Patients Aren’t Fakers: Doctor Bias is Killing Us

[medical trauma, stillbirth]

I’ve been banned on Twitter for standing up for patient rights, so I would appreciate anyone posting this on that platform.

The first time I recognized toxic medical culture was when I was pregnant with my first daughter. It was late 2002, and I was living with my husband in Portland, Oregon. I had a job as a paralegal, which came with really good health insurance. I know younger folks won’t believe this, but the amount I paid out of pocket for that medical insurance? $53 a month. My dental and vision was an additional $6.

I was excited to be pregnant and, like a lot of folks carrying a child for the first time, I was perhaps a little overly-fastidious about what I put into my body and how I took care of myself. It was the only time in my life I shopped at Whole Foods, for instance, paying more for organic kale shipped overnight from California than I could afford to spend on a week’s groceries now. I stayed entirely away from caffeine, which I likely couldn’t do now to save my life. I walked the three miles to work every day to keep in shape, but worried endlessly about whether I was inhaling too much exhaust because of it.

I didn’t smoke cigarettes, didn’t drink, didn’t do drugs. Not even weed. As some of you know, I spent some time in prison for heroin addiction in 1999-2000, but I’d managed to leave that life entirely behind after that.

However, this wasn’t enough for the midwifery team. Because of my past, they subjected me to random drug testing. It was, they said, for my own protection. It’s amazing what people with power over you will force you to do for your own protection, when they know you have no recourse. If I wouldn’t take the tests, they’d turn me into child protective services and I’d lose my baby before she was born.

It turned out my daughter had a heart defect that was incompatible with life. As I lay sobbing on the gurney, preparing to stillbirth my tiny baby, they had the fucking audacity to tell me my drug tests had come out clean.

“I fucking know,” I sobbed, and they had the further audacity to look shocked and offended.

As if it was about them, in that moment. As if their feelings were the ones that mattered in that situation, when I was in extreme physical and emotional pain, and they had the highly-paid job of caring for me.

This scenario repeats itself in medical facilities all over the world, and especially (it seems) in the United States, where toxic medical culture is the third leading cause of death. Doctor bias—especially against people of color, women, and people with disabilities—has been shown to cause tens of thousands of medical mistakes that lead to permanent injury or death.

Medical providers don’t pay attention to these studies, or the ones that show that trusting your patients and allowing them to be equal partners in their care leads to much better outcomes. Quite the contrary: nurses and doctors often openly opine that a large portion of their patients are fakers and drug seekers. Any perusal of Twitter or Reddit will show them mocking their patients, and if you’ve ever known medical professionals personally, you know that cruelly mocking the folks who come to them for help is one of their favorite pastimes. They have all sorts of opinion articles on medical sites about how we’re all a bunch of fakers, too.

They sometimes use the “opioid crisis” as a reason to torture their patients, but the opioid crisis isn’t driven by prescriptions, and they should know that. In fact, decreasing prescriptions has increased overdoses.

That a large portion of patients could be fakers isn’t rational, especially in the U.S. Who has twenty grand to waste on an ER visit just because we want attention? Who has seven hours to sit in the waiting room just for fun? Anyone can get narcotics for $10 on the street, in a lot less time. You can get a massage or a sex worker for an hour for $60-$400 depending on where you go, and that attention is a lot more positive.

Not only is the “patients are all fakers and drug seekers” narrative not backed up by logic—it’s not supported by evidence. In fact, as I’ve pointed out above, THE OPPOSITE is true—people are regularly dismissed as fakers, then die because of it or are permanently injured. Those are just the worst cases, too. Pretty much everyone who has been to the ER or the doctor has a story of how they were dismissed. Most of us are able to eventually get a correct diagnosis…if we have the privilege of being able to continue self-advocating. But not all of us can, especially if we’re part of a marginalized group.

So many have suffered, and will continue to suffer, until we defeat this toxic medical culture.

The reason I think it’s proliferated, especially in the U.S., is because you generally have to have a certain level of privilege in order to afford the schooling to become a nurse or doctor, so you already are in danger of having a superiority complex. Add that to the fact that insurance companies and medical costs have made it very difficult to get treatment. Medical providers have a de facto monopoly: if they fuck you over, you have nowhere else to go. If you do have the privilege of getting a second opinion, they accuse you of doctor shopping or collecting diagnoses.

The second time I encountered toxic medical culture was when I was in active labor with Kid. My water broke after many hours of contractions. I had to be taken by ambulance to the ER because the ice storm of the century had hit Portland, leaving six inches of ice on the roads and sealed our car doors shut.

The midwife on duty, regardless, wanted to send me home because I was only dilated 4 cm. She had to relent, however, because there was no way to get home. Instead, she told me to stop vocalizing (I had opted to go completely unmedicated, and I was howling. It really helped). The entirety of her “care” was to tell me I was exaggerating my pain. “This is your time to rest, between contractions. Stop wasting your energy being dramatic.” I didn’t have the breath to tell her that there was no time between contractions. They were one after the other.

