The hardest truth for me here is that most severe disabilities get the least attention. Left entirely out, of even our own school district's strenuous, all-hands-on-deck equity work, is the education of my Down Syndrome nephew, who most people seem to quietly think is a problem they thought we'd solved. He lost a full year of basic literacy during the Covid shut down, and this year he has had no teacher at all, because who no one wants to work with moderate to severely disabled kids. Using "moderate to severe" to refer to extreme cognitive deficiencies is nowhere in the zeitgeist.
I am a former teacher, I taught kids with moderate to severe - we called them "pervasive" - disabilities. I lasted over a decade, most teachers in that cohort leave the field after less than five years. It's been over a decade since I left, I assume things are even worse now. None of the formers I know left because of the kids, they left because of a complete lack of understanding and support from the larger administration. Which I also assume is much worse now.
My earliest students are in their 30s now, and I still worry about them every day.
Thank you for this, Freddie! I teach a university course on Developmental Psychopathology. For the past several years, students have come into the course having taken courses in the Education Department, already convinced of (brainwashed into?) the disabilities studies paradigm. I am going to pair your article with a scholarly piece arguing for a neurodiversity/disability studies perspective for autism-spectrum disorder. I hope that this will force students to grapple with what they really think about these competing perspectives.
When there's a spectrum it implies a wide variety of states. It's irrational to think that you'd treat someone severely autistic as you would a person who's got some Asperger traits. Sure the person who talks to Harvey the invisible 6ft rabbit but otherwise does all right in life should be treated differently than the person who puts on a ski mask and walks through the mall with a knife talking about killing people because they're zombies.
People tend to make teams. And a team is more effective than an individual, most of the time. So it becomes a "join our team or get sidelined," and then you're expected to follow that team no matter what. There's no morality in it; it's just the same status game that's been played ever since it was Our Noble Hunters vs. Their Evil Poachers.
This doesn't explain why the "team captains" are so stupid though. If we're going to be identity driven and tribal, so be it, but the qualities being selected for in leadership ought to be things like wisdom and reason, not charisma and zealotry. This is an internal problem of judgement - of people within a group elevating or tolerating others to speak for them who are more preachers than problem solvers. That's on the members of the group to address.
I agree. I'm getting very angry about identity politics. I'm feeling prejudice that I never felt before. When Gavin Newsome appointed the new black gay woman Senator I thought, there's an identity appointment. She ticks three boxes. It also bothers me because if he wanted to appoint someone representative of CA he would have chosen an Asian or Mexican, two groups who are close to a majority in the state. Blacks are 6% of the population in CA.
I thought his pick for the vacant Senate seat was a black, gay woman...maybe I was wrong.
I'm not against Newsome. He recently got some significant funding for mental health facilities in CA and is supporting involuntary commitment when a person is a danger to themselves and others.
I agree with much of this but I do have a few points of departure on identity and stigma.
Re identity: "Either way, insisting that you simply are your disability sacrifices your autonomy and right to self-define on the altar of an identity that you didn’t choose. Personally, I’m horrified by the thought of being defined by my mental illness, which for obvious reasons is the part of myself I like the least." While I think you are ultimately right that it isn't conducive to robust mental health to make your disability the center of your identity, it's also obvious to me why someone like you, who had a successful career which was very publicly derailed by it, would want to keep all the non-disability parts of it in the foreground. But it's honestly the case for a lot of people that, at least on paper, their disability is the most interesting thing about them and the only thing that helps them make sense of their own failures in a socially legible way. Not to say this is a great strategy, just that most people are facing a different set of incentives from your own. And under those incentives, clinging fiercely to the disabled identity is sometimes just a waypoint, a path out of the self-loathing that social failure tends to impose. (For my own part, I cannot make sense of much of my own history and experiences except in light of it, and incorporating it as one thing that I am without it being the only thing that I am is work of constant negotiation.)
Re stigma: "A deeply mentally ill person who lives under a bridge has a lot of very real problems, and stigma is not one of them." People are not infrequently abandoned by their friends and families when they develop severe mental illness, which can make the difference between living in a house and under a bridge, or being connected or disconnected from social services. I'm not trying to malign the loved ones of people with SMI in any categorical way, nor suggest that the behavior of people with SMI is in no way implicated in some of those decisions. But we know people get put out of their homes for less, and some people's families are ignorant, immoral, or both. I think you are right to try to shift the late emphasis on stigma, but I nevertheless think it is real and impactful, even in situations where the "real problem" is quite dramatic. And people with lived experience might not all use the term 'stigma' in the same way, but they can certainly tell you about shame, and they're often speaking to the same phenomenon, except they believe it is their fault and they deserve to feel that way. Which actually does suck a lot for them and make their day to day lives worse, but they aren't going to complain about psychological consequences they feel they have 'earned' by being unwell.
Agree with your assessment. I fully buy the medical model of mental illness, and so I believe that it should be treated as non-judgmentally as other illnesses. The stigma can go. I don't see that as a mistake.
I appreciate these thoughtful comments. I agree that stigma is a legitimate problem. I see it a lot in discussions of homelessness - there's a lot of rhetoric by people frustrated with the pervasive visibility of the problem to the effect of, "We should just be rounding them all up and locking them away," or, even more commonly, "It's just drug addiction, they're just tweaking, treating them like they have a disability is coddling them." I would very much call this stigma, and I think the backlash to it feeds into the overbroad progressive opposition to involuntary treatment.
I do take Freddie's point that "stigma" as a focal point for activism to the exclusion of all else is a problem. The counter-rhetoric does have a tiring tendency to focus on how mean and rude and bigoted the stigmatizing language is, instead of trying to refocus the conversation on how to get people out from under bridges and into warmth and safety. But I appreciate your articulation of the shame people dealing with SMI often feel.
