On Disability Showing Up

Disability shows up differently for everyone and doesn’t look a certain way.

For me, being disabled looks like: Genuinely not knowing how to respond to “How are you?” A camera roll filled with photos of hospital parking garage signs to remember where I parked. Video calls where others leave energized and I am depleted and they have no idea. Having strangers tell me I’m not disabled, I’m “resilient.” Knowing the weather based on my head pressure before I look at the forecast. Waiting for answers I’ll have to figure out on my own.

Being harmed in spaces that are self-proclaimed as safe. Working and parenting with limited spoons. Having to explain to my kids why I’m going to another doctor, even though I don’t appear sick. Being misgendered by medical professionals and having to misgender myself on binary forms constantly. Uprooting days for inconclusive consults in the city when they could’ve been done via telehealth. Never forgetting my pill organizer on vacations. Being told I could be “cured” if I just changed my diet. Carrying my seizure emergency meds in my fanny pack during sessions. Journaling scribbled timelines to document appointments and ailments. Dreading scheduling appointments on the phone and disputing claims with health insurance. Knowing I’ll never be able to feel most of my left hand beyond pins and needles.

Being blocked for reminding folks on social media to rethink ableist language. Disappointment when the media gets representation wrong and sheer joy when it finally gets it right. Feeling like a burden for asking for accessibility needs. Masking my shyness, anxiety, and neurodiversity for the sake of self-advocacy or socialization. Feeling isolated at in-person gatherings during a pandemic. Holding privileges in many ways, including having access to rapid COVID tests and buffering my bank account for emergency illness-related client refunds. Creating work that centers disability and consent through a trauma-informed lens. Feeling gaslit when people don’t wear masks in public.

But most importantly, being surrounded by a sense of collective care in the disability community.

How does disability show up for you?