She went off duty, and a new midwife came on. The last one had refused to check my dilation again. This one did. I was at 9 ½, and started to push immediately. (Hey, Millennials: you know how much I paid for the ambulance ride, birth, and recovery? $45. FORTY-FIVE FUCKING DOLLARS. This was in 2004.)

Luckily, I haven’t had to go to the ER since then, though I have had my back pain dismissed repeatedly by primary care to the point where I’ve quit going to the doctor for it, and just take kratom for it instead. However, my mom has been suffering for years because doctors have refused to investigate or treat her issues. Most recently, she had a seizure at home, and my dad had given her (inept) CPR on the 911 operator’s instructions, when she quit breathing.

The EMTs had to strap her to a gurney and give her Ativan to get her to the ER, because she had post-seizure psychosis and thought they were trying to hurt her. The ER staff had, instead of trying to figure out why she had a seizure, given her a drug test, which came up positive for the Ativan, so they figured she must just be in there for drugs. Why this would be their go-to assumption defies logic or evidence, but these are the people they are dismissing as drug seekers: incredibly sick 65-year-old women.

My mom told shift after shift of medical staff, repeatedly (since they all asked her about pain), that she had pain at a level of 7 in her back, but they never gave her so much as an ibuprofen for the 30 hours she was in the hospital, nor did they investigate the cause of the pain. It wasn’t until months later her primary care doctor (who she’d had to wait months to see) found out my dad had broken one of her vertebrae with the CPR.

They’re still not helping her with it.

And the neurologist she saw recently for follow up on the seizure? He said it was a panic attack and spent their hour consult berating her. She came home in tears and went off her meds. She is refusing further treatment for the seizure she had.

This is medical care in the U.S. This is what we pay a large portion of our incomes for.

I have more anecdotal evidence, but this doesn’t need to be an exhaustive account. Pretty much everyone who has ever had a medical issue has anecdotal evidence. And, again, large-scale studies back up that people in legitimate pain and with legitimate health issues are constantly dismissed and misdiagnosed.

Medical professionals: get your fucking shit together. You’re bad at your jobs. (Except those of you who recognize and fight against this toxic culture. Thank you. That can’t be easy.)

 

The Neurodivergent Experience: It’s Never About Us

[Content warning for just about everything you can think of. If you’re having a bad day and don’t wanna hear about the horrible things neurodivergent people have to put up with, have this picture of a puppy and go read a nicer article]

These are particularly bad times for neurodivergent/mentally ill folks. They’re trying to cut our benefits and health care. They’re constantly trying to make it easier to have us involuntarily committed and sterilized. Every day, it seems they come up with some new way to torture us in the name of a “cure”. The headlines are full of stories of police killing us for no reason, and we all know that those stories are just a few of the many abuses which occur on a daily basis to people like us. And yet, they continue to blame the neurodivergent for every highly-publicized violent crime that happens, as well as for the dangerous and destructive behavior of our (very mentally-healthy) president.  Yes: they hurt US, and then gaslight everyone and try to say it’s OUR fault.

But when we speak up, we get comments like this one here on my last post. People tell us we don’t know what we’re talking about. They think we’re unreliable narrators, and can’t be trusted to manage our own lives or even know what our own lives are about:

“Police are just doing their jobs when they illegally detain, harm, imprison, or kill you—they have no way to know that you’re not really dangerous.”

So, we have to prove to the police that we’re NOT dangerous in order to not get shot? We have to prove we’re NOT committing a crime in order to not get harassed or arrested? If we’re not holding a gun; if all we’re doing is yelling, or pacing, or crying, they have no reason to think we ARE dangerous, and we’re not committing a crime by showing emotion.

Like I said in my previous post, statistics show we’re no more violent than sane people are, and that we’re a good deal more likely to be hurt BY neurotypical folks than we are to hurt them. Especially when it comes to police: they’re more likely to hurt us than the other way around. So yes, it does follow that, when neurotypical folks lock up neurodivergent folks, the dangerous people are locking up the less dangerous people. In fact, we’re often hurt in the act of being locked up (usually for no reason).

It does follow.

“We all have problems; ableism isn’t real, people are jerks to everyone.”

Nope. You can’t be locked up for committing no crime. You can’t be forcibly sterilized. People don’t give you bleach enemas in an attempt to cure you of being neurotypical.

People are jerks, yes. But people are bigger jerks to neurodivergent people. Don’t think you understand what it’s like. You don’t.

“I heard a third-hand story of someone who was very nearly hurt by a schizophrenic person once, and therefore it’s completely right to lock up neurodivergent people.”

I hear this sort of story a lot. The only time it’s first-hand is when it’s being told by someone who worked as an ER medic or some such—someone else with a skewed sample size, because they only saw the folks who were in crisis, and were being forcibly detained and put in a position of high stress and danger (and therefore were actually defending themselves and not inciting violence. Don’t @ me telling me “the medics were trying to help them, they weren’t defending themselves.” If a group of people grabbed you and tried to tie you to a gurney, and you didn’t want them to do that, you’d fight back, too. We’re human beings, you know).

