The burden and consequences of self-advocacy for disabled BIPOC
The burden and consequences of self-advocacy for disabled BIPOC
The Americans with Disabilities Act (ADA) was passed the year I was born and it has had a profound impact on my life. It widened the expanse of my opportunities immensely, providing accommodations that have enabled me to access higher education and employment. I’ve had disabilities since I was a child, and I benefited from the ADA, and from its predecessor, Section 504 of the Rehabilitation Act, many years before I had the language and political sense of disability to identify as disabled. As someone with chronic illnesses and invisible disabilities, and as an Indian American woman from a culture in which disability as a concept is taboo – a word hushed into silence if spoken aloud, I was years into adulthood before I realized disability was an identity I had the right to claim. It was even longer before I learned about the decades long history of Disability Rights activists, including disabled BIPOC (Black, Indigenous, People of Color), in the US. Their work paved the way for me and allowed me to take pride in a community and identity I had been taught was shameful. Without owning this identity, I could not see how ableist oppression was systemic and that it needed to be pushed back. Every denial of accommodations, every dismissal of me and my needs, every time an instructor or employer thought I was too “difficult,” “unreasonable,” or “too burdensome,” to accommodate were not instances of individual bad actors, but part of a wider pattern of ableist oppression. Until I conceived of disability as political, I could not see how systemic ableism and racism intertwined to keep disabled BIPOC in particular from accessing many of the opportunities the ADA had been designed to open to disabled people.
In the context of higher education, the ADA is supposed to enable students with disabilities to access their programs and classes by requiring instructors to provide “reasonable accommodations,” such as course materials in alternative formats, flexible attendance requirements and deadlines, and exam accommodations. However, it is left to individual students to request and self-advocate for the accommodations we need, and it is left up to the discretion of the instructor to provide them. It is up to the instructor to decide if the accommodation is “reasonable” and does not, in their view, fundamentally alter their course. There is often talk about how disability accommodations, and by extension disabled people ourselves, are a burden on instructors and schools. What’s missing from the conversation is the burden that requiring self-advocacy places on us as disabled people just to secure our place in the classroom. The ADA’s ad hoc approach, medical documentation requirements, and language of “reasonable accommodations” make it especially difficult for disabled BIPOC to obtain the accommodations we need to access higher education.
In order to obtain classroom accommodations, students with disabilities need to be registered and have documentation on file from healthcare providers. The medical documentation we need is harder to obtain as BIPOC, as we are underdiagnosed and experience greater barriers to healthcare due to medical racism and bias. There is extensive evidence that BIPOC face disparities in diagnosis, treatment, insurance coverage, and quality of medical care, and these disparities remain even after controlling for socioeconomic factors. Even AI algorithms that apportion healthcare resources amplify racial disparities that already exist.
These disparities are compounded for mental illnesses and for stigmatized chronic illnesses, which are perceived as affecting mostly white women. ME/CFS is a prime example of a disease whose false perception as a trivial white woman’s disease, promoted by public health authorities like the CDC as well as the media, has deepened its stigma and left our communities vastly underdiagnosed and underserved. BIPOC are also underdiagnosed and undertreated for chronic pain disorders, such as fibromyalgia and migraine. Moreover, there are also often cultural barriers that delay or prevent us from seeking care. In the South Asian community specifically, there is profound silence and stigma around mental illness, and discouragement from family and community members from seeking professional help. I have friends who had diagnosis and treatment delayed for years because their families discouraged them from getting help for mental health problems. We’re told to work out our issues within the family rather than rely on “Westernized” therapy or medication. Despite having higher rates of depressive symptoms and suicide than the general US population, South Asian Americans have the lowest rate of utilization of mental health services. Needing to slow down or take a break due to physical or mental health issues is seen as a sign of intolerable weakness in a community that defines itself by its academic and professional successes. Striving to conform to the model minority myth by outwardly projecting emotional self-sufficiency and a relentless work ethic may aid our assimilation, but it marginalizes those in our community who cannot keep up and who need help the most.
Even with medical documentation on file, disabled BIPOC face added suspicion, resistance, and stigma from instructors, particularly for invisible disabilities. We are also stereotyped in racially coded ways as unreasonable, aggressive, and “angry” when we self-advocate. We are especially heavily policed in graduate and professional programs, and this is apparent in our representation – while 26 percent of adults in the US have a disability, only 12 percent of post-baccalaureate students are students with disabilities. This is even lower among some ethnicities – only 6 percent of post-baccalaureate Asian American students have a disability.
