Disability in general is not an identity. No specific disability constitutes an identity. It is unhelpful to look for meaning and identification in the random and unfortunate reality of disability. The urge to seek identity in disability does not stem from the actual disabling elements of any given disability but from broader dissatisfaction with one’s life and with the modern condition. People do not seek to be identified as disabled because they are hurt by their disorders but because they are otherwise lacking in fulfillment and confidence.
My 65 year old uncle moved to a skilled nursing facility three months ago because my grandfather died and my grandmother could no longer handle his care: cerebral palsy with spastic quadriplegia. He can’t bring his hand to his mouth anymore, or sit unassisted, though in his 20s and 30s he could walk, feed himself, he even went to college.
Another family member was released from involuntary commitment just yesterday.
The pain of disability and mental illness is not beautiful. That humans persist and cope in the face of devastation, that is remarkable. THAT is beautiful.
I'm surprised by how many of these I disagree with, as usually I find myself agreeing with Freddie about disability-related topics. However, a few of these theses strike me as very "old man shouts at clouds", as the kids say, or at the very least coming from a narrow experience of disability that doesn't capture many of the common experiences disabled people have.
For context, I'm a disability attorney who advocates for homeless and chronically-incarcerated people to get their disability benefits. I also assist very disabled low-income children. In my personal life, I have bipolar disorder (wouldn't wish it on my worst enemy) that's resulted in hospitalization before. This isn't to play the "lived experience" card, but just to provide context for where my perspective comes from.
"“Stigma” is not among the top one hundred problems of the average severely disabled person."
I disagree with this because the second-order effects of stigma have massive material consequences on people's lives. I see it every day appealing disability denials, where government bureaucrats flex every prejudiced muscle they have in determining that mental illness isn't real, drug addiction is unrelated to mental health, chronic pain is faked for attention, and disabled people are a burden that society should get rid of. This is working with agencies that exist TO provide support for disabled people, and yet, in the few years I've worked in this role, I've seen a judge deny a client because there was no blood test proving she had depression, I've seen a judge state on the record "maybe [client] will just die already and we won't have to spend time on this hearing", I've seen a client with voluminous favorable evidence denied for missing an appointment when his wheelchair was stolen, I've seen a client denied because "if she's able to panhandle she's able to work full time", I'm working on a case now where "her claims of pain aren't credible because she manages to withstand being homeless", I've seen a 3'2 client with dwarfism get classified as able to lift 50 lbs and do medium labor all day, I've had a client with an amputated foot accused of lying about missing a foot(!) - I have stories for days about the ways the people entrusted with administering benefits to disabled people treat disabled people as inherently liars, attention-seekers, burdens and wastes of space.
There's no empathy for why someone with a disability might struggle with the bureaucracy or getting medical care. There's no benefit of the doubt if someone can't prove that their mental illness predated their substance use. There's no common sense applied to those ridiculous standards about lifting 50 pounds. There's no ATTEMPT to understand disabilities at all. And this is the result of stigma and the belief that disabled people should be out of sight, out of mind, and put through rigorous and demeaning verification processes for having the audacity to ask for benefits at all.
"The endless proliferation of disabilities through boutique diagnoses such as “ME-CFS” and “chronic Lyme” stem fundamentally from market need - there is a market desire for additional disabilities to create identity and meaning, and so the medical community is creating additional disabilities."
I can't speak for chronic lyme, but ME-CFS is not just a boutique diagnosis you get by going to the doctor and asking to be seen as special. It's an exclusion diagnosis that people receive after doctors can't figure out what else could be wrong with someone who's experiencing concrete symptoms. I know the mental image of a CFS patient is some white female twitter user using her diagnosis as a bludgeon to talk over children with cancer, but that's not accurate to the CFS clients I have, who live in such pitiful ways that there's no question about whether they're choosing it just to look cool. Social clout and meaning are minor concerns for my CFS clients, who are too exhausted to get out of bed to take a piss, who sleep under cars in parking lots in the heat because they can't function enough to get to cooling centers or shelters, who forget their personal information so frequently that intake takes multiple sessions just to get their date of birth and what high school they went to.
