As an Artfully Autistic reader, you may already be aware of the #StopTheShock movement, which has been working to stop the atrocious treatment of autistic and otherwise disabled people at the Judge Rotenberg Center (JRC) in Massachusetts. If not, I’m sorry to inform you that they are using shock devices on “patients” that have been labeled as torture by the United Nations (UN) Special Rapporteur on Torture.
This news wasn’t the only ingredient, but I literally had a nervous breakdown after learning that this was happening in my own country. It was like my brain just couldn’t process such horror happening now, here, in the United States. I think that horror is part of why the torture has been allowed to continue — people have a hard time believing it’s really that bad because it’s just too much, it speaks too loudly about the kind of things we’re still secretly allowing in our society.
But it’s real. These people are real.
And you can help make it stop — anyone reading this! — but especially those of you living in Massachusetts (or who can pass the news onto people who do).
In MA, there is currently proposed critical state-level legislation that could finally stop the torture, an amendment ending the legality of causing people with physical, intellectual, or developmental disabilities pain in order to punish or teach them. If passed, bill H. 180 will ban aversive techniques like those used at JRC, banning procedures that cause “physical pain, including, but not limited to, hitting, pinching, and electric shock” and denying “reasonable sleep, food, shelter, bedding, bathroom facilities, and any other aspect expected of a humane existence” — atrocious treatment that should have never been permitted, or at least been put to a stop a long, long, time ago.
Hopes have been raised with similar bills before, but the state legislature has tragically failed to get them passed. It’s time for leaders to take this issue as seriously and get it done. To help raise pressure, support, and awareness, the Autistic Self Advocacy Center (ASAN) is organizing a Day of Action on May 22nd, something people in MA and beyond could help make a success.
Here’s the scoops:
Firstly (since there are more of you), if you aren’t a resident of Massachusetts, share this call to action soon and frequently! Get on social media to share links/info — ensuring that you’ve tagged #Massachusetts as well as #StopTheShock so it has a better chance at reaching resident eyes. Extra doses on the 22nd. And encourage MA residents to participate to take a couple of minutes to contact their senators about this crucially important bill. (And keep sounding the #StopTheShock alarm after the 22nd, the FDA is someone else that can act and just…isn’t.)
My name is [your full name] , and I am from [your city] . I am a constituent of [Senator/Representative NAME]. I’m calling to ask [Senator/Representative NAME] to support H.180 to ban aversive conditioning, or using pain to punish people. Aversive conditioning is harmful and not effective. Plus, Massachusetts is home to the only institution in the country to use electric shock devices for aversive conditioning on students with intellectual and developmental disabilities, a practice which has been classified as torture by the United Nations. This bill would ban that and keep all people with disabilities safe. Can I count on the [Senator/Representative]’s support for this bill?
This Day of Action will also be an in-person event at the Massachusetts State House! So, if you’re able, please join local protestors on May 22nd to speak with legislators’ offices in-person and raise awareness about the fight to #StopTheShock. ASAN provided this link to learn more and register.
Whether you’re in Massachusetts or on the moon, please, please, please make some noise about #StopTheShock.
Advocacy movements are changing harmful norms, but they can’t do it alone.
Still from ‘They Live,’ a 1988 cult-classic, very clever take on societal conditioning, and great follow-up to reading about this topic. (Image via letterboxd)
Social conditioning is a lot like air, we hardly notice it, and yet it affects every aspect of our lives.
It’s defined as ‘the sociological process of training individuals in a society to respond in a manner generally approved by the society in general and peer groups within society,’ and it looks like going to school, interacting with peers (especially “fitting in”), engaging with pop culture, adapting to work environments, etc. These things shape the way we view the world and interact with others.
And right now, Americans are learning that our “air” has some fiercely toxic issues.
Though there have always been Black advocates speaking up, nearly a decade ago The Black LivesMatter movement finally brought national attention to the fact that we most definitely do not live in a post-racial society (which has been clearly reflected in demographic statistics for decades) — and yet our public schools essentially teach that the ’60s brought equality to our country. Generations were taught that we’re “a nation that doesn’t see race,” learning that ignoring our racial differences was helpful; and this conditioning has led to continued societal disbelief and inaction in regard to the very real racial disparities in the US. It’s horrifying.
