ID: The words New Blog Post in the upper right hand corner, beside the title Misunderstanding Disability and Chronic Illness. Beneath is a flow chart that shows Irresponsible Journalism flows into Increased Misunderstanding that splits into Harassment and Under and Over Legislation.
A recent article was published by the Daily Mail. The headline Addicted to being sad: Teenage girls with invisible illnesses - known as 'Spoonies' - post TikToks of themselves crying or in hospital to generate thousands of likes - as experts raise concerns over internet-induced wave of mass anxiety is alarmist and misleading. It’s derived from a misunderstanding of chronic illness and disability, the medical system, and community. Misunderstanding minority communities leads to real harm, in the form of harassment, under- and over- legislation, and further marginalization.
Let’s break down that title. While I personally don’t identify with the term spoonie, many chronically ill people of all ages ascribe to the Spoon theory. Upon investigation, most of the contents of the Daily Mail article appear to be from a Substack post entitled, Hurts So Good that was published the day before the Daily Mail article. The experts “quoted” in the Daily Mail article are all out-of-context excerpts of quotes from this Substack post, repurposed to support this false narrative. At no point does any expert show concern that the spoonie community is “creating an internet induced wave of mass anxiety.” This Substack post specifically states, “Dr. Sullivan, the UW psychiatrist, hadn’t heard of spoonies. None of the experts I spoke to had.” We’ve all seen sensationalized headlines, but this type of article has a direct, negative impact on the disability and chronic illness communities, as it perpetuates a deep misunderstanding of what it’s actually like to be chronically ill and/or disabled.
Some people may struggle to view these misunderstandings of the disability and chronic illness experience as the truly harmful and insidious threat that they are. However we have seen misunderstanding transformed into harmful prejudice before. You may not be surprised to learn that, “Data from a nationally representative [2017] survey of LGBT people conducted by CAP [Center for American Progress] shows that 25.2 percent of LGBT respondents has experienced discrimination because of their sexual orientation or gender identity in the past year,” or that “LGBT people are nearly four times more likely than non-LGBT people to experience violent victimization, … according to a new study by the Williams Institute at UCLA School of Law.” As a queer person, my love life is often sexualized and misunderstood. While I don’t believe there is anything wrong with sexuality, specifically queer sexuality, not every aspect of my romantic relationship is sexual. I know when people see it that way, they are viewing it through a sexual lens due to a misunderstanding of queerness and sexuality. This misunderstanding can lead to harassment. Once, when I mentioned watching a movie with my partner, a stranger at a party asked if they could watch us have sex. Another time, while walking holding my partner’s hand, someone leaned out of their car to scream sexually harassing remarks. At a really good first date at a queer event, my date and I stepped outside–they leaned in for a kiss- our first kiss. I heard a commotion around us and broke off the kiss to see someone pointing their phone at us and recording while yelling, “I’m gonna put this on WorldStar!” (a video blog featuring “shocking events caught on video, music videos and assorted content targeted to young audiences,” according to Wikipedia). As we tried to walk away, a group of 3 or 4 people surrounded us and walked with us while trying to hold our hands and grope us. That harassment has stuck with me–I work not to hesitate when kissing my partner in public. I cannot think of a scenario, short of fame, where someone starts filming two strangers having a heterosexual, first kiss after a first date, much less threatening to upload it to a video blog for shocking events.
Each of these examples highlight a fundamental misunderstanding that led to prejudice. A new meta analysis of research relating to contact hypothesis finds that “all that's needed for greater understanding between groups is contact, period, in all but the most hostile and threatening conditions.” Basic understanding of minority experiences can work to grow empathy and tolerance in the majority. Imagine being hours into binge watching your favorite show with your partner and realizing you’re out of snacks! You and your heterosexual partner manage to pull your coats over your pajamas and trudge to the nearest convenience store. As you walk hand in hand down the street, someone leans out of their car to scream obscene, sexually harrassing remarks before threatening to follow you home. Beyond being upsetting, it’s confusing. It’s an aggressive overreaction to the sight of two people holding hands. The fact that I am queer doesn’t sexualize hand holding.
Those moments of in person harassment are not separate from the mass of anti-LGBTQ legislation we have seen in the last few years. There are currently more bills being introduced about female transgender student athletes nationally, than the number of out trans female student athletes. Misunderstanding of the disability community has also had an effect on the way we treat, understand, and legislate disabled minds and bodies. Until 1974, America had so-called ugly laws that prohibited people considered "diseased, maimed, mutilated or in any way deformed" from public spaces. Referencing a Chicago ugly law, Livia Gershon wrote “the law’s passage followed years of dehumanizing reporting on disabled panhandlers. One 1875 Chicago Tribune article decried the ‘disgraceful’ spectacle of ‘a thoroughfare being obstructed by the hideous monstrosities, which are only half human, begging for alms.’” Dehumanizing reporting can and has led to dehumanizing legislation. It is not without consequence.
Signed in 1990, the Americans with Disabilities Act is arguably the most famous piece of American disability legislation. But disability rights did not begin there. Section 504 of the 1973 Rehabilitation Act, enacted in 1973, states “‘no qualified individual with a disability in the United States shall be excluded from, denied the benefits of, or be subjected to discrimination under’ any program or activity that either receives Federal financial assistance or is conducted by any Executive agency or the United States Postal Service.” In The History of the Americans with Disabilities Act, Arlene Mayerson wrote, “Enactment of Section 504 evidenced Congress’ recognition that the inferior social and economic status of people with disabilities was not a consequence of the disability itself, but instead was a result of societal barriers and prejudices. As with racial minorities and women, Congress recognized that legislation was necessary to eradicate discriminatory policies and practices.” And yet, fifty years later, we haven’t eradicated discriminatory policies and practices.
