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.)

 

Where Feminism Failed Me

[rape, assault, abuse, gender dysphoria]

I’ve been tossing around the idea lately that I’m not actually a woman.

It’s not just “lately”, to be honest, but this latest bout of introspection on the matter has been rather more decisive.

Today, my gender crisis was triggered by a tweet asking women what they’d do if men all disappeared for a day.

Cue the regular answers of “spin around gleefully in a field of wildflowers while not getting raped” and such. I’m not going to say I don’t understand those answers. I do, sort of. I’m a survivor of multiple bouts of domestic abuse, domestic rape, many counts of sexual assault, and constant sexual harassment. I mean, I am a woman. Or, at least, I look like one, if not a very good one, according to social norms.

However, I just can’t buy into it. Not really.

I’ve always hated feminism—or, at least the brand of it that I recently discovered is called “white feminism”. Anyone who doesn’t know the distinction should really look it up. It explains so much.

White feminism is the “rah rah Sisterhood” brand of feminism. The type that separates the world into men and their victims. Yes, that is glossing over a lot of complex and valid theory, I know.

But that’s my reaction to white feminism. I hate it in the way I hate things that trigger me emotionally: that is, I hate it on a non-rational level. I have a knee-jerk reaction to it that comes before thought.

I have always been rejected by femininity and have never identified very strongly with it. I’m not sure which of those things came first. Since I was little, girls have always told me I’m not really a girl, that I don’t act like a girl, and have made that clear in every way possible: I’m not one of them.

White feminism would have me believe either that this isn’t true—that my internalized misogyny is the reason women have rejected me—or that these females only rejected me because they’ve been brainwashed by the patriarchy into believing a narrow and subservient view of femininity.

That, however, is cop-out bullshit. It’s women turning around and blaming their own victims.

Now, don’t get me wrong. The patriarchy exists, and misogyny does exist. Better folks than I have written about it. But it’s indisputable that women get paid less and are at a disadvantage in the general power dynamic. Men perpetuate almost all rape, the majority of violence, and are able to keep women systematically subservient.

But what we need to not ignore is how women are complicit in this. We need to not ignore the ways that we benefit from traditional femininity and use it to oppress other women. And we need to not ignore the ways we perpetuate other systems of oppression that intersect—or don’t—with misogyny.

I’ve been abused in a lot of different ways in my 41 years. Every single one of those times, there were women who could have stopped it, and didn’t. There were women who blamed me, who gaslighted me, who ignored my cries for help. Not because they didn’t have the power to help, but because it would have destroyed their comfort. It would have disrupted their place in the system of supremacy—a place where they’re given preferential treatment by nature of their traditional (read mostly white, cis, heterosexual, abled, neurotypical) femininity.

Women don’t get a pass from me for that by nature of their gender. They’re not just victims of their circumstances.

The only way we’re going to stop these systems of abuse and oppression is by acknowledging the ways in which we benefit and are complicit. It’s a complex and painful process to acknowledge that. I know we’d all like to think that it would suddenly get a lot easier if men just disappeared. But I think you’d find that the majority of those systems would still persist in the absence of masculinity. Because it’s WAY more complicated than men, and their victims.

We need to look at the ways in which WE perpetuate oppression if we want to have any hand in dismantling it.

Personally, I do.

I’ll be damned if my daughter will go through the shit I did, and if I’ll allow that to happen simply because I myself have been a victim or beneficiary of the same systems.

What Happened with WriteMentor

I’ve gone back and forth, back and forth, about whether I need to write this blog post. When people are smearing you all over the writing community, it’s hard to just sit back and take it. But I’m exhausted, and scared. I can’t take any more abuse and bullying. I just want it to go away.

However, I’m not the only person who has been a victim of the particular group that’s smearing me and ruining my life and career. Anyone familiar with YA Book Twitter knows which group I’m talking about. It’s headed by a few very popular authors who have a lot of connections and power in the industry. These people do a lot of great things, have a lot of great ideas. But they also have a lot of problems.

These authors have a big following, and those followers apparently think they can do no wrong. Everything these authors say, their followers back them up. Whenever they call people out (which is a lot), those folks get drowned in a sea of vicious ally tweets. But every time these authors display problematic behavior of their own, their fans accept their excuses, believe their gaslighting, and attack the people who are calling them out.

Now, a lot of people are afraid to speak up and express their opinions about anything, for fear their opinion will be deemed “wrong” and they’ll be subjected to painful dragging.

People in the back threads of YA twitter whisper about it a lot, but what can you do? These are the folks who can—and do—destroy the careers and reputations of writers, bloggers, and readers over issues which often seem really minor and subjective to anyone not caught in the echo chamber of YA Book Twitter.

A lot of people have suffered because of this group. I’m one of them. At this point I have nothing else to lose, it seems like, so I feel like I should step up and talk openly about all this, for the benefit of those who still do have something to lose…and in the faint hope that perhaps YA Twitter can make some steps toward healing and acceptance.

