Guess we've been toxic all along

The dude in the video is a medical professional and really well known for his information on physical symptoms on melinated skin.

-fae

Here's the thing: I don't see how this actually hurts anyone.

For one, this is exactly what I saw people say about nonbinary people all throughout my childhood. I saw people complain that all NB identities online where "cloudgender" and "stargender", or that people would say they were "trans out of spite", and point at that and say how those people weren't really trans, and in fact, they made the real transgenders look bad. And all that accomplished was bullying kids online and making me repress my own weird identity for years because I internalized that gender had to make sense to cis people to be valid. So I'm not going to take "well, teens on tumblr act weird about it!" as a reason why this concept is intrinsically harmful. I'm extremely mentally ill, I'm physically disabled and it has fucked up my life, and I don't see how someone making cutesy flags on their personal tumblr to express their personal feelings is hurting me. Again, the people who this are most likely expressing their real feelings, and I don't see how shaming them for having those feelings is helpful. Weird people online are not responsible for or even really able to impact the wider system of ableism and sanism.

Also, from some quick research, it seems the term "transabled" was coined by a man who co-ran an organization for BIID to have an easier term for people with BIID, so I feel like the differentiation is arbitrary and seems similar to dividing binary trans people and people who use neogenders.

If someone has dysphoria over their body, and it distresses them, I'm not going to tell them they are an awful person for having those feelings or expressing them or seeking to alleviate them. I can imagine how distressing and lonely that feels, and how comforting it can be to know you aren't the only person to experience something strange and upsetting. I'm not gonna begrudge people for forming a community and making language to describe themselves. Especially given the potential for self-harm; if people feel strongly enough about their desire to be disabled that they would harm themselves, then from a harm reduction standpoint, the best thing to do is listen to them about their needs and provide them with support.

The biggest forces of ableism in my life are not being able to work, my city being extremely inaccessible, the ableist medical system, and both internalized ableism and ableism from abled people in my life. I have bigger issues to worry about than people making flags online about wanting to be paraplegic. They do not impact me or my life.

And these people are humans, not cardboard cuttouts without emotions. When they are doing things, they aren't acting out of malice, they are expressing themselves. Even if making flags and terms online was materially harmful, seeing as these are feelings that they are not choosing to have, I see the best response as being education and conversation that leads to mutual understanding. I see transabled people, including the weird cringy tumblr ones, as people expressing their struggles and desires and experiences. I've been too hurt by people mocking weird identities they don't understand and insisting people expressing their struggles are personally responsible for systemic issues to turn around and do the same thing to another group, just because I don't understand them or they make me uncomfortable. Disabled and mentally ill people have so many bigger issues to deal with- bullying transabled people is much easier than dealing with those issues, and it gives us a feeling of control or like we are able to do something, but all it does is cause more suffering.

a long long time ago - in a galaxy far away - I thought I was transabled. I always preferred BIID as a label though. I thought I shouldn't have 20/20 vision and that there was something wrong with the way I see. But my optometrist disagreed with me because I could figure out the chart thing. - turns out I have an astigmatism but that's not the point.

I never told a soul about this, just did a few little things that seemed quirky but made me feel better - wearing an eye patch for a while.

I actually entered a study on BIID out of a university in Nova Scotia to try and be a data point.. But between the initial interview in 2016 and the follow up interview in 2019 I discovered my autism and transness. Suddenly I wasn't transabled anymore.

Turns out I do see weird but its not my eyes, its my processing speed. Turns out wanting your boobs chopped off from the day they started growing is a trans thing.

As a result of my history of BIID I fully accept people who say they have it. Even if it is a result of something else they have but have not been diagnosed/accommodated for. If you have a chronic nerve issue with your right knee, maybe it feels 'broken' in some way where you conclude that it isn't supposed to be there but no doctor has ever taken your pain seriously. I fully believe that people have BIID and are transabled, and I think it is a failure on the part of the medical community.

this is tangentially related to discourse about the deliberate and medically irresponsible adderall shortage, but the biggest Problem with how we address the multiple acute substance use crises going on in the US right now is that not enough people want to frame the issue as "life is extremely miserable for many people, and drugs are fun and pleasurable and using drugs makes people feel happy and less miserable".

The mainstream answer is gonna be "well, if their lives are so miserable they should just change them" and I'm like "with what fucking magic wand" because if it was that easy to stop being miserable everyone would be doing it already

But the response is going to be "I don't know, but drugs definitely aren't the answer." And yet! If the question is "how do I stop feeling so terrible all the time" then drugs are AN answer!

Are they the best answer? Well, they're a temporary answer; the misery that made you want to do drugs is still there when you sober up, so it's not ideal. But no one wants to improve housing and food insecurity or workplace conditions or health care because it would cost a whole lot of money, and because a substantial segment of the US population is not quite ready to admit that they think it would be better if poor people just fucking died, but that doesn't stop them from pursuing it as a policy goal.

Better I guess to deprive patients of the medications they need to function and also give the cops more power to invade people's lives because that never escalates anything

Agree hard w everything that sibyl is saying here but also:

I really don't give a shit WHY ADHD med scrips are going up and framing it as " 'fakers' taking advantage of the medical system to get speed " fundamentally disregards that in decades gone by these minmaxers or 'recreational' users would have eventually been swept into using diet pills lile ephedra or even street drugs like cocaine or meth or crack and been treated and judged as drug addicts

Like, from a harm reduction stand point it's a million times better this way, even if it sucks for me personally to skip meds on weekends to be sure I can survive work through a med delay (because I have 3 weeks of laundry piled up)(and 2 weeks of recycling to go out)(and my sink is full)

I think there's also not enough talk about the consequence of demonizing certain meds and then replacing them with things that either work on a completely different mechanism, or are just less effective at what you're taking them for.

