WE HAVE ALWAYS BEEN HERE

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History Teaches . . . The Power of (Imperiled) Disability Rights

Civil Rights Histories are 'All One Piece String': Disability and "DEI"

A really good overview of the disability rights protections threatened by Trump and how his ableist and racist policies are inextricably woven together.

Disability History Crash Course

Throughout history, disabilities has been viewed in many different ways, from curses and bad luck, to simply unfortunate differences some are born with.  In some ancient civilizations, disabled individuals were often marginalized or viewed through religious/superstitious lenses.  In ancient Greece and Rome, individuals with physical or mental disabilities were abandoned or ostracized from civilization. 

 In Europe during the Middle Ages, disabilities were often linked to sin, religious disfavor, or divine punishment, which lead to social exile.  Often, if the disabled individuals received care, it was from family members or religious institutions.  As the age of Enlightenment came to prominence in the 17th and 18th centuries, society began to shift towards medicalization, which changed the view of disability from punishment, to a natural defect, to be diagnosed and treated. 

The 19th and 20th century brought about the rise of sanatoriums, asylums, and institutions designed as a way to 'treat' people with disabilities.  This new approach of 'treatment' was, in reality, a way to hide disabled people from the public, and often lead to isolation and severe medical mistreatment of the patients.  This, along with the creation of Eugenics movements, lead to many harmful stigmas surrounding disability.

As disability rights movements gained momentum in the mid-20th century, different bills and acts were passed in order to protect disabled people.  Some  landmark events were the Independent Living Movement and the passing of the Americans with Disabilities Act (1990).  As the U.S. shifted away from seclusion and towards inclusion, equality, and accessibility, many of the stigmas surrounding disability began to easy, and people began to see disability as not just a medical issue, but as a social and political issue.

Being disabled shouldn't equal being poor.

Abolish the sub-minimum wage, increase income caps for disability assistance, and establish universal basic income.

digital illustration of a disabled nonbinary person with leg braces. They have a green mullet and are wearing a black t-shirt, purple cargo pants, green chunky heels and a green belt. There's text that reads, 'being disabled shouldn't equal being poor.'

This is a friendly reminder that none disabled people often do benefit from the same accommodations disabled people benefit from.

check out this research station, an archeology of disability!

found here: https://anarchaeologyofdisability.com/en/ (accessible website); https://hub.jhu.edu/2021/08/10/archaeology-disability-acropolis/

[ID copied from alt text: An image of the installation. It is a room with stone brick walls. Mounted on the walls are the photographs of rocky cliffs large panels. Concrete structures in various shapes dot the area, complete with drilled holes to invoke the layering on a weathered rock. On the left, a person on video appears to be signing with captions on their right. End ID.]

From the article:

In ancient times, the path to the Acropolis was a ramp leading from the marketplace of the Agora up to the iconic site where the Parthenon stood. People of all abilities navigated the sloping route, helping one another or being helped as needed within the collective experience of the ascent. In the 19th century, the path was changed to its current form: a narrow, switchbacking trail in keeping with the times by embracing the romance of the solitary pilgrimage. But lost was the journey's communal aspect, along with the potential for visitors with disabilities to join their peers in the ascent. In an attempt to make the site accessible for the 2004 Olympics, for years an elevator car clung to a vertical rock face—until recently, the sole alternative for those unable to navigate the path, and too small for a companion to join them. In May, an installation opened at the Venice Biennale, the prestigious cultural institution, that explores an experiment: a historic reconstruction of the Acropolis through a lens of disability. 'What might it be like to use languages and structures related to disability today to more deeply understand the structures and experiences of the past?' asked the installation's creators.

