disability-talk

[disability-talk]

I don't think healthy people realize how for chronically ill people getting a diagnosis isn't sad or even disappointing for us, it's a relief and a vindication. So many people with chronic illnesses take many years to get diagnosed, and are told that 'it's just anxiety/your period/psychological' or that we're exaggerating or that everyone experiences that, so for us getting a diagnosis is being told that we weren't faking it and that this wasn't normal and it's also finally knowing what exactly is going on in our bodies.

I think many healthy people think of it as if it were them being told they have this lifelong debilitating illness, and they would feel awful because they are going from perfectly healthy to disabled, but they don't fully realize that we already have all the symptoms and impacts of said chronic illness and that we are just finally finding out the name, and that knowing what it is means that we have access to more treatments and more knowledge as to what we can to do alleviate our symptoms.

[disability-talk]

"everyone should care about accessibility because most people will become disabled at some point in their life" is a logical argument and I understand its popularity

however, everyone should care about accessibility because disabled people are fellow human beings living in the same society as you who deserve the same rights as you

thank you good night

[disability-talk]

friendly reminder you dont need a diagnosis to be in disability spaces, as an example im in constant pain and fatigue, have migraines every week and my joints hurts to a point I can't write, but since familiar gaslighting/medical trauma and the fact that im an indigenous, brown skin fat man a diagnosis is fucking hard (but im in my way! :)) , but i still deserve a safe space to talk about my experiences and to feel valuable and supported.

never feel like youre interrupting someone's space or that you shouldn't be here cause you dont have a diagnosis, disabilities existed before diagnosis

[disability-talk]

"neurodivergent" means disabled. it means disabled in some way involving cognition/emotion/sociability/mental abilities. it is a call to solidarity between the person with adhd, the autistic person, the depressed person, the dyslexic person, the schizophrenic person, the ocd haver, the intellectually disabled person, the person with dementia, the epileptic person, the stroke survivor, anyone who has a mental disability. it's a call to each of us to be more than ourselves, to be in solidarity against the ableism that affects all of us.

it isn't a quirky fashion statement. it has always been about disability

[disability-talk]

It's not Aspergers

On why you shouldn’t use that term

Word count: 245 words

There still are people that use the term Aspergers and aren't aware where it comes from. Especially for those individuals, I want to explain what the origin is.

But first, what is "Asperger's"? Aspergers is now part of the Autism spectrum. Generally, it was considered some sort of "mild autism". Basically "you are sorta autistic but you can function in our opinion so it's 'just' Aspergers". Where that division stems from and why it's highly problematic is something I'll mention later in this entry.

The name origin stems fron Hans Asperger, who was a Nazi doctor that did horrible experiments on and with autistic children. So we're off to a bad start.

The division into autism and asperger's stems from that time as well.

Essentially, it seperates into those that are still useful for the Nazis (those get labelled with "asperger's"), and those that are "truly disabled" and are to be killed (those labelled with Autism).

But even medically it isn't really accurate. The autism spectrum isn't a line and people are "more autistic" or "less autistic". It's more a chart of indicidual difficultis with different things. People got diagnosed with asperger's when someone from outside deemed them not needing of support.

So the overview looks like this:

- medically inaccurate

- named after a Nazi

- division to decide who gets killed during the holocaust

I hope this was impressive enough. Thank you guys (gn) for reading

[disability-talk]

[disability-talk]

What to call disabled People

Word count: 327 words

Since we already talked about how you should say disabled yesterday, I now want to further talk about what to call disabled people/how to adress them.

I want to both discuss specific examples as well as the concept of person first language.

Things to not say include a few things, and this is by no means an exhaustive list.

- Don‘t say „the (name of group of people)“, like the disabled or the deaf. Rather say deaf people or disabled people.

- Saying „suffers from xyz“ isnt nice either. Just say has. Works just as well and doesn‘t paint something in a way.

- Don‘t use any of the slurs or slur-like words. You can just use the proper name for it.

- Also don‘t say dwarf or midget. Rather say person with dwarfism or little person.

