This blog post is part of the Diabetes Past & Present series examining how diabetes history shapes current events in the community. You can check out part one of this series focusing on insulin development here, and part two of the series focusing on diabetes camps here. This blog will address the creation of the American Disability Rights Movement & Diabetes Accommodations. Stay tuned for a Canadian equivalent next week! Learn more about Eleanor Medley, the author of this series, here.
Chronic health conditions such as diabetes are included in the legal definition of disability under the Americans with Disabilities Act (ADA), making it illegal to discriminate against someone on the basis of their diabetes. People with diabetes are also entitled to reasonable diabetes accommodations at school and work, allowing them to perform to their full potential. So, how did these legal protections come about? In the third instalment of this series, let’s look at the historic and ongoing disability rights movement and understand why it is important for people living with diabetes.
Ableism describes the system that both intentionally and unintentionally oppresses people with disabilities while privileging people who do not currently have disabilities. Ableism centers able-bodied people as the norm and views differences as defects that need to be fixed. [1] The system is composed of institutional structures, cultural norms, and individual beliefs. It is present in transportation systems, schools, communication formats, medical care, and government policies.
The disability rights movement sought to combat ableism and grant those with disabilities equal rights under the law. Disability rights started to garner significant public attention after World Wars I and II when veterans with disabilities pressured the U.S. government to provide them with rehabilitation resources. [2] Polio outbreaks in the U.S. in the late 1940s further contributed to increasing disability awareness. [3] At this time, most public spaces were not accessible to people with disabilities.
Encouraged by actions of the civil rights movement, disability activists mobilized during the 1960s. Landmark civil rights victories such as Brown v. Board of Education laid the groundwork for the passage of the 1975 Education for All Handicapped Children Act, for example, which guaranteed children with disabilities access to public education. [4]
Similarly, the Civil Rights Act of 1964 provided a model for Section 504 of the 1973 Rehabilitation Act which prohibits discrimination against individuals with disabilities in federally funded programs. [5] Section 504 was important because it shifted the burden away from individuals with disabilities and towards environments to be made more inclusive. [6]
The government at the time, however, was not ready to make all the federally funded buildings around the country accessible. Four years after the law passed, it had still not been enacted. [7] Not to mention it had already been veto-ed two times prior to being passed. This delay prompted a major act of civil disobedience and community activism: the 504 sit-in.
In Spring of 1977, The American Coalition of Citizens with Disabilities warned that if the secretary of Health, Education, and Welfare did not take action to enact Section 504 by April 4, there would be national protests. Sticking to their word, on April 5, 1977, protestors started occupying federal offices around the country from New York City to Washington D.C., Atlanta, Boston, Chicago, Denver, and Los Angeles. [8]
In San Francisco, over 100 people with disabilities occupied the 50 United Nations Plaza Federal Office building. They were led by Judy Heumann, a disability rights activist, and former Camp Jened camper (see part II of this series!). [9] Heumann was shocked to discover that the regional director was completely unaware of the protestors’ demands and decided they would stay in the building to show they were a group to be taken seriously. [10]
The San Francisco group ended up occupying the building for 28 days (it was the longest nonviolent occupation of a federal building in American history!). [11] The government tried to deter them by cutting the building’s phone lines and water, but the protestors were backed by allies such as the Black Panther Party who provided them with hot meals. Judy Heumann and some of the protestors ended up flying to Washington to apply more pressure on the government and on April 28, 1977, Section 504 was finally passed. [12]
Does the number 504 ring a bell? It is Section 504 of the Rehabilitation Act that covers ‘504 plans’ giving children with disabilities the support they need at school. [13] Many people with diabetes use 504 plans to access diaebtes accommodations at school, allowing them to take breaks when experiencing a low BG, or eat during class for example. Access to these plans didn’t just pop up out of thin air! We have the tireless demonstrators of the 504 sit-in to thank.
Another major milestone in the fight for disability rights was the passage of the Americans with Disabilities Act (ADA) in 1990. The ADA is the piece of civil rights legislation that prohibits discrimination against Americans living with disabilities. For months before it was signed into law by George H.W. Bush, however, Congress stalled it. [14] Just as with the delay in the enactment of Section 504 of the Rehabilitation Act, disability activists took action.
On March 13, 1990, over 1,000 people marched to the U.S. Capitol to demand Congress pass the ADA. At the Capitol, demonstrators left their wheelchairs, crutches, and other mobility aids to crawl up the steps. “Capitol Crawl”, as it is known now, was a powerful way to highlight the urgent need to address inaccessibility in the U.S.
