I have suffered from schizophrenia for more than 20 years. It makes me angry when activists trot out the "schizophrenics aren't more violent than the general public" line because it's so obviously untrue. When I was in the midst of my delusions, I acted out in horrible ways, and I know a lot of schizophrenics who have done the same. Stigma is basically a "luxury concern," something you are free to worry about once your illness is under control and you are trying to re-integrate into society. The emphasis should be on getting people the treatment they need (whether voluntary or not) and not on forcing the public to be more tolerant of a population that often acts out in bizarre and dangerous ways.
The failure to address and prevent crimes committed by schizophrenics has disastrous consequences for schizophrenics.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3612963/ This article cites some staggering stats from the United States Bureau of Justice Statistics about the percentages of prisoners with schizophrenia and similar disorders. Around 10% of federal prisoners and almost a quarter of people in local jails met criteria for a psychotic disorder, with schizophrenia the most common. There seems to be some disagreement about these numbers from other sources, but every source I looked at indicates schizophrenics are far more likely to be incarcerated than the average person. I think the solution probably involves more civil commitments to mental health institutions and semi-supervised group home type living situations. I’ve been in the mental hospital as a patient. It’s a really lousy place to be, but it’s safe, treatment is provided, and it’s a lot less restrictive than a prison. I don’t think prisons are the right place for most schizophrenics, especially ones who don’t even have a good understanding of why they did what they did.
Yeah, this is another area of underrated harm. If “no stigma” means “no treatment till they commit a crime bad enough we can’t ignore it” then we are hurting, not helping.
I'm President of National Council on Severe Autism and wish to say - you took the words right out of our mouth. Thank you for pointing out this dangerous trend to sanitize language in a way that can only undermine the actual needs of individuals and families suffering with severe neuropsychiatric disorders. The autism world has become overrun by a vocal minority on a crusade to wipe out accurate language in an effort to "reduce stigma" and, in essence normalize completely abnormal development and behavior. Stigma is the least of our community's concerns. They need their dire realities — aggression, self-injury, fecal smearing, screaming, and all the not-pretty stuff — to be top of the agenda. Saying "everything's dandy" betrays our children and their suffering.
At the age of 18 I got handed a folder filled with clippings about this "Asperger's syndrome" that my mother and grandmother decided I had. Never got an adult diagnosis but I am in the 97th percentile as far as intelligence goes.
Yeah, I'm really smart and have an excellent memory for little details; I also get paralyzed by indecision when I spill a drink, lose track of objects as soon as I set them down, and seem to be magnetically attracted to anything that will bruise me when I move about the house. I'm fortunate and even so it's not all roses. Those poor bastards who lack my gifts but have even worse disabilities shouldn't be so poorly served.
Likewise. I'm sure if I'd been born a little later (or had parents so inclined), I'd have the ADHD diagnosis. But I have 4 degrees, and there's a point where claiming to be "neurodiverse" just sounds like an attempt to fabricate a personality (or make excuses for being a jerk).
And it's a clever linguistic trick. Diversity is good! Being diverse sounds quirky and creative (and in the current fashion, something other than white/het/normies, which every "neurodiverse" person I've ever met is).
It's not so fun and diverse for people who will likely never hold a job or live unsupervised.
Another thing that needs to be pushed back on is the idea that “lived experience” automatically trumps scientific evidence.
Part of the problem here is that, within these “shallow allyship” circles, we’ve elevated the personal narrative to be the highest form of truth, where questioning of such narratives is discouraged as bigotry.
Which is of course problematic if the individuals giving the personal narratives are not representative. But how can they be representative? Having a voice in these allyship spaces is itself a mark of privilege. If you’re a nonverbal autistic, you have no voice by definition. So the “personal narratives” of autism are dominated by the people who build a positive identity about their cute and creative neurodivergence. Trans activism is dominated by trans individuals who are surest of themselves, living activist lives. Black Lives Matter is dominated by relatively well off and educated black people. And so on and so on.
The plural of anecdote is not data, and this is especially true when the anecdotes are drawn from a self-selected subclass not representative of the group they claim to speak for.
Used to be that a scientist saying "I have a personal stake in this issue" would raise questions of bias and conflict of interest. Now it seems like it's perceived by some as a plus.
“I don’t have any great ideas about how to fight back against this type of shallow allyship.”
I think a good place to start is to reject concepts like “allyship”. All allyship is shallow. It’s a term awarded for nodding at the right moments. It’s meaningless.
What work that needs to be done is going to be done by people with skin in the game and medical professionals paid to figure something out. Everyone else needs to get out of the way or donate money and then get out of the way. Anything that smells like earning points is a net negative.
The term "ally" has gained a strange new meaning in the last ten years, hasn't it?
