(warnings for: eugenics, mentions of abuse and murder, lots of capslock)
Something happened recently. You may have heard of it. You may not have heard of it. You may not know why it’s important. But it is.
GOOGLE is now partnered with an organization called AUTISM $PEAKS* on a project to create a DATABASE of the GENOMES of AUTISTIC PEOPLE and their FAMILIES.
“Why is this important?” you may ask. “Why should we care?”
YOU SHOULD CARE BECAUSE:
This database will include TWELVE THOUSAND people’s genetic data! It will be available to researchers, scientists, and maybe even the general public (2). That’s a huge breach of PRIVACY! But that’s not the worst part!
This database will be used to find a “CURE” for autism (3)! “But why is that bad? Isn’t autism that one thing where you can’t speak and act like a weirdo? Wouldn’t not being autistic make everything easier?”
AUTISM SPECTRUM DISORDER is actually a diagnosis based on a collection of TRAITS that result from experiencing the world in a DIFFERENT WAY. There are many autistic traits, such as: being non-verbal; having something called a special interest; info-dumping; being really good at something (being a savant); not understanding social cues, body language, or sarcasm; doing something called stimming (which is short for self-stimulation, and before you get dirty means flapping arms, tapping fingers, bouncing, rocking, humming, basically soothing behaviors that make us look autistic!); or having comorbid disorders which often come with autism, like ADHD, bipolar disorder, sensory processing disorder, alexithymia, dyslexia or dyspraxia. There are also many more traits associated with autism! (8) (9) (10)
Autistic people are all different, and all have different combinations of these traits to different degrees, but we all have being autistic in common. The important thing to remember is that AUTISTIC PEOPLE ARE PEOPLE TOO, and just because we think differently does not mean there is something wrong with us! We think non-autistic people, who we call allistic people for the sake of simplicity, are weird too! The problem is that allistic people have a lot of POWER over autistic people’s lives and choices, and think that some autistic people using assistive devices or requiring care means those autistic people are INCAPABLE OF MAKING THEIR OWN DECISIONS.
Autistic people are MURDERED, often by their families or other caregivers, and allistic people excuse that by saying that it must be so hard for the families to deal with their child being autistic (12)! Autistic people are ABUSED into acting like allistic people using something called APPLIED BEHAVIORAL ANALYSIS (ABA), and allistic people excuse that by saying that it’s for their own good, really, that they won’t be able to function without learning to be allistic (11)!
I know this all sounds really scary! And it is! You might be thinking, “But I would never do that!!” And that’s GREAT! The problem is that a lot of people WOULD do that, and DO do that, and think it’s OKAY TO HURT THEIR CHILDREN to make them seem “NORMAL”.
The thing is, “treatments” for autism DON’T WORK. Autistic people are autistic, and it’s something inherent in every one of us (13). Trying to “cure” autism generally means trying to KILL AUTISTIC PEOPLE so there are less of us!
This is very similar to developing a PRE-NATAL TEST for autism, which this database will also be used for (2). A PRE-NATAL TEST means you would know before your child is born whether or not they’re autistic.
Raising an autistic child is not that different from raising an allistic child. They are just different from you, and will need things that maybe you didn’t need. They also might not need things that you needed. Most importantly, autistic babies are not very different at all from allistic babies! You wouldn’t need to know before the baby is born if you need to set up special autistic things. You would only need to know if your child was autistic when they needed extra support!
So WHY do we need a pre-natal test?
The answer can be found in the statistics about Down Syndrome pre-natal tests.
If a baby has Down Syndrome, they are WAY MORE LIKELY to be ABORTED than a baby without Down Syndrome (7)! Abortion is a controversial issue, and I am not saying anything about abortion itself. But aborting a child JUST BECAUSE THEY ARE DISABLED when otherwise it would be a wanted pregnancy is very close to eugenics (which I will explain more about later) and ableism (the oppression of disabled people). You may think that disabled people have such a hard time in life that just not having them is a better idea than having them! And I will talk about that later. But many of these abortions are pushed for by doctors who give their patients all of the bad information and none of the good! The pregnant people in question don’t get to know the whole story, and they don’t get to hear the stories of those who are disabled in this way. They don’t get to give INFORMED CONSENT about their abortion because they are NOT INFORMED! They are just told how sad it is that their child will be disabled, and how terrible it will be for them and for society. They are encouraged to abort their disabled child instead of inflicting them on the world (5). This is related to something called eugenics.
Eugenics is the idea of improving the genetic quality of the human race by promoting the production of positive traits and reducing the production of negative traits. It began in Europe in the mid-eighteen-hundreds, and advocated (and performed) the sterilization and removal from the gene pool of people with negative traits. These negative traits were often things related to having mental illness, being physically disabled or neurodivergent/neuroatypical (being different mentally), being of non-white races, or being gay. Eugenics as a philosophy has resulted in the forced STERILIZATION, ABORTION, EUTHANASIA, and GENOCIDE of millions of people! It was one of the main things ADOLF HITLER was trying to do (6)!