I don’t know if I’m doing the right thing. But I just need shit to change in YA Twitter. A lot of us do. So I’m gonna have this convo, for better or worse, in hopes that folks actually listen for once.

So.

A little over a year ago, on the date THUG released, I wrote a blog post.

I’ll backtrack a bit. For those who don’t know, I’m an Own Voices writer. I’m neurodivergent and queer.

Being an own voices author is really difficult. In my case, it involves disclosing a whole bunch of things about myself that don’t exactly look good on a resume and cause a good deal of prejudice to come my way. But I decided at a turning point in my life that I’m going to be honest about my neurodivergence and embrace it, because people like me have nothing to be ashamed of.

My first book I pitched with a neurodivergent main character is The Other Place. It’s written in first person, present tense, with a very different sort of voice because the main character is schizophrenic.

I got all sorts of really exhausting rejections on that one. “Great writing, I just can’t identify with the character.” “I really wish this book were more about overcoming schizophrenia.” “Our reader recommended we take this on, but we already have a book about schizophrenia on our list.” There were other rejections, too, but they basically boiled down to “This is just too neurodivergent.”

I did get The Other Place published, though! Hooray. Then I moved on to pitching a YA with another psychotic main character and started getting a lot of the same kind of rejections.

So, anyway, THUG came out. I was excited for it, because it looked like something I could identify with, even from my white point of view. My partner was almost killed by police when he was having a nonviolent, unarmed psychotic episode, and everyone tried to blame him for it. I was so glad to have a book that talked about the problem of police violence coming out.

However, I hated how the publishing industry was patting itself on the back for publishing that book. Why wouldn’t they publish it? It’s just a great book. They didn’t deserve any of the kudos. Those go all to Angie Thomas.

Going back to the blog post.

At the time, I had literally about ten blog readers, all of them neurodivergent people like me and all of whom I knew pretty well. So, I felt comfortable in my audience and didn’t over-think the post too much. I told about my experiences, went on about how happy I was THUG was being published, but indicating that the publishing industry has a long way to go. I said I felt like they were using own voices writers as trophies, holding us up saying, “Look what we did!” Then, they’d go back and reject a bunch of other own voices writers because they already had their trophy, thanks.

I know now that including THUG in that post was hugely wrong. Yes, I know the book is important on its own merits, and I thought I’d made that clear in the post. But, you know, when writing from my own point of view, for my own friends—especially because I’m autistic and have very different social consciousness than most people—I don’t always correctly anticipate how stuff looks to others, and how it can hurt them.

The first comments I got were from my friends, that they liked the post, but it was fairly quickly that someone who wasn’t my friend pointed out that I’d done it wrong.

However, the way they pointed it out? They told me that I was “trashing” THUG and “griping” about the industry.

Hold up, I said. I’m not trashing the book. And I’m a marginalized woman talking about my experience as an own voices author. That isn’t griping.

People started calling me all sorts of saneist and ableist slurs and saying stuff that triggered my PTSD. But I did finally (after about 15 minutes) get it through my thick skull that, oh, wait, I can see through all their ugly ableism what they mean. I apologized and changed the post.

But this is YA Twitter. That wasn’t enough for them. I was dragged by literally thousands of people who said that I didn’t have a right to speak up as an Own Voices writer, that I can’t write, that my opinion doesn’t matter, that I need to shut up, blah blah blah. And when I pointed out that, hey, I’m trying to listen here, but you’re being awfully ableist with some of this shit, they said I was using my neurodivergence as a “shield” or “weapon”.

Now, I can understand how neurodivergence could seem like a shield or weapon to folks who only pick up the identity when they’re trashing other disabled people. But for me it is something that is with me always. It affects every word I say, everything I do, every thought I have. It can’t put it down, even when I’m in a good mood. Even when I’m alone. It is who I am. It causes me a lot of problems: I misunderstand what people say. I say the “wrong” things. I freak out. I withdraw. Sometimes I believe everyone is a spirit sent to give me clues that will lead me to the afterlife. But there are a lot of cool things about me, too.

So, here I was, a neurodivergent human being, trying to cope with millions of tons of abuse. I almost ended up in the hospital. I was eventually diagnosed with an exacerbation of my PTSD because of this incident.

I shouldn’t have included THUG, it’s true. But I apologized and changed the post, and the underlying point I was trying to get across is still relevant: publishing has a long way to go before it’s really unbiased. I don’t think what I did deserved what I got.

After that incident, I was put on a block list. I had agents who had my full ghost me. And I kept getting abuse.

More than a year later, I’m still getting abuse. And it is abuse. When there’s nothing you can do to stop it—no amount of apologizing, introspection, and learning about oneself that you can do to satisfy people—then it is just straight-up abuse. And these people are intent of driving me out of the industry. I guess they think that kicking a marginalized woman out of publishing is a big win for diverse books.

Recently, I volunteered to be a mentor on WriteMentor. I was really excited to help another neurodivergent author get into the industry. But soon after the sub window opened, the organizer, Stuart White, approached me. A friend had told him if he didn’t kick me out as a mentor, then this group that had abused and bullied me before would tweet that the contest was problematic. They told him that POC wouldn’t enter the contest because I was a mentor.