You’re forgetting a little thing called lived experience, which trumps your third-hand anecdote every time. Do you know what else trumps it? The statistics that show neurotypical people are more likely to injure us than the other way around.

Yes, there are neurodivergent people who are violent. That doesn’t mean you get to lock all of us up…just like the fact that neurotypical people are more likely to be violent toward me doesn’t mean I get to lock up all neurotypical people.  (That however would be a course of action supported by statistics.)

There’s so much else going on in that comment (and in others that I get every day). The takeaway is this: A neurodivergent person can’t speak out without someone telling us we don’t know what we’re talking about—that they, a neurotypical person, know better than we do. Literally, if we say we had eggs for breakfast, a neurotypical person will rappel from the ceiling and ask us if we’re sure we aren’t hallucinating or confused, if maybe we had oatmeal instead. Our voices, experiences, and opinions are constantly silenced and passed over in favor of “experts” or our family members. These folks can be some of the most abusive toward us, and yet the narrative is always centered around what can be done to help them: what makes our caregivers, family, and friends more comfortable. Usually, that’s finding easier ways to lock us up, sterilize us, render us unconscioius or inert, “cure” us, or find a way to detect our neruodivergence in utero so that we’re never born in the first place. Do any of those things sound like civil rights to you? Would you like any of those things done to you?

Just because we’re different, doesn’t mean we don’t want what anyone else wants: quality of life. We’re don’t exist in this world just to make you comfortable. No one does. If your neurotypical neighbor stays up all night singing loudly along with the radio, you don’t try to have him sterilized so he doesn’t have similarly-loud children, or make sure he’s medicated into a stupor. And yet, because we’re neurodivergent, you think you have the right to do that to us.

Even when talking about the realities of our everyday life, the way everyone does, we’re told we’re “oversharing”; that we’re making others uncomfortable; that we’re “whining” and “complaining” and that we should be more positive; that we’re triggering others with our stories.

It’s always about others’ feelings.

Is it any wonder we lose it sometimes? And yet we’re not afforded the luxury of venting our feelings and frustrations, again by the nature of being neurodivergent. Our emotions are too strong and messy for neurotypicals to deal with. When we display them, we’re ostracized and chided at best. We lose friends, we lose jobs, we lose everything that makes us happy. At worst, y’all beat us, lock us up, or kill us, just for speaking our minds. I have personal anecdotes, if you need them—read my blog, or my memoir, or ask me.

People don’t listen to us and constantly speak over us. Is it any wonder we feel isolated? Is it any wonder we commit suicide, because it seems like no one cares?

But, there are people who do care, who do understand. Never forget that.

All you glorious crazy people out there, I want you to know I’m listening. I’m here for your joy and your pain. You are important, and your feelings are valid.

Elizabeth Roderick is an author and freelance editor who is crazy as fuck and wants to tell you all about it. You can find her on Amazon.

LEFT-WING SURVIVALISTS: New Podcast Episode

Hi, y’all! I got another podcast episode done finally! In this one, I give a recipe for chestnut lembas, talk about my tiny house, and discuss my plans to have a commune where autistic, neurodivergent, and disabled folks (as well as others) can survive—and thrive—during Trumpocalypse. NOTE: brief discussion of suicidal ideation.

CLICK HERE TO LISTEN

Elizabeth Roderick is an author who lives in a shack and rants about communism. You can support her in these endeavors by buying her books on Amazon.

Review of TO SIRI WITH LOVE by Judith Newman

I’m an autistic author, and I urge you to read the critical reviews written by autistic people before you buy this book. Even if you do decide to buy it, it’s important that you know that autistic people have agency, feelings, intelligence and inner life…because Ms. Newman portrays us as thoughtless, helpless beings with no empathy.

I borrowed a copy of this book from a friend, so I could read it and opine on the controversy without financially supporting an author I’d heard was horrible to autistic people. However, Amazon is now not allowing reviews by people who don’t have a verified purchase through Amazon. I currently live on only a few hundred dollars per month (on most months), but I purchased a copy just so I could leave a review on Amazon. It is so important that autistic people endeavor to make themselves heard on the issues raised in this book.

Autistic voices are almost always overlooked, silenced, and dismissed. It’s a phenomenon embodied in this book, and in Amazon’s policing of its reviews in this case.

I first heard of this book when the author tangled with another autistic person—Amythest Shaber—on Twitter. Ms. Newman mentions Amythest in the book, in a really condescending light, and she further showed her contempt and disregard for autistic people in the way she spoke to Amythest online. I got a sick feeling. Autistic people are so often seen as not being worthy of consideration and respect, and I feared this book would be yet another example of that.

I wasn’t wrong.

To Siri With Love had a deep impact on me. I was able to identify, not with the supposedly heartwarming and hilarious struggles of a mother trying to come to terms with a son who doesn’t live up to her standards, but with the struggles of an autistic child who is ignored, harassed, abused, and condescended to by a mother who cannot see what a wonderful person he is.

Gus is now 16 years old, and his mother still hasn’t—will obviously never—come to terms with the fact he’s autistic. Instead, Ms. Newman seeks to make her son into something he’s not. No matter how hard she tries, however, she can’t force him to be normal. Oh, woe is her.