I think Freddie has quite a specific definition of 'stigma' and what it entails... I can see that focusing on stigma puts the cart before the horse though. My best friend definitely lost most of his friends when he developed schizophrenia because he posted some very intense, very long posts on social media and his beliefs and was accusatory in his belief that people have joined a fake FB group about him etc. I'm not sure it was sitgma per se that meant that peopel distanced themselves... more a simple lack of knowing what to say. Also, I think it is okay to say that the behaviour was confusing and a bit frightening for some people. Ultimately, having paranoid delusional thoughts and a near-constant voice in his head saying persecutory and scary things is what causes him massive suffering and distress. I believe that the less alienated he feels the less severe these symptoms get, but they would still be difficult for him within a more tolerant and understanding society. [Also, to end on a positive note, his new meds are working pretty damn well and he told me the other day he messaged people he hasn't spoken to in years and got some nice replies back! :D]
Oh, that’s so good to hear! It’s always wonderful when these things end positively.
I also wouldn’t call what you’re describing stigma – when someone’s behavior is strange and erratic and they don’t seem able to communicate with you in a shared reality, it naturally drives people away. The fact that people are responding positively to your friend’s messages points to a lack of stigma against him for his mental illness, and that’s great.
When I think of it in terms of the mentally ill and homeless, I think of the kind of rhetoric that treats people as worthless and incurable. Of course some people will never be fully functional, and the best we can do is mitigate their ability to harm others and themselves, as Freddie has written about before. But there is a “just get them out of my sight“ angle to some people’s view of institutionalization that doesn’t help and that I would call stigmatizing.
In my entirely anecdotal, personal experience with people who are homeless due to severe mental illness their families are desperate to get them housed but are unable to because the afflicted is delusional and refuses treatment, medication, intervention, etc. What is needed is a) the ability to commit people to asylums and b) more beds.
Stigma can be a useful social tool in targeting behaviors over which a person has normal control. It's an injustice for it to target identities or behaviors over which a person does not have control.
Thank you for articulating so much, so succinctly. My thoughts about this are much more disorganized and it was very helpful. It can be overwhelming to try to organize all of the necessary information.
Jordan Neely is the reason I started investigating these issues. I have my own disability and opinions, but that tragedy really got my attention. People were outraged until his history became clear, and then they abandoned him and the rest of those who suffer, as they always do.
Things need to change, and quickly. This system we have now is failing everybody catastrophically. It is not accurate for those with psychosis disorders to be folded into the same group as people who can't concentrate and have a hard time in school. Real problems? Yes, and I do get it. But, meanwhile, the people like me are 16X more likely to be killed by police. I'd just like people to think about that more, and then push for answers and solutions.
I agree with this article completely, even though my daughter is disabled (she has a rare form of congenital muscular dystrophy.) So you might expect that I would be all “rah rah disability studies,” but in fact in my experience Freddie is correct that the ideas put forth by the online disability community do more harm than good.
Life is not always easy for my daughter, and it is so tempting to leap in and fix everything for her, but in fact she takes pride in being able to handle challenges herself. For example, she just got her college PE requirement waived, which required submitting the results of genetic testing, contacting her former pediatrician to get him to write a letter for her, and pestering the disabilities office until they finally sent their decision--all with no help from us.
It was good practice for her, because she is likely to encounter similar bureaucratic tangles throughout her life. (And I suspect that one reason it was so difficult for her to get excused from the requirement is that the disabilities office likely gets several requests every year from people who are not genuinely disabled.) Resilience is an important quality to nurture in all our kids, but it’s especially important for those who are disabled, because they will need all the resilience they can get!
The saddest aspect of all this is that there is a place for disability studies, and for using the input from disabled people to decide on reasonable accommodations. My daughter serves on the student disabilities committee at her college, and they are working to improve conditions for disabled students on campus. Right now, amazingly, the office of the administrator in charge of students with disabilities is up three flights of stairs, with no elevator. The committee is campaigning to get the office moved to the ground floor or to a place with elevator service so that disabled students can actually get to the office. This is the kind of project I think disabilities studies ought to be engaging in more often--disabled people can use their insights, perspectives, and unique strengths to make the world a better place.
I know I sound like a lot of the commenters here, but thanks for writing this. I have a non-verbal autistic son (7 years old), and all this really spoke to me.
I consider ourselves lucky that he's been "put in the system," by our state in a manner so that if anything were to happen to me and his mom, that there is a program to identify him and understand his needs / care are not something to be left to his own devices. I guess I just have to hope that our states laws / programs / funding won't ever be changed in a way to affect that in a bad way.
Yeah, I have a friend with an autistic brother and the government in TN through a nonprofit paid for him to have a remarkable sitter who was pretty much the only non-family to be able to calm him (he was an older pothead and not much fazed him). I know his parents had to fight for those resources and I’d hate for the disability ‘rights’ people to have that taken away.
Also when it comes to testing accommodations, how about places stop relying on timed tests? They’re shitty.
I've got to dissent on the subject of timed tests. With the caveats that 1) you may not be talking about ADHD, 2) ADHD has many different manifestations and 3) I'm speaking only for myself, "accommodations" that give extra or unlimited time are the devil.
Why do you say that? Tests with not enough time are the devil. You shouldn’t have to rush through an exam. It’s bullshit that some kids get accommodations and others don’t bc of working the system, but the solution is leisurely timed or untimed tests such that accommodations are unnecessary
I say that because deadlines are the only way I can get anything done (and my daughter, and many other people that have ADHD). When there's no deadline, there's no urgency. I've structured my life around this, creating artificial deadlines for things that I know are important, but for which I lack motivation.
I don't think everyone should have to operate like this — it sounds like you don't want to, for example — just that timed tests are not shitty for everyone; for some of us, they're a critical tool.
I think there might be a difference between traditional exams and projects. Extra time on a traditional exam may give an opportunity to weed out stupid mistakes and quality check. I only it wasn't too boring. With projects procrastinating and time blindness will probably cancel out any extra time granted
I might be misreading this, but aren’t most tests timed? Are there tests that have no deadlines, as in, get this done this month? Are we at a point where we can’t actually take tests with a deadline?
