Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Tuesday, August 27, 2013

"Everybody" knows wrong.

Trigger Warning: Erasure, references to ableism and "wiping out" autism

Today, I'm talking about one of the parallels I noticed between manufacturers as described in Democratizing Innovation and organizations that miss/ignore the contributions of activists who are outside their organization. Autism Speaks would be a pretty good example of that kind of organization, FYI. They needed a week of activists yelling at them on their page to give credit to the fact that Google's changes to their search suggestions didn't just happen. Autistic adults, a group they tend not to think about beyond the idea of a crisis and transition, made it happen.
 Manufacturers are often convinced that they developed innovations that were actually developed by lead users, only convinced after being shown the lead user prototypes predating the designs they sell commercially. This comes at least partially from the fact that “everyone” knows user needs are found through market studies and products are designed by manufacturers to meet these needs. Similarly, "everyone" knows that nondisabled caretakers are the advocates for disabled people, and that often means parents. This is the part where I quote Tamora Pierce, in the form of something she had Daine say: "Someday I must read this scholar Everyone. He seems to have written so much- all of it wrong." That shows up in Emperor Mage. It's kind of the problem here: "everyone" knows a thing. "Everyone" knows that user needs are found through market studies and then manufacturers design a thing to meet those needs. "Everyone" knows autistic people are helpless eternal children and someone else needs to make advocacy things happen for us. And "Everyone" is wrong.
"Everyone" knows it. And that has effects. Since “everyone” knows where innovations come from (manufacturers,) manufacturers typically don't track where their innovations actually come from. Or groups like Autism Speaks don't track down how things actually came about. Maybe they even feel like the changes Google made were things that just happened. It's not true, but everyone knows manufacturers do the things or everyone knows autistic adults don't exist/don't do the things, so no one checks to see if maybe someone other than a manufacturer did the thing or if autistic adults did the thing.
Additionally, modifications and improvements made by their own engineers often hide the user-innovator roots of the product. In terms of organizations, that can be things like organizations making additions to the things that other activists (even member activists!) do and then not crediting the initial activists who started the thing. That happens, sometimes. I'd put money on even organizations I like, ones I think of as generally being pretty good, doing that one. How they react when the roots are pointed out matters more to me than them making the mistake or not, in this case, since, well, it's not that hard a mistake to make. But if you insist that it's 100% yours now and/or that the initial contributions of the original activists don't matter? That's when we have a problem.
In reality, nearly 80% of major innovations in scientific instruments that were commercialized actually came from user-innovators, despite manufacturing firm managers being convinced that all the examples were developed within the firms. In reality, Disabled people, Autistic people, make a lot of things happen. It was autistic people who got Easter Seals to write their apology, I'd bet. It was predominantly autistic people in an autistic-run (I KNOW IT WAS AUTISTIC-RUN BECAUSE I RAN THE FLASH BLOG AND KNOW THE PERSON WHO TALKED TO THE MEDIA) effort to get Google to at least not suggest hate speech searches. [The results of the searches were not changed. This is not preventing people from accessing articles, it is simply making it so that you actually have to type out the hate speech yourself if you want to search hate speech.] It was disabled people who made the ADA happen. It was autistic people who dealt with the bus ads talking about wiping out autism. The people who use things every day, who know their disability in and out because they live it, who are out in the community or out in the world living? Yeah, we actually do a lot of things. It's not all big organizations or big manufacturers, but the "wisdom" that it is? It hides the times when it's not.

P.S. Today is my birthday and also I'm heading off to a pre-departure orientation for study abroad. 


  1. Happy birthday!

    (P.S. I love all the Tamora Pierce quotes that show up in your writing)

  2. Happy Birthday, Alyssa! I love the thinking-through and writing-through that you do - every day. xo

  3. Another happy birthday, just under the wire!


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