i started coursework in disability studies in august.
what’s happened since?
i’ve gotten angry and i’ve gotten sad.
outrage has befallen me and a sizable part of the innocence and optimism i’ve been known to walk with has faltered.
i’m jaded, but i’m not sorry about it. . .
…(here it goes – deep breath)…
i am disabled and i’m not sorry about it.
i’m not sorry to any person who lives with a disease or condition who refuses to see themselves as disabled.
i’m not sorry that as a person with diabetes, i claim disability status.
i’m not sorry because i don’t see people with disability as the one-dimensional bad and sad creatures our culture has decided they are.
i’m not sorry, because i am disabled and that is okay. i need no counseling, nor therapy. no pity-party here. because i am not making a value statement. don’t you want to live in a world where being out about diabetes is okay?, where being out about a disability is accepted and welcomed?
i haven’t always been so bold, but here today… i’ve learned to be and i’m still not sorry about it…
BECAUSE: impairments reside in the physical realm, but disability (largely) does not.
i am disabled by the society that judges the food i put in my mouth and my “correlating” dress size, but doesn’t judge another un-attached from the label for the same things.
i am disabled by the outside world demanding “you are NOT disabled if you have diabetes”, leaving no room to step back into my illness and relent when i need to, seek accommodations when i need to, recharge when i need to. we are stuck complaining about never getting a break from chronic illness in a culture demanding we refuse to ask for one. as if being disabled were the bottom of the barrel, worst thing that could ever ever ever be, we feed into this idea that disability = broken. but, who decided that anyway? why don’t we question this before declaring “NON-DISABLED, ABLE-BODIED, THAT’S ME!!!!”?
i am disabled by the pirate-like business the healthcare system has become. i’m made to spend my money on maintaining what physiologically doesn’t work in my body. i can’t decide to travel with the money i have to use for insulin, for pump supplies. what i can do out in the world is limited by the country i live in – who punishes me for my disease by making me pay for it.
i am disabled by the slander and shaming i hear from health care providers, from strangers, in movie and tv show scripts, in classes – attributing diabetes to ‘choice’ and ‘lifestyle,’ throwing blame around like it is unquestionably deserved.
i am disabled by every harsh statistic about diabetes and mortality (because that’s the main narrative we seem to use for funding) permeating every corner the community i seek shelter in, reminding me how grim will be the health of my future body. i could use that messaging as fuel, and fight against the possibility, but i can’t live my whole life ‘fighting’ anything. i have no spoons for that.
i am disabled by the narrow recommendations for self-management offered and validated by the CDC and ADA. what i need most, peer-support, absent entirely. if a healthcare provider sees peer-support as ‘ineffective’ because the CDC and ADA do not sanction it, then how can i rely on them to suggest it in a time of need?
i am disabled, and i’m not sorry.
i am disabled and strong enough to say so, even with the possibility of being ostracized for coming out and saying it.
what i know is i will never again fight against the disability status because disability is more than bad and sad, because people with disabilities of all kinds deserve respect and full personhood, because i know what doing so inadvertently says about other people living with disability.
there are many enriching ways to live beyond what i experience as such, and as i would want someone without diabetes to respect my life as more than the difficulty observed, i respect the lives of those with disability enough to not drag the negatively associated label down further by setting myself apart from it.
i am disabled, and proud.
I attended the American Diabetes Association Youth Congress as a high school senior with 10 years of type 1, and advocated for the Americans with Disabilities Act, even though I felt and told everyone that diabetes was not a disability. I now disagree with my high school self, 20+ yrs later. But that “nothing wrong with me” mentality may have served me well thru some harrowing diabetes situations…denial can be useful sometimes, maybe? At any rate, I now feel very much like you. It’s a fine line and a rocky balance between owning an identity of disability with a (mostly sometimes) invisible illness, and “passing.” Both take so much work, and neither is easy. Thank you for writing and sharing this post.