So, he dumped me. “It’s just business.”

It doesn’t matter that entrants get to choose which mentors they submit to, so prospective mentees wouldn’t have to deal with me in any way if they didn’t like me. It doesn’t matter that several neurodivergent and disabled folks said they felt more comfortable entering the contest because I was involved. It doesn’t even matter that I’m not out here being problematic – at least no more so than any of us. I wrote one blog post that some people took issue with, which I edited and apologized for within minutes of being called out, and otherwise I’m just a neurodivergent activist out here doing my thing to make the world better.

None of that matters. Ask yourself why none of that matters, and why it’s so important to kick a neurodivergent activist out of publishing because of what I did.

I’m not the only marginalized person these folks have bullied. In fact, they do it so much that they’ve been written up several times in mags with huge circulation. They especially enjoy trashing on disabled and neurodivergent women, it seems like. When they’re called out on it, they make a million excuses, and blame their victims…which is what they accuse their victims of doing. But with them, it works, because they’re popular. They’re the cool kids.

It sucks.

I feel like I’m back in middle school, trapped in an environment that is completely controlled by these cool mean girls, and I have to remind myself every moment that they’re not the whole world.  It doesn’t matter what I do – they’ll twist it to make it look like I was trying to do something else. They’ll point out every mistake, every failing. They’ll call me “stupid” and “gross” and “trash” and “useless”. Anyone who thinks of being my friend, they’ll tell them, “You don’t want to hang out with her. Did you hear what she did?” Even if my friend is not persuaded by those arguments (and cool girls are persuasive – that’s part of what being cool is), they’re left with a choice: stick by me, and be ostracized with me, suffer the same abuse that I do. Or ditch me and save themselves the trauma.

I don’t blame people for picking the latter. I really don’t. But it’s something we need to stop doing if we’re going to evolve as a community, as a species.

I always say that intent does matter. If a person (especially someone neurodivergent with communication issues) says something and you misinterpret it, why would you claim injury when they try to explain what they really meant? Doing so is weaponizing your neurotypical privilege – the privilege of understanding language in the way the majority does. The privilege of communicating easily with others.

But, I have to say: intent doesn’t matter when you uphold discriminatory systems, like Stuart White did. He may have gained ally points for caving into pressure, but in the meantime, he caused real and measurable harm to a marginalized woman, and to the community as a whole. One fewer neurodivergent writer will get a mentor, thanks to Stuart White.

If you don’t see that as a problem, then just admit you don’t care about neurodivergent people and go home.

“But you deserve this harassment because you’re racist!”

Ok. Sure. Except I’m not out here being any more racist than anyone. I work on my mistakes and biases. The group that called me out, doesn’t. They’ve showed their asses so many times: putting ableist slurs in their books without apologizing, piling on disabled women for just existing, saying extremely heterosexist things, refusing to take down memes that are insulting to First Nations people. They never apologize, and they always do it again. But somehow those of us who make one wrong move that we immediately apologize and feel awful for deserve to be ostracized for the rest of our lives.

When popular people make mistakes, folks gloss it over. They make excuses. They forgive and forget. But the rest of us aren’t so lucky. One mistake or oversight can cost us our whole career – or worse. If we cross the wrong person— who is powerful, and toxic, and will not let it go – they will destroy us.

I know that these folks have endured bigotry and trauma in their pasts, and that’s where some of this venom comes from. Trauma in our past can make us see threats where there are none. It can make us read ill intent into people’s words and actions that isn’t there. I know, because I go through this, too. But part of healing is learning to work through that trauma and not have it affect your relationships. I try really hard to not make others pay for my PTSD-driven interpretations of their words and actions. If I freak out because they’ve said something that hurts or offends me, I take their word for it when they say they didn’t mean it that way. Their intent does matter – way more than my PTSD reaction does. My feelings are still valid, but I don’t have the right to make others pay for that. Making others pay is where toxicity starts.

Having your feelings hurt is harmful – but if the person who hurt them didn’t mean to, is that true harm? And do you have the right to intentionally harm them in return?

Just because a person is marginalized doesn’t mean they aren’t bigoted. We’re all bigoted. We all need to work on it. And we all need space to improve and do better. If we can’t offer that as a community, then soon there will be no space for any of us.

Just because someone is right sometimes— does great things and has great insights sometimes —doesn’t mean their ideology is perfect. None of us are right all the time.

These are complex issues, and we need to allow room for the discussions of the complexity without shutting each other down and only letting the blue check marks speak.

I really want to just give up. But writing is all I know how to do. It’s a coping skill for me, which has got me through some really tough times: abuse. Homelessness. Prison. Addiction. And worse. I can’t give it up. But I’m gonna be switching up how I go about my career.

As Kid says, I’ve been through worse, and I’ll make it through this, and I sure hope she’s right.

All the other ones who have been hurt by this group, or any other bullies: you’re not alone.

