disability rights

Disabled people’s lives are not tragedies.
Parents and carers are not “heroes” for loving disabled people.
Disabled people’s private moments should not be shared without consent on your “warrior mom” blog.
Disabled people are not your pity hires, dates, or friends.
Disabled people do not exist to be saved or spoken for by non-disabled people.

Treat disabled people with respect and dignity.
Treat disabled people like people.

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[Image description - a series of tweets by @EbThen that say:

I should’ve gone to bed before the Stephen Hawking news broke. Seeing a headline describing him as having “overcome” a “debilitating disease” to “publish books on the mysteries of the universe” is making me grumpy.

Stephen Hawking was an exceptionally privileged white English man who had access to the necessary supports to successfully navigate a world that puts little importance on making itself accessible. 

I mean, he did pretty amazing stuff but it wasn’t amazing because he had ALS and used a wheelchair and AAC. Those are just things. The amazing stuff Stephen Hawking did was amazing because he thought and said amazing things.

Stop being amazed that a few Disabled people do awesome world-changing stuff. Start wondering why more of us don’t. It’s not because a wheelchair and AAC somehow get in the way of doing theoretical physics. It’s because a lot of us deal with ridiculously huge access barriers.

Also stop only valuing Disabled people who do awesome world-changing stuff. We don’t need to be supercrips to be worthwhile. Disabled people are allowed to be normal schlubs and not be treated like that means we’re failures.

When you write a headline that implies ALS, a wheelchair and machine-facilitated speech are natural and expected barriers to being a successful scientist, you’re telling on yourself. Those circumstances aren’t inevitable barriers to doing all sorts of science.

What’s frustrating is that we’re talking about a Disabled person who had so much opportunity and access to excellent supports and tools and people still talk about that like it’s tragedy. And I’m thinking how many folks I know could benefit from those things.

Ableism is so fucking exhausting]

Anyone who wants to be an ally to the disabled and the chronically ill must support the technologies which make their lives better. You cannot support someone with chronic pain while also suggesting that all pain relievers are the work of the devil. You cannot support someone with diabetes while promoting politics that end the availability of insulin. 

You cannot claim solidarity with a group of people, while at the same time expressing politics that would literally kill them. 

The fact that “My health is no one else’s business” is heavily considered a controversial statement will never cease to baffle me. Disabled people are not here for your entertainment simply because some of us have visible symptoms, or some symptoms that must be discussed for the sake of accessibility. If I don’t want to disclose information about my health that shouldn’t be seen as rude. Asking highly personal and inappropriate questions and not taking no for an answer, however, SHOULD be.

Nice to know our supports are more appreciated than we are. 🙄

I was initially excited that stim toys were going mainstream. It meant I could get awesome new ones much cheaper than before. For example, my Thinket (still my best stim toy) was $150. My fidget cube from the kick-starter was $40. Last week, I bought a fidget spinner at the mall for $7. That part is awesome.

Now, though, non-autistics are using them when they shouldn’t and schools across the country are banning stim toys.

Leave it to the “normals” to ruin something special again. 😢

Start using support levels instead of functioning labels!

For the uninformed, functioning labels are terms like high functioning autism, low functioning autism, mild autism, severe autism. Other words like moderate or level 1, level 2, etc may be used too.

Functioning labels are extremely offensive because they’re placed on autistic people based on observation from the outside. This is problematic for three reasons.

  • Functioning labels determine how autistic people are treated. People associate “low functioning/severe” with incompetence or infancy and they end up treating the autistic person like a pet or a baby. High functioning/mild gets stereotyped as people who are just a little quirky and their difficulties get ignored as laziness or intentional stubbornness.
  • Functioning labels imply brokenness and treat people as if their intrinsic value is determined by what they contribute to society rather than the fact that they are a living being with oxygen in their lungs and blood in their veins like everybody else.
  • Functioning labels create a dichotomy as if there are differing “levels” of autism or that people exist on different areas of the spectrum. NO, NO, NO, that’s not how it is.