There are parts of this book that were almost heartwarming. The author, time and time again, seemed as if she were just about to realize the errors of her ways, and accept her son for the amazing individual that he is. Then she would ruin it by saying or doing something that made me want to curl up a cease to exist, because of how often I’ve had similar opinions and actions directed at me, and how badly they hurt.

It really sucks that a book that’s basically making fun of you—and everyone like you—for hundreds of pages can make it to a NYT Bestsellers’ List. And if I feel like that, I’d hate to know how Gus feels. Ms. Newman states she didn’t let Gus read the book, but I’m certain he understands her attitudes toward him more than she realizes.

I was born before autism was a diagnosis. I’m not certain when I first realized that I was different, though most of my childhood memories of interacting with others are marked by bullying, abuse and harassment. People constantly made fun of, tried to correct, or were angry at me for my behavior. Any change in my daily routine or plans would spark a meltdown—an uncontrollable episode of anger and fear—which earned me mockery and rage from my parents. My peers sneered at my suggestions we write a dictionary of a made-up language, or compile a catalogue the local plants. They ridiculed my age-inappropriate toys. They wanted to play boring games like house, or tag, but when I tried to join in, I’d get all the rules wrong, and end up rejected, curled in the grass in a fetal position, sobbing.

It was decades before I figured out what I was doing incorrectly: nothing. I was just being autistic, in an allistic (non-autistic) world.
Those who rejected me never learned that lesson. They still haven’t. Allistic people can’t see that there’s nothing wrong with being autistic, or with autistic behavior. I do understand that autistic people can be embarrassing or difficult to deal with, but 9 times out of 10, this would change if the allistic person would simply change their attitude and adherence to pointless ideals, and stop trying to get us to conform when our brains and bodies simply can’t.

To Siri With Love relates all these same experiences I had as a child, but not from the point of view of the child. Instead, it’s told from the standpoint of a mother who is fed up with her boring, weird, and difficult son.

Ms. Newman repeats over and over that she loves Gus. One gets the impression she’s trying to convince herself, or simply that she thinks stating it will make up for the fact that she doesn’t really love him that much (like those who prelude their racist statements and actions with “I’m not racist but…). Every time she states she loves her son, she follows it up with an anecdote that makes me want to weep, because of how clearly it demonstrates her contempt and dislike for Gus. Ms. Newman throws away her son’s toys—in which he obviously takes great comfort and joy—because she thinks a boy his age shouldn’t play with them anymore. She thinks the fact he enjoys Sesame Street is “alarming and frustrating”.
She steals and reads his phone when he’s texting with his friends because, in her words, “this is not a child who will ever have real friends,” and she’s just trying to protect him from people who are trying to use and hurt him (not seeing the irony, as she is the one who is hurting him, robbing him of real friends, while she makes fun of him behind his back or even to his face). Her idea of friendship, she says, is “people you go everywhere with”, “people who tease you” and “people you have healthy competitiveness with”. That makes sense, given the way she treats the son she supposedly loves: making fun of him and constantly comparing him to other mothers’ neurotypical sons.

She mocks and belittles Gus at every turn, even though she paints a picture of a son who is unerringly kind, genuinely likes people, is curious, and can discern when someone is being unkind…probably even when that person is his own mother. If I had to guess, I’d say it was Ms. Newman who lacks the social skills to tell when she is hurting her son.

Ms. Newman chuckles over her belief that Gus will never have a good career, or any sort of life at all, even though he already worked (as a child!) successfully as a doorman in their building—a job that was ultimately ended by ableism, not any fault of his own. Ms. Newman rolls her eyes repeatedly throughout the book and states outright that her son is “boring”, because he likes to talk about ambulances, escalators, and trains. I can understand that you might find a hour-long monologue about trains boring, Ms. Newman. Autistic people often feel the same way about small talk, or endless discussions of pop culture, sports, and the best recipes for vegetable chips (unless one of those is a special interest). Please accept that you are every bit as boring as we are, sometimes.

And then there’s the outright eugenicist bent of this book.

Ms. Newman hates her son’s autism so much that she’s stated she plans on getting medical power of attorney so that she can have him forcibly sterilized when he turns eighteen. Ms. Newman, here is the answer to the question you posed in the pages: you cannot even consider sterilizing your son without sounding like an eugenicist, without being one. Yes, many eugenicists are supposedly “well-meaning” people…just like you.
I want everyone reading this book to be very clear in their mind that this is what eugenics looks like. Ms. Newman and her supporters try to justify their eugenicist ideas by saying someone like Gus would never be a good father. This is demonstrably not true; please speak to the autistic community, and to ME personally. I’m a mother, and my former partner—a man so much like Gus I cried through parts of this book— was also a loving and amazing companion to my daughter. You and your supporters say, “wouldn’t sterilizing him be better than an unwanted pregnancy?” If so, all children should be sterilized, because allistic people have more unwanted pregnancies than autistics.

Eugenicists always have justifications for their behavior, and Ms. Newman is no different. Let’s call a duck a duck, please. There’s no excuse for eugenics.