When a rigged system silences voices

I agree. I know Amazon has the “right” to do this, but their market share is such that it amounts to oppression.

the silent wave

Visiting the lovely peeps on my blogroll today, I came across a particular post that spawned a tangential thought-stream.  What follows is indeed my own thought stream, concerning a topic about which I know little, because I haven’t had the energy to go full-on activist in recent months.  But I’ll share with you those thoughts that did come.

I originally decided that I wasn’t going to name names, but I ultimately decided that I would.

A little background: The post that seeded these thoughts was an ActuallyAutistic review (excellent read!) of the infamous book “To Siri With Love” (by Judith Newman), written by Elizabeth Roderick (whose blog is certainly worth a follow!).

And, in my own Aspergian/autistic systemizing fashion, I got to thinking about Elizabeth’s words and how aspects of The System are…well, systematically dampening my own Aspergian/autistic spirits by repeating the anti-AS drivel that seems to spout from so…

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Left Wing Survivalists Episode 2: Apple Butter & Suicide

For #worldmentalhealthday I thought I’d do a podcast. This has advice on how to dry plums, make apple butter, glean fruit & vegetables…and also a discussion of suicide. *shrugs* Here you go.

Left Wing Survivalists: Is War or Revolution Coming?

That’s the big question for a lot of us, though most people roll their eyes when we bring it up.

Our so-called presideLeft-wingsurvivalistsnt is starting bitch fights on Twitter with a nuclear power. Nazis are marching in the streets. They’re making a show about the young Sheldon Cooper. If these aren’t harbingers of the apocalypse, then I don’t know what.

So, I’m starting a podcast. This is my contribution. Here’s episode one.

Yeah, but what do you expect me to do? Save the world?

I’m a survivalist. I build my own shelter, grow my own food, and write my own novels about intersex aliens. I’ve got it all figured out. Now, you can learn from the expert.

Basically, I’ll be talking about tiny house homesteading, writing, neurodiversity, and politics.IMG_2873

This podcast is of very poor audio quality. I know this. I KNOW, OKAY? I’m learning. I’m lucky if I do one thing right every day.

Pictures of my house are forthcoming.

THE OPPRESSION OLYMPICS: THEY ARE REAL, AND THEY ARE (really goddamn) OPPRESSIVE

It’s time to write another of these posts wherein I open myself up for harassment and harm. It’s important for me to speak up, though, because I’m seeing lots of people (especially marginalized people) getting hurt. If you’re one of those people and you’re too afraid to speak up for fear of getting hurt even worse, please know that you are welcome to DM me.

My mother was a Montessori teacher for 32 years. As you can imagine, she has a valuable stockpile of anecdotes about what kids do and say. For instance, one time a little girl came running up and threw herself into my mom’s arms. “Josiah told me he hates me and never wants to play with me again!”

My mom, who had witnessed the whole interaction, patted the little girl’s back. “He didn’t say that, Queidlynne. He said he’s working on a project right now.”

Queidlynne stomped, wiping her snotty nose on my mom’s shoulder. “In my head he did!”

This has become a catchphrase in my family. Every time one of us wrongly interprets someone’s intent and accuses them of things they didn’t do, we catch ourselves and laugh. “In my head you did!”

If Queidlynne (thankfully, not her real name) had asked Josiah if he really did hate her and didn’t want to play, he probably would have said, “No, I don’t hate you. I’ll play with you when I’m done with this project.” He also might have said something snotty, or ignored her, but at that point she at least would have been sure of his intent, and have had a real reason to be upset. As it was, though, she didn’t have good reason. Queidlynne’s feelings were real, and my mom did the right thing by listening to her, comforting her, and talking to her about it. However, those feelings had no basis in reality.

Even if Quidlynne had experienced rejection from other little boys, it wouldn’t mean that Josiah was rejecting her this time. Just like other people can have hidden bias against you, you can paint them with the colors of your past experience and assume they are just as bad as all the others.

I’m seeing this sort of situation play out so often lately- but with adults, in the sphere of progressive activism. Neurodivergent people are ESPECIALLY likely to be hurt in this sort of scenario: not only are our actions/words/reactions notoriously wrongly-interpreted through a neurotypical lens, but we’re more likely to misinterpret others. We need to be accountable for that, and make sure to step back and listen. And NT people: when we tell you what we meant by something, don’t tell us we’re wrong. You can tell us we hurt you, but we don’t think the way you think or see society through your lens. Stop trying to force us into that mold, and we’ll all communicate a lot better.

There’s a lot of emotion flying around, and a lot of collateral damage from it. People-good people, and quite often marginalized people-are getting hurt, because someone misinterprets something they say and then doesn’t care to listen to the explanation. An offhand and perhaps ill-worded comment, or unpopular but harmless opinion (also common amongst ND people, because, again- our thinking is DIVERGENT from social norms, which doesn’t mean WRONG) can  cause an explosion of anger and bile that blows a permanent rift in the community.

I’m also seeing a lot of folks excluded from marginalized communities, or from the marginalized umbrella, for not being “marginalized enough” in the first place. Y’all…just…jeez, ok?