Think of spectroscopy and how the elements create their own signature color lines. Now put peoples’ names in place of the elements: Hydrogen/Harold, Helium/Henry, Lithium/Luke, Oxygen/Olga, Carbon/Carol, Nitrogen/Nadine.

Autism is like that. We’re all on the same spectrum and all that is unique is how we display our symptoms, our sensory issues, our splinter abilities and so forth.

In light of that, I want to change the language. Let’s start pushing for support levels instead of functioning labels.

High support: Anyone who isn’t able to live independently and needs help with some or all of their basic daily living skills such as eating, bathing, basic grooming, putting on makeup, getting dressed and completing tasks. Can be abbreviated online or in writing as HSP for High Support Person or HSAP for High Support Autistic Person.

Usage in speech: Clarissa is a high support autistic person and needs assistance with getting dressed and taking a shower.
Abbreviated usage online: I’m a HSAP and I’m really into physics, so the poor sucker who signs me on is gonna hear a lot about it when they hand me my iPad! 

Medium support: Anyone may or may not live independently and doesn’t need help with basic living skills, but needs help with other things like cooking, completing some tasks, transportation if unable to drive and assistance for things like grocery shopping. Can be abbreviated online or in writing as MSP for Medium Support Person or MSAP for Medium Support Autistic Person.

Usage in speech: Kevin is a medium support autistic person and needs some assistance to prepare meals and shop for the wood he uses for his carpentry projects. His boyfriend, Max, usually helps him with those.
Usage online: I’m a MSAP and I’m looking for info about saws. Any fellow auties know what’s best for cutting oak? 

Low support: Anyone who more often than not lives independently and may only need assistance with minor things like balancing a checkbook, getting started on some tasks like organizing a garage sale or arranging to move from one house to another. Can be abbreviated online or in writing as LSP for Low Support Person or LSAP for Low Support Autistic Person.

Usage in speech: Jesse is a low support autistic person and she only needs help keeping her checkbook balanced.
Usage online: I’m a LSAP and I’m thinking about moving to Seattle. What’s the weather and traffic like there? 

Reasons support levels are better:

  • They don’t make assumptions about intelligence
  • They don’t encourage infantilization or pity
  • They sound more respectful and dignified

Ditch functioning labels and start using support levels. These terms can apply to practically every kind of disability, not just autism.

For the record, I’m a MSAP.

Please reblog this whether you’re disabled or not. Make this viral.

PLEASE INCLUDE DISABLED PEOPLE IN YOUR ACTIVISM.

(note: I’m not gonna talk about Trump mocking Serge Kovaleski primarily b/c Kovaleski does not ID as disabled and does not want to be used as a political talking point. Which is fair.  yes, it was awful. no, you don’t get brownie points for agreeing with me that it was awful. Disabled people have evolved to have thick skin, and a politician mocking us is not new or unsurprising. this list will deal with policy and specific issues facing the broader disability, autistic, d/Deaf//HoH, and neurodivergent communities.)

(other note: I generally use adjective-first language but I probably also used person-first language in here somewhere. I personally prefer to use the former for myself but I respect that other people in this community use different language.)

-the federal site for IDEA has been taken down

-all mentions of disability rights have been deleted from the website

-betsy devos had no idea what the Individuals With Disabilities Education Act was when asked and stated that standards for accommodations in education should be left up to the state (this is a TERRIBLE idea)

-if Obamacare is repealed, we have the most to lose. Most of us will not be able to afford medical expertise or treatment to maintain a basic quality of life. Some of us will die.

-he called one of his books Crippled America. Unironically. Ugh. 

-the january 2017 unemployment rate for nondisabled civilians was 4.9. For disabled civilians, it was 11.0. These numbers do not reflect the number of disabled individuals who work inadequate part time jobs, who are institutionalized, or have given up looking for work.

-the US still has not signed the UN documents about the rights of People with Disabilities. 

