autistic activism

please reblog if you post about:

autism 

spoonie life 

chronic illness 

self help for any of the above 

stimming 

animals 

ableism & disability activism 

and anything you think might be relevant to any of that stuff! 

[no nsfw please] 

[i’ll follow on my primary, this is a secondary blog]

Hey so April’s coming up so I thought it’d be good to have some activities to do! I’ve seen other people do these (most notably for me @uniqueaspergirl​ had one that I did a few of last year!) and thought I’d set one up!

Under the cut is a list of the days (also listed in the picture) and descriptions of what each one is because a few words aren’t always the easiest to understand even when you wrote them.

I would like to say first though that - despite me keeping the descriptions of each day mostly positive, negative submissions and additions are absolutely accepted. Everything isn’t sunshine and daisies. Most of the things are general enough that they’ll apply to anyone, but if one doesn’t work for you feel free to treat it as a freebie!

Submit by submitting to the blog directly, tagging us ( in the @ kind of a way) or by tagging it #walkinredinstead (which I checked, it’s empty) and I’ll post and reblog as many as I can!

Keep reading

Nothing About Us Without Us

Nothing about us without us is an autistic led initiative which aims to challenge misconceptions surrounding autism and provide information to any who may be looking for it. Much of the current conversation surrounding autism does not include or value the voices of autistic people. Our goal is to change this by promoting autistic voices above all others, as evidences in the community that is involved in the project
We aim to be as intersectional and accessible as possible, including autistic people of marginalised identities in the creation process, and collecting testimonials from across the spectrum.

In keeping with the wishes of the autistic community, this project uses identity first language (autistic person). Additionally, we will never knowingly endorse Autism Speaks or any of its affiliates.

The project leader (Eli) is from the UK, therefore a lot of spellings will be British.


If you would like to contribute time or a testimony, please email Eli at nothingaboutuswithoutus.autism@gmail.com

As an alternative to the controversial “Light it up blue” campaign, why not support actual autistic individuals by lighting it up gold.
For more information check out
Facebook.com/AutisticUnion and Facebook.com/LIUG.Resources

And to help support my work you can set up a monthly donation at patreon.com/irishwolfproductions.com

@staff
Intersectional Autism

(or, It’s More Than Just Inclusive Advocacy)

Brief note here: Intersectionality was originally coined Kimberlé Crenshaw to describe how racism and sexism affect black women. I am using the principals she described, as I understand them, and applying to autism. Do yourself a favor and look her up, because she laid the foundation for the type of advocacy that we need within the autistic community. Also, if I mischaracterize Crenshaw’s views, please correct me! I’m still learning!

I’ve see a lot about inclusive advocacy within the autism community, and I’ve seen a lot about intersectionality within the autism community. These are two very important aspects of advocacy and activism, but they are not interchangeable.

Intersectionality is not just about including people of other marginalizations, and to treat it as such undermines the entire principal. 

Intersectionality is often describe as some variation of understanding that people often have multiple axis of marginalization and that those can interact with each other in very unique ways.

For example, the fact that I am autistic and a woman means that I am going to have unique challenges that other autistics do not have, and I am going to have unique challenges that other women do not have.

And that’s super, super, important, right? Of course it is! It’s all not quite what intersectionality is about, though, and when you leave the rest of intersectionality out, you are leaving the most important aspect out.

Intersectionality isn’t just about the fact that these axis of marginalization interact, but also that they have to interact. Not just that, but you cannot separate the axis of marginalization from you.

What does that look like in terms of autism?

Yes, I experience ableism because of my autism and yes I experience sexism because I am a woman, but those things do not happen as distinct, localized things. When I experience marginalization it isn’t just one or the other, it is always both. I experience ableist sexism and sexist ableism. Not one or the other.

Why is that? I mean, if someone says, “what do you know, you’re just a woman,” how is that ableist if it is obviously a sexist comment?

Yes, there are overt comments like the one above that are very obvious, but that’s not what we’re talking about here. We are talking about pervasive social issues. They key to understanding this in my opinion is to remember that sexism and ableism, are both systemic things. They are a very subtle part of society, and most importantly they are implicit parts of society.

Most people in society pick up on these implicit, systemic biases whether or not they intend to, and it shows in how they interact with the world around them. With ableism it means everyone has a very subtle tendency to pity disabled people, and to infantilize them. With sexism that means a very subtle tendency to view women as emotional and unstable.