- don‘t say someone is „confined to a wheelchair“. Just call them a wheelchair-user. For many people, using a wheelchair is a very freeing experience. It enables them to do things they otherwise couldn‘t. Painting this in a bad light can be seen as inconsiderate

These weren’t many, but maybe it helps you get a picture on how to think and reflect about the language you use.

Onto the second part. The concept of person first language. Putting the person first is supposed to underline how the disability is just an aspect of the person, and the person is so much more than that.

Examples are the previosly mentioned „person with dwarfism“, „person with cerebral palsy“ or „person with adhd“.

However, not all groups wish person first language to be used. A big part of the autistic community are an example for that. They say that being autistic is such an integral part of their being that it cannot be seperated from who they are as a person. So they often prefer saying „autistic“ or „autistic person“.

Overall, it‘s important to listen to the specific people when they tell you what they want to be adressed as.

[disability-talk]

To all of those who are, are thought of as, or are being pushed to be current full or part-time mouth speakers,

If (mouth) speech makes you tired,

if speech makes you have meltdowns,

if speech makes you shutdown,

if speech makes it so you don't know your own brain, your own thoughts,

if speech makes you feel like someone who isn't you takes over your mouth and says only a fraction of what you want, the wrong thing entirely, or rambling nonsense,

If being expected to create perfect verbal speech spontaneously at any time makes you want to scream and run away,

if a long day of being made to use speech makes your brain feel hollow, foggy, slow, or restless and angry,

If you find yourself avoiding situations where you know you will have to speak, even to extreme consequence,

If speech comes out "wrong",

If speech causes sensory overwhelm, from the internal sounds or vibrations, or other reasons,

If speech happens so fast that your thoughts can't keep up,

If speech hijacks all the brain power from other, more important uses of your energy, like sensory processing, language skills, visual processing, and so much more, leaving you unable to do certain things in your life (or only able to do them poorly),

then you can stop.

You can use AAC (Augmentative and alternative communication, or as some advocates call it, augmentative and assistive/adaptive communication)

you can use writing on paper or whiteboards, dedicated text-to-speech or symbol-based AAC apps, pointing to letters symbols or pictures, communication cards, email, texting and messaging apps, gestures, pointing to objects, non-speech vocalizations, and so many other ways I couldn't even list them all! !

You can learn a different communication style!

Maybe one that uses a bit less verbal speech.

Maybe one that uses very little verbal speech.

Maybe one that uses none, or very close to none, at all.

It may not be safe to, or those around you may not understand or deny you the right to the best possible communication method for your brain and life, but you still deserve it. You are not wrong for being you. You have the right to be who you are. I hope that someday, you can be.

You don't need permission from anyone, and you aren't stealing anything, taking something that wasn't meant for people like you. It is for you. Communication is a fundamental human right.

It's your life, only you know how your brain works and processes the world. There's a million and five reasons why someone might have problems communicating with spoken word, or find it otherwise to be the least optimal form of communication for them personally.

Mouth speech is not a superior form of communication, so someone should never be made to feel shameful for being unable to use it, struggling to use it, or yes, even preferring not to use it even if they could, even if they seem to produce it with relative ease.

You can never know what's happening behind the scenes, or how much work it's taking for some people to sound fluent, or the true intent of thought behind seemingly-fluent but ultimately insufficient speech. Or the hidden costs and consequences of producing that mouth speech.

The more people normalize communicating in all the ways that exist, the closer we can get to communication equality for all.

[disability-talk]

You know, I've seen these discussions about people who have made themselves disabled (though not necessarily on purpose), and it's something I resonate with, and think is so nuanced that it's a discussion worth having in-depth

See, I feel like sometimes people think of "making yourself disabled" as a completely able-bodied person who - through their decisions, either accidental or wreckless - will just... make themselves disabled, and I actually think that's less common. I know for myself, my changing disabilities have been spurred on because I was already disabled. I use myself as an example of a broader point - that is, I think often the ways people think of this topic are somewhat narrow.

