This Is What They Think: Protesting Autism Speaks

The ASAN-Atlanta chapter recently protested an Autism Speaks GA 5K Run.

“Would you like to hear what autistics have to say about Autism Speaks?”

They kept walking. They said no. They flipped us off. They told us to go home. One person told us they knew everything about autism already because they had autistic children and had “full acceptance for them.” If one is running or walking for an autism cure, it means you only have acceptance of what you want your children to be. You're accepting of a vision, not the people right in front of you.

This was with the exception of about twenty folks. They took flyers, which I really hope they kept.

An Autism Speaks staff member approached us and started condescending to us about how much Autism Speaks *actually* helps autistic people. The person condescended and acted like we did not have a complete story about Autism Speaks. The person also completely forgot Autistic adults existed in their spiel. “It's so great that you're out here, Autistic voices are integral to the conversation about autism!” Sappy and dripping with fake admiration, forgetting advocacy is not cute. Autism Speaks also really is not that interested in autistic voices. They have no autistic leadership anywhere. Their only autistic member of prominence, John Elder Robison, resigned in 2013.

Finally: “I'll keep on loving,” the person declared, as if we did not also want the best for their children. As if we did not love anyone or anything.

At least it showed that we made somewhat of an impact. They wanted to placate us, lower our guard, not come back next year.

***

The children broke my heart the most. One person's child tried to look at our signs. The parent physically turned them away.

This is what many of them seem to think. Autistics cannot think for themselves. Autistics cannot possibly disagree. They do not seem to want their children to grow up with the hope for anything other than a cure and being “indistinguishable from peers.”

To look at our signs and have them realize there are autistic adults who share a neurotype and who are protesting the event that their parents are at would be heresy. To start accepting themselves would be treachery and, to many, the appearance of giving up (it's really not). Many of these parents think that a cure is what society needs to do to help autistic people. They appeared bewildered and angered at our presence.

I really think most of these people do want the best. But they've been told over and over again, by society and since 2005 by Autism Speaks: Cure autism. At the least, make them indistinguishable from peers. It's a disease. A burden.

I flapped at their children. It was the only way to say, “I am like you and you are okay as you are.”

***

Other Sources on Autism Speaks

• The Caffeinated Autistic's Masterpost
• ASAN & other disability rights groups Joint Letter to AS's Sponsors
• Compilation of Anti-Autism Speaks Posts by Boycott Autism Speaks

On this Transgender Day of Remembrance

On this Transgender Day of Remembrance, I consider the intersections between the disabled and trans community.* I think about how we both hold days of mourning and remembrance for our murdered brethren. I think about how so many of us are disabled and trans. I wonder if any of the names are the same on the collective lists of the dead.

I think about how this is one of the first times I openly am writing a piece about trans rights... despite the fact that I am multiply disabled and agender (thus trans) and queer. Maybe because it's scary to be so many identities at once. Maybe because the environments surrounding us are so toxic...

On this Transgender Day of Remembrance, I let myself be trans (usually I worry – am I trans *enough?*) I let the heartstrings flow and I let the feelings grow. I am autistic, with other disabilities. I am trans. I am queer. Maybe it's time I let this community become my own, too.

So I can remember and mourn with the rest of you.

I mourn. 

I read the names on the TDOR site, so many of them trans women of color, with the same shaky feeling that I got reading the list of the disabled and murdered people at the disability day of mourning. I am, I am, I am trans, I read the list of people that can carry on no more so activists carry on for them and fight. It is in my hopes and dreams that both lists start to get shorter.

For now, I mourn. 

---

*This is not to say that other intersections do not exist, of course. Especially since so many of the murdered are trans women of color. 

Re: Autistic boy, 11, kills himself

Re: Autistic boy, 11, kills himself

I phrase it that way. I don't phrase it the way the article did. Blaming the autism and ADHD for suicide. This was a boy who befriended a locust in a tree. His mother said he felt like the adults at his school didn't care and could not make connections in his class. Had a gift with animals.

