autistichoya

Autism Speaks is the organization behind the “Autism Every Day” public service announcement in which their former vice president stated that she considered driving off of a bridge with her Autistic daughter, and only refrained from doing so because she would also have had a non-Autistic child waiting at home; she made this statement on camera with her Autistic daughter in earshot in the room on screen. Autism Speaks is the organization behind the “I Am Autism” public service announcement in which an insidious voiceover claiming to be “autism” detailed all of the tragedy and horror and bad consequences of autism.

Autism Speaks regularly issues propaganda in which they say, “The rate of autism is higher than the rate of cancer, childhood diabetes, and AIDS combined,” which compares a developmental disability to diseases. Their propaganda states that “1 in every 88 children will be diagnosed with autism.” When we turn eighteen, we don’t magically become non-Autistic. 1 in 88 people are Autistic. Autism Speaks would have you believe that we are living tragedies waiting for the day when we can be cured, when nearly every Autistic person I know does not want to be cured and does not believe in this concept of a cure. Curing me of autism conjures the same mentality as the idea of curing me of femininity; it’s so fundamentally perverted and disturbing that words fail to describe how appalling and horrific the idea of severing an essential part of our humanity is to us. No, being Autistic is not sunshine and rainbows. But it is as much a part of who we are as our other attributes.

Among the Autistics who oppose Autism Speaks’s anti-Autistic agenda are people who experience significant disability, people who have been institutionalized, people who have been educated in segregated “special needs” classrooms, people who have their own Autistic children, people who do not speak, people with multiple disabilities, and people who have faced extreme discrimination and prejudice against the disabled. Yet we are precisely the people whom Autism Speaks fallaciously claims to represent, and there is a large and growing number of us, Autistic people, who are vocal and adamant about our contempt for Autism Speaks.

ugh words whateva

I’ve recently learned that there are a few words I say all the time that are offensive to some people such as “crazy” “dumb” and “lame.” These words can be offensive because they represent long-standing stigmas against mental illness and disability. When people use these words, it can suck a lot for disabled people (/people with disabilities) to hear because it can be a reminder of how part of their identity is stigmatized in society and equated with things that are negative, upsetting, or uncool. This was surprising for me to learn but I think it makes a lot of sense. since I use these words so much and sometimes I feel they so encompass what I’m trying to say, I took a little time poking around on the internet slash my brain to come up with some alternative adjectives that convey the vibes I’m tryna give when I use words like that, but without the ableist connotations. here’s some ideas:

-fricked up

-turdly

-bunk-ass

-wack

-funky

-bleak

-gross

-bogus

-shitty

-gnarly (*or even better is the variation ‘gnarls barkley’)

-sketch

-skeevy

-unbelieveable

-rude

-vile

-terrible

-the worst

also I found “ill-advised” on thesaurus.com but I thought maybe that one could possibly be sort of shitty too because of the word “ill” being used to mean both sick and wrong/bad?? 

anyways, I also found a blog post that explains all of this much better than i can and also has lots of great alternative insults/adjectives so take a gander yall

youtube

Since being challenged to participate in the ALS ice bucket challenge by Ed Neumeier and Saniya Khullar on separate occasions, Shain Neumeier and I took them up on that offer today on what turned out to be a very conveniently hot and humid D.C. Labor Day. Our ice went into the trees and shrubbery to give the plants some moisture. 

We donated $100 to the ALS Therapy Development Institute, which amazingly includes people with ALS among their leadership and focuses on improving quality of life through services and medical interventions. (They basically are far, far better than Autism Speaks at representing and including the people they’re supposed to support.) 

Here’s our video with image description and audio transcription on the YouTube page, and closed captions on the video. 

https://www.youtube.com/watch?v=mjUyggrMgV8

9

so this happened.

yesterday I was talking to my mom on skype and mentioned I’d written an article about the situation with parents/caretakers that keep murdering disabled children/dependents.  she was interested so I sent her some links about the subject.  then we had this (very frustrating) conversation.

[Image description: text message conversation between user of phone and Susanna.


me: here’s a link about the disabled kids/charges being murdered http://www.autistichoya.com/2013/03/honoring-dead.html?m=1

me: here’s another one https://docs.google.com/document/d/1bUvEjy6RS8Cp2Y1HbQTlTn2RQEod43vYtNwDpyHhQ3Y/mobilebasic?pli=1
and some more info http://hellomynameismaddy.tumblr.com/post/78247427221/yet-another-disabled-child-killed-by-family and here http://www.cnn.com/2014/11/10/opinion/perry-autism-london-mccabe/

