October 25, 2013

I’m gonna start using this blog more. 

October 25, 2013
I might be a tad obsessed with Lady Gaga. That’s only the half of it.

I might be a tad obsessed with Lady Gaga. That’s only the half of it.

June 15, 2013


I want to officially and formally thank everyone at The Autistic Self Advocacy Network for the best week I’ve had in a long time. ACI is a must-do for every Autistic young adult. 

I have learned a lot, and I have been inspired. I’m so proud to be a part of still very young movement for acceptance of Autistic people. Now, I need to “Aut it forward.” (A phrase I just made up. Play on the “gay it forward” the LGBTQ community uses for “pay it forward.”) I can’t wait to see the day when Autistic self-advocacy is the norm, and people never question the importance and validity of ALL Autistic people and their voices. I can’t wait for the day when I don’t have to hear about another Autistic young person being murdered by the people who have been entrusted to love and care for them. I can’t wait for the day when ALL students are able to learn in an inclusive, safe environment. I can’t wait for the day when ALL Autistic adults are able to work in environment that recognizes that they are just as valuable as every other person. I can’t wait for the day when ALL Autistic people are fully included into the community. I can’t wait for the day when ableist slurs and rhetoric are taken out of everyone’s vocabulary. I can’t wait for the day when ALL Autistic people are able to freely and safely express who they are. 

I am proud to be Autistic. I will not be silenced anymore. My hands will be LOUD.

May 26, 2013


“you shouldn’t be depressed, people have it worse than you”

finally, after years of searching, the person with the worst life ever is found. formally, they are granted permission to be sad. but only them. only they have earned it. no sads for anyone else at all ever

(Source: theawolbrony, via nicocoer)

May 26, 2013

(Source: dyslexicdan, via genostylist)

May 26, 2013
Don’t teach kids that their body is wrong




Something that can happen in therapy for disabled kids is:

People hold out hope that the kid won’t be disabled anymore, when they grow up.

So they push the kid as hard as possible in childhood, and tell them (often without saying this explicitly) that if they just work hard, their body won’t be wrong anymore.

This doesn’t work.

People who are disabled as children are usually still disabled as adults. Even if the therapy helped them. Even if they gained new physical abilities. Even if they learned things from it they wouldn’t have learned without it.

Even if they learn to walk. Even if they learn to talk. No matter what other skills they acquire. Their body is probably going to stay very different from most other people’s bodies, and far from the cultural norm.

And… part of living well as a person with a disability is accepting the body and the brain that you have, and working with it rather than against it. 

Because you can’t live in an imaginary body; you can’t live in an abstraction. You have to live your own life, as you actually are. And sometimes that involves medical treatment, sometimes it involves equipment, sometimes it involved therapy - but always, it involves reality. You can’t willpower yourself into being someone else. 

Disabled kids tend to get taught the opposite message, because childhood therapy is usually cure-oriented even for conditions that aren’t anywhere close to curable. It’s about normalization, much more than functioning well.

Then they go through all manner of hell unlearning this once they’re old enough that everyone gives up on pretending that a cure is going to happen.

If you’re responsible to or for kids with disabilities, do what you can to protect them from this. Make sure they aren’t being pushed to hang their self-worth on accomplishing things that are physically impossible or implausible. Help them to understand hat their bodies aren’t wrong. Teach them that they already have lives worth living.

This, making me “use my words” and speak perfectly - and the general idea that speech>everything else has made me more silenced/uncommunicative.  Because using writing, sign language, pictures, sounds has meant getting through shame and fear.  And getting through all that has meant not communicating when what I had to say was important.

And only being able to connect when I’m on the other side of that veil of fear.

Absolutely this. Most of my suicide attempts had to do with the fact I KNEW I was never going to be cured, and didn’t even understand what I had, in the first place. And nobody gave me even a fraction of a clue, that people like me could exist in adulthood outside of institutions and not be cured in the least bit. Let alone that it was okay to have a condition with no name. Or that some of my conditions had names. Or that progressive conditions didn’t mean you’d disappear. Nobody taught me any of that. So I assumed the worst.

One thing I tell people over and over again. Don’t promote a cure as the only hope. Because the kid will know they can’t be cured. And when they know your version of hope is based on totally fake ideas (like that it’s possible to cure them, or possible that they will learn something they know they can never learn), then as like as not they will become hopeless. And that’s where suicidal thoughts are born.

You have to make sure the kid knows that it’s possible to live a good life AS THEMSELVES. Meaning as who they are now, not as who they could be if everything went according to your plan that probably won’t work in the first place. That they don’t have to live in an institution, or with you. That there are other options.

