Doctors don’t want patients with disabilities
Trans-NIH approach to systemic ableism: Zoom meetings with doctors in the U.S. Center for Disease Control and Research
“We want to prop up a trans-NIH approach to tackle systemic ableism, similar to their approach to address racism,” says Swenor. The report shows how difficult it is for people with disabilities to fully participate in the scientific workforce. These include an inability to access laboratory facilities and conferences, a lack of accessible accommodation and the threat of discrimination, which makes people reluctant to disclose invisible disabilities.
The result of the study was to include doctors, a mix of primary care physicians and specialists recruited from across the US, in 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. They were guarded at first, 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.
The use of “reducing disability” in the current mission statement of the US National Institutes of Health (NIH) risks perpetuating ableist stereotypes, according to a report. The analysis says that theNIH ought to focus on health, lengthening life and reducing illness.
The term disabled encompasses people who experience impaired vision, mobility or hearing, have a psychological or mental illness or chronic condition, are neurodiverse or have learning disabilities. The disabled are the single largest minority group in the US, making up 27% of the population. Yet fewer than 2% of NIH-funded researchers report that they have a disability.
Diversity in the Biomedical-Research Workforce: Implications for the Future of Disability Civil Rights and the Life of a Young, Blind Person
The director working group on diversity, created in response to anNIH report about diversity in the biomedical-research workforce, received the endorsement of the advisory committee after the report was published. Suggestions include an alternative mission statement: “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.”
The subgroup’s three co-chairs include Lisa Iezzoni, a health-services researcher at Harvard Medical School in Boston, Massachusetts, and Bonnielin Swenor, director of the Johns Hopkins University Disability Health Research Center in 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”. Iezzoni says that its reference to reducing disability “means eliminating people like Bonnielin and me”. Swenor is visually impaired and Iezzoni has 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.”
In July of 2020 I and a lot of others phoned Judy to tell her about the 30th anniversary of the ADA. For NPR, I got Judy to share wisdom with a young activist, Imani Barbarin, who’d been born just four months before the ADA became law. Judy, who was working to spread knowledge of disability civil rights to the moment she died, noted the importance of the new directions of young activists like Barbarin who don’t see the ADA as a capstone of rights, but as just a floor for achieving equality.
She said that disability becomes a tragedy when society fails to provide things we need to lead our lives. “It is not a tragedy to me that I’m living in a wheelchair.”
It was still radical to say that disabled people wouldn’t see themselves or their conditions as something to be ashamed of. 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 Americans with Disabilities Act, which was passed three years later in 1990 and was a landmark, came about thanks to leaders like Heumann, who died suddenly at the age of 75. She’d been hospitalized the previous weekend with breathing problems.
Heumann, the major American civil rights hero, became famous in the last three years of her life. It all began with her memoir being published in the months before the swine flu epidemic, and also with the co-authorship of her book with him.
The celebration of Heumann took off soon after the release of a documentary. Filmmakers James LeBreck and Nicole Newnham discovered a film that was forgotten and used it to explore issues of identity for children with disabilities. The young people using wheelchairs and with various disabilities long to be included in a world that rejected them, but also find commonality and pride at a place that’s exclusively for them. Heumann, who had attended Camp Jened from the time she was 8 and was a counselor at the time of the original film footage, quickly emerges as the documentary’s star — a smart and self-confident organizer.
The Dialogue of the Disability Civil Rights Movement on the White House Laws: Judy Heumann and the 1978 New York City Voting Segregation Act
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.
Judy was allowed to go into a school building after her mother fought to end the isolating and erratic hours of home instruction.
Heumann graduated from college after studying to become a teacher. She was told that being a speech therapist was open to a young woman in a wheelchair.
But again, she was 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.
Heumann and a small group of demonstrators shut down rush hour traffic on Madison Avenue outside of Nixon’s reelection campaign headquarters in 1972. They wanted to call attention to Nixon’s veto of the Rehabilitation Act of 1972, which expanded programs to help people with disabilities.
The Carter administration had to change their policy on the basis of Section 504 of the Rehabilitation Act, which stated that no government agency, nor private business, could discriminate against someone on the basis of their disability.
The disabled people took over a federal building in San Francisco when the new administration of Jimmy Carter seemed unwilling to act. The rising disability civil rights movement was one of the first actions to gain national press attention.
Heumann emerged as a leader. Heumann didn’t let him off easy because the federal official tried to calm the protesters at the hearing. “We will no longer allow the government to oppress disabled individuals. The law needs to be enforced. We will accept no more discussion of segregation,” she said in a voice that quivered with emotion and indignation. “I would like you to stop shaking your head in agreement when I don’t think you understand what we’re 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.
Heumann was excited to be on the White House lawn when the ADA was signed into law. She was a critic of the legislation she thought didn’t do enough to help her and others like her.
Heumann was named assistant secretary of education in 1993 by Bill Clinton, who was then president, after being declared too dangerous to be a student or teacher.
Later, in the Obama administration, she worked as a special assistant to Secretary of State Hillary Clinton, in charge of spreading ideas about civil rights across the world.
Source: https://www.npr.org/2023/03/04/1161169017/disability-activist-judy-heumann-dead-75
Anisa Heumann: A Legendary Citizen, Mentored and Recognized by Women and Men in the Age of Progress
Heumann appreciated the growing recognition of her work and the way demand for her time had grown starting in 2020. She was able to mentor young activists around the world as a result of that time. She kept up with a growing demand to listen to her speak by starting and traveling or, in the case of the Pandemic, appearing on ZOOM.
She said that seeing her work for the civil rights for people with disabilities spread into the mainstream was like boiling water.