Forced sterilization of disabled people is currently legal in 31 states. Disability is currently grounds for termination of parental rights in 35 states. Students with disabilities report bullying two to three times more than their nondisabled classmates. Many people with invisible illnesses and dynamic disabilities report harassment when using accessible parking. People who choose to continue wearing masks, some of whom are immunocompromised, are often met with resistance. The Americans with Disabilities Act (ADA), passed over 30 years ago now, while not the beginning, was never supposed to be the end of disability legislation. More needs to be done to advance the rights and create protections for disabled and chronically ill people.
Media like the Daily Mail article is part of a long history of sensationalized reporting that has led to the further marginalization of disabled people. The article pushes a poorly conceived perspective that puts people with unexplained symptoms and chronic illness in a lose/ lose situation–if they seek community they are fakers and if they don’t they lose vital access to tools and lived experience recommendations. Leah Lakshmi Piepzna-Samarasinha wrote in Care Work: Dreaming Disability Justice, “Stacey Milbern brought up the concept of ‘crip doulas’—other disabled people who help bring you into disability community or into a different kind of disability than you may have experienced before. The more seasoned disabled person who comes and sits with your new crip self and lets you know the hacks you might need, holds space for your feelings, and shares the community’s stories.” Disability history matters. Disability community changes and saves lives. Sharing disability knowledge through first hand accounts is vital.
This article highlights a common misconception about the medical community. While we have made great advancements medically in the last few decades, the medical community does not understand everything, especially when it comes to rare conditions. The Ehlers Danlos Society reports that, on average, it takes 10-12 years to get an Ehlers Danlos Syndrome diagnosis. Imagine experiencing the symptoms of a rare disease, without a diagnosis, support, or answers, for 10-12 years. Would you exhaust every avenue to find tools, support, and community when getting that diagnosis is delayed? What would your expectation be of that chronically ill person struggling to find a diagnosis?
As someone with Ehlers Danlos Syndrome (EDS), I have a unique perspective. I was diagnosed as a child due to many family member’s diagnoses and my unique gait. I’ve been diagnosed long enough to see the rise of social media while being young enough to actively engage in it. I didn’t meet another person with EDS (outside of my family) until I was 20. Even with a confirmed diagnosis, many of my doctors didn’t know much about Ehlers Danlos Syndrome. I was often expected to educate my doctors about EDS. My own access to information was very limited. I have seen that access to information explode with more online resources. My mom tells stories about her father (also diagnosed with EDS) going to medical libraries in New York City to read everything he could find about the illness. That was his only source of information other than his doctor. He was often left without answers. Today, I can access information from online medical journals, research papers, the Ehlers Danlos Society website, blog posts, YouTube videos, podcasts, books, and social media posts. Access to information has been a vital part of managing my chronic conditions.
Today, online communities help people with chronic illness and disabilities share helpful tools, therapies, treatments, and providers. Many of my providers often encourage me to seek out others’ lived experiences and recommendations through online communities. A research paper was recently published in the Journal of Medical Internet Research entitled, The Internet Knows More Than My Physician: Qualitative Interview Study of People With Rare Diseases and How They Use Online Support Groups. The article states, “There are no Food and Drug Administration–approved drug treatments for >95% of all rare diseases. Therefore, patients with genetic disorders are under considerable pressure to learn about their disease and how they can manage their pain.” Given my mix of rare diagnoses, asking the opinion of other people who share my comorbidities may be more valuable than my doctor’s best guesses. They appreciate the value in anecdotal data. Most importantly, they want me to have as much information as possible, which can be hard when dealing with a rare diagnosis.
Like any other part of the internet, not every aspect of online medical communities is positive. Personally, I felt disconnected from the mass of newly diagnosed people looking for information- it just wasn’t where I was at in my journey. However, I was willing to give online communities a try at the urging of my geneticist. He explained that a local Washington state Ehlers Danlos group was using Facebook to organize, communicate, and share files—including their coveted provider recommendation spreadsheet. They met twice a year in person and he attended and spoke at every meeting. He explained that with his busy schedule, this was often the best way to keep in open communication with his patients. I attended many of those meetings until the beginning of the COVID-19 pandemic. The community I built through that group has been incredibly important. And with the pandemic many of those connections moved primarily to online communication. Criticizing chronically ill people for seeking community in ways that are more accessible, for example online during a global pandemic, is cruel. Chronically ill and disabled people deserve community, too.
It is not the responsibility of disabled people to educate able bodied people, even though they often do. It is imperative that able bodied people learn about disability and dispel the myths that lead to harassment, inappropriate or inadequate legislation, and further marginalization that plagues the disability and chronic illness communities. Start with what feels accessible to you. Maybe that’s setting a goal to read one book a year about disability, or to watch shows written by and/or starring disabled people. Maybe you will choose to take a class on disability justice, or to work on the relationships you have with the disabled people in your life. Just as misunderstanding of minority communities can lead to harassment, under- and over- legislation, and further marginalization; greater understanding of and respect for minority communities is a powerful antidote.
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