From the Archeology of Disability Website:

The accessibility of historic architecture not only determines who can experience the past, but it also informs how we think about disabled people as part of history. This installation presents an experiment in the historic reconstruction of the Acropolis in Athens. Our reconstructions recover ideas about bodies and impairment at one of the most canonical, influential, and notoriously inaccessible architectural sites. We explored what it means to reconstruct lost elements of the Acropolis through the lens of human impairment. Such an approach contrasts to the pursuit of “accessible heritage” — a balance between historic authenticity of architecture and technical modifications made for accessibility. We call our alternative to accessible heritage “an archaeology of disability.”  The elements we reconstructed include an enormous 5th Century BCE ramp that once connected the Acropolis to the Agora; a gallery of paintings at the top of the ramp; and a small stone seat, described by an ancient visitor as a place to rest. The ramp’s form is reconstructed as a tactile, touch-based model that transmits vibrations like those caused by the ancient crowds, animals, and carriages. It is ringed with a frieze of braille. The paintings, known through text, are reconstructed in sign language. This reconstruction, titled “Sēmata” (signs) is performed in a film-work. The stone seat is reconstructed in three different sizes and heights. Each is decorated with braille-like patterns that communicate the optical effect of weathered stone into a tactile form. Collectively, these reconstructions demonstrate another way to consider disability and the historic past — one that moves beyond technological fixes to physical objects. Disability emerges as a form of historical inquiry, archaeology, and reconstruction — one informed by the experience of collective human difference across space and time. 

further reading [dm me for pdf]: disability and preservation (david gissen)

US people with disabilities in the supplemental security income (SSI) program can't have a penny over $2K in their bank account at any time in order to keep their benefits.

You know this economy. That amount is completely unlivable & makes it hard for people with disability to save for the future or have a safety net for emergencies.

A new bill would raise the max to $10K (or $20K for married couples). It would make a world of difference.

Show support by contacting your reps.

Edit: Had the word petition on the mind, mistakenly called it that.

I fucking hate that the general response to RFK Jr's eugenist take on autistic people is "autistic people do pay taxes, autistic people do work, autistic people do date!"

Some autistic people don't and that shouldn't make them less worthy of life. Some autistic people do need constant help and support and that shouldn't make them less worthy of life.

Once again we're falling in the right wing trap of :

They make a hateful, fascist statement

Instead of focusing on the fact that it is hateful and fascist we try to show them that they are factually wrong

We throw our own allies and the most vulnerable of us under the bus in the process

We legitimise an only slightly less hateful, fascist view as we go

They have completed their goal of making us accept the still hateful, fascist second version, hurrah. What a victory.

Right now what we're getting to with that is that autistic people who can work and pay taxes are okay, and the others aren't. Fuck this shit.

Same thing happens with the people who are being deported ("they have a visa!", "they didn't even have a criminal record!" -> even if they didn't have a visa, even if they did have a criminal record, deporting them and detaining them in what's essentially a concentration camp wouldn't be okay, you absolute tools of fascism.)

What is happening with section 504? And what you can do about it? Section 504 is under attack. If you live in any of these states, you can call your representatives.

DISABILITY INJUSTICE AFFECTS EVERYONE. You shouldn’t care “just because” you could be disabled one day. You should care *now*, because this will come back to everyone.

Images from @/myelasticheart on Instagram

Disability 101: The language of Disability

Trigger Warning: this post contains discussions of disability slurs (specifically the C and R slurs), and the history of disabled people's use in medical experimentation, including specific (but brief) examples.

Most of the content on my blog is aimed specifically at authors, artists and other creatives, but I've been noticing for a while now, that many of the people who come here to learn about writing and designing better and more compassionate disabled representation are often missing what I would consider to be pretty fundamental knowledge of the disabled community, or have gotten said information from a questionable source, for example, through corporate sensitivity training, who's given them just straight-up incorrect information. This isn't surprising, nor is it really the fault of the people seeking to learn more, rather, it's because of the way society at large talks about (or I suppose, doesn't talk about) disability. However this lack of foundational understanding often leads to creators accidentally including harmful tropes, using damaging or unnecessarily coded language or just including misinformation about our community into their works, often in ways that are quite hard to change by the time they realise there's an issue.