I always thought of allies as people with whom one shares common interests. Fifteen years ago, Dick Cheney would have been an ally to gay people on same-sex marriage. That doesn't mean he'd praise us in general, or stand between us and police, or say whatever we told him to say, and it certainly wouldn't mean he was a good person or someone we'd invite to a party. However, most of the time, we could count on his help with marriage rights issues.
These days, however, allies seem expected to serve as sources of money and emotional support, to be moral cheerleaders and ego-strokers, and to be both literal body-shields and political mouthpieces. But they should never take credit for any of this, lest they "center" themselves. So they are your mom, your therapist, your best friend, and your bodyguard, all in one.
All I can say is that must be nice to come of age in a time when your allies are so thick on the ground you can treat them with the self-righteous entitlement I so often see.
"All allyship is shallow. It’s a term awarded for nodding at the right moments. It’s meaningless."
That's a great way of putting it. I used to see it much more favorably than I do. I used to work in politics so I used to register people to vote and encourage them to be politically active. But over the past several years I've come to feel like being politically active is genuinely bad for many people's psyches. Too many people are too insecure and have too few meaningful things going on in their lives to give them a sense of purpose. They get too caught up in getting digital pats on the back for "nodding at the right moments," then get further snared by extremist ideologies and become obnoxious shells of their old selves. They end up harming the causes they advocate by beclowning themselves online, attaching frivolous, whiny, absurd, and frankly snotty baggage to issues that used to be serious.
Now I wish people would either vote or donate, and move along. If someone supports any of my "identities" -- that term makes me cringe -- I hope nothing more than they'll shut up about it. "Allies" nowadays are people who can be relied upon to play down truly serious issues, and play up truly stupid non-issues.
Someone I love often wears a T-shirt saying "Stand with black women." (She herself is not black and has no close ties with any black women.) I want to ask her "What policies does that mean you support? How do you know that they would help black women? What happens when black women disagree with each other--how would you choose who to 'stand with'?" Unfortunately it would be very hard to have that conversation.
Shallow allyship also seems like an appropriate name for GLAAD placing Jesse on their so-called "Accountability Project" list. Jesse depicted current problems with the state of transgender health care. He was targeted as a bigot for reporting on that issue, assumedly as an outsider of that community.
I am currently rereading Randy Shilts's "And the Band Played On." In it, Shilts decried the gay leaders who refused to call for the closure of bathhouses in San Francisco or put a ban on blood donation from those in high-risk communities at the height of the AIDS crisis. Such potentially life-saving moves were seen as stigmatizing. Comforting fictions have led to many destroyed lives throughout history.
The cries of ‘how dare you take away my freedom to engage in an incredibly high risk activity that will probably lead to my very painful death, and possibly the deaths of others I love’ is just kind-boggling to me. But COVID showed that this attitude is alive and well.
Our society seems to think of freedom and responsibility as two extremes on the same continuum, reminiscent of the parent/child power dynamic. For example, responsibility to an adolescent may mean not going out on a school night. Thank goodness that parents are there to help guide the child to make that decision. As we mature, I think we find real freedom in responsibility. In his Nicomachean Ethics, Aristotle discussed happiness as the ultimate good found in moderation. In the research Jesse cites, those decrying its publication feel that they are doing a responsible thing by restricting a certain form of speech. They are trying to protect vulnerable people from undo harm; they are being parents. This invocation of responsibility, however, infantilizes those with mental illness and underestimates the general society's ability to handle such findings appropriately.
I say this with the latest school shooting weighing on me. My faith in general society to act responsibly is low right now. If a law would help get guns out of dangerous people's hands, I am for that. I hate what that says about our society, such that we need the government to pass a law to get people to take common-sense measures.
It needs to be endlessly repeated: the biggest issue facing people with psychological disorders is the symptoms of their psychological disorder. Sure people with Avoidant Personality Disorder face stigma, but curing stigma isn't going to give them friends. They lack friends because talking to people (even very supportive ones) comes with an endless thought of "they hate me. They only keep me around to not hurt me".
There’s some sort of movement in my state to rebrand mental health as brain health to help fight stigma surrounding mental illness. https://www.brainhealth-now.org/
As someone with mental health issues, I would rather they use their resources on just about anything else! I submitted a comment along these lines on their website and, unsurprisingly, never heard back. Presumably, it’s far easier to put up some billboards and engage in some performative activism about language than actually do anything to help treat mental illness.
We should aspire to love and care about people enough that it’s okay if they are mad at us for a little while.
I’ve often wondered by what leap someone thinks it kinder to let a schizophrenic person die uncared for on the street than to risk their temporary ire by taking them in and caring for them until they hopefully become well enough to make a decision. Yes, that’s fraught with risks but if the only other solution is to let someone waste away outdoors in a cardboard hovel we should figure it out.
This was a really good piece. I wish we had better options here but you put words to something I hate, which is when people turn their face away from something they don’t want to see and call it kindness.