Susanna: So awful, Ri, heart-rending! It’s terrible to know that sometimes disabled people are treated so cruelly, isn’t it? I’m looking forward to reading your article.With every awful issue, there are also the heroes though, untold stories of selfless devotion and sacrifice in the service of a disabled family member. [person] sees them in court, the mother who has to suck out the saliva every 15 minutes from her child’s mouth, to avoid choking, the parents who take care of a quadriplegic child, in diapers at 12 years of age, unable to do anything for himself. The parents who take turns to take care of a child 24 hours a day, 7 days a week and who still make ends meet and pay all the medical costs. I feel no one tells their story, their selfless heroism. The awful story has to be told for sure, but I feel that we have to honor the people on the other side of the coin as well. What do you think?

me: I think it’s more important to think about the disabled people. I think the focus on the parents and the framing of disabled people as burdens upon them is part of the problem. I don’t think it’s selfless heroism but rather basic human decency to do what’s necessary to take care of your child, disabled or not, which is what you committed to when you became a parent. I think everyone tells their story, poor sad parents, every time another one kills their kid, and the media and public say “it’s understandable, step into their shoes, the child was such a burden, poor parents, so difficult, it would have been the work of an actual saint to NOT murder them.” rather than taking a moment, or god forbid more than a moment, to think of the disabled people as humans with human dignity and human worth and human right to life. I think this is their story, their tragedy, their injustice, and using it as yet another moment to emote about Poor Heroic Abled People Tragically Burdened With The Presence Of A Disabled Person is exactly the problem. I think yes with every awful story there are the heroes and the other side of the coin, but those heroes, that coin’s other side, are the disabled people. to change anything that’s what needs to be focused on.

Susanna: Well yes, it is natural to see a topic from one’s own corner. I still maintain that it is important for any issue, what ever it may be, to try and see it from different perspectives. It’s never black and white. One is never totally right when one considers only one’s own corner.

me: it’s not about one’s own corner. it’s about the oppressed group. the whole point is that everyone is seeing it from the parents’ perspective and that needs to be changed.

Susanna: Sure, it is important to “lead the banner” with  zeal and fight for one’s believe. Still, I maintain that it is very important, if one wants to further one’s own point, to include and acknowledge the positive contributions of the other “side”. It will enrich your argument and help you to be heard. It doesn’t take much to acknowledge that there are many positive acts of absolute devotion from committed and good parents who go above and beyond their duty. It is just part of a well argued opinion.

me: what you’re doing is called tone policing*. look it up. I have a hard time thinking of a worse time to praise abled parents than after others have killed their disabled kids.
sure, there are difficulties that come with being the parent of a disabled child, and more services and help are needed. however, there is a time and a place for that conversation, and that time and place is not in reaction to the murder of a disabled child. because if you do that, you are essentially implying that the death is the fault of the disabled child and the disability. it’s not. that blame rests entirely on the murderer. sure, in many situations there are moral shades of grey. parents killing their disabled children is not and will never be one of those situations.
if someone’s support for disabled people is contingent on them praising abled people at exactly the moment abled people are perpetuating horrific violence against them, that’s messed up. yes, such people exist, but I would hope you are not one of them.

Susanna: I am not talking about praising parents who commit violent acts against their children, abled or disabled. There is no excuse. I am only talking about not putting all parents into the same category with parents who commit such acts. I am talking about, raising along with your important argument the fact that there are people out there who do an admirable job. I just happen to believe that it is very important to do that. I understand now that you don’t share this believe.

me: Praising the parents who commit violent acts wasn’t what I meant. it still applies. playing the “not all parents” game, aside from being off topic as no one is saying “all parents”, just contributes to the societal problem of valuing abled people and their feelings over disabled people and their lives. it’s derailing. it’s self centered. the whole point of this thing is that for once it’s not about you (abled people/parents). having to qualify each and every expression of justified outrage or mourning with “not all parents” just detracts from the focus of the conversation and allows abled parents to excuse themselves from examining their own part in the societal dynamic that leads to these tragedies. when tragedies outside of these dynamics occur, like if an abled kid is abused or murdered, people don’t rush in to say “don’t forget all the parents who would never kill their kids and who do wonderful things for them!”    it’s like if someone was holding a funeral for someone that got hit by a drunk driver and a bunch of people busted in to yell about how not all drivers would do that**. it’s inappropriate, disrespectful, and entirely misses the point. these things only happen in situations with this kind of oppression and power dynamic, because unconsciously or not people have a vested interest in maintaining the status quo and not examining their own role, and they feel threatened and attacked by acknowledgment of how truly messed up the situation is.
I’m not attacking you. please try to put any such feelings or defensiveness you might have aside. this is about mourning the people who were killed and finding ways to change society to stop it from happening again. ]

(she didn’t answer the last one so i sent some pictures of dogs as a peace offering.  confrontation is scary.)

(*I don’t think it was exactly tone policing? but it was something related.  couldn’t think of the word at the time.)

(**these examples aren’t necessarily perfect, there may be exceptions where people would do those things.)

If you’re not uncomfortable, I’m not doing my job.