When someone interacts with me, an autistic woman, it means they are always going to be influenced by the fact that I am autistic and the fact that I am a woman. There is that subtle social bias towards infantilize me and to view me as emotionally unstable.

Not one or the other, but both.

When we talk about intersectionality and autism and in making our community inclusive, we have to understand that we cannot separate axis of marginalization. Autistic women are always going to face sexist ableism and ableist sexism. LGBT autistics are always going to face ableist homophobia and homophobic ableism. POC are always going to face ableist racism and racist ableism.

And yes, that means a poor lesbian, Islamic, Latina, transgender, autistic, for example, is always going to experience a combination of classism, homophobia, Islamophobia, racism, transphobia, and ableism.

Any time there is an axis of marginalization, they are going to crisscross and interact in complicated ways, and while overt marginalization may directed at one or the other more obviously, the systemic nature of these issues means it is never going to be just one thing.

That’s the point - it’s subtle, it’s not obvious. That’s just the nature of pervasive, systemic issues, and that makes it hard to fight.

As autistic self advocates and neurodiversity activists we have to ask ourselves if we are okay with simply being inclusive. As a community, we have to ask whether or not we want to be progressive.

If we really want to be an inclusive community, we have to be intersectional. We have to recognize that not only do we face marginalization along different axis, but we can never entirely shake that those subtle influences that are there, no matter how overtly an -ism is directed at us.

We owe it to ourselves, but especially to those who face more axis of marginalization that us.

please be aware of all the ways autistic people are actively dehumanized, including

-acting like it would be better off for everyone if we didn’t exist

-being trained to obey, and punished for saying no

-using ‘worked with children with autism’ in a similar way to ‘worked with dogs’

-assuming we don’t have meaningful friendships that aren’t born of a neurotypical pitying us

-assuming we don’t have romantic relationships

-assuming we don’t have sex drives

-debating if it is ethical to allow autistic kids to be born

-denying the existence of autistic adults

-debating whether it is better to have an autistic child, or risk your child dying of a life-threatening disease

-silencing our voices in conversations about us

-treating us like a science experiment

-comparing autistic people to animals

-using terms like ‘put out of their misery’ when describing our murders

-justifying our abuse and torture

-etc, etc

I’m not sorry that my disability annoys you

I had a discussion with Someone the other day about accessibility at amusement parks. He complained about how disabled people didn’t have to wait in line or could get two rides in a row. He said going to an amusement park wasn’t something you had to do, so if you weren’t able to follow the rules that everyone else does, you should just stay home.

Having a disabled sister and being disabled myself, I really appreciate how places such as Disney World makes the parks accessible for both physically and mentally disabled people. My sister is not able to wait 30 minutes to get in an ride. She has attention deficit disorder and autism which makes waiting in line with lots of other people difficult. There’s only a few rides she’s able to try, and she really enjoys it.

When you are disabled it could be a huge challenge to wait in line. Being in such a crowded space for a long time can cause panic and distress. Getting in and out of a ride can take a lot of time if you are in a wheelchair or similar.

This kind of ableism is hurtful and even harmful and people with disabilities. 

And no I will not stop doing things I enjoy because my disability annoys you. I didn’t choose to be disabled but ignorance is a choice.

I NEED HELP TO STOP LIGHT IT UP BLUE AT MY SCHOOL!CALLING FELLOW AUTISTICS! ALISTICS MAY AND SHOULD REBLOG!

So, I’m very close to possibly getting rid of Walk Blue at my school next year. I’ve sent an email and it was forwarded to a college of the women who is in charge at our campus. Apparently she has some kind of background in disabilities having to do with developmental disorders. If anyone has talked to people who’ve been in the field and haven’t heard about what Autism Speaks does, you know that sometimes it can be hard to get information across, due to the “Well, I’ve studied this and that and got a degree and worked with children. Why wouldn’t I know?”

And I think the people who organize for my school are good people who do want to do good. I sent another email telling them that I might be able to send them to some other autistic peeps if they wanted more people to send feedback, instead of just me, so they can see our reasoning for #RedInstead.

We tend to tell each other things we might not tell caregivers or teachers, and I told them that. People who actually have autism, and who have been exposed to the background of Autism Speaks, usually have a completely different perspective on what’s going on due to how much it affects us. But I need people to volunteer if they answer back. Who would be comfortable sharing their stories and helping to educate them on what this is about, and why they should get rid of their Walk for Autism Awareness next year?