After the passage of the ADA, a few Supreme Court cases influenced how it was put into practice. For example, Olmstead v. LC asserted that under the ADA, people with mental disabilities can live within their communities rather than in institutions. [16] Two other cases, Sutton v. United Air Lines, Inc. and Toyota Motor Manufacturing, Kentucky, Inc. v. Williams, attempted to narrow the definition of disability. [17] In response, the ADA Amendments Act of 2008 was passed, overturning these two decisions and broadening the definition of disability. [18] It is through these amendments that diabetes became definitively covered by the ADA. [19]
The ADA Amendments Act provided direction as to what “major life activities” can be affected by a disability, specifically including endocrine function. It also clarified that impairments should be considered without regard to mitigating measures, such as insulin therapy. This makes diabetes accommodations more flexible, allowing preparation for not ideal situations.
When I was six, my parents signed me up for one of the local summer camps in my town. After a few days of attending camp, I was asked not to come back the next day…or the day after that…or ever. The staff felt uncomfortable helping me manage my diabetes and instead of learning with the support of my parents, they asked me to leave. Though the Board of Health deemed it was safe for me to return, the camp refused. My parents filed legal action and the Department of Justice found that my exclusion violated the ADA. The camp agreed to allow all children with diabetes and other disabilities to participate in their activities.
It is through the ADA that I was able to be protected from discrimination on the basis of my diabetes.
Despite their advancements, the ADA and Section 504 of the Rehabilitation Act left a gap in the protection of people with disabilities from discrimination in private health insurance. [20] The enactment of the Affordable Care Act (ACA) in March 2010 marked the first time the federal government made an effort to regulate the private health insurance industry. The ACA asserted health insurers could not deny coverage or charge higher rates for people with pre-existing conditions such as diabetes. As originally enacted, Section 1557 of the ACA broadly prohibited health programs receiving federal assistance from discriminating against people on the basis of not only disability, but also race, color, national origin, language proficiency, sex, gender identity, and age. [21]
In June 2020, a new final rule threatening the reinforcement of the nondiscrimination provisions in the ACA was enacted. [22] The rule grants exemptions from the nondiscrimination provisions for private health insurance companies, eliminates gender identity protections, reduces protections for those with limited English proficiency, and eliminates notice requirements informing people of their rights under Section 1557. [23]
Furthermore, In 2017, Congress voted to reduce the penalty for individuals who choose not to maintain health insurance coverage to $0. In February 2018, it was argued that because the penalty for not having insurance was eliminated, the ACA, which provides health insurance to over 20 million Americans, is unconstitutional. This case, known as California v. Texas, was heard by the Supreme Court on November 10, 2020 and a decision has yet to be announced. [24]
CIM’s #ThisIsTypeOne initiative
As you can see, while huge strides have been made in the fight for equal rights for people with disabilities, there is still a long way to go. Ableism continues to manifest in a variety of ways and unfortunately, there continues to be a lack of diverse representation of people with disabilities. Representation of people with diabetes, for example, has historically been predominantly white.
Disability justice seeks to center and uplift all people with disabilities, recognizing the importance of intersecting identities. [25] The rise of social media has been invaluable for disability justice advocacy, with initiatives such as Diabetes Awareness Month challenges, #CripTheVote, and #DisabledAndCute providing space for diabetes and disability visibility online.
Even still, the immense diversity within the disabled community is too often overlooked. Disabilities come in a multitude of forms—visible, invisible, physical, mental, chronic, temporary, congenital, developed, etc. And every person living with a disability experiences it uniquely.
Diabetes is often considered an invisible illness because it is hard to tell someone has it just by looking at them. In this way, someone with diabetes may have different experiences than someone with a more visible chronic illness or disability, for example. Disability can mean something different to everyone, and some people with diabetes do not self-identify as having a disability or only do so in certain contexts. It is still important that as members of the diabetes community, we understand the history of the disability rights movement and the ways in which it impacts us. It is also pertinent that we continue to fight for fair treatment and inclusion for all people with diabetes, and disabilities at large.
Timeline showing key events in the Disability Rights Movement. 1973: Rehabilitation Act, 1973 Rehabilitation Act with section 504 passed. 1975: Education Act, Education for All Handicapped Children Act passed. 1977: 504 sit-in, 504 sit-in leads to enactment of 1973 Rehabilitation Act. 1990: Americans with Disabilities Act, Capitol Crawl, ADA is passed. 2008: ADA Amendments Act, Amendments to the ADA passed. 2010: Affordable Care Act, ACA enacted.