I’m not here to reassure you that you’re okay, that you’re not one of them, that you’re not that kind of person. I don’t write to make you feel good about yourself, and I certainly don’t write to stroke your ego. I don’t write because I want people to think well of me, and I don’t write because I want to make excuses or amends. I don’t write because things are good and happy and positive, because frankly, they’re not. I don’t write to reassure you of your own safety in privilege, and I don’t write to appease you or anyone else. And if your feelings get hurt because I’ve spoken truth, then that’s your problem.

I write because I am compelled to shout for justice for my people, and I write because that is the only medium in which I can have full freedom of expression to share my rage and my tears and everything that I am and feel and drown. I write because I don’t have the power and privilege to speak my voice in any other medium without fear of shutdown and de-legitimization and silencing.

My voice is my own, and you cannot and will not silence me or keep my words from mattering. My voice matters and I matter. And I am as I am, not as who you’d like me to be or who you pretend that I am or who you wish I could be in some fantastical dream of yours. My voice is unencumbered with the weight of dishonesty or false courtesy or sugar-coating or mitigation. My voice is mine alone.

Chat via Autistic Hoya (Note: The following is sarcastic overdramatization of ableism. It is trigger warned for those who may be triggered by even sarcastic renderings of incredibly ableist ideas.)
  • Conversations that Shain Neumeier and I have (posted with permission!):
  • Me:YOU MEAN PERSON WHO HAPPENS TO HAVE AUTISM
  • Shain:PERSON WHO HAPPENS TO HAVE THE EXPERIENCE OF BEING DIAGNOSED WITH A LABEL OF AUTISM
  • Me:PERSON WHO /UNFORTUNATELY/ HAPPENS TO HAVE THE EXPERIENCE OF BEING DIAGNOSED WITH A LABEL OF AUTISM
  • Shain:TRAAAAAGICALLYYYYYYYY
  • Me:DEEEEEVAAAASTATINGLYYYYYY
  • (for the families, AFFLICTED WITH THE UNHOLY BURDEN OF CARING FOR A CHILD WHO HAPPENS...)
  • Shain:TSUNAMICALLY. (IF THAT ISN'T A WORD YET IT IS NOW. BECUZ TEH AUTIZMZ)
  • Me:ERMERGERD SER SCEREHR
  • Shain:IT'S LIKE THE ZOMBIE APOCALYPSE AND THE GAY AGENDA COMBINED. THE SOULLESS HUSKS ARE CONTAGIOUS AND STEALING OUR CHIIIIIIIIIILLLDREEEEENN
  • Me:EEEEMMMPTYYYYY SSOOOOOOULLEEESSSSSS HUSSSSKSSSS
  • LOCKING OUR CHILDREN INSIDE THEMSELVES
  • DOOMED TO BE FOREVER ALONE
  • THEIR POOR, PITIABLE PARENTS DESTINED NEVER TO MAKE HUMAN CONTACT WITH THESE INHUMAN CREATURES
  • Shain:THEY CAN'T EVEN TELL THEIR PARENTS THEY LOVE THEM. THROUGH, YOU KNOW, REAL PEOPLE MEANS. LIKE TALKING. BECAUSE THAT'S THE ONLY REAL WAY OF COMMUNICATION.
  • AND THEY TOE WALK
  • TOE WALK I TELL YOU
  • OH THE HUGE-MANATEE
  • Me:AND THEY FLAP THEIR HANDS AND ARMS
  • IT'S SO HORRIFYING
  • THEIR POOR FAMILIES CAN NEVER GO OUT IN PUBLIC
  • Shain:AND THEY WON'T MAKE EYE CONTACT THAT WOULD REVEAL THEIR TRUE SOULLESSNESS.
  • Me:OOHHH IDEA!
  • Shain:OH?
  • Me:MAYBE IF WE SHOCK/RESTRAIN/SECLUDE/CHELATE/HYPERBARIC OXYGEN CHAMBERIZE/UNVACCINATE/EXCORCISE/SCREAM AT/QUIET HANDS THEM ENOUGH, THEY'LL START TO SEEM LIKE /REEEEAAALLL/ PEOPLE!!!!!!!!!!!!!!!!!!!!!!!!1!!!!!
  • Shain:YOU FORGOT BLEACH ENEMAS.
  • Me:OH NOEZ! NOW I CAN'T RID MY CHILD OF THIS EPIDEMIC!
  • Shain:THERE IS HOPE IF YOU STOP THE SPREAD OF THE EVIL VACCIIIIINEEEEZ
  • ONLY ONCE THE WORLD IS FULL OF SMALLPOX AND RUBELLA AND WHOOPING COUGH ONCE MORE WILL WE BE RID OF THE PLAGUE THAT IS AUTISM
  • Me:THE HORRIFIC, TRAGIC PLAAAAAGUE
  • Shain:THAT'S CAUSED BY POLLUTION AND THE INTERNET EXCEPT MOSTLY VACCINES.
  • Me:AND A GOVERNMENT CONSPIRACYYYYYYY
  • Shain:WITH THE EEEEEBIL PHARMACEUTICAL COMPANIIIIEEEEZ
  • EXCEPT WE LOVE IT WHEN THEY GIVE OUR KIDS RISPERDAL
  • IT MAKES THEM SLIGHTLY MORE LIKE PEOPLE.
  • Me:AND OTHER PSYCHOTROPIC, ANTI-PSYCHOTIC DRUGS
  • Shain:EXCEPT SHOCKING THEM IS BETTER. AND THOSE ARE THE ONLY OPTIONS, EVER.
  • Me:BETTER IDEA.
  • Shain:WHAT
  • Me:HOW ABOUT WE PUT THEM ON ANTI-PSYCHOTICS /WHILE/ SHOCKING THEM?!?!
  • Shain:THAT WAY WE ELIMINATE ALL THE BEHAVIORS. BECAUSE THAT'S HOW PEOPLE WORK. YOU MINDFUCK THEM AND TORTURE THEM AND THEY DO WHAT THEY'RE TOLD.
  • Me:YOU CAN HOLD UP A REMOTE CONTROL AND THEY'LL ACT LIKE HUMANS.
  • IT'S SO CONVENIENT.
  • Shain:BECAUSE HUMANS ARE REMOTE OPERATED. I BOUGHT MINE AT RADIOSHACK
  • Me:I BOUGHT MINE AT BEST BUY.
  • Shain:THIS ONE'S DEFECTIVE THOUGH. AND I'D RATHER KILL IT THAN SEE IT CLOSE ITS EYES FOR TEN SECO- I MEAN, HIT ITS HEAD AGAINST THE WALL REPEATEDLY TILL IT NEEDS HOSPITALIZATION. FATE WORSE THAN DEATH I SAY.
  • Me:IT SHOULDN'T BE SUFFERED TO LIVE ANY LONGER
  • Shain:UNLESS IT'S BEING SHOCKED AND RESTRAINED.
  • Me:AND THEN, IT SHOULD BE GRATEFUL YOU CARE SO MUCH.
  • Shain:BECAUSE OTHERWISE IT WOULD BE OFF IN SOME BACK WARD. IT'S NOT LIKE WE COULD ACTUALLY EVER TRY TO LEARN FROM ITS BIZARRE NOISES AND MOVEMENTS AS TO WHAT IT NEEDS.
  • Me:WHO ARE YOU KIDDING; WE ALL KNOW THOSE ARE THE EEBIL AUTIZMS
  • Shain:YOU'RE NOT SHOCKING A PERSON. YOU'RE SHOCKING AN AUTISM.
  • Me:AN AUTIZMS
  • Shain:YOU ARE HELPING TO DEFEAT TEH AUTIZMS.