Like ok, so you restrict normal opioid pain killers, what are you rxing instead?

Well you make tramadol, that for some insane reason is considered "safer" because you added an SNRI, except that means you now have SNRI side effects, dependency issues (I possibly had my tongue swollen for a week over those and have a grudge over it) and then people still abuse it anyway, so now you can't have that one either.

Antidepressents in general get prescribed but it's literally more of the bullshit with them normally where you are gambling losing months of your life throwing them at your pain and hoping one sticks and they take forever to find out if they work.

Anti-convolsants can treat nerve pain, so you rx that... for everything including shit like joint pain that it doesn't work on, and now people have to deal with THOSE horrible side effects when they realize that and need to come off it. Also I have seen people say doctors don't want to rx THAT either now?

Ok so what about NSAIDs? well they aren't too bad for inflammatory pain, but you have to take the max dose and they will probably punch a hole in your stomach eventually. You can take prednisone for inflammation but like. Do I even have to explain how shit that one is?

How about weed? Weed is great right? It works on everything and has no risks? Too much weed fucks up your digestive system too, and it's incredibly hit or miss on how it effects people. Ironically, a weed rx often will amount to people getting a benefit of "stoned off ass" and nothing else, so you're literally encouraging the behavior that you were supposedly scared of with the pain killers! Great job!

And that's just LEGAL MEDICATION and not going into the fact I have to go to a fucking chiropractor because the regular hospital pain clinics would only offer me CBT for a pinched nerve. I got lucky and it helped but obviously for some people having to resort to alt shit like that goes Very Badly. For me it thankfully means I no longer am risking fucking skin cancer from my entire back being tye-dyed from heating pad burns because those aren't 100% safe either.

Like for some people, one of the alternatives WILL be better than opioids anyway, depending on what pain I have sometimes one of them IS better. I still use a heating pad for my digestive issues. My nerve pain comes back if my chiro is out of the office too long. I will never abuse my pain medication out of pure spite, but you better believe I'm stuck having to try to knock myself out with weed a lot because I am legally allowed to walk into the dispensery and buy more than I could ever use.

The consequence of drug restrictions is people have to use less ideal options and sometimes the best they'll be able to do is fuck themselves up. You can buy as much alcohol as you want! And it works REALLY GOOD if your body sucks at absorbing pills! So if your goal is "no one should use drugs to get high" you are shooting yourself in the foot.

Hope Reese, The Real Problems With Psychiatry

I'm slightly confused about what they think a scientific finding is if not an expert consensus. Like... a scientific finding is just a thing that the scientific community has reached a consensus about. Is the complaint that the experts are not scientists?

it’s less so about the fact that “experts” came together and more so about the subjectivity of diagnoses within this particular field which calls into question the ability to be an expert and make those sorts of decisions in the first place. in psychiatry, commonly comorbid pre-existing symptoms are grouped together rather than empirical evidence unique to those disorders, leading to frequent overlap and/or misdiagnosis.

that is only worsened by the fact that your doctor’s perception of you and your symptoms are all that really matter, not any quantifiable data, not any biomarkers because there are none (if you didn’t know this, the whole chemical imbalance theory has been disproved plenty of times and there’s even a statement from the chair of the DSM-5 task force which i will link at the end), and so on. it’s all subjective, and no other field does this. that’s not to say biases can’t still affect your treatment in other medical fields, but that your diagnosis is not contingent on someone else’s interpretation. the numbers and reports do that work for us! but not here.

and all of this is even more so a problem because the FDA requires psychiatric meds to be tied to a specific diagnosis in the DSM, meaning these diagnoses hold real power in the lives of those who take them so what happens when someone receives a medication they don’t need? that really harms them? permanently? this happens more often than you’d expect in psychiatry specifically. in mad studies, we argue not that you shouldn’t use psychiatric meds but that you should be entirely informed on its components, side effects, withdrawal symptoms, etc. and you should have the bodily autonomy decide when you do or do not want those meds. in psychiatry, that is often not an option and you can be what’s called “chemically incarcerated.”

disclaimer: if you find diagnoses to be helpful, that’s all good for you! they can be helpful as shorthand for those commonly comorbid symptoms i mentioned earlier. i get that. no one wants to list out all day every individual thing they experience. but it’s important to recognize the flaws in the system as well and question heavily and critically who gets to define what abnormal behavior is to begin with (see: drapteomania aka enslaved Africans running away from plantations, hysteria aka women who stood up for themselves or were deemed abnormal, homosexuality, prolonged grief disorder, even “duty to care” in nazi germany. this shit kills people. it really is that serious).

im not sure if you are systemically marginalized in any way and i do not like to make assumptions, but especially if you are a person of color, more specifically Black like i am, this is all extremely terrifying and we should always be questioning who is in charge of any particular industrial complex. for more on that, not specific to psychiatry, read this article by georgetown professor Olúfẹ́mi O. Táíwò where he talks about the gamification of politics and how we live inside the constructions of those in power:

i could add a lot more but i can tell i’m already rambling. TLDR: it’s okay for experts to come together to a consensus in any other medical field using empirical data, but because that biological data does not exist here and the diagnoses are entirely subjective, the ability to be an expert in psychiatry is very, very shaky grounds and can be really harmful actually.

— reaux (she/they)

I'd like to add homosexuality, asexuality, transness, "female hysteria", and even slaves that didn't want to be slaves have all been added to the DSM before.

The issue isn't scientists aren't experts. It's the fact that our views on what we consider a "mental disorder" is based on the world view of the ruling class and what benefits them. The ruling class is allocishet abled white men

Of course they'll call me mentally ill for being asexual because how dare I, an AFAB, not want to have sex with them.