Then the #MeToo movement busted onto the scene in 2017, exposing the harmful misogynistic norms that women have been dealing with in America all along — and making a lot of us pretty furious about all the “sugar + spice” conditioning that basically trained us to put up with harassment and abuse, all in the subconscious pursuit of trying to be the “good girls” society told us to be.
And though disability advocacy movements haven’t yet caught the nation’s attention, we’ve been yelling for a very long time. From extensive issues with accessibility (for wheelchair users and beyond), massively-funded nonprofits that actually work against us (*ahem, Autism Speaks*), to a society rampant with inspiration porn in place of actually informing people about how to work with our different needs; to excessive government focus on “preventable illness” and little-to-none on the myriad of conditions that can’t be, resulting in a blame-the-patient culture that’s really hard to survive —we’ve got a lot to be upset about.
While developments like oodles of (brilliant) intersectional entertainment, advocacy movements regularly trending on Twitter, and increased diversity in politics are helpful and encouraging; we also need our societal conditioning to change in a structural way, in our government and healthcare systems, schools, workplaces, and how media is sourced and distributed.
Luckily, the evolution of societal norms is often a direct result of individuals speaking up. A paradigm shift is not only possible, it’s already happening.
For example, those same public schools teach young minds that Thanksgiving commemorates a peaceful celebration of unity between settlers and Native Americans when history shows that the opposite was true. And this propaganda is taught by teachers who are overwhelmingly white, with a lived racial experience that 4 in 10 Americans cannot relate to.
We need schools that teach actual, factual, history, and it needs to be taught by teachers who represent the demographics of the students in this country.
Now let’s pick on the media. Television and magazines propagate impossible ideals, corporate support/dependence, and harmful norms that serve to protect the status quo — which isn’t surprising since six white-male-ledcompanies control the vast majority of the media, often resulting in news coverage and bias that benefits those already on top.
The typical office space is also rife with room for improvement. The constraints of ‘acting professional’ usually have more to do with ‘not causing waves’ than treating colleagues with respect — and this conditioning serves us in the exact same way as the “sugar + spice” bullshite, helping to maintain the toxic status quo through unspoken demands like code-switching.
The effect of our present societal conditioning is that people are expected to “fit in” in order to move up in life, which is functionally racist, sexist, and ableist in application — ensuring that the people on top, stay on top. (And we’ve only talked about 3 offensive –ists harming our society! There’s plenty more.)
It might “make waves“… 😮 (‘They Live’ film still provided by Universal Pictures, via Fonts in Use.)
How to Help
Norms are changing on our screens, now it’s time to securely bring inclusive changes into the schools, offices, and community spaces of the United States. It’s time to check ourselves. And it’s time to speak up against harmful norms. Everyday.Everywhere. Luckily, the evolution of societal norms is often a direct result of individuals speaking up.
A paradigm shift is not only possible, it’s already happening. But it needs all of us.
Here are 6 ways we can help detoxify the effects of societal conditioning:
Learn, learn, learn. We need to educate ourselves in areas where we have societally-suggested knowledge gaps (or even misinformation), carefully ensuring that what we’re reading was written by amember of the affected group. This can take some effort, but it’s worth it to ensure that what we’re reading is truly the perspective of the community affected.
Inspect our language. Our culture is rife with popular terms that are actually offensive to our many vulnerable demographics, and even well-meaning can people offend. (We’re practically trained to, via societal osmosis.) And it’s important to pay attention to aspects that aren’t usually considered; such as more subtle aspects of discrimination (ex. for ableism, hurtful usage of words like ‘crazy’ and ‘stupid’), phrases like “that’s just the system” that subtly stand up for the status quo. And it should go without saying, but this applies to every space — not just those where minority groups are present.
Request change from the leaders of our society, especially politicians and corporations. Be it an email to your local political representatives about the harm of letting misinformation masquerade as news, no longer supporting an offending corporation due to sexist advertising, or calling out a celebrity for the societal ramifications of an ableist action; individual complaints add up and are often (eventually) appeased.
