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So after reading yet another article about how the “wellness” (cough, puke) industry uses unregulated and non-factual claims to sell products to unsuspecting women while managing to completely ignore the reason women are searching for such things, followed by me writing fuming paragraphs in my head despite watching kittens play quasi-football, I figured perhaps I should write a blog post.
Warning: This post will not end anywhere near where it began.
Now that that’s out of the way, I am going to write that the reason women are susceptible to all this “self-care” bulls*** has nothing at all to do with self care. It has to do with the frustration, anger, hopelessness and exhaustion that comes from struggling in a society that pays women about half of what it pays men for the same jobs. That simultaneously treats women like fragile saints or pariahs with no space in between. That thinks it’s perfectly okay for women in two-income households to shoulder the majority of house keeping and child care while at the same time suspecting them to be incapable of making a large purchase without their husbands in tow, that will punish them by charging them more for things like car repair and loans because there isn’t a Y chromosome around to speak up on their behalf.
It’s a society where sexism, racism, ableism, and cronyism in hiring are allowed to continue unabated under the laughable euphemisms of “good fit” and “right chemistry” that really mean “looks like me.” Women watch men (and BIPOC watch whites) half their age with a tenth of their qualifications get promoted over them by people who move goal posts for the express purpose of hiring some frat brother or son of some frat brother, club member, etc. whose sole qualification is the white appendage in their pants. Where the word nepotism must be expanded to include “any white dude who knows another white dude.”
For the record, I’m not talking about all white men here. I’m talking about the ones who engage in these practices while pretending to do otherwise, and the ones who see this happening, and while they don’t do it themselves, still think that it isn’t a big deal because things “have always been this way,” which might be the stupidest reason for doing anything, ever.
I am blessed to have white men in my life who wouldn’t dream of passing on the best and most qualified person for a position just because they didn’t have the aforementioned appendage or didn’t have it in the right color. In fact, these men have at times expressed frustrated to me about having to deal with incompetent co-workers that were hired for the wrong reasons. They find the whole nepotistic system to be pretty much useless. And because these guys actually see what’s going on, don’t think it’s good for business or anything else, and don’t care what other men think about their decisions (another privilege reserved for members only), these men can paradoxically find themselves excluded from these good ol’ [white] boys clubs just because they had the temerity to buck the party line by hiring someone who didn’t look like them.
Er, isn’t this supposed to be a blog about autism?
Yes, it is a blog about autism. But I am not just an autistic. I am an autistic woman. I still run up against walls built by Eurocentric conceptions of autism develped from studies in male children that continue to pervade the psychiatric and research communities. I’m not allowed to be autistic because I don’t look right or act right; that is, act like the male autistics on TV who are superhuman geniuses that speak in monotones and don’t make eye-contact and flap around in crude imitations of the self-soothing behaviors autistics use to cope in a world designed for non-autistic people.
(That depiction, by the way, is complete fiction. It has nothing to do with the lived experience of being autistic. It’s not even a caricature; it’s totally made up out of whole cloth by non-autistic, so-called experts in autism.)
We live in a society that punishes people who fail to adhere to white, male, Eurocentric culture, and who think of that not as culture, but a default against which everything else is an aberration. Women are punished for not being dependent on men, for acting like men, for engaging in tasks originally performed by men, for being independent of men.
BIPOC are punished for not “knowing their place” alongside centuries of junk science claiming they feel less pain than whites and are naturally more inclined to violence, views that pervade modern society even though they are completely erroneous.
LGBTQIA+ people are punished for not falling into a superimposed cis hetero binary that even animals don’t adhere to.
Disabled people are punished when they don’t hide or compensate for their disability to make other people feel better, for making non-disabled people feel uncomfortable despite the fact that the fault for that discomfort lies in the abled person, not the disabled person.
I live in a society that has a narrowly inscribed default for autism that I am punished for not fitting inside. Even in responses to the articles I write about autism, parents of severely autistic children claim that I’m not “really” autistic and that I have no idea what “real” autism is. And when I try to point out that it is they, and not me, that have no idea what it is like to be autistic, that really rubs their fur the wrong way and then come the personal attacks.
I’m not saying raising an autistic child is easy. Having an autistic child that is non-verbal and/or developmentally delayed is one of the steepest challenges parents can face and I’m not suggesting their kids are like me. (But by the way, not every screaming child pulled out of a restaurant or movie is autistic. Maybe it’s time to cut these parents some slack.)
What I am suggesting is that at least some of the behavior they struggle with, the screaming, the violence, the stimming, is because the child feels not just overwhelmed but not understood. Do we validate the misbehavior of three-year-olds? No. But neurotypical three-years-olds can talk to us and we can listen to them and reassure them. Autistic children who aren’t verbal can’t tell their parents what they’re feeling. Their options for communication are all but non-existent, a frustration in and of itself that I can’t imagine any three-year-old coping with well. I wish ABA therapy focused on finding ways for autistic children children to communicate, even rudimentally, instead of shaming and punishing them for their understandable frustrations.
But in every situation I’ve mentioned in this post, the problem isn’t with the woman, the non-white man, the disabled child, the lesbian. It’s with a society that refuses to validate their membership. We aren’t mad at white, non-disabled, heterosexual men. We are mad because not enough of them understand that there remain historic and indelible barriers to entry that are only visible to the people they exclude, barriers that include decades of both explicit and implicit policies that kept non-white, non-male people from owning homes, from attending college, from accumulating wealth, from having access to good schools, friendly law enforcement, or towns where people don’t lock their doors, barriers that only people who don’t face them can remove. The woman isn’t mad at the useless guy who got promoted over her. She’s mad that this kind of thing still happens in this day and age and no-one in a position to change it seems to care, and there aren’t any vitamin supplements or bath salts that can fix that.
The autistic parent who dismisses me isn’t angry at me. She’s angry at a society that refuses to acknowledge the humanity of her autistic child, that doesn’t want said child in their schools, on their playgrounds, in their quarantine pods, at their birthday parties.
And that’s what this post is about. It’s about shifting the focus and blame away from the people who are harmed by this structure and on to the people who can actually do something about it. Women don’t need scented oils or rose quartz vaginal eggs or supposedly rejuvenating supplements or little pieces of fancy chocolate in gold foil wrappers. They need to be paid what they’re worth, promoted when they deserve it, supported in the home, and not criticized for being insufficiently female.
I don’t need adjudicate what autism is or isn’t. What I need is to be accepted for who I am by a society that has yet to fully acknowledge my existence. That’s what this post, and indeed, this blog, are all about.
For many, this pandemic has been an exercise is making do with a truncated list of unpalatable choices when it comes to work, relationships, and a social life. But this situation has plagued me and autistics like me for most of our lives. Autism consigns one to a life defined by a lack of choices in some of the most essential elements of modern existence, like employment, social group, living arrangement, and even who we want to be. The pandemic has offered neurotypical people a glimpse of what our lives are like, where we nearly always find ourselves in situations with too few options, all of which are suboptimal. The difference is that while neurotypicals are able to make a lot of these choices consciously, autistics are frequently unaware of how autism has blinded them to other options. Similarly, we struggle to navigate the boundaries imposed by a non-autistic society, not seeing them, or if we see them, not understanding them.
I attempted to pursue a career as a singer/songwriter starting in my twenties. This was long before I thought I might be autistic. Nonetheless, my autism meant I wasn’t able to discern when I was being manipulated and made me easy pickings for bad actors. My pathological lack of success in finding people who genuinely wanted to help me, and instead landing with those who just wanted to take advantage of me, demonstrates how autism imposed a lack of agency that was completely invisible to me. Not knowing what I needed to do meant I accepted at face value whatever anyone told me to do, with the lion’s share of those anyones and whatevers being dead ends.
