Ableism and why #MyDisabledLifeisWorthy
Ableism: the discrimination of and social prejudice against people with disabilities based on the belief that typical abilities are superior. E.g. Accessliving.org ‘Ableism 101.’
As year three of the global pandemic opened, our disabled community was met with public proclamations of ableism from the national stage to our neighbors. COVID-19 illness is still prevalent and deeply impacts people with disabilities. While we are fighting to not only survive but live and enjoy our lives with family and friends, ableism has continued its attempt to create a blockade of barriers to prevent us from doing so.
Ableism is ever prevalent. Since the start of this pandemic, we have continuously exclaimed that we are at the highest risk of severe illness, long-term health effects, and death, yet little has been done to help protect us; the one in three people in South Carolina who has a disability.
Ableism has grown stronger following the inappropriate comments of CDC Director, Rochell Walensky, who suggested it was “encouraging” that a majority of COVID-19 deaths were in those who were “unwell to begin with.” The statement was later confirmed to have been edited out of context, and the director met with disability-led organizations about the matter, however, it is hard to comprehend how such descriptions could not indicate ableist sentiment. Regardless, such statements coming from such high places encourage ableist segregation practices and imply that our lives are expendable collateral damage. Harm and mistrust already formed were further solidified in our community. People with disabilities continue to feel ignored and are exhausted by it.
Three days later, ableism was found in one of the nation’s highest offices yet again. Supreme Court Justice Sonia Sotomayor is a member of our disability community. Having Type 1 diabetes puts her at greater risk of COVID-19 illness and complications. She has continually worn a mask to the court and asked the same of her colleagues. This January, with the omicron variant ever-present, all justices opted to wear a mask, save for one: Justice Neil Gorsuch, Sotomayor’s bench-mate. Sotomayor has since been forced to opt to participate remotely as her seatmate’s chosen ideology over consideration for his disabled peer. Since the story was reported, statements of “warmth and friendship” have been reported between the justices. However, when a justice of the Supreme Court can’t make such a small sacrifice for the health of his immunocompromised colleague, does this showcase leadership, consideration for the citizenry they serve, or give us hope? Regardless of statements to “clarify” and smooth over reports, this kind of callous behavior underlines the standards of consideration ableists hold for those of us with disabilities.
People with disabilities continue to fill hospital beds and emergency rooms, where we are often met with ableism once again. A recent study published in the journal Health Affairs found that more than one-third of American doctors surveyed had little to no knowledge about their legal obligations under the Americans with Disabilities Act, and 71% did not know “who” determines reasonable accommodations. A law that has been in place for nearly 32 years, with one-quarter of the US population identifying as having a disability, and America’s doctors aren’t aware of their role in following this federal law. These statistics become a reality when we recall the story of Michael Hickson, a 46-year-old Black father of 5 and quadriplegic man who was denied basic human rights, including medical care, food, and water, which led to his starvation and death because his hospital ended his COVID-19 treatment for no reason beyond the biases against his disabilities. They didn’t think his life was worth saving. We recall the story of Nerissa Regnier, a 45-year-old mother of 3 with multiple sclerosis, who died from COVID-19 after being denied access to vaccination and life-saving medical treatment. Nerissa died because of her doctor and hospital’s lack of knowledge about their obligation to learn how to accommodate her disability and properly advise and treat her.
National moments and trends like these affects how our neighbors and community influencers engage with us [people with disabilities]. Statements like, “May as well give up because we’re all going to get it,” and even the CDC releasing information or inviting their own staff to events where they describe omicron as, “mild,” are dangerous messages to those of us with disabilities. Recently, mainstream media has taken to proclaim (months too soon) that we are soon to reach endemic status. The risk of deadly disease remains high for people with disabilities! Pretending that “the virus doesn’t affect me” because you do not identify as having a pre-existing condition not only alienates people with disabilities; it is not true. You know people with disabilities. One-third of the people living in South Carolina have a disability. Look around your dinner table. You may have a child, a parent, a sibling, a friend with a disability. You may have a disability yourself and be unaware.
One of the worst homes of ableism towards our disability community is social media, particularly the use of the laughing emoji in the context of COVID-19 content. Recently Able South Carolina co-hosted a barrier-free vaccine clinic. We were so thrilled at the opportunity to offer a clinic space to our community that met their needs and accommodations. We worked hard on it. We spent hours ensuring that all needs were met and all barriers to access were removed. We saw dozens upon dozens come through our doors to get their vaccine in a place where they knew they’d be safe, cared for, listened to, and understood. We posted about it on social media. We saw the laughing emojis and negative comments. What does that tell us? You disrespect our community. You disrespect our needs. You have no empathy for our risk. You have no empathy for those new to our disability community because of COVID-19. You do not sympathize with the people we lost. While it’s clear social media blowback has no impact on Able SC’s intention and continued work, it needs to be made clear that when you participate in a negative way, someone who belongs to our community is seeing your comment and your laugh. Someone is being hurt by your disrespect. That someone could easily be someone you know and care deeply about. Think about how COVID-19 is impacting our community.
So how do you show up for us? You can support the disability community by advocating for accessible vaccination. You can advocate for the disability community by recognizing that masking and vaccination should be enforced to allow for an inclusive environment. You can advocate for the disability community by demanding that government agencies work with disability-led organizations like Able SC because we know the needs of our community and how to reach them. You can advocate for the disability community by demanding that doctors and medical professionals seek anti-bias training towards people with disabilities. You can advocate for the disability community by talking to your neighbors about disrupting stereotypes and bias. Our lives are not collateral. You cannot overlook a third of the population. Our disability rights are human rights. #MyDisabledLifeisWorthy
The hashtag #MyDisabledLifeisWorthy was started by TikToker and disability influencer, Imani Barbarin (crutchesandspice.com). Imani has written a follow-up to the viral popularity of her hashtag, and the gaslighting that continues from the medical and non-disabled community. Gain more perspective by reading her blog, “I Started #MyDisabledLifeIsWorthy, Here’s Why The Response From Nondisabled People and Medical Professionals Should Alarm You.”
Written by Mary Alex Kopp
Director of Public Relations and Special Events, Able SC