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So I'm going on a registry. I may already be on one.
I have no say in whether that happens or how much of my medical information is shared. More importantly, I have no idea how said registry will be used now or in the future. That's horrifying. Will it be used to add new requirements for receiving disability/SSI/Medicaid? Perhaps it'll require some kind of 90-day "camp" or similar to ensure I'm really autistic and have tried everything in my power (i.e. forced labor) to overcome my difficulties, or some bogus/dangerous alternative therapy like chelation or the hyperbaric oxygen treatment that recently exploded and killed a 5-year-old child. Or maybe it'll be used to deny me certain medications like the Adderall I rely on to safely live on my own. Kennedy and Trump have a bad track record when it comes to understanding the importance of psychiatric drugs. Perhaps my social media activity will be monitored like that of the immigrants who speak out against the genocide in Gaza. Maybe a combination of all these things, or something far more ominous will happen.
AMA's position on informed consent.
None of it is okay. And the scary part is the uncertainty, the violation of my private medical data (or data I THOUGHT was private) without my consent. Informed consent is a cornerstone of medical ethics & legal practice; a concept enshrined in law and proudly adopted by the American Medical Association & other major health organizations around the world, and patient privacy is vital to that paradigm. My medical record mentions "autism" on nearly every page along with my other diagnoses. Apparently RFK is using Medicare/Medicaid data for this little "project", which is reminiscent of Hitler's Jew registries during the Holocaust. Just how much personally identifying data is available to him remains to be seen. We may never know--like so many other things in this country, they may lie or obscure this info, simply labeling it "classified" until some point 30 years down the road when we find out, nope, actually that was a lie.
What's with the obsession with autism, as if it's some kind of plague or curse? Sure, it's not easy living in a neurotypical world with a differently-wired brain, but there are undoubtedly worse fates. Contagious diseases like Avian flu, COVID and other potentially deadly plagues, for instance. After leading the world in COVID deaths & cases for the entirety of the pandemic & losing over a million Americans to the disease, our government should be focused on making sure that NEVER happens again. I'm talking a complete restructuring of the healthcare system, state law regarding mask/vaccine/lock down requirements, laws regarding highly secretive testing of deadly diseases in military labs, such as gain-of-function studies, & other precautions. But no, Kennedy is focusing on autism-vaccine links that have long been debunked by every credible medical association in the world. Nobody asked for this.
America's Sordid History of Unethical Human Experiments
Mustard gas burns on American soldier
The U.S. has a long & disturbing history of unethical human experimentation, so my fears aren't unfounded. Any government that sees fit to allow surgical experiments on children & slave women without anesthesia; feeding irradiated food to mentally disabled kids & conscientous objectors of war; exposing military personnel to mustard gas; infecting prostitutes in Guatemala with syphilis and then denying them treatment to "study its effects" or any of the other nightmare-inducing forms of torture the U.S. government has engaged in does not deserve my medical data. MK-ULTRA is just the tip of the iceberg. Here's an abbreviated list of secret medical projects in our nation's history. I sincerely hope you'll do your part to learn more about them:
Projects Bluebird, Artichoke, Shipboard Hazard & Defense, the Manhattan Project, Projects GABRIEL, SUNSHINE & CHATTER. Operations Top Hat, Sea-Spray, May Day, Big Buzz, Drop Kick, Big Itch, Green Run, Plumbob, LAC (Large Area Coverage), Midnight Climax, Crossroads, Dew & Whitecoat.
Explanation of the "increase in autism diagnoses" fearmongers always refers to.
If you can look at that list or look into what those top-secret military & government experiments entailed and still think this autism registry is a good idea, a village somewhere is missing its idiot. Those who fail to learn from history are doomed to repeat it--this is not a cliche. Here's what I envision happening: the very existence of these creepy registries will discourage people from getting themselves or their kids diagnosed with autism, thus it'll look like rates have dropped under the Trump Administration. But just as the true prevalence of autism hasn't increased as dramatically as they claim, that will be a lie. A manipulation of the data. What really happens is that these undiagnosed people slip through the cracks, fail to receive proper treatment in time & suffer a lifetime of social exclusion, employment difficulties, academic failures & other unnecessary hardships. They will be labeled eccentric, lazy, picky, weird, odd, obsessive, asocial & many other things that send their self-worth into the toilet. I know because, for most of my life, I was without a diagnosis and that's exactly what I've faced & continue to face.
NOT IN MY NAME.
Unless it wasn't clear:
As an autistic person I do not consent to the sharing of my personal medical data for this registry or any other government purpose, and especially not with a man who does not believe in the Germ Theory of disease. A man whose family decided that a lobotomy was the appropriate treatment for one of its members, and hid the fate of said family member from even her siblings for 20 years. (Ironically, the cause of Rosemary Kennedy's original disabilities was that she was forced to stay in the birth canal by a nurse for TWO HOURS because the doctor was away tending to Spanish Flu cases... ironic because we're on the verge of another flu pandemic). A man with financial ties to the alternative medicine/anti-vaccine movements. Nothing good can come from this. Not a damn thing.
Neither this administration nor the one before it have been the least bit concerned with improving the actual lives of autistic people--making society a kinder, more accepting place, improving employment prospects, alleviating homelessness, making the drug supply safer by ending drug prohibition, improving public education in regards to IEPs, 504 programs & other supports designed to help kids with learning disabilities. Universal healthcare is not even on the table despite the fact that a whopping 41% of Americans are already on some form of government-funded health insurance (VA, Medicaid, Medicare, etc). That only adds additional fuel to my fire in protesting this "registry" with all my might.
I will do anything in my power to fight things like this, whether that includes joining ill-fated lawsuits, protests, petitions, public debate or anything else, in part because those lower on the autism functionality spectrum can't fight it themselves. I was blessed with the gift of language and speech, and I intend to make my voice heard even if I'm screaming into the wind. Autistic people aren't broken humans, nor are we a drain on society. Any society that fails to lift up its most vulnerable members has failed at the very purpose OF a society. I would strongly encourage other disabled people, those with mental illness, the elderly, racial & sexual minorities and anyone else this nation views as expendable to join me in the fight. Today it's me, tomorrow it could be you or someone you love. At this rate it probably WILL be.
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