How dare I, an AFAB, even THINK I have equal rights and talk back to them.

Like you really gotta look at the weird ass diagnoses that are are considered "normal" in 2023 and be like "What the fuck were they even thinking". "Expert" on the psychiatric field is heavily biased based on standards created by and for the ruling class, and is highly subjective to what said ruling class wants to be true.

They want me to be considered mentally ill for having a smartass fucking mouth and not being sexually active because it gives them the opportunity to have control over me. (And this is just based on my person experience and doesn't get into how the psychiatric field harms people of color because I'm not qualified to talk about it.)

-fae

Also I bring this up a lot, but it's worth mentioning that being concerned with a persistent symptom and seeking treatment for it is currently included in the DSM-5. Mental illness is going to the doctor when you experience symptoms that aren't getting better on their own.

Like hysteria never really went away as a label ig, they just renamed it. It doesn't matter if the stuff that explicitly targeted specific marginalized people's autonomy isn't in there anymore, if they want you to be disabled you will be.

The tags on my whiteness post said to me that white people (at least those that are racially aware) and colonized natives perhaps have more in common than most people think. Or at least more than they talk about it in public.

Not that they're the same. Misogyny and transphobia are not the same, but they are both veins of oppression in a patriarchy. Similar.

In the same way, that empty hollowness white ppl feel where your culture should be is not unlike what I feel as a native, from what I've read of your accounts. Learning your ancestors chose whiteness and safety and comfort over culture and identity. That now you have nothing because of the colonization and assimilation your grandparents experienced when they got to the USA. Because of whiteness. Because of the power it has even just as a concept in the US.

We experience these for much different reasons and at least your loss bought you privilege.

... but they aren't total opposites either. A hollowness where you know rich history used to be? Having culture but feeling a disconnect where you know More used to be? Feeling like you only have scraps of the culture your family used to have? Clinging to what you can get your hands on? Feeling like it's so detached that it's not really yours?

I get that and I bet I'm not the only one.

The USA's habit for white supremacy, racism, and colonization hurt all of us.

And it will benefit all of us to discard the systems those things built. They're still there and still hurting every one of us.

We can build a future that benefits us all instead as soon as we all start working on that together.

But we can't do that if some of us refuse to admit the system is what's hurting us. If we refuse to acknowledge that even with perfect politicians our Systems would still prevent progress because they are built on outdated and white supremacist ideals we'll just continue to suffer together under those systems instead.

We can't keep attacking each other just because some of us refuse to look at the ideologies fueling our current reality.

#i always frame the journey my ancestors took to whiteness (conditional or otherwise) as a deal with the fucking devil#you feel it the most as a jewish person but it's a conversation i've had a lot with my irish-irish friends about my irish half#how irish-americans paid for their whiteness by becoming the enforcers of white supremacy (i.e. police)#and honestly i see a lot of parallels in this same vein between diasporic jews and indigenous people#the erasure of language and pressure to assimilate#being constantly displaced and/or murdered because we were inconvenient or someone felt entitled to what little we had#being cast as a scapegoat or some other unifying enemy for those trying to consolidate power#the goalposts that move from 'if you convert you're our equal' to 'actually you're just bad by birth bc you're part of these people'#so yeah op this is a really lovely statement of solidarity#right back at you

[Image description: a GIF of a Native American person saying, “Just ‘cause you can’t see something don’t make it less real. Eh?”. End description.]

Also I don't think people make the connection enough of how much that void contributes to people falling down the white supremacy hole. Like I remember a specific king of the hill episode where Bobby was like "well Connie is connecting with her culture, what is my culture?" And almost got sucked in by the Klan or something and I think that was a perfect illustration of how that desire for culture can be abused to radicalize people.

It's probably the big reason why so many white people measure their heritage in percentages and desperately try to find a speck of any color but white in their genetics so they can be "interesting". They KNOW whiteness isn't a culture as much as the absence of it, so they try and find one they can appropriate. But blood quantum bullshit isn't culture either.

getting annoyed with the increasingly popular sentiment of 'if you're worried that you're engaging in a toxic behavior, don't be, because a toxic/manipulative/abusive person would never have that concern. they do it intentionally.' jesse what the fuck are you talking about. actually people who behave in toxic or manipulative ways don't tend to sit by themselves in dark rooms scheming about how to hurt people. generally speaking when people do things, it's because they think they're justified or necessary. yes even abusers! pretending being toxic/manipulative/abusive is a quality of some mysterious unfathomable other category of people who are Always Evil On Purpose doesn't help identify or discourage those behaviors, and it doesn't offer strategies for people to rectify their own unhealthy behaviors either. it just lets you feel good about yourself

if you're worried you're engaging in a toxic/manipulative behavior, talk to the person/people you think you might be hurting with this behavior and ask them if they feel the same, and then work together to correct the problem if there is one! communicate honestly and openly!!

The problem with this is it requires the other party to actually tell you, and a lot of people won't. Saying "please talk to me if I'm being hurtful or making you uncomfortable so I can correct my behavior" still requires they trust you enough to set those boundries in the first place. Some people will flat out lie even if you start picking up on something being wrong, and you only get confirmation of your suspicions when they ghost you.

Other people are not obligated to stick around and give you constructive criticism. Friends and therapists are not interchangeable, and that goes both ways. Part of why a lot of abusers just end up being validated in therapy is because the therapist isn't there to see how you're fucking up. So then you're stuck in this catch 22 situation where even if you sincerely want to do better and become less toxic, you have no idea what to do to fix the problem.