Request change. Again, individual input matters! When enough of us ask for changes in respect to well, respect, community and company leaders have to respond. And there are now training programs to help educate employees, students, and communities on how to better accommodate one another, so why not encourage one?
Speak up when you’re affected. We need to speak up when we’re hit by the negative outcomes created by societal conditioning, or it will seem like “we’re fine with it.” If a teacher only calls on the white kids, if women in your office are paid less than men, if you’re being treated as if your disabled needs are irrelevant, or anything else of that nature — now’s the time to speak up.
Learn to welcome the different. Even when we try not to let it, subtle-yet-constant conditioning affects how all of us see the world, often creating anxiety around allowing new experiences and people in. But in addition to being the inherently more kind thing to do, diversity has proven benefits; the more perspectives, the more coherent the collective understanding will be.
Inclusivity, attentiveness, and compassion in regard to our differences need to replace the societally-pervasive dinosaur mentality of “that’s just how things are done.”
If you visited a zoo, and a gorilla started talking to you, what do you think they’d say about humanity? Think they’d be cool with the modern state of affairs?
According to Daniel Quinn, author of 1992’s award-winning Ishmael: An Adventure of the Mind and Spirit — the answers are a whole lot, and hell no.
Courtesy of Giphy
Ishmael features a man being taught about the world by a gorilla, one who divides humanity into two types: the Leavers and the Takers.
The first philosophy puts humans within the web of nature, working consciously to only take what they need; and the other puts humans as the world’s ruler, free to take whatever we can.
If the events of 2020 have left you questioning the way our society does things, or are interested in living a more conscious life — this should be your next read.
Here are a dozen (very hard-to-narrow-down) quotes from the book:
“The premise of the Taker story is ‘the world belongs to man’. … The premise of the Leaver story is ‘man belongs to the world’.”
“And every time the Takers stamp out a Leaver culture, a wisdom ultimately tested since the birth of mankind disappears from the world beyond recall.”
“I have amazing news for you. Man is not alone on this planet. He is part of a community, upon which he depends absolutely.”
“The obvious can sometimes be illuminating when perceived in an unhabitual way.”
“You’re captives of a civilizational system that more or less compels you to go on destroying the world in order to live… I think there are many among you who would be glad to release the world from captivity… This is what prevents them: They’re unable to find the bars of the cage.”
“The world of the Takers is one vast prison, and except for a handful of Leavers scattered across the world, the entire human race is now inside that prison.”
“Donald Trump can do a lot of things I can’t, but he can no more get out of the prison than I can.”
“They put their shoulders to the wheel during the day, stupefy themselves with drugs or television at night, and try not to think too searchingly about the world they’re leaving their children to cope with.”
“Diversity is a survival factor for the community itself. A community of a hundred million species can survive almost anything short of a global catastrophe.”
“We’re not destroying the world because we’re clumsy. We’re destroying the world because we are, in a very literal and deliberate way, at war with it.”
“The mythology of your culture hums in your ears so constantly that no one pays the slightest bit of attention to it.”
“I think what you’re groping for is that people need more than to feel scolded, more than to be made to feel stupid and guilty. They need more than a vision of doom. They need a vision of the world and of themselves that inspires them.”
Can you envision a version of yourself you find inspiring?
…and the valuable lessons I learned from the experience.
Originally published in the Medium publication, The Ascent. If you’re a member over there, I sure appreciate claps as that’s how we’re paid. (You can do 50!)
It was a long and tumultuous journey that led to me living in a semi-functional 25-year-old Camry for the end of 2017, and much of 2018.
It was also wildly unexpected.
I’d graduated college with a decent GPA, had a semi-impressive career in marketing, threw charity fundraisers, volunteered and held positions on non-profit boards, cared for my people, and made sure they knew it — I had trouble managing sometimes, but did alright and was giving life my all.
If something happens to you and you proverbially fall, even if it’s not your fault, the government — whom you’ve given 30% of your life’s income to — will not catch you.