In her mind, Ms. Newman is only trying to protect her son from hurt with her repressive, shaming, and controlling behavior. However, autistic people know from experience that parents like these can be the biggest source of hurt in a child’s life, and we know from experience that Ms. Newman is a horrible example of these. And example that, even more frighteningly, is being held up by mainstream society as a heartwarming and “refreshingly honest” paradigm.

As an autistic person, I’ve never understood why it is so important to allistic people that I act like them. If I want to play with my toys in public, or sing a song about my grocery list as I wheel my cart down the aisle, it is clearly not hurting them. In my mind, I’m expressing joy in being alive, or at the simple act of grocery shopping (as well as trying to remember my list, since I always forget something). However, I’ve been tailed by store personnel for this “suspicious” behavior.

I am a human being. I crave attention, love, and acceptance the same way anyone does. I have crushed so many of my loves, hopes, dreams and joys in an attempt to fit in.

After forty years, I can safely say it doesn’t work. I still don’t fit in.

So here is my advice to you, Ms. Newman: love the amazing son you have, not the allistic one you’ve spent 16 years mourning.

I’ll end this review with a couple quotes from the book:

>>Does he even understand that most people are not entranced by escalators? That he doesn’t see the world the way most others do? I’ve tried to approach the question a few times—“Do you know you are autistic?”—and he always acts like he doesn’t hear me. I want to understand what he’s thinking. Is he thinking? I keep trying.

Your son is thinking, Ms. Newman. He’s trying and trying to get through to you, to make you happy, to be good enough in your eyes. It’s tragic that he will obviously never succeed.

Do you know you are allistic, Ms. Newman? That not everyone is entranced by a tome vividly detailing emotional abuse? The autistic community is trying to tell you this, but you seem unwilling, or unable, to learn.

And another:
>>Through pain there is growth. I think about this all the time. Do I want my son to feel self-conscious and embarrassed? I do. Yes. Gus does not yet have self-awareness, and embarrassment is part of self-awareness. It is an acknowledgment that you live in a world where people may think differently than you do. Shame humbles and shame teaches.

Your son has self-awareness, Ms. Newman. I’m wondering if you do.

I don’t want you to feel self-conscious and embarrassed, because I don’t wish pain upon anyone. But I do want you to acknowledge that your son thinks differently than you…and that that’s okay. You don’t need to change that.

I want you to have the self-awareness to acknowledge that you are hurting your son—and all autists—deeply with your attitudes, and this book.
Just because you don’t understand autistics, doesn’t mean we don’t think. Just because we bore you, doesn’t mean we’re not intelligent or interesting. Just because you imagine a Benny Hill soundtrack to our lovemaking, doesn’t mean others won’t want to make love to us.
Just because you don’t see our value doesn’t mean we deserve to be sterilized, or worse.

You don’t need to shame and humble us out of our autism. Just let us be.

To the world, from all autistic people: please, for the love of God, just let us be.

 

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Elizabeth Roderick is an autistic author. You can find her on Amazon, and freely leave a review, whether you like her or not.

TO SIRI WITH LOVE: The Oppression of Neurodivergent and Marginalized Points of View

A book has just been published, entitled To Siri, With Love. The author is Judith Newman—a person we in the neurodivergent community call an “autism mommy”: that is, the non-autistic mother of an autistic child.

Ms. Newman is a great example of how neruodivergent points of view are commonly discounted, ignored, and subverted. Since neurodivergent people, by definition, think and see the world differently than the mainstream, we’re misunderstood. It’s like we’re speaking a different language, or like we come from a culture where all the gestures are different. Like, when I was in Nicaragua, and the “come hither” gesture looked to me like waving hello. Until I learned, every time someone told me to “come here”, I waved back…I wasn’t being nonsensical or thoughtless, I just had a different way of communicating.

This is how neurodivergent people feel, day in and day out. Since we don’t do or say the things people expect us to, they think we’re nonsensical, delusional, or thoughtless. This can lead our imprisonment, abuse, you name it. Because people don’t understand us, they think we’re dangerous, or unintelligent, or that our brains are “dead”. They think our lives aren’t worth living, and they treat us accordingly.

The author of To Siri, With Love is a perfect example of this mindset. Ms. Newman has stated that she doesn’t believe her son is capable of independent thought, or understanding others’ feelings. She publicly mocked his sexuality, telling the world what kind of porn he likes, and indicating she found the idea of him ever attempting sex to be silly and grotesque. This mother has stated outright, with impunity, that she doesn’t believe any girl[sic] will ever be interested in someone like him, and is planning to get a medical power of attorney so she can have him forcibly sterilized when he turns eighteen—because, in her words, “he can never be a real father.”

It probably comes as no surprise that the autism community is really scared, hurt and angry that this book has been published. It’s my understanding that the author has received death threats. I don’t agree with this, but that’s a view of how deeply the community is rattled. (If you want to see the quotes from the books and interviews, and community responses, check out the #BoycottToSiri hashtag on Twitter. Here is the thread of an activist who was included (and made fun of) in the book, without her permission, and here is my friend Kaelan Rhywol, live-tweeting her review of the book.