Cases like Rivers v Katz (NY) were all about how nobody can be forced to be treated, and if they want to live in a ditch how dare you stop them. It is cruel, but so many people have the "One flew over the cuckoo's nest" vision of mental hospitals. They think sleeping in a ditch is truly better. Or better for the abstract patient. I'm sure if it were their kid they'd be all for inpatient care.
(It's fascinating to see the same civil liberties types who lose their shit at the thought of forcible mental health treatment take the opposite position on covid vaxx and mask wearing too).
A friend of a friend had a horrible, just Kafka-esque experiences with the mental health system. It's rarer than it once was, but yeah, it still happens that people have traumatic experiences with overly-restrictive mental health systems and think, "okay, the important thing is preventing shit like this from happening to anyone else".
Is it logical, rational, whatever? No. Horrible truth is, contra the popular discourse, the traumatized are usually the last people you want making decisions about anything involving their trauma. But it's a very human response for someone to overestimate the threat and damage of something that's happened to them, and that makes for a frustrating, infuriating story.
Scott Alexander, a psychiatrist, has written a few times about how he is very glad we can't just involuntarily commit people at will any more.
It doesn't need to be all or nothing. But once someone expresses a desire to not be committed, we should have to hop through at least a few hoops to override their will.
Isn't this just a symptom of the broader phenomenon of designating some humans as a special class (the ones needing "allies"), and therefore outlawing any criticism of that group, or pathologising of their culture or behavior?
If you suggest that a screaming mentally ill man on a subway platform is a problem, you're just a bigot - and the focus is now on why you are such a bigot, not on this crazy person acting dangerously around trains.
We are allowed to handwave in a general way about "mental illness" when someone's just shot up a school, but not to take the next step and suggest that actually involuntary commitment for some might be a good idea.
Many people probably remember the horrible incident where a young man was dismembered and eaten on a Greyhound bus in Manitoba. The podcast Dark Poutine did an in-depth report on the case which is worth listening to.
The man who had committed the act was in the midst of a psychotic break and suffers from schizophrenia. He was under the delusion that the other man was an alien who was trying to harm him, and the only way to save himself was to do what he did. This was a case that attracted plenty of attention, since it was such an unusual, unpredictable, and brutal murder. On top of that, it generated a debate within Canada about how to deal with people who commit acts of violence in a psychotic state.
The courts deemed him not criminally responsible due to his lack of mens rea, and he was released into a psychiatric care facility instead of a prison. He started treatment for schizophrenia and was placed on medications, and from the accounts I’ve heard, stopped having delusions. One journalist did an interview with the man a few years later, detailing his thoughts on the incident and what his life has been like subsequently (link is here: https://steinbachonline.com/local/a-conversation-with-vince-li).
I am a bit of a bleeding heart, so I know a lot of people might roll their eyes when I talk about this. I feel terrible the victim and his community, but i also feel sad for the perpetrator and his community. I cannot imagine the pain of knowing that you committed an act of horrible violence in a state of psychosis, and knowing that people around the world see you as a monster because of it.
I worry that if we simply try to deny the fact that schizophrenia can cause people to be violent, we are doing a disservice to the very people we’re trying to defend. We’re saying that this man, who was an engineer with no previous history of violence, was not driven to kill and eat a man because he was experiencing a break from reality, but because he had malicious intentions. Now imagine the implications that would have for people with these types of illnesses. Rather than giving them the treatment they need to function properly, we’d be punishing them and placing them in situations that would be unlikely to improve their conditions. We know that with proper treatment and medication, many people with illnesses like schizophrenia can function in day-to-day life, and we’d be denying them that opportunity.
When we say that schizophrenia can cause people to have violent incidents, we are making a distinction between the “unwell self” and the “functional self.” We are giving people with psychotic symptoms the ability to say “this is not who I really am, and if i was able to control it, this wouldn’t be happening.” I find the implications of the “schizophrenia doesn’t cause any violence” to be cruel and uncharitable for the very real people who struggle with that exact issue. If we want people to get the treatment they need and reduce the stigma directed at people with an illness like schizophrenia, we need to acknowledge the true harms of the disease.
That incident has stuck with me ever since it happened so I appreciate the link to the interview. I agree with you completely, it sends a very cruel message to people who have been violent in a psychotic state that their psychosis was not the cause. It's far more humane to acknowledge that psychosis can understandably cause one to behave violently.
Thank you for addressing this. My mother is schizophrenic and on monthly injections to control it. She can barely talk, is incontinent and not motivated to keep herself clean. I am frustrated that because she is controllable with drugs she is largely ignored, by health professionals and guilty because I didn’t advocate for better years ago. I am the only person who wants to name the condition and talk about it.
