As a disability advocate, Andrew Farkash had long been struck by the fact that many people seem to equate disability with unhappiness. In March 2018 he launched a new hashtag on Twitter – #DisabledJoy – to show how crucial joy is to disabled people.
“There’s a common misconception that you can’t be Disabled and happy,” Farkash wrote on Twitter. “That you can’t express joy, and if you do, you must not be hurting or Disabled anymore. I propose a new hashtag to empower us and show people otherwise: #DisabledJoy.”
In the years since, his post has been shared by thousands of disabled people around the world, many of whom have tweeted their own #DisabledJoy responses.
“Life as a disabled babe is hard, but it’s also really wonderful. I’m so here for #DisabledJoy!” wrote doctoral candidate Farrah Garland. In an earlier post, she wrote, “If suddenly getting a degenerative dx as a teen taught me anything it’s this: take risks, experiment, pursue your interests, be bold & brave, give no f**ks, tell people how you feel, do all the things, live fully while you can, ’cause that can all be gone in the blink of an eye.”
Others joined in exuberantly.
“[S]aw this tag #DisabledJoy and figured i’d try it! it’s meeeee a Queeer latino disabled boy living my best life,” wrote Luis on Twitter under the moniker Alien Superstar.
Over five years later, Luis, who has spinal muscular atrophy, continues to honor #DisabledJoy by surrounding himself with his chosen community. “I’m proud, happy, loved, unapologetically me in every way,” Luis told Mindsite News. “I’ve found a partner that loves me for me and made a chosen family that supports and cares for me no matter what.”
For the disabled and chronically ill community, the pandemic and the end of the Covid-19 pandemic emergency order brought new challenges. While it first seemed that hybrid and remote work and events would bring more options for community-building and flexibility, many of these options have been stripped away as some workplaces and other venues roll back such changes.
This had a significant impact on the LBGTQ community, where disability and queer activism have also been long connected. For example, queer people with HIV/AIDs and their allies had to fight for the United States government – which for years ignored people disabled and killed by HIV/AIDs – to take the epidemic seriously. In general, according to the Movement Advancement Project, LGBTQ+ people are more likely to report having a disability than non-LGBTQ+ people.
Still, disabled and chronically ill people around the globe are finding ways to thrive, not just survive, in an inaccessible world.
Among these people is Abby Mahler, who works in social media and communications in Los Angeles. Around once a month, she is outdoors at Oracle Tavern in Los Angeles’ Chinatown, taking photos. Drag kings dressed as everything from cowboys to Santa Claus perform skits and musical numbers in front of a cheering crowd, lit by strong stage lights reflecting the gathered glow of performers and audience. Mahler, equipped with a mask and camera, hangs back while capturing it all.
As someone at high risk for COVID-19 complications due to her lupus, Mahler spends most of her free time keeping socially distanced from other people in Los Angeles,.
“I take pictures, which I can do from a safe distance and in a way that is accessible for me,” Mahler said.
Although not everyone wears a mask, Mahler feels safe enough attending the Them Fatale Drag Kings events in her KN95 or 3M Aura since they’re outdoors. While Mahler is now being paid for her photography, she started to attend these drag king shows for another reason.
“It definitely brings me joy, knowing that we are a very visible space where everyone can experience this,” said Mahler, who enjoys drag king shows as a space where she and other members of the LGBTQ+ community can come together. Diagnosed with lupus after college after years of symptoms, she said, she got involved in the disability movement through queer activism.
Blind clinical psychologist Jennifer Pearlstein, PhD – who specializes in disability-affirmative mental health care – works as a post-doctoral fellow at the University of Washington in Rehabilitative Medicine. While dealing with symptoms from a disability can be challenging, Pearlstein says discrimination, isolation, and lack of accessibility also undermine mental health. When disabled and chronically ill people discover what brings them joy, she said, it “can help counteract feelings of hopelessness, depression, anxiety, and isolation that are often associated with chronic illness and disability.”
This is especially important since a 2020 report published by the Centers for Disease Control and Prevention found that disabled adults experience frequent mental distress at a rate 4.6 times more than adults without disabilities. Inaccessibility often contributes to mental health challenges faced by disabled people, researchers noted, and suggested offering more accessible mental health screenings and support to the disabled community. The physical symptoms of some disabilities and chronic illnesses can also be linked to certain mental health conditions. For instance, inflammation in lupus may play a role in people with lupus experiencing depression, according to a 2018 study.
Participating in art-related activities can be helpful for people’s mental health, research suggests. While mental health studies that include chronically ill and disabled subjects are limited, a small study published in May 2016 in the Art Therapy journal found that cortisol levels decreased in most of the 39 subjects following 45 minutes of art-making. When people are stressed, they have higher levels of cortisol – a steroid hormone – in their bloodstream.
Being laid off by an international cosmetics company in 2020 made Isabel Mata reflect on what helps her stay happy and in the moment. “I had to get in touch with who I am in a way that I hadn’t in a really long time,” she said. “I just started to lean into it and do game nights and do puzzles and like find anything I could to entertain myself.”
Mata, who has Hashimoto’s disease and is neurodivergent – including having attention-deficit/hyperactivity disorder and obsessive-compulsive disorder – found revisiting art, painting and other activities that she enjoyed as a kid to be revitalizing. Recently, she has also been trying to learn how to sew and embroider, too.
Through these activities, Mata was able to “gain some control back over” her life, she said. By working with her therapist and doing artwork, Mata has found that she “can regulate and self-soothe” any guilt she feels about not being productive all the time.
But while coping skills are invaluable, access to mental health care is also important – and it continues to be a problem.
Milwaukee-based E Jamar has a neuromuscular disability and complex post-traumatic stress disorder. Before the pandemic, they found a therapist that they like and trust.. Jamar finds that having a therapist that validates their concerns about COVID-19 is helping them survive in an inaccessible world.
“It is very grounding…grounding can be joy because it grounds me in my reality,” Jamar said.
This reality includes savoring the small things in life, like a really good cup of coffee. “Most people would be like, ‘Oh that’s nice,’” they said, “and I’m like ‘[this is] the highlight of my day.’”
While disabled and chronically ill people prioritize happiness while also taking care of their physical and mental health, they also reject the notion that their lives aren’t fulfilling.
“People with disabilities or chronic illnesses often receive the implicit or explicit message that their lives are not worth living or that they are destined to suffer,” Pearlstein said. Some chronically ill and disabled people are even on the receiving end of statements from non-disabled like they “wouldn’t want to be alive” if they had certain chronic conditions.
This has led to new hashtags being formed on Disability Twitter, to challenge non-disabled people’s perceptions of disabled people and also allow disabled people to find community over common frustrations. For example, disabled advocate and writer Imani Barbarin started the hashtag #MyDisabledLifeIsWorthy in January 2022 following comments from Centers for Disease Control and Prevention director Rochelle Walensky about the “encouraging news” that only people who “were unwell to begin with” were dying from COVID-19 complications.
“I started the hashtag #MyDisabledLifeIsWorthy because even in the midst of this moment, I knew there were other disabled people who were feeling just as lost, forgotten and betrayed,” Barbarin, who lives with cerebral palsy, wrote on her blog Crutches and Spice. “I believe the disability community has pushed the needle forward on this issue.”
Some disabled and chronically ill people take pride and find support in chronically ill and disabled communities, but the truth is, managing a fluctuating condition can be a lot of work. And that’s why taking breaks to focus on happiness is so important.
“We have to keep ourselves alive on top of all of the other stuff going on,” Mata said. “Finding joy is the only thing I can do.”
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