Right this very second, someone out there is sipping a glass of pee in the name of good health. Meanwhile, someone else out there strives for health by swallowing liters of a fermented cabbage juice containing as much sodium as seawater with side effects such as nausea, vomiting, and diarrhea, all “signs” that the treatment is “working” to rid their bodies of pathogens and parasites.
Throughout history, people have committed some strange acts in the name of good health. Take trepanation, for example. For centuries, doctors drilled holes in our skulls to release the demons, the cause of headaches and of mental illness, because back then we thought, “Gosh, that really makes sense.”
For practically two thousand years, doctors drained us of our blood as a way to treat everything that ailed us, and that made sense because without an understanding of circulation, that old blood could stagnate in our limbs. Even after we discovered the circulatory system, we still did it because we had no other explanation for disease. George Washington himself was drained of about forty percent of his blood to alleviate the inflammation of a sudden throat infection – the night he died! So go ahead and laugh at our ignorance, because even the greatest men in history hadn’t a clue.
It’s 2018 and some things look the same. There are still people walking around on an Earth they think is flat. A lot of people – including a big chunk of Congress – deny climate change is happening. And I’ll never get over just how many people will share a Facebook post that states that in X amount of days the moon with replicate itself 37 times and be visible from Earth, a phenomenon that won’t be seen again until the year 2345.
And we all thought the Internet was going to make us smarter. Sure, the Internet gives us 101 do-it-yourself project idea for pallets, and now anyone with a smartphone can disprove any person’s ludicrous claim faster than he can finish saying “…It’s true, I saw it on the Internet.”
Back in 2004 when the Internet was still a novelty, being connected online made it possible for me to notice that my 15-month-old son was showing signs of autism. I was able to research what autism was, find local resources for support, locate doctors, clinics, and learn about available treatments.
I understand desperation in relation to health. I’ve lived without health insurance and I’ve sat at a big round table as specialists and doctors diagnosed my baby with autism, a condition that couldn’t be ‘cured.’ And when I went home, I researched what other parents were doing for their kids and I encountered ‘miracles’ and ‘treatments’ that parent testimonials claimed made their Autistic kids start talking and learning. I even wanted to believe them, spending hundreds on different vitamins, fish oils, digestive enzymes, and probiotics. That scarier stuff – chelation, injections, herbs that couldn’t be properly regulated or verified – I couldn’t justify the risk.
But that was a long time ago. I know better now.
And that’s what we say when we think about the barbaric practices of trepanning, bloodletting, and lobotomies. That was a long time ago. We know better now.
But there’s still a problem. All of us don’t actually know better because somewhere out there right now someone is forcing their Autistic child to drink (and even take in the form of toxic enemas) an industrial bleach as a way of curing autism, ‘discovered’ by a man who claims he was sent from a “Planet of the Gods” in the Andromeda galaxy. Somewhere there is another parent buying into one crackpot woman’s false claim that her particular fermented cabbage water can cure a number of different conditions and even reverse the symptoms of autism, Down syndrome even, and other “special needs” disorders, and making their Autistic child drink it while actually making her physically sick and dehydrated from excessive sodium intake.
Parents desperate to ‘cure’ their child’s autism are being conned out of their money. But what’s even crueler is the false hope that drives some parents to withhold vaccinations, thinking that they can prevent autism from ‘stealing away’ their child while putting him at risk for preventable diseases. The real victims of the cruelty are the children whose parents are implementing a host of dangerous, unproven, abusive treatments misguided by the notion that autism is a condition curable by seeming cutting edge bio-treatments and those DIY home remedies from the Internet they believe the pharmaceutical industry is trying to keep hidden from us.
I wish the insanity stopped there, but it doesn’t. Chelation, a common treatment for lead and mercury poisoning, despite the absence of scientific evidence, is still used to remove what some people believe are the heavy metals and toxins deposited by vaccines in the bodies of autistic children, even though the doctor who recklessly declared that vaccines cause autism had his medical license revoked and eventually retracted his claim.
Groups with ominous names like “Defeat Autism Now” and “Generation Rescue” tout chelation as a safe, essential treatment for autism with “proven scientific benefits.”
It’s mind-blowing what we humans cling to out of sheer desperation.
The pseudoscience of chelation therapy as an autism treatment is administered via IV, sprays, drops, and suppositories, and results in some serious side effects like headaches, vomiting, convulsions, fever, and a sudden drop in blood pressure. Risks include cardiac arrest, kidney failure, and death.
Some parents took the chelation step to a whole new level of atrocious, convinced by ‘experts’ that the rising testosterone levels of their developing sons were binding to the mercury in the body (no scientific evidence), preventing it from being removed and thus hindering the chelation process. The involuntary chemical castration of the child was their solution.
I think about why someone might believe fermented cabbage water could kill an imaginary yeast infection throughout the body that apparently causes all of our illnesses, including cancers, as often as I think about things like, why is autism perceived as a defect, something to be fixed? Is that perhaps the more defective thinking? Is not ‘disability’ a natural part of the human experience? Is drinking pee, for that matter?
There is an expanding paradigm shift in the perception of disability as a natural part of human diversity without negative connotation.
The group Identity-First Autistic does a great job presenting this concept to the world as the “disability models.” They shatter the existing disability paradigm by presenting disability as not something that is inherent in a person, but something that comes as a result of how they are perceived.
The medical model of disability refers to people who are disabled by their physical impairments or differences. Under this model, these people need to be “fixed” by medical treatments, regardless of whether the disabled person is suffering or in pain. It focuses on what is ‘wrong’ with the person, placing limitations instead of providing them with what they need in order to be independent and in control of their lives and their destiny.
Then there is the social model of disability. Here, the disability is created as a direct result of the way society is organized, resulting in systemic barriers to the individual – negative perceptions and exclusion, both intentional and unintentional. Here it means society is the main contributing factor that ‘disables’ people.
Autism may include sensory, intellectual, and developmental variations that can cause functional impairment, but as Identity-First Autistic puts it, “these do not have to lead to disability unless society fails to take account of, and include people regardless of their individual differences.”
But where do we begin to change all that? It could begin, for starters, with the medical professional. As the doctor, we parents of newly diagnosed Autistic children look to you for information, and when you tell us, “Your child has autism,” you are essentially setting us up with the perception that that is negative, a disorder that is a defect in my child’s brain – as if he would be someone else without this disorder. Perhaps this paradigm would decrease some parents’ desperate attempts to cure their child’s autism with dangerous pseudoscience instead of accommodating the Autistic child’s unique needs in this life.
So, society, it seems that the ‘cure’ starts with us and with our perpetuated ignorance-based approach to disability. And that can’t be treated with a glass of pee or a fermented vegetable, or bloodletting. We need another ‘cure’ for autism like we need another hole in the head.
This Imperfect Life
By Jean Perry