Death by a Thousand Words: COVID-19 and the Pandemic of Ableist Media

“The disabled and elderly are the most likely to die from this virus.” I closed my eyes and beat back the desire to scream-cry at the news before me. It was March 2020, the COVID-19 pandemic had reached America, and the pandemic of Ableist Media was in full swing. 

I am in a unique position. I am both disabled and a professional communicator. Not only have I spent my entire life dissecting every conversation I’ve had or will have out of anxiety, but I have also decided to make a career out of it. In college I began taking media studies where my professors allowed me the opportunity to evaluate disability. I soon came to realize not only were disability stereotypes pervasive, but they often dictated how people would treat and react to me — and how much they would think my life was worth.

When it comes to ableism, non-disabled people are fairly predictable and uncreative. So, watching as the media repeated over and over that the “healthy” had nothing to fear from the virus, my stomach was pitted with dread. We would never be free of COVID-19.

While non-disabled people were willing to relax at the misguided belief that only the elderly and disabled would be affected by COVID, disabled people predicted it early: the coronavirus pandemic would be a mass disabling event. 

“Healthy” people were expected to recover from the virus after 14 days, but weeks after the virus hit the U.S., reports began flowing in of “otherwise healthy” and “relatively young people” needing double lung transplants, amputations, kidney transplants, dialysis and oxygen.

Non-disabled people only saw the potential outcomes of the virus as either life or death — they didn't account for the grey. Disabled people live in the grey. Even after the virus has left the system and patients are in “recovery,” about one in three COVID-19 patients experience long-term symptoms and disability. They live in the grey now with us too. 

It took time before what’s now known as Long Covid was even recognized. Though, in recent years, disabled people have increasingly been able to tell our own stories to the masses, disabled people still struggle to be believed as reliable narrators of our own experiences. News media still takes a paternalistic approach in covering disability stories and non-disabled people in close proximity to disabled people are more likely to be given platforms to speak about how our disabilities affect them rather than the disabled person in their lives.

Just this month, the Washington Post published a piece by Amber Ferguson titled, “Unpaid Caregivers: How America Treats Women Caring for Paralyzed Partners.” On Twitter, Ferguson shared that she’d spent “nearly a year” reporting on the struggles of women caring for paralyzed partners, with no mention of how the disabled partners are managing their own disabilities or what danger they may be in should their non-disabled partners choose to abandon them. Instead, they are nameless props, photographed next to their non-disabled wives whose names and ages are listed prominently in the captions. It’s the non-disabled wives’ story, after all.

This framing and erasure of disabled people’s lives in a story about America’s disregard for the disabled is not unique to the Washington Post. Most ableist news would lead you to believe that disabled lives are burdens on the economy; our murders, though  tragic, are understandable; our existence, disposable, and our deaths merciful. This narrow view of disability is only offset by the saccharine stories presenting people with disabilities as inspirational—an attempt at finding value in disabled bodyminds in a capitalistic society that ascribes none otherwise.

I remember the first time I noted this type of ableism in the news. In 2016, 14-year-old Jerika Bolen had decided to cease treatment for spinal muscular atrophy type 2 and end her life. I was angry. I couldn’t understand why. I have since come to understand that I wasn’t necessarily angry at Bolen — I could never make that decision for anyone else, nor judge her for doing so. No, I was not angry with her, I was angry at the news media production that took place surrounding her story. Somber coverage was quickly undercut by a sense of…fanfare.

Her last wish was to have a prom. Aptly titled “J’s Last Dance,” hundreds, many of whom did not know her, but who were “inspired by her story” showed up. As the Post Crescent reported: “The size of the crowd and the constant flow of guests stepping over to grab selfies got to be too much for Jerika on a few occasions.” Bolen herself noted that she was somewhat perplexed regarding the phenomenon. “It’s kind of scary because I don’t know what they’re looking up to me for.”

I remember watching the coverage terrified of the implication of the country’s fascination with Bolen’s story. On the one hand, I was well aware that I had no right to have an opinion on what she decided was best for herself; on the other, I was alarmed by the news’ framing of her decision as inspirational, and at times, aspirational.