Fantastic piece. (I thought deBoer's “Gentrification of Disability” was excellent, too.) I wish it were more common to state the obvious: We should avoid stigmatizing people with mental-health disorders while still working to help alleviate their symptoms. It troubles me that the refusal to do so may be having an impact on how researchers carry out and respond to studies like this meta-analysis.
To readers interested in a qualitative but still reportorial look at both schizophrenia and autism I'd recommend chapters 5–6 of Andrew Solomon's 2013 book, Far From the Tree: Parents, Children and the Search for Identity. While Solomon's book as a whole is focused on parents and children who differ from each other in extreme ways, the several chapters that discuss particular disabilities are relevant to this discussion. Solomon interviews many families dealing with these disorders. He offers an excellent picture of what these families experience without too much pandering to the celebrate-everything style of activism that dominates online and activist discussions today. Although I'm not personally persuaded by his use of "identity" as a helpful category, the book offers so many specific depictions of families' lives that I think it's still very much worth reading. The chapter on schizophrenia, in particular, is unforgettable, and I've had many occasions to call it to mind since I read it some years ago.
This isn’t a counter argument, but it is a caveat.
Bipolar disorder may not need allies and it certainly doesn’t need to be romanticized, but society could, indeed, benefit from a much greater awareness of how it plays out. There are an astonishing number of suicides (as well as criminal behavior that is attributed primarily to alcohol) that are the result of undiagnosed bipolar disorder.
I would have put up with a few insufferable books by privileged, attractive young authors if it had led me to pick up from general cultural osmosis an understanding that an endearingly “crazy drunk” I was close to was, in fact, dealing with an undiagnosed mental illness that might kill him in a very ugly (and awful for his family) manner.
As for autism, a greater awareness of Aspergers is, I’d argue, a clear net positive.
The question Freddie and Jesse have to address is this: Are they treating something very distasteful (romanticizing mental illness for book deals, applying a moronic gloss of affirmation and positivity on a pathology) as invariably very harmful when it’s simply offensive and annoying?
Clearly suppressing information about schizophrenia is harmful and shouldn’t be done.
The other stuff can be both infuriating and obscene, but “awareness” (as flaky as it sounds and as suspect as the motives of many of its proponents may be) is often helpful.
> As for autism, a greater awareness of Aspergers is, I’d argue, a clear net positive.
Ah, but you missed the memo. The "stigma" of Autism means that we can't refers to high-function autistic people (the same people Jesse talks about in the article) as having Aspergers anymore. They are just people on the "autism spectrum", the same as non-verbal people who can't even use the bathroom on their own. This is another case of "shallow allyship" in the flesh.
Fair call. The use of the word “spectrum” in “autism spectrum disorder” always throws me from using “on the the spectrum.” Not sure why.
Anyway -- if my parents know what “Aspergers” is (overall good that they know) and one of their grandchildren scolds them (or me) for using the term as it’s now an inappropriate, rude word (overall bad that that the kids scold), I’d argue this current situation still represents a huge advance from when we all would have just used the word “weirdo” or “nerd” to refer to someone.
Brings to mind this Hannah Gadsby essay about her very-special-and-interesting autism. Amazing celebrities now get to launder their narcissism as social justice.
At one point she makes sure to note she does not “identify as nonverbal”. She has made millions from public verbal performances.
There is a bit in her post-Nanette special where she says that autism is not a disability except that the world makes it difficult for people with it to function.
Her point seems to be that antivaxxers are wrong to be worried about their kid having or getting autism. She says autistic people (I guess the verbal-identifying ones) should be included in the conversation about vaccines. Seems like it could muddy the message a bit.
A relevant quote from the same Gadsby essay: "Meltdowns are equally distressing, but for different reasons. The worst is knowing that I am out of control, and may accidentally injure myself or, worse, someone else."
While I'm more on the side of "people shouldn't be committed against their will" debate, people should definitely be able to fill out a form with a doctor that says "I'm in control of my facilities now, but know damn well I might not be in the future, and so I now give the authorities the right to toss me in a facility until I calm down if things go to shit."
Tumblr has been making kids think they're on the spectrum for a decade now. You should be flattered, because as best I can tell any trait associated with self-actualization or enthusiasm is autism, actually.
"But I do think it’s important, as futile as it seems, to endlessly hammer home the point that those claiming to speak on behalf of “marginalized people” are often doing so in a strikingly superficial and counterproductive manner."
Yes, like putting up a yard sign, proclaiming one's virtue....
I'll confess to having put up one of those "In this house we believe..." yard signs shortly after the 2016 election. It started to bug me pretty quickly and I took it down after a few months. In retrospect, I see it as an expression of not only performative shallow allyship, but also ideological sorting--since I agree with one position on this sign, of course I agree with the rest. Very simplistic.