If you can’t find other options, make them. Yes it’s hard work. But I wouldn’t be living in my apartment if thousands of disabled people and our parents and caregivers hadn’t fought really hard to create services that were alternatives to institutions, and fought for ways to fund them. Such fights can be won, and rolling over and giving up isn’t in anyone’s best interests. Yes, there are people who would rather be taken care of by family, but there are also people who can’t, or don’t want to, and you can’t assume that your child will want to stay with you forever. My own family, with lots of disabled people, has a long tradition of relatives taking care of each other, but it’s still important to have those other options. Because family could die, or have a falling out, or become too disabled themselves to take care of someone else. And then what. You don’t want to plan to live forever, and you don’t want your kid dumped in a nursing home, group home, or other institution went you die. There are other options, regardless of how severely disabled someone is. (No, I’m serious. It’s true. There’s nothing that can be done in an institution that can’t be done outside of one. Just because our society likes to build institutions for disabled people doesn’t mean it’s the only way or the best way. There’s a reason institutions of all kinds have high mortality rates and it’s not because that’s where all the experts in taking care of us go.)

For instance, I used to know a guy who couldn’t use more than seven words in sign language, couldn’t see, couldn’t walk, needed fairly intensive nursing care, had “severe behavioral issues”, and owned his own house and lived there with roommates. He’d been thrown out of a state institution because he cost them too much money destroying their clothing and blankets by ripping it up — something he did because he was in untreated pain from a leg that had been dislocated for years without any treatment. People always point to people like him and say they can’t possibly live outside institutions, but that’s just propaganda for institutions, it’s not true. I’m also a good example of someone who needs kinds of care that are traditionally thought of as institutions only, but I live in my own home with support. It doesn’t take any kind of skill to live on your own, it just takes having the right supports in place, including roommates if necessary.

So don’t assume your kid could never do it, that’s a soul-killing thing to tell them if that’s what they want to do with their lives. Especially if they don’t want to live with you forever and see institutions as the only alternative. Be sure your kid actually sees and knows adults with severe disabilities of all kinds living on our own. Not just in institutions. Because kids aren’t stupid and they will figure out that people like them are all in institutions and it will make them lose hope that they could live any kind of pleasant future at all. I’d figured it out by the time I was twelve or thirteen. By the time I was fifteen, I’d worked out I’d never be cured. That put me ahead of virtually everyone else in my life.

And if you want to know the messed up things that happen when you’re a disabled kid who is told constantly that you could (insert skill here) if you tried hard enough, read _The Me in the Mirror_ by Connie Panzarino. She could never walk a single step in her whole life. Yet she’d been told since infancy that she just wasn’t trying. So she believed that secretly she could walk and one day would, and that she was just holding out on people because she didn’t want to. She was fifteen before she figured out it wasn’t true. I’m still working my way out of mental tangles of that sort, and I’m in my thirties. Don’t create such tangles, and don’t let anyone working with your kid create them either. It’s as important to know your limits as it is to know your strengths. I’ve nearly killed myself, and done serious damage to my body, pushing myself past limits I didn’t know (or couldn’t believe) I had.

People are always talking about the dangers of limiting disabled people too much, but it’s just as dangerous to teach us we have no limits. That means saying no to all the “inspirational” BS that says that every limit can be overcome, and that limits exist only if you believe in them. They say post-polio syndrome is the most severe in people who tried the hardest to push past their polio when they were younger. Many autistic people suspect that the movement disorder I have (“autistic catatonia”) works in similar ways. Believing you have no limits has serious health consequences. It’s especially dangerous for people who have problems with physical or cognitive stamina, because for us, learning to pace ourselves is critical to avoiding dangerous situations. If I go past a certain point my muscles go so limp that I have trouble breathing. You don’t want to mess with that. And that’s to say nothing of shutdown, pain, and exhaustion.

So… All of these things are critical to teach any disabled child. Not just by using words, but by example and by showing them people and situations that back you up. It didn’t matter what words anyone said to me, without actually seeing disabled adults who weren’t employed, couldn’t take care of themselves, and still lived on their own, I believed my future to be completely bleak and hopeless. Once I started meeting such people, my life completely turned around and I had something to live for again. I moved out on my own, got services to take care of me, and haven’t looked back. I would be devastated if someone forced me to live in a nursing home, and I would not do well living with family. (That was especially crucial when my family still lived in the house I grew up in, which was associated with too many bad memories for me to ever feel comfortable living there or even seeing it from the outside again. I can barely even look at pictures of it, and when I thought I’d have to live there forever I was desperately unhappy.)

