I don’t want to delve too far into “us vs them-ness” (although I’m not sure I can help it, at least for this post), and I realize that this post may trigger some anxiety, but I feel that what I’m about to say needs to be said. The subject needs to be perceived for what it is, and explored further for what it could become. (Because of the seriousness and gravity of the topic, I’m issuing a Potential Trigger Alert.)
In Part 1 of this series, I made the statement that the existence of our “kind” is not Convenient for some. This Inconvenience applies to the challenges created by the interaction between and among different neuro-types and the accommodations or considerations that some allistics resent having to make. This Inconvenience also applies to those of us on the spectrum who have reached adulthood and “made it”, in terms of relationships, friendships, families, self-image, and occupations/careers, in that our success–and our expression of comfort and peace with ourselves–may detract from the cries for help and support made by the allistic families and caregivers of people on the spectrum.
So, whether we’re successful and independent or dependent and in need, we’re kind of “damned if we do, damned if we don’t”; there will be resentment or discord in either case. (Please know that I fully understand that this is not true for all allistic people. For example, my own partner actually said the other day, “I think it’s wonderful that you’re an Aspie” (emphasis his, not mine); and I fully realize that there are other allistic people who feel the same way).
The natural state of the human condition calls for the avoidance of pain or discomfort, and our (“our” meaning those of us on the spectrum) presence creates discomfort for some of them (“them”, of course, meaning allistic people). Thus, from Their point of view, to ease their own discomfort, they parade for cures and preventive measures. Make no mistake, this is because they seek to “cure” their child (etc) of this “wrong” “thing” so that their child can become “more normal”, less Inconvenient, and more Convenient. They want to take this sentiment a step further and call for “prevention” to ensure that We never happen again.
This sentiment is borne out of nothing but a desire to make Their own lives easier. In Their quest, they turn to the scientific community for answers. After all, science is often synonymous with fact, and who can argue with facts?
In response, Google has teamed up with Autism Speaks to collaborate on genomic information. In short, they likely want to match peoples’ genomes (genetic data) to this mysterious “thing” called Autism and see what common genetic markers may emerge. Although neither Google nor Autism Speaks would comment on this collaboration, we can pretty much figure out for ourselves what that means, or could mean. And it doesn’t take very long to reach some truly frightening conclusions about the implications and consequences–and their potential ripple effects–that might be involved for those of us on the spectrum.
Interestingly, the top dogs engineering this deal called this a “win-win”. But the “wins” are primarily for the shareholders, executives, and allistics pleading for these types of efforts–not for the autistic/Asperger’s community. In fact, they never even mentioned any desire to bring benefits to Us in any way.
Autism $peaks is “dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism”. Yes, they said prevention.
Now put those two points together: 1) Autism Speaks allocates a lot of money toward biomedical research, particularly involving genetics…to the point where they’ve teamed up with Google Genomics for a DNA-swap-party. 2) Autism Speaks very clearly states that one of their goals is prevention. Google has the hardware (the servers and equipment), the analytical data-crunching know-how, and the funding, to assist A$ with exactly that.
Now, let’s add a third spotlight. Since Asperger’s and autism spectrum conditions are considered to have a strong genetic basis, we’re very literally facing a possible future in which genes are manipulated in order to “fix” us during development. And the idea of terminating pregnancies of fetuses likely to be autistic is old news (trigger alert). I’m not sure if the abortion scenario has happened, or whether or not it’s even currently possible, but we can almost guarantee that it will happen in the future once Autism Speaks has its way and identifies autistic people and Google Genomics works its “magic” and finds the genetic associations inherent in those people. I can only imagine this will mushroom into a much bigger issue (and an even more likely scenario) with the spread of the popularity of direct-to-consumer genetic testing such as 23andMe.
(23andMe, by the way, will sell genetic data to the highest bidder. Currently, participating in medical/scientific genomic research requires your explicit consent, but given the way some companies (such as Facebook, for example) have quickly and drastically forced changes to their privacy policies on us throughout the years, this “opt-in” consent could become “opt-out” overnight and its customers may or may not realize it.)
Soooo….to review what we have so far, we take the desire for “cure” and “prevention” peddled by organizations such as A$ and its supporters. We use that to fuel a branch of scientific research, which is becoming more sophisticated, accurate, targeted, and efficient every day. We bring this package to the table of a company who wants to know everything about everyone (Google executive: “I just want the world’s data on my laptop“)….
…See where this is going?
It’s called Eugenics. Attempting to eradicate “unwanted” or “undesirable” genes via purposeful genetic selection in favor of a more “perfect” homogenous human type, without genetic “defect” or “imperfection” is exactly what Hitler attempted to accomplish in Nazi Germany. That may seem like an extreme statement, but if you research the history and the motives of some historical figures, it will be quite clear that I’m not pointlessly stirring up sensational drama. As we all know, Hitler’s regime resulted in the denial of human rights, the confiscation of personal property, and the dehumanization of human beings. These people had been real people, with families, businesses, intelligence, personalities, friends, careers, dreams, goals, wishes, and wisdom. As a result of Hitler’s desire for a “Master Race”, the victims suffered unspeakable horror.
