Curate, connect, and discover
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.
Disability History Crash Course
Throughout history, disabilities has been viewed in many different ways, from curses and bad luck, to simply unfortunate differences some are born with. In some ancient civilizations, disabled individuals were often marginalized or viewed through religious/superstitious lenses. In ancient Greece and Rome, individuals with physical or mental disabilities were abandoned or ostracized from civilization.
In Europe during the Middle Ages, disabilities were often linked to sin, religious disfavor, or divine punishment, which lead to social exile. Often, if the disabled individuals received care, it was from family members or religious institutions. As the age of Enlightenment came to prominence in the 17th and 18th centuries, society began to shift towards medicalization, which changed the view of disability from punishment, to a natural defect, to be diagnosed and treated.
The 19th and 20th century brought about the rise of sanatoriums, asylums, and institutions designed as a way to 'treat' people with disabilities. This new approach of 'treatment' was, in reality, a way to hide disabled people from the public, and often lead to isolation and severe medical mistreatment of the patients. This, along with the creation of Eugenics movements, lead to many harmful stigmas surrounding disability.
As disability rights movements gained momentum in the mid-20th century, different bills and acts were passed in order to protect disabled people. Some landmark events were the Independent Living Movement and the passing of the Americans with Disabilities Act (1990). As the U.S. shifted away from seclusion and towards inclusion, equality, and accessibility, many of the stigmas surrounding disability began to easy, and people began to see disability as not just a medical issue, but as a social and political issue.
Internship in the Theater turned out to be quite an underwhelming technically and overwhelming morally type of disaster… I have the hope, that it will get better, once people start trusting me being on fellow human being, but for now they just alienate me most of the time. Only the acting folx are truly nice and don’t care for my looks and the mask, they treat me kindly. Once again, Disabled people behave more humanly than non-Disabled folx while the whole world pretends like Disbaled people need to be dehumanised.
Sadly I don’t read atm, but started to play Sims Medieval (Pirates and Nobles) and it’s quite fun except of a racist name for Roma people. Treating roma and sinti like they are mythical creatures out of fables, putting them together with “the knight, the wizard, the elves, the princess..” like it’s a school play.. really not cool. Don’t understand why they still didn’t change it.
You might think that I'm joking when I say that we need cyborg rights to be codified into law, but I honestly think that, given the pace of development of medical implants and the rights issues raised by having proprietary technologies becoming part of a human body, I think that this is absolutely essential for bodily autonomy, disability rights, and human rights more generally. This has already become an issue, and it will only become a larger issue moving forwards.
One more
HEY PLEASE READ !!
if you guys AT ALL enjoy using the internet whether it's for news, entertainment, or communication purposes there is a bill floating around right now that has a good possibility of being passed that will influence the way we ALL use the internet. this bill is called KOSA and it presents itself as "kids online safety act" but in reality it is and will try to sensor SO much important information out there about LGBTQ+, POC communities, feminism and women's rights, and so much more. the bill targets mainly people under 17 but this bill will affect adults too. your favorite social media and websites will become highly cleansed from anything the government deems as "dangerous" to children online. one of the ways they are trying to ensure kids aren't accessing content that is "dangerous" enforces EVERYONE to upload private information or a photo of your ID to access social media apps and websites. IF YOU CARE AT ALL ABOUT PROTECTING FREE SPEACH ON THE INTERNET AND THE WAY WE USE IT TO COMMUNICATE PLEASE HELP ENSURE THAT THIS BILL DOES NOT PASS.
CALL YOUR REPRESENTATIVES AND SENATORS TO SHOE THAT YOU DO NOT SUPPORT THE KOSA BILL.
PLEASE REBLOG AND SHARE !!!!
HERE IS A FREE PETITION YOU CAN SIGN TO HELP:
Planning for a flight now consists of planning out how to document the legal violations the airline is inevitably going to commit.
Lead life with empathy. If you want to be an actual ally that can help make a difference, you have to lead life with empathy and compassion. We teach children all the time to treat others the way we want to be treated, so why not continue that into adulthood?
Not so fun fact: my high schools policy for disabled fire evacuation was just to not
This needs to be talked about more, I’m sure my school wasn’t the only shitty one. We had no evac plans for our disabilities. We just had to stand next to the elevator and wait for help to come or for someone to call it drill and send us back, traumatised, to our classes.
When I moved to my college, they had to tell me what a personalised evacuation plan was. When we had a fire drill, my new teacher had to guide me out of the room as I shook in fear from the times we had sat upstairs on the third floor smelling smoke from a kitchen fire and not knowing how big that was or if someone was gonna come get us.
I was lucky, back then, that 2 sixteen year olds were in their last year, and had done this countless times before. They comforted me while I freaked out. That one was a drill. When there were fires, they were small and easily controlled, but when those came I was older, I comforted the younger students as we all stood there with the stench of burning filling our nostrils. Sometimes we’d move up the hall to the hallway balcony areas and lean over to see if the cafeteria was the culprit. We’d text friends outside asking for explanations, updates. Was it real, was it drill, where is the fire?
Sometimes I find myself beating myself up. Sometimes I say there was never any real threat, stop being dramatic.
But that’s not fair, no teenagers, no children, should have to spend a day every few months in fear waiting for a fire that might not be there. It’s cruel and it’s fucking lazy.
As a disabled person, I must ask that you think twice before posting stuff like that? Disabled isnt a bad word. We dont have to be sweet and angelic to deserve basic human rights. We dont need to find love in an abled-normative way. We can speak for ourselves, thank you. Listen to actual disabled people instead of infantilizing them and maybe you'll learn to see us as People. *you* are part of the problem. I wish you all the best in educating yourself, since I'm sure malice wasn't your intention
Oh! I'm so sorry if I offended you (or anyone). I know I should educate myself more. I have met some people with special needs/disabilities, but I know I was over-generalizing it. I have a slight disability myself and I was just sharing my experiences and my point of view on things I have experienced having a disability. I can tell you I definitely see you as people, NOT objects or infants. And you definitely deserve basic human rights. I agree with everything you said there and I'm very sorry if I said some things the wrong way. I think maybe you took some of the things I said differently than I thought people would. Definitely, malice is not my intention and I can assure you that I have only good intentions and I am only trying to help people with disabilities. You definitely educated me and gave me a different perspective on disabilities, so thank you for that. I will definitely educate myself more!
If there's one thing I want you to do as the world gets colder, get kinder. They will comment on things that don't make sense just to be mad. They will start fights just to see you get mad.
They are mad. You might be mad. But you don't have to be mad at one another.
Just...don't participate in petty debates that you will never win. That aren't meant to be won. Especially as we descend again into the hellscape that is this type of rhetoric and cold world.
Be nicer to neighbors, friends, family. Take losses. Be the bigger person even when it HURTS. And when it comes to family and friends, it will. Of course don't concede your values. But don't push people away you depend on and rely on and want in your life either unless you have no choice.
Love yourself more than anyone. If there's any time to be selfish it's also now. Save your grace and ignore trolls. Ignore people and conversations and communities that don't serve you. If you have hobbies that don't serve you anymore, cut them off. Social media you don't use? Delete it.
Lastly, don't spend the next four years wishing you did more. Do more. Or do as much as you can. Your best is good enough. Stay in the moment. You don't need to dwell on the past, and you don't need to have a five year plan. Don't let the trauma of your environment shut you in. That's what I did during the last Presidency of this type, and I do regret it. Because I burnt out.
I love you. One day we will be able to love and live with reckless abandon again. With freedoms and liberties assured. Until then, we are here for one another, and we will get through it.
We did it once, we will do it again.