Have you ever thought things like “I’m not REALLY disabled” or “I won’t let my disability/illness stop me”? If so, this video might be for you.
…and with that, I have just finished my first YouTube series! ✨
It’sa series of 4 speedpaint videos discussing internalised ableism. They can be watched in any order, this is the last and newest one.
In these videos I delve into the various ways in which disabled and chronically ill people turn ableism inwards, often without realising.
I do so with the help of Internalised Ableism Bingo, an unexpectedly useful meme that gave me some incredible insights. The final concept I want to explore is “disidentifying”: rejecting the reality of being disabled in society.
I put a lot of work into this series, and I hope that it can help other people understand the ways in which ableism impacts them. I would love it if you checked it out and let me know your thoughts.
just neurodivergent things: not being able to tell if you’re dealing with your symptoms better now or if you just never actually had them in the first place.
just neurodivergent things: when you realize that you’ve actually been suppressing an awful lot of how you actually experience the world because you learned to base your patterns of thought off the descriptions of the way characters in books think.
One of the worst things about chronic illness is how it changes your relationships.
Because you’re so tired, it’s hard to regulate your emotions. You might snap at your loved ones, or lean on them for emotional support too heavily.
You might worry about asking your loved ones for too much help. Even if you have very supportive family and friends, internalized ableism can make you feel that you’re a burden on them.
Worst of all, chronic illness can cause the people who don’t understand it to say very hurtful things to you or even walk out of your life entirely.
It’s extremely hard to cope with the changes that chronic illness brings to your body while coping with the changes it brings to your relationships and your life.
One reason I started writing this blog is that I got tired of seeing social skills programs teach autistic people that they have to become normal in order to have friends.
It’s not true. There are a lot of autistic people who have friends without becoming remotely normal. Oddness and friendship are entirely compatible.
You can be autistic, seem autistic, and have friends who like you and enjoy your company.
Some people won’t like you, and that’s ok. Not everyone has to like everyone.
Some people will dislike you because they are bigoted against autistic people. That’s not ok, but it doesn’t have to ruin your life. Ableists don’t speak for everyone. Those people aren’t your friends. Other people can be.
You’ll probably always face ableism. Trying to be normal probably won’t make that go away; accepting yourself probably won’t make that go away either. You don’t need to change the whole world in order to have friends.
You can have friends as the person you are, in the world as it is now.
I don’t know who needs to hear this, but reminder that you didn’t choose to play life on hard mode. You didn’t choose for “simple” or “small” things to be so excruciating or overwhelming to you: No one would choose that. You are doing what you can, all while bearing a tremendous burden on your back. You are so strong, and I’m proud of you for making it this far.
Wow, I knew I was affected to it but not to this extent. Having it pointed out to me really makes me realise the impact internalised ableism has on my life. This is definitely something I need to look into.
Imagine a world where medical diagnostics specialists and disability services assessors were advocates instead of gatekeepers. Imagine their target being to make sure nobody who needs help slips through the cracks and doesn’t get it, rather than to make sure nobody who’s trying to “scam the system” slips through the cracks and does.
Scammers affect real disabled/sick people by taking resources from them. Also, many known fakers that have munchausen by proxy/attention seekers can get money from donation’s to pay for medical bills they don’t even have. They get trips to disney and expensive shit from make-a-wish and sympathy.
If every person isn’t checked when they claim they need disability assistence those that fake it have a easier time because they have “proof” and people will keep throwing money at them and wasting resources from real sick people.
You’re missing my point. My whole point was that even if there ARE people out there “faking” (which is way more rare than people seem to think it is - usually what’s perceived as a person faking is just a person whose disability you don’t understand), it would be better that those people are accidentally given resources they’re not entitled to than that any actual disabled person need those resources and not be able to get them. Proving your disability to the satisfaction of officials whose job is to try to keep people out unless they successfully jump through all the hoops would be a hard thing for most people to do, but it’s especially hard when *being* disabled in itself makes it harder to do all the running around necessary to gather what’s asked for. Because under the current model, the people in charge are not making it their objective to make sure every disabled person gets the help they need. They are focused instead on making people prove they are “disabled enough,” and a big part of that is not listening to people’s lived experiences, treating their word on their own bodies and lives like it’s worthless. Most of what we’re trying to get isn’t any kind of luxury, it’s boring necessities that we need just to survive and navigate the world but we still have to spend energy we don’t have appealing to agencies that make a point of denying people just to see if they “need it enough to fight for it,” and if you’re too sick to fight, you fall through the cracks. There’s something wrong with a system built on disbelieving disabled people as the default.
(Also, Munchausen’s is a real and serious mental illness in which people physically make themselves - or others, in the case of by proxy - sick, and those people need help. It’s not a word for “person on the Internet pretending to be sick” like people think it is.)
They aren’t focused on making people prove they are “disabled enough”. They are making sure people are not faking or asking for benefits for a mild illness or deficiency. If you worked as a builder and lost your leg you would need help since you wouldn’t be able to work as a builder anymore. If you lost a finger you can still work with many different jobs.
People with fibromyalgia for example don’t *usually* as far as i’m aware are eligible to benefits because it’s a illness that is not able to be proved through tests and is only symptom reported by the patient. So it’s very easy to fake it. Fibro isn’t a illness by itself, it is caused by something and if the cause is not found it is categorized as fibromyalgia. It could be something as simple as severe vitamin D deficiency for example that is fixable - so it isn’t something deserving of life long benefits.
