disability rights

Last time I made a post about this, I made a lot of people angry, but disabled individuals deserved to be explicitly protected in the constitution, and that’s that.

Constitutionally protecting disabled people literally harms nobody but the corporations and people that actively attempt to hurt them, so if you’re still mad about that, maybe you should reevaluate your outlook on life

In what backwards universe do neurotypicals equate autistic people saying “hey, don’t post videos / blogs showing your autistic kids in crisis situations they would find humiliating” means we’re trying to ignore any autistic person with extensive care needs?

DEAR NEUROTYPICALS, here it is in the plainest English I got:

We say “hey, don’t post those video” because the person in the video is a human being who deserves their privacy. 

A disabled human is not a circus side show to be gawked at. 

We never saw videos of Stephen Hawking with his wheelchair stuck on a ramp. We don’t know how he went to the bathroom or the routine for getting him dressed and groomed in the morning. We never saw him with food on his face or if a muscle spasm caused him to tip in a weird position in his wheelchair. His carers did everything to keep his private life private. Sometimes rumors and bits got out, but for the most part the public wasn’t privy to what went on in his house until years later.

Gee, how hard is that, to let a disabled person have their privacy? NOT THAT HARD.

Showing videos to the public that depict the autistic person in undignified / humiliating / crisis situations is not educational at all. It’s voyeuristic, exploitative and a destruction of their privacy.

I don’t even like it when parents post embarrassing videos of their able bodied / neurotypical children, but at least NTAB kids can say “mom, turn the camera off! Mom, take that video down!”

Someone who can’t speak or advocate for themselves that way can’t defend themselves against how they’re being portrayed to the public.

Autistic people don’t say “no videos like that” to people because we want the ugly side of autism to go away.

We want you to stop exploiting people who can’t defend themselves against that exploitation. 


Here, let me break it down so even a child can understand.

Did the person in the video say you can share it on the internet?

If yes, go ahead and post it.

If no, only share it with a doctor if the behavior is a symptom of something and then delete it or keep it out of the public eye.

If it isn’t possible to get a yes or no from the person, DO NOT POST IT ONLINE!!!

Hey, human rights activists, looking for something to rage about?

Because Betsy devos is trying to kill the Special Olympics!

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She’s also proposing taking:

- 51 million dollars from programs to help autistic people

- 7.5 million from the institute of the blind

- 5 million from resources to get books for blind children

Betsy devos is a cartoonishly awful monster of a person and it’s clear that she is out to get the disabled community. Don’t leave us out of your activism. Don’t leave us to fight this on our own.

And for the love of god vote Democrat in 2020

Autism Speaks is to autistic people what PETA is to animals. PETA and Autism Speaks teamed up once and tried to spread a lie that milk and dairy causes autism.

A$ pretends to stand for autistic people’s rights, but it pushes us aside in favor of caregivers who live with us, utilized stigmatizing rhetoric that paints autism in a most negative light and aims to destroy us in every figurative way when it’s sure nobody’s looking.

But Autism Speaks forgets that autistic people can see and hear their crap.

If you are for social justice, you will stand with autistic people against Autism Speaks.

Don’t light it up blue in April or any month of the year for autism. “Autism Awareness” isn’t enough anymore, autistic people of all abilities deserve to be accepted, accommodated, included and listened to regardless of how they communicate.

Autism intersects with so many other social justice issues. Please don’t forget about us when you advocate for equality and and end to discrimination.

#REDInstead

You know another way to say “corporal punishment”, “spanking”, “whipping”, “whoopin”, “licking”, “swatting”, etc.? Physical abuse.

You know another way to say “safety” software for older teens and grown ass adults (in college and w/ jobs) that tracks location, censors websites, and drains battery? Malware.

You know another way to say refusing to vaccinate, “not believing in” therapists and psychiatrists (when your child desperately wants access to one), and refusing livesaving puberty blockers and hormone therapy for trans teens? Medical neglect.

I’m tired of being PC about this shit, so let’s get a thread going: REBLOG with your “favorite” authoritarian parenting practice and the wack ass euphemisms you’ve seen for it.

Concept: a cooking show where each new challenge is creating a food that can be easily eaten by people who have allergies.

A challenge where bakers have to make carrot cake, typically made with nuts, taste exactly the same but they cannot use any sort of tree nuts.

A challenge where a team of chefs has to make something, but only one person can taste anything they are making because it’s a simulation where the other chefs are ‘allergic’ to the food.

A challenge where chefs have to make gluten and egg free pasta, and it must taste good.

A challenge where cooks make an easy to make meal, something that can be prepared in under half an hour, that tastes good and is nut, gluten, dairy, shellfish and egg free.