If someone had me take a test that was untimed when I was in school, most likely I'd sit there, overthink, daydream and get distracted until I got so hungry I couldn't focus anymore. I know this because this is what regularly happens to me now when there's important tasks I sit down to do that don't really have a close deadline.
I'm with you on that. I suspect I have some form of ADHD, although it could just be a collection of personality traits that make me impatient, decisive, and terrible with details or long drawn out processes. I'm a champion test taker--get in, show what you know, get out. I'm terrible with projects and with having to keep track of repetitive day to day tasks --as a student I could not be bothered to do or turn in my homework, or keep up my reading log. I always did the reading and always showed up well on the test, unless it was math where practicing by doing problem sets was critical.
I wonder if I were a kid today whether I'd be diagnosed with ADHD and given "accomodations." The accommodation I needed as a kid wasn't extra time or coddling--it was having somebody insist that I do my math homework before I did anything else after school. Now as an adult, I am aware that I actively avoid repetitive tasks like tracking my work hours or keeping up with invoicing clients. I set aside a day each week to do these things, but I envy those who seem to use their time trackers without having to set a phone alarm to make them do so!
Same here, I find it pretty funny that the only ADHD accommodation anyone seems to get is one that would have been perfectly useless to me as I always finished near-to-first. Now, someone to somehow make me check my work...
ETA now that I think about it, some kids also get extra time to complete assignments, which would have been disastrous to me--like you say, I'm lost without a deadline.
I have a later in life ADHD diagnosis and I too performed really well on tests, except those pesky take home tests I got in college because the expectations were that if I had more time I would be able to write much much more, wrong.
The accommodations that would have helped me most in school would be to just allow me to do the things with my hands I need to do in order to focus. And also to help me learn how to organize my physical belongings and how to follow a schedule.
The part that disturbs me the most is the all-positive mentality. My brother has autism, and every show in the early 00s was about autistic people having secret abilities and powers. The public imagination of a good and just life can't factor him in without seeing through time to win the lottery.
Related, I recently learned about "twice exceptional" and "thrice exceptional" and it made me really question how the concept of being "gifted" gets leveraged in the contemporary discourse of parents, schools, and disability.
This really strikes a chord with me too as an older person with admittedly mild autism and depression. I’m like one of the lucky ones who could play charades and set it up as a quirk of my personality now at 42 outwardly successful and having found a whole slew of coping strategies.
There was nothing at all quirky and pleasant about my late development of executive function and only developing anything like social skills in my 30s through voraciously reading self help books.
That anyone even compares this to the much more serious forms of autism is weird to me and while I get why Asperger was a terrible namesake both historically and sound wise having a separate diagnosis made more sense to me.
As a 40 year old now looking into adult autism diagnosis, my "neuroatypicality" has certainly NEVER been a benefit. Getting into a few gifted classes and being called "smart" by people has been NO fucking use when I wind up dropping out of school due to not being able to take the social pressure, or get regularly marginalized in jobs by people who can play the make-like game better. If there was a cure for autism, I'd chug it.
There's nothing fundamentally wrong with the idea of Disability Studies.
It's "celebrating, flaunting and cultivating one's Sacred Victim Status" that I have "issues" with.
Anyway, TikTok mental illness person must experience some kind of stigma, since she's waiting until the third date to share. Most such types that I know wear their non-neurotypical status/victim/whatever you call it thingee loud and proud.
A bit OT but it's not sage or practical to wait to disclose something that's a potential dealbreaker for them and a potential screening tool for you (how they take it can tell you a lot). It's one thing to bang it like a drum, but it's another to be frank and open, and I hate to think that some people are retreating back into their closets for fear of being misclassed as some kinda frivolous person with colorful hair.
I appreciate your focus on mental illness, but even physical disabilities have been minimized by those who favor the 'disability paradigm' which insists that 'differently abled' is just great. No, it's not. I have serious primary lymphedema in both legs. I have no system in my legs to deliver white blood cells to the source of an infection. This lack is likely to cause my death. Many physical - and mental - disabilities cause great hardship and shorten life.
Thank you for saying this, and I am so sorry you have to deal with these challenges. It’s the same for my daughter. She has never been able to run, dance, ride a bike, or walk up the stairs. She gets wiped out after walking just a few blocks. I HATE the expression “differently abled.” It’s not a different ability. It’s a disability, and we might as well admit it.
Having been teaching at the university level for the last five years, I can definitely say that there are a suspiciously large number of students who claim to have some combination of ADHD, autism, long COVID, and various other mental illnesses that both grant them various accommodations and acquit them of responsibility for any social or behavioral faux pas. When I began, I took the attitude that the accommodations office knew more about these issues than I did, so I should trust their judgment, but I find it increasingly difficult to do so in many cases. (Even so, there are plenty of students who claim to have these illnesses, won’t visit the accommodations office, but demand accommodations anyway).
Side note: I’ve taught at three different universities since finishing grad school: two public universities and one (very elite) private one. Any guesses which one handed out by far the largest number of accommodations, in spite of having the smallest class sizes?
Consider the incentives for a university: if they deny a reasonable accommodations request, they risk bad publicity and even a lawsuit. If they grant them as a matter of habit, they're only facing a further reduction of academic rigor. These are self-defensive institutions; the choice they'll make is obvious.
Is there robust data demonstrating that accommodations like “extra time” on exams or similar has measurable outcomes on students’ scores semester-on-semester? As an English prof, I don’t see much in the way of noticeable improvement from baseline when I give essay extensions or push deadlines for a whole class. I don’t give traditional exams as often, but my experience in undergrad on content-based exams was that I either knew the material or I didn’t, and squinting at an exam for an extra half-hour was a form of magical thinking.
I can't remember this ever happening in undergrad, but in high school there was at least one final examon which I simply ran out of time. I probably wasn't the only person to do so. But having an extra half hour would have at least let me take a stab at each question/essay, even if I was hopelessly off.