Some suggested I move to a locale with more opportunities, like New York City or Nashville. I remember being terrified at the prospect. I could not conceive of how to handle arriving at one of these places with nothing more than a guitar and the clothes on my back. And although I was completely unaware of it, I was also terrified at the idea of being that far from my parents and sister, who made up the majority of trustworthy people I knew. These realities meant the choice to move somewhere else just wasn’t available to me. (A silver lining here is that in retrospect, it seems unlikely that I would have been successful no matter where I went, because my autism, and its associated gullibility, would have still been with me.)
There was a period around the same time where I washed out of a series of entry-level jobs, like receptionist, salesperson, server, that sort of thing. I would start out well, and then a few months in I would lose focus and start making erroneous assumptions and mistakes. I was drawn to people who seemed to get away with bad behavior, making it seem like bad behavior was not a big deal. I would mimic them, with inevitable negative consequences that were always surprising and always seemed unfair. The problem was me, but I not only didn’t realize it, I wouldn’t have known how to fix it even if I had.
I had the same problems socially, bouncing from group to group, doing well at first, only to have people suddenly start withdrawing from me and shutting me out after a few months without me knowing why. I landed with a group of addicts and alcoholics for whom social ineptitude was far less important than keeping the river of mind-altering substances flowing. They glorified their horrific lifestyles and there I was again, trying to mimic them, not having any idea what the consequences of it might be since I never saw anyone suffer any. I narrowly escaped some dangerous situations, and was lucky that after a few years, I got tired of the whole business, and ducked out and dumped my phone before anything life-changingly bad happened to me.
This meant I had to start over with another new group of friends. I got better at choosing associates as time went on, but my instincts remained unreliable and I was still plagued by bad actors when it came to music. I exerted myself to model good behavior instead of bad, but I didn’t have a scaffold to hang it on. It was just rote memorization and guessing. And my anxiety, no longer smothered by substance [ab]use, became immobilizing. For a year, I suffered from horrible stage fright and was so nervous I could barely perform in front of an audience.
I also still didn’t understand how friendships worked. I didn’t know how to maintain them, and I was afraid to ask for help after so many instances of being burned by people who exacted a toll for “favors.” In my late thirties, having exhausted every possible avenue I could think of and having failed to figure out what I needed to do to be successful, I gave up on the music career altogether.
This led to another social group change, this time with a new boyfriend and his friends and a new line of work, training to be a veterinary nurse. I had more success with this friend group–I’m actually still friends with some of them, including the now ex-boyfriend–but I still had to deal with regular screw-ups that required a ton of apologizing for things, some quite serious, that hadn’t seemed wrong to me. And while I was a good animal nurse, I was still a crappy employee. Another several years were thus invested in another dead end; not only could I not keep a job for more than a year (and often less), I was beset with pain and injuries that made it impossible for me to do the animal wrangling. These were a surprise, too. Many autistics, like me, are generally unaware of their bodies’ internal states. I just pushed myself till I broke, an occurrence I repeated almost a half a dozen times over the last thirty years, and for which I’m still suffering the consequences.
While the first few years with the boyfriend were wonderful, I stayed with him too many years after that because by that time in my life, while I wasn’t sure if I was autistic (although I had started considering it), I had learned that my instincts could not be trusted, and if a kind and loving person thought our relationship should be a certain way I assumed that he was a better judge of the situation than me. Also, he was the first genuinely good man I’d ever been with; someone who didn’t want to take advantage of me, or alternatively, have some major psychological issues of his own, and I was afraid if I left I’d never find anyone else like him. Our first real argument came after nine years, when I was finally able to tell him that I wanted something other than his preferred relationship parameters. We broke up not long after.
I didn’t start privileging what I thought was best for me–and not what other people told me–until my early forties. And while this seems late, I’m not sure I would have been able to figure out what was best for me any sooner. It wasn’t until a few years later that I gave myself permission to treat myself as a person of value. And while I look back on my life and resent the choices I made, the sheer number of instances where my autism kept me from accessing alternatives makes me doubt whether it could have happened any differently. Peers did try to help me, but I couldn’t tell the difference between help and harm. Other people were always opaque jumbles of seemingly unrelated attributes, and well-meaning or no, I didn’t understand them and they didn’t understand me. I didn’t figure out how to start seeking out people who did understand me until relatively recently.
Now I’m in a position where people ask me to explain their autistic children or loved ones to them, and it they’re almost always disappointed. First, since autism affects everyone differently, I’m inherently limited when it comes to specifics. There are as many different forms of autism as there are people on the autism spectrum. Second, the labels people fall back on to try to understand us or contextualize us, like high or low-functioning, verbal or nonverbal, hyperlexic or hypervisual, fail to express what the experience of autism is actually like, including that those labels are the least important differences we have.
What actually makes autistics different is that we experience our internal and external environments in a way that is completely unlike that of non-autistics. But most people don’t know what to do with this information. They want something they can grab on to, a context they can place themselves in so they “get” it. As a result, people who want me to “explain” autism to them are rarely satisfied with what I tell them. I’d rather say “I can’t explain it to you in a way you would understand,” but I have learned that is not something you should say to people.
Sometimes I pivot to the real world implications of autism, that the most important challenges autistics face are the ones imposed by a neurotypical society that punishes us or tries to force us to change when we think or feel or act in ways that feel natural to us. I don’t usually get very far with this, either. The idea that human instincts are not universal and that autistic instincts are vastly different from neurotypical ones, let alone that autistics have to completely suppress their instincts to relate to neurotypicals and that I am suppressing my instincts just to have this conversation with you–it’s all but inconceivable. Neurotypical people rely on their instincts to function. They struggle to imagine something as completely foreign as having to navigate life without them.
But this is how it is. Autistics are trapped in an indelible structure of ableist boundaries that we don’t understand, and this combined with our neurodivergence robs us of the ability to make choices neurotypicals take for granted, like how take care of ourselves, not just the basic needs like personal care or employment, but higher needs, like what kind of life we want to have, where we want to have it, and who we want to be in it.
We just want to be able make these life choices for ourselves. We want someone to explain our choices to us in ways that we understand, not shrouded in suggestions and metaphors and surreptitious judgements that render these choices invisible to us. We want to throw off the narrow confines imposed by employers, peers, families and caregivers of what is “normal” or “appropriate,” of needing to act and speak and even think a certain way so that we don’t upset non-autistic people, so we can work with them, so we can have relationships with them.
I never had a choice about any of those things. From a young age, I received near constant external feedback that the things I did and said, and even felt and thought, were wrong. As an adult, I so craved validating experiences that I created a completely opaque neurotypical mask that covered every natural thing about me, and made sure I was useful in some way to everyone I had a relationship with so they couldn’t stop speaking to me, or shut me out, or disappear. I’m only just now figuring out how to disentangle all that from the person I actually am, with that person still ensconced in the working draft phase. I’m only just now learning to forgive myself for the huge pile of screw-ups I accumulated because autism made it so I didn’t know what else to do; to forgive myself because in far too many of those situations, I didn’t have a choice.
Now that I’m allowing my autism to be a part of who I am, some have referred to me as a role model, much to my dismay, because I strongly advise against signing on for the crippling self-doubt that propelled me to learn to hide my autism so completely. I sacrificed my true self on the altar of a neurotypical ideal for over two decades; I am a poster child for unhealthy, self-defeating coping mechanisms. I’m still trying to figure out how to be social creature in this milieu while maintaining my self-possession, how to break from the negative self-talk that was a precondition for maintaining my social facade. I’m still working on accepting that my real self is not bad or wrong or worthless, after a lifetime of feedback to the contrary.