It sounds hard, ridiculously hard, especially when you try and make the food taste good, or the same as the original. But that’s how a lot of us live. I can’t really buy premade food from stores or fast food joints for fear it came in contact with nuts. I have to notify the servers that I have allergies in restaurants, and often it means either an extra half hour for us to get our food, or they mess up my order and I get nuts on my salad or something.

My allergies take time and effort to accommodate. I often risk a reaction just to be able to eat on the go, because there’s no fast, easy way to check for cross contamination in any store or restaurant right now. And just once, it’d be nice to watch a cooking show where someone like me wouldn’t literally die if they went on the show. Or risk dying to win.

Just once, I want to see allergies be accommodated by someone else, not just the person with the allergy.

Students with disabilities and disability rights advocates are among those angry — and feeling victimized — after the arrests in the college admissions and bribery scandal Tuesday.

“Stories like this are why we continue to see backlash to disability rights laws,” Rebecca Cokley, director of the Disability Justice Initiative at the Center for American Progress, said in a statement.

Federal authorities say that those involved in the bribery scheme took advantage of testing accommodations on the SAT and ACT meant for students with disabilities.

Why The College Admissions Scandal Hurts Students With Disabilities

Illustration: Ryan Johnson for NPR

It’s so annoying how Autism Parents™ say neurodiversity supporters want to erase nonverbal autistic people with extensive support needs.

No, we don’t.

We want them to be treated with the same dignity and privacy granted to neurotypical able-bodied people.

We want to protect them from having their embarrassing moments being turned into a voyeuristic online shitshow without their consent.

We want to protect them from people who don’t value their lives or their humanity because we know they can’t protect themselves.

But if all you take from that is “you’re just pretending this ‘side of the autism spectrum’ doesn’t exist” then that says you’re proving that you think it’s all about you and see your child as a prop to gain Internet Pity Points.

Some may call you heroes.

But autistic people can see what you really are– villains.

Braille literacy among the blind / visually impaired has actually gone down - and one reason for this is the ubiquitous presence of smart-screen devices like tablets and smartphones with voice-activated commands and audio feedback and the like but zero tactile feedback.

So like nobody really wants to invest in making proper braille tablets that offer tactile feedback as the primary display mechanism because well… It’s inconvenient for sighted people to produce something they aren’t inclined to use themselves. 

(And for clarity there are a few models of Braille Tablets - but to my knowledge they are all either A - Expensive as Hell, or B - Perpetually stuck in-development while the company tries to figure out how they can be more profitable.)

The potential inconveniences that audio-reliance has for blind / visually impaired people is rarely acknowledged or considered. Some of us are hearing impaired! Sometimes we want to read in areas where headphones aren’t appropriate. Sometimes we don’t want to have to pay $20 or whatever for an audiobook that has been copywritten and probably owned by a major media corporation. Or we want to read things that haven’t been made INTO audio-books without relying on awful robotic TTS voices. 

DEAR VEGANS

Hey! I wanted to educate you, since quite a few of you decided to take over my other (quite vague, to be honest) post about disabled people and (the food part of) veganism.

First of all I’d like to introduce you all to a feeding tube

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Here’s mine! It’s a jejunal tube, I have it because I’m unable to digest food through my stomach properly due to gastroparesis.

Next, here’s a feeding tube pump

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It is attached to a bag full of formula, that literally keeps me alive.

Lastly, the formula in question

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Any formula can be used as an example, but here’s the one I use currently. A broken down formula, Peptamen.

What’s in this formula, you may ask?

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Milk, and other ingredients derived from animal products.

Why am I making a whole post on feeding tube formula? Well, many people don’t understand how ableist the statement “everyone can be (completely plant-based) vegan” is. Everyone simply cannot be (a completely plant-based) vegan, it just isn’t possible. They do make specialty plant based formula (the most notable company is Kate Farms) however, these formulas start at $9 a carton, and can occasionally be covered by insurance, but unfortunately in my case, is not. Disabled people often have medical debt, so it would be quite rare someone could out of pocket pay $45+ a day on just one part of their medical plan. So what’s the other option? Whatever insurance will cover: Nestle formulas, Vital formulas, and other generics with non vegan ingredients.

Another non tube related point I’d like to share is that soy and tree nuts are among the most common allergies, and my argument against rice milk? It is a grain, made of (most commonly) brown rice, which people with gastroparesis have the hardest time processing.

So I’ll leave you with this point.