Ultimately, I think Freddie is making some leaps to connect his (rightful) discomfort with socially-privileged affluent people appropriating the struggles of much less advantaged disabled people to an unproven concrete decline in social support for disabled people. I don't think a single person working at the SSA denying my clients for BS reasons is thinking of Tourette's TikTok teens. I don't think anyone looking at my profoundly disabled shit-smearing clients in administrative segregation is going "this person just has schizophrenia, but that NYT article said schizophrenia's just a more enlightened way of being, so this person must not be smearing their shit on the walls." I think there's so much material bias and resource scarcity already baked into the way we treat disability that TikTok teens are just a drop in the bucket, and that rants about them as if they're the source of any meaningful change in how our culture treats the profoundly disabled feels very shortsighted to me and like a bit of a hobby-horse.
I welcome your counter-perspective here, especially in making clear that impairments should be treated and pretending they are net positive can be counter-productive.
> There is no such thing as the “disabled community,” much less the “abled community.”
> People do not seek to be identified as disabled because they are hurt by their disorders but because they are otherwise lacking in fulfillment and confidence.
Perhaps there's some of that - but I believe, and have observed with family members with severe mental illnesses that are debilitating during different periods of their lives, that seeking out others with similar problems is immensely helpful - you can learn how to cope, treat, etc, and simply talking with others in a similar boat can ease the distress and loneliness associated with having a problem most around you do not have.
So I think it's important to distinguish between people privately seeking help in a community of people suffering similarly and broadcasting their problems to the general population.
I agree with you that we go down a dangerous path when we encourage people to make disability the foundation of their identity or personality. I also agree that there are some young people who exaggerate or invent disabilities to make themselves feel unique and interesting. And you are right that caregivers and family members, whose lives are often consumed by the onerous, often deeply unpleasant work of caregiving, ought to have a say in conversations about disability.
However, I disagree with some of your other statements. My daughter has a rare form of congenital muscular dystrophy and needs a cane to walk. She can’t walk for long distances, climb stairs, or do any activity that requires strength (for example, she made pasta for her lunch yesterday, and I had to dump out the water because the kettle was too heavy for her.) Her disabilities are indeed stigmatizing. She attracts attention when she walks, because of her unusual gait. People are kind to her, which is a huge improvement over the way disabled people were treated in the past, but it is very rare for people she encounters to treat her naturally, as they would an able-bodied person. There is always a layer of pity, of wanting to know what happened, that she has to get through before a normal interaction can begin. People handle her with kid gloves or offer unwanted help. They are trying to be nice, but most of the time she would prefer to open that door, carry her bags, etc, herself. (And when she needs help--for example with the pasta water yesterday--she asks.) So even if she weren’t trying to make her disabilities the foundation of her personality, other people impose it on her.
I am so proud of the strength and courage my daughter shows in her daily life. She just completed her first year of college, which she managed brilliantly, even though a simple walk to the library is exhausting for her. While she doesn’t harp on it or make it the basis of her personality, she does know that being disabled is part of who she is. I suspect that--annoying Zoomers on TikTok aside--it is the same for most disabled people.
Great post. I am curious what you all think of the concept of "ableist language," especially since the arguments for why we shouldn't use phrases like "fell on deaf ears" or "that's crazy" sound so much like the attitudes Freddie describes.
One guide says: "Ableist language is any word or phrase that devalues people who have a disability. Though often inadvertent, ableist language suggests that people with disabilities are abnormal."
Another complains that ableist language gives words like "deaf" a "negative connotation."
I have often thought that the concept of ableist language is part of this movement to deny that disabilities are undesirable. But at the same time, I would never use the word "retarded" as an insult -- so I must agree, on some level, for at least some words.
Explanation with examples: http://deareverybody.hollandbloorview.ca/wp-content/uploads/2018/08/DearEverybodyTipsonAbleistLanguage2018-19.pdf
An additional facet to this conversation is that “disabled” is a legal category as well. You have to be “disabled” to receive social security disability payments.
