By Tracy Waller, Esq., MPH
Life-limiting inequities continue to persist in healthcare, community living and justice for people with disabilities.
The Center for Dignity in Healthcare for People with Disabilities (Center for Dignity) focused on the important work of addressing the inequities that persist for people with disabilities in healthcare and their perpetuation due to systemic ableism.
Every person has their own unique and lived experiences. As poet Audre Lorde said, “There is no such thing as a single-issue struggle because we do not live single-issue lives.”
Recently, the Center for Dignity received funding to transform itself into the National Center for Disability, Equity, and Intersectionality, in celebration of the incredible diversity of lived experiences within the disability community, and to center the critical importance of these experiences in resistance to not only ableism, but all forms of discrimination and oppression.
Originally coined by civil rights advocate and scholar Kimberlé Crenshaw in 1989, the term “intersectionality” identifies the ways that social categorizations assigned to individuals or groups, including race, ethnicity, sexual orientation, gender identity, disability, class and other identities, “intersect” to create overlapping systems of privilege and oppression.
For example, someone who identifies as a nonbinary person with a disability will not have the same lived experience as someone who identifies as a cisgender man or woman with a disability. The word “disability” is not all-encompassing—every person with a disability will have a different lived experience.
Disability Rights Movement and Disability Justice
Building on the Disability Rights Movement with an intersectional lens, Disability Justice is a framework launched by a group of disabled queer people and activists of color who connected with each other through Sins Invalid, a disability justice-based performance project. The Disability Justice framework distinguishes the complexities of multiple marginalized disabled people and aims to be holistic by recognizing these intricacies. It emphasizes on its website that “all bodies are unique and essential, that all bodies have strengths and needs that must be met. We are powerful not despite the complexities of our bodies, but because of them. … [We] move together … [with] no body/mind … left behind.”
In 2009, while I was working on my Masters of Public Health degree, disability was often left out of course discussions, even though students were encouraged to look at health through an intersectional lens. Yet one in four, or 61 million, adults in the United States are currently living with a disability—a statistic that has not much changed from 2009. In 2021 and 2022, long COVID-19 likely increased the number of adults living with disabilities.
Disability is a public health issue because disabled people do not have the same opportunities to be as healthy as nondisabled people. The most basic definition of public health is “the health of the population as a whole,” according to the Oxford Languages dictionary. The overarching goal of public health is disease prevention and control through health equity, which calls for removing obstacles so everyone may have the same opportunities to be healthy. Therefore, addressing public health through disability justice and intersectionality is essential to the health of the nation. Public health considers more than just the medical and physical indicators of health. It also takes into account the social determinants of health—nonmedical factors that influence health outcomes, well-being and quality of life. A few examples are racism, discrimination, violence, job opportunities and income. These determinants contribute to health disparities and inequities.
Historically, people with disabilities have been excluded from not only their own healthcare decisions, but the more expansive public health world as well. As the organization Disability in Public Health states on its website, “Many community health promotion programs do not reach or include people with disabilities in their program design.”
By using a disability framework with an intersectional lens, we can take steps toward justice and reducing inequities in healthcare and community living for people with disabilities. Per Sins Invalid’s tenth principle of Disability Justice, “only moving together can we accomplish the revolution we require.” People with disabilities must be included in, and help lead the conversation in their respective settings.
The Disability Rights Movement established civil rights for people with disabilities with the passage of the Rehabilitation Act of 1973 (Section 504), the Individuals with Disabilities Education Act (IDEA) and the Americans with Disabilities Act (ADA). While these acts legalized repercussions for the mistreatment of people with disabilities, the movement has historically centered around white experiences, with a primary focus on physical disabilities, marginalizing other types of disabilities and discounting intersectionality.
Disability Justice activists launched their framework in 2005. The Disability Rights Movement fell short when activists were “incubated in progressive and radical movements that did not systematically address ableism in their politics,” writes Patty Berne, one of the activists involved in the formation of Disability Justice.
The Disability Justice framework highlights the importance of individuals working in their respective settings, offering opportunities for people with disabilities, and creating new norms together. It emphasizes the importance of leadership by disabled people of color and queer and gender-nonconforming disabled people.
 In a November 2021 interview with NPR’s Mary Louise Kelly, professor of medicine at Harvard University, Lisa Iezzoni discusses some of her work focused on healthcare barriers faced by people with disabilities including physicians attitudes towards treating patients with disabilities, physicians’ lack of knowledge about accommodations, and lack of accessible medical equipment such as weight scales and examination tables.