I joined a Master of Public Health program in 2017 because I wanted to change the way our fractured healthcare system was failing so many people with chronic illnesses, bring the social model of disability to the forefront of public health, and examine disability as a social determinant of health that intersects with other marginalizations. I wanted to use more patient-centered, inclusive models of care and technology to combat ableism, racism, and gender bias in healthcare. Two years later, I was driven out of this program by the same culture of ableism, racism, and gender bias that our public health and healthcare systems are entrenched in. I experienced racial and disability-based discrimination and harassment from an abled white woman professor who taught two of my required classes. She continually resisted and denied me simple and routine accommodations, such as allowing exam accommodations, recording lectures, and providing readily available notes before class. Moreover, she targeted me for extensive harassment that went on for months, even after my courses with her were over, denigrating my abilities and competency. She would yell at me and make things personal whenever I asked for an accommodation, rolling her eyes when I tried to explain the impact of my disabilities and my access needs. She also tried to intimidate me saying, “I don’t want you to complain about me on the course evaluations, saying I was being mean.” When I wrote about my experiences in the evaluation, she retaliated against me by emailing the university’s disability resource center staff I was no longer working with to complain about my performance and conduct. She inappropriately shared the details of another student’s medical emergency, comparing my disability to her situation, and suggesting mine wasn’t as bad, but she still managed to do better than me. The harassment by email continued after the course was over until I blocked her on my email client.
The instructor repeatedly called me “angry” in front of others and painted me as an aggressor for insisting on the accommodations I needed. The “angry black woman” stereotype has roots in a long history of anti-black racism in American media dating back to minstrel shows, and Black women continue to bear the brunt of it. Misogynoir, the hatred of Black women, a term coined by Moya Bailey and Trudy, is used to silence and suppress Black women who challenge social injustice or demand equality by dismissing their anger as irrational and illegitimate. However other women of color, such as South Asian women, are often also subject to being stereotyped as irrationally “angry” when we don’t remain submissive in the face of oppression as expected by the model minority myth, another harmful stereotype that serves white supremacy. The Director of Diversity at my school, a Black woman, recognized the way this stereotype was being weaponized against me, and she pointed out that even if I was “angry,” what did that have to do with denying me the accommodations I needed? Why was calling me “angry” being used as a way to dismiss me and delegitimize my concerns? If the person requesting the accommodations can be painted as unreasonable merely by virtue of their perceived attitude, so can the accommodations they request. And disabled BIPOC are overwhelmingly more likely to be perceived in this way, the impact of multiple unjust systems working against us. As my experiences taught me, our pain and rights are considered less important than centering the feelings and intentions of our white oppressors.
I was driven out of my classes by increased toxicity and escalation by the instructor. She said she “knew all about diversity as a 60-year-old woman” as she was harassing and driving me, a young disabled woman of color, out of her class. She invoked #MeToo repeatedly in front of other students and staff to gaslight me and suggest her treatment of me was not that bad. With the remarkable irony and lack of self-awareness of white feminism, she told me that I had it so much easier than older (white abled) women like her before the #MeToo movement. This kind of harassment and discrimination of a white woman professor against a disabled woman of color student is exactly the type that derails our education and careers in a similar fashion to the way that workplace gender-based sexual harassment derails the careers of (white) women. The only difference is the discrimination and harassment in my case was on the basis of disability, gender, and race rather than solely on the basis of gender – but the impact was no less destructive.
It was a deeply demoralizing time for me that severely impacted my physical, emotional, and mental health. The daily stress from my professor’s microaggressions compounded to the point that it was flaring up my chronic illnesses, which resulted in more absences and increased harassment in turn from my professor. I developed a trauma response so that every time she approached me in class, or I opened an email from her, my heart would race and my anxiety would spike in anticipation of what new way she would find to attack me. She denigrated my abilities and questioned whether I had what it took to be a good public health researcher in front of others because I needed accommodations, which heightened my imposter syndrome, anxiety, and self-doubt, despite the fact that I had excelled in my other courses and had entered my school with a competitive public health scholarship. If I had received support from my advisor and other faculty, I might have stayed, but they dismissed me and closed ranks around her, telling me my complaints were baseless, her decisions were correct, and there were plenty of disabled students before me who had done just fine in their program. The only support I had was from friends from my diversity-focused student group – other disabled/marginalized students of color, and it was only by leaning on them that I was able to emotionally stick it out through the rest of the semester. However, the hostile and persistently discriminatory environment eventually forced me to drop out of the public health program/school and transfer to another program at my university (in health informatics) that fortunately had a more inclusive design and culture.