I have suffered from schizophrenia for more than 20 years. It makes me angry when activists trot out the "schizophrenics aren't more violent than the general public" line because it's so obviously untrue. When I was in the midst of my delusions, I acted out in horrible ways, and I know a lot of schizophrenics who have done the same. Stigma is basically a "luxury concern," something you are free to worry about once your illness is under control and you are trying to re-integrate into society. The emphasis should be on getting people the treatment they need (whether voluntary or not) and not on forcing the public to be more tolerant of a population that often acts out in bizarre and dangerous ways.
Thanks. I will.
The failure to address and prevent crimes committed by schizophrenics has disastrous consequences for schizophrenics.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3612963/ This article cites some staggering stats from the United States Bureau of Justice Statistics about the percentages of prisoners with schizophrenia and similar disorders. Around 10% of federal prisoners and almost a quarter of people in local jails met criteria for a psychotic disorder, with schizophrenia the most common. There seems to be some disagreement about these numbers from other sources, but every source I looked at indicates schizophrenics are far more likely to be incarcerated than the average person. I think the solution probably involves more civil commitments to mental health institutions and semi-supervised group home type living situations. I’ve been in the mental hospital as a patient. It’s a really lousy place to be, but it’s safe, treatment is provided, and it’s a lot less restrictive than a prison. I don’t think prisons are the right place for most schizophrenics, especially ones who don’t even have a good understanding of why they did what they did.
Yeah, this is another area of underrated harm. If “no stigma” means “no treatment till they commit a crime bad enough we can’t ignore it” then we are hurting, not helping.
I'm President of National Council on Severe Autism and wish to say - you took the words right out of our mouth. Thank you for pointing out this dangerous trend to sanitize language in a way that can only undermine the actual needs of individuals and families suffering with severe neuropsychiatric disorders. The autism world has become overrun by a vocal minority on a crusade to wipe out accurate language in an effort to "reduce stigma" and, in essence normalize completely abnormal development and behavior. Stigma is the least of our community's concerns. They need their dire realities — aggression, self-injury, fecal smearing, screaming, and all the not-pretty stuff — to be top of the agenda. Saying "everything's dandy" betrays our children and their suffering.
At the age of 18 I got handed a folder filled with clippings about this "Asperger's syndrome" that my mother and grandmother decided I had. Never got an adult diagnosis but I am in the 97th percentile as far as intelligence goes.
Yeah, I'm really smart and have an excellent memory for little details; I also get paralyzed by indecision when I spill a drink, lose track of objects as soon as I set them down, and seem to be magnetically attracted to anything that will bruise me when I move about the house. I'm fortunate and even so it's not all roses. Those poor bastards who lack my gifts but have even worse disabilities shouldn't be so poorly served.
Likewise. I'm sure if I'd been born a little later (or had parents so inclined), I'd have the ADHD diagnosis. But I have 4 degrees, and there's a point where claiming to be "neurodiverse" just sounds like an attempt to fabricate a personality (or make excuses for being a jerk).
And it's a clever linguistic trick. Diversity is good! Being diverse sounds quirky and creative (and in the current fashion, something other than white/het/normies, which every "neurodiverse" person I've ever met is).
It's not so fun and diverse for people who will likely never hold a job or live unsupervised.
Another thing that needs to be pushed back on is the idea that “lived experience” automatically trumps scientific evidence.
Part of the problem here is that, within these “shallow allyship” circles, we’ve elevated the personal narrative to be the highest form of truth, where questioning of such narratives is discouraged as bigotry.
Which is of course problematic if the individuals giving the personal narratives are not representative. But how can they be representative? Having a voice in these allyship spaces is itself a mark of privilege. If you’re a nonverbal autistic, you have no voice by definition. So the “personal narratives” of autism are dominated by the people who build a positive identity about their cute and creative neurodivergence. Trans activism is dominated by trans individuals who are surest of themselves, living activist lives. Black Lives Matter is dominated by relatively well off and educated black people. And so on and so on.
The plural of anecdote is not data, and this is especially true when the anecdotes are drawn from a self-selected subclass not representative of the group they claim to speak for.
Used to be that a scientist saying "I have a personal stake in this issue" would raise questions of bias and conflict of interest. Now it seems like it's perceived by some as a plus.
“I don’t have any great ideas about how to fight back against this type of shallow allyship.”
I think a good place to start is to reject concepts like “allyship”. All allyship is shallow. It’s a term awarded for nodding at the right moments. It’s meaningless.
What work that needs to be done is going to be done by people with skin in the game and medical professionals paid to figure something out. Everyone else needs to get out of the way or donate money and then get out of the way. Anything that smells like earning points is a net negative.
The term "ally" has gained a strange new meaning in the last ten years, hasn't it?
I always thought of allies as people with whom one shares common interests. Fifteen years ago, Dick Cheney would have been an ally to gay people on same-sex marriage. That doesn't mean he'd praise us in general, or stand between us and police, or say whatever we told him to say, and it certainly wouldn't mean he was a good person or someone we'd invite to a party. However, most of the time, we could count on his help with marriage rights issues.
