One time I was talking to another wheelchair user I'd just met about traveling with a wheelchair, and she casually said, "...but, I mean, I'm a relatively 'able' disabled person."
I responded, "oh, like you're 'ambulatory'?"
She replied that, no, she is a complete para. She meant people who deal with chronic fatigue, pain, etc...
She was, without realizing it, classifying disabilities like mine as more disabling than hers, and I (also oblivious) had framed her disability as more disabling than mine.
The moral of this story is threefold:
1) you can't "rank" disabilities,
2) the most "disabling" disability is any disability that is unfamiliar bc you don't know what skills and strategies it might require in order to live well (making it seem more daunting to experience), and
We talk a lot about disabled ppl serving as inspiration porn for the ableds, but I want to also discuss how the ableds feel entitled to "inspire" your disabilities away. Basically every disabled person has had a nondisabled person (or 50) give them a specific sort of "pep talk".
It's the usual "overcoming" BS but they don't just doubt your knowledge of your own bodymind and feel entitled to strip you of your autonomy and impose their will, they also think you've been waiting your whole life for them to do it -- for them to so thoroughly dehumanize you.
They think they're your savior. You (obviously?) need saving and it's your lucky day: they're here to save you whether you like it or not, so prepare to have your boundaries thoroughly violated in the name of fun and adventure.
My parents are remodeling their home. They've made it wheelchair accessible -- even the shower. They live in the US, and I live in Canada, but they just want visits to be comfortable for me. They didn't even mention it until it was underway.
Access should be the norm (in families and in society), but it's not, and I'm therefore quite touched by this gesture of care.
(Also another reason to build for accessibility is that everyone who doesn't die suddenly eventually becomes disabled...)
When drs gatekeep mobility aids because they don't want a person to "lose function", and w/o a mobility aid that person cannot participate in activities they find meaningful, we need to be clear that drs aren't actually "preserving function" but rather compulsory able-bodiedness.
They're always like, "if you use a wheelchair you'll lose function and end up using a wheelchair." Okaaay?
It's not like my choices were keep running marathons or use a wheelchair... Truly the failure of doctors to comprehend the lives of their patients is just staggering sometimes.
When I started using a mobility aid, folks were surprised that I "jumped right to a wheelchair". One therapist even called it "a bit drastic" (yes, I fired him). Society believes that mobility aids exist on a spectrum of severity. This is not the case.
Mobility aids respond to particular embodied needs. You cannot "rank" a person's disability on the basis of their mobility aid (in fact, you cannot rank a person's disability -- period).
I did not "start with" a rollator, cane, or crutches because they did not respond to my needs (including orthostatic issues and the need to mitigate fatigue). They also were not appropriate for my body because of joint instability in my shoulders, elbows, and wrists.
I want to push back on this term "invisible disabilities" because so much of the time it is actually just a nondisabled person's failure to "perceive" someone's disability. It is just poor bodymind literacy coupled with the assumption that nondisability is the norm.
If you go into every situation assuming a person is nondisabled AND you don't have the disability competence to notice the many subtle ways we inhabit and signal our disabilities, of course you'll miss most of us.
Failure to perceive disability and pick up on disability culture cues does not render disability "invisible".
“Fairness” to nondisabled people has no place in accessibility conversations.
Disabled people are often told that meeting our needs would be "unfair" to nondisabled people. This is is both a distraction from and mischaracterization of the purpose of accessibility.
Accessibility aims to address the structural injustices of a world that enables some bodyminds (and constructs them as "normal" and "nondisabled") at the expense of other bodyminds (which are disabled through marginalization and exclusion).
I continue to struggle with BC's COVID approach. It seems like authorities assume folks will take risks so the province's goals should be to lessen the possibility of COVID transmission in those situations and facilitate contact tracing when some transmission inevitably occurs...
It's solid harm reduction logic -- EXCEPT that I don't think it translates well to the COVID-19 pandemic. The folks engaging in the higher risk nonessential behaviours are NOT the folks at the highest risk of being harmed by those behaviours.
So basically privileged people are risking marginalized people's lives without their consent, and the province is just like "be kind, be calm, be safe 🙃".
Ok #DisabilityTwitter I need your help. I am cripping my Intro to Human Geog course. I want to talk about disability culture, and I am looking for examples. Please use #DisabilityCultureIs to tell me how your recognize disability culture when you encounter it. (And please RT!)
I will start: #DisabilityCultureIs when you hear the word "straws" and prepare to defend your very existence.
Also, #DisabilityCultureIs knowing that when a friend says "don't forget your meds", they mean "I love you".
Proud older sibling moment: my little sister got a low exam grade in an inaccessible stats for MPHs class with a TA who didn't understand the material. He told her that maybe she is "one of those public health people who is just bad at math"...
My sister TAs calc in the math department, works in a biostats lab, and is currently applying to biostats PhD programs.
I have come into possession of lobster mushrooms, golden chanterelles, morels, and sea asparagus. Super excited about my hobbity party of one this weekend. 💚
Just cooked up the lobster mushrooms with butter and society garlic (Tulbaghia violacea -- an allium alternative I tolerate) and tossed that into some gf penne with chicken and cream sauce. I am a happy hobbit.
When all of your mushroom deliveries come on the same day... or when you're the sort of person to get multiple mushroom deliveries?!
(lion's mane, pearl oyster, and chestnut mushrooms)
Diagnoses matter. Too many EDSers are told there's no point in a diagnosis because there's no cure. That's straight-up negligent doctoring and it harms patients physically and psychologically. #MedTwitter
A diagnosis has allowed me to:
- appropriately and effectively manage symptoms,
- get regular screening for common complications/co-occurring conditions (and catch some early!),
- shorten the length of time to diagnosis/treatment of common complications/co-occurring conditions,
- understand how my body works in ways that differ from non-mutants (and therefore understand how to correctly care for my body),
- stop gaslighting myself and achieve greater psychological wellbeing,
- understand risks specific to EDS bodies and how to protect myself from them,
I'd love to start a "what's the worst advice you've ever been given" thread for chronically ill people, but we all know it's yoga.
(Also, yes, this is a joke. I know that people have gotten much worse advice than yoga -- just maybe not as frequently. [<= That was also a joke.] But FYI: yoga IS actually dangerous for some folks!)
Hey pals! Can't keep up with the comments today, so pls consider your righteous indignation "liked". As ever, in solidarity with all you magnificent chronically ill and crip/disabled folk navigating abled nonsense!
How many hours of uncompensated labour do you do in order to access care, accommodations, education, work, transportation, housing, etc... that nondisabled people do not have to do in order to access those same things?!
How much could you bill if you were an employee rather than an externality? Think about it: 2 hrs of your doctor's job (at their salary!), 4 hrs of medical admin, 3 hrs of university admin, 5 hrs of insurance admin, 1 hr as a transit manager, 8 hrs as a researcher...
I had to choose between two of my favourite doctors today to avoid duplicating treatment plans, and even though it's nice to be consolidating rather than expanding my medical team, I'm sad about it. How do you choose between an elder Toph Beifong and a profane Doctor Strange?! 😭
I am going to miss "Doctor Strange" so much! His bedside manner was so flawlessly odd and unpretentious and genuinely interested. We would just have a nice chat about weird things and then he'd stab me in the head with needles. It was a great relationship.
An example of conversations with "Doctor Strange":
Him: You know, 25% of what doctors learn in med school is out of date once we start practicing. Like allergies! It used to be, "don't expose kids to these common allergens too early". Now as soon as they start eating 1/3