I sympathize with both sides of the ongoing controversy in the autistic community about whether we should or shouldn’t mask (hide) our autism. Because, you know, of course we shouldn’t have to…but if we want to have any choice in our lives at all, well, hiding is the only option. Our society just isn’t ready to accept people like us yet. It still doesn’t have a lot of good choices for us. Someday it will, I hope, even though it will be far too late for me, and maybe even the generation after me. But, hopefully, someday, because of the choices I’m making now, it will.
My latest blog post appears on the Neuroclastic online magazine! Click here (or below) to read it.
These events took place from Monday, October26th to Friday October 30th.
For the last two months, my search for a pain professional who accepted Medicaid and was willing to work with my autism medication regimen had resulted in my being disbelieved, belittled, insulted, and dismissed at every turn. During this time, my pain was poorly managed—if at all—and I dealt with constant anxiety. By mid-October, I was down to rationing the last few doses of the only pain medication I had left that didn’t interfere with my autism prescriptions.
The light at the end of this dark tunnel was a long-overdue cervical fusion surgery scheduled for Tuesday, October 27th at 11 AM. The surgeon would be able to prescribe medicine to handle the post-surgical pain, with the promise of reduced pain over the long-term.
But that isn’t what happened. This is what happened instead.
Monday, October 26, 2020
The day before my surgery was a mad scramble of emails, laundry, and housekeeping to prepare for being out of commission for a few days. My sister, TNC [Takes No Crap] Ape, had come into town Saturday to be my pain advocate and was bustling around on my behalf, learning where things were, how things were done. Captain Ape arranged to have a break from work to be our chauffeur. We had planned and for prepared everything, down to the smallest detail, but I was still so anxious I couldn’t sit still. “I have a bad feeling about this,” I confided in my sister, in Captain Ape. They offered reassurances that, while appreciated, were not able to quell this burgeoning dread lodged in my stomach.
My anxiety wasn’t completely unfounded, although I didn’t realize it at the time. A lack of notification from the surgeon’s office that my surgery time had been changed from 11 AM to 7:30 AM, which I never would have known about if the nurse hadn’t mentioned it during pre-op testing, set me on edge. Distracted and tense, I forgot I had a cell phone (actually, this happens a lot) and missed a late evening call and voicemail from my doctor’s office.
Tuesday, October 27, 2020
The day of the surgery, Captain Ape dropped off TNC and me at the hospital at 5:30 AM, two hours before the surgery, as instructed. But when we checked in at the COVID testing station, they couldn’t find me on the list of admissions. They let us through anyway, but upstairs in the surgery waiting area, the nurse escort for surgical patients also did not have me on her list. She told us to wait there while she made some calls.
She came back fifteen minutes later. “We couldn’t get a hold of your doctor” she said apologetically. After a pause, she added. “I’m sure he’s on his way.” I knew she was lying, but I clung to the hope that she was right. TNC and I sat down to wait.
After a half an hour, the nurse let us know she found me on the list—for 11 AM. I was too angry to respond and couldn’t stand to be in that waiting area another second. I abruptly got up and strode out, leaving my sister scrambling to catch up with me at the elevator. “So we’re leaving?” she asked.
“Hell yes, we’re leaving,” I snapped. Once we got outside, my sister called Captain Ape to come pick us up so we could wait at home until it was time to come back.
It was only then that I discovered the missed call and voicemail from the doctor’s office the night before. The message stated that the radiologist had “filled out a form incorrectly” and they had had to resend it, and they had moved my surgery back to 11 to give the insurance company time to send back confirmation.
I leapt from annoyed to furious, about the pointless loss of the three hours’ sleep, with myself for not checking my phone. I remembered I had assumed that no phone calls of importance would show up the day before my surgery, or at least, nothing that couldn’t wait another day or two. Changing my surgery time the night before? Yeah, no, not on the list.
We got back to apartment around 7 AM, but I couldn’t get through to the surgeon’s office until they opened at 8. Once I did, the surgeon’s assistant repeated what was on the voicemail, saying the radiologist had messed up the form, that they had corrected it and sent it back, and that they were just waiting for confirmation from the insurance company to proceed. I was still to plan for surgery at 11.
An hour went by. I called my surgeon’s office again but no one answered. I left a message in which my tone of voice was not well managed. Captain Ape had slipped out at some point; he returned with Starbucks. I wasn’t supposed to have anything to drink, but I was thirsty and my willingness to cooperate had declined precipitously. I gratefully accepted the decaf Americano (my favorite) and sipped on it while I waited. Another hour passed.
My call was finally returned a little after 10 AM. This time, the assistant admitted that, rather than a form mix-up, the insurance company had rejected the procedure as not medically necessary, and what had actually happened was that they had entered an appeal but hadn’t heard back. She insisted that the preauthorization had been approved “this past Friday” and that none of this “made any sense.” She then asked if she could reschedule my procedure for two or three weeks down the road.
I had been planning for this surgery—no, I had been counting on it—for over a month. I was looking forward to a few days off from worrying about work, about school, about taking care of the apartment and the pets, about where my next prescription was coming from. It was all going to be taken care of for me, by TNC and Captain Ape, by the surgeon who could hopefully fix my neck and prescribe post-surgical pain medication. There was even a possibility that, once I healed from the surgery, my pain would be lessened significantly.
And then, less than an hour before it was supposed to happen, it was all yanked out from under me, just like that, in a single instant. It was so sudden, so devastating, I could barely breathe. I wanted to scream, to cry, to hit something, to throw something.
The surgeon’s assistant then had the audacity to ask if they could just “bump” my procedure to a few weeks from now, like moving a surgery was as simple as changing a meeting date in your phone.
“No, I can’t do this in a couple of weeks.” I snapped. “I already had to push back work and school obligations to make room for this. My sister had to put in for time off over a month ago. If we don’t do this now, I won’t be able to do it until December.” My control over my emotions, already tenuous, slipped even further. I struggled to keep the tears from coming.
The surgeon’s office had been lying to me since the day before, stringing me along, until the god from the machine they were expecting failed to show up. I was expecting an apology, some accountability, maybe even some sympathy. None was offered.
“Well, if we could do Friday, would that be OK?” the assistant asked. I mouthed “Friday?” to TNC Ape, who nodded, and told the assistant that, yes, I could make that work.
“Well, we’ve appealed the decision and we’ll call you back to reschedule as soon as it goes through.” she said.
I was unable to keep the tears back any longer. “OK,” I mumbled softly.
After a long pause, she said “Sorry about all this.”
I was afraid if I tried to talk I would start sobbing in earnest. “Mm-hmm.”
“So we’ll call you back soon.”
“Mm-hmm” I hung up and fell apart.
My sister came over to the couch. “What’s going on? What happened?”
“The surgery isn’t happening.”
“Isn’t happening today or isn’t happening ever?”my sister asked.
“I don’t know. They don’t know. Nobody knows.” I don’t remember what she said after that; I was crying too hard to hear her.
After a few minutes, I crawled into bed, my phone next to me on the pillow on the off chance that the surgery still might go through, and cried myself back to sleep.
The phone rattled me awake a little while later. “Hi there, this is the __________ hospital. Is this Ms. Ape?”
“We just wanted to let you know that the insurance rejected your claim for being out of network.” Wait, what?
“No, my doctor’s office told me it was because it wasn’t medically necessary.”
“Well it says here you’re out of network. That’s all we know, ma’am.”
“OK. Thank you,” I responded. I hung up and went back to sleep.
