creating disabled families through twitter
Marginalized communities still find ways to support our growth even among the racist, ableist, xenophobic, and sexist vitriol that Twitter loves to ignore and even encourage. Em, a bisexual Latinx woman, derived joy when in discovering the disabled community on Twitter. Aleicia Deon, a queer Black woman, once received a paypal deposit that allowed her to go to a sickle cell clinic. And Angel Powell, a Black queer woman, uses Twitter to foster and maintain a chosen family can prove difficult to create in-person. These are just three among many who find solace in hashtags like #SpoonieChat and the meaningful relationships that start online.
Em is a white Latinx college student in her 20s who lives with epilepsy, clinical depression, and generalized anxiety. Em’s epilepsy materialized in new ways when she began socializing in middle school. Her grand mal seizures would strike at any time, making for an unpredictable and sometimes unstable daily life. Over email she told me that her classmates had more energy which sometimes worried her family. They still use these worries to sometimes set strict limits and ask invasive questions. Em appreciates the support from her mother and youngest brother at home but she “doesn’t have close friendships.” She finds it difficult to maintain an active social life when seizures and extreme fatigue often mean cancelling plans at the last minute. Last year she estimated that she spent 90% of her day at home due to epilepsy.
Twitter houses much of Em’s social interaction as an unemployed college student. “I am anxious all the time because I don’t know when I’m going to have a seizure and it’s worse when I leave my house,” she writes. Twitter allows agency; she can choose when, with whom, and how frequently she engages socially without needing to center the feelings of able-bodied people. Em finds that “abled people don’t want to hear about broken noses, upped doses, EEGs, and how exhausted and hurt your body feels.” Online support groups didn’t work for her but Twitter allows her a space to laugh and avoid people who tell her “don’t let epilepsy stop you from doing whatever you want,” as if she does not know her own limits. Angel Powell, a Black queer woman living in Western New York, agrees that with Em: she is “not an inspiration because of [her] circumstances,” she’s a “damn human.”
Angel Powell lives with depression, anxiety, and cerebral palsy. But in truth, “clitorference” remains one of the biggest barriers she faces. She doesn’t “like the idea of sexuality being stripped from you for having a medicalized body.” She desires romantic love, but instead finds that the queer women she’s been attracted often infantilize her because of her disability. This pattern continues because “people don’t teach their kids about ableism and nine out of ten times they become adults who still don’t know about it either,” Powell writes. Reducing ableism among children means parents need to encourage their children to ask questions. However adults “who have access to google” must recognize the value in her intellectual disability labor and they can pay up for their education.
Powell now confidently asserts her online contributions but she grew up without much in-person social interaction. Her family found it easier for her little sister to engage because it required less time and accessibility. Angel can’t walk, but her sister could. Rather than creating opportunities her family shirked their responsibility. These early childhood experiences created Powell’s intense aversion to public interactions. When we spoke in 2017 Powell confided that she hadn’t ridden “the metro train in 2 years” because of anxiety and fear of laughter.
Powell survives ableism and a lack of support from her family of origin by maintaining a chosen family. She found folks who she knows love her, and folks with whom she doesn’t “have to perform for to keep their love and attention.” So much so that after years of feeling undeserving, seemingly simple things like having her sister-friend ask Powell what she needed “in terms of supporting [her] and [her] illnesses” made a big difference. Alecia Deon shares similar identities — Black, queer, mid-to-late twenties — and tactics around chosen family, but their stories differ based on their social locations.
Alecia Deon is the only child of a middle class family, a Caribbean immigrant, and a survivor of sickle cell anemia — a genetic condition that affects primarily Black people. We talked on the phone about Jasmine Baily, a fantastic Black woman poet with whom Deon spent time in various hospital wards. Although Baily died years ago of sickle cell anemia, at 20 years old both Baily and Deon were ten years older than most of the other patients in the ward. So although Deon thinks that every birthday may be the last, she received a lot of hope when she met a 60-year old person living with sickle cell.
Given the very real threat of life-and-death that so many people face, relationships prove to be one of the hardest things to navigate. Deon luckily receives supportive from very loving parents. But after experiencing severe pain at the hospital for two to three weeks she usually does not want to talk to or see anyone. She can’t think straight, her mind is foggy, and she tends to self-isolate. But she also recognizes that “you can’t shut out and shut down with people you’re in a relationship with.”
For a long time she had unrealistic expectations for those in her life, and rightfully so. She constantly deals with white male doctors who endanger her life when they mischaracterize her 6’ 3” Black woman frame as the embodiment of superhuman strength. They then doubt that she needs seemingly high dosages of pain medication and sometimes deny her necessary medical care. For context: a sickle cell-induced crisis feels like a “big truck trying to go through a tunnel that it can’t fit through,” so Deon learned early on to take nothing for granted. But traumatic experiences like these helped her gain perspective for the folks in her life who she formerly expected to act like everything was normal in instances where she actually might die.
Disabled and/or chronically ill people make it work. And they do so among friends and family who do not always provide the support they need. They face well-meaning prayers without any tangible action, inappropriate questions on a daily basis, and unsolicited advice from everybody and their mama. One axis of oppression — race, class, gender, sexuality, etc.— can be heard enough, but “adding” another axis like disability as another axis means multiplication. Deon’s upbringing affords her privilege even as her existence as Black queer woman living with sickle cell anemia comes with struggle. Powell’s chosen family supports her even as the built environment locks her out of daily human interaction. Em can go to school part time even as she fears for her next seizure.
If we really do believe in intersectionality as a framework for moving through the world, then we must do our best to be quiet, listen, and respond to the needs of our communities. We can help as able-bodied people, neurotypical people, and even as disabled people ourselves. We our own research instead of placing the burden on those who live with particular disabilities and/or conditions. We can think twice before we ask questions. And we can look at hashtags like #DisabilityWishlists, #SpoonieChat, and #ActuallyAutistic to compensate the labor these folks perform.