Communities of marginalized people have existed, I’m sure, since the beginning of humankind. People who, for one reason or another, are outcast from mainstream society gather together for comfort and protection. Marginalized folks often rely heavily on these groups for companionship, support, and validation. They are a lifeline to us.

However, there’s an alarming trend of people in marginalized groups trying to exclude people and police membership requirements. Since the whole purpose of these groups was to give marginalized people a place where they belonged, it’s devastating when that group turns around and tells them they don’t belong there, either.

It’s true that people can be mega fucked up, and there are those who will lie about their identity in order to troll and prey on disadvantaged people. But those are an incredibly small percentage. Until the person has clearly shown their intent by causing (or trying to cause) real harm, YOU are the one who is causing real harm by attempting to exclude them. It’s like Trumpty Dumpty and his Muslim ban (and edicts against other residents/immigrants): until the potential immigrant has shown they’re a “bad hombre” (which would likely become apparent through the exhaustive vetting process which is already in place), the only real effect of a ban is to exclude a group which is composed almost entirely of good hombres (y mujeres).

We need to be more welcoming of each other, accepting of each other’s differences, and tolerant of the wide array of perfectly valid opinions that exist in any marginalized community. Discussion and debate is fine. But insulting someone and even questioning their identity…that’s what bigots do to us. That’s the sort of behavior we’re fighting against.

The umbrella of “marginalized people” covers a lot of different sorts of folks, and we all have different experiences of oppression. We all belong to specific subgroups (and subgroups within THOSE subgroups), but the umbrella of “marginalized people” is meant to cover us all. The entire purpose of calling ourselves “marginalized people” is to be inclusive, and to give oppressed people a place where they belong.

There are many who would seek to own that entire umbrella, and try to leave the rest of us out in the rain—or at least huddled on the fringes, drenched in the runoff. They are the people who say, in one way or another, “You can’t possibly understand what REAL oppression is like, because you don’t belong to X subgroup.” We can all hopefully spot the sickening irony in that statement: that the one speaking similarly has no way of knowing what the other person’s experience in Y subgroup is like, either. I have also, horrifyingly, seen people try to exclude others in their own subgroup. If someone doesn’t agree with them on an issue, they attack them for “not being X enough” or “not doing X right”….and then they often turn around and say the other person is the one being oppressive.

Maybe in their head the person who doesn’t agree with them is being oppressive, but in the real world THEY are the one who is excluding the other person, centering themself in the other person’s experience, talking over them, and erasing their feelings. They’re saying very clearly, “I don’t want to be in the same group with the likes of you.” They’re, in fact, doing what non-marginalized people do to us. Furthermore, they’re gaslighting, and they’re forcing the other person to join in the Oppression Olympics by making them justify their right to have an opinion by pointing out all the ways in which they themselves are marginalized. (And then often, are forced to endure being told “you’re really trying to be oppressed, aren’t you?” and “stop playing the marginalization card” and “stop using your marginalization as a shield”, a tactic which is also flaunted so disgustingly by Tronald Dump, who does something, then tries to divert attention from the fact he’s done it by accusing everyone else of doing it. So yeah…those people are in great company, right?)

But no one owns that umbrella, and we shouldn’t try to. We should be happy to share it with others who need it, because doing so doesn’t decrease the amount of space available for us. It’s a super-special sparkly magical umbrella that gets bigger and more effective the more people it covers. All of us have a right to stand under it, and an equal right to speak up as a marginalized person. This applies to other inclusive groups (like Own Voices) or inclusive subgroups (like disabled people), as well. None of us owns the experience. All our experiences are valid, and letting all our voices be heard can only add to the conversation.

If I am speaking as a marginalized person in general, I am not attempting to speak for you, or as a member of your subgroup. It doesn’t matter if you think you are MORE oppressed than I am, or that I don’t understand your experience (of course I don’t, and I’m not trying to say I am). I am a marginalized person, and therefore I have a right to speak as one. Period.

It doesn’t even matter if I name another subgroup and say something like, “I have seen people saying this is happening to X community, and now it is happening to my community as well.” No part of that sort of statement is me trying to speak up as a member of X community. It is me trying to give people context for what is happening to MY community, by using another situation that people are more familiar with (the ND narrative, and I’m finding in particular my psychotic narrative, is so foreign to people they just can’t get it. How can I be proud of my psychosis? It’s BAD. Saying I’m psychotic is equivalent to saying I’m a murderer to most people. I’m not exaggerating. Think about your own reaction to it. And sometimes the only way I can get people to understand is to say, “Think how wrong it would be if you called X marginalized person ‘sick’ or ‘dangerous’ for being who they are?”)

No marginalized experience is the same but there are (very real) commonalities. I am not saying my oppression is greater than or even equal to yours by pointing those out: I’m just making valid observations. Furthermore, I’m not causing you any real harm by doing so. Maybe in your head I am, but in reality, YOU are the one causing ME (and others in my group) harm by saying, “People like you are not worthy to be in the same paragraph as me,” and “That stuff is bad when it happens to x group, but not when it happens to you.” That message is damaging not only to mental health, but to public perceptions of that group of marginalized people. It results in erasure of that group’s experience. It’s an attempt to say that group is “whining” or “faking” or “being a snowflake”. It deepens that group’s oppression, which is supposedly the thing we’re all fighting against.