-Justices like Justice Kennedy have historically been swing votes on cases involving disabilities. Justices like Scalia have not. Potential Supreme Court Justice Gorsuch has a very ugly disability rights record, which includes defending a college that fired a professor undergoing chemo when she requested to give her lectures over skype (there was a flu going around on campus and being there would put the staff member in danger due to her suppressed immune system)

-By the time he was elected, Donald Trump had already dealt with at least eight lawsuits concerning lack of basic accessibility (ramps, braille) on his properties

-the Supreme Court case legalizing the sterilization of potentially disabled people without their consent (Buck v. Bell) has never been overturned and has been cited as a legal precedence in a lower court as recently as 2001.

-the Judge Rotenburg Center is still using painful electric shocks on disabled students as punishment, despite the FDA advising them to stop more than two years ago.

-similarly, many disabled people are not  paid federal minimum wage b/c section 14c of the “Fair Labor Standards Act” is still on the books and so hundreds of thousands of disabled peoples’ wages are “proportional” to their productivity (compared to an abled worker). Goodwill is one of the most famous companies that exploits this loophole.

-the already gutted SSDI program is even more at risk-Trump has spoken about emulating the British reforms for their disability program. Off the top of my head, I can think of nine or ten different people who died as a result of the recent “fit to work” assessments and bedroom requirements in the UK.

-disabled people depend on the Department of Justice’s civil rights division to enforce the ADA and protect us from blatant discrimination. Trump has already proven that he does not care about the funding or effectiveness of the department, and is willing to destabilize it to forward his political goals. 

-Donald Trump is anti-vax and is complacent to that movement’s violent and intolerable rhetoric surrounding autistic and other neurodivergent individuals

-Sessions called disabled children protected by federal laws (like IDEA) “the single most irritating problem for teachers throughout America today”. In this same statement, he stated that he did not “remember hearing of gun shootings prior to 1975 when Congress began telling ten percent of our students [they] are not responsible” (the IDEA was passed in 1975, improving the way disabled children were treated at public schools)

-the new administration’s refusal to address fatal police brutality is also an issue of disability rights, given that around half of victims shot by police officers are disabled or neurodivergent. (like eric garner, who had asthma) 


In case this list didn’t clue you in: the disabled community is scared. We don’t know what to expect from the next four years, we still haven’t come close to equality, and we are usually left to fight our battles alone. That’s why I’m asking whoever reads this to stand with the disability community against ableism and against policies that will kill us. People have done a great job in the past few weeks of expressing solidarity with muslims, immigrants, refugees, latinx people, LGBT people, and black people. And, honestly, that’s great. Thank you and please keep doing it. But also be aware that disabled people are one of the most vulnerable demographics right now, and be aware that we’re also one of the most ignored. We are made invisible by the media and by society too easily. Please, you have to see us and you have to stand with us. 

Looking back on history, it’s impossible not to notice that people with disabilities don’t fare well in authoritarian regimes. Please help us make this time different.

Me, a disabled person: This thing is ableist and actually a huge issue for the disabled community.

Other disabled people: Yes I agree this is definitely an issue

Abled people: UM wow this is NOT “ableism” whatever that even IS. I have MET a SINGLE disabled person and they DID NOT face this issue so it’s obviously FAKE. I bet you’re not even disabled. FAKERS.

One thing nobody teaches you is how politicised being disabled is. Your whole existence being called a waste of resources. Your whole worth being boiled down to whether you can work. If you can, you’re not disabled and get nothing. If you’re not, you’re lazy and deserve nothing.

Accessibility is seen as a burden and us demanding too much like the greedy people they claim us to be. No handouts! No Handouts! We are invisible and subhuman. We are the other. We are portrayed as burdens to society for simply wanting to exist in the world as they do.

The ability to live week to week is constantly in jeopardy. Lost jobs from sick days. Rising costs of medical care and accommodations. Your government assistance becomes a talking point and a target. People rallying for you to starve instead of paying any taxes to your care. One day your means to live just disappears without fanfare or your input. ‘Austerity measures’ being levied on us for being ‘leeches’. They might not kill us directly but they don’t care about leaving us to die.