Obviously it’s possible to retain an identity separate from one’s disability despite qualifying for payments. But it certainly feels relevant from a socialist perspective that for some people, the options are to become legally “disabled” or to work for a living with no assistance. Especially in a country that values work so highly, it makes sense that the shame/guilt/loss of identity from not working would translate into an overidentification with “disabled” as an identity. I bet our society’s attitude toward disability would be very different if it were easier to get life-sustaining financial support from the government.
I'm just going to say it: I think deaf parents who refuse to get their children cochlear implants are insane and borderline child abusers.
It's hard to look at the near-enthusiasm that some quarters of lefty Twitter seem to have for the existence and prevalence of "Long Covid" and not think that people are seizing an opportunity to get in on the ground floor of a new disability, for precisely the social positioning reasons laid out in this article.
What's up with the mentioning ME/CFS as a boutique diagnosis? It has been known about for decades, it's actively being researched as a biomedical illness at major universities, and it is immensely disabling, even in it's milder forms. There are also concrete molecular differences observed in energy production in people with the condition. Just because some people fake or imagine illnesses doesn't mean entire illnesses are fake. It's strange that you say this because people do actually tell those with depression and psychosis to just buck up or get their head straight or whatever. How is that any different?
Wow. Lots of triggers in this piece. Makes me wonder what triggered you to write this. I agree to some of it, but wonder why you singled out ME/CFS, for example. Stigma, IMHO, refers to a hesitancy to embrace a person because of assumptions about their likely behavior or the extra effort involved in relating to them. Prejudice, in other words, assumptions derived from common “knowledge” rather than personal experience. It can certainly complicate life for a person with a disability.
I recently visited the grave of a cousin who died at age 11 mo. She was born with Down Syndrome at a time when doctors told new parents to not even take this baby home. She did come home, but was placed in an institution a little while later and died there. This wouldn’t happen today. I attribute this change to stigma and slowly dismantling stigma. Today, Down Syndrome babies are often aborted, but some parents embrace them and we have learned that can certainly be valued in our community.
I have some mixed feelings about your recent statements. On the one hand I agree with the dangers of seeking an identity-politics in disability. It is tempting for many young people now, as such politicizations of the wounded self seem like the only game in town. I at the age of nineteen was attracted to this idea, since I followed US popular culture while in another and very different society, but quickly I noticed the dangers that came with barking out a diagnosis about some form of "mad pride".
To say "stigma is not among the top hundred problems" is an analysis that would sooner occur to somebody who inhabits a Western society like urban North America or Western Europe, who can count on support from understanding and educated family members and adequate and competent mental health services. If you happen to be living in a provincial backwater or a religious community then it is a very different priority. I grew up in the Caribbean in a small village where many people believed that such conditions pertaining to mental illness categories really are either demonic possessions or resulting from sins or from perversion, it is a common belief in many societies that people who have a diagnoses represent a serious threat of physical harm to others. Such stigma can severely complicate one's existence, and one's mental health especially when you're recommended to avoid stressful circumstances! Though I agree that stigma does not compare to the the direct pain caused by illnesses–which may even dwarf the side-effects of medication.
I think a more nuanced position is needed. I like your critique of the term "neuro-atypical" because it carries the insulting implication that people suffering from a serious brain illness are simply "different" or need more understanding, and that overlooks the reality of physical pain caused by mental illnesses. But I also sense your arguments seem overly shaped by the need to inhabit a clearly defined position in the academic-media culture wars, are overly dismissive of the debts we owe to movements of the past, especially of the 1960s which sought to rethink and reform psychiatry.
While I share a healthy suspicion of the 1960s anti-psychiatry movement, a figure like RD Laing should be vindicated, as he was an actual psychiatrist who had great compassion for his patients' suffering, and who pioneered the era of reforms that led to psychiatry becoming much more attendant and helpful to the needs of patients. I think it's unfortunate that Laing's insider-critique of psychiatry was eclipsed and overshadowed by the far less sincere Foucault's "Madness and Civilization".