The trouble is, this horror didn’t emerge overnight. It was the crazed end result of a long, slow, slippery slope.
It began during a situation of economic suffering and desperation. Hitler was lawfully elected by a majority vote, because he promised he would ease the suffering of the populous during the economic depression that began after the end of World War I.
It began by the “simple” scapegoating of a particular group, making broad-sweeping associations between Jewish people and Communism, and enacting “protective” measures that were meant to preserve Germany’s economy; these were perceived as logical and acceptable by the majority population in Germany.
Things got taken a step further when not only Jews, but also Gypsies and eventually anyone else who didn’t display characteristics of the “Master Race” were slowly targeted and their lives extinguished. The Nazi members did not just start off by killing people; that situation came about many years later, after the initial concept of a “perfect” race was conceived.
That is not a whole lot different from what’s happening to us (on the spectrum) right now. Indeed, it’s hard to see (and thus, easy to ignore or deny) for a few reasons.
First, it’s not the 1930s and ’40s; it’s the 2010s. Things look different now. We’re supposed to be educated, aware of what happened historically. We’re supposed to be much more “tolerant” and “accepting” of cultural, ethnic, and racial diversity. For the most part, people abhor bigotry and racism. We’re supposed to ensure that it Never Happens Again.
Second, the research labs are less visible and the data collection is more sophisticated. What happens to that data is anybody’s guess, its fate determined by private agreements and handshakes in private offices between billionaires.
And third, we’re not nearly as far along in the process. We haven’t started rounding people up and shipping them off to camps yet.
But it could happen. Very easily.
And before anybody calls me a nutjob, take a look at the “old news” link above, which points to a “story” (Trigger Alert) of a deranged mother of an autistic son who is “glad” that a prenatal test for autism wasn’t available to her during her pregnancy or she might have opted for termination. The good news: at least her other (allistic) 10-year-old son gets it (“he was indignant” when she outlined the abortion topic, she says. (“He said, ‘Anyway, what’s wrong with being autistic?'”) The (please pardon the French) fucked-up news: this post appeared on a supposedly autism-supportive site (!)
It’s already happening. The sentiment is already there.
The first measure Hitler implemented was to disarm the citizenry. I’m not going to start a gun rights debate, but there’s a similar proposal by the Social Security Administration to enter “persons with disabilities” receiving Social Security assistance into the NCIS, or National Instant Criminal Background Check System. (NCIS is a database of people that generally aren’t permitted to own firearms.) And we are indeed classified as having a “mental impairment” or “disability”. Thus, they would include us in that requirement. Again, this is not a gun control/rights debate. But what it is is highly discriminatory.
When people talk about “cures” and “prevention”, they say they want to “ease suffering”. Whose suffering? And how do they plan to do this?
They want to “offer support”. To whom? This may eventually mean institutionalizing us. (Again.)
Autism $peaks, predictably, calls for screening–for everyone, and early. This means that not only do they want to deny the legitimacy of our neuro-type and separate us from the rest of the population, but they want to do so by slapping us with a label before we’re old enough to have formed our personalities yet.
Then they want to “prevent” our “condition”, and by now, I probably don’t have to tell you that if they have their way, they would prevent the very essence of us.
Well, guess what? Not surprisingly, I would be strongly opposed to the prevention of my birth, or my right to be different, or my right to my neurotype. I don’t want the test tube of mankind telling me which genes I’m allowed or not allowed to possess, telling me that I can’t deviate from the stale homogeneity of “normal” because it just might pose a challenge (read: Inconvenience) to others, telling me I have to develop along certain arbitrary parameters in order to Make Life Easier for others (including strangers with whom I won’t have contact beyond the time frame of one school year).
Let’s take this a step broader: given that a whole list of brilliant, pivotal, world-changing people are said, thought, or known to be Aspergian/autistic (this is a good start, but not the only source), I don’t want to live in a world where these great personalities and their minds, dreams, thought processes, gifts, skills, innovations, and contributions are snuffed out before they’re developed for the sake of the Convenience of their lazy-ass families and teachers.
More importantly, I don’t want to live in a world in which each individual doesn’t have the right to an Open Future, and where it’s acceptable to deny personal rights and freedoms to someone just because they might think and interact a little differently. I don’t want to live in a world that is so control-freakish that genes are scrutinized before birth and anything but the “perfect child” is terminated.
Whether or not this has you concerned, it’s important that we all stand up and fight this. No, I’m not quite sure how. I do know that the first step is the old, tired “Raise Awareness”, but we shouldn’t stop there. We need to holler about this, loudly and often. We need to promote counterexamples to the “horror stories” and complaining perpetuated by the support groups and forums . If so inclined, we need to enter the fields of scientific genetic research or politics to ensure that ethical standards are followed and that we never repeat history.
I will not be the victim of another type of Holocaust, and neither should anyone else.
I do apologize for the “downer” of a post, but I feel strongly enough about this issue that, again, it had to be said. I sincerely apologize if it brought on any triggers or caused any trauma for anyone. That is certainly not my intent. I wish I could have remained silent, because I’d be living in a world where this would never be a threat. But the unfortunate reality is that it is. Please forgive me ❤