I slept for a few hours, ate, and started making phone calls. I called my Medicaid caseworker, who was sympathetic but said there was nothing she could do—they only managed eligibility. They didn’t have any control over whether the provider authorized something or not.
I moved on to the insurance company’s customer service line, which was littered with menus for things I didn’t need and forced me to listen to their COVID preparations nearly a dozen times. The system kept dumping me back to previous menus or disconnecting me as I searched for the right options. The first person I got a hold of at told me I was in the wrong department and that I had to call back. Finally, after so many failed attempts I lost count, I managed to reach a human in the authorizations department. I explained what had happened, again fighting off tears, and asked if there was anything I could do to move things along.
The person on the phone pulled up and scanned through my account. After a few moments, she said the procedure had been rejected as not medically necessary and that it was being appealed, and that the appeal process took up to 30 days.
30 days? I forged ahead anyway. “So why did the hospital say I was out-of-network?”
“I don’t know anything about that. It just says here that it was denied as not medically necessary and is now under appeal. There’s nothing else you can do.”
I thanked her, hung up, and started sobbing again. I didn’t know who else to call, and even if I did, I was not up for yet another “sorry but I can’t help you” rejection. I gave up for the day. I don’t remember eating dinner. I don’t remember going to bed. I only remember I woke up crying in the middle of the night and that it took two hours to get back to sleep.
Wednesday, October 28, 2020
I was still red-eyed and exhausted the next morning, but after copious amounts of coffee, it was back to the phone. First, I called another surgeon I’d had a consult with the earlier in the month. He’d been kind and understanding about my condition, his office had an efficient and compassionate staff, and with any luck, maybe he would take my case and I could still get the surgery sooner rather than later. His office scheduled me an appointment for the next day, Thursday, October 29th.
As no pain medication was in the offing, I temporarily gave up on my search for a Medicaid- and autism-accepting provider and called back my original pain management practice, the one I had been seeing before I lost my health insurance, in hopes of getting enough medication to allow me to function until my surgery came through (or didn’t).
When I told the scheduler I would run out of medication before the end of the week, she miraculously found an appointment for me for Friday, October 30th. I would have to pay out of pocket, but I didn’t care. What had happened this week had left me so exhausted, traumatized, and desperate that I didn’t have any bandwidth left to think about anything else.
Thursday, October 29, 2020
Thursday, I drove to the surgeon’s office only to find out that I was at the wrong facility. “But they said it was in A_____ when I made the appointment,” I insisted weakly. Another staff member responded, “Oh, the S_______ office is also in A_____.” Notwithstanding how ridiculous that was, this wasn’t the first time something like this had happened to me; being autistic means you tend to miss “obvious” things and your assumptions are often wrong. I didn’t like it, but I was used it, and normally, I would have just handled it.
But that day, still drained from the previous days’ events, I didn’t have enough energy to deal with another setback. In fact, I didn’t have enough energy to summon any response at all, appropriate or otherwise. I just stood there, frozen, at a loss for what to say or do next. The other office just wasn’t going to happen; there was no way I’d be able to interpret a new set of my phone’s GPS instructions. Even just rescheduling felt like more than I could handle.
The receptionist saw the look on my face, or perhaps the lack thereof, and told me to wait a moment while they called the S_______ office and got the surgeon on the phone. Once they did, they relayed that the surgeon said he would not perform the surgery; he didn’t think it would help my pain, which he asserted was atypical for the type of damage I had.
Yet another rejection. My heart sank, and tears started to well up again. I held myself together—barely—long enough to thank them and get back to my car.
And then I started crying again. There was nothing else I could do. The grim reality of my situation, that the surgery wasn’t going to happen any time soon, if at all, finally set in. I sobbed the whole drive home.
Friday October 30, 2020
The pain appointment on Friday had the distinction of being the only interaction with a medical professional that resulted in a positive outcome that week. In fact, it was the only positive interaction I’d had with anyone in the medical community since before my insurance had run out three months before.
I briefly brought the NP up to speed on what had happened with my surgery. Then, I explained what had been going on with my search for a pain practice that accepted Medicaid and how dismissive those I’d tried had been about my autism. I stressed that medications that interfered with those I took to manage my anxiety and sensory sensitivity were off the table. I said that I understood that this meant diverting from usual protocols, but that I wasn’t the usual patient.
She nodded, echoed what I said back to me (another first), and scanned through my file on her laptop. “This much short-acting medication, you’re right, it’s not what we would normally prescribe, but it looks like in your case we have to throw the book out and just go with what works. For now, let’s just put you back on your regimen from before.”
I nodded. “OK. Thank you. That would be wonderful. Thank you.” She sent my prescriptions to the pharmacist and I picked them up later that afternoon.
But by then, I was completely used up. I never got those days off, from worrying, from advocating, from dealing with all the indignities one suffers at the hands of the American health care system. Instead, I’d had the week from hell followed by being unceremoniously dropped back where I was before, to a life inscribed by pain and anxiety, back to being disbelieved and dismissed, with medication that barely helped and a backlog of work.
Back into that dark tunnel, but with one difference. The light I had been working towards was gone.
While I was fortunate to finally get back to my original pain treatment protocol, the physical damage resulting from two months of anxiety, loss of sleep, and little to no pain control, plus a week of extreme stress, was not so easily undone. My pain remained intense and unrelenting for a week and a half while the medications built back up in my system. It has been over two weeks and it is better, but it remains worse than it was before.
The psychological fallout took its toll, as well. The week after the surgery I was a zombie, unable to concentrate, unable to write, forcing myself to do my chores through a mental exhaustion that was almost palpable, and sleeping ten or more hours a night. What had happened to me was so unbelievable, so cruel, I couldn’t get past it. I hovered near tears for days, trying to process, trying to find something positive about it, and failing at both. The surgeon’s office has yet to call me back. If the procedure isn’t approved, they probably never will.
Two Weeks Later
Just when I thought the surgeon’s office could not have possibly screwed this up any worse, I got a packet a couple of days ago from the insurance company about my case, with copies of what the surgeon’s office had sent them for the preauthorization, authorization, and appeal.
For posterity, the surgeon’s office had led me to believe that the that the denial was the radiologist’s fault, and that both the denial and appeal had occurred Monday, October 26rd.
The packet, however, told a different story. The real story.
First, my preauthorization went through on Monday, October 19th, not Friday, as the assistant had claimed, and included a report of severe neck and upper back pain, an affirmation from a second surgeon that surgery was strongly recommended, and a diagnosis of encroachment leading to nerve impingement in the C5-C6 vertebral space.
The authorization did not contain any of those items, but that wasn’t the worst part. The worst part was the date, of both the denial and the appeal, as indicated by the dates on the faxes the office had sent. It wasn’t Monday, October 26th.
It was three days earlier. It was Friday, October 23rd.
The office had known about my denial since Friday afternoon and didn’t say a word to me about it for three days.
Three days. It may not seem like much, but for an autistic, three days to get used to the idea that my surgery might have to be postponed would have made such a world of difference that words fail to encompass it.
And here’s where people’s total ignorance about autism is especially poignant. Change is extremely difficult for autistics, exponentially more so than for neurotypicals. We need time to mentally prepare for changes, even positive ones. Those three days would have completely altered this experience for me. I would have been upset at first, yes, but by Tuesday, I would have been prepared for a possible negative outcome. To deny a normal person that time to adjust was already misguided, at best. But to deny it to someone on the spectrum? It was downright cruel.
As of this writing, the surgeon’s office has yet to own up to a single mistake. They changed my surgery time weeks before my surgery and didn’t tell me. The claim was denied and they didn’t tell me. The reason for the denial was due to their own failure to include the right information, and they didn’t admit to that, either. Even when they told me the “truth” about what happened, that had been a lie, too. There has been no formal apology, no sympathy for what they put me through, not a single indication that they felt in any way responsible for what had transpired.