I think people really want to believe that being toxic is at least the majority of the time, a choice people make, or at least something easily corrected if they're recovery minded and seek help. Especially since a lot of people pick up bad behaviors for the sake of surviving abusive/toxic environments. But it's often a very hard thing to sort out, and most people would rather walk away than be part of your recovery team, and that's very valid no matter how bad it sucks.

have seen some post indicate that ambulatory wheelchair user just 'get up out of chair, step over/around obstacle if not accessible space' and this just... not correct for so many reasons.

lives of people who need chair 24/7 are different from people who need chair 23/6, know that. some amb chair user use chair much less, but must know some use more. important thing to know, in terms of spectrum of accessibility, support need. like people who use chair 24/7 also different from people who use thing like adaptive stroller, transport style chair bc have little/no ability to move self at all, not even with powerchair. important to know.

definition of amb wc important for medical staff bc 1) walking, even with much support and only little, good for body. just facts. 2) if emergency may be easier to get person out (but in case of certain crutch user, gait trainer, walker, etc this not the case). 3) medical community does want view everyone as able as possible. some things on list valid others less, but be amb wc user not any kind of gotcha on valid of mobility issue.

further consider, many amb wheelchair user use mobility aid outside of chair. consider these things are not just cane but also; crutches, rollators, gait trainers, walkers. 'ambulatory' not mean walk perfect or walk unaided. personal when use chair, not possible to even bring crutches along, cannot imagine someone packing on rollator! and even then, if use something like walker or gait trainer, unlikely ambulatory person able to get up steps on own.

ambulatory wc user mean, 'can stand and walk' but that it. seen someone use gait trainer in real life? come back, tell me how they just 'get up and move' to solve accessibility issue, that they not able to talk about inaccessibility.

have seen recent generalization as if all amb wc user have ability walk as typical person, or have in mind imagine amb wc user need chair sometime but 'basically abled' otherwise. get out of head. consider that some ambulatory people not ever walk without wheels or aid feet on the ground, and this still bar them from place not wheelchair accessible.

amb wc user not use for fun, not 'basically abled.' spectrum of ability. imply otherwise, sure, make people feel bad, invalid. but even more, make look like jerk and not know what talk about.

This is super important to recognize. And even the people who use wheelchairs who can stand up and move past the inaccessibility still might not even be able to do that depending on the day. I know of some people who can do just that one day but the next can't stand up without passing out.

For me personally, I can use crutches and kafos to get into some inaccessible places, I can do this every now and then but doing so will always cause more pain and I am much more of a fall risk. I personally want to be able to build up to use them more often and for longer but it's not often realistic and I use my wheelchair 99.5% of the time. I'm not paralyzed but if I want to go up steps without having crutches and kafos, I have to bump up on my butt which I'll do in a pinch, but again, isn't the safest, can also increase pain, and honestly can feel downright embarrassing.

Just...make the world accessible to wheelchair users, all types. And if you're abled bodied stop blocking access and call other abled bodied folk out who do so.

I was pretty much the higher end of ambulatory when using my chair (could unload it from the OPPOSITE side of the car, could physically lift the chair up a curb or step) but I still wouldn't resort to that if there was any other choice, because it's such an obnoxious option. Just GETTING IT IN THE CAR in the first place was bad enough I had multiple people driving me places refuse to deal with it until I asserted I literally could not go wherever they were taking me otherwise. Even people with zero impairment will refuse to put up with it. Even as someone whose main use was fatigue/inability to stand for long periods vs stuff like strength and balance, if I brought my chair, I was not going to be getting out of it. If I knew ahead of time that I'd have to deal with having to get out and move the chair repeatedly, I'd usually just stay home if it was an option.

What I'm trying to say is, if someone could just choose to walk, no matter how well they can do it, they probably wouldn't bring the chair in the first place. If you can only intermittently use it due to lack of accessibility, it becomes more of a burden to have to move yourself AND it around the inaccessible space than if you used a different mobility aid, or full on take the hit of trying to walk. It is absolutely a privilege to be able to get out and move when it's that or be stranded, but there's a reason I don't bother using the chair anymore even when I objectively would be better off doing so.

I really think we need to be having conversations more often about how to figure out if you're being abusive, and how to address it if you are.

Abuse isn't just done by one demographic, or in one specific way. Most abusers justify their actions to themselves and do not think of what is happening as abuse.

It's dangerous to just assume that you don't have the ability to abuse someone due to your Pureness of Heart or oppressed status. Thinking this way can make you more likely to harm someone.

I have known people who talk a lot about abuse, have read a lot about it, and have been abused themselves, who become abusers and don't notice because they see their victim status as overriding any concern they should have about how they treat others. It seems impossible to them that abuse could come FROM them rather than always automatically only happening TO them.

You can abuse people. I can abuse people. Abusers are human beings who choose to exert control over others. Not storybook monsters you have nothing in common with.

Let's talk about how to make sure we keep our friends, loved ones, and other community members safe from harmful behavior, not just from Total Irredeemable Obvious Monsters.

Also like... obviously, victims owe abusers nothing, but it is really frustrating how many people talk a big game with regards to recovery and self-improvement, but never give actual feedback that could help people improve their behavior?

"Go to therapy" gets thrown around, but your therapist is not your friend. They do get an objective look at how you treat your loved ones. Their perspective is limited to what you can tell them and your bias point of view. Even if you go into it KNOWING you're fucking up and being motivated, they aren't gonna be able to help you if neither of you know what to fix! If you're well into life and are experiencing a pattern of bad social breakups where the other people are walking away hating you, and you don't know what you did to hurt them, you know you must be doing something wrong, but the best your therapist is going to be able to do is guess.

