- 10 Nov, 2025 *
I am scared of the point in disability when you are seemingly just living for other people, not yourself. The point where all of your personal goals and dreams have been shattered, developing a new identity is gatekept by your abilities and your caregivers, and your purpose seems to just be existing as a reminder to everyone else that they should be grateful for their health and life.
You can’t die (yet), because that would make everyone sad, and it would cease to be the inspirational story of never giving up and always smiling through it all that they want it to be. They want to look at you, be happy they’re not you, but simultaneously also want you to keep fighting so they know that even if they became you, that life is still worthwhile and happy. Bearable. It…
- 10 Nov, 2025 *
I am scared of the point in disability when you are seemingly just living for other people, not yourself. The point where all of your personal goals and dreams have been shattered, developing a new identity is gatekept by your abilities and your caregivers, and your purpose seems to just be existing as a reminder to everyone else that they should be grateful for their health and life.
You can’t die (yet), because that would make everyone sad, and it would cease to be the inspirational story of never giving up and always smiling through it all that they want it to be. They want to look at you, be happy they’re not you, but simultaneously also want you to keep fighting so they know that even if they became you, that life is still worthwhile and happy. Bearable. It’s too painful to admit that maybe it isn’t sometimes.
I think people love disability stories like Stephen Hawking because people like him were still able to leave a mark, did what they love, had tools to move, and functioned (mostly) under capitalism. They love to think that they will also score similarly on the disability roulette, and I hope so too, but we also tend to forget that these people often had vastly different resources and privileges than many, too.
It reminds me of the liberal disability advocacy that tends to push mostly healthy people in the foreground with a caption that’s something like “I might look different, but I’m just like you!”. The message tends to skew towards something like “People with Down Syndrome can still work in your company!”, fighting discrimination based on a sort of ableist lookism or fear of wheelchairs, and focusing on the fact that they can still be productive. You can see something similar happening in certain autism advocacy groups led by allistic parents, who love to push low-needs geniuses (“savants”) as the face of autism. The cynical might see this as an admission of the fact that many can only stomach the disabled if they somehow make up for their disability via another good or even exceptional quality that can be monetized or contributes to the greater good.
Many disabled people are just not that. It might be the reverse: looking just like you, but the illness(es) make studying, reading, writing, thinking, or formulating and voicing things, difficult or impossible. It doesn’t even have to be outright cognitive damage - chronic fatigue, chronic pain, lots of doctor’s appointments and more can make education hard, especially if it’s in a school setting or a degree, in a rigid schedule, lots of text.
When my chronic pain is high, I can’t even keep up with my Zoom classes, and I can’t retain what I read. Writing is okay, but speaking is hard, and I blank every couple seconds, and stop multiple times in the sentence, searching for words. I lose words, I mix them up, I stutter. That’s the same person writing all of these posts though, the same person enrolled in a law degree, the same person holding down a fulltime job. It’s the same person with dreams and goals that might be significantly altered or shattered down the road against my will because of illness progression.
I thought about all of this because of a YouTuber I like to watch, Vereena Sayed.
She has created videos for years, but I only discovered her last year when I was very sick. I loved seeing her on her pink motorcycle, riding with her dad while I was in bed, in pain. But soon after, I found out that she was in a horrible accident since she uploaded those videos, and barely survived. She was in a coma, with 9 broken bones, a shattered spine, a broken jaw and a TBI. For a long time, no videos were uploaded, but recently, she has started uploading again. She’s showing very candidly what her life now looks like: A wheelchair, needing help 24/7, lots of physiotherapy and… pain. On Instagram, she recently admitted that she tried to kill herself. In her latest video, she says:
“I hope this video motivates you to not end up like me.”
The accident wasn’t her fault; there’s nothing she could have done to avoid this.
It hurts, seeing her have to resign herself to being a memorial or an inspirational story, because her old goals and path are dead, and there is not much else to do than live for others when you can’t live for yourself (yet, or ever).
It also reminds me of another quote I heard recently, that I also wrote in my notebook:
“I’m scared of losing the rest of my worth.”
Reply via email Published 10 Nov, 2025