Tuesday, August 28, 2012

On role models, and who can and cannot be one.

First, the good thing: people are (finally) coming around to the idea that Autistic adults are logical and appropriate role models for Autistic children and teens. 

Now the not good thing: some organizations and individuals are applying ridiculous standards to who can and cannot be considered a role model. One group is defining acceptable Autistics as "those who have a degree and are working full time in the field they studied." People who meet those criteria are Autistics it's acceptable to look up to. A spokesperson for an organization using these criteria opined that "anyone can get a degree, but not everyone can work full time," while reiterating that to be a role model an Autistic must be doing so.

Can we see the problems with this?

First, no, not everyone can get a degree. They cost money, they cost time, and universities and colleges are not places that accommodate everyone. Yes, they are required to have a Disability Services department. However, there are some people who are not capable of earning a college or university degree with the offered accommodations-they might have cognitive challenges or learning challenges or an inability to function in the environment. Or maybe some people don't wish to-maybe the stress and the thousands of dollars of debt aren't worth it for them. We don't all have rich families.

Secondly, the criteria of "must be working full time" excludes people who are really worth emulating. Some people, for whatever reason, cannot do 40 hour weeks. Maybe, again, they don't have the stamina to power through an entire week of sensory hell. Maybe what they are qualified for is by nature not a full time gig, or perhaps they are juggling 2 jobs like so many people are lately. Some people make other life choices-some Autistics have children & choose to devote some of their time to raising them. Other Autistics choose the self employment route. And some Autistic people partially or completely rely on SSI or SSDI. Contrary to apparently popular belief, not being able to work (or work enough to support oneself) is not a moral failure. People who get assistance also have worth by virtue of being human.

By the criteria of "working full time in the field one studied to get a degree", almost no Autistic is a role model, and a large number of the next generation won't be either. We are very much an unemployed and underemployed crowd. This criteria set is extremely ableist and classist.

Not only that, but it excludes people not just from the position of mentor, but also mentee. A lot of Autistic kids, right now, they are not going to be getting a college degree, and that's ok! There are a large number of Autistic kids who are going to grow up to receive SSI payments, and that's not a moral failing on their part! There are things some people are not able to do, and that is how it is.

Don't these Autistics also deserve role models? It's so important that our youth who aren't Temple Grandin see that they can have a good, full life within their capabilities. It is extremely frustrating to be told that there's 1 or 2 'appropriate' role models, only to realize that their capabilities and circumstances are nothing like yours. A role model is someone you can look at, say "I want to be like them when I grow up," and then actually be able to do it. 

Don't do our next generation the disservice of leaving them out. Role models come in all kinds, not just traditionally economically successful varieties. Acknowledge the diversity of our stories, embrace the different kinds of success. Not everyone can work full time or have a degree, it's true, but everyone can have a life that is full and meaningful.

Friday, August 24, 2012


At Autreat I learned that my anxiety & my difficulties with doing things that need done (hereafter referred to as “adulting”) are not things that I have to just live with. Internalized ableism says I just need to try harder, & the attitude of “you're an adult & should act like one” says that too, but let's face it: I am an adult, and that does not mean “I magically have everything together without reminders,” it means “you aren't the boss of me! I can eat ice cream for dinner! I do what I want!”

In keeping with the second, realistic definition of being an adult, I set out to make my apartment and my life accessible to me. I've tried systems like google calendar, and a paper and pencil planner before that, and these just aren't things that work for me-there's too many steps, what with having to remember to put things in there and then having to check it later. If I cannot see it at all times, it does not exist. If it requires me to be able to access a pen or other extra pieces to use it at all, it will not get used because I can't always find a pen. Using what I know about what I need help doing and how my brain works, I set up a set of visual supports. See them below the cut.

Thursday, August 9, 2012

There is blood on your hands.

A young man named Paul Corby, aged 23, was just denied a spot on a heart transplant list Change.org petition here. It is probably your fault.

If you donate to Autism Speaks, you are helping them kill him. If you support "awareness," the denial is in part your fault. If you are not actively combating the family centered tragedy & despair model of autism that Autism Speaks, Autism Society of America, & the other Big Autism organizations promote, you contributed to this violation of human rights.

I'm sure you are very offended right now. You're hurt & don't understand how I could think that awareness kills. You are genuinely shocked, apparently, that someone was denied life saving medical care because he is Autistic. I'm not. I can't believe you're surprised, honestly. So let's break it down.

As I have said before, awareness creates a sense of urgency and fear. People are plenty aware of autism. They know that we're 1 in 88-and they have been taught to associate that with things like lightning strikes and car accidents. They hear, from our so called advocates, words like national emergency, tsunami, public health crisis, epidemic. They hear our parents tell the media that we are soulless, that their real child was stolen from them, that we are damaged. The biggest organizations "for autism" fundraise with footage of our parents fantasizing about killing us, and they collect with promises to prevent and cure us. Everyone, everyone, is "aware"-this is what autism awareness is.

They are aware that when one of us is killed, the other unfortunates who are subjected to us rush to defend the murderer. They know that the people who claim to love us, those that claim to know us, those that claim to be experts in us call killing us an "act of mercy", no matter how loudly we protest. Then they move on to demand more services, to declare how expensive and how difficult we are, and yet you are surprised?

The public image that you have very likely contributed to is that autism is about our longsuffering families, about financial burden, about people who are so Other as to not even matter in our own stories, to not even get mentioned in stories of our own murders-when our murders are acknowledged by Big Autism at all. Usually ASA, Autism $peaks and the rest are silent on the matter.

So why are you surprised? This is the natural result of the narrative of burden and tragedy. By convincing them through your fundraisers and charities that we are so difficult that fantasizing about killing us is natural, you have convinced them that denying life saving treatment is the thing to do. That doctor may think he is doing the family a favor because of you. This is the awareness you pushed for in action. Thanks to autism awareness, the general public is convinced we do not have lives worth saving.

Blood is on your hands if you support this narrative. If you have donated to Autism Speaks, ASA, or any other rhetoric of tragedy institution, some of the blame right here is yours. If you actually are one of these organizations, you are using your funds and your publicity machine to feed this poisonous attitude to even more people, and that makes you a mass murderer. I hope you're proud of your "awareness".