And, up until my late-20’s, I seemed pretty healthy. I knew I’d had a cacophony of seemingly random issues my whole life, but they didn’t interfere with things too much and were basically hideable.
Then, in 2009, I attended a get-together that left many of us with H1N1, or the “bird flu.” (I didn’t have the wherewithal to get to the hospital, but several of their cases were confirmed.) After that harrowing experience, the aching body pain never went away; and while I’d always seemed to be more exhausted than those around me, it got much worse.
Unfortunately, I’d have been screwed even if I’d missed that pandemic, as there were already several other health issues going on.
In my 7-month “bed,” feeling like hell. (Image via Instagram.)
Physiologically, I was a walking timebomb.
For one, I was born with a B12 deficiency, which was prolonged by a homozygous MTHFR mutation. This means that my nervous system was slowly demyelinating, losing its protective cover, and causing random issues throughout my body.
Some of these are kinda funny in retrospect, like my not being able to taste salt very well, which led to me using it excessively. (In my teens, movie theatre coworkers once pranked me, dumping a “ridiculous!” amount of salt on my popcorn while I was away — I didn’t even notice. Mmmm.)
Others weren’t funny at all, and still aren’t.
These issues mostly had to do with mental health (and unhealthy coping mechanisms), but those issues had another massive factor — undiagnosed autism.
I wouldn’t know it until 2020, but I’m a great example of what’s presently called, “the female autism phenotype,” which can present in any gender. Though there are many differences in this presentation, the key difference is having a better ability to adjust to social situations by doing something called masking, essentially faking normal; which helps cope in the short-term, but also creates a host of mental and neurological health issues.
I have another mutation that makes me high-risk to pandemic flus, so the physical trauma of H1N1 certainly played a role, but that aching pain I had, often diagnosed as fibromyalgia, is common in women with autism.
I finally got my fibro diagnosis right before homelessness, about a year and a half after the B12 deficiency was diagnosed — them telling me, “132 pg/mL is very low, you’d have been paralyzed within a few months and dead within a year.”
By my B12 diagnosis, late 2015, I was already basically on bed rest, but stabbing myself every day with a form of B12 called hydroxocobalamin — after learning the hard way that the cheaper, more common, cyanocobalamine can lead to panic attacks, yikes — was leading to many of the random symptoms to drop away.
Things were starting to improve, but since I was missing key diagnoses, I didn’t know what I needed to do to heal. I regularly overdid it, which would result in weeks of make-you-cry pain — but I had no idea that’s what was happening because the symptom flares can come up to 5 days later. Plus, it’s also really hard to tell when I’m pushing it, and the weather is a huge factor; which took over a year of seasons to sort out on my own.
It was maddening. (To be honest, still is. Fibro is no freakin’ joke.)
I was in that bed for about 20 months.
I wish I could tell you that’s how long it took me to get better, but that’s how long it took me to lose the bed.
I did everything I could to earn, but I just couldn’t keep it up. I’d get more productivity hours as time progressed and my intensive wellness regimen did its thing, but that first year I had a marketing client that could afford just 9 hours a week; and I was repeatedly overdoing it trying to do that and keep up with life, my never-ending UI case (that looked statistically bleak due to my being young-ish, 33 when I applied), doctors appointments, prescriptions, etc.
When you’ve got very limited storage, organization is key. (Image via Instagram.)
Shit, just going to the grocery store very often led to public meltdowns that meant recovery days of no productivity and horrendously intensified symptoms.
I had a handful of good health days that coincided with an event or visitor so got to go out into my old world a few blessed times (usually aided by self-medicating with wine) — but the vast majority of my days, I was all alone in my isolated apartment, all day, all night. (Homelessness aside, I’ve basically been in lockdown since 2016.)
I regularly went several months without seeing a friendly face, or even talking to someone on the phone.
The idea of ‘peopling’ was nearly always just too much. Plus, I didn’t have very many friends in my newish city; most of the people who loved me were back home in Alaska, hundreds of miles away.
So, it was just me and me, alone in that apartment.
