to reducing disability means eliminating people like Bonnielin and me. Iezzoni and Swenor have mobility constraints.
“We are asking for data and public sharing of that data,” says Swenor, “so that the community, policymakers can track and understand what has happened — and if it’s working or not.”
The killing of George Floyd created discussion of diversity, equity and inclusion which led to a rise in the disability civil rights movement.
“Disability only becomes a tragedy when society fails to provide the things we need to lead our lives — job opportunities or barrier-free buildings, for example,” she said. “It is not a tragedy to me that I’m living in a wheelchair.”
It was still a radical claim that disabled people didn’t see themselves, or their conditions, as something to be pitied. Or that they insisted what most held them back wasn’t their health condition but society’s exclusion — maybe attitudes that they were less capable to do a job, go to college or find romance; or a physical barrier, like a sidewalk without a curb cut.
The passage of the Americans with Disabilities Act in 1990 was a milestone in the evolution of what it means to be disabled, thanks to leaders like Heumann. She’d been hospitalized the previous weekend with breathing problems.
Heumann was a major American civil rights hero who remained little known until a flurry of attention in the last three years of her life. There was a co-authored book called Being Heumann: An Unrepentant Memoir of a Disability Rights Activist, that was released in February 2020 before the outbreak of the Pandemic.
The celebration of Heumann took off shortly after with the release of the documentary Crip Camp: A Disability Revolution. James LeBruch and Nicole Newnham discovered a forgotten film of a summer camp in upstate New York for children with disabilities and used it to explore issues of identity. A world that rejected the young people using wheelchairs but also had common ground and pride in them, is what the place they’re at. Heumann, who was a counselor at the camp at the time of the original film, quickly becomes the star of the documentary because she is smart and self-assured.
The San Francisco Butcher, a Child of the Fire, was a Critique of the California Disability Civil Rights Act of 1972: After Jimmy Nixon’s Nixon Revisited
In 1949, Judy, the daughter of a New York butcher and his wife, contracted polio. When she was 5 and it was time to go to kindergarten, her parents — German Jewish immigrants — went to register her but were turned away at the nearby public school.
Her mother, Ilse Heumann, fought to end the isolating and erratic hours — just a few hours a week — of home instruction and eventually Judy was allowed into a school building.
Years later, Heumann graduated from college where she studied to become a teacher. She was told that she could work as a speech therapist, since it was open to a woman in a wheelchair.
She was once again deemed a fire hazard. This time, in 1970, New York City’s Board of Education ruled that a teacher in a wheelchair would be unable to evacuate children during an emergency and denied her a teaching license.
In 1972, Heumann and a small group of demonstrators shut down traffic on Madison Avenue outside the Nixon reelection campaign headquarters. They wanted to call attention to Nixon’s veto of the Rehabilitation Act of 1972, which expanded programs to help people with disabilities.
The protesters forced the Carter administration to implement Section 504 of the Rehabilitation Act, which specified that no government agency, or even a private business, that accepted federal funds could discriminate against someone on the basis of their disability.
When the new administration of Jimmy Carter seemed unsure whether to act, disabled people took over a federal building in San Francisco. The rising disability civil rights movement gained national press attention after the 26 days of protest in 1977.
Heumann, then 29, emerged as a leader. When California congressmen convened a hearing at the occupied building and a federal official tried to reassure the protesters, Heumann did not let him off easy. “We will not allow the government to discriminate against people with disabilities.” We want the rule to be followed. We will accept no more discussion of segregation,” she said in a voice that quivered with emotion and indignation. “And I would appreciate it if you would stop shaking your head in agreement when I don’t think you understand what we are talking about.”
Section 504 became a model for the ADA which would extend the principles of non-discrimination to all public accommodations, employment, transportation, communications and access to state and local government programs.
She wrote in her book that she was excited to be on the White House lawn when the ADA was signed into law. Although she had criticized the legislation that she thought didn’t go far enough to help people, like her, who needed assistance from aides to live at home.
The assistant secretary of education for the federal education programs for students with disabilities was appointed by Clinton in 1993, to be the woman who had been declared a fire hazard too dangerous to be a student or teacher.
As a special assistant to Secretary of State Hillary Clinton in the Obama administration, she was in charge of spreading civil rights ideas around the world.
Source: https://www.npr.org/2023/03/04/1161169017/disability-activist-judy-heumann-dead-75
“We’re simmering to a boil”: A tribute to the late Amy Heumann, an advocate for disability rights in the 21st century
Heumann appreciated the growing recognition of her work and the way demand for her time had grown starting in 2020. She was a mentor to many young activists around the world. She started a podcast and traveled or, during the pandemic appeared on Zoom, to keep up with a growing demand to hear her speak.
“We’re simmering to a boil,” she liked to say about seeing her work for the disability civil rights movement spread into the mainstream and across the globe.