I found an interesting post about being a ‘good’ Ally to Disabled people.
Being a good ally to disabled people takes more than just supporting us with words
Embrace the multiply marginalized. Find ways to enable them to share their unique experiences in a public forum. Learn (and use) inoffensive language when discussing disability and/or queerness, gender or racial identity. And if you’re in a position to affect change in the lives of the multiply marginalized, even if you have their best interests at heart, always consult — or, better yet, include — those people in that conversation. Allyship includes knowing when to “pass the mic”, redirecting some opportunities and resources when you can see that someone is more harshly impacted by the topic at hand than you are. Remember, there should be “Nothing about us, without us!”
When planning events, the organizers must ensure that the spaces they manage — physical or digital— are accessible to people with disabilities. A good place to start is by asking attendees beforehand to ask if they need any accommodations and implementing universal design in built and digital environments so that all attendees have equitable experiences.
When disabled people express to you that you may be exhibiting ableist behavior, do not be defensive. Listen to them and make timely, meaningful changes to your actions. It is important to remember to create safe spaces for disabled people to speak for themselves and you should never try to speak for them.
If your allyship consists of only words and virtue signaling with no actionable steps toward liberation, it is not genuine and effectual allyship.
The allyship of those who don’t have disabilities is essential for the liberation of those who do.
- World Institute on Disability, Drew Dakessian, 05-12-2023
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Today I talked to someone and I quoted one of the doctors at work saying “Each allergy a patient states they have lessens their credibility, if they have more than 4 allergies they don’t have any allergies” as an examplreof terrible shit doctors say, and she agreed with the doctor. She has multiple allergies.
Doctors might just be the most unempathetic people, followed by professors and MBAs.
Med school doesn’t select for empathy, no. I hear so much terrible shit from doctors given as advise to me personally. I should start a list.
Like it doesn’t select on empathy but shouldn’t a teacher and doctor have empathy about those in their care? Like it doesn’t make sense, it would only improve the results and experience of those who come to them.
I can only say that i agree. More empathy from doctors would be great for everyone.
I have seen so many cases where doctors dismissed concerns of patients just for those problems to eventually result in death of said patient, it is truly sad.
I have never seen anything near that bad, but what I have seen has been bad enough.
I hope you never do
brother what. having allergies is literally a risk factor in developing allergies…
I already knew healthcare workers felt that way about me but it does hurt having it confirmed
You shouldn’t worry about that. The annoyance of medical personnel is fleeting, they have new people to be annoyed at every five minutes, also they get bored very easily.
Never ever worry about how your doctor perceives you, you can’t be a good enough patient to satisfy them, and they’ll forget whatever annoyance and likely what your name was in five minutes. Your responsibility in a medical context is to yourself, and your need for the best care you can get.
It does hurt my feelings but the main problem is that it does affect the quality of care I get :(
Someone asked me what my ‘five year plan’ for myself was, and I just went silent and shook my head. Planning for the future is a luxury for people with enough money to do so, but no one wants to hear that because they see it as an excuse. To them, all of my problems, including my disabilities and inability to keep a cushy job, in their eyes, are my own fault.
Whenever someone asks me 'where do you see yourself in five year’s I just want to say ‘maybe a psychward or something idk, why you have any contributions to make?’ I serious want to say ‘fuck off’ to those people and tell them to ‘play pretend as a dragon slayer at least that’s interesting playing pretend as go-getter-entreprenuer might be the worst on this planet to do’ seriously every able-bodied person is playing pretend, none wants this but they get enough treats like treating people like us to sympathy bullying/trolling and having paid slaves at vacations.
Mood. I remember one time I was asked that question, I flatly said “Under a bridge.” Was worth the senseless discussion that followed it, just to see those shocked faces
Yea, like those people are so high and mighty, they never consider that a someone on verge of homelessness or mental breakdown might working amoung them.
im just tryna make it through the week bestie
Yep, just been reading an infuriating reddit thread about this very topic.
They all possess a willful need to minimize and erase the realities of people under a certain ‘base line’, it’s disgusting.
Hello everyone. Just have a little gripe to vent about. Hope you all are doing well today 💜
vent cw ableism
“Never never open up to someone about your ND status, even if they themselves seem or proclaim they are ND.” A quote in my head that is unfortunately true I am realizing 😢
It was easier back when they just called me “weird” and sort of accepted me as a “werido” with quirks. Unspoken ridicule but it’s kinda made out to be a personal flaw.