Full disclosure: I haven’t read this book yet. = I plan to, when I can get it at the library (I don’t want the author to have any of my money, or for her rankings to increase). [UPDATE: I’ve started reading it. Here’s my ongoing thread of tweets. I’ll be doing a full review when I’m done.] I feel the need to read it—even though chances are I’ll hate it—not only because her son sounds wonderful and I want to read about him, but because I want review the book, and I don’t review books I haven’t read. Rarely, I’ll review books I can’t finish, to be clear, but I never base a review on someone else’s opinion. They’ve already left that opinion, and if I can’t offer something new, there’s no point in saying anything.

However, in the case of this particular book, I wanted to review and speak out against its whole concept, and to things the author and her supporters have said and done, before I even deal with the particularities of the book. I think it’s important for me (and every other autistic person who can, and wants to) to make our voices heard on matters like these. Because allowing nothing about us without us is the only way neurodivergent people will ever gain their civil rights in this society. We need to show the world that we are thinking, feeling, intelligent individuals…because people literally think we aren’t, and that we shouldn’t have control over our own lives or narratives. Judith Newman is one of those people, and her viewpoint is popular enough that Harper Collins gave her a platform.

So, it’s time for me to dust of the old blogging fingers and write about one of my areas of expertise: points of view.

For those of you new to this blog, I’m a neurodivergent person. That means, my brain function is different than an average person’s. I am bipolar, autistic, and have PTSD. It’s caused me a lot of trouble and anguish in life, but it’s also pretty cool in other ways.

The first time I learned about point of view was when I had my first psychotic break, when I was about 14. I was wandering down the street screaming that I’d been poisoned and that I needed help. I wandered into a stranger’s house. They called the police.

Technically, I was breaking and entering (I didn’t actually break anything, I don’t believe, but still). Luckily, I wasn’t charged with it, because of the kindness of the police officer. But, from their point of view, I was a dangerous person.

I wasn’t dangerous. I was scared, and very upset.

Whose point of view was correct?

I can’t blame those people for being scared. They had no idea what was going on. However, if they’d been more knowledgeable about neurodivergence, they might not have been scared. They might have been able to offer me kindness and compassion, get me calmed down, and get me the help I needed. It would have been a less horrifying experience for all of us.

I still experience these divergence of points of view almost every day, even when I’m not in a psychotic break. For instance, I’ve been having a lot of problems with people shooting their guns on and near our property—hunting coyotes for the most part. This is a pretty heavily-populated area, all private property and it’s not legal to hunt here. The hunters’ bullets go astray, hit our outbuildings, scare the fuck out of my dog, my kid, and me. I went to my local Facebook group and posted a story of a woman in Wisconsin or somewhere who had been killed by just such an illegal hunter, and asked that people be more responsible with their guns.

Of course, cue a bunch of hunters to get pissed and tell me not to knock hunting.

When they said that, I freaked. The fuck. Out. They were basically saying it was okay to shoot at my house. I tried to reiterate the fact that it was illegal and wrong to hunt on my private property, or on other private property marked “NO HUNTING”, and have their bullets go astray and endanger my family and animals, but mostly I just called people idiots and pieces of shit.

I felt very threatened, is why.

I got banned, of course.

When I calmed down, I was able to see their point of view. They for the most part weren’t being directly threatening, they’d just—for no particular reason—thought I was bashing ALL hunters. And I had—wrongly, except for in the case of one commenter—felt like they were personally threatening me. Since I’m neurodivergent, (I have PTSD, and have had guns pulled on me, have been personally threatened with them), the way I felt and expressed my fear and anger was socially unacceptable. I’m working on it, but it’s difficult to control my reactions sometimes.

But, even if how I expressed myself was “wrong”, my fear and anger were understandable, right? All I wanted was for people not to shoot at my house, and for this, people called me “ignorant”. They said “People probably just don’t like you, libtard. That’s why they’re shooting at your house.”

Understandable or not, since I’m the neurodivergent one, I was immediately seen as the one being threatening. I was in the wrong, by mainstream standards.

The difference is, afterward, I can see where I went wrong. Those neurotypical people, in my experience, never will. I’m forced to live in their idea of mainstream reality, so I’m forced to constantly second-guess my point of view. They’re never forced to.

That’s neurotypical privilege: the privilege of living in mainstream reality, so to speak, and the ability to communicate one’s thoughts and feelings in mainstream ways.

The privilege of being, and feeling, “right”.

I see this type of divergence of point of view play out every day, in all aspects of life. Two completely different viewpoints, and each is completely unable to see the other’s. This happens between neurotypical folks, too, but it’s particularly bad for neurodivergent people, because—by nature—we think differently, and neurotypical people think our brains are wrong and defective.

Can you imagine what it would be like if people thought your brain was wrong and defective? If they immediately dismissed everything you said, always misinterpreted you, and misunderstood you to the point of becoming angry or even violent, when you had no idea what you were doing wrong? Can you imagine if your own mother was like that?