But before we continue:

The disability community is massive and we have a lot of history most people are totally unaware of which influences a lot of these fundamentals. It doesn't help that there are a lot of "allies" to our community who completely ignore and speak over us, many of whom have bigger platforms that actual disabled people, so their advice is seen and shared by more people, muddying the waters even further and making it difficult to discern what is and isn't "good information". Because of that, I understand that it can be hard to know where to start, so while most of my content is dedicated to specifically talking about disability representation in media, and how creators can include better representation in their own works, I also want to take some time to talk about some of the fundamental information about the disabled community I feel everyone (creator or not) should know.

Today I'm going to start on what I think trips people up the most when they're first trying to learn: The language surrounding disability. What terms we (generally) prefer, what terms to avoid, all that. I don't think this is necessarily the most important thing to know right off the bat, but it is probably one of the topics non-disabled people are the most confidently incorrect about, and where general misinformation is the most rampant.

Disclaimer: Before we go ahead, it's important to remember that the disabled community is not a monolith, especially so when we are talking about something like language and preferred terms. This post is designed to be a starting off point, not a rigid set of rules or all-encompassing guide. Different individuals may prefer different terms, possibly even ones listed in this article as words to avoid. Articles like this should always be taken as a general guideline but you should always be respectful of an individual's preference and refer to them how they have asked you to refer to them, even if it goes against general advice you've been given. However, it's important to bear in mind that just because that individual has a preference for a less popular term or even a term others find offensive, doesn't mean every disabled person is ok with it. It's also important to consider that different communities, cultures and countries, as well as people who speak different languages or even dialects of the same language, will have different general preferences, and so it is crucial to do further research on your own.

Disability and disabled are not dirty Words, it's ok to say it

If you grew up in the 1990's or later, like I did, you very likely heard words like "special needs," "differently-abled," "Special education" (often shortened to SPED). There's a very good chance that if you worked in education, healthcare (especially for children), with some disability charities or even if you were the parent of a disabled kid during this time, you were likely told to use these terms as a replacement for words like disabled, because "disability" and specific terms like "autism," "amputee," "downs syndrome," "paraplegic," etc put the focus on the things the person doesn't have or can't do. Calling them "disabled" implies there is something wrong with them, whereas these alternatives put a focus on the idea that folks with these conditions are "different, not less". At least, that's what a lot of people are told.

This is what we call coded language, and it's an issue because a lot of disabled people despise it. There are exceptions, of course, I know a few people who are indifferent, but I honestly can't recall anyone who was disabled themselves who preferred it outside of very young children who's parents insisted it was better (though most chose to move away from it as they got older).

But why? well, because of something that I'm sure you'll notice is going to be a pattern throughout this post: we didn't create these terms, and they weren't made for us, not really.

Most disabled people don't really see using the term "disabled" or any of the modern diagnostic terms (for the most part) as an issue. Yes, many do, by definition, focus on things we don't have, can't do or might struggle with; the definition of an amputee is someone who is missing a limb, the definition of paraplegia is someone who has paralysis in their lower body and legs, meaning they might not be able to or might struggle to move them. The definition of a disability is a little more complex and varies from country to country, but the American CDC defines it as "Any condition of the body or mind that makes it more difficult for the person with the condition to do certain activities and interact with the world around them."

These definitions sound negative, but it's not a bad thing to acknowledge someone doesn't have something most other people possess, or struggles with things others don't. It doesn't make someone "less" to acknowledge they have a barrier others don't. It's just acknowledging a part of our lived experience and acknowledging that our lives, because of these barriers, can sometimes look different, in both big and small ways.

However, a lot of people who are not used to being around disabled people get deeply uncomfortable with this, and this refusal to use straight-forward words like disabled is a symptom of that. This discomfort comes, in my experience, from a lack of understanding of disability as a whole, and potentially misplaced sympathy. They don't know how we do things they see as important, how we could do without the things they have, or what technology or services is available to help us bridge those gaps. This unknown makes a lot of non-disabled people scared, uncomfortable or makes them sad for us, even when it's not necessary. They see that we can't do something they can, like move our legs for example, and make a series of assumptions based on incomplete information. They imagine a life like ours and don't know how it could possibly be fulfilling, because they are missing so many vitally important pieces of information, making our lives look empty, bland and sad.