Now when I am open about being audhd, they’re like “Hello HR? I have a report to make.” cuz now they’re dealing with someone who is actually born different, and will not change. And this acknowledgement makes them (again unfortunately both ND w/ ableism tendencies / and NT people) uncomfortable. 😔
Sometimes it feels like if you give it a label, people put you under a microscope and youre no longer a person, just a diagnosis
Sorry people suck, comrade
thank you 🫂
I wish I could just add on, “oh yeah, I’m AuDHD++” at the end of a sentence, and have it be a non-event. It sucks to have to feel like you have to hide such an important part of yourself. Hope the rest of your week is a little better.
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Talked to someone about systemic bias against minorities in healtchare and I was recommended a book about Muslim people’s experience of psychiatry and how to provide better care.
Just picked it up from the library. The intro seems uhhh. Turks are sorted into groups, one of which is “bigots” and another “Opportunists”. But one of the authors appears to be Turkish so I may just be being oversensitive.
Sounds like a dicy way to introduce you to the book they’re writing. Keep us updated, maybe it’s actually good
It concerns religious practise. “Bigot” is a person for whom religion is primarily a way to shame and sort into in and out groups, opportunists are opportunistically pious in that they will practise what benefits them or doesn’t cost them anything and will break the rules that are “in the way”, there’s non adherents who are… well, non adherents, etc. It is pretty cynical about Turkish people’s relationship to Islam tbh, although tbf looking at it sorting my own country into its relationship with Christianity all those categories would shake up much the same,. Anyway the point is that people aren’t monoliths with regards to their faith, and it says it will expand on this later with regards to care Then there’s a whole deal about the history of islam and psychology, which is really, really interesting so far but I’m not going to believe or relay a word of it until I’ve checked with another source because I have never read a medical textbook with a solid grasp of history.
I have never read a medical textbook with a solid grasp of history
I’ve never read a medical textbook, so this is new to me, but not surprising. I wonder it it’s systemic, just a non-mixing of genres, or both. I’m curious how often you see folks in the medical field who are also accredited in the humanities.
Not exactly what youre talking about but Medical Apartheid is about racism in Healthcare going back to cattle slavery in the US. I really recommend the book.
Also only somewhat related but Trauma and Recovery discusses mental health/trauma with an understanding of how misogyny impacts what kind of trauma and what kind of trauma patients are given sympathy and somewhat goes into the history of PTSD vs Histeria. The author is also the person who proposed the idea of Complex Post Traumatic Stress Disorder. I also really, really recommend it.
Another to the list! Thanks, comrade
For the first question, it’s been the case in every medical textbook I’ve ever opened. For the second, I wouldn’t know. I imagine it’s pretty limited. Might be more common in America what with their whole dual majoring thing.
There’s still huge stigma around having a Humanities degree here, and treated like it’s a waste to get an education in history or literature, so your guess is as good as mine. Have you had any mandatory classes that cover topics like classical medicine or at least the origins of current treatments? I bet the history of some Chinese medicinal treatments would be a really fun deep dive to get into.
Uhhhhhh No. They sorta say stuff like “People used to do X” but beyond that history isn’t really a thing. We have genuinely had more mention of Arnold Schwarzenegger in class than miasma theory or the four humours.
I’m offering hugs to anyone who needs and wants them today. Feel free to come and get one. I love you all
hugs you tightly
I am gonna glomp this group hug like it’s 2008 (consensually, of course)
Yes please!
not sure how to explain to my dad “even if i had the executive function to work, i can’t get a job due to being too obviously autistic” bc he’s kinda clearly on the spectrum too (not diagnosed tho), but there’s a big difference between how people treat “weird” men and women
Yeah. I remember trying to repackage hypervigilance+paranoia as attention to detail and discernment. And then there’s the accidental mentioning that I take medication which almost always gets a “but you’re so young!” along with some amount of suspicion. Or at least I think there’s suspicion; as mentioned earlier I do struggle with paranoia.
That and also once you’re established in your career more stuff is tolerated. The boss is “eccentric” you (All of us newly entering the job market) are “weird”.
