I am very concerned about something you are getting yourself into.
I am very concerned about the rights of my people if you actually do what you intend to do.
I think you influence a lot of what goes on in the web-based information sharing and I am afraid you will hurt a lot of us, and I want to believe that this is not your intention.
You have already proven that you are capable of listening when you made some changes in your algorithm, so that searches of “Autistic people are” would not auto-complete with words like “tragedies” and “retarded”; you did the same for the search “Autistic people should”, and the autocomplete no longer shows the word “die” as the first option.
I thanked you then and I thank you again.
You helped erase some of the negativity about my neurology.
But it is time for me to educate you again because you are partnering with the wrong crowd. You will do much harm.
I am talking about the project Aut10K. The project that can finally make Autism Speaks gloat about how they can finally help the world get rid of autism, and of Autistic people. Do you think I want to not exist?
Before you feel tempted to use the silencing tool your partner Autism Speaks likes to use when confronted by us, saying that we are only a few loud individuals who don’t know what autism “really” is, or using outdated and inaccurate terms like “low-functioning” and “high-functioning”, or saying that their children are suffering (and using examples like seizures and GI problems that are not autism) let me tell you this:
I am what Autism Speaks calls severe and “low-functioning”. I could not always make myself understood, I used to scream and cry a lot, and I am, to this day, very disabled. I cannot be left alone, I cannot eat by myself most of the time, I cannot take care of myself, I need 24-hour assistance. I am non-speaking.
I have written about my life, a lot. You can Google me (or should I say you can “you” me?)
So, about the project:
It is potentially unethical and commercializes very private information.
With all the debate about the government watching us, with all the debate about how much private information companies should be able to collect and store, with all the debate surrounding the adds we receive online (and you are very careful about that, aren’t you?), and about our privacyn being violated, why do you think collecting genetic information about only one group of people, a minority, is ok?
I, and some of my friends have reached out to you explaining why we are concerned about that, but you openly and blatantly ignored us.
See how we have reasons to believe you will harm us deeply? You are already employing Autism Speaks’ tactics and pretending we don’t matter and that the world would be better off without us.
I want you to learn that autism is not a disease. We have a different neurology and yes, we are disabled, even if many of our disabilities is a social construct, a lack of acceptance and accommodations.
This should not be an excuse to use our genetic information for the profit of others.
I noticed that there are no plans whatsoever to use profits for better services.
We don’t need pharmaceutical predators, and we don’t need eugenicist researchers trying to rid the world of us.
We are who we are and we have rights.
Would you get involved in a project called Black10K?
Would you commercialize genetic information about black people to make sure the right combination of genes, or that some genes should be excluded from the gene pool, or that medications should be develop to “correct” the “wrong” genes, all this with the objective of making the world more white?
This example is not absurd. Think about it. Why do you recognize racial diversity and not neurological diversity?
Autism Speaks hates us. I have regularly reached out to them and never got a response. They claim I am not really Autistic when I write, and too “damaged” and “severe” when they see me.
In any case, the organization makes clear that its main goal is eugenics.
Do you remember who else wanted the world without disabled people? Or without anyone who did not conform with their ideas, or did not look like them?
You don’t even need to Google that.
Dear Google, your partner believes that “Autistic people are” – tragedies; that “Autistic people should” – not exist.
You fought with us once. You should give up this harmful project and fight with us again.
At the very least, you should consult with us and address our concerns. We already stated them (and we are about to do even more). It is all in the web.
Google, it looks like you have a lot of googling to do.
About the Author, Amy Sequenzia.