They don't have the full picture, but ironically, this discomfort stops them from learning more. If you go into a topic like this, assuming it will be depressing and bleak, why would you want to double check? For many, the fact that it doesn't take much for them to become disabled too adds to that feeling of discomfort and fear, so they turn away and try to pretend we're just "different" and insist on replacing the "scary" words that acknowledge the challenges and barriers they too will have to face if they become like us with things that comfort themselves, not us.

All of this is especially important to remember in the cases of disabled people who are severely limited by their disabilities (whether it be due to the disability itself, or the lack of accommodations for it) and who's disabilities do have negative impacts on their lives. It's important to acknowledge that for some of us, the negative stigma around our disabilities is mostly misinformation and an incomplete picture, like I mentioned before, that altering how something is done or approaching things differently can completely remove those barriers for some of us (e.g. like building ramps instead of stairs), but it won't for everyone. terms like "differently abled" completely ignore and dismiss the experiences of this part of the community, all they do is remind the person that you are uncomfortable acknowledging what they are dealing with. "disabled" on the other hand is inclusive of us both.

Person-first vs Identity-first language

Another aspect of the language surrounding disability that causes confusion in a lot of non-disabled people is whether or not you should be using person-first or identity-first language.

Person-first is where you put the person before the name of the disability, for example "Person with a disability," "Person with autism," "person with amputations," etc. Identity-first language, on the other hand, is where you put the person's disabled identity first, so "disabled person," or in the case of some disabilities, you might drop the need to say person at all, so it would be "autistic" and "amputee".

Unlike the last section, the answer to which one you should be using varies a lot on who you ask, and both types of language have their own benefits.

Person-First

Chances are, if you've done any kind of work that would have put you into contact with disabled people in the last few decades or so, you were instructed to use person-first language. weather you are a journalist, a doctor, an educator, a government employee, or were part of many, many other industries, chances are that you were taught to use it.

The reason for this is that, before the introduction and widespread use of person-first language to describe disability, non-disabled people were much less kind in how they spoke about us. Many people openly used slurs, even in formal settings, or referred to us (individually) as "the disabled," "the wheelchair," "the blind," "the downs syndrome," etc. e.g. "the wheelchair over there asked for assistance," or "I'm seeing the downs syndrome at 3pm."

This was especially prevalent in the medical field, with healthcare professionals often exclusively referring to their patients in this (or similar) ways, refusing to acknowledge their personhood, the value of their lives or their lived experiences beyond their disabilities. The medical field often mistreated and abused disabled patients, and before the introduction of laws protecting the rights of disabled people, this was not only completely legal to do, but was sometimes encouraged. On top of general mistreatment, disabled people, specifically, those being kept in mental institutions, asylums, and other places dedicated to their "care" (or containment) were often used as human test subjects.

There are countless examples throughout history, such as when Dr Henry Heiman infected two boys with gonorrhoea without their consent or the consent of their parents in New York in 1895, one of whom was only four years old with epilepsy and the other was 16 years old with unspecified intellectual disabilities. Dr Thomas Francis infected multiple disabled individuals with influenza in 1941, and George L. Fitch who infected six children under 12 living in the "Hawaiian Leper Colony" with what he thought was Syphilis in 1833. The personhood of the victims of these studies were often ignored or downplayed, so it's not too surprising then, that when the disabled community was finally able to start pushing back against their mistreatment in the late 1900's (The specific decade varies depending on which country you're talking about), they advocated for language that put their humanity and personhood first and foremost, making it much harder for people to forget that they were, in fact, still people and deserved to be treated as such.

Today, person-first is still preferred by parts of the community who still face more dehumanisation than most in the disabled community. for example, it's still very popular among people with downs syndrome. Of course, generalisations are just that: generalisations. There are many people with disabilities who experience very extreme dehumanisations, and still prefer not to use person-first, and vice versa.