Why are people so awful about the disabled? Just seen this awful person on reddit who won’t stop going on about how no disability or sickness is an excuse for not living a successful life and fulfilling all your dreams, that if you’re disabled and aren’t successfully fulfilling all your dreams it’s just because you’re lazy, enjoy being a victim and you might as well kys. He knows people who’ve had strokes or have no legs and they’re all successful and hard working so all disabled people need to stop being powerless victims.
Do people really not understand that there are different levels of disability, some more debilitating than others and that a lot of people also can’t access the support they need to do things with their lives? It’s amazing how much many people despise and feel contempt for us.
honestly that sounds like someone projecting their own failures in life onto others they see as failing “more”
Even in leftist spaces you can see it, I was watching a video about education system and literacy crisis, the host said half through the video “if you can’t study for a couple of hours even if you’re forced to them what can you do?” There was a post on reddit about dating disabled people and the post said some very basic things about expecting financial stability and traditional beauty standards and commentors unanimously said ‘what if the disabled people want a partner with financial stability’ ‘what if disabled people want a traditionally attractive partner’ like bastards fuck you, we would rather die than be ever partnered with one of your kind. We don’t want anything to do with you.
Well I had a consultation with the podiatrist today and I am booked in for 29th. Really dreading it. And they don’t even know if they can get it all done in one session as they can only safely use a limited amount of local anaesthetic in one go. I don’t know how I’ll manage if it gets badly infected again since I can’t take antibiotics any more. I’ll just have to douse it in iodine and hope that works.
Ask the podiatrist what you can do and be firm about your sensitivity to antibiotics. You have a right to be treated as best they are able, and they have a moral duty to do their best.
In reality though, medical staff, at least in the UK just don’t care. I mean it took nearly 4 years and finally getting my employer to pay for me to go private to get my cancer diagnosed because the NHS doctors couldn’t be bothered to investigate the symptoms. It’s taken 17 years of begging about my bladder issues before they finally sent me for tests to find out what’s caused it. It took about a year of begging for help with all of these new allergies before the doctor finally agreed to refer me to the allergy clinic and I still haven’t heard a thing about that, no appointment come through, no sign I’m on the waiting list or anything. They literally don’t care. I mean a few months ago when I had UTI the doctor prescribed me an antibiotic I know I’m allergic to and when I told her I’d had an allergic reaction to that one previously she just said “Well the computer tells me which antibiotic to prescribe for which germ and it’s telling me to prescribe this one so you have to have this one.”
I’m not defending healthcare staff. I’m saying that zealously advocating for yourself is important because otherwise they’ll try to weasel out of doing right. Your experience involves a lot of healthcare worker neglect, and I just want you to remember that you are a full person with equal rights who deserves to be seen by a professional doing their actual job.
This is not meant to be a criticism of you in any way, but having done a little bit of patient advocacy volunteering it makes a huge difference when you speak up for yourself.
I have advocated for myself til I’m blue in the face. Going back to the GP time and again until they do something, complaining to NHS England and the Patient Advice and Liaison Service, complaining to the GP surgery and my local MP. What more can I do? I know very well that I deserve adequate healthcare, but it is impossible no matter how much I advocate for myself. Maybe it makes a difference where you are, but here it does not. You say you’re not criticising me but there is a clear assumption in your post that I just haven’t tried hard enough.
I’m sorry if it came across that way. I understand why you feel as if I’m criticising you, and I could probably have worded it much better. I’m just very frustrated to see how you are treated and I wish I could do something.
It’s just that I get this whenever I talk about anything or ask for any help on here. The assumption is always that there’s so much help available and so much I could try, I just haven’t tried hard enough. Like on mutual aid if I ask for help with transport costs I get a thousand messages saying hAvE YoU trIEd tHIs followed by a whole long list of things that I’ve either already tried, aren’t relevant to the situation or aren’t applicable to me and delivered with a huge dose of judgment that I’m just too lazy to try the official channels of help, talking about difficulty accessing prescriptions or healthcare or the food bank or whatever it’s always the same WhY DoNt yOU juST dO tHIs and it’s just exhausting to deal with.