Next time you include how “all” disabled people can and should be plant based. Take into consideration disabled people with outside lifesources, not just tubes, but TPN, animal based medicines, etc…

Thanks

[Editing this post to add, first of all, thank you for spreading this, and also thank you to the kind person who added on! This post is about food specifically, not veganism in it’s entirety. We’ve heard too many times that “there’s always another option,” and seen disabled people be demonized for consuming animal products, that’s why this post was created ❤]

[Another edit! I really hope you guys aren’t like this in real life lmao, some of you have gross attitudes 😷 Again I’ll say (and have fixed Len’s post to make more sense) that this is about food. Nothing more, nothing less.]

Acknowledge nonverbal people.

My choir director John has a brother named Tom. Tom had some strokes that damaged his brain. He can’t talk and has a very hard time interacting with the environment, but he is completely competent and understands what people say to him. He walks with a walker and somebody has to steer him because he’ll kind of start in a direction and has trouble getting his body to turn a corner or stop.

And I noticed in church that people who weren’t John’s and Tom’s family would talk to everybody and kind of slide past Tom like they think he didn’t notice or care, so I went on a mission. I asked John what his brother’s name was and I started saying “hi, Tom!” in passing on my way out of church on Sundays. I talked to him in the same tone I talk to anyone else, no baby voice or anything. Tom gave no reaction other than a little twitch of his mouth. I wish I could say more to him, but after church is a time crunch to get out before traffic gets messy with people from one Mass leaving and the people coming to the next Mass arriving.

On December 23, 2018, I happened to catch Tom as he was going past the choir loft in front of the church, so I bounced on the balls of my feet like I’m apt to do when I’m happy and I said, “Hey, Tom! Merry Christmas!”

Tom looked me right in the eyes with this look of gentle happiness, like a dad looks at his kid, and gave a little nod of his head. I felt the merry Christmas he was thinking back to me. Then he passed me and the moment was over.

It was special because I know it was a lot of work for him to give me that response. He communicated with me as loud as words without speaking a syllable. 

John said any kind of response from Tom is a really good thing and to encourage him if you get one. I’m going to keep saying hi to Tom and wishing him a happy / blessed whatever-holiday-is-coming-up because he’s a nice guy and he deserves to be included in peoples’ ‘hellos’ and social stuff.

Nonverbal people (regardless of the reason why they’re nonverbal) will find ways to communicate with you if you give them the chance and the patience. Don’t talk through or around them like they aren’t there.

I hate that almost every single lesson I got about disabled people in media growing up was one of two things. 

1. Disabled people can do anything they set their minds to and overcome their disabilities, they’re just like everyone else!

2. Someone’s disability can really be an advantage.

Hell, I distinctly remember reading about all these famous intellectuals who all probably had ADHD, and it was supposed to be inspiring, supposed to make me realize I didn’t have a problem after all if all these people did just fine.

I can’t help but feel like these lessons drilled into people’s heads have led to abled people feeling no need to accommodate or make things more accessible and absolve them of any expectations to do so. Why would they need to help disabled people, they can do anything they set their minds to!

I’m sure it contributes to internalized ableism, too. Disabled people forcing themselves to do things that abled people can do when they really shouldn’t. Thinking they’re just not trying hard enough. 

I’m sick of it.

It’s so ironic how neurotypicals will talk over autistic people talking about autism to talk about their view of autism, and they always trot out a vulnerable autistic community member as their exploitation card. Then they get mad when we tell them to shut up as if we’re supposed to shut up for them.

It goes like this…

Autistic person: Raptor hands and hand flapping are super cute! I hope all you autistic people out there are having a great day with your new fidget toys and weighted blankets! :D

Neurotypical person: Shut the fuck up! That’s not real autism! I live with real autism! It’s your child punching themselves in the face until their retinas detach and smearing shit from their diaper on the wall! Autism is the worst thing that ever happened to me. Fuck you! Stop glorifying a horrible thing!


Are neurotypicals capable of grasping that autistic people spread autism positivity specifically to counteract the stimagizing rhetoric we’ve had to hear about us for decades?

We don’t pretend the ugly hard parts of autism don’t exist. It’s just we’ve heard it all now and we’re trying to share a different side of it. If your family member is having extreme behaviors, it means they need something you haven’t figured out how to give them. You may never figure it out, but you should keep trying instead of slapping down the community trying to support your autistic loved one.

Autism is more than misery, self-injury and meltdowns. If that’s all you have in your house, you need to change the environment, look for medical issues and stop exploiting your loved one to silence people.

Autistic activists are trying to get your loved one seen as the human being they are instead of the list of problems you use as your only descriptors of them. 

The world would be much better for all autistic people if autistic voices were centered and prioritized. Until that happens, I’m going to keep talking, typing, singing, whatever it takes to get the message out that I AM FIGHTING FOR ALL AUTISTIC PEOPLE OF ALL ABILITIES TO BE HEARD.

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.

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.