If you’re not comfortable, can you please at least reblog it? This means a whole lot to me. I’m not saying you have to, but it could get to someone who wants to share that way, and that could make a big difference. And through this they might spread the word to other campuses and to their colleges. It’s a chain reaction. If they end up saying yes, to offer to listen to us, will you help me start that reaction?

I wanted to ask you this question specifically because I think we’re in similar situations. I’m applying for a four month intensive that will give me a Developmental Disability Counselor certification and a fast track to employment in this field. The only catch is that I will have to take a course called “Introduction to ABA”. I realized that in order to get to what I really want (changing the system from the inside and being able to truly live “Nothing about us without us”), I’m going to have to submit to the ABA course and recognize that it’s probably not the venue to start explaining why it’s bad. I was also advised to use “Asperger’s” on my application (since disclosing is actually my selling point in this situation) instead of “Autistic”. 

The actual question is: Is it OK for me to do these things? I feel like I’m betraying my community by doing this, but I do have my eyes on the prize, and I realize that in order to get through the door, I’ll have to make some sacrifices. My adviser told me that once I’m employed there will be room for me to start improving things for us, but do you think the community will accept that I’m doing this for the time being?


Oh gosh, I love this question so much because it deals with a whole lot of really big things that are also really hard things.

When it comes to ABA, you are right. You have to get through the class in order to make the changes you want to make. Without, you are excluded from the positions of power that allow you to affect the most change.

So take the course. Don’t just take it though, excel in it. Be the best student you know how to be. Ask questions - not to be subversive or discredit the practice - but to learn everything about it that you can. It is perfectly valid to learn the ins and outs of ABA so that you can undermine it.

It is so exceptionally important that the people who have been abused by ABA are the people that lead to fight against ABA. But having working knowledge of the practice from the other side is another important aspect of that fight.

Pathos and ethos are equally important in that each has a role in affecting the people around us. Some people are going to be swayed by the emotionally charged appeals of those who have suffered abuse, while others are going to be swayed by the appeal to authority. Those of us who have been through ABA are the emotion, those of us who learn it are the authority.

When you put those two together, you have the most universally convincing argument possible. I wish we could just take people at their word, but I’m also a realist, and recognize that in the world we live in, we need both voices.

Even so, there are ways that you can be subversive while also attending the classes. Let’s take person first and identity first language, for example. Most people are going to push for person first. You can say that you prefer to use autistic, which is the standard used by the self-advocacy groups like ASAN.

If anyone calls you on it, you have two routes: 1.) state that APA guidelines allow for identity first language or that 2.) if they would like you would be happy to provide a citation for the use of identity language. In fact, it is not exactly uncommon in academic publications that use identity language to see a citation for a study on the need for identity first language. I suggest adding one of the common citations for that into MS Word so you can insert it easily in your preferred (presumably APA) formating.

You can also reframe questions in ways that don’t make accusations but do get other students thinking. Instead of saying, “ABA causes PTSD,” for example, you can ask a questions like, “I read that some people that went through ABA were later diagnosed with PTSD. Obviously ABA does what it is supposed to, but how do I address parents’ concerns about harmful effects? Are there any studies you can recommend regarding long term effects?”

I have yet to have anyone do anything other than blow that question off, but honestly? That’s all you need to start changing the minds of people who are open to change.

Keep yourself educated on studies in other types of therapy. CBT has proven effective, and so has putting the parents through “Awareness” training (put another way, ABA to make the parents understand autistic perspectives). Seek things studies out, and if you have the opportunity use them. Have to write a paper on ABA? Rather than frame it as ABA is bad, frame it as self-advocacy groups have pushed back against ABA, do their arguments have any merit? Cite long term studies on ABA or the lack thereof, and frame it as, “if the advocacy groups are ever going to be onboard, these studies need to be done to address these concerns.”

This, btw, is pretty much how I handle all of my psych classes. Rather than assault the institution directly, I ask questions that I know are loaded or unanswered and leave it at, “it seems prudent to address these concerns.” This is especially important with ABA because while it is awful for many reasons, it is effective. Like, it does what it claims it does. So don’t even try, at least not in that setting. But that doesn’t mean you can’t be subversive even as you toe the line.

As for the whole Asperger thing, I wouldn’t personally do it because I’m that girl who would dare someone to turn me down on the basis of my autism, but I absolutely do believe that when you’re dealing with the hierarchy of stigma it is okay to call yourself an aspie or an HFA.

