Disabled People Are Not Simply Dispensable During a Pandemic

Illustration of coronavirus as it appears through microscope.

The following post is part of our series on perspectives from disabled and chronically ill people regarding COVID-19. This post is not intended as medical advice.

It’s hard to wash your hands to prevent the spread of coronavirus when you’re allergic to most bathroom hand soaps.

I have Mast Cell Activation Syndrome (MCAS), a condition where my body has allergic-type reactions to things I’m not actually allergic to. In addition to the fragrances in soaps, I also react to chlorinated water (i.e., most tap water). I carry safe soap and wipes in my purse, because otherwise I have to choose between a flare and contagion. Sometimes I’ve chosen to just wash my hands in allergens and suffer through the pain and swelling. 

Soap and fragrance sensitivities are more common than you might think. Danielle, a chronically ill parent, is allergic to the foaming agent in most soaps. It gives her “a blistering rash,” and to recover she has to take steroids. The catch is that steroids make her more vulnerable to infection.

Rachael Rose is a sexuality coach/educator and disability advocate who has written a guide to fragrance allergies and chemical sensitivities. “I think businesses should always put fragrance-free soaps in their restrooms so that no one needs to choose between washing their hands and having an allergic reaction to the fragrances,” Rose says. “I encourage anyone who’s comfortable doing it to politely suggest this to the businesses they visit.”

Beyond allergies and chemical sensitivities, COVID-19 affects the larger disability community. Alice Wong is the host of the Disability Visibility podcast; in regards to coronavirus, Wong says, “I use a ventilator and have very little reserve when I catch a cold or flu. When I get sick, it can last weeks and take even longer to recover due to weight loss. I cannot imagine what would happen to me if I got the coronavirus.”

Wong admits that she’s “trying not to feel guilty” for buying supplies like masks, gloves and soap when she isn’t immunocompromised, even though the coronavirus could seriously affect her. “Right now I am trying not to overthink things and focus on keeping myself safe (washing hands, reducing my trips out of the house) and my home care providers safe.”

News coverage has repeatedly stressed that people shouldn’t panic about coronavirus, because the flu is more risky unless you are immunocompromised or have a pre-existing condition or are over 65. On Twitter, @wandarigby, who is immunocompromised due to a chronic illness, mused:, “Are chronically ill ppl a non factor in the world??? ‘Remain calm’ bc only them are at most risk??? Are we more dispensable bc we’re ill?? Are we not ppl too!”

Charis Hill, a professional disabled writer, speaker and model, echoed these concerns in a recent piece they wrote: “Plans and public messaging are drafted with only healthy people in mind as the audience, as if no one listening will be ‘those in poor health’ — and if they are, well, someone else will handle that, and it’s OK if they die.”

Disabled people are also expressing frustration that accommodations we’ve been told were impossible are now becoming the norm. Karrie Higgins, a disabled activist and writer, tweeted their frustration about the situation: “Are you seeing a pattern here? When disabled people NEED an accommodation, we are denied & gaslit. When abled people are affected, suddenly “impossible” things like a livestream are doable. Accessibility benefits everyone, but you only want it to benefit abled people!”

While I am just as frustrated at the apparent double standard around accommodations, I find my predominant emotion is fear, as well as sadness at lives lost to COVID-19.  Others before me have compared COVID-19 to the AIDS crisis in the 1980s. The U.S. government’s lack of a timely response made both outbreaks worse. But what I cannot help thinking about is the gay men who by some twist of fate survived the AIDS crisis, yet had to bury so many friends and lovers. I think of films like Tongues Untied, which was made by Black gay men as a record because they knew that many in their community were dying from AIDS. I think of myself, growing up as a young queer person with a missing generation of elders.

We know that COVID-19 is more serious for those with underlying health conditions and particularly those who are immunocompromised. What does this outbreak mean for the Disability community? How many of my loved ones will be affected? How many loved ones will I lose?

In a recent article about the financial impact of COVID-19, The Telegraph went so far as to say, “From an entirely disinterested economic perspective, the COVID-19 might even prove mildly beneficial in the long term by disproportionately culling elderly dependents.” It didn’t take long for this outbreak to bring out eugenicist arguments. The use of the word “culling” here is particularly disturbing. As a disabled person who might be disproportionately culled, it is easy to despair at this situation.

Yet I also think of the heroic organizing done by the LGBTQIA+ community in the face of the AIDS crisis. From founding community health services like Gay Men’s Health Crisis to protesting for more research funding, the LGBTQIA+ community supported each other. It is my hope that in the face of this potential pandemic, the disability community supports each other as well.

Dawn M. Gibson, founder of #BlerdChat and #SpoonieChat, puts it best: “We all have a responsibility to contribute to public health through mutual respect and helpful habits….do your part to protect public health.”