If it does rub you the wrong way if I mention someone from your group while speaking about my own experience as a marginalized person, take a good look at yourself and ask yourself why you feel that way. As the person causing real, immediate harm, the onus is on you to examine yourself and your motives. Do you have a bias against my group, and you think it’s just gross to stand next to us? Do you think you completely understand our experience and can judge that we’re not really marginalized, we’re just making it up? Or is it, more forgivably, just a misunderstanding—you think I’m trying to speak for your group specifically instead of exploring and pointing out commonalities across the spectrum of the marginalized experience as a whole?

If you think that someone is mistaken and that the commonalities don’t exist, that is definitely a matter for discussion, but if you are saying unilaterally that “you don’t experience that—that’s a thing only my group experiences”, then you’re trying to police and erase that person’s experience, and you’re wasting a very good opportunity for both of you to learn about the other. And if you think it’s bad it’s happening to you, but ok it’s happening to me, then you’re just a bigot and a jerk

Trying to unify a group is NEVER a harmful intent, even if it doesn’t work, or is, in your opinion, misguided. That might require discussion to hash out, but there is no discernable reason to attack a person—especially another marginalized person—whose intent was to do good. However, attempting to divide our groups, exclude people, and do real damage to people’s reputations, employment opportunities, friendships and mental health…that is true harm. That’s not just harm in someone’s head. And, if you are doing real harm—especially to other marginalized people—in the name of preventing hypothetical harm, you’re inarguably the real antagonist in this story.

Another irony of the Oppression Olympics is that it takes a lot of privilege to participate. You have to have the cognitive ability to follow convoluted arguments, the eloquence to respond, the social skills to respond in a way that people might listen to, the emotional stability to endure stressful and emotional situations…not to mention the time and spoons it requires to become involved in these semantic battles. In a practical sense, a lot of marginalized people don’t have the resources to respond appropriately in these situations (especially ND people, who have different social and emotional experiences), and when you attack them, you are taking advantage of their weaknesses—weaknesses that are part and parcel of their experience as a marginalized person—in order to further your own ends. The practical aspects of survival always have to take precedence. We have to earn money somehow, take care of ourselves (eat, bathe, go to the doctor, take our pills), etc.—which can be quite difficult for a marginalized person for a lot of reasons. When you attack them, you are displaying your own privilege in an attempt to harm someone who is already oppressed.

Harming a marginalized person is bad (really, harming any person is). No ifs, ands, or buts. It’s just bad. If you’re doing it, you’d better have a damned good reason. Ask yourself what practical benefits you’re reaping from this exercise, and what your intent was in the first place. Avoiding harm in your head isn’t a good excuse. Simply “being right” isn’t a good excuse, because how can you think you’re right in the first place if you’re harming a marginalized person? If your attempt is to educate, look at the practical results: have you educated anyone? People aren’t going to listen to someone who is insulting them, oppressing them, hurting them. If you get out the belt and severely beat a child in order to teach him not to steal cookies…yeah, maybe the kid shouldn’t be stealing cookies, but who is the one truly doing harm in that situation? Who is the one who really needs educated?

Anger is understandable but abuse is not. Learn how to walk away before you cross that line. If someone is telling you not to abuse them, they’re not policing your anger. They’re standing up for themselves. I’m not talking about white tears here, which is very different.

And if your excuse is that you really do have it worse than the other person, ask yourself how you can possibly know that if you have no experience with their situation, and why it’s so important that you prove it in the first place?

If your excuse is that these seemingly-benign comments or opinions display “passive-aggressive bias” and “hidden prejudice”,you may be right. But frankly, I’ve always found those types of bias reveal themselves in their gross, naked glory if you take the time to scratch off the veneer and see the driving force behind the words. There’s no need to guess. We don’t always have the energy or spoons or ability otherwise to take that time to figure it out, it’s true. But if we don’t, why should we waste the time/energy/spoons we supposedly have a dearth of by being angry at a person who possibly meant no harm, and who caused you no harm except in your head?

And I’m not trying to stray off into “not all X people” territory, I’m just stating something that I, as a marginalized person, have (because of past experience) made incorrect assumptions about a person’s bias more than once, to my (and the other person’s) detriment.

And yes, even if someone isn’t personally displaying bias, they’re still part of the system of bias, which definitely bears thought and scrutiny, but if you attack someone for this you usually get locked in an intellectual battle which rarely has any practical benefit. For instance, if you start screaming at me about how capitalism is my fault because I’m part of the system, that conversation is going to go badly (and not just because I’m less a part of that system than most). So, unless it was I who jumped into your conversation about socialism and said “not all capitalists are bad”, just leave me the fuck out of it. I can only answer for my own actions. That’s all any of us can answer for.

If we’re really going to change the systems of oppression, we have to not model them.