This is how Judith Newman treats her son Gus. It’s the treatment she describes in the book.

I believe it, because this is what it is like for neurodivergent people, every day.

That guy ranting on the street corner (or the girl wandering down the street, screaming about spirits and poison, or the woman freaking out and calling you an idiot on Facebook)—in our own mind, we make sense, just as much as you make sense to yourself. If you got to know us fully, we’d make sense even to you.

We are sentient beings, and have fully-formed minds, just like you.

But hardly anyone wants to get to know “people like that”—people like me, or like Gus—because they think we’re dangerous, or at the very least, pathetic and annoying.

The woman who wrote To Siri, With Love, states throughout the book how annoying and nonsensical her son is—she’s being lauded by neurotypical culture for her “honesty”.

The autistic community, however, isn’t. We’re crying out to her that her son isn’t thoughtless or unlovable; that we’re like him; that often our mothers also thought we were incapable of love or thought, but here we are: thinking, functioning, feeling human beings, some of us with careers and families, all of us with loves and interests and inner lives.

But the author and her supporters are incapable of seeing that point of view. The author sees the outcry in the autistic community as bullying. She can only see her own hurt feelings, and can’t see that she has hurt the feelings of thousands of others…including her own son (whom she states in the book did not give his permission to be used in this way, or have his private life mocked and outed. The mother states that she didn’t think he was capable of consent).

Everyone who is reading this: I hope you will recognize that her point of view is wrong, even though it is currently the mainstream one.

It is time to change your way of thinking about neurodivergent people. It is time for our point of view to come into its own.

Elizabeth Roderick is an author and freelance editor. She thinks trains are pretty cool, and wouldn’t mind if one played percussion in her band. You can find her on Amazon, and on TalesFromPurgatory.com

Disability: Crutch, Scapegoat, and Shield

CW: Ableism, racism, Nazis, and centering of disabled voices.

 

Notice I gave a content warning for centering of disabled voices. I’m not doing this to be cheeky. Abled people think they not only have the right, but the obligation to center themselves in the disabled narrative. After all, disabled people are weak, feeble, befuddled and delusional; the disabled narrative is obviously too heavy for us to carry, too complex for us to understand. We’re no doubt extremely grateful that abled people can take over that burden for us.

After all, abled people are the experts in our narrative: they have a degree, or a disabled family member, or they’ve so angelically dedicated their lives to “helping us.”

When disabled people try to stand up and say, “Well, actually, you’ve got it wrong,” abled people get absolutely irate. They call us names, shout us down, then block us on Twitter and go around subtweeting about what problematic assholes we are for not getting the disabled narrative “right”.

Part of the problem here is that the disability narrative doesn’t get much press. Disabled people are trying really hard to get our seat at the table, but the table isn’t accessible. So those “experts” have so kindly decided they’ll be martyrs for our cause and sit in for us.

Consequently, even those who consider themselves on the forefront of the social justice movement don’t know what “neurodiversity” or “ableism” or “neurotypical privilege” are; they still insist on person-first language, and use phrases like “wheelchair-bound”, because they’re listening to the “experts” and not to disabled people themselves.

Another problem is the complexity of the disability narrative itself. “Disabled” is a wide swath of identity including both physical and mental disabilities. Most of us who consider ourselves disabled become a little lax in educating ourselves about disability. We think we know it all already, so when another disabled person says something we don’t understand, we tend to lash out.

Disabled people of all kinds are tired of this shit. I, personally, am completely done with it. So, I’ve given you your content warning. If you can’t handle disabled voices being centered without flipping out and being ableist, please go elsewhere on the internet where we can’t distress one another.

Thank you. Moving on.

Disabled people are the receptacle for a huge amount of bullshit. Abled people use us as crutches, scapegoats, and shields.

I’m not just talking about abled people on the right. The left is just as guilty.

Let’s start with how disabled people are used as crutches. The irony of this metaphor—an abled person using a disabled person as a crutch—is intentional. Yes, it’s is exactly that painful, awkward, and incapacitating…for us, the “crutches”.

So. If we’re thoughtful people, we know white people are to blame for electing Trump (and other leaders of his ilk around the white world). What most of us don’t realize is that we white folk used disabled people as a crutch to help get him elected.

Most disabled people wouldn’t vote for someone like Trump. After all, we know the violence behind the “personal responsibility” narrative. People have been trying to get us to pull ourselves up by our own bootstraps since the dawn of time, and all that’s happened is we’ve ended up on our asses in the dirt, with abled people shaking their heads and blaming us for not trying hard enough.

Disabled people know what will happen to us if Medicaid and other safety net programs get cut. A lot of us remember what it was like before those programs even existed in their current forms. And we know that, even if we can access those programs now, they provide the absolute minimum in benefit to us, leaving us in a position of perpetual instability.

Trump’s presidency is a literal death sentence for us. But our identity has been hijacked and used against us to elect him and prop him up.