No one really acknowledges that there's a recovery midpoint where someone is trying to be better, but is having mixed success with it still. Or that the other side of "you don't owe abusers anything, if it sucks hit the bricks" is leaving them with nothing to work with a therapist on. Without knowing what you're doing wrong, the only option that definitely will stop you from hurting people is self isolation. That's not recovery, it's giving up, and way too many "pro-recovery" people seem to quietly have that expectation.

sorry, any disability movement that tries to have me say that I DON’T have deficits or that I’m NOT defective will always end badly. endlessly trying to reframe disabled traits as superpowers will only ever exclude the most vulnerable. it will only ever shove aside other disabled people in an attempt to normalise the limited symptoms that CAN be reframed as “benefits”. and that’s not a movement I can prescribe to

100% this!

If you want to use that to describe yourself then that’s okay. I’m glad that it can make some people feel better about themselves. But don’t apply it to the disability community as a whole.

I can’t walk up a flight of stairs without being tired. I’m sitting on the couch doing nothing,, and I’m in immense pain. I have motor tics that make my body move against my will. That is NOT normal. There IS something wrong with my body. It shouldn’t function that way. There is no benefit to ANYONE to have a body that functions like this.

I also feel similarly when people try to include mental illness under the neurodivergent umbrella. I’ve heard one person explain it as doing this so people don’t feel broken or disordered because of their mental illness.

But having depression or anxiety or horrific intrusive thoughts that trigger illogical, repetitive actions in order to mitigate the anxiety caused by these awful thoughts (this is referring to OCD at least how I experience it) is. NOT. Normal! It is not okay! It does no one any good to suffer like this!

There are many disabilities out there that are mostly caused by societal factors especially those in the neurodivergent spectrum. These types of things may mostly have a negative impact on people simply because of stigma, lack of awareness or education, or simply because they are in the minority and therefore the world is not built to accommodate them properly. However…

This is not true of all disabilities many disabilities cause issues, even deficits, that hinder people no matter what. There may be accommodations that can be made to improve their lives, but society changing could not entirely fix it.

People with the same disabilities will have different experiences. Some will have more issues with the societal factors of their disability that hinder them and some will be more affected by other factors.

Ex: Many neurodivergent people have issues with sensory overload especially autistic people. That is something that if neurotypical weren’t the majority would likely make life easier and more accessible to many neurodivergent people. We’d likely have public places with dimmer lights, quieter music, etc.

But that wouldn’t fix all the problems neurodivergent people face. Different people have different levels of sensory sensitivity, what might be enough of an adjustment to accommodate most neurodivergent people may not work for all neurodivergent people. And there are other symptoms like issues with communication. Different forms of communication can be helpful, but some neurodivergent people may have different preferred communication forms and be unable to talk to each other because of it. And this doesn’t fix everything either! Some people still struggle to communicate. Even with accessible technology it’s still hard for some. And that’s okay. But there’s not an easy society-wide way to fix that. It takes individual assessment of each person’s struggles to accommodate for that. It is okay that they’re bad at communicating. As a society, we should be accepting, we should encourage and make accessible alternative forms of communication. But even if we do everything we can it will not always “fix” that. And that’s okay.

To accept disability, we need to accept that not everything can be “fixed.” No matter the circumstances.

I don't disagree with most of what you wrote, but I feel like it needs to be clarified again that the the word neurodivergent was explicitly coined to be inclusive of literally any divergence from typical neurology which includes not only mental illness but conditions like epilepsy and chiari malformation. Saying otherwise is gatekeeping and actively undermining the intent of the identity.

A lot of people (mostly ones who have autism/adhd, but I've seen the opposite and seen people say it's only mental illness and doesn't include intellectual or developmental disability instead) seem to be trying to redefine it, but the original intent for the person who came up with it was to make an all inclusive word that covered all their neurological disabilities, some of which being not mental at all.

Maybe the word itself kinda sounds like something with intent similar to "differently abled" or at least tied into the social model of disability, and it's not explicitly stated in that post I linked, but I think it would be absolutely bonkers to claim that it's a word intended for only people who don't want to be "fixed" given their list of diagnoses. Like yeah, autism is the first on the list but everything else they list are examples of things that are all impairment with no upside. Some people might argue they got something positive from PTSD, but they'd very much be in the minority, and the other three things there's no argument for at all.

Recently, after reading my friend @metalheadsforblacklivesmatter ‘s posts, I thought it was finally time to share my own story experiencing medical racism, transphobia and sexism.

TW: MEDICAL TOPICS, RACISM, TRANSPHOBIA, SEXISM AND EDS.

Somethings about me and disclaimers:

For those who don’t know me, hi hello, what’s the dealio? My name is Kuco, I’m a two-spirit black-indigenous mixed person. I am light-skinned, but most people can tell I’m mixed or assume I’m Latino, to the point where my medical documents mark me as Hispanic despite myself telling them to change it. I’m also AFAB.

While my experience is bad, it’s not unique to just me. Other people who are apart of the BIPOC community have faced the same or much worse. Regardless, please listen those in the community with darker skin. They often face much worse. If you’re only comfortable listening to those with lighter skin and feel more comfortable while claiming you’re an ally, you’re wrong and need to do better.

My story:

In 2021, I was experiencing nausea and vomiting after I ate. After a week of this continuously happening while working, I went to see a doctor who sent me to a surgeon, who sent me to a gastroenterologist to see what could be done without surgery.

This doctor was a cis white man in his late 60s who was apparently “retired.” After pointing out my symptoms and how they were getting worse, he looked through my medical history and noticed I had anxiety. He immediately went to the conclusion of a “brain-to-gut” connection, saying it was often found in woman. (Shock to no one, that wasn’t the case. Also, the issue was not my anxiety. My anxiety has progressive gone down and was at the lowest it had been in YEARS. My therapist at the time even confirmed this himself.) During this time, he also repeatedly referred to me using she/her pronouns, despite that my medical record points out that I am transgender and went by he/him pronouns at the time. (Despite me pointing this out, he continued to ignore this.) He gave me medications that were supposed to help, a doctor’s note (as I worked at the time) and sent me on my way.