References:
[1] Anna, et al. “What Is Ableism? Five Things About Ableism You Should Know.” FWD/Forward, 19 Nov. 1970, disabledfeminists.com/2010/11/19/what-is-ableism-five-things-about-ableism-you-should-know/.
[2] Anti-Defamation League, “A Brief History of the Disability Rights Movement”
[3] Carmel, Julia. “‘Nothing About Us Without Us’: 16 Moments in the Fight for Disability Rights.” New York Times, 22 July 2020. https://www.nytimes.com/2020/07/22/us/ada-disabilities-act-history.html
[4] Carmel, “‘Nothing About Us Without Us’: 16 Moments in the Fight for Disability Rights.”
[5] Carmel, “‘Nothing About Us Without Us’: 16 Moments in the Fight for Disability Rights.”, “Disability History: The Disability Rights Movement.” U.S. National Parks Service, U.S. Department of the Interior, 13 Dec. 2019, www.nps.gov/articles/disabilityhistoryrightsmovement.htm.
[6] Carmel, Julia. “Before the A.D.A., There Was a Section 504.” New York Times, 22 July 2020.
[7] Carmel, “Before the A.D.A., There Was a Section 504.”
[8] Carmel, “Before the A.D.A., There Was a Section 504.”
[9] Watch Crip Camp: a Disability Revolution. Directed by Nicole Newnham and James LeBrecht. Higher Ground Productions, 2020 to learn more about this.
[10] Carmel, “Before the A.D.A., There Was a Section 504.”
[11] Wong, Alice. Disability Visibility: First-Person Stories from the Twenty-First Century, Vintage Books, a Division of Penguin Random House LLC, 2020.
[12] Carmel, “Before the A.D.A., There Was a Section 504.”
[13] Protecting Students With Disabilities. 10 Jan. 2020, www2.ed.gov/about/offices/list/ocr/504faq.html.
[14] Carmel, “‘Nothing About Us Without Us’: 16 Moments in the Fight for Disability Rights.”
[15] Carmel, “‘Nothing About Us Without Us’: 16 Moments in the Fight for Disability Rights.”, Little, Becky. “When the ‘Capitol Crawl’ Dramatized the Need for Americans with Disabilities Act.” History.com, A&E Television Networks, 24 July 2020, www.history.com/news/americans-with-disabilities-act-1990-capitol-crawl.
[16] “Olmstead: Community Integration for Everyone.” ADA.gov, www.ada.gov/olmstead/olmstead_about.htm.
[17] “A Brief History of Civil Rights in the United States: ADA Amendments Act of 2008.” Georgetown Lab Library Guides, guides.ll.georgetown.edu/c.php?g=592919.
[18] The Americans with Disabilities Act Amendments Act of 2008, U.S. Equal Employment Opportunity Commission, www.eeoc.gov/statutes/americans-disabilities-act-amendments-act-2008.
[19] “Diabetes in the Workplace and the ADA.” Diabetes in the Workplace and the ADA , U.S. Equal Employment Opportunity Commission, 15 May 2013, www.eeoc.gov/laws/guidance/diabetes-workplace-and-ada.
[20] Douglas, Dania. “Trump Administration Rolls Back Important Health Care Protections for People with Disabilities and Chronic Health Conditions.” National Health Law Program, 6 Aug. 2020, healthlaw.org/trump-administration-rolls-back-important-health-care-protections-for-people-with-disabilities-and-chronic-health-conditions/.
[21] Douglas, “Trump Administration Rolls Back Important Health Care Protections for People with Disabilities and Chronic Health Conditions.”
[22] Douglas, “Trump Administration Rolls Back Important Health Care Protections for People with Disabilities and Chronic Health Conditions.”
[23] Douglas, “Trump Administration Rolls Back Important Health Care Protections for People with Disabilities and Chronic Health Conditions.”; MaryBeth, Muscumeci, et al. “The Trump Administration’s Final Rule on Section 1557 Non-Discrimination Regulations Under the ACA and Current Status.” Kaiser Family Fund, 23 Sept. 2020, www.kff.org/racial-equity-and-health-policy/issue-brief/the-trump-administrations-final-rule-on-section-1557-non-discrimination-regulations-under-the-aca-and-current-status/.
[24] Rovner, Julie. “The Future Of The Affordable Care Act In A Supreme Court Without Ginsburg.” NPR Morning Edition, NPR, 21 Sept. 2020.
[25] Patty. “10 Principles of Disability Justice.” Sins Invalid, Sins Invalid, 17 Sept. 2015, www.sinsinvalid.org/blog/10-principles-of-disability-justice.