Anti-psychiatry was an extreme, but the mental health services that exist today and which are fortunate to have access to when in a crises would look dramatically different without that era of challenges posed by radical reformers.
When it comes down to the issue of stigma, and the critique around its over-emphasis in the culture-wars, perhaps we can find a parallel example in Adolph Reed Jr's critique of the anti-racism media phenomenon: the top priorities of darker-skinned people revolve around the mundane bread and butter issues, far removed from the much-marketed phobia of interactions with racists. Nevertheless, Reed Jr would never write off experience of discrimination, which can have violent and lethal consequences, as a non-issue.
Being married to someone bipolar has profoundly changed my understanding of mental illness and by proxy disability. Being manic is not a joke, it's horrible and life destroying. I couldn't agree that we shouldn't romanticize it. I say this as someone with deep sympathy for anyone who had to live through it.
#11 is, I think, beneath Freddie’s usual standards.
The fact that there are fakers, grifters, etc, does not mean those illnesses are not real.
Also #15, no stigma, - in my experience that’s not real. When someone hears certain diagnoses they make sure there’s distance between them. The sad part of the stigma is that there are real impacts around people surrounding the “ill” individual. Wanting to avoid those impacts can be tricky to distinguish from “stigma.”
People are not rushing out to hire as many (certain diagnoses) as they can. Just not.
Identity is useful when it informs a person's journey of self discovery. Learning that my experiences as a child were not unique to me and were actually just normal for an autistic person has been huge in helping me figure out things about my life. The problem is that woke narcissists use identity as a bludgeon instead of doing the hard work of learning to be persuasive, and also use it as a guide to joining a social hive mind that they want to control.
Also, the root of the disability in my autism is not some inherent physical limitation, like someone who lost their arms and legs, it exists in the social space, where baseline humans build all of their social spaces with no room for someone who doesn't have social norm wifi. Understanding that this is still a valid disability that needs accommodations while not necessarily meaning there is something inherently broken with me is important. In part because it helps me, in part because flatscan humans should reflect on the fact that their obsessive need for normalcy is so overpowering that anyone who is different is, in fact, automatically disabled just by virtue of how they will be treated.
Also, the condescending "compassion" of most people for the disabled is not the virtue you seem to want it to be. It comes with an assumption that my social status must always be minimal.
Finally, being "cured" would radically destroy my entire personality. Who I am and how i see the world is entirely rooted in how my brain works. Curing me, whatever that means, would kill me and leave in my place a "normal" person who vaguely resembles me. Your desire for a general rule about "disability" oversimplifies the topic and loses the nuance. Each disability is unique, just like yours is, and ultimately you are just doing what you accuse others of and speaking for the entire "disabled community," which a little bird told me doesn't exist.
Big challenge over here with numbers 14-16: stigma. Perhaps due to my work with people who have HIV, Hep C, and/or a cancer diagnosis and perhaps because I am looking beyond mental health disability and to including disability due to any of those three diseases. Maybe this is not the intended scope of these seventeen theses, and so a good chance I'm totally off-base in my reaction.
Because in many situations I've come across with those three illnesses, stigma is all too real. HIV is manageable now, for most, but AIDS was severely stigmatizing, particularly when attendant diseases (e.g. kaposi sarcoma) and side effects to meds (facial wasting, shoulder humps) were recognizable by anyone. And stigma is certainly a part of the equation when in some communities it continues to be seen as a gay disease. Perceptions of Hep C are also improving, but for many years it was often seen as a "dirty" illness that only impacted apparently dirty IDU and unsafe sex addicts. And stigma re. cancer is very real in certain cultures, so much so that the diagnosis is often hidden because relatives may react in a way that makes a person diagnosed feel as if it is their fault, as if it were due to their behavior or even past behaviors.
These are all real things and Freddie does a disservice to challenges about stigma when he handwaves those challenges aside.
My personal trainer is missing half of his left leg. You would never be able to tell if you weren't paying attention. (he just looks like the incredible hulk). I've jokingly (and not completely jokingly) told him that he should use the fact that he's a one legged trainer as a marketing tool. (I even registered the domain as a joke; it redirects to