The simple reality of it is that people who want to work in that field are a dime a dozen. There just is not a shortage of people. In order to Change the World from the inside, you have to play by their rules, at least for a little bit. If you don’t, they will just ignore you.

Put another way, respectability politics of any kind is bullshit. But I have no problem at all playing respectability politics to subvert an institution.

There’s a theme in all of this that I want you to consider: You are using their tools against them. That is so, so, powerful when fighting for marginalized individuals, and there is nothing wrong with it. It is and always has been the primary strategy of subversives throughout history, for good or bad.

I have a lot more thoughts on this, but this is already long so I’m going to call it here. Keep your eye on the long fight. Let those of us who can fight the now fight. We need both.

autism activism hits me in a way that not a lot of other things do. it’s extremely personal to me in a way that very few things are.

i wish we were treated like people. i wish our activism reached outside of the autistic community more and in more ways than a performative few posts reminding other neurotypical people that they love the autistics

i wish that people did more work to normalize stimming that wasn’t quietly pressing buttons in your pocket or spinning some dinky toy for a while.

i wish we could exist as we are in public. i wish being visibly autistic was acceptable.

i wish that i could have my sensory needs respected without invasive questions about why.

i wish i wasn’t socially shunned by my neurotypical peers when i started to be more open about the symptoms of my autism.

i wish that “weird” really and truly didn’t mean bad.

i wish i wasn’t trained into eye contact like a dog being trained not to shit on the floor.

i wish “special needs kids” actually got approached and got friends because they were actually represented on a cartoon on tv and the neurotypical kids realized that neurodivergent people have feelings and can be lonely.

i wish that autism wasn’t “uncomfortable”, or an uneasy topic, or too alien to write because of the utter lack of any exposure to any autistic people or autism activism.

i wish autism wasn’t forced into invisibility because of neurotypicals that are uncomfortable with who we are.

Nonverbal autistic people who need lots of daily help and can’t make their communications understood are important too. 

You won’t find me lording above them. I’m behind them, amplifying their presence by shouting at the world to acknowledge their humanity and protect them from harm. 

Their lives are in the most danger from caregivers. I will not let that reality be forgotten. I will continue to yell, scream and make noise to ensure our most vulnerable community members stay included and relevant. 

Look I don’t mind neurotypical people using and normalizing fidget spinners and slime and other stim toys. It’s actually good that they’re now becoming more readily available because of it! I just wish they would acknowledge that they aren’t the ones who actually NEED them.

Like I’m seeing more and more people (not even necessarily nts) starting to treat stim toys like an annoying/dying fad and this is… actually kind of upsetting? Fads and trends die but unlike most fads autistic/ADHD people are still going to need them after everyone else loses interest…

I shouldn’t have to explain that it’s kind of shitty to use something an autistic person needs to function only to insult it and act like it’s unnecessary garbage after you’ve grown bored of it.

Following in the Path of my Hero

(or, When I Grow Up, I Want to be Just Like Amythest!)

I want to start by explaining who my hero is in this context for those that don’t know. Amythest Schaber, known as @neurowonderful on Tumblr, is a self-advocate and activist who was pivotal in two important aspects of my life.

Like many of my own followers, Amythest’s YouTube series, Ask an Autistic, was a significant force in my self-acceptance. The second aspect, and perhaps more salient to this post, is that Amythest provides a blueprint for autism and neurodiversity activism; a blueprint that I would come come to define myself by.

The way I choose to define myself, my identity as it is today, was seeded by my aspirations to be the activist I saw and continue to see in Amythest. Put another way, when I grow up I want to be an activist and help people the way Amythest helped me.

This aspiration led me to create this blog, to attend university nearly twenty years after I had given up on the idea, and it led me to my first published piece as a professional writer - a life-long dream that until recently had been little more than idle fantasy.

Yesterday was a big day for me. I stepped firmly out of the world of self-advocacy and into the world of activism. So what changed?

Well, yesterday I had a meeting with Dr. Hudson, the director of the Student Center for Diversity, Equity, and Inclusion at my university. We talked about autism. We talked about autism awareness. We talked about autism acceptance. Most importantly, we talked about how to position this school as a leader of neurodiversity acceptance, inclusion, and most of all, accessibility.

Not accommodation - accessibility.