These days, however, allies seem expected to serve as sources of money and emotional support, to be moral cheerleaders and ego-strokers, and to be both literal body-shields and political mouthpieces. But they should never take credit for any of this, lest they "center" themselves. So they are your mom, your therapist, your best friend, and your bodyguard, all in one.
All I can say is that must be nice to come of age in a time when your allies are so thick on the ground you can treat them with the self-righteous entitlement I so often see.
"All allyship is shallow. It’s a term awarded for nodding at the right moments. It’s meaningless."
That's a great way of putting it. I used to see it much more favorably than I do. I used to work in politics so I used to register people to vote and encourage them to be politically active. But over the past several years I've come to feel like being politically active is genuinely bad for many people's psyches. Too many people are too insecure and have too few meaningful things going on in their lives to give them a sense of purpose. They get too caught up in getting digital pats on the back for "nodding at the right moments," then get further snared by extremist ideologies and become obnoxious shells of their old selves. They end up harming the causes they advocate by beclowning themselves online, attaching frivolous, whiny, absurd, and frankly snotty baggage to issues that used to be serious.
Now I wish people would either vote or donate, and move along. If someone supports any of my "identities" -- that term makes me cringe -- I hope nothing more than they'll shut up about it. "Allies" nowadays are people who can be relied upon to play down truly serious issues, and play up truly stupid non-issues.
Someone I love often wears a T-shirt saying "Stand with black women." (She herself is not black and has no close ties with any black women.) I want to ask her "What policies does that mean you support? How do you know that they would help black women? What happens when black women disagree with each other--how would you choose who to 'stand with'?" Unfortunately it would be very hard to have that conversation.
I agree. I don't need allies. It would make me feel ridiculous lol.
Shallow allyship also seems like an appropriate name for GLAAD placing Jesse on their so-called "Accountability Project" list. Jesse depicted current problems with the state of transgender health care. He was targeted as a bigot for reporting on that issue, assumedly as an outsider of that community.
I am currently rereading Randy Shilts's "And the Band Played On." In it, Shilts decried the gay leaders who refused to call for the closure of bathhouses in San Francisco or put a ban on blood donation from those in high-risk communities at the height of the AIDS crisis. Such potentially life-saving moves were seen as stigmatizing. Comforting fictions have led to many destroyed lives throughout history.
The cries of ‘how dare you take away my freedom to engage in an incredibly high risk activity that will probably lead to my very painful death, and possibly the deaths of others I love’ is just kind-boggling to me. But COVID showed that this attitude is alive and well.
Our society seems to think of freedom and responsibility as two extremes on the same continuum, reminiscent of the parent/child power dynamic. For example, responsibility to an adolescent may mean not going out on a school night. Thank goodness that parents are there to help guide the child to make that decision. As we mature, I think we find real freedom in responsibility. In his Nicomachean Ethics, Aristotle discussed happiness as the ultimate good found in moderation. In the research Jesse cites, those decrying its publication feel that they are doing a responsible thing by restricting a certain form of speech. They are trying to protect vulnerable people from undo harm; they are being parents. This invocation of responsibility, however, infantilizes those with mental illness and underestimates the general society's ability to handle such findings appropriately.
I say this with the latest school shooting weighing on me. My faith in general society to act responsibly is low right now. If a law would help get guns out of dangerous people's hands, I am for that. I hate what that says about our society, such that we need the government to pass a law to get people to take common-sense measures.
It needs to be endlessly repeated: the biggest issue facing people with psychological disorders is the symptoms of their psychological disorder. Sure people with Avoidant Personality Disorder face stigma, but curing stigma isn't going to give them friends. They lack friends because talking to people (even very supportive ones) comes with an endless thought of "they hate me. They only keep me around to not hurt me".
There’s some sort of movement in my state to rebrand mental health as brain health to help fight stigma surrounding mental illness. https://www.brainhealth-now.org/
As someone with mental health issues, I would rather they use their resources on just about anything else! I submitted a comment along these lines on their website and, unsurprisingly, never heard back. Presumably, it’s far easier to put up some billboards and engage in some performative activism about language than actually do anything to help treat mental illness.
We should aspire to love and care about people enough that it’s okay if they are mad at us for a little while.
I’ve often wondered by what leap someone thinks it kinder to let a schizophrenic person die uncared for on the street than to risk their temporary ire by taking them in and caring for them until they hopefully become well enough to make a decision. Yes, that’s fraught with risks but if the only other solution is to let someone waste away outdoors in a cardboard hovel we should figure it out.
This was a really good piece. I wish we had better options here but you put words to something I hate, which is when people turn their face away from something they don’t want to see and call it kindness.