Me and me, trying to heal. Trying to get through physical therapy. Trying to remember to take too many pills that did too little. Trying to navigate systems that very literally make my head feel like it’ll explode. Trying to stay on an intense allergen-free plant-based diet on a teensy budget.
Trying not to cry all day, every day.
And trying like hell to avoid homelessness.
On that last one, we didn’t succeed.
The Bottom Falls Out
Three years later, seeing this still makes my body clench and my heart ache. (Image via Instagram.)
Though more (very part-time) clients teamed up with donations from friends, acquaintances, and total strangers, as well as my very patient landlord, to keep me homed for nearly two years — I lost that studio apartment in the summer of 2017.
I’d been told by several health professionals that moving from rainy Portland, Oregon to a drier and hotter climate would help my condition, so it seemed serendipitous when a friend I hadn’t seen in well over a decade offered to let me stay with her in Los Angeles county.
This outsider feeling extended to my night in a homeless shelter, where I learned just how privileged my upbringing, my life, had been.
That climate advice was spot-on, and my symptoms decreased dramatically in the hot summer weather; I don’t believe I’ve had to use my walker even once since the move, which I’d been largely dependent on. However, living in someone else’s home had the opposite effect on my undiagnosed autistic brain, and I went into what I now know is autistic burnout; leaving me holed up in my dark, quiet, A/C-free room most of the time.
The housing situation ended a week or so after I climbed out of that then-mysterious mental hole, and a couple of days after I was directed to Skid Row, where I discovered the public housing waitlist was 11 years — and there was a lottery to even get on the list.
Once it really hit me that it’d finally happened, that I was really homeless, my mental health became dangerous to my safety. Having lost my mother to her own hand and fearing the same fate, I checked myself into a mental health ward for the second time since the health crisis started. (But that’s another tale.)
And when my 72-hour hold was up, my 7-month misadventure in homelessness really began.
A Whole New World, Sort Of
From unable to leave home, to no home to go to. (Image via Instagram.)
In spirituality, we often say the phrase, “in the world, but not of it.”
Homelessness is kinda like that.
The outside-looking-in sensations of living with undiagnosed autism were infinitely multiplied by being in the same spaces as others, while also not being like everyone else in it — having a secret likely get me scorned, shamed.
I used face cleansing clothes and dry shampoo to help keep me looking like I belonged in our society, but I’ve never felt more like an outsider. (And I’ve felt like an alien my whole life, so that’s pretty bad.)
Though warmer, this outsider feeling extended to my night in a homeless shelter, where I learned just how privileged my upbringing, my life, was.
Every shelter I called was full, which is normal — if you haven’t caught on by now, our safety nets are broke, really effing broke — so I was lucky to get a spot in one. It happened to be Thanksgiving, which felt like an extra blessing, as I’d been fearing the holiday all alone. I was overwhelmed with the sensory environment, being around people, and my usual symptoms; so I mostly just listened as they talked.
Some shared their relief for a night off the streets, talked about how rough it can be. Many had been in-and-out of homelessness since childhood, so this was a pretty normal experience for them. I thought about my experiences of financial struggle growing up, which weren’t even in the same league. Things were scary sometimes, and it did have a long-term effect on my mental health; but I always had a roof over my head, I always had nutritious food to eat.
It helped set a grateful tone for the experience, after all, at least I had a semi-functional 1993 Camry to sleep in — providing shelter, storage, some privacy. Many of these (kind, funny, truly alive) women didn’t even have that. Plus, coming from a community where people were generally having an easier time financially; I had people helping me along, helping ensure I wasn’t literally sleeping on the street.
But, the attitude of gratitude can only go so far — it was still the hardest seven months of my life.
My days were spent trying to improve things, often working until the array of bodily symptoms and mental fatigue would start to make me cry. I didn’t have an unlimited internet plan on my phone, so most of my time at night was spent lying down in the back seat of my car using meditation and visualization to take myself to a more peaceful place.
Of course, many other nights it was just crying, feeling terrified, and wondering how I’d ever get out of that mess.
I always put the window shade “funky side in,” in hopes of being more discreet. (Image via Instagram.)