It remains to be seen whether my insurance will or won’t approve the surgery. I went ahead and sent in a patient appeal, which included the things the surgeon’s office had left out of their October 23rd materials. Even if it does get approved, though, I have no idea who will perform the procedure. Certainly, the practice that screwed up the authorization, failed to notify me of a denial they had known about for days, and has yet to be straight with me about what actually happened, is not an organization I trust to be accountable for my surgery and aftercare.
At this point, I’m not sure when I’ll have the surgery, or even if I will have it all. And there is no next step, no Plan B. My experiences since my health insurance ran out strongly suggest that, even among the few medical practitioners who accept Medicaid patients, the number of them who actually care about Medicaid patients is vanishingly small. To most of them, I’m just a statistic, a box to be checked, someone they could do the bare minimum for so they could get back to the patients that made them money.
Even now, over two weeks later, I’m still exhausted, mentally, emotionally, physically. I don’t want to do this any more. I don’t want to be this any more. I’m tired of spending hours on the phone, having to expend energy I don’t have to perform my neurotypical persona, only to be told, over and over, by everyone I call, that they can’t help me.
And this is about more than just last week. I have endured three months of being invisible, my concerns unheard, my problems unsolved, my well-being unattended. There doesn’t seem to be any space in the world we live in for people like me. I know I should keep pushing and advocating for myself and those like me but I’m tapped out. I wish I could just sleep and eat and watch TV, and not have to take care of anyone or anything any more, even myself.
But that’s something else that won’t ever happen.
So the latest hand-wringing over smartphones is that they remove the need for people to memorize things when using the GPS function for directions; that people don’t actually see and commit to memory their surroundings any more.
And by people, of course, they mean neurotypical (NT) people.
And I’m thinking, well, gee, that must be nice, not having to memorize things. So NTs no longer feel the need to memorize visual information when they’re making their way around. Good for them, I guess.
Aaaaaand that will never be me.
Because as an autistic, I am constantly memorizing and engaging in recall of memorized information to go about my daily business. Hygiene routines are memorized so I don’t have to rely on [nonexistent] tacit knowledge of what is appropriate. I memorize landmarks when driving along common routes (grocery store, etc.) just in case I forget whether I made a turn or not (yep, I actually do this). I teach myself to switch things on and off in my car in the same order so I don’t walk away with it still running.
I memorize things about people when I first meet them. Names are associated with objects, like pink-sparkly-phone Kate and American-flag-shoelaces George. If I don’t do this, I won’t remember the name and there is an excellent chance I won’t remember the face, either.
When I’m using my phone’s GPS, I memorize directions and how things look while I’m driving so that I don’t have to look away from the road while driving back. Autistics are lousy task-switchers. Having to interpret the information the phone is providing (silently, of course) takes away from my ability to concentrate on what’s around me. I mean, thank god my parents insisted I learn to drive thirty years ago so that I can operate a vehicle without thinking about it while I’m doing it, something that only took maybe ten or fifteen years to achieve, but I need every spare iota of mental faculty when I’m driving somewhere I haven’t been to a dozen times or more.
Interestingly, some things get memorized without my meaning to. Despite my total lack of facility when it comes to figuring out where I am in relation to somewhere else, I’m really good at memorizing where things are kept. Although faces slip by unmarked, my mind happily snaps a picture of my spice rack, the condiments aisle at the grocery store, and the reception desk at my pain doctor’s office.
I used to work at a large, multidisciplinary animal hospital with two floors and a half a dozen different storage spaces. Within a few months, I knew where every single thing was kept, even some things I never used and would never need, or those for other departments, because my mind is constantly printing and saving visual information on inanimate objects for later use. Pretty much everywhere I’ve ever worked, “ask TGA” was a common response when someone wanted to know where the spare whatevers were.
More important, my and other verbal autistics’ social skills are derived directly from memorization. We memorize social encounters and whether or not they were successful, and file that information for later use. Since intuitive social activity and communication is not an option for us, everything we do is based on some memorized social interaction or another–including those we observe between other people.
And (warning, seemingly unrelated tangent here) that’s one of the reasons I hate commercials. They show people laughing over social activities that are not funny and would not work in real life. Like stealing food from someone’s plate, or oops-on-purpose making them spill or drop something. Or, my new least favorite, writing “new friend check yes or no” on a gum wrapper and handing it to someone. I pray to god no autistic kid is watching that and thinking Oh, is that OK? Look, the other girl laughed. I should try that.
And that’s another problem. Nothing “looks” fake to us. The ways in which commercials fail to reflect real life are no problem for NTs. They take them as fiction as a matter of course, and advertising’s distortion of reality rarely rises above an eyeroll for minor annoyance.
We autistics don’t have that luxury. As I’ve mentioned before, nothing is fiction and everything is real. Commercials, posters, cartoons, memes, it all looks the same to us. Even when we understand intellectually that such things aren’t meant to be real, we can’t keep our brains from treating them as such, making it frustrating when we try and fail to employ these actions in real life and even more so once we realize how fake they are and how much of our lives we wasted thinking otherwise and trying to imitate them.
But back to memorizing. I’m never going to be in a position where I don’t have to memorize. In class the last two weeks, the articles have been all about visual rhetoric and how [non-autistic] people are better able to absorb pictorial than written information, due to their facility with central coherence.
Ah yes, central coherence. That must be nice. I have exactly zero points of reference for this, and have been unable to disentangle my frustration about it from my response to the unit overall. Basically, visual information is nothing but a wall of stimuli for me that I can’t make head or tail of.
Let me use the example of a polling place.
Poll workers are given signs to put up to make sure people move through the polling place in a single direction. They also have lots of other signs up about which table to go to for sign in, what you need for proof of ID, getting your ballot, how to fill things out, what to do with your ballot when you’re finished, and which way to exit.
A lot of these signs are simply arrows, because neurotypical people will prioritize and categorize these as the most important automatically (speaking of things that must be nice). My brain doesn’t do that. It prioritizes text because that’s what is easiest to understand. Text is only so ambiguous (although there are exceptions). So all of the signs with text on them bombard me, while those without all but disappear. And even if I do see it, an arrow by itself is not the simple guideline for me that it is for NTs. It doesn’t say to whom it applies, what it points to, or when it should be followed. And sometimes, it’s not even pointed properly, because for NTs, its mere presence is all they need.
I was a poll worker for a couple of elections back in the nineties, before I realized how ill-suited I was to that sort of work. I remember obsessing over the signs, the arrows, arguing about where they should be, suggesting tape on the floor (yeah, that didn’t happen), and overall spending a lot more time worrying about it than the other workers did. Of course, there weren’t any problems because autistics like me would pretend there weren’t even if that wasn’t the case, and, of course, NTs had no trouble at all.
Think about all of the places we see these arrows. Grocery stores, department stores, driving. Imagine what your world would be like if they were enigmas to you, if you knew from experience that they were untrustworthy. Imagine how much harder it would be to find your way around, to know where the right place–and wrong place–was to be.
That’s my life. That’s why I memorize. That’s why I can never stop memorizing.
I swear I used to have more energy. I know I did. I never had as much as other people, but I definitely had more than I have had over the last decade or so (I’m in my late forties).
I used to be able to work around 30 hours a week and still hang out with friends on the weekends. I used to be a performer, singing, doing community theater. I used to not need a lot of recharge time, maybe a day here and there by myself, easily accomplished with busy roommates with lives. I used to live with roommates, as in two or three, believe it or not, something that now seems completely out of reach.