Things only got worse. After 6 months of my symptoms getting worse and worse (to the point I could not eat solid food and started vomiting liquid) and several tests, he still believed it was a brain to gut issue. I had lost a lot of weight, to the point my own family noticed.

One of the last appointments I had with this doctor involved what’s called a gastric emptying test. For this test, a radioactive isotope (which isn’t harmful to humans) is put into some eggs and ingested. Pictures are taken of your stomach to track how long the isotope stays in your stomach after 2 hours, 3 hours, and 4 hours. Normally, your stomach is meant to empty at the 2 1/2 to 3 1/2 hour mark. (By what I was told, mind you.)

My stomach emptied finally at the ladder end of 4 hours. This was considered on the way lower end of normal.

Once my doctor got this result, this was his response: The test says that your empty is at the lower end of what was normal, so that’s normal. Just keep taking your meds. It’s more common for Caucasian (white) people to have more serious gastric problems. Just so you know, I’m not writing you another note for your work, it’s not what I do.

This is what broke the camel’s back.

I called my primary care doctor and let her know that I wanted a different doctor who was a woman to see. I told her that he wasn’t listening to me nor taking me seriously and I refused to see him again. I also let her know that he was refusing to write me anymore work notes, despite the issue not being resolved. (A small time after this, my job let me go due to not having a return date. They said I was allowed to reapply afterwards, but I didn’t for different reasons. That’s another story for a different day.)

My primary care doctor sent me to a different doctor who was a woman and also happened to be a POC.

I had an appointment a week later, in which I told her all my symptoms and how I was barely able to eat it drink anything without being nauseous and vomiting. She listened to me while looking at my previous results from previous tests, in which she saw my gastric emptying test.

Her response was: Your test says your emptying is on the lower end of what’s normal, but by what you’re saying, it’s only gotten worse. Why didn’t he give you anything? I’m surprised you’re even talking to me right now.

I told her that he had said that due to my anxiety, it was a brain to gut issue, which was common for “woman” and continually insisted on that, as well as his other comments. She concluded I have a condition called Gastroparesis, or delayed gastric emptying. This is a condition that affects the stomach muscles and prevents proper stomach emptying. While there isn’t a certain idea of why it happens, it’s thought that those who previously suffered from EDs and have diabetes contract it more. (I had suffered from EDs when I was younger and have a history of diabetes that runs in my family, which is where I believe my causes came from.)

I suffered 9 months with this condition without proper treatment, in which my symptoms were prolonged, got worse, and almost passed, all because if ONE doctor.

