I’ve been reflecting on what it means to live with a long-term diagnosis—one I’ve carried since childhood. As I come to terms with this part of myself, I keep circling back to two facts: I can drive, and I have a job. On the surface, these might seem like ordinary milestones, but for me, and for many others in the disability community, they become loaded symbols—used by others and sometimes by myself—to measure ability and worth.
The more time I’ve spent around the wider disability community, the more I’ve grown to disdain measuring the ability to work—or any single marker—as a measure of worth. I have met so many wonderful people who, for one reason or another, might not be able to work but are loving family members and friends. Their contributions and presence have immeasurable value, regardless of whether they can participate in traditional work. Our worth is not defined by employment or productivity, and it’s important to recognize the richness and diversity of ways people bring meaning to each other’s lives.
I’m grateful to be able to drive. I’m grateful to have a job that works with my sensory needs, not against them. But sometimes, these facts are weaponized. They’re held up as evidence that I’m not really disabled, that I’m “high-functioning,” that if I can do these things, disability must be a matter of effort, perseverance, or attitude. I become a poster child for overcoming, rather than a person with real needs and real challenges.
For example, I take pride—and I know my parents do, too—that I’ve never had to return to another inpatient hospitalization. That experience was hugely traumatic, but I would hesitate to ever say I “overcame” it. For years afterward, any time I felt myself sliding toward anything resembling sadness, I was overcome with panic that I was going to be hospitalized again. The idea of being under constant supervision, taking so much medication again, and being around people I didn’t know was terrifying. I feel the same way when one of my parents says I have overcome my autism in order to work full time. I didn’t overcome my brain’s wiring; I found a job that doesn’t require anything harmful, plays to my strengths, and rewards what I’m competent in doing. None of these comments take into account what it cost to achieve these results—the anxiety, lack of sleep, and maladaptive coping skills I used just to stay alive were immense.
When I enter spaces built for the disability community, I can feel like I don’t belong. Family members point to me as the “high-functioning” example—implying that others, who need more support, are somehow less. In those moments, I want people to see the full story: the hospitalizations, the failed medications, the meltdowns, the eating disorders, the professionals who never quite understood. I want them to know that “functioning” is not a fixed label. As a good friend told me, functioning fluctuates depending on the situation and the individual’s mental health.
There’s a façade to being “high functioning.” It’s comforting—for others. It means society doesn’t have to be as accommodating or as introspective about its own ableism. It lets people believe that if you just work hard enough, you can be “normal.” But the truth is, the ability to drive or work is not a measure of disability or struggle. It’s a fragment of a much larger, much messier reality.
I’m drawn to disability spaces because I hope my experiences will be understood, and that I’ll find people who get the invisible work it takes to live in a world not built for us. Yet I still worry I won’t be welcomed—that my ability to “fit in” to mainstream society somehow disqualifies me from needing community, support, or accommodations. Maybe some of that comes from my own insecurities. Maybe it’s also the result of a society that polices the borders of belonging, even within marginalized groups.
What I’ve observed is that belonging in many marginalized spaces often comes down to proving you’ve suffered enough to earn your place. When it comes to society accepting that someone is disabled, it can feel like the more you suffer in public, the better. I’ve always done my best to suffer in private. My patellar subluxations happened at home. My meltdowns have always happened at home or in a locked bathroom stall. In public, I do my best to make it to my car. My family has always had a front row seat to my suffering, as have my closest friends. But my suffering isn’t proof of my belonging. I wish that belonging didn’t require a public display of pain, and that invisible struggles were understood as just as real.
Here’s what I’m learning: Gratitude for what I can do and grief for what I struggle with can exist together. My accomplishments aren’t proof that I’m less disabled; they’re proof that disability is complex. I belong in disability spaces—not in spite of what I can do, but because of who I am and what I’ve lived through. If you relate, I hope you know that you belong too.
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