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Disability Rights - Blog Posts
Just made an account on Medium so I could read this. Made it about 1/3 through and I'm absolutely hooked and excited to finish it!! But first, time for a nap.
For the longest time, I have had trouble understanding FND - specifically whether it's just a shitty diagnosis made up by the medical system to gaslight people or if it's a genuine medical condition. This essay is rly helpful and has already broadened my understanding. It's incredibly well written, particularly bc of the extremely thorough research it's a result of
I am one of the most medically examined people in North America. For over a decade, no one could explain why I lost my ability to walk, speak, and use my hands. Why the lightning-like headaches? Why the ringing in my ears? Test after test came back negative. Doctors thought I might have a genetic abnormality no one's ever seen before, or a condition so rare that it had previously escaped medical classification. Then I got accepted to the top undiagnosed disease research program in the world, and they told me the only diagnosis I was unprepared to hear: it was Functional Neurological Disorder (FND), a much-misunderstood condition which was once known as Conversion Disorder, and before that, as Hysteria. And that was only the beginning of things getting weird. The essay above is the product of three years of research into the history, neuroscience, and politics of FND. It touches on the many medical failures that define the history of the disorder, the pervasive sexism and lazy mind-body dualism that prevented scholars from seeing it clearly, and why - finally - a better understanding may be at hand, with revolutionary implications for how we understand human consciousness and the experience of having a body.
FND fucked my life up. This is my reply. Thanks for reading.
I could not agree more! You get it. Sometimes (often I feel) being disabled does make you a burden and that's okay. There should be nothing wrong or shameful about that - it is simply stating facts and acknowledging reality.
as much as i appreciate the intent of the “being disabled doesn’t make you a burden” type posts, i don’t really agree. a lot of times being disabled DOES make you a burden
& i think that maybe we should try to shift focus to the fact that even if you’re a huge burden on society and can contribute absolutely nothing, you’re still a human being who deserves to exist.
like. there’s nothing morally wrong with being a burden on other people. you aren’t a bad person for needing to rely on others. you’re allowed to be a burden & disabled people who are burdens on others, i love you
Anti-vaxxer extremist RFK Jr, the US Health Secretary, is now actively trying to collect medical records of folks on the autism spectrum. First, he used dehumanizing and infantilizating language to insist people with autism won't 'pay taxes and live a 'normal life' which we all know is ableist bullshit and is literally a precursor to genocide. This man is a monster.
they are losing a limb, this exact time u decide to ignore this post.
10 children a day lose their limbs in Gaza. All hospitals in Gaza are basically barely functioning and the amputations are done in unsanitary conditions and without anesthesia
if you didn’t realize, ableism is actually bigotry and systemic ableism and inaccessibility are really oppression and it’s not something disabled people brought on ourselves by having bodies&minds that you think are inferior and therefore not worth fighting for. disabled people’s lives and wellbeing matter. we don’t have to earn our worthiness by doing “enough” to deserve a good life. nobody does.
Gazal was wounded on November 10th, when, as her family fled Gaza City’s Al-Shifa hospital, shrapnel pierced her left calf. To stop the bleeding, a doctor, who had no access to antiseptic or anesthesia, heated the blade of a kitchen knife and cauterized the wound. Within days, the gash ran with pus and began to smell. By mid-December, when Gazal’s family arrived at Nasser Medical Center—then Gaza’s largest functioning health-care facility—gangrene had set in, necessitating amputation at the hip. On December 17th, a projectile hit the children’s ward of Nasser. Gazal and her mother watched it enter their room, decapitating Gazal’s twelve-year-old roommate and causing the ceiling to collapse.
UNICEF estimates that a thousand children in Gaza have become amputees since the conflict began in October. “This is the biggest cohort of pediatric amputees in history,” Ghassan Abu-Sittah, a London-based plastic-and-reconstructive surgeon who specializes in pediatric trauma, told me recently.
Gaza has a large disabled population. Wissam is just one of tens of thousands, who need medication and care, facing the devastating choice of being slaughtered at home or out on the streets. All districts in Gaza but one have been declared combat zones.
Bathroom accessibility is not limited to mobility aids.
Bathroom accessibility is also having hooks to hang medical equipment.
I went to Walmart today and none of the bathroom stalls had hooks for my feeding tube backpack. Not even the disabled stall. They were intentionally removed by the store.
These hooks are important because we shouldn’t have to put our equipment on the floor and risk god knows what by contaminating our backpacks in the public bathroom.
Bathroom accessibility is having a fully equipped disabled stall or single use bathroom, hooks for medical equipment/bags, infant/child AND adult changing tables, sharps containers, free pads/tampons, and having a free to access, fully functioning and clean bathroom at all times.
last night my dad told me that i shouldn’t be worrying about current events because there’s nothing i can do about anything.
this morning my mom told me that yes she knows that all of this terrible stuff going on affects me directly but i can’t let it get me down.
and then they literally ask me why i want to kill myself why i want to move out so bad why i am always so distant to them.