I used to be able to hang out with people for hours on end, to go to movies, to go out dancing, to have long conversations into the wee hours with peers about the nature of this or that.
Because I can’t do any of that any more. I’m not even close. It seems like a whole other person, a whole other lifetime.
Starting in my mid-twenties, I started borrowing from my cognitive fuel tank to hide things about myself. I started using some of that energy it to decide what I was about to say, more and more of the time. Then I realized I had to change the way my face looked, so I siphoned off some more to invest in managing my facial expressions, too. The more I learned, the more complexity I added to these activities, to account for small differences in people, in situations, in location. Responses developed into full-fledged scripts. Facial expression management became more fine-tuned as I added more and more subtlety.
Once these efforts started to happen automatically, I became aware that my body language was also off, so I started paying attention to that, too, especially when I was listening to someone or interacting with a group. Head up. Don’t pick at your skin or chew the inside of your mouth. Don’t cross your arms if you don’t have to. Face your body towards the person speaking. Don’t slump in the chair or lean away from them.
A few years after that, I realized my natural eye contact inclinations were wrong, so I needed to pull more energy for that, too, making sure I looked at someone when they stopped talking instead of away from them, making sure that when I was looking at someone, I looked away every 3 to 5 seconds or so (and yes, I still do that, I still count seconds when someone is talking to make sure I don’t make them uncomfortable).
As my strategies grew more advanced, I started reaping noticeable social benefits. I stopped putting people off. At some point, I’m not sure when, I became someone people wanted to be around. I even became someone people genuinely liked. I became someone some people loved.
It felt like I had stepped into sunlight after a lifetime of being trapped in a cave. Finally, people didn’t cringe around me, or disappear after a few weeks or months. People wanted be with me, wanted to touch me, even. Asked about me if I wasn’t there. Cared about what I thought. Would go out of their way for me if I asked them to. Even better, sometimes, they would ask me to go out of my way for them. I loved the warmth. I finally felt human. Paradoxically, the more energy I invested in being someone else, the more people seemed to appreciate who I really was.
For neurotypical people to see the person I feel like on the inside, I have to translate it to make it apparent to them in ways they will understand. As I became more and more skilled at this, I reaped more and more social rewards for it, for being “authentic,” for being honest about certain imperfections and vulnerabilities, and even the fact that I was autistic and investing energy in hiding my autism. You’d think that this would have allowed me to use less energy, but those choices increased the cognitive load, deciding when to say what was in my head because it was OK in that particular situation, and when to fall back on a social script.
That’s where I am now. Being a person in our society, a likable, even lovable person, I have it down to a science. So much of this happens automatically that it actually feels kind of normal.
But that energy has to come from somewhere.
The spoon analogy, used a lot in psychology circles, contends that everyone starts the day with a certain number of spoons of energy. Those of us on the spectrum, or with other neurodivergencies, have to pull a few spoons from what would normally be expended on typical life things, like working, to manage their neurodivergence. When I started masking my autism, over twenty years ago, my strategies were pretty basic and didn’t require more than a single spoon or two.
Now, however, a lot, if not most, of my spoons go to my neurotypical performance and managing the stress of being on a neurotypical environment. It’s no wonder that I can’t work for more than a few hours a day. In fact, seen in this light, it’s amazing that I can work at all. As I have become more and more employable, and more and more sought after, I have less and less left in me to enjoy these privileges.
Was this the right way to go?
I used to think so. I used to think that no investment was too large if it rendered me able to have friends and be around people. Now, realizing that the investment required results in being overdrawn a lot of the time, I’m not so sure.
I have traveled too far down this path to go back and do it another way. But the cost has been exceedingly high, and now, my productivity is nowhere near what it used to be. Even as I have become more adept, and thus a better spokesperson, I am so limited by what I have to do to be that person that I may not be able to invest enough energy in doing the work that comes with it, that I want to do, that I have spent this energy in making possible.
I created the term “Autism Paradox” to describe the catch-22 autistics face in the workplace, where they have to choose between not hiding their autism and being under- or unemployed, or hiding their autism for the sake of their co-workers and not being able to get accommodations because they look too normal.
But there is another Autism Paradox, that is even more harmful, and I am in it. The amount of energy I have to expend to hide my autism prevents me from having enough left over to enjoy the fruits thereof, like a regular job, or extracurricular activities, or going out with friends.
How many of us are like me, having perfected the mask, but at such a great cost? I’m often praised for my ability to look normal. It seems effortless.
It is anything but. And for that reason, I feel like–no, I know–people don’t appreciate what it costs me to do it. And I have no idea how to undo it, or even if that’s possible.
But at least now, I know what happened.
The African American History Museum was forced to take this down due to complaints about it. I have thus recreated it from pieces on the internet and am preserving it here for posterity. The image is downloadable.
When I was planning this trip, I thought I was psychologically prepared for the higher-than-usual amount of change and uncertainty that accompanies a vacation to a new locale and involves a group of family members, two of which are capable teenagers but remain under our supervisory capacity. I had been making these assumptions based on a line of thinking that included having gone to the beach almost every year of my life. Not this beach, but beach is beach, right? I’d managed solo beach trips to novel beaches (pre-pandemic, of course) before with no trouble at all. How different could it be?
While I’m making a list of unfounded assumptions, I will add that I had been laboring under the delusion that my meltdowns were now predictable, manageable, and in many cases, even avoidable. I had even gone so far as to assume (laughably so, in retrospect) that this phenomenon was pandemic- and location-resistant. That the pandemic might have been unusually taxing, or that such management was predicated on my ability to manage my surroundings and was buttressed by psychological and, when necessary, physical support from Captain Ape, never entered my mind.
And then, last night, the third night in a row where our dinner plans ended in a partial or complete cluster, well, that delusion went down like a sand castle at high tide. The presences of my sister, my niece, and my niece’s boyfriend were all irrelevant. I walked into the apartment with food that I’d had to drive thirty-plus miles and 45 minutes out of my way and back to get, dropped it on the counter, and promptly lost my s***.
Screaming, cussing, and door slamming were soon followed by being crumpled in a ball on the bedroom floor sobbing. After a several minutes of this, I sent my sister out to eat dinner with the kids. I did not, could not, leave the bedroom for almost two hours. It took over a half an hour before I could even stop sobbing, and a long bath and a phone call with an autism-sympathetic friend to get myself pulled back together enough to be able to finally leave the bedroom and eat some of the food I’d gone to such lengths to get.
Now having been thoroughly humiliated in front of my far too wise and accepting niece, who appeared to take the entire incident in stride, and her boyfriend, a wonderful young man who may or may not have ever witnessed an otherwise capable adult disintegrate so completely, I have decided not to go down to the beach with everyone else today. My relief when they left the unit was palpable, but I am still barely holding myself together.
The stress of the last four months, coupled with what should have been completely expected snafus that always accompany a hastily planned vacation to a new place, have shredded my self-possession seemingly beyond repair. It is now halfway through the following day I am not much better.
I can’t stop crying. I miss my apartment, my cats, and my significant other terribly. It is beautiful here and now I wish I were back home where I could crawl into Captain Ape and he would hold me tightly enough to keep me from flying into pieces, which is how I feel right now, as though all my pieces are scattered everywhere and I don’t have the energy to go and get them all, never mind try to put them back together.
All this time, during the pandemic, the trip here, being here, I’ve been expending more and more mental energy to hold myself together, not realizing that the cost of such efforts had been increasing exponentially. Last night, the tank abruptly ran dry. And my erroneous assumption that I possessed strong enough faculties to conduct myself like an NT even in the most stressful of situations disintegrated right along with me.