(via realsocialskills)

May 26, 2013



“You shouldn’t flinch like that when people touch you unexpectedly. It’s rude, and offensive to them.”
-My Mother

Submitted by: nonbinaryfairy

May 26, 2013



“We are the generation of nostalgia. We grew up in the age of transition. From hand-written letters to electronic mails. From film to digital. We were fascinated by new things, neglecting the way we spend our afternoons. Cupcakes and tea. Play-Doh and Polly Pockets. Young and naive. Technology completely changed the way we waited and we grew up too fast. The simple things in life seems more meaningful now. We grew up in the age of transition and have become the generation of nostalgia.”

— (via everythingisbloomable)

I… technology meant I could have conversations. I had so many layers, and only the top layer ever got access to expressive language. And the more real, the deeper part of me, never had any access to words until I could type. And until I found people on the Internet who wanted to talk to those layers of me…

…I’m just not nostalgic about what it was like before that was possible. At all. 

I liked play-doh and polly pockets, too. And I like marbles and stuff too. And a lot of it, I don’t have to remember, because I still have it.

But I like being able to communicate and have a peer group much more than I like any of that.

And I think that kind of nostalgia hurts kids like me. Who are growing up in a world in which computers and the internet are ubiquitous, but are deliberately kept away from them.

 Who are only allowed one hour a day on electronics, lest they not be real kids anymore. Who have thousands of dollars worth of toys that are associated with this nostalgic kind of Real Childhood, but no computers.

Who are signed up for expensive and horrible activities so that they will be socialized, but not allowed access to the tools that would make real communication and social interaction possible.

And just… there were a lot of things that couldn’t have been better in my childhood because the resources I needed just didn’t exist. They do now. And things could be so much better, if kids who need what I needed then were allowed to use it now that it exists.

^ this

(Source: kistymea, via patternsmaybe)

May 26, 2013
I’m dependent on technology…


…and I’m 100% ok with that.

(Source: patternsmaybe)

May 26, 2013


if you wanna be my lover, you’ve probably already been w all my friends #queerspice

(via lgbtlaughs)

May 26, 2013
Examples of anti-skills




quixylvre asked realsocialskills:

…In trying to explain to my mother what “anti-skills” are, she wants me to provide a list of examples. Could you, in a single post, provide a list of anti-skills that autistic people are routinely taught, perhaps also an addendum with anti-skills that are merely occasionally taught instead of consistently?

Some anti-skills I can think of off the top of my head, with some relevant links:

I also talked about some anti-skills in this post I wrote for someone considering working as an aide for an autistic kid.

These are some of the anti-skills I know about, what are some others y’all know about?

-Reflexive obedience to or attempting to please authority.

-Becoming convinced that you lack emotion or empathy.

-Becoming convinced of an innate, across-the-board inability to understand social situations, rather than understanding that you have certain perceptual barriers in certain social contexts.

-Reflexive acceptance of the priorities of others for you as your own.

-Falling under pressure to believe that other people’s perceptions of you and your abilities are more reliable than your own instincts and intuition.

-Basically all kinds of pressure to make you believe that your own perceptions are wrong and not reliable, and that paying attention to them, or taking proper care of yourself in atypical ways, is morally wrong.

- Becoming convinced that you can only get a job related to your special interest because you won’t be able to do anything else well

- Becoming convinced that you can only make friends if you behave as rigidly normal as possible, and that you are not entitled to feel comfortable around your “friends”

(via bendingthewillow)

May 26, 2013
I wish…


…that there were some actually good resources for parents…

Because I can’t see how it would have done me any damn good to be diagnosed as a kid.

Given that most of what’s out there is basically cure oriented tragedy porn.

And books written for our siblings about how, yeah, we suck, but they should understand and love us anyway, because it’s not our fault.

I… they tried, you know? I just wish… I wish I had more hope for kids now. Wish there was more to help them. And to help parents understand.

Because I don’t want any more autistic kids growing up the way I did… and a lot of people had it far worse than I did.

(Source: patternsmaybe)

May 26, 2013

For those asking, I’m sorry, but I can’t give my new blog to any people who I haven’t followed before. I need it to be very private. I will return after the summer though.

May 25, 2013

I made a new blog. If you have gotten a new follower in the past 24-ish hours or so, check your followers if you want to re-follow me.

May 24, 2013

Anonymous asked: Thank you because both this blog and Queerability are spaces that make me fell like a legitimised human, and I am not the only one who thinks so. You and the work you do are important.

Thank you so much! <3

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