As it is right now, there are two events at our school that deal with autism. One focuses on autism awareness the way most people mean it, and one focuses on autism awareness the way we as a community mean it. Dr. Hudson wants to bridge the gap between the two, and he has asked me to be the student that does that.

Dr. Hudson has been seeking ways to expand on the April autism awareness campaigns into a year-round program of neurodiversity acceptance. This program is not meant to be token events, but rather the basis for what will become University mandated policy in neurodiversity accessibility training for professors, administrators, and student facing employees.

I have been asked not only to create a program of events spread throughout the year, but I have been asked to do it in a way that can transition into standardized policy.

How does this work?

Let’s take the issue of closed captioning. There is no requirement for professors to provide closed captioning on anything unless the Office of Disability Services informs the professor of formal accommodations. But why? Closed captioning doesn’t hurt anything, and it could easily be the difference between a B and an A for a student that needs it - perhaps not enough for them to request accommodation, but why shouldn’t they be able to fully understand the video?

I address this issue, perhaps, by presenting a lecture to students and faculty on the benefits of closed captioning for disabled and neurodiverse students. I make the argument that close captioning should be standard; that professors should only be using videos that include closed captioning and it should be turned on be default. Maybe I cite studies, maybe I include interviews of autistics or HoH/Deaf students ruminating on the differences between classes that provide it be default and those that don’t. Maybe some professors take this to heart, but most won’t.

After introducing these things, Dr. Hudson takes them to the administration. He shows them how the professors that listened were able to make the necessary changes, and makes the argument that it should be policy.

To be clear, Dr. Hudson has a lot of power within the school to address these specific issues. His job is explicitly about making this school accessible to underserved demographics in this city - from working class people to undocumented immigrants (we are a sanctuary school!), to physically disabled students, to neurodiverse students.

Let me repeat that - Dr. Hudson’s job is to make this school accessible. And believe me, he understands just what the significance is by saying accessible instead of accommodating. Best of all, when it comes to burden of proof required for him to change accessibility policy, I get the impression the bar is low. As long as he shows that it will probably help people, he has the power to make it happen.

And now?

I am the student responsible for bringing a broader neurodiversity awareness, acceptance, and accessibility to this school. I talk a lot about autism because that is what this blog is, but my role at school is about all neurodiversity. Depression, anxiety, psychosis, developmental disabilities, communication disabilities, learning disabilities, everything.

This is the work I wanted to do professionally after earning my masters degree or PhD. Instead, I start next week - as freshman in my second semester of undergraduate studies.

My wife, @paxardens and my partners @cassandrasimplex and @vulcanfeminist, my friends @alexithymia42, @elliottiguess and @stumble-tumble-bumble… they all played a huge role in helping me come to understand myself, love myself, and strive for more.

My activism? The way I want to approach bringing acceptance of neurodiversity and more importantly bring accessibility to neurodiverse people? That is powered by the support of my family, the women from my regular tea party that are my chosen family, and my friends; but it is built with the blueprint from my personal hero, Amythest.

I can’t wait to see what the next four years bring, and I can’t wait to share it with all of you. Whatever journey is ahead, it starts today; today, I follow in the path of my hero, and I couldn’t be happier.

6

ASAN Vancouver’s protest at the 2016 Autism Speaks walk in Burnaby, BC.* Part two! Photos by Marvin Schaber :)

[Photoset description: A series of six photographs taken of the attendees, the colourful signage, the flyers we distributed, and the location of ASAN Vancouver’s protest against Autism Speaks. We set up alongside a paved path that the Autism Speaks event used as the walk route.

Some of the signs say, “Listen to Autistic adults”, “Got questions? Autistic adults are the best resource for parents of autistic kids”, “Autistic rights are human rights”, “Protest against Autism Speaks”.

Two visible flyer titles say “What’s the Problem With Whole Body Listening?” and “Neurodiversity”. End of image description.]

*Correction: No brain, it was not. It was in Richmond this year.

Protect nonverbal autistic people who need lots of daily help and can’t make their communications understood.

They are the community members I think of the most when I’m engaging in autism rights activism. They are the community members who are so often exploited, dehumanized and only given mention when caregivers complain about living with them.

Our most vulnerable community members matter, too. They matter to me, they should matter to everyone. 

I’ll say it again– you won’t find me yelling from in front of them. I’m either behind them or among them, amplifying their presence and reminding people that they are human beings with thoughts and feelings just like everyone else.

Dear nonverbal autistic people who need lots of daily help and can’t make your communications understood– I see you and I care about you.