Cases like Rivers v Katz (NY) were all about how nobody can be forced to be treated, and if they want to live in a ditch how dare you stop them. It is cruel, but so many people have the "One flew over the cuckoo's nest" vision of mental hospitals. They think sleeping in a ditch is truly better. Or better for the abstract patient. I'm sure if it were their kid they'd be all for inpatient care.
(It's fascinating to see the same civil liberties types who lose their shit at the thought of forcible mental health treatment take the opposite position on covid vaxx and mask wearing too).
A friend of a friend had a horrible, just Kafka-esque experiences with the mental health system. It's rarer than it once was, but yeah, it still happens that people have traumatic experiences with overly-restrictive mental health systems and think, "okay, the important thing is preventing shit like this from happening to anyone else".
Is it logical, rational, whatever? No. Horrible truth is, contra the popular discourse, the traumatized are usually the last people you want making decisions about anything involving their trauma. But it's a very human response for someone to overestimate the threat and damage of something that's happened to them, and that makes for a frustrating, infuriating story.
Scott Alexander, a psychiatrist, has written a few times about how he is very glad we can't just involuntarily commit people at will any more.
It doesn't need to be all or nothing. But once someone expresses a desire to not be committed, we should have to hop through at least a few hoops to override their will.
Isn't this just a symptom of the broader phenomenon of designating some humans as a special class (the ones needing "allies"), and therefore outlawing any criticism of that group, or pathologising of their culture or behavior?
If you suggest that a screaming mentally ill man on a subway platform is a problem, you're just a bigot - and the focus is now on why you are such a bigot, not on this crazy person acting dangerously around trains.
We are allowed to handwave in a general way about "mental illness" when someone's just shot up a school, but not to take the next step and suggest that actually involuntary commitment for some might be a good idea.
Many people probably remember the horrible incident where a young man was dismembered and eaten on a Greyhound bus in Manitoba. The podcast Dark Poutine did an in-depth report on the case which is worth listening to.
The man who had committed the act was in the midst of a psychotic break and suffers from schizophrenia. He was under the delusion that the other man was an alien who was trying to harm him, and the only way to save himself was to do what he did. This was a case that attracted plenty of attention, since it was such an unusual, unpredictable, and brutal murder. On top of that, it generated a debate within Canada about how to deal with people who commit acts of violence in a psychotic state.
The courts deemed him not criminally responsible due to his lack of mens rea, and he was released into a psychiatric care facility instead of a prison. He started treatment for schizophrenia and was placed on medications, and from the accounts I’ve heard, stopped having delusions. One journalist did an interview with the man a few years later, detailing his thoughts on the incident and what his life has been like subsequently (link is here: https://steinbachonline.com/local/a-conversation-with-vince-li).
I am a bit of a bleeding heart, so I know a lot of people might roll their eyes when I talk about this. I feel terrible the victim and his community, but i also feel sad for the perpetrator and his community. I cannot imagine the pain of knowing that you committed an act of horrible violence in a state of psychosis, and knowing that people around the world see you as a monster because of it.
I worry that if we simply try to deny the fact that schizophrenia can cause people to be violent, we are doing a disservice to the very people we’re trying to defend. We’re saying that this man, who was an engineer with no previous history of violence, was not driven to kill and eat a man because he was experiencing a break from reality, but because he had malicious intentions. Now imagine the implications that would have for people with these types of illnesses. Rather than giving them the treatment they need to function properly, we’d be punishing them and placing them in situations that would be unlikely to improve their conditions. We know that with proper treatment and medication, many people with illnesses like schizophrenia can function in day-to-day life, and we’d be denying them that opportunity.
When we say that schizophrenia can cause people to have violent incidents, we are making a distinction between the “unwell self” and the “functional self.” We are giving people with psychotic symptoms the ability to say “this is not who I really am, and if i was able to control it, this wouldn’t be happening.” I find the implications of the “schizophrenia doesn’t cause any violence” to be cruel and uncharitable for the very real people who struggle with that exact issue. If we want people to get the treatment they need and reduce the stigma directed at people with an illness like schizophrenia, we need to acknowledge the true harms of the disease.
That incident has stuck with me ever since it happened so I appreciate the link to the interview. I agree with you completely, it sends a very cruel message to people who have been violent in a psychotic state that their psychosis was not the cause. It's far more humane to acknowledge that psychosis can understandably cause one to behave violently.
Thank you for addressing this. My mother is schizophrenic and on monthly injections to control it. She can barely talk, is incontinent and not motivated to keep herself clean. I am frustrated that because she is controllable with drugs she is largely ignored, by health professionals and guilty because I didn’t advocate for better years ago. I am the only person who wants to name the condition and talk about it.
Fantastic piece. (I thought deBoer's “Gentrification of Disability” was excellent, too.) I wish it were more common to state the obvious: We should avoid stigmatizing people with mental-health disorders while still working to help alleviate their symptoms. It troubles me that the refusal to do so may be having an impact on how researchers carry out and respond to studies like this meta-analysis.