There is //no way// I would have got my GCSE results without extra time or a laptop. It's funny because I'm sure having diagnosed OCD helped secure my accomodations... but really my awkwardly slow writing hasn't been chalked down to a specific diagnosis... vagely dyspraxic idk.
Personally I think timed exams for several subjects are daft though - but I accept that coursework is increasingly easy to cheat.
YMMV depending on how your brain works, but for my (undiagnosed in undergrad) ADHD brain, I don't think broad-based extensions or more time on exams are very helpful accomodations. My thing has always been "inability to motivate myself to do anything without the pressure of a deadline." So for me, extensions in big essays just enabled further procrastination, as did lenient "2% off per day" policies. My science classes, where I had to hand in weekly labs and it was either in or it was a zero, worked better for me. It wasn't always my best work, but it was never a gigantic task and often I just needed to hand something in.
The workplace accomodations I have developed with my boss are to have more "small deadlines" and check-ins. So for the big research report I'm writing, instead of getting a month to hand in a polished copy, it gets broken up into chunks. I have a week to hand in a rough outline with my ideas and research, a week to have mostly finished the research, a week to have written it all into something more coherent, and then a week to have the refined copy. And we have little weekly check-ins along the way for her to give feedback and me to ask questions. I still leave things to the last minute, but leaving 25% of a project to the last minute is better than leaving 100% of the project to the last minute.
The "frequent check ins" is also why I aced high school math (your homework was always taken up the next day, so I was always on top of things, there were frequent quizzes) versus nearly failing first year calc (there are no immediate consequences to not doing assigned weekly problem sets, it always seemed like there was more time til the midterm arrived and I had to learn two months of calculus in one evening).
That being said, I had a friend in undergrad with...some sort of disability that I can't remember anymore, and he needed a bit more time and a separate room to focus on exams. Seemed to work for him because he had an awesome GPA, ended up doing a PhD in biochem, and is now doing cool stuff with drug materials. He never made a big thing about it, and I only knew because we'd walk to exams together and then he'd split off to go to his special room.
I struggled a lot with deadlines and attendance in college. Some of it was serious mental illness (I have bipolar 1 like Freddie and didn't go a full year without an episode between graduating high school and graduating college), some was ADHD, and a fair bit was just learned bad habits. I got on the right meds my senior year and then the 9-5 office environment has been the best thing for my focus and productivity. I have a set time to start work, daily check ins on progress (standup), a specific environment only for work, a time to sign off every evening, and genuine accountability with teeth. I basically never procrastinate anymore and I'm way less stressed overall. In college I was simultaneously procrastinating, missing class, feeling guilty about it, and never able to put my assignments out of my mind and relax. I always knew there was something I ought to be working on that I was forgetting to do.
If accommodation like these are allowed without very rigorous screening, they'll inevitably be abused.
I hate this stuff, but if half of my kid's class has extended-test accommodations, I have to get it for my kid too, or he's at an unfair disadvantage.
I suspect the same dynamic exists at the school level - if half of the schools in the area allow this, then the rest would be unfairly disadvantaged if they didn't also allow it.
Ultimately, it needs to be stopped at the state or federal level.
"Stigma is nobody’s biggest problem" deserves to be ubiquitous.
I dream of living in a society in which people trip over themselves to say this first every time someone raises the specter of stigma to obstruct treatment or even just "problematize" serious discussion about disability.
(Which is not to say stigma doesn't exist or isn't painful.)
I think you make a great point about helicopter parents and the rise of disability diagnoses. I was diagnosed with a learning disability as a teenager, because my parents were worried when I brought home a bad report card. They brought me to a “specialist” who gave me a diagnosis that stated I needed extra time on tests. I found the whole thing super embarrassing, I knew I wasn’t disabled, and I felt like I was taking advantage of something I didn’t deserve), and stopped using the extra time, started studying harder instead of goofing off in class (the real reason why my marks dropped) and have continued to live my life normally ever since, despite apparently being “disabled”.
Anyway, the time I did use my extra time on an exam, I noticed 90% of my classmates in the room were from similar backgrounds: kids with upper middle class, successful parents. Im sure some of them had legit disabilities, but I did get the sense that a lot of them were there because they had successful parents who weren’t going to have an academic underachieving child, and were willing to pull out the stops to make that happen.
Hard for those folks to admit that maybe their kid just isn't that bright--or that they don't know how to teach them good study habits. It's a lot easier for the parent to blame a learning disability.
Per Freddie's first book: If you presuppose that every "normal" person should be capable of achieving top-rank academic success, then anything less than that comes to be seen as a "disability." It's the pathologization of mediocrity.
I think "blame the parents" is as lazy and unhelpful for parents as is low-bar-to-entry learning disability diagnoses are to kids.
Our son was bright enough to be in the 95%+ percentile for reading and math on standardized tests through junior high school yet regularly faced dismal grades for problems as banal as not writing his name on assignments and as apparently willful as just not doing some assignments.
Many of the parents his peers report similar experiences -- kids unmotivated by school work and apparently unmotivated by loss of privileges. One year when our son's grades cratered without explanation we stripped him of his privileges until his grades went up, and in return we got the same dismal grades AND an angry, lethargic family member to boot.
Of course we've run the gauntlet of coaches, credentialed professionals, medical experts and, yes, unhelpful diagnoses. You get ADD and depression diagnosis so easily its almost like a package deal, but they don't see satisfying and the standard treatments -- pills and therapy -- don't address the problem.
“ getting help for your mental problems”
Anosognosia - a neuropsychiatric condition in which one is in denial--unconsciously--and unaware of an apparent disability or deficit.
One of the symptoms of the disease is a fundamental belief that they aren’t sick. That’s why it’s so hard to get them into treatment.
The hardest truth for me here is that most severe disabilities get the least attention. Left entirely out, of even our own school district's strenuous, all-hands-on-deck equity work, is the education of my Down Syndrome nephew, who most people seem to quietly think is a problem they thought we'd solved. He lost a full year of basic literacy during the Covid shut down, and this year he has had no teacher at all, because who no one wants to work with moderate to severely disabled kids. Using "moderate to severe" to refer to extreme cognitive deficiencies is nowhere in the zeitgeist.