This was far from an isolated incident at my school. I experienced disability discrimination and was denied accommodations on a regular basis in my program, but this was just the worst incident, as it was followed by sustained harassment. From talking to other students, I learned that my professor had a pattern of harassing and attacking marginalized students. As part of a diversity-focused student group, marginalized/disabled students of color including myself organized a grant-funded initiative and collected more than a hundred stories of harassment, discrimination, and microaggressions at my university’s public health school, most of them concerning racism or ableism. When some of these stories and incidents were presented to my school’s administration, 90 percent of the pushback, denial, and microaggressions were against the theme and stories about ableism, even though it was only one of four themes. In particular, one departmental head said, “Professors don’t intentionally discriminate, we just don’t know how to accommodate students,” when the stories read aloud specifically described students voicing their experience of disability discrimination from instructors. Others said students should just register with the university’s disability resource center or other basic suggestions rather than addressing the institutional and systemic problem and the solutions we offered such as universal design and mandatory faculty training on disability. My disability resource center advisor said that universal design is not a requirement of the ADA and without it being compelled by law, the administration would be unlikely to implement it.
Features of universal designed course materials can range from materials that are pre-emptively provided in multiple alternative formats (including online), flexibility in attendance requirements and assignment deadlines, and exam accommodations, that are all built into the course design. My current program in health informatics provides nearly all its in-person classes in hybrid and online sections by livestreaming, recording, and posting in-person lectures online (which also provides a way for people who miss classroom attendance due to illness to catch up via the recordings). The shift by universities across the country of all classes to online formats in the wake of COVID-19 has proven that this was always possible. Universities just refused to make that part of their default practice, forcing many disabled people to drop out, while rushing to provide abled people this access due to the pandemic.
Additionally, legally requiring mandatory faculty training on disability, ableism, and accommodation of students with disabilities would be of great benefit. There is a tremendous amount of ignorance, misunderstanding, and stigma around disability, and ableism is deeply embedded in the cultural milieu of academia. When the graduate and professional group for students with disabilities at my university advocated for accommodations, faculty openly voiced their belief that students would “fake” disabilities to gain unfair advantages over other students. The idea of “disability fakers” is a pervasive and deeply damaging stereotype of our community. Suspicion and fear of the “the disability con”, a term coined by Ellen Samuels, is used as grounds to harass disabled people who use disabled parking spots and police disabled people’s access to accommodations, Social Security benefits, and other social support services. People with invisible disabilities are especially prone to being viewed with suspicion because we don’t “look disabled”. Mandatory faculty training on disability could push back against ableist stereotypes and stigma like this and educate faculty on the diversity of presentations and types of disabilities, the barriers so many of us face to getting even our basic accommodations and needs met, and how to proactively make their courses accessible and accommodate us.
The ADA was a groundbreaking piece of legislation that enabled access to public accommodations and opened up many opportunities, including those in higher education, to a wide swath of people with disabilities. However, it falls short in fully guaranteeing access and preventing discrimination for many disabled people, especially disabled people of color. It simply does not go far enough. Implementing universal design and mandatory faculty training in education would help prevent the burden and repercussions of self-advocating from disproportionately falling on disabled students of color. Centering the needs and experiences of disabled BIPOC is a matter not just of equity but of justice. The Disability Rights Movement that gave rise to the ADA was influenced by the tactics of the Civil Rights Movement, and disabled BIPOC were involved in every step of the way. Only when the most marginalized among our community are free of oppression, are all of us free.
Aparna R. is a writer, disability activist, public health researcher, and grad student based in Minneapolis, Minnesota. Her research involves analyzing and visualizing data to examine social determinants of health, including race and disability, that drive health disparities. When she’s not writing code, she’s writing fiction featuring disabled people of color who achieve their dreams and subvert ableist expectations. She’s written numerous short stories and novellas in various genres and is working on a YA historical fantasy novel. You can find her on Twitter @aparna_r_writer
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