I know bringing up Hitler will end a conversation. But HEAR ME OUT.
Telling people that it’s so sad that their child will be disabled, that their child will never be “normal” (whatever that is supposed to be), that their child will lead an unhappy life — that is NOT THE WHOLE STORY! Many disabled people have led happy, fulfilling lives! The problem is that new parents are often told nothing about how their child could be happy, and all about the possible difficulties they’ll face, some of which can be avoided or mitigated (14).
Developing a pre-natal test for autism will only cause more autistic babies to be aborted for being autistic, and continue the OPPRESSION, SILENCING, and DEHUMANIZATION of a group of people. HUMAN PEOPLE. Who are KILLED just for being WHO THEY ARE.
That is what Autism $peaks is advocating and has advocated for years (15). They recently pressured Congress not to pass a bill giving autistic people more voice (1). They say they speak for us when in reality, they speak to silence us (15). Autistic people are the only ones who can make decisions about their lives. Can you imagine your parents taking total control of your whole life? Can you imagine them deciding that, because of something inherent to you, you aren’t able to make the choices that will impact your life most? Can you imagine not being told about relationships or sex because it’s expected that you will never have those things? Can you imagine having tape put over your mouth every time you try to speak up, because you couldn’t possibly understand what they’re talking about? These are all things that have happened to autistic people.
Can you imagine going to another planet and being expected to instantly understand everything — the language, the body language, what’s an insult and what isn’t, what’s a joke and what isn’t, what people think of you based on what kind of things they do or say? Can you imagine being completely alone on that planet, with no one who understands why you do the things you do, with no one who understands you and your language, and no one who will make the effort to? Even if you spend years pretending to be from the planet you traveled to, you will always be different, and even if you act like the people from that planet, you will never really have an intuitive understanding of things and you will never be from that planet. That’s what being autistic is like when no one understands.
Autistic people, no matter what they can or cannot do, are people. By saying they want a cure for autism, Autism $peaks is saying they want to kill me and people like me. By compiling this database of autistic genes, Google and Autism $peaks are furthering a cause that will end me and the people who understand me.
That’s why you should care.
“So?” you ask. “What can we do?”
Boycotting Google is pretty much impossible! They have made themselves part of everyone’s lives! Boycotting Autism $peaks is already happening, but doing that is good too! The problem is that boycotts aren’t making enough impact! What we really need to do is make this a HUGE DEAL.
Post on Twitter. Post on Facebook. Post on Tumblr. Look for stuff written by autistic people about being autistic! There is a starting list at the bottom of this. Read all you can about autism and Autism $peaks! Raise awareness about this!
Organize a rally! Talk to your government representatives! Use the privilege of being listened to that you have because of being allistic to raise up the voices of autistic people!
We cannot do this alone. We are but a small fraction of the population that those who hate us and discriminate against us and abuse us are already used to silencing. The sad truth of it is, if it’s allistic people talking, allistic people listen to them. Please, speak up. Speak up to those who would eradicate us. Speak up and use your voice to trumpet our truths to the world.
We are autistic, we are disabled, but most importantly we are human. And we are not alone.
*Autism $peaks gains traffic from people using their name — thus, this solution, of being clear without generating traffic for them. The name of the organization is actually with an S.
goldenheartedrose’s post about A$ is a lot more eloquent than I would be about why they’re terrible, aside from this incident. (Their blog in general is a lot about autism, but be warned about swearing! You can check their tag for autism as well as their Autism 101 page and their list of resources!)
queerability is also a pretty cool blog, specifically about the intersection of disability and qu**rness!
The Autistic Self Advocacy Network, also known as ASAN, one of the only autism organizations made of autistic people
Ask an Autistic, a blog where you can ask questions regarding autism!
Radical Neurodivergence Speaking, blog posts written by autistic people. specifically this.
Just Stimming…: The Obsessive Joy Of Autism - This post especially, but the rest of their blog too!
Musings of an Aspie, a blog by a woman with autism. Start with her Essential Reading page.
Awareness versus Acceptance: Do Words Matter?
CITATIONS and other INTERESTING STUFF (general trigger warning on these links for the terrible things that happen to autistic people):http://ift.tt/1xFDddzhttp://ift.tt/1s1zdnzhttp://ift.tt/1pBuDbghttp://ift.tt/1pCHY2Z
(please note this link and the link before lead to A$, so proceed with caution!)http://ift.tt/1gvhRIHhttp://ift.tt/MbdC0Xhttp://ift.tt/1ipFjoahttp://ift.tt/1iEr1Pghttp://ift.tt/1oQBjTu
(this website uses a lot of gendered language, a lot of which is not really relevant, but it’s very useful!)http://ift.tt/1pDf6aT
(please note this site in general may contain swearing, but this page does not)http://ift.tt/1oQBmyvhttp://ift.tt/1oQBjTxhttp://ift.tt/1dCOzrYhttp://ift.tt/1ipFjo9http://ift.tt/1loJmEg