Right to die advocates fighting valiantly for euthanasia but doing nothing about disability rights. Nothing about accommodations. Nothing about accessibility. Nothing about subsidies or in home care. They’d rather give us the ability to die than allow us to live. Because we are tragedies.

Burdens.

Pet peeve of the century...

Social movements that exclude disabilities because “it’s not our priority right now.” Especially when these groups include “intersectional” in their names.

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One of the main characters on HBO’s hit series, Game of Thrones, is paralyzed. Another has lost his right hand. We’ve met an important character with a severe skin disorder and another with an intellectual disability.

And Peter Dinklage, the actor who comes first in the credits, is a little person. So is Rebecca Cokley, executive director of the National Council on Disability. She’s a fan of the show — in part because it’s given average-sized viewers a new set of references for people who look like her.

‘Game Of Thrones’ Finds Fans Among Disability Rights Activists, Too

Photos: Helen Sloan and Macall B. Polay/HBO

On bearing witness to the humanity of disabled people and the destructiveness of ableism

One of the most powerful things that we can do is to bear witness to the humanity of disabled people and the destructive consequences of ableism. When we bear witness to our humanity and to the things that others do to us, it changes the conversation. Our stories are powerful.

Some people have the privilege of being largely untouched by ableism. (Or being untouched by a particular kind of ableism.) Most people who are privileged in this way are also unaware of how deeply marginalized disabled people are being harmed. (I’m using disability as the primary example here, but this actually applies to ever kind of marginalization.)

We are dehumanized, and a lot of people don’t notice that it’s happening. They’re taught to overlook our humanity, and a lot of what happens to us is hidden from them. When people learn how to notice, they often start caring.

Bearing witness to our humanity means making it impossible to discuss disability in the abstract. It means making people have to notice that when they talk about disability, they’re talking about *actual human beings*. We do things. Some of us have jobs. Some of us are artists. Some of us write. Some of us are married. Some of us are fans of TV shows. Some of us are experts in our fields. Some of us cook. All of us matter. Making people notice us as real human beings changes the conversation about disability.

Speaking out about the consequences of ableism also changes the conversation. When institution survivors bear witness to what happens in institutions, it becomes much more difficult for people to believe that institutionalization is good for disabled people. When people speak out about what authoritarian childhood therapy did to them, it’s harder to pretend that compliance training is harmless. When people speak out about electric shock, it is much harder to pretend that people who are tortured with electric shocks think that it makes their lives better.

When disabled people talk about what it is like to learn the name of their disability by eavesdropping and googling, some parents listen. Likewise, when disabled people talk about what it’s like to grow up without accurate language for ourselves, some parents come to understand the importance of talking to children about their disabilities.

Bearing witness also matters to other disabled people. We often learn to overlook our own humanity. We often learn to disregard the things that others have done to us. When other disabled people are unapologetically human, it’s easier to see ourselves as human. When other disabled people talk about the harm ableism does, it’s easier to remember that these things shouldn’t happen to us.

This doesn’t always work. When people with disabilities bear witness to our humanity and to what happens to us, we often get hostile responses. Even when some people are listening, there are usually also angry people who are not. Even when people are eventually willing to listen, they are often initially angry and mean. Those of us who talk about these things pay a price for doing so. Everyone has the right to decide for themselves whether this is a price they’re willing to pay in a given situation.

Your stories belong to you. Stories can be a powerful force for liberation, but you are not a liberation object. You are a person. You have the right to decide whether or not to tell your stories. If you choose to tell stories, you have the right to decide which stories to tell, how you want to tell them, and who you want to tell them to. (Including, whether or not you want to answer questions that people ask you.) You can also change your mind. Doing some advocacy work doesn’t make you an advocacy object, and it doesn’t strip you of the right to say no. No matter how politically or socially useful your stories are, they belong to you.