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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Florida’s New “School Safety” Law Discriminates Against Students With Mental Illnesses

a gavel resting in front of a scale.

Note: In an effort not to conflate the specific legal meanings of “mental illness” with the intentionally broad umbrella term “neurodivergent,” the following article predominantly uses the terms “mental health” and “mental illness” rather than “neurodivergent.” However, in certain cases activists use “neurodivergent” to refer to themselves or groups affected; in this case their use of neurodivergent is included.

In the wake of the Parkland school shootings, Florida recently passed a law “relating to student discipline and school safety” which will impact students with mental illnesses, such as mood disorders and psychoses.

Statute 1006.07(1)(b) states that when registering for public school, the student must disclose “referrals to mental health services the student has had.” The law is vague, and it is not clear if people will try to apply it to students with a broader array of diagnoses such as learning disorders and personality disorders.

Additionally, the law also states under subsection 1006.07(7)(a) that a “threat assessment team” which includes law enforcement may be called when a student is deemed a threat to themself or others.

Mental health advocates have raised concerns about whether this requirement will have the desired effect of making schools safer, or if it will simply stigmatize neurodivergent students.

Noor P., a community organizer, raised the issue of how this legislation will particularly impact students of color. “I would like people to know it is unethical and it WILL make people hesitant to treat their kids. ESPECIALLY people of color,” Noor said. “Have you seen the rates of behavioral disorders slapped on black kids? Have you seen how schools treat them? They’re fundamentally treated as burdens instead of offered accommodations…It is unacceptable.”

Neurodiversity activist and University of Iowa student Hailey Teusink said of the law, “Regardless of your intent, if you are introducing such a bill just after the Parkland tragedy, you are implicitly (end even subconsciously) drilling into people’s minds that neuordivergencies cause violence, despite evidence to the contrary.”

Teusink is correct, according to a 2015 review of evidence on the link between gun violence and mental illness published in the American Journal of Public Health. “At the aggregate level, the vast majority of people diagnosed with psychiatric disorders do not commit violent acts—only about 4% of violence in the United States can be attributed to people diagnosed with mental illness.”

Additionally, the research above found that rates of gun violence among mentally ill people are less than among those who do not have a mental illness.

Richard J. McNally is the Director of Clinical Training for the Harvard Department of Psychology, and also an advisor to the Diagnostic and Statistical Manual of Mental Disorders. In an article published about his book, What Is Mental Illness?, McNally states that, “Individuals suffering from severe mental illness are far more likely to be victims of violence than perpetrators of violence.”

Research also indicates that victims of police shootings and brutality are likely to be disabled, and often have a mental illness. A 2016 article in The Guardian estimates “a third to half of all people killed by police in the US have a disability. In addition, according to [the Ruderman Foundation], almost all well-known and widely reported cases of police violence involve a disabled person.” (It is important to note, even when citing this research, that it has been recently critiqued in a noteworthy document entitled Accountable Reporting on Disability, Race, & Police Violence: A Community Response to the “Ruderman White Paper on the Media Coverage of Use of Force and Disability.”)

Furthermore, The Guardian notes that certain forms of mental illness may affect communication. Atypical communication in an encounter with police may be deadly if the officer feels “threatened” by stimming, psychosis, or use of ASL/Signed Languages.

Placing police officers in schools as part of a “threat assessment team” may not be the guarantor of student safety legislators intended, particularly if those students have a mental health problem that affects communication.

Caleb, a 17-year-old neurodivergent high school student, said of the Florida law, “This feels invasive…My mom told the teachers [about my diagnoses] so they could know how I learned.” Indeed, many schools are already aware of student’s mental illness if the student receives accommodations via an Individualized Education Program (IEP). Teusink also stated that as regards disclosing her mental health status to schools, “I had no choice in the matter — they HAD to know for my IEP.”

Azza Altiraifi, a disability and racial justice advocate in the DC metro area, has already experienced institutional discrimination as a result of seeking treatment. Speaking of her experience, Altiraifi says,“It almost derailed my undergraduate career entirely….The University treated my neurodivergences as a liability and threw me out of the school for all intents and purposes to evade any legal responsibility for what they feared I might do to myself and others.”

Asked about the effects of Florida’s new law, Altiraifi replied, “This will not only stigmatize students, but requiring such disclosures will make these students even more acutely vulnerable to both interpersonal and institutional violence and abuse. It does nothing to curb gun violence, but will cause immense harm to the most marginalized students.”

Parkland was awful. It joins the growing litany of mass shootings in the United States that serve as a condemnation of our collective failure to reduce gun violence.

Yet when we rush to take some action for the sake of doing something, is it actually better than nothing? Or are we hurting an already vulnerable population of mentally ill students to quell our collective conscience?

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.