There are also a number of disabilities that simply don't have names that work using identity-first language for grammatical reasons, such as people with ADHD (though some online communities use "ADHDers" in more informal settings) or people with BPD. Most often these are the disabilities who's names are acronyms, and so person-first is still used, but more out of necessity than genuine preference.

Identity-First

Identity first isn't technically newer than person-first language, but it's use, and it's name, has changed connotations recently as it has begun to become popular in parts of the community.

You see, for some people, their disabilities are an important part of their sense of self, or at the very least, their disabilities are so impactful on their lives, for better or worse, that they feel like they would be a completely different person without them. This is what we mean when we talk about disability as an identity, and what we mean when we say identity-first.

For some folks who prefer identity-first language, they feel like person-first is trying to distance them from their disability, often for the comfort of non-disabled people. It makes a disability sound like something you carry with you and that you could simply leave at the door if you could, not an important part of yourself. It sounds as strange as saying "A person with creativity" as opposed to "a creative person" or, to compare it to another identity of my own, "a person with gayness" instead of "a gay person".

This particular reason is popular among communities such as some parts of the autistic community, as autism impacts their brain, their personality, their interests, the way they communicate with others and more. If they were suddenly "cured" of their autism, they would be totally different people, and so they feel "autistic" is a better descriptor, as they simply can't be separated from their disability. It's a part of what makes them who they are. This is also popular among people born with their disabilities who have only ever known life that way, or those who have had their disabilities for a long time. Their disability, weather directly (such as autism) or indirectly (due to how people treat them, what opportunities or lack there of were available to them, the people they interacted with, etc) has impacted them so much that, once again, if they weren't disabled, they would have become a wholly different person.

Some prefer identity-first because they feel that they should not have to remind others that they are people. They feel it is unnecessary, and that if you need to be constantly reminded that any group of people you don't belong to are still people just because they are different to you, that's honestly just concerning. And then there are some in the community, who just prefer it because it's usually shorter and easier to say.

There's also a lot of people who don't really care either way. Personally, I fall into this category for the most part, as do most people I know. while I do lean more towards identity-first because it's easier to write and say, and because I agree, I think we as a society shouldn't need to be reminded of anyone's personhood so frequently in 2024, I also recognise that unfortunately, some people do still need that reminder.

It's important to note, that calling someone "the wheelchair," "the disabled," "The autistic," etc is not identity-first language, it's typically under the categorisation of objectifying language and you'll be hard-pressed to find anyone who likes or prefers that. Using identity-first language for these disabilities might look like, "Wheelchair user," "autistic/disabled person" or "that person is disabled/autistic". A good rule-of-thumb is to just avoid using "the" when referring to individuals or even groups of people (e.g. the disabled, the elderly, the gays etc).

Slurs

I also want to talk about slurs briefly. A slur, in this context, is defined by Merriam Webster as "an insulting or disparaging remark or innuendo," though it is often used specifically when referring to words of particularly strong impact, often with a lot of history behind why they have that impact.

For the disability community, many (though not all) of our slurs are somewhat unique, in that they were once considered medical diagnoses. While a lot of people do make this argument disingenuously, I do believe there are some people who are genuinely confused about this, which is why I quickly want to bring it up.

Words like "cripple," "retard," and many, many more I am not comfortable saying for a variety of reasons, all started as actual diagnoses. In fact, several of the sources I used even use them in this way, such as the sites and books I found talking about the two boys Henry Heinman infected almost always referring to them as being "mentally retarded" or "experiencing mental retardation".