I receive benefits because I have severe health issues - if you were rejected, chances are you don’t really need it. There are rare cases that people that need are rejected but this is far from being a common occurrence.
Yes, Munchausen’s is a mental illness but nobody should receive benefits for making themselves sick (or others). They need help, but if they commit fraud or injury other people they need to be responsable for their actions. Mental illness is not a excuse unless what you have is so severe you’re considered insane, which isn’t the case in Munchausen’s patients.
Fibromyalgia is actually a really good example, because it is a real and often debilitating illness that, yes, you can’t “prove,” it relies on doctors listening to and believing patients. There are several other chronic illnesses that are the same way, and many that now CAN be proven with tests but at one point couldn’t. The fact is that medicine is always evolving and things that are diagnosed clinically now might eventually be found to have markers that can be tested for if they develop the right test. That doesn’t mean that the people who have them now, when those tests don’t exist, should suffer.
I’m a disability activist so I don’t speak just for myself, I try to advocate for all disabled people. So please don’t assume that when I make posts like this I am complaining about my own experience. This isn’t sour grapes because an agency rejected me; this is a systemic problem that I can see where we function under a gatekeeping model rather than an advocacy one and I believe that’s the wrong tactic. You’re not going to change my mind about that.
I see a lot of ableism on your page, and yes disabled people CAN be ableist. I have multiple lifelong disabilities and also some recent health problems that have made things worse for me, and I do get help from a lot of places, but I also see people who need help turned away and I have a problem with that so I’m going to speak out about wherever I see it.
Hey, I have a problem. I’m transgender and I used to bind my chest in some less-than-healthy ways. This caused severe chest pain and shortness of breath, that I still experience now even though I haven’t bound in years. I’ve seen a doctor about it, and went to the ER over it a year or two later, and I have another appointment scheduled in a couple months. So far, nobody has given me a way to treat it, or even a solid diagnosis. I’ve been told it looks similar to costochondritis but that’s it, nothing more specific.
My questions are:
How do I find a way to possibly get an actual diagnosis?
If it’s actually not something we have a name for, how do I treat it?
How do I convince myself it’s okay to call myself disabled even though I don’t have a diagnosis, not even a self-dx
Thank you!
Oh, that sounds very sucky, and doctors are really terrible about more niche chronic conditions. I’m so sorry you’re dealing with this!
I’m afraid I don’t have specific advice about this issue, but I’m hoping our readers do. Does anyone have experiences to share?
Some more general advice from my experience, under the cut:
How do I find a way to possibly get an actual diagnosis?
If you haven’t looked for doctors who specifically work with trans clients, that would be a good start.
If you haven’t already done so, join some trans groups online and ask around. The best way to find your diagnosis when the doctors are sitting on their hands is to see what other patients have been diagnosed with.
If it’s actually not something we have a name for, how do I treat it?
That’s a tricky one. Although you can’t get to what’s perhaps the core of the issue, you can still use band-aids. That might be things like painkillers, heat/ice… not sure what to do about the shortness of breath, but there may be general remedies out there. I think there’s some empowerment to be had when you make a point of listening to your body and learning what you can do for yourself.
How do I convince myself it’s okay to call myself disabled even though I don’t have a diagnosis, not even a self-dx
Get back to basics! What does the word disabled mean? It means something has caused you to be unable to do something. From a functional and linguistic perspective, it sounds like your condition has disabled you. So yes, of course you can use capital-D disabled!
People go their whole lives with mystery, undiagnosed illnesses. They’re still disabled!
Seriously, try not to let weird internet gatekeeping overshadow these really obvious truths. I know it’s really hard, and I’m definitely not shaming you for it.
A piece of advice to anyone who’s been considering, avoiding thinking about, or waffling on:
Get the fucking cane.
I am very serious. Get the cane, get the assistive device (I’m going with cane here, because simplicity, but the device you’re thinking about goes here), do it. If you’re thinking “damn, if these Symptoms get much worse, I’m gonna need to get a cane”, you already need the cane. You’ve probably been in a state that would be improved by it for a while.
I get it, though. I had other disabilities, including physical ones, prior to Getting A Cane, and I heard this advice from other people and I thought “okay, but my situation is not that bad, and I’m sure I’ll know when it’s really bad” as I lay awake half the night in pain because of a short little walk that afternoon. It turns out, I am not immune to internalized ableism either, like I’m a person in an ableist society or something.
I thought “this is gonna be a hassle, and they cost money, and people will be weird about it”, and learning to use it did take a minute, thankfully mine was pretty cheap, and yeah, some people are weird but most importantly: fuck ‘em, I did in fact need the cane. I can do a lot more now, and probably could have prevented some damage if I’d gotten it earlier and it looks cool.
Stop putting it off. Stop worrying about unpleasant people being unpleasant. You don’t have to suffer at the highest pain/difficulty/etc to be allowed to get the cane, you’re allowed to get it now. If you only need it sometimes, that’s okay.
That schizotypal/borderline feel when you read about someone else’s delusion/hallucination and suddenly your brain mimics it and you’re now Fake and Unreal and Not Really Sick Just Looking For Attention
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