***

Isolated and miserable, I managed to find refuge in certain places. The art room, where the art teacher encouraged me to explore with sharpies and gel pens and acrylic paints. The debate room. My 10^th grade English teacher's classroom. The scene shop, where I would frenetically sweep and clean the entire area after school.

Unlike Shane Laycock, I had supportive adults in my high school. I don't know how, considering the story told by so many of us of being shunned by even the adults who are supposed to care. I don't know what would have happened without them.

***

It was never autism's fault.

In middle school, I arrived with a set of liberal opinions from one of my parental units at a private school and set the school upside down. At a certain point, curiosity about the new student turned into vitriol. It was never autism's fault. The way they treated me created a small, scared, desperate teenager by the time I hit high school. Failure to understand difference is at fault.

***

I spent most of my time in trees, befriending neighborhood cats, playing with my gerbils, reading, or lost in my head. I once climbed a 40-foot-tree. I lived in fantasy worlds.

Biking is still my outlet, speeding up and down hills, feeling the wind in my face.

***

He said he felt like the adults at his school they didn't care. This is the experience of so many like us, shoved aside and written off and turned away. Not me (in terms of adults), but so many of us.

How can we make sure that people start to care? That people care about people like us? It was never autism's fault. It is a society that teaches difference is failure, that autism is tragedy, perpetuating the constant isolation of autistic people and other people with disabilities.

And when talking about this...

When talking about this...

Talk about a boy who walked barefoot and befriended locusts... 

Talk about a society which chose to isolate him, talk about a society that failed to accept him. Do not blame him or disability. 

Yes, in a perfect, non-ableist world, there would still be forms of disability. Certain things are disabling. But to turn away from the role society plays in perpetuating isolation would be negligence. 

Defining Ableism

Defining Ableism

Note: This is U.S.-centric

***

Sometimes it feels hard to define ableism when it is all around us and everywhere and so much more than language. Language contributes to, and perpetuates, ableism. Ableist acts can include language.

But I keep thinking of the time in Fall 2013 when I started having seizures from a medication interaction. The seizures were atypical. No one knew what they were, least of all me, too out of it to tell that something was actually terribly wrong.

What I most vividly recall is not even the night I had my worst episode, but the day after, when my friend and I talked about it and she'd been terrified to call 911 because of the way I was presenting. Because I was slurring incoherently like I was having some sort of non-neurological or physically based episode, and she knew what happens to people in the psychiatric systems if they go wrong. She knew the way I was presenting would land me in the psych ward.

More drastically, I think of the man who ended up in the mental health system during a crisis, and the state of Maine put his cat down and sold his home.

When we have to be so afraid of our psychiatric system...? That's the result of ableism.

Sometimes I think about all the dead and murdered people too, like Dustin Hicks, a recent one close to home. My chapter just had to write a statement on it. The news outlets declined to even reply to my encouragement to publish all or part of the statement. One news report discussed his mother and reasons why she might want to kill him. None mentioned that he deserved to live, or that his death was a tragedy. We know almost nothing about him.

When we have to issue statements over and over again urging people to report responsibly and call our deaths, not our lives, tragedies? That's the result of ableism.

I think of all the various intersections we have between other identities, too. We are not a monolith. I think of the many, many people of color with disabilities who face racism and ableism, sometimes with deadly or injurious consequences. I think of the #FreeNeli campaign, and how long it took many of us white folks to start tweeting on it after the initial call for tweets. I think of Neli himself, unjustly incarcerated for being black and autistic, in isolation. The governor finally did issue a conditional pardon.

I think of Kayleb Moon-Robinson, one of the many students of color and students with disabilities disproportionately referred to law enforcement. An eleven-year-old charged with a felony. The school to prison pipeline is real...

I think of those of us who hold many identify facets, like being LGBTQ+, a person of color, a religious minority, as well as being disabled.

When we have those intersections meet in a dangerous way, amplified by multiple marginalized identities, the ableism and other -isms and -phobias become intertwined, and not the result of purely ableism. These intersections matter.

I think of how someone got kicked out of their house by their roommates for being autistic.

I think about the story they ran on Minnesota and its group homes, the people trapped in the facilities.