Abled people see disabled people as burdens and fakers; victims and villains. Which part of this spectrum a specific disabled person will fall on depends a lot on factors like their race and how they’re disabled. For the most part, disabled people of color are more likely to be seen as villains: as dangerously crazy, or “fakers” who are working the system, while white people are infantilized and seen as helpless victims. But it is by no means that simple. All of us tend to be seen and portrayed as ALL of these things, even by a single individual, and all in the space of one sentence.

For instance, we’re spoken of as creatures created by cycles of poverty and abuse, brainwashed by victims’ complexes, who only need a chance to do “useful” and “productive” work so that we can get our “dignity” back. We’re not only brainless, childlike victims, but also conniving villains who are working the system, and only abled people can save us.

Trump claimed he was the only one who could create opportunities to get disabled people back to work. He’d bring back the jobs. He’d purge the “welfare” roles of all the lazy fakers who were draining the system. He’d put a new system in place and make us all reapply for aid, so those fabled disabled people who are really in need could get even better support. Plus, the military veterans who weren’t “strong enough to handle” the atrocities of war would have a new and improved V.A.

All of this rhetoric gets disabled people both going and coming. Not only are we fakers, but we’re weak. We’re not only burdens, but we have to bend over backward to prove to abled people that we’re worthy of being burdens, if we wish to get what we need to survive.

And this narrative helped elect Trump. Abled people thought they were helping us by buying into this bullshit narrative.

Abled people on the left also want to use us as a crutch to counter Trump’s agenda of dismantling Medicaid and Medicare and the safety net. I’m much more willing to be used as this type of crutch, but I really wish they’d give actual disabled people a seat at the table, instead of letting experts speak for us, and letting unethical reporters write both inspiration porn about disabled people “overcoming in spite of”, and sepia-toned tragedy pieces about how we get ourselves stuck in a cycle of welfare culture because of our infantile inability to see our way into a better—abled—way of life.

Now, let’s look at how disabled people are used as a scapegoat.

We’ve all noticed how, when someone commits an act of violence, they’re called a terrorist if they’re a person of color, or mentally ill if they’re white. All rational people know how this hurts people of color. Fewer people see how this hurts the neurodiverse.

Being neurodiverse or mentally ill has absolutely nothing to do with being violent. Say this again, because I’m almost positive you still don’t understand: violence and mental illness are completely unrelated things.

Committing an act of violence doesn’t mean you’re mentally ill.

Being mentally ill doesn’t mean you’ll commit an act of violence.

People who commit acts of violence are not statistically more likely to have a diagnosed mental illness. Mentally ill people are MORE likely to be hurt BY neurotypical people than the other way around.

Neurotypical people are the violent ones. Not us. Some of you reading this won’t believe me. Google is your friend. Do some research about the percentage of violent and other crimes perpetrated upon neurodiverse people as opposed to by them (and/or read some of the blog pieces I’ve wrote on this in the past), because I speak the truth.

So, calling white terrorists mentally ill is a cop out: it’s white people saying, “NOT ALL WHITE PEOPLE!” It’s white people thinking that people who commit those acts are somehow different from them. We white people can compartmentalize and “other” that hate and racism as “crazy”, so we don’t have to think about what ideas we ourselves might have that support and feed into the toxic mindset of a violent racist.

People on the left also call Trump “mentally ill”. He’s not. He’s just a dangerous asshole, and this isn’t the same thing at all. “I’m not trying to insult neurodiverse people,” is the answer I get when I speak up about this. “I’m just saying there’s legitimately something wrong with the dude.”

No arguments here about that. There is legitimately something wrong with him. But that “something wrong” isn’t “mental illness” because despite what people think, neurodiversity isn’t “something wrong” to begin with. At all. Just please, stop. Neurodiverse people are not the trash barrel where you can throw all your goddamn issues. Instead, try dealing with them and admitting that “sane” people do very, very horrible and irrational things.

Disabled people are also used as a shield, which is sort of a hybrid of a crutch and a scapegoat.

I saw this a lot yesterday, during that Nazi march. White people said a lot of things like, “I understand that what they’re doing is wrong. But think of things from their perspective. Maybe they’ve suffered abuse. Maybe they’re mentally ill. Maybe they’ve had to struggle to pay the bills because their parents are disabled.” Etc.

Disability and mental illness are not shields that you can put up so that accusations of racism/bigotry will bounce off. It pisses me off that abled people try to blame neurodiverse people for being the perpetrators of all violence and racism, and then they also think they can shield white people from accusations of racism because of their supposed mental illness and disability. Abled people are exhausting.

Mental illness and racism have nothing to do with one another in the same way that mental illness and violence have nothing to do with one another. Mental illness and/or trauma will not lead someone to be a bigot. Those sick and dysfunctional ways of thinking are not neurodiversity. They’re just bigotry.

How abled people can be so fucking ableist and then accuse disabled people of being the root of all evil is just fucking aggravating.

I’m done with it. Please stop. For the love of GOD.

Elizabeth Roderick is an author and neurodiverse activist. She’s busy writing books, which abled people think is inspiring while simultaneously thinking that she’s a burden on society and should get a real job in order to get her dignity back. If you want to support her in her undignified and childish inspirational pseudo-work, you can find her on Amazon.