This is the world that we are fighting for — a world in which all disabled people, regardless of other identities or specific disability, have equal rights, access, and opportunity as non-disabled people. And part of that starts with our history. A people without a history can hardly be said to be recognized as equal. The fact that our history is beginning to be included in mainstream exhibitions and discussions points toward the progress that we’ve made in advancing our goals and drawing attention to our movement beyond our own communities.

I’m new to this. I’m young. And I am proud of my history and heritage.

AutisticHoya's blog is awesome and everyone should check it out.

It gets me *right there* when history, identity, and intersectionality meld into this beautiful and harmonious whole.

You don’t really know what you’re doing to me when you ask me if I’m just very high-functioning. You don’t know what that does to entire communities of Autistics, all of whom suffer from these arbitrary, hurtful labels of low and high functioning, and none of whom they even come close to accurately describing. Because they only describe ideas that don’t exist in reality, that don’t exist outside laboratories without windows or thesis papers without people. They don’t even describe precise or definite ideas. How can you take these words, then, and try to use them to describe real, breathing human beings? It reeks of ableism; it reeks of paternalism; it reeks of laziness and resorting to the language of convenience rather than searching for and using the language that affirms the value in being Autistic, empowers us despite our marginalization, and describes us respectfully and meaningfully.

"Oh, but you’re so high-functioning. You must not really understand those less able than you, those who don’t function at your level. You really shouldn’t try to speak for them."

Ruuh fi siteyn alf dahiya, ya hameer.

You don’t know me. You don’t know the life that I live day in and day out. You see me for a few minutes, maybe a few hours. Maybe a few hours on a regular basis. You know nothing about my life except what I tell you in little increments, heavily edited increments. The things I choose to let you know. The things that aren’t as consequential as the things that actually affect me. You don’t know me, and you can’t call me “high-functioning.”

—  AutisticHoya,  So High-Functioning (sarcasm)