I think of history, too. I think of the sordid history of locking people with psychiatric disabilities, intellectual disabilities, and developmental disabilities in institutions...

I think of the nasty history of eugenics. (The .pdf is American and German history of eugenics only, as I lack a college library to find the other physical sources. Also, there's a typo at one point where I meant to say “Indiana passed the first sterilization law in 1907.”). How it affected so many with disabilities (and other intersections).

I think of how nowhere was physically accessible, how Ed Roberts couldn't go to school unless he lived in the infirmary.

I think of activists crawling up the Capitol steps to protest and demand the ADA's passage. Don't let the black and white photographs in the coverage of the Capitol Crawl let you think that this was long-gone history. We only just hit 25 years of the ADA.

I think of the long, long history ableism has. Ableism is not new.

***

Could I go on? Yes.

I fear being too depressing. I fear a lot of things. Mostly, I am sometimes frightened of the world.

We could stand to be gentler of people still learning the new words that change so much. Ableism is far more than a list of words and we need all the good hearts we can find. Clumsy language on the part of someone who is trying (and who may have communications-based disabilities!) is something to be less concerned about than the dead and wounded around us. Clumsy language on the part of someone who is trying should, perhaps, receive calling in, not calling out.

Ableism seems insurmountable, and there will never be a great sweeping moment where we crush it entirely. But I think we're making a dent. We've come 25 years since the ADA. Seattle has some crappy curbs that Disability Rights Washington is taking them to task for. Ableism still goes on and on. But we're making a dent. The largest non-profit in the nation dedicated to eradicating autism had its donations drop. Their president is resigning, though this may have been a planned move. We are producing documentaries of our pain and sorrow, of our challenges and stories, of our hopes and dreams.

We have people among us becoming lawyers and professionals and influencing that way. We have others in grassroots advocacy and policy advocacy. We have those whose advocacy is for themselves only, fighting to survive and be heard and respected (and that's okay). We want our brethren to survive. 

Autistics Speaking Day: Building Hope

Autistics Speaking Day: Building Hope: Kit Mead

My first experience with neurodiversity was something built gradually from the ground up. It built itself around social connections first, and someone driving me to a public lecture on autism and neurodiversity. Gradually reaching out and pulling together a community. It was the beginnings of what would be the disability student group on campus and my ASAN chapter.

It was a revelation, to say the least. I learned about an entire culture. I myself fell into it hard and fast but the community took a while to build locally.

I am proud of what everyone involved in all that has accomplished.

***

The Internet has always been my second home. I started an “autism blog” in 2013. I had been on Tumblr before, but not knowing about neurodiversity and mostly reblogging things like cats.

Autistics have a lot of pain to work through, which I have seen flashing up all around me. We have a lot of trauma and ours is the history of a group maltreated. Having pain to work through is fine.

We do have a community, diverse among its interests and identities. We have more people discovering how their brains work every day. It is important to cultivate a disability identity in people carefully and with kindness. Autistics have a lot of pain to work through.

***

Autism is a neurotype, not a political belief system or other set of beliefs. We share a neurotype. We are diverse. We have pain. We have different opinions. I've seen us come together on a lot of issues and part on others, recent though my addition to the neurodiversity movement is.

***

The reason I joined neurodiversity was because someone found me and realized that I could contribute something. They helped me learn, slowly, to create an identity out of disability. I read everything I could get my hands on. I came into neurodiversity when the community was speaking out even louder than ever against groups like Autism Speaks. I embraced it.

I was fortunate. I managed to pick up what words to use and had some talent with writing that lent itself well to blogging. I had someone patient to teach me. I joined neurodiversity because someone helped bring me into it. I have hopes for this community. In some areas, I fear for it. The splits seem wide in many areas.

***

There are many types of advocacy and activism.

For instance: resistance can be self-advocacy. Self-advocacy can be resistance.

If you write just one blog post, you have contributed. If you're not on the front lines and doing spitfire activism, and are quieter in the background, you have contributed.

Some people would argue that “quiet activists” do no good, but I disagree.

We have room for all kinds of activists and advocates in this community. Some are newer, and perhaps we could learn to handle each other more gently.