‘All of Us Will Become Disabled and Sick’
When thinking about disability pride — specifically the content I wanted to create for Disability Pride Month — I found myself returning to a quote from “Care Work: Dreaming Disability Justice” by Leah Lakshmi Piepzna-Samarasinha.
“[A] core part of disability justice work [is] making the next world, the world we want […] I believe that our work in creating the new world depends on [our dreams]—because all of us will become disabled and sick …”
All of us will become disabled and sick.
This is an aspect of disability advocacy that I rarely see addressed. Society paints disability as something unique. A phenomenon of sorts, ranging from physical conditions to developmental disorders such as autism. Disability is characterized by separation and, in many cases, isolation — we are abnormal, and we are treated as such. Our deviations aren’t just unwelcome, they are feared.
Disabled people are human, but not wholly human. Subhuman. We’re part of society, but only to a certain extent. We are kept in our place through a complex tangle of laws and resolutions — protected under the Affordable Care Act, but often unable to marry for fear of losing our benefits, and God forbid we have more than $2,000 in assets at any given point in time. That would just be unseemly.
But the truth is that disability is ubiquitous. It is part and parcel of life on planet Earth, but we can’t treat it as such; otherwise, disabled people would have just as much worth as your average, able-bodied joe, and who would serve as our inspiration porn?
All of us will become disabled and sick.
Disability is set apart so able-bodied advocates can feel self-righteous. They’re perfectly healthy, but aren’t they so kind and generous for donating to the Muscular Dystrophy Association Telethon. They care so much for the poor kids with their broken bodies and their sad little lives! They really are the best of humanity. And so we maintain the status quo, with the righteous and the pitied playing their respective parts.
We don’t talk about the 6.4% of people ages 65 and older in the U.S. who exhibit symptoms of dementia (a disability). We don’t talk about the 14.7% of people worldwide who live with migraines (a disability). We don’t talk about the 7.2% of children under 18 who struggle with ADHD, or the countless adults who have it but go undiagnosed for years (a disability that affects everything from education to career to socialization).
We talk about the one or two per 100,000 people who have SMA, a rare disease that only affects folks who were unlucky enough to win the genetic lotto. We talk about the blind, the deaf, the physically disabled — people who are so estranged from normal society that they become their own population.
All of us will become disabled and sick.
We talk about the aging population. How, for the first time in history, people over the age of 65 outnumber children under 5. It is, again, a play at separation — we need to deal with this crisis, but not because it affects me, not because I, too, will one day become sick and disabled.
All it takes is a car accident, or a really bad cold, for the healthy individual to become othered, to join the ranks of the infirm. But we don’t think of it that way, and so our advocacy loses its urgency. We resort to annual telethons and black-and-white billboards, forgetting all the while that health is temporary, and disability a certainty.
July is Disability Pride Month. Many of the people I follow on social media have posted about it — people who identify as disabled, or have loved ones with a disability. So-called “allies” have been remarkably silent. So it’s no surprise that the Supplemental Security Income (SSI) Restoration Act of 2021 has been making the rounds in the disability community and nowhere else.
Among other things, the SSI Restoration Act would remove the marriage penalty and increase income limitations without restrictions. This bill could singlehandedly revolutionize disability in the U.S., but no one’s talking about it, despite the fact that it stands to affect everyone.
Everyone benefits from marriage equality.
Everyone benefits from an increase in investable assets.
You might not be disabled, but chances are you will be at some point in your life. Would you like to marry your longtime partner without penalty? Would you like to have more than $2,000 in your bank account at any given point in time? Would you like to — at the very least — make minimum wage?
This July, I want us to remember that disability isn’t special. It isn’t something that happens to lazy people, or people who were born with bad genes. Disability is ubiquitous, and natural, and contrary to popular belief, it doesn’t have to be the end of the world.
All of us will become disabled and sick. And that includes you.
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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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