This failure now looks utterly predictable and I am bouncing back and forth between berating myself for having the meltdown in front of the teenagers and berating myself for not seeing it coming. I could have leaned on my sister more and I didn’t. I saw myself running low and pretended that running low was not inevitably followed by running out. I figured I just needed to hang on through whatever happened and I would be OK.
But hanging on takes energy, and I didn’t have it. I forgot that I have to spend it hiding my autistic tendencies (interpreted as rudeness by NTs) from my niece and her companion even though they know me well. I forgot that I have spend more of it interacting with NTs to get things done. I forgot that being someplace that wasn’t familiar, no matter how pleasant, would be an additional drain.
As such, I forgot to build in opportunities to refuel. I decided, as I have so many times before, and always to my detriment, that I could function just as well here as I did at home. That I could be just as resilient as my non-autistic sister.
Fail, fail, and epic fail.
And that’s what I feel like. I feel like an epic failure. I should have known better, I do know better, and yet I managed to fail myself at every possible level. As I sit here trying to weave back together something amounting to a functional level of self-esteem, I find myself too humiliated and too ill-equipped to do so. I need to be alone and I need to be held very very tightly, a logistically problematic situation, to say the least.
My sister, a licensed social worker, just walked back into the unit to get some lunch and found me in this state. She took one look at me and, ahem, strongly suggested I take some of my anti-anxiety medication, something I have refused to do in the past. I don’t like benzos. I don’t trust myself to know when I need them–or more accurately, when I don’t need them, so my solution up to this point has been to ignore them completely, a solution that, in retrospect, now appears, ahem, misguided.
She was expecting pushback and had already launched into her pitch when I said yes. In the first self-care prioritizing decision I have made in I don’t know how long, I agreed with her assessment that I needed some help digging out of this rut I had worn myself into in less than a day. She was right; I wasn’t going to be able to calm down without help. I took the pill with the dregs of coffee remaining in this morning’s mug.
About a half hour later I was able to eat, change out of my pajamas, and head out to a discount store to pick up some necessities we had forgotten to pack. On my way up front to pay, I passed a display offering low-priced weighted blankets. I pushed my cart back and forth around the display three or four times trying to decide if it was worth the expense.
Finally, I slid it off the shelf and into my cart. Self-care decision number two. Hopefully I can keep this going for the rest of the trip.
We did the right thing. We washed our hands, didn’t touch our faces (we think), limited grocery trips to once a week, stopped seeing our families, our friends, our loved ones. We wore masks religiously. We practiced patience even as our anxiety was ratcheted up daily by new cases, new hospitalizations, new deaths that used to be front page, headline news and now have become depressingly routine and are sidelined in favor of political antics in an election year.
And it didn’t matter. Because a few people–vanishingly few, if you think about how many people there actually are in this country (~330 mil)–decided that their own pleasure, their own needs, their own discomfort, were more important than saving lives and stopping the spread of a fatal disease against which no-one has any immunity at all. They and their selfishness ruined it for the rest of us. And now we have to start over. At a time when all I want to do is wrap my arms around my parents, who had a father and brother pass away while all this was going on, I can’t, and not only that, I have no idea when I will be able to again.
I miss my parents, who are not young and live less than a half hour from here, and who I was used to visiting every few weeks or so. I have not seen them, other than by Zoom, since late February. I miss my friends–I am autistic, I don’t have that many close friends–they are my lifeline, my translators, my cheerleaders, my links to a neurotypical world that I only partially understand. With the unique clarity of emotionless observance bestowed by my autism, this whole mask-wearing sturm and drang is seen for the patent absurdism it is. Get over yourself, people. Wear the damn mask. Even Captain Ape, my significant other who leans more conservative than me, has been wearing a disposable mask without complaint since March and recently purchased a cloth one for himself for long-term use.
And it doesn’t matter. None of it does. We are right back where we started. I presciently cancelled a vacation to the Eastern shore in late May, calculating for a rush of self-centered vacation-goers that would descend on the area over Memorial Day weekend and cause a re-closure therein, and sure enough, the area has now enacted a strict quarantine. Instead, a few of us will be going to a little-known beach community in our own state, minus our parents, for a week. This is a somewhat inadequate substitute for the usual two-week mass-family get-together we enjoy at a popular beach town that is a home-away-from-home for us, but we are blessed to be able to do it and I am grateful, and, honestly, a little terrified, that even doing this constitutes an unacceptable risk.
But all my careful planning doesn’t matter. My parents, our loved ones, all the vulnerable people we know and care for and worry about, they are at an even higher risk than they were four months ago, now that the virus has reached in to every community, large and small, to manhandle its population with absolutely no regard for politics, with even freer rein in communities with fewer health resources. Nothing has changed since April.
No, that isn’t true. Now, things are immeasurably worse. We had a chance to fix this and it was squandered by a bunch of self-centered a**holes falsely claiming that their freedom to infect others and get a haircut and go to Applebee’s was more important than everyone else’s freedom from disease. These people like to claim that asking someone to wear a mask is “forcing” people to do something. They fail to understand that not wearing a mask is forcing every single vulnerable person, and every single person who lives with or cares for a vulnerable person, to stay away from whatever gathering these non-mask-wearing, self-absorbed pricks decided to spread their spit around.
And I am angry, and I am tired, and I am frustrated, and I want to scream and cry and hit something, a lot of somethings, (or someones, let’s be honest) as hard as I can. Even though I didn’t spend all that much time outside the home or hanging out with my friends before all this, it was far more than nothing, and now it looks like nothing is how it’s going to be basically until I get it and maybe recover or until there is a vaccine.
Now, we who did what we were told, who followed the advice of health experts, are being punished for other people’s self-absorption. We are paying the bill for their profligate activities. I can’t even visit my faith community right now because they refuse to force people to wear masks for meetings and fellowship. Because they claim that they are open to all and can’t tell anyone what to do, conveniently ignoring the fact that by not enforcing mask-wearing, they are excluding a significant number of people from receiving the comfort they, and I, incidentally, need.
That’s right, people. Not wearing a mask is a gesture of exclusivity, not inclusivity. And if everyone, including you, had done the next right thing from the beginning, we wouldn’t be in the mess we’re in right now. Because of you. You, you non-mask-wearing, self-centered m-f. This is all–yes, all–your fault. I can’t see my parents because of you. I can’t go to a church basement because of you. I can’t go back to grad school in person in the Fall because of you. My income is suffering, and will continue to suffer, because of you.
We all made sacrifices. You refused. We did the right thing. You didn’t. And because you didn’t, we have to start all over, at a time when most of us are ill-equipped to endure another four months of solitude.
Your insistence on personal freedom has taken away everyone’s else’s personal freedom. I hope it was worth it.
Photo by Markus Spiske
One of my opportunities as a professional editor for primary research articles and dissertations is they are often primers on subject matter on which I am not an expert. A dissertation I edited last year introduced me to the concept of White Culture.
I had never thought of myself as having a culture. I had often, in fact, bemoaned the fact that I did not have a culture of my own in which to ground myself. I leaned on my Italian heritage and sought out related influences, modeling myself after the great-great aunts and grandmothers I’d been told stories about growing up. I remained blind to the fact that I was already steeped in a narrow and inscribable culture that exerted considerable influence on my thoughts, feelings, and actions. I remained totally unaware of this influence not just on what I did, but who I imagined myself to be.
What is White Culture? Here are a few items:
The elevating of quantitative data and information in the form of observable proof and outcomes supported by hard evidence, and an accompanying distrust of information lacking these underpinnings.
The willful siloing (separation) of public institutions from one another, including faith, community, government, accountability (the law), and medicine.