While I got better for a time, I’m still battling with this condition, as well as other conditions that came along.

~~~~~~~~~

When those in the BIPOC community tell you we don’t trust white people, especially doctors, it’s because we’ve been shown time and time again the complete disregard for our care and safety.

Use your allyship for good and protect us.

I would like to thank my friends for your help, but especially with my partners and my friend @metalheadsforblacklivesmatter . They helped me so much through those 9 months, and even now continue to help and support me. I love you guys so so much. 🩵🩵🩵

Something also worth mentioning here from someone else with gastric emptying issues who got the same treatment?

Benzo anxiety meds make it worse.

So a lot of the time they're literally blowing off the actual issue in favor of throwing meds that exasperate the problem at you.

If you are ever thinking of an autistic person and say to yourself "I never really have to make any/many accomodations for them."

Yeah.

That is because WE are the ones making the accomodations for YOU.

You always hear about how we need all this support and patience but no one ever talks about the sacrafices ASD people make for he NTs in our lives that they never even see or know about.

Oh, you think I am "well spoken?" Thats cuz i spent a ridiculous amount of time rehearsing my lines and facial expressions to make sure they meet your liking.

I don't seem to have any sensory issues? My guy, i have nerve damage from raw dogging the pain. You ever watch a lactose intolerant person eat dairy? They aint gonna shit their pants in front of you. You dont have to follow them into he bathroom to believe them.

Oh you mean you dont remember me ever having a meltdown? I locked myself on the bathroom to have my "temper tantrums" in private since i was 5 years old.

You think I dont stim? Let me roll up my sleeves and show you the gashes and scars from clawing myself under my shirt. The inside of my mouth looks like a crime scene. I can taste the blood. You cant. I would much rather be "squirming" or wearing very strong perfume but i know that bothers people so i find another way.

You think i am "smart?" Yeah i might be, but that is because i am constantly using my problem solving skills to quietly and covertly solve problems i am not "supposed" to have. Problems that would never even occur to you. Problems you would never even know about because i am fucking terrified of what people would say if they knew it takes me 3 hours to get dressed and shower sometimes.

I have given myself perminant nerve damage just because i was afraid to make other people even a little uncomfy.

You understand body language because it comes naturally to you.

I understand body language because it comes naturally to you.

We are not the same.

Wow. This was a fantastic read. I think Lizzie McCord & Attlee Hall's "memory foaming" metaphor describes a psychological experience common to Autistics far better than "people pleasing", "codependency" or even "fawning" ever did.

Imagine a world where homosexuality was still in the DSM but society had moved gradually toward some moderate acceptance of queer people, but only with the understanding that we are sick and that leading out our queer lives is medically necessary for us. in this paradigm, a person would have to get diagnosed with homosexuality by a psychiatrist in order to be permitted to have gay sex

this is basically the reality that trans people are living in right now. and that's for those of us that are lucky enough to live in a place where we *are* allowed to lead out trans lives once we get gender dysphoria written down in our medical charts

#for ppl curious about the alternative:#so doctors in most places have an authoritative role. you have to proove youre trans and then they ALLOW you treatment.#but it doesnt have to be that way. im an upper middle class person in a major and very accepting canadian city.#my dr and i are basically PARTNERS in my healthcare. i can go in and say hey im having weird pain i want to see an obgyn.#and she's just like okay cool ill put you on the list to see one.#if i wanted to i could walk in or make an appointment rn and see her and ask for testosterone and she would#basically ask me if i know the risks etc and the process. id say yes (cause i do). and id start the process to receive T (u need blood#tests first) within a couple days.#but in more transphobic places or with shitty doctors that feel they have authority over you it doesnt work that way.#eg ive had psychiatrists where it wasnt like i walked in and they were like oh damn okay ur sick.#i had to work to PROOVE i was sick. (and one time got yelled at it sucks).#but i was eventually partnered with a psych who took a collaborative approach to medicine.#there are also ppl who argue it could be entirely OTC. like.. we have everyday access to dangerous drugs. if i wanted to rn i could#destroy my liver with 2 extra strength bottles of tylenol. in many places there r highly addictive drugs in cough syrup.#they sell bandage kits and stitching supplies.#people are ALREADY trusted to take care of their own healthcare to a point its not completely wild to make HRT otc or behind the counter#at the pharmacy.#i dont personally agree with hrt being that easily available bc a lot of people dont put the work into researching it#(not bc they are flippant. but bc they dont understand how 2 research or have the time/energy 2 to rserch.) so its better imo to keep it#at least behind the counter at the pharmacy

Thank you for adding! We gotta stop leaving such gold in the tags now that tumblr makes them hard to see! lots of people should read this addition.

People are saying in the notes that gatekeeping drugs is necessary for safety reasons but like, even with just the specific example of hormones, I was on birth control for endometriosis and one of my drs knowingly rxd me another drug known to interact with and subsequently cancel the former out without warning me. I ended up in the ER with 60/40 blood pressure from it. I called them up after and they told me they knew it could happen and told me it'd probably go away if I kept taking the drug!

It's like the argument that we need cops to protect us when it's proven repeatedly they don't actually do that. You can still have some level of controlled substance protection with non-rx drugs obtained through pharmacies (ex: stuff like pseudoephedrine and requiring a medical license for some weed products). Requiring approval just puts in a chance for personal bias of medical professionals to sabotage people's care.

Today my therapist introduced me to a concept surrounding disability that she called "hlep".

Which is when you - in this case, you are a disabled person - ask someone for help ("I can't drink almond milk so can you get me some whole milk?", or "Please call Donna and ask her to pick up the car for me."), and they say yes, and then they do something that is not what you ask for but is what they think you should have asked for ("I know you said you wanted whole, but I got you skim milk because it's better for you!", "I didn't want to ruin Donna's day by asking her that, so I spent your money on an expensive towing service!") And then if you get annoyed at them for ignoring what you actually asked for - and often it has already happened repeatedly - they get angry because they "were just helping you! You should be grateful!!"

And my therapist pointed out that this is not "help", it's "hlep".

Sure, it looks like help; it kind of sounds like help too; and if it was adjusted just a little bit, it could be help. But it's not help. It's hlep.

At its best, it is patronizing and makes a person feel unvalued and un-listened-to. Always, it helps reinforce the false idea that disabled people can't be trusted with our own care. And at its worst, it results in disabled people losing our freedom and control over our lives, and also being unable to actually access what we need to survive.

So please, when a disabled person asks you for help on something, don't be a hleper, be a helper! In other words: they know better than you what they need, and the best way you can honor the trust they've put in you is to believe that!

Also, I want to be very clear that the "getting angry at a disabled person's attempts to point out harmful behavior" part of this makes the whole thing WAY worse. Like it'd be one thing if my roommate bought me some passive-aggressive skim milk, but then they heard what I had to say, and they apologized and did better in the future - our relationship could bounce back from that. But it is very much another thing to have a crying shouting match with someone who is furious at you for saying something they did was ableist. Like, Christ, Jessica, remind me to never ask for your support ever again! You make me feel like if I asked you to call 911, you'd order a pizza because you know I'll feel better once I eat something!!

Also sometimes you didn't even ask.

Like my mom offered to drive me to the doctor's office then sprung on me during the trip there that I'd have to call to be picked up, even though it was going to be fairly short of an appointment. The timing would have put that at rush hour and the appointment was in Boston, which would turn a 15 min wait time to an hour. She didn't feel like dealing with parking.