Intent does matter…and practical outcomes matter even more. So if the practical outcome of your behavior is hurting marginalized people, alienating them from their communities, and deepening their oppression, you’re not doing good in the world.

The Oppression Olympics are a sick game that no one can win. We all lose.

Endnote: I’m perfectly willing and even eager to discuss this post with anyone. I will clarify, and own any mistakes, ill-wordings, misinterpretations, or subtleties I may have missed. If I am flat-out wrong somewhere in your opinion, I welcome you to tell me, because that is what conversation is about, and we should always seek to have greater understanding in all things. But really, cue people reinforcing all my points by attacking me…

COVER REVEAL FOR SYNCHRONICITY

It’s less than a month now before the final book in The Other Place Series is released. Synchronicity comes out May 2!

The Other Place Series was really fun to write. Well, maybe “fun” isn’t quite the right word. The stories in the series are, in my opinion, great stories. But they go deeper than that for me.

The Other Place Series starts out with The Hustle, which is a tale of Liria, a young woman battling addiction, homelessness, and abuse. She’s trying to find her place in a world that seems set up to exclude and take advantage of her. It’s often described by readers as “a rollercoaster”. That’s a good description, because that’s what it feels like to deal with those issues.

When I was younger, I was dealing with physical, sexual, and emotional abuse as well as the onset of psychosis. I was addicted to heroin, and went through periods of effective homelessness, as well as incarceration.  Writing The Hustle was a way for me to process those experiences in a way I never had before. It was hard, but it was also a great experience.

The next book in the series, The Other Place, follows Justin, a talented young artist with schizophrenia, as he struggles to find his own place in the world.

Writing The Other Place was my attempt to deal with my deep fear of my own psychosis. When I was younger, I thought I was schizophrenic. It terrified me that I might be. I couldn’t think of anything worse than to be trapped in the horrors of your own mind, caught in a constant, living nightmare. I didn’t tell anyone about my psychosis for decades, and (as I said) self-medicated it with heroin and other things.

My psychotic episodes ended up being infrequent. It turns out I actually am bipolar and have PTSD, not schizophrenia. In writing The Other Place, though, I was exploring that part of myself that I was so afraid of…and discovering that I wasn’t afraid of it anymore. There’s nothing wrong with me, or with anyone with psychosis. It’s not a living nightmare at all, though it can be tough to deal with some symptoms at times.

In writing The Other Place, I also ended up in a close relationship with the man who is now my fiancé, who himself is schizophrenic. When I began hanging out with him, I recognized a lot of my own behaviors in him, and I identified with the way he was treated by society—getting harassed, threatened, physically abused, and kicked out of places when he wasn’t doing anything wrong at all. I started to see myself and my place in society more clearly, and realized that a lot of behaviors I’d been blaming myself for and trying to change, were not things I could or even wanted to change. They were things other people wanted to change about me, because they saw me as abnormal and even dangerous. All those years, I’d been beating up on myself for other people’s prejudice.

Society’s prejudice against people with neurodiversity—the idea that we’re violent, scary, hopeless, helpless, and lacking any kind of beauty or inner life— is so deep-seated that people don’t recognize it as prejudice. Not even I saw it for what it is.

The Other Place Series is an insider’s perspective on how it feels to be an outcast. It shows the prejudice and mistreatment people like me face on a daily basis. Not only was this series a growth experience for me personally, I think it could change the way others think of people with mental health issues.

Besides all that, they’re just good stories. In my opinion, they’d be good stories even if they didn’t deal with addiction or mental health issues at all. After all, people with mental health issues are just people, with their own stories to tell that have nothing at all to do with their diagnoses and addictions.

The last book Synchronicity, is the story of Liria and Justin trying to make a life together, despite all the forces trying to tear them apart. I’m really proud of this book, and I hope you all love it as much as I do.

Are you ready to see the cover? Okay…

 

More Thoughts About Neurotypical Privilege and the Prejudice against Psychotics

I am just now coming back from a long weekend with my partner (I can call him my fiancé now, but it’s gonna take me a while to get used to that).

It was really nice to see him, and we had a good time. We stayed one night in a nice hotel, and mobbed around town like always. We faced fewer problems with the public than we usually do this time, but I wanted to talk a little bit about the treatment we often face.

There’s a lot of prejudice about people with psychosis, and we encounter it not just when we’re having a psychotic break—though that’s certainly the most dangerous time for us, because that’s when our liberty, health, wellbeing, and even lives are most at risk. But just being ourselves on a good day has consequences in society that most people don’t recognize or think about as problems.

Even by myself, I often get tailed by store clerks, and I almost always get told to leave my backpack at the front of the store—it’s not a big backpack, either. It’s about eleven-by-seventeen inches, smaller than most purses, and I never see them ask anyone else with that small of a bag to leave it. My partner, who has schizophrenia, has it worse: he’s often kicked out of stores, accused of shoplifting, or not even allowed in (sometimes he dresses really nicely, but other times he wanders around in his pajamas and slippers. The “No Shirt, No Shoes, No Service” rule is actually very ableist/sanist. There’s nothing wrong with dressing like a slob. Seriously. Get over yourselves).