There's a special kind of guilt you feel (at least, in my experience) wherein you know your suffering has resulted from your decisions, yet simultaneously knowing that you weren't given a proper chance to start off on a fair playing field. And yet no matter what you feel about this, the pain still hurts just as badly. It still hurts even if you don't blame yourself at all

[disability-talk]

I always see people complaining about queer events being held in bars/nightclubs because they sell alcohol, but you can always go to those things and just not drink. I can't go to queer events at bars/nightclubs because they're never epileptic friendly. I never have and probably never will see a drag show because they come with strobes. I have to stay home while my friends go to bars and clubs because there will most likely be strobes there. I can't participate in a large majority of my community because going there will send me to the hospital and ruin everyone's night. Why do we need to have strobes at things.

[disability-talk]

being disabled takes a lot of energy. i don't really mean like that it is necessarily fatiguing or that all disabilities are energy limiting. but rather the extra effort needed to access an inherently inaccessible world will wear on anyone even if they don't struggle with pain, fatigue, or tiredness as part of their disability

[disability-talk]

there’s nothing shameful about making things easier or more accessible for yourself btw.

if your disability means you can rarely/never cook so you have to order out a lot, or buy precut ingredients, or if you need other people to help you cook even “simple” meals.

if your disability means you struggle with personal hygiene so you don’t shower standing up, or don’t brush & floss “correctly” or long enough, or put up your hair when you can’t handle brushing it.

if your disability means you’re not able to engage in your hobbies in a “normal” or “correct” way. if you have to watch movies multiple times because your brain fog is making it hard to follow the plot. if you need accessibility tools to be able to draw or paint. if you have to do everything from bed.

you’re not doing anything bad or wrong. you’re being kind to yourself and caring for yourself in the ways that you’re able to. it’s nothing to be ashamed of.

[disability-talk]

Please call us disabled!

A text about why disability is the right term

Word count: 415 words

Many people try to avoid using the term disabled and instead come up with all sorts of interesting things. In this text I want to reflect why you should indeed say disabled and why the implications of some of these other things aren't great at all.

The first term I want to talk about is "differently abled". This implies that your worth is depending on what you can provide for society. You being unable to do so "normally" takes something from your worth, so you get called differently abled to show that you can indeed be useful and therefore are worth something. It also implies that you'd get something good with your disability, and that's just not true for most disabled people. The things you "get" are trainable, so everyone could achieve them.

Secondly, let's talk about "special needs". Special needs is an euphimism for disabled. Euphimisms are words supposed to soften the meaning of the original, considered "too harsh" word, or to avoid an unpleasant and offensive word. We for example say "pass away" instead of die or use "Special military mission" instead of Invasion to wash away the harsh reality. Using an euphemism for disabled implies that there is something negative, shameful or embarrasing to cover up, which there isn't.

The term next up is "handicapped". This word stems from old war veterans being considered unable to hold down a job so they had to go beg for money with their "cap in hand". It referred to beggars and people useless to society. And disabled people aren't useless. They're far from it. Additionally, putting handicapped in front of words like "parking spot" implies that there is something wrong with the parking spot. But it isn't. It's "accessible".

"Handicapable" is an even worse euphemistic description of disabled, once again highlighting how they have something making them useless so we have to underline that they totally aren't in our perception. Because if you were disabled, you'd be useless. So we don't want to call you that.

A disability can provide a culture and community, and you take that away when you don't call us by the term we ask you to. A disability is something that makes us unable to do, partake in or experience certain things. It dis-ables us. This is why we want you to call us that. It highlights the way it affects us while also showing our community.

[disability-talk]

Intro

Hey guys! My name is Nyx (they/she/it), and I'm a person with multiple disabilites.

I want to give advice on/talk about disabilities in general, as well as the ones I specifically have. I will also write texts, which will be marked as #blog-entry

You can always drop questions in my ask box and I'm happy to respond to them and/or explain more.

Also, please always correct me if I say or explain something wrong. I want to make this blog as accurate as possible, but I can't be all-knowing so I'd really appreciate criticism, especially from affected groups.

My disabilities/conditions: Autism, ADHD, cl-EDS/h-EDS, PoTS, c-PTSD, DID, Anxiety disorder

Writing these down so you can both see the perspective I have on the entire topic, as well as ask me specific questions, for example about my experience with xyz.

I'm also queer and happy to answer questions on that as well