She gets mad when I say that's a terrible plan and complains about her convince. I didn't ask her to do it. I actively hate having to be driven places by default! So I told her not to bother coming to get me and took the subway home.

The thing is, I couldn't have done that a year or so earlier, because I would have struggled to get to the subway station. I could however, if given notice she was planning that, just driven myself and dealt with parking (my FAR more sensibly sized) car myself. But the choice was taken away from me and somehow I was the bad guy for not just going along with it.

society if people understood that defending transition care on the basis of "improving mental health" is still not a commitment to full unfettered bodily autonomy, and in fact makes philosophical assumptions that explicitly restrict autonomy by making it contingent on normative biomedical judgments of health and best interest

Mods asleep post My New Vagina Won’t Make Me Happy

i’ve said before that phalloplasty doesn’t fix all ur problem but rather it gives you a new set of problems that you may be more open to dealing with.

literally…. the idea of the “perfect penis” that will solve all ur problems & fix everything for you - insecurity, dating trouble, etc - is unrealistic!!!! what it does give you is a different set of genitals & penis problems (ex: how to accommodate a dick in underwear/pants)

getting bottom surgery is fundamentally about the surgery recipient and their personal embodiment!!! it’s a bodily autonomy issue!

everyone deserves bodily autonomy. medical professionals claim authority over the bodies of sick and disabled people as well, just as illegitimately and causing just as much harm. and disabled/sick trans people are especially subject to this, particularly if we are also marginalized in other ways (such as racialization).

to put it more simply, sick and disabled trans people are often denied trans related care because we are disabled/sick, and often denied the other medical care we need because we are trans.

Honestly a frustrating thing is how often medical gatekeep for various treatment will get attributed to transphobia, racism, sexism, fatphobia etc as individual discriminatory practices, but people don't take that extra step back and notice that if an institution gatekeeps bodily autonomy around something ass essential as access to health care maybe it's more a problem inherent to the institution itself than just individual bad actors with their own bigotry and biases. Like you might recognize this problem as the same one as law enforcement (which also, doctors ARE sometimes part of themselves anyway).

The question that should be asked, regardless of who is dying from this shit, is why does access to medical care require a gatekeeper past an advisement role warning you of the pros and cons of various options? Why is denying or forcing someones treatment "for their own good" acceptable in the first place? It's frustrating when you're multiple of the things that this happens with, the only time you know which thing is causing the discrimination is when they bluntly just state it to your face, because they can get away with doing that without consequence.

Anybody should be allowed to do whatever with their own damn bodies as long as they have been given informed consent of the potential price. But instead we just have a paternalistic system like this where you need to jump through hoops to prove you really want and need the intervention, while often not actually being given the informed consent at all, and somehow any consequences of that are still not on the authority figure for whom that is the justification of their entire existence.

"Walkable city" is not "City where to have to walk everywhere."

"Walkable city" is.

People get so caught up in the "Walkable" part of the term and like to spout "Walkable cities are abelist because not everyone can walk".

Bitch. The modern city structure is abelist because not everyone can drive. And classist because not everyone can afford a car and it's pretty damn impossible to get a job if you don't have a car.

Walkable cities are cities where people can reasonably get from pointA to pointB without requiring a motor vehicle.

"But fae. Disabled people have issues using the paths in modern cities." Bitch abled people can barely use the paths in modern cities. That's kind of the fucking problem.

Also walkable cities have fucking benches. Not only for disabled people. But sometimes you just twist your ankle and need to sit for a moment.

"Put fae. If you have benches, homeless people will sleep on them."

Then get fucking housing for the homeless. Problem solved. They'll sleep in their nice warm homes instead of on the benches.

-fae

Mostly agreed but i also wanna bring up these important points from the replies:

[thanakite: It's my understanding that the reason people are labeling 'walkable cities' ableist is because the ones that are currently being built or are already aren't built with these kinds of features in mind, but I could be wrong (shrug)]

[alysharaa: this is one hundred percent the reason. The existing walkable cities exclude disabled people.]

A really annoying trend/common mindset with disability inclusion is that it's focused on lip service and the wording of things, when objection to wording in reality it's like... Having gynecology labled "women's health" and trying to access care while not actually a woman.

Using "walkable" to describe pedestrian friendly city plans might not be automatic exclusive, but it means that disabled people cannot assume inclusion by default. If you want to use the word walkable instead of idk, "pedestrian friendly", you need to accept the burden of providing the specific details on a case by case basis so people can feel confident they're actually going to be included. "Trust me bro" isn't good enough when as stated, the cities often held up as the supposed goal usually aren't actually accessible. People aren't even picking on walkable cities in particular, it's just that accessibility is such a massive afterthought that I've literally had to leaving parking lots/garages at hospitals via a ramp intended for cars. If that's how things are in a world that people will circle a parking lot like a dozen times to avoid walking another dozen meters, is it surprising people would be sceptical?

The fact (usually non-disabled) bad actors will use the existence of mobility impaired disabled people as an argument against walkable cities is easily overcome by just including them in your planning and posts/general discussions. As long as you're doing that you can safely ignore that gotcha. But "people are just pissed at the wording" is also a favorite deflection of valid criticism, and saying that without acknowledging that plenty of people are sincerely being exclusionary, is not going to be any more reassuring than "terfs aren't REAL feminists".

i didn't actually get better medical care when i was thin, which is not to say medical fatphobia isn't real, only that medical gaslighting, abuse, and neglect can happen regardless.

the difference now is they will explicitly state that it is because of my body shape that they deny me care or try to coerce me into organ amputation instead of access to nutrition.

the difference now is i know that when they see my body, they think they know that i am lazy, i eat too much, and am knowingly causing my own health problems through poor choices that could be prevented if they 'educate' me.

even though i already had these health problems when i was skinny. even though im fat BECAUSE of these health problems, and the medications used to treat them*. even though i am literally starving, they think what i need is less food. they think that changing my body shape should be the priority above all else, including survival.

*note: shouldn't matter why i'm fat, just highlighting the irony.

the sheer number of people replying positively to the idea of fucking supermarket security having free reign to execute you for shoplifting is insane i mean neurodivergent

the murder victim was a Black trans man named Banko Brown who was a community organizer with the Young Women’s Freedom Center since the age of 12. he’d been struggling with housing insecurity and still devoting all his time to helping his community for about a decade. he died just trying to survive this fucked up system. here is the gofundme set up by loved ones for his funeral services if anyone is able to contribute, it’s still about $5k off

Not to derail, but I cannot get over the OP correcting "insane" to "neurodivergent" to explicitly confirm they meant it in the slur way and not the saying it without thinking of the implications, when we literally just had a black homeless man strangled to death for existing while mentally ill on a train.

Congratulations on being actively complicit in validating everyone cheering on that murder because they think violence is a mental illness issue and found the guy being loud more upsetting than being on a train with a guy who'd casually murder someone