In hotels (especially nicer ones), we get questioned by the staff, and have to show our keys to prove we’re guests.

In restaurants, we’ve been denied seating. The excuse is often that they’re “full”, but we’re not given the option of waiting. We’ve also (more rarely) been asked to leave because we’re making other diners uncomfortable.

All of this happens not when we’re doing anything illegal, harmful, or even particularly distracting. My partner, and I to a lesser extent, just give off strange vibes. We make people nervous, because they’re conditioned to think of people with psychosis/people who act differently are dangerous.

We’re not dangerous.

I hope you think about this next time you interact with someone like us.

Invisible Friend Jesus and the Resistance

hippieInvisible Friend Jesus sits next to me on my bed. He’s cleaning his toenails with a file, scraping the dirt from under them and flicking it onto my quilt. It’s gross, but part of me wants to save the dirt and put it on display in some cathedral.

“I feel like I should be cleaning your feet for you or something,” I say.

He glances up at me, smirking. “Do you want to?” He holds the file out toward me.

I lean away from it. “Not really.”

He goes back to his task, shrugging. “Cleaning other people’s feet isn’t really part of your culture. It’d be sort of awkward if you wanted to, to tell you the truth.”

“Another thing about my culture,” I say, “while we’re on the subject: cleaning your toenails on someone else’s bed: not really okay. But it’s cool, because we’re friends. The quilt washes.”

He pauses in digging out a particularly stubborn deposit in the corner of his big toe. “Sorry. I didn’t really think about it. My feet were just dirty.”

“Naw, it’s cool, it’s cool. Really.”

He hesitates a moment then, seeing I’m serious, goes back to digging.

I watch him with disgusted fascination. “I didn’t really think about Jesus’ feet getting dirty before. I thought you were perfect in every way.”

He raises an eyebrow. “The Bible talks about my dirty feet. It’s a little embarrassing, but it was necessary to the story, I think.”

“Oh yeah, you’re right.”

He wipes the file on the hem of his suit jacket and starts in on shaping His nails. “I’m a human being. The whole point of me—as a religious concept, anyway—is that I’m a human like any other, with dirty feet and everything. I’m God’s way of showing the world that it’s okay to be human.

“Dirty feet don’t make us ‘imperfect’, anyway,” he continues, “they just make us human.” He frowns in concentration, trying to shape his pinky toenail just so. “It’s the same with all the other stuff that goes along with being human. None of it is imperfection. All the trouble starts when people start blaming and judging others for what they see as their flaws. It’s what I spoke out against, because we would be a lot happier if we’d quit worrying about that stuff and just accepted ourselves and others.”

“I get you,” I say, “but that’s some complicated shit when you get into issues of people’s  beliefs threatening others. I’d say that sort of behavior truly is a ‘flaw’.”

He nods. “I know what you mean. If you’d notice, the Bible talks about how I lost it on a few people for doing stupid and hateful stuff, too.”

I grin. “Yeah, I remember some of that stuff. Those are some of my favorite parts.”

“I can’t say it wasn’t satisfying.” He clips the edge off one of his nails and flicks it away; I wince as it lands on my pillow. “Living on Earth is a complicated thing,” He says. “God understands that. But God is bigger than all that, too. God wants you to forgive your enemies, even for threatening and hurting you. Notice I don’t say ‘embrace’, just ‘forgive’. And I don’t mean we should lie down and let them trample us, but we should forgive them for trying.

“This is not an easy thing to do, when you’re just trying to get by as a mortal person, and assholes keep messing with you and your family—messing with them, or worse,” He says. “God understands that it’s difficult. He knows we won’t always succeed—that we’ll flip our shit sometimes—and forgives us for it. But we’d be a lot happier if we stopped trying to get revenge. Because, in the process, sometimes we end up becoming the thing that we hate: we end up threatening and hurting other people in return. Then those people act out in self-defense and in greater hatred, and the cycle continues.”

“That’s why you forgave the people who crucified you,” I say. “As an example that it can be done by human beings, even in those circumstances.”

He nods, stretching out his legs and wiggling his toes. “Yep. That shit wasn’t easy, but I felt better after I’d done it. Better in my soul, anyway; I was in some pretty bad agony physically, to say the least. But forgiveness helps the forgiver as much as the forgiven.”

I draw my knees up to my chest and hug them. “I wish your followers would listen to you about all this stuff, because my country is really scary right now. It’s starting to look like Nazi Germany. I have a hard time turning the other cheek when people are threatening our health and lives, and when they’re supporting racism, bigotry, and the destruction of society and the environment. And most of the people doing that in the U.S. claim to be Christian.”

He gives me a long look. “Human beings have a long way to go before they find the Kingdom of God. I know it seems like this battle has already been fought, but what a lot of people don’t realize is, their lives are short and the battle is long. The fight is ongoing, and will continue until the Kingdom is achieved. All I can say is, we have made progress. And God is still with us, no matter what.”IMG_2458.JPG