No I get it, I’m sorry if what I said was insensitive, I know you’re obviously doing what you can. I don’t mean to imply anything else. You best know your own experiences, and I don’t mean to imply that you don’t. Or that you’re just taking sitting back and not trying. I just experience a lot of people deferring to doctors when they shouldn’t, and I get so frustrated listening to the way you get the run around by the system.
has anyone read The Undying by Anne Boyer? It’s a marxist feminist cancer memoir and as someone with multiple severe chronic illnesses I thought it was a super cathartic read
I’ve added it to my list, ty. Did you find it online somewhere or did you pay for it?
np! I think I found it on either z-library or soulseek but I don’t remember which one
Sweet, I can probably find it then
The government really go out of their way to make it difficult to access treatment. My glasses broke and I managed to get an optician appointment. Due to being on benefits, the eye test and glasses are free for me. Now you would think that the government could just have a list of everyone who’s eligible, like when you get approved for benefits you just get added to the list. Then the optician or dentist could just look up the list when you arrive and see that you’re eligible for free treatment. But no! You have to bring proof of entitlement with you, mainly a benefit letter. It must be dated within a few months. But the DWP don’t send out letters that frequently, so you need to actually request one which can take weeks. You can’t wait weeks if it’s an emergency. In the end they let me just sign a declaration that I’m entitled to it, which was a relief as the dentist never lets me do that but turns me away if I don’t have a letter to show them. But what a rigmarole. Why do it like this?
Oh, and as if I need another reminder of how hideous I look, I passed a group of teenagers and one of them looked me up and down, laughed and said “Hello Nana.” I already know I look like I’m in my 70s, thanks.
At this point if you ever stab a politician it counts as self defense.
Well I’m glad you at least got the glasses, but the whole process just stinks. Edgy teens can fuck right off with that troll behavior, too. Hope your podiatrist appointment goes okay
Thank you.
My nutrient deficiencies seem to be worsening, not only do I have noticeable bald spots around my hairline but now all over the hair is breaking right off just a few inches away from my scalp. The roof of my mouth is also sore.
The bureaucracy to access the NHS is just neverending. Because I’m a cancer patient, I get all my prescriptions free. But can they just put me on a database so my prescriptions are automatically free? No, that would be too easy. Instead every few years I have to apply for a medical exemption certificate. I have to travel to the GP surgery to fill out a form and wait for the certificate to arrive and if my medical exemption lapses and I get a prescription in that time, I’ll get fined. So stupid. Well now I’ve got a letter telling me my exemption has run out and I have to apply for another certificate. Do I dare pick up my prescriptions in the meantime or will I be fined?
I will become a pirate and loot the Britain back for my region of the subcontinent and for my struggling British comrades like you!
Thank you!
Of course!!
Back to bleach baths for my eczema because it got infected
Now I have to do a weird balancing act between wet wrapping which creates the perfect environment for fungi and bacteria to grow but helps repair my fucked moisture barrier and bleach baths which kill the bacteria thats causing the current infection but dry out the skin and are only supposed to be used 3 times a week
Im actually really hoping my current dyshidrotic eczema flareup is mainly from the infection because otherwise a bunch of safe foods are off limits for me
I feel embarrassed to go to work tomorrow with my skin being so bad (also it keeps splitting and it hurts) but I cant stay home and dont know if the bath today killed off enough staph for it to not cause itching when I wrap tonight
If your colleagues aren’t understanding of your skin condition they’re assholes and their opinions don’t matter anyway. Sucks to be judged though.
One of my co-students is trying to start a career as an actual professional actor, she is skipping classes to negotiate with her agent.
She is also a full semester’s worth of exams behind due to failing basically every exam and having to redo them.
I want to shake her and tell her that it is going to be one or the other, or at least she needs to start arranging stuff so it doesn’t overlap with classes.
I guess it isn’t my responsibility but I’ve talked her out of flunking out before and helped her do her coursework before so at this point I’m invested I guess.What do you teach?
I don’ teach. I should probably have written “Fellow student”
I see hehehe
i have my hearing for my disability aid rejection soon and ive been losing my fucking mind stressing about it
you would think that “person can’t eat or sleep for weeks preceding any slightly stressful event” would be a bonus to my case but alas…
I understand, I feel sick thinking about leaving my house, it is my one safe place where I know where everything is.
CW: ED talk
Whenever even a little stress is triggered, I feel like eating until death but whenever I put a piece in my mouth I start crying
ED
I get like that when I’m only a little stressed but when I’m super stressed I can’t eat at all. I’m worried if I explain that they won’t believe me bc I’m fat
I am fat too so yea I understand to an extent when people don’t take your problems seriously
Went through this myself, I know how scary it is and platitudes won’t help but wishing you all the best.
thank you!