To readers interested in a qualitative but still reportorial look at both schizophrenia and autism I'd recommend chapters 5–6 of Andrew Solomon's 2013 book, Far From the Tree: Parents, Children and the Search for Identity. While Solomon's book as a whole is focused on parents and children who differ from each other in extreme ways, the several chapters that discuss particular disabilities are relevant to this discussion. Solomon interviews many families dealing with these disorders. He offers an excellent picture of what these families experience without too much pandering to the celebrate-everything style of activism that dominates online and activist discussions today. Although I'm not personally persuaded by his use of "identity" as a helpful category, the book offers so many specific depictions of families' lives that I think it's still very much worth reading. The chapter on schizophrenia, in particular, is unforgettable, and I've had many occasions to call it to mind since I read it some years ago.
This isn’t a counter argument, but it is a caveat.
Bipolar disorder may not need allies and it certainly doesn’t need to be romanticized, but society could, indeed, benefit from a much greater awareness of how it plays out. There are an astonishing number of suicides (as well as criminal behavior that is attributed primarily to alcohol) that are the result of undiagnosed bipolar disorder.
I would have put up with a few insufferable books by privileged, attractive young authors if it had led me to pick up from general cultural osmosis an understanding that an endearingly “crazy drunk” I was close to was, in fact, dealing with an undiagnosed mental illness that might kill him in a very ugly (and awful for his family) manner.
As for autism, a greater awareness of Aspergers is, I’d argue, a clear net positive.
The question Freddie and Jesse have to address is this: Are they treating something very distasteful (romanticizing mental illness for book deals, applying a moronic gloss of affirmation and positivity on a pathology) as invariably very harmful when it’s simply offensive and annoying?
Clearly suppressing information about schizophrenia is harmful and shouldn’t be done.
The other stuff can be both infuriating and obscene, but “awareness” (as flaky as it sounds and as suspect as the motives of many of its proponents may be) is often helpful.
> As for autism, a greater awareness of Aspergers is, I’d argue, a clear net positive.
Ah, but you missed the memo. The "stigma" of Autism means that we can't refers to high-function autistic people (the same people Jesse talks about in the article) as having Aspergers anymore. They are just people on the "autism spectrum", the same as non-verbal people who can't even use the bathroom on their own. This is another case of "shallow allyship" in the flesh.
Fair call. The use of the word “spectrum” in “autism spectrum disorder” always throws me from using “on the the spectrum.” Not sure why.
Anyway -- if my parents know what “Aspergers” is (overall good that they know) and one of their grandchildren scolds them (or me) for using the term as it’s now an inappropriate, rude word (overall bad that that the kids scold), I’d argue this current situation still represents a huge advance from when we all would have just used the word “weirdo” or “nerd” to refer to someone.
Upvote especially for the bipolar part. My friends' marriage just ended due to untreated bipolar - and refusal to acknowledge it - of one spouse.
Brings to mind this Hannah Gadsby essay about her very-special-and-interesting autism. Amazing celebrities now get to launder their narcissism as social justice.
https://www.theguardian.com/stage/2022/mar/19/hannah-gadsby-autism-diagnosis-little-out-of-whack
At one point she makes sure to note she does not “identify as nonverbal”. She has made millions from public verbal performances.
There is a bit in her post-Nanette special where she says that autism is not a disability except that the world makes it difficult for people with it to function.
Her point seems to be that antivaxxers are wrong to be worried about their kid having or getting autism. She says autistic people (I guess the verbal-identifying ones) should be included in the conversation about vaccines. Seems like it could muddy the message a bit.
A relevant quote from the same Gadsby essay: "Meltdowns are equally distressing, but for different reasons. The worst is knowing that I am out of control, and may accidentally injure myself or, worse, someone else."
While I'm more on the side of "people shouldn't be committed against their will" debate, people should definitely be able to fill out a form with a doctor that says "I'm in control of my facilities now, but know damn well I might not be in the future, and so I now give the authorities the right to toss me in a facility until I calm down if things go to shit."
Tumblr has been making kids think they're on the spectrum for a decade now. You should be flattered, because as best I can tell any trait associated with self-actualization or enthusiasm is autism, actually.
"But I do think it’s important, as futile as it seems, to endlessly hammer home the point that those claiming to speak on behalf of “marginalized people” are often doing so in a strikingly superficial and counterproductive manner."
Yes, like putting up a yard sign, proclaiming one's virtue....
I'll confess to having put up one of those "In this house we believe..." yard signs shortly after the 2016 election. It started to bug me pretty quickly and I took it down after a few months. In retrospect, I see it as an expression of not only performative shallow allyship, but also ideological sorting--since I agree with one position on this sign, of course I agree with the rest. Very simplistic.