I am a former teacher, I taught kids with moderate to severe - we called them "pervasive" - disabilities. I lasted over a decade, most teachers in that cohort leave the field after less than five years. It's been over a decade since I left, I assume things are even worse now. None of the formers I know left because of the kids, they left because of a complete lack of understanding and support from the larger administration. Which I also assume is much worse now.
My earliest students are in their 30s now, and I still worry about them every day.
Thank you for this, Freddie! I teach a university course on Developmental Psychopathology. For the past several years, students have come into the course having taken courses in the Education Department, already convinced of (brainwashed into?) the disabilities studies paradigm. I am going to pair your article with a scholarly piece arguing for a neurodiversity/disability studies perspective for autism-spectrum disorder. I hope that this will force students to grapple with what they really think about these competing perspectives.
When there's a spectrum it implies a wide variety of states. It's irrational to think that you'd treat someone severely autistic as you would a person who's got some Asperger traits. Sure the person who talks to Harvey the invisible 6ft rabbit but otherwise does all right in life should be treated differently than the person who puts on a ski mask and walks through the mall with a knife talking about killing people because they're zombies.
I appreciate Freddie's essays about this topic, a topic I know little about.
But I'm left again with the impression of yet another area of life made worse by the ubiquity of Identity Politics.
It's the only game in town, I guess. Play it or lose by default.
Romanticism is perhaps the Ultimate Luxury Belief.
People tend to make teams. And a team is more effective than an individual, most of the time. So it becomes a "join our team or get sidelined," and then you're expected to follow that team no matter what. There's no morality in it; it's just the same status game that's been played ever since it was Our Noble Hunters vs. Their Evil Poachers.
This doesn't explain why the "team captains" are so stupid though. If we're going to be identity driven and tribal, so be it, but the qualities being selected for in leadership ought to be things like wisdom and reason, not charisma and zealotry. This is an internal problem of judgement - of people within a group elevating or tolerating others to speak for them who are more preachers than problem solvers. That's on the members of the group to address.
I agree. I'm getting very angry about identity politics. I'm feeling prejudice that I never felt before. When Gavin Newsome appointed the new black gay woman Senator I thought, there's an identity appointment. She ticks three boxes. It also bothers me because if he wanted to appoint someone representative of CA he would have chosen an Asian or Mexican, two groups who are close to a majority in the state. Blacks are 6% of the population in CA.
It bothers me to think this way.
I'm not defending Gavin Newsom in the slightest, but Alex Padilla is Latino.
I thought his pick for the vacant Senate seat was a black, gay woman...maybe I was wrong.
I'm not against Newsome. He recently got some significant funding for mental health facilities in CA and is supporting involuntary commitment when a person is a danger to themselves and others.
I agree with much of this but I do have a few points of departure on identity and stigma.
Re identity: "Either way, insisting that you simply are your disability sacrifices your autonomy and right to self-define on the altar of an identity that you didn’t choose. Personally, I’m horrified by the thought of being defined by my mental illness, which for obvious reasons is the part of myself I like the least." While I think you are ultimately right that it isn't conducive to robust mental health to make your disability the center of your identity, it's also obvious to me why someone like you, who had a successful career which was very publicly derailed by it, would want to keep all the non-disability parts of it in the foreground. But it's honestly the case for a lot of people that, at least on paper, their disability is the most interesting thing about them and the only thing that helps them make sense of their own failures in a socially legible way. Not to say this is a great strategy, just that most people are facing a different set of incentives from your own. And under those incentives, clinging fiercely to the disabled identity is sometimes just a waypoint, a path out of the self-loathing that social failure tends to impose. (For my own part, I cannot make sense of much of my own history and experiences except in light of it, and incorporating it as one thing that I am without it being the only thing that I am is work of constant negotiation.)
Re stigma: "A deeply mentally ill person who lives under a bridge has a lot of very real problems, and stigma is not one of them." People are not infrequently abandoned by their friends and families when they develop severe mental illness, which can make the difference between living in a house and under a bridge, or being connected or disconnected from social services. I'm not trying to malign the loved ones of people with SMI in any categorical way, nor suggest that the behavior of people with SMI is in no way implicated in some of those decisions. But we know people get put out of their homes for less, and some people's families are ignorant, immoral, or both. I think you are right to try to shift the late emphasis on stigma, but I nevertheless think it is real and impactful, even in situations where the "real problem" is quite dramatic. And people with lived experience might not all use the term 'stigma' in the same way, but they can certainly tell you about shame, and they're often speaking to the same phenomenon, except they believe it is their fault and they deserve to feel that way. Which actually does suck a lot for them and make their day to day lives worse, but they aren't going to complain about psychological consequences they feel they have 'earned' by being unwell.
Agree with your assessment. I fully buy the medical model of mental illness, and so I believe that it should be treated as non-judgmentally as other illnesses. The stigma can go. I don't see that as a mistake.
I appreciate these thoughtful comments. I agree that stigma is a legitimate problem. I see it a lot in discussions of homelessness - there's a lot of rhetoric by people frustrated with the pervasive visibility of the problem to the effect of, "We should just be rounding them all up and locking them away," or, even more commonly, "It's just drug addiction, they're just tweaking, treating them like they have a disability is coddling them." I would very much call this stigma, and I think the backlash to it feeds into the overbroad progressive opposition to involuntary treatment.
I do take Freddie's point that "stigma" as a focal point for activism to the exclusion of all else is a problem. The counter-rhetoric does have a tiring tendency to focus on how mean and rude and bigoted the stigmatizing language is, instead of trying to refocus the conversation on how to get people out from under bridges and into warmth and safety. But I appreciate your articulation of the shame people dealing with SMI often feel.