The privileging of an individual’s needs and autonomy over the well-being of the population as a whole. This can be seen in middle to upper class white families spending money and using nepotism to place their own children in the best possible situations at the expense of children from poor white and non-white families.
The prioritizing of individual wealth over societal good, as evidenced by anti-government rhetoric and anti-tax propaganda.
Well-defined social strata and a mistaken belief that it is easy to move among them despite, paradoxically, hard evidence to the contrary. This results in the demonizing of the bottom rung as lazy or stupid, and for those born into privilege to assume their financial fortune is based on effort rather than luck.
Black and white, us-versus-them, zero sum attitudes towards conflict and the double standards that naturally arise out of this viewpoint.
When I learned about these things, courtesy of a dissertation I edited followed by a rhetorical theory course, I suddenly saw them in my concept of self-worth in stark relief. Worship of hard data? Check. Separation of institutions? Check. Individualism? Check. Black and white thinking? Check. Distaste for those less fortunate than I? Check. I have been working to dismantle that last one for years, but with only mixed results, and less accountability than I should have.
Since I became aware of these things about myself, I have struggled to extricate them. I have reassessed my distrust of non-empirical data, although I have not been able to shake it. I have exerted myself to learn the different environments and circumstances that conferred or withheld opportunity and to understand and respect the individuals in them and their belief systems, even if I disagreed with them, also with only limited success.
It is a work in progress and will be for some time. And the fact that it is such hard work has shed light on why it is so hard for neurotypicals to understand autism. Neurotypicals struggle to understand other neurotypicals with opposing belief systems. No wonder they cannot wrap their heads around not just a different belief system, but an entirely different way of perceiving and understanding reality. Neurotypicals assume that their conception of reality is a default against which others are measured, rather than a single option among a broad range of them. The idea that one’s mental processes are not a default but a specific type that not everyone has is a heavy lift, no doubt about it.
I don’t want to make this post about my autism, though. I want to speak to this moment in time regarding civil rights. I want to discuss how White Culture has perpetuated systemic racism. And for the record, systemic racism does NOT mean people in the system are racist. According to the eloquent Radley Balko*, it actually does not speak to the beliefs or actions of the people in the system at all. Instead, Balko affirms that systemic racism refers to the “systems and institutions that produce racially disparate outcomes regardless of the intentions of the people who work within them.”
There is a tendency among whites, myself included, to assume that our culture [sic] is a default, or an absence of culture. This, in turn, leads us to assume we are normal and that any aberrations from our normal are just that–aberrations. When we see these aberrations, the natural tendency is to assume that they arise due to a lack of experience or intelligence, and to subconsciously (or consciously, in some cases) think of people in the aberrational culture as less human, less important, less feeling, and less worthy of respect than those like oneself.
This has its roots in White colonialism. White colonialism entails a recognition that the lion’s share of colonial history we are taught was written by white colonists, and that the experiences of the colonized were only described from a white colonist’s viewpoint. It seeks to at least partially rectify this by seeking out and highlighting these experiences in the voices of the colonized themselves.
White colonialism produced what is called the “colonial gaze,” the vantage point from which colonizers looked down upon the purportedly less evolved and less intelligent natives of whatever land they took possession. This perception allowed colonials to treat the natives in one of two ways: to try to “fix” them by imposing White cultural ideals upon them, or to view them as animals and treat them as such. While there were a few notable individuals who pointed out the ethical problems with both these activities, these individuals remained on the fringes, unable to make a dent in the status quo.
We can draw a straight and uninterrupted line from the colonial gaze to the mistreatment of non-whites that is perpetuated throughout White cultural institutions, including:
Medicine Blacks were originally thought not to feel pain at all, and are still considered to feel less pain than whites by a plurality of doctors and nurses.
Government and public service Acts to limit imaginary “voter fraud” disproportionately disenfranchise non-white voters. Gerry-mandering persists in most states wherein minority votes are concentrated in a single district to limit their representation and influence on policy.
Immigration Incarceration and inhuman treatment of non-citizens crossing the border persists, with immigrant families and children in cages and denied food, water, bathrooms, and medical care.
Law enforcement Blacks are three times more likely than whites to be injured or killed by police.
The court system Blacks are five times more likely than whites to be incarcerated and for longer periods of time than whites guilty of the same offenses and with the same histories.
Education. See racialized tracking, a system wherein non-white students are penalized more harshly for misbehavior than the same behavior in white students and shunted away from accelerated courses and opportunities that whites are preferentially shuttled into.
The financial system Banks charge non-whites between 5 and 9 points more on their loans than equally-qualified white borrowers.
In fact, if you Google “Racial Disparity” you’ll get hits ranging from Cliff Notes to YouTube to the Science Direct primary research database.
If this isn’t evidence of systemic racism, I don’t know what is. And as much as this phenomenon bothered me, I never examined my own bias and prejudices. I never took action against systemic injustices. I told myself the problem was simply too big to solve to excuse this lack of action. But the closer I examined my natural responses to differently colored people, the more previously unrecognized bias I uncovered.
I realized that I assumed that black people were “stronger” than white people physically and mentally.
I realized that I assumed all blacks thought and felt the same way about all political issues.
I realized that I assumed political beliefs I disagreed with were the outcomes of lazy thinking, rather than natural, evidence-based conclusions borne out of one’s circumstances.
I realized that I assumed that loiterers were criminals and not individuals in bad circumstances trying to find work.
I realized that I assumed that blacks who wore their hair, dressed, and spoke “white” did so by personal choice, and not because they were forced to in order to succeed.
I realized that my efforts to learn more about other whites from different communities were not matched by efforts to learn more about non-whites from different communities.
I realized that I had never thought twice about the fact that all of my interactions with police were completely non-violent and never escalated beyond a citation.
In fact, when I was pulled over in college going 95 in a 65, something that would have surely resulted in a beating and arrest if I were a black man, all I got was a court summons; I was then allowed to drive home. No handcuffs were employed. In court, I got probation and a fine. No jail time. The extent to which this experience reflected the color of my skin did not occur to me until literally the last few days or so.
I’m so ashamed of my contributions to systemic racism, of my privilege in ignoring certain laws without fearing for my life, of taking for granted that I get preferential treatment from the system because I am white, and I look and sound white, and that even if I chose to dress and speak differently, I could make that choice without losing access to my privilege.
It’s upsetting, but it’s also motivating. I’m not stuck thinking this way; I can change it. I can change my behavior. I can check my privilege before responding. I can apply a White Culture and white privilege prism to my life to root out personal bias. It’s hard and it takes a lot of mental bandwidth, something I don’t always have a surplus of, but now that I have realized these uncomfortable truths about myself, it is my responsibility to address them.
It may be that my understanding of autism and how it differs from a supposed default neurology has made me more open to the idea that there really isn’t a default anything, be it thinking, perceiving, looking, sounding, acting, feeling, or knowing.
It thus follows that there is no such thing as a default culture, body, or mind. There are countless different versions of all of these, even among different individuals we lump into categories like black, conservative, disabled, autistic. Dispelling the seductive myth of the default is an important first step towards removing systemic entanglements with racism, with ableism, with cronyism, with chauvinism. We need to see with fresh eyes and think with fresh minds. Look around you and see your culture. Recognize its influence on you. Use this information to imagine how you could be better.
And I want to acknowledge that among my friends and peers, I do know a few people who already do perceive different cultures, including their own, as simply different, and don’t traffic in assumptions about cultural defaults. I want to honor them as examples of how I want to think about and interact with others that may look different from me. I want to become one of those people.
I know that being better people is something everyone does want, no matter what their apparent category is. This moment is an opportunity to move past default-based ideas and accept new possibilities. I plan to take it.