I've talked about "cripple" specifically in detail before, but in all of these cases, the word went from a neutral descriptor (at least, in theory) to something that was used in increasingly negative ways, both by the medical professionals diagnosing people with these terms, and the general public. In medical settings, these words were often used to justify the horrible treatment directed at people with disabilities (Like we discussed before), and even after protections were put into place, the language kept its associations. In the general public, these words started being used as insults directly, both directed at disabled people and in general. If you went to school in the 2000's, you probably heard "retard" being used as an insult on the playground as a replacement for stupid or ridiculous. You can see how, when a whole generation starts associating a diagnosis with "ridiculous" it starts to become an issue. This would then feed back into how the terms were used medically. As much as we'd like to think of doctors and healthcare professionals as being unaffected by cultural norms, history has proven time and time again that this was not the case. If you'd grown up hearing a real diagnosis as a synonym for an insult, it's not going to make your opinion of the patients you're giving that title to particularly positive unless you're going to spend a lot of time deconstructing those implications, which, in my experience, many do not.

So yes, even though these might have been acceptable terms once, their use in overwhelmingly negative ways has caused a lot of disabled people to become deeply uncomfortable with them, and they have since been deemed slurs.

Of course, not every slur related to disability came from outdated diagnostic terms. The M-slur used against little people, for example, originated during the times where little people's only option for employment was in freak-shows and other demeaning rolls, such as being kept as pets by nobility. The M-slur was used to compare them to a type of small, annoying fly, a midge, as a way to further humiliate and dehumanise them.

There have been movements that attempted or are currently in the process of reclaiming some of these slurs, with notable examples like the "cripplepunk" community for physically disabled people (They do, however, ask that able-bodied people call the movement "c-punk" instead). Though other words like "retard" are more debated, and many people with intellectual and cognitive disabilities (who the slur was usually directed at) feel it is too early to start that process, or feel it should not be reclaimed at all. At the end of the day, it is the people with the disabilities impacted by these terms who get to decide if, how and when a slur is reclaimed, not outside forces and wider society.

Focusing back in on authors and creatives for a moment, if you're writing a disabled character, but you yourself are not disabled, I'd highly recommend against using slurs in your work, even if your character is part of the community that could reclaim it. Even if you are disabled in that same way, I'd recommend caution. I often call myself a cripple in a joking light, but I probably will never feel comfortable including it in any of my work (outside articles like this where we're discussing it, of course). If you really, really must include these slurs, make sure to get input from others in the community.

Outgroup Terms

Finally, one last thing I want to bring up is in reference to the "outgroup terms" disabled people use for people without a disability.

A very common misconception is that if you aren't disabled, you're able-bodied, but this isn't true! Able-bodied (sometimes shortened to A.B.) refers to people without physical disabilities specifically, so you can be able-bodied but still have an intellectual disability or some kind of neurodivergence like autism, dyslexia, or schizophrenia. Likewise, you can be neurotypical - the word for people who aren't neurodivergent - and physically disabled.

If you want to refer to people without any disabilities at all, the most common way to do that, and the term I've been using throughout this post, is just non-disabled. Some people also use the term "abled" but this isn't as widely agreed upon, as many people assume it's just a shortened version of able-bodied.

Conclusion

As I said in the beginning, this post is meant to just be a general guide, not hard and fast rules. The disabled community isn't a monolith, and we don't agree on everything and that's ok. Different people and groups will have different preferences and that's ok too. If you're an outsider to the community and you aren't sure what words or terms to use, just ask (so long as you're polite about it and/or it's relevant to the conversation at hand, it's fine) but always respect an individual's preference over a generic piece of advice like this post. Under no circumstances should you ever correct a disabled person on how they refer to themselves and their own community. If they refer to themselves as disabled, that's great. If they call themselves, a person with a disability, also great! I can not tell you how many non-disabled people who have told me I am "disrespecting myself" for calling myself an amputee, autistic or disabled.

At the end of the day, how any individual wishes to refer to themselves is their choice, but for creatives, especially those of you writing disabled characters as a non-disabled person, it's important to be aware of the reception and implications different words may have with your audience.

[Thumbnail ID: An image of overlapping speech bubbles on a blue background containing several terms, ranging from commonly accepted to offensive, used to refer to disabled people. Some of the more easily visible bubbles say things like "differently abled," "Disabled," "Special Needs," "Person With a Disability," "Special," "Slow" and many more. In the centre, the biggest bubble says "Disability 101: The Language of Disability." /End ID]