I’d eventually pull myself out of homelessness when the symptom relief of warmer weather coincided with a referral for a job working for someone who was incredibly understanding about the accommodations I needed, which wound up leading to regular writing work.
And in the summer of 2019, nearly four years after I originally applied for disability payments; I was awarded about two of those years, anyways — allowing me to repay loans that helped me survive, get a working vehicle, and finally move to a place that’s a bit more compatible with my extensive sensory needs.
I’m still disabled and life still has its challenges, but even 2020 had nothing on living in my semi-functional car whilst broke and horribly ill.
It’s been almost three years since it ended, but I’m just starting to feel like I’ve moved on.
It was both traumatic and eye-opening.
It changed me.
It changed me in negative ways, like increased C-PTSD symptoms; but it also changed my view of the world, my level of consciousness in regard to what really happens in our society, and my perception of what I can handle, what I can overcome. (Plus a real random one, just ‘cause life’s lessons can be like that.)
5 Lessons from My Homelessness Experience
My masking behavior is clear to me in the caption, which stings. This was a torturously dark night: an actually very broken foot, and a broken car — I was wrong about the low bill too. (Image via Instagram.)
I’m a bit of a badass. When you have an invisible disability, people are constantly questioning the authenticity of your condition, as if they’re thinking, “It can’t really be that bad.” (Without the #spoonie community all the gaslighting may have driven me off the edge.) It’d gotten to me, just as all the years of strife before had gotten to me. I felt meek.
Then, while homeless, I fell and shattered my foot, but walked on it for 10 daysbecause it hurt less than the rest of my body — so I figured I was fine.
That’s f**king fierce.(Fibro fighters and autistics are fierce in general, and society has no clue.) And I stayed pretty darn positive too, I remember a drug store employee commenting on how I was smiling despite needing crutches and thinking, “You have no idea what else I’m smiling through right now.”
There are heroes and helpers everywhere. There were so many times I hit obstacles that seemed completely insurmountable, but people continuously helped me out.
My home/car died repeatedly and a few people fixed it for cheap, one even doing it for free; and when I lost the apartment, friends, acquaintances, strangers donated enough to get the $500 car itself, then helped keep me in gas and internet-giving coffee purchases, as well as connecting me with creative work and donating occasional hotel stays that helped revive my spirit and get a good night’s sleep.
Despite being so far away from the people who care about me, despite it being a physically solo journey — I didn’t go through it alone. As the woman who created the great Fred Rogers would say, when faced with scary things, “Look for the helpers. You will always find people who are helping.”
But people who leave piss on public toilet seats are the scum of the earth. That’s it, that’s the lesson.
There are two Americas. And, even though it was still really effing hard, I’d been living in the comparably easy one. When you’re living in the easy one, things can “seem fine” for folks, but this is a result of the other America being overlooked, ignored, and full-on lied about. If you’re still in the easy one, please try to learn from advocates what it’s really like for people in poverty, and please call others out when they say disparaging things about those who need help.
There aren’t safety nets, not really. I thought there’d be some kind of program to help disabled homeless folks find stability, someone who could help me find an adjusted place in our society. But the homeless center heralded as best resource in LA county was more like a massive mostly-empty waiting room outside of mostly-empty offices that offered pretty normal apartment listings, and a communal shower. I couldn’t even get mail there.
I appreciated the showers, don’t get me wrong, and the humans there were wonderful; but the way “our federal safety nets” had been described to me all my life, I thought, you know, there was something to catch us when we fell. It’s not true. Our programs are archaic, under-funded, and frankly seem to be on the verge of collapse.
If something happens to you and you proverbially fall, even if it’s not your fault, odds are that the government — whom you’ve given 30% of your life’s income to — will not be there to catch you. That is a toxic societal myth, and retelling it has very dire consequences for our most vulnerable people.
Sending you good vibes in dealing with whatever scary thing life’s sent your way, may we all find and be the helpers in this world.
A happy day, homed at lasssssssst! Thank you for reading, hope your day’s a goodie. (Image via Instagram.)
Meg Hartley 