Flaunting my zebra striped nails and one of my numerous braces for #EDSAwarenessMonth! Extreme hyper mobility is a weird thing, because on one hand, I can do some really interesting contortion tricks...but on the other hand, if I yawn too hard, I might dislocate my jaw.
This is problematic when my condition causes chronic fatigue & therefore a lot of yawning. I have a brace for just about every joint in my body, & several canes with handles of various shapes & sizes, because my accessibility/mobility needs vary day by day.
Before the age of three, I already knew how to pop my own elbows back into place & I don't remember a single time in my life when I wasn't in at least a moderate amount of pain.
EDS awareness is important, because I was an adult before I realized that chronic pain, fatigue, hyper mobility, and frequent joint dislocations isn't normal. Ehlers-Danlos Syndrome and Hyper Mobility Spectrum Disorders are sorely under-diagnosed and often misunderstood.
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Today, I want to talk about growing up with a disability that nobody recognized as a disability. In fact, not a single one of my doctors so much as breathed the word disabled until I was 19 and signing paperwork to enroll me in FMLA so I wouldn't get fired if I had to miss work.
Before I could even talk, I knew how to pop my own elbows back into place, because dislocations were that frequent. "But she'll grow out of it," said the doctors. Then, I learned to talk and frequently expressed that I was in pain. "It's just growing pains," said the doctors.
Then, I began to fall. My ankles would roll sideways at a 90-degree angle and I would fall. Usually when I was just walking, but sometimes even if I was just standing still. "It's because your growing," said the doctors.
I can't tell you the number of times someone found out that I'm asexual and asked, "Is it because of your disability"? This is harmful on many fronts. First of all, no. My spouse is also asexual and is able-bodied, so obviously, that's not the case.
But questions like these stem from deeper prejudices. Disabled people are constantly desexualized and infantilized. Many disabled people live healthy and fulfilling sex lives, and my asexuality is not a byproduct or "symptom" of my disabilities.
Asexuality as an orientation is widely medicalized. Many people (including some doctors) think that asexuality is not a valid orientation and, therefore, there must be something "wrong" that's causing it.
Hey everyone! For those of you just meeting me for the first time, allow me to introduce myself in more detail. My name is Courtney Lane (she/her), and I am a Victorian Hair Artist, Historian, and Professional Weirdo based in Kansas City, USA. 🧵 1/11
My business is called Never Forgotten where I make bespoke works of art and jewelry out of hair! A majority of my work is done for sentimental purposes, and I can work with the hair of your beloved humans, horses, and even small animals.🧵 2/11
Hairwork has been my full-time profession for over 6 years. In addition to making the art myself, I also teach workshops on a variety of hairwork techniques, and I offer lectures on the history of this nearly forgotten art form. neverforgottencl.com🧵 3/11
Ok, time to talk about my psychiatrist experience.
For the course of approx 12 months from mid 2018 to mid 2019, I was abused and mistreated by a psychiatrist who is considered to be one of the main 'experts' in Adult ADHD in Melbourne.
I shrugged off my concerns initially because I was so happy to finally be treated and medicated for my ADHD. In my first appointment, he pressured me to let me Mum join the appointment even though she was only there because she gave me a lift.
he directed almost of the questions in that first appointment. I barely got a word in. Within 45 minutes, after a series of very leading questions asked to my Mum (not to me), he had diagnosed me with two serious mental illnesses and written me several scripts.
One thing I think about a lot is how, in research, disabled people are always viewed as participants. But it goes beyond that. We're a resource, to take from, always to take and take and take from.
And we're subjected to some really problematic stuff, but we're told we should be thankful, because the research will benefit us in the end.
This is why I think disabled led research is so needed. Not just in disability spaces, but all kinds of research. We have to be researchers as well s participants, and it's also vital that non-disabled researchers become educated about social justice.
As a blind person, one of the most difficult things I experience is other people's negative and inaccurate misconceptions about blindness. This happens to all disabled people of course.
Often people approach me, wanting to solve the "problem" of blindness with new technologies, because they see a blind person and assume that person can't live or function in society. I then have the task of explaining that it is this attitude that is the problem.
I'm not saying there are things I can't do. But those things are typically a result of an inaccessible world. If more things were actually accessible, I wouldn't be denied opportunities.