I think Freddie has quite a specific definition of 'stigma' and what it entails... I can see that focusing on stigma puts the cart before the horse though. My best friend definitely lost most of his friends when he developed schizophrenia because he posted some very intense, very long posts on social media and his beliefs and was accusatory in his belief that people have joined a fake FB group about him etc. I'm not sure it was sitgma per se that meant that peopel distanced themselves... more a simple lack of knowing what to say. Also, I think it is okay to say that the behaviour was confusing and a bit frightening for some people. Ultimately, having paranoid delusional thoughts and a near-constant voice in his head saying persecutory and scary things is what causes him massive suffering and distress. I believe that the less alienated he feels the less severe these symptoms get, but they would still be difficult for him within a more tolerant and understanding society. [Also, to end on a positive note, his new meds are working pretty damn well and he told me the other day he messaged people he hasn't spoken to in years and got some nice replies back! :D]
Oh, that’s so good to hear! It’s always wonderful when these things end positively.
I also wouldn’t call what you’re describing stigma – when someone’s behavior is strange and erratic and they don’t seem able to communicate with you in a shared reality, it naturally drives people away. The fact that people are responding positively to your friend’s messages points to a lack of stigma against him for his mental illness, and that’s great.
When I think of it in terms of the mentally ill and homeless, I think of the kind of rhetoric that treats people as worthless and incurable. Of course some people will never be fully functional, and the best we can do is mitigate their ability to harm others and themselves, as Freddie has written about before. But there is a “just get them out of my sight“ angle to some people’s view of institutionalization that doesn’t help and that I would call stigmatizing.
In my entirely anecdotal, personal experience with people who are homeless due to severe mental illness their families are desperate to get them housed but are unable to because the afflicted is delusional and refuses treatment, medication, intervention, etc. What is needed is a) the ability to commit people to asylums and b) more beds.
Stigma can be a useful social tool in targeting behaviors over which a person has normal control. It's an injustice for it to target identities or behaviors over which a person does not have control.
Thank you for articulating so much, so succinctly. My thoughts about this are much more disorganized and it was very helpful. It can be overwhelming to try to organize all of the necessary information.
Jordan Neely is the reason I started investigating these issues. I have my own disability and opinions, but that tragedy really got my attention. People were outraged until his history became clear, and then they abandoned him and the rest of those who suffer, as they always do.
Things need to change, and quickly. This system we have now is failing everybody catastrophically. It is not accurate for those with psychosis disorders to be folded into the same group as people who can't concentrate and have a hard time in school. Real problems? Yes, and I do get it. But, meanwhile, the people like me are 16X more likely to be killed by police. I'd just like people to think about that more, and then push for answers and solutions.
Treatment, not death.
I agree with this article completely, even though my daughter is disabled (she has a rare form of congenital muscular dystrophy.) So you might expect that I would be all “rah rah disability studies,” but in fact in my experience Freddie is correct that the ideas put forth by the online disability community do more harm than good.
Life is not always easy for my daughter, and it is so tempting to leap in and fix everything for her, but in fact she takes pride in being able to handle challenges herself. For example, she just got her college PE requirement waived, which required submitting the results of genetic testing, contacting her former pediatrician to get him to write a letter for her, and pestering the disabilities office until they finally sent their decision--all with no help from us.
It was good practice for her, because she is likely to encounter similar bureaucratic tangles throughout her life. (And I suspect that one reason it was so difficult for her to get excused from the requirement is that the disabilities office likely gets several requests every year from people who are not genuinely disabled.) Resilience is an important quality to nurture in all our kids, but it’s especially important for those who are disabled, because they will need all the resilience they can get!
The saddest aspect of all this is that there is a place for disability studies, and for using the input from disabled people to decide on reasonable accommodations. My daughter serves on the student disabilities committee at her college, and they are working to improve conditions for disabled students on campus. Right now, amazingly, the office of the administrator in charge of students with disabilities is up three flights of stairs, with no elevator. The committee is campaigning to get the office moved to the ground floor or to a place with elevator service so that disabled students can actually get to the office. This is the kind of project I think disabilities studies ought to be engaging in more often--disabled people can use their insights, perspectives, and unique strengths to make the world a better place.
Thank you for sharing, Mari, and all the best to you and your daughter.
Oh, thank you so much! Sometimes the internet can be a pretty nice place!
Excellent summary of some of your most important arguments. Would love a whole book on this subject
Yeah, count me also among the voices here who are hoping for this to be the topic of your next book!
I know I sound like a lot of the commenters here, but thanks for writing this. I have a non-verbal autistic son (7 years old), and all this really spoke to me.
I consider ourselves lucky that he's been "put in the system," by our state in a manner so that if anything were to happen to me and his mom, that there is a program to identify him and understand his needs / care are not something to be left to his own devices. I guess I just have to hope that our states laws / programs / funding won't ever be changed in a way to affect that in a bad way.
Yeah, I have a friend with an autistic brother and the government in TN through a nonprofit paid for him to have a remarkable sitter who was pretty much the only non-family to be able to calm him (he was an older pothead and not much fazed him). I know his parents had to fight for those resources and I’d hate for the disability ‘rights’ people to have that taken away.
Also when it comes to testing accommodations, how about places stop relying on timed tests? They’re shitty.
I've got to dissent on the subject of timed tests. With the caveats that 1) you may not be talking about ADHD, 2) ADHD has many different manifestations and 3) I'm speaking only for myself, "accommodations" that give extra or unlimited time are the devil.
Why do you say that? Tests with not enough time are the devil. You shouldn’t have to rush through an exam. It’s bullshit that some kids get accommodations and others don’t bc of working the system, but the solution is leisurely timed or untimed tests such that accommodations are unnecessary
I say that because deadlines are the only way I can get anything done (and my daughter, and many other people that have ADHD). When there's no deadline, there's no urgency. I've structured my life around this, creating artificial deadlines for things that I know are important, but for which I lack motivation.
I don't think everyone should have to operate like this — it sounds like you don't want to, for example — just that timed tests are not shitty for everyone; for some of us, they're a critical tool.
I think there might be a difference between traditional exams and projects. Extra time on a traditional exam may give an opportunity to weed out stupid mistakes and quality check. I only it wasn't too boring. With projects procrastinating and time blindness will probably cancel out any extra time granted
I might be misreading this, but aren’t most tests timed? Are there tests that have no deadlines, as in, get this done this month? Are we at a point where we can’t actually take tests with a deadline?
If someone had me take a test that was untimed when I was in school, most likely I'd sit there, overthink, daydream and get distracted until I got so hungry I couldn't focus anymore. I know this because this is what regularly happens to me now when there's important tasks I sit down to do that don't really have a close deadline.
I'm with you on that. I suspect I have some form of ADHD, although it could just be a collection of personality traits that make me impatient, decisive, and terrible with details or long drawn out processes. I'm a champion test taker--get in, show what you know, get out. I'm terrible with projects and with having to keep track of repetitive day to day tasks --as a student I could not be bothered to do or turn in my homework, or keep up my reading log. I always did the reading and always showed up well on the test, unless it was math where practicing by doing problem sets was critical.
I wonder if I were a kid today whether I'd be diagnosed with ADHD and given "accomodations." The accommodation I needed as a kid wasn't extra time or coddling--it was having somebody insist that I do my math homework before I did anything else after school. Now as an adult, I am aware that I actively avoid repetitive tasks like tracking my work hours or keeping up with invoicing clients. I set aside a day each week to do these things, but I envy those who seem to use their time trackers without having to set a phone alarm to make them do so!
Same here, I find it pretty funny that the only ADHD accommodation anyone seems to get is one that would have been perfectly useless to me as I always finished near-to-first. Now, someone to somehow make me check my work...
ETA now that I think about it, some kids also get extra time to complete assignments, which would have been disastrous to me--like you say, I'm lost without a deadline.
Hahahaha! Exactly.
I have a later in life ADHD diagnosis and I too performed really well on tests, except those pesky take home tests I got in college because the expectations were that if I had more time I would be able to write much much more, wrong.
The accommodations that would have helped me most in school would be to just allow me to do the things with my hands I need to do in order to focus. And also to help me learn how to organize my physical belongings and how to follow a schedule.
The part that disturbs me the most is the all-positive mentality. My brother has autism, and every show in the early 00s was about autistic people having secret abilities and powers. The public imagination of a good and just life can't factor him in without seeing through time to win the lottery.
Related, I recently learned about "twice exceptional" and "thrice exceptional" and it made me really question how the concept of being "gifted" gets leveraged in the contemporary discourse of parents, schools, and disability.
This really strikes a chord with me too as an older person with admittedly mild autism and depression. I’m like one of the lucky ones who could play charades and set it up as a quirk of my personality now at 42 outwardly successful and having found a whole slew of coping strategies.
There was nothing at all quirky and pleasant about my late development of executive function and only developing anything like social skills in my 30s through voraciously reading self help books.
That anyone even compares this to the much more serious forms of autism is weird to me and while I get why Asperger was a terrible namesake both historically and sound wise having a separate diagnosis made more sense to me.
As a 40 year old now looking into adult autism diagnosis, my "neuroatypicality" has certainly NEVER been a benefit. Getting into a few gifted classes and being called "smart" by people has been NO fucking use when I wind up dropping out of school due to not being able to take the social pressure, or get regularly marginalized in jobs by people who can play the make-like game better. If there was a cure for autism, I'd chug it.
There's nothing fundamentally wrong with the idea of Disability Studies.
It's "celebrating, flaunting and cultivating one's Sacred Victim Status" that I have "issues" with.
Anyway, TikTok mental illness person must experience some kind of stigma, since she's waiting until the third date to share. Most such types that I know wear their non-neurotypical status/victim/whatever you call it thingee loud and proud.
A bit OT but it's not sage or practical to wait to disclose something that's a potential dealbreaker for them and a potential screening tool for you (how they take it can tell you a lot). It's one thing to bang it like a drum, but it's another to be frank and open, and I hate to think that some people are retreating back into their closets for fear of being misclassed as some kinda frivolous person with colorful hair.
I appreciate your focus on mental illness, but even physical disabilities have been minimized by those who favor the 'disability paradigm' which insists that 'differently abled' is just great. No, it's not. I have serious primary lymphedema in both legs. I have no system in my legs to deliver white blood cells to the source of an infection. This lack is likely to cause my death. Many physical - and mental - disabilities cause great hardship and shorten life.
Thank you for saying this, and I am so sorry you have to deal with these challenges. It’s the same for my daughter. She has never been able to run, dance, ride a bike, or walk up the stairs. She gets wiped out after walking just a few blocks. I HATE the expression “differently abled.” It’s not a different ability. It’s a disability, and we might as well admit it.
Having been teaching at the university level for the last five years, I can definitely say that there are a suspiciously large number of students who claim to have some combination of ADHD, autism, long COVID, and various other mental illnesses that both grant them various accommodations and acquit them of responsibility for any social or behavioral faux pas. When I began, I took the attitude that the accommodations office knew more about these issues than I did, so I should trust their judgment, but I find it increasingly difficult to do so in many cases. (Even so, there are plenty of students who claim to have these illnesses, won’t visit the accommodations office, but demand accommodations anyway).
Side note: I’ve taught at three different universities since finishing grad school: two public universities and one (very elite) private one. Any guesses which one handed out by far the largest number of accommodations, in spite of having the smallest class sizes?
Consider the incentives for a university: if they deny a reasonable accommodations request, they risk bad publicity and even a lawsuit. If they grant them as a matter of habit, they're only facing a further reduction of academic rigor. These are self-defensive institutions; the choice they'll make is obvious.
Is there robust data demonstrating that accommodations like “extra time” on exams or similar has measurable outcomes on students’ scores semester-on-semester? As an English prof, I don’t see much in the way of noticeable improvement from baseline when I give essay extensions or push deadlines for a whole class. I don’t give traditional exams as often, but my experience in undergrad on content-based exams was that I either knew the material or I didn’t, and squinting at an exam for an extra half-hour was a form of magical thinking.
I can't remember this ever happening in undergrad, but in high school there was at least one final examon which I simply ran out of time. I probably wasn't the only person to do so. But having an extra half hour would have at least let me take a stab at each question/essay, even if I was hopelessly off.
There is //no way// I would have got my GCSE results without extra time or a laptop. It's funny because I'm sure having diagnosed OCD helped secure my accomodations... but really my awkwardly slow writing hasn't been chalked down to a specific diagnosis... vagely dyspraxic idk.
Personally I think timed exams for several subjects are daft though - but I accept that coursework is increasingly easy to cheat.
YMMV depending on how your brain works, but for my (undiagnosed in undergrad) ADHD brain, I don't think broad-based extensions or more time on exams are very helpful accomodations. My thing has always been "inability to motivate myself to do anything without the pressure of a deadline." So for me, extensions in big essays just enabled further procrastination, as did lenient "2% off per day" policies. My science classes, where I had to hand in weekly labs and it was either in or it was a zero, worked better for me. It wasn't always my best work, but it was never a gigantic task and often I just needed to hand something in.
The workplace accomodations I have developed with my boss are to have more "small deadlines" and check-ins. So for the big research report I'm writing, instead of getting a month to hand in a polished copy, it gets broken up into chunks. I have a week to hand in a rough outline with my ideas and research, a week to have mostly finished the research, a week to have written it all into something more coherent, and then a week to have the refined copy. And we have little weekly check-ins along the way for her to give feedback and me to ask questions. I still leave things to the last minute, but leaving 25% of a project to the last minute is better than leaving 100% of the project to the last minute.
The "frequent check ins" is also why I aced high school math (your homework was always taken up the next day, so I was always on top of things, there were frequent quizzes) versus nearly failing first year calc (there are no immediate consequences to not doing assigned weekly problem sets, it always seemed like there was more time til the midterm arrived and I had to learn two months of calculus in one evening).
That being said, I had a friend in undergrad with...some sort of disability that I can't remember anymore, and he needed a bit more time and a separate room to focus on exams. Seemed to work for him because he had an awesome GPA, ended up doing a PhD in biochem, and is now doing cool stuff with drug materials. He never made a big thing about it, and I only knew because we'd walk to exams together and then he'd split off to go to his special room.
I struggled a lot with deadlines and attendance in college. Some of it was serious mental illness (I have bipolar 1 like Freddie and didn't go a full year without an episode between graduating high school and graduating college), some was ADHD, and a fair bit was just learned bad habits. I got on the right meds my senior year and then the 9-5 office environment has been the best thing for my focus and productivity. I have a set time to start work, daily check ins on progress (standup), a specific environment only for work, a time to sign off every evening, and genuine accountability with teeth. I basically never procrastinate anymore and I'm way less stressed overall. In college I was simultaneously procrastinating, missing class, feeling guilty about it, and never able to put my assignments out of my mind and relax. I always knew there was something I ought to be working on that I was forgetting to do.
If accommodation like these are allowed without very rigorous screening, they'll inevitably be abused.
I hate this stuff, but if half of my kid's class has extended-test accommodations, I have to get it for my kid too, or he's at an unfair disadvantage.
I suspect the same dynamic exists at the school level - if half of the schools in the area allow this, then the rest would be unfairly disadvantaged if they didn't also allow it.
Ultimately, it needs to be stopped at the state or federal level.
People respond to economic incentives before anything else.
"Stigma is nobody’s biggest problem" deserves to be ubiquitous.
I dream of living in a society in which people trip over themselves to say this first every time someone raises the specter of stigma to obstruct treatment or even just "problematize" serious discussion about disability.
(Which is not to say stigma doesn't exist or isn't painful.)
I think you make a great point about helicopter parents and the rise of disability diagnoses. I was diagnosed with a learning disability as a teenager, because my parents were worried when I brought home a bad report card. They brought me to a “specialist” who gave me a diagnosis that stated I needed extra time on tests. I found the whole thing super embarrassing, I knew I wasn’t disabled, and I felt like I was taking advantage of something I didn’t deserve), and stopped using the extra time, started studying harder instead of goofing off in class (the real reason why my marks dropped) and have continued to live my life normally ever since, despite apparently being “disabled”.
Anyway, the time I did use my extra time on an exam, I noticed 90% of my classmates in the room were from similar backgrounds: kids with upper middle class, successful parents. Im sure some of them had legit disabilities, but I did get the sense that a lot of them were there because they had successful parents who weren’t going to have an academic underachieving child, and were willing to pull out the stops to make that happen.
Hard for those folks to admit that maybe their kid just isn't that bright--or that they don't know how to teach them good study habits. It's a lot easier for the parent to blame a learning disability.
Per Freddie's first book: If you presuppose that every "normal" person should be capable of achieving top-rank academic success, then anything less than that comes to be seen as a "disability." It's the pathologization of mediocrity.
I think "blame the parents" is as lazy and unhelpful for parents as is low-bar-to-entry learning disability diagnoses are to kids.
Our son was bright enough to be in the 95%+ percentile for reading and math on standardized tests through junior high school yet regularly faced dismal grades for problems as banal as not writing his name on assignments and as apparently willful as just not doing some assignments.
Many of the parents his peers report similar experiences -- kids unmotivated by school work and apparently unmotivated by loss of privileges. One year when our son's grades cratered without explanation we stripped him of his privileges until his grades went up, and in return we got the same dismal grades AND an angry, lethargic family member to boot.
Of course we've run the gauntlet of coaches, credentialed professionals, medical experts and, yes, unhelpful diagnoses. You get ADD and depression diagnosis so easily its almost like a package deal, but they don't see satisfying and the standard treatments -- pills and therapy -- don't address the problem.
I'm here for every disability related post from Freddie.