Many non-disabled people, often without prompting, have told me that if they were to become disabled that they would want to die. “If I were you, I’d kill myself — but you’re brave.” To many non-disabled people, disability is worse than death. So, it is no wonder that, pre-COVID-19, the anti-vaccination movement was led by non-disabled parents who feared that vaccinations would cause their children to develop autism. Those misinformed parents believed it better to expose their child to potentially deadly diseases rather than the unsubstantiated risk of disability. 

Non-disabled parents of disabled children play a hefty role in the media narrative surrounding disability — often presenting their child’s diagnosis as the worst thing that can happen to their marriage, family, and finances. The non-profit Autism Speaks, has a history of linking autism to vaccines with no evidence, is cofounded by Bob Wright, the former president of NBC and the father of an autistic person. The organization is infamous within the disability community for its damaging portrayal of autistic people. In their “I Am Autism” commercial they described autism as working faster “than paediatric AIDS, cancer, and diabetes combined,” and credits autism with the destruction of marriages and families.

In another video, a mother muses over past thoughts of driving her autistic child off of a bridge—while that same child plays in the background within earshot. The organization also donates to the Judge Rotenberg Center who performs electroshock therapy on autistic children (yes, that is somehow legal).

Media institutions and producers seemingly co-sign this outlook on Autism. Sesame Street was celebrated by non-disabled members of their audience for partnering with the organization. Needless to say, that alarmed disabled people. Sia used Autism Speaks as advisors to her first film Music, which was widely panned for blatant ableism. In a gushing pre-release interview for the film, Shirley Halperin, executive editor of music for Variety Magazine, compares autistic people to "an inanimate object, like a wig" to which Sia enthusiastically nods her head and agrees, "Yeah!" Neither Halpern nor Variety apologized to the autistic community for those literally dehumanizing comments. Another reporter for Variety would call the ensuing backlash from the disability community to the movie and interview a “debate” without ever mentioning the publication’s role in the discourse.

Alongside parents and those on the periphery of disabled people’s lives, medical professionals have also taken their turn shaping the dehumanizing conversation around disability. For the Atlantic, oncologist Ezekiel Emanuel penned the essay “Why I Hope to Die at 75.” In the essay he points to the likelihood of developing a disability as he ages as the reason for his line of thinking. He writes, “...living too long is also a loss. It renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived. It robs us of our creativity and ability to contribute to work, society, the world.” Emanuel has helped shape the Biden Administration’s COVID-19 policy and has since been floated as a contender for FDA commissioner. 

When it was made public Emanuel’s involvement in the Biden administration’s pandemic response team, his essay was once again public discourse as conservatives lambasted Biden’s decision for Emanuel to be on the team. Why was someone who didn’t believe in the value of life beyond the age of 75 involved on a response team for a pandemic that was, at least initially, slated to harm the elderly the most?

While reporting on this took a partisan spin, the reality is that these beliefs are a part of our culture regardless of political affiliation. No matter how far left or far right, the only thing our society seems to agree on is that disabled people are inconveniences not worth living. Not being cognizant of this dynamic, as well as our propensity for binary thinking, within our society has been our greatest failure in communications and reporting surrounding the pandemic. 

None of what we have experienced during this pandemic is surprising. Why would Americans change their behaviour to save the disabled and elderly if we’re presented as disposable to begin with?

The disability community have been lambs to the slaughter in regards to the COVID-19 crisis. Early medical rationing guidelines diverted resources from disabled patients to those with a “greater return on investment.” Michael Hickson was one such patient whose physician refused to treat him for COVID-19 because he “had no quality of life” due to paralysis. 

While we as disabled people lived in fear of stories like his, non-disabled people have been given  false comfort by the idea.  Now officials have to plead with young adults to take the virus seriously as more and more "young" and "relatively healthy" people are dying. And the anti-vax movement made popular by ableist parents (in coordination with disorganized and conflicting public health directives) has put all of our lives at risk, as the COVID-19 virus mutates into stronger, deadlier variants. 

Ableism is one of our society’s greatest failings. Perpetuating it in reporting only causes death. The pandemic has not only laid bare our unwillingness to care for the disability community, but how ableism is effectively wielded to harm marginalized communities with the virus. In believing that only the disabled and elderly would be affected, the (currently) non-disabled unwittingly drew themselves closer to the cliff's edge.

Disability doesn’t care whether you're healthy or not, nor what your goals are. It can happen to anyone, moment by moment, breath, by breath, word by word. The only way to guarantee that all people can be safe is in a world where the needs of the disabled are centered.