self-appointed spokespeople don't own disability issues
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.
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.
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.
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.
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.
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?
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.
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.
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.
"This collapse into a cutesy, self-impressed culture of giggling about conditions that have ruined and ended lives? Infuriating."
Yeah this is infuriating and seemingly everywhere. It's like they're starring in their own 1970's comedy..."Ooooh me and my neurodivergent brain. Whoopsie, what am I like?"
I follow a few shitposting groups for TV shows on Facebook and I reckon a good 50-60% of memes are people saying 'The autistic urge to...'/'My ADHD when I...' It seems to have just become another accessory to show off on socials. Like OCD was about a decade ago.
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.
I love this! I work as a Direct Support Professional (DSP), a kind of aide for people with disabilities. My employer specializes in serving clients with intellectual disability, including clients with severe autism. Now, I myself could be construed as “disabled” within the disability-rights framework, because I myself am (technically) on the autism spectrum. But it’s an absurdity to suggest, as so many activist types do, that my problems and the problems of my clients are essentially the same thing. I wouldn’t have been hired if I wasn’t significantly more capable than my clients—and, conversely, my clients wouldn’t qualify for a DSP if they didn’t have significant and very real cognitive challenges. One of my clients is 39 years old but has the affect, IQ, and cognitive ability of a child in mid-elementary school. She’s looking forward to Santa Claus coming next month. In what meaningful sense are me and that client both disabled? How is there any connection between my condition and my client? There isn’t, but disability studies denies this outright.
I'd love to hear from Freddie and others about allowing large scale homeless encampments? The line "there can be no autonomy without rationality" really strikes a chord. Over the last 18 months, a couple of tent cities have appeared in my community. Lots of fingers pointed at the massive spike in housing costs, but, that has been a problem for decades. I think a reduction in enforcing personal use drug offenses and failure to maintain mental health/drug counseling services during the pandemic, plus fentanyl, are also major contributors. In response, the community has created sufficient space at local shelters to house the hundreds of people who are currently living in tents. When one of these encampments was recently cleared, only 2 of the ~40 people accepted the offer to move to a shelter, despite months of outreach and individual case assessments.
What community is doing a great job on this topic? Winter in Maine is no joke... are we really going to let people freeze to death because we are respecting their choice to live in a tent?
Excellent summary of some of your most important arguments. Would love a whole book on this subject
I'm here for every disability related post from Freddie.
You mentioned how accommodations are used to get advantages in education, but disability accommodations are for all kinds of things. My large company recently mandated that employees start coming to the office a few times a week. The European employees are talking to various union reps to stay home, while the Americans are exchanging tips on how to get diagnosed with ADHD, anxiety or PTSD. Similarly, a lot of chronically unemployed people are jumping through some hoops to get a government disability check (https://apps.npr.org/unfit-for-work/). Or consider the people that get diagnosed with "anxiety" or "chronic pain" in states with medicinal weed.
I'd guess that disability rates would plummet with more robust social programs or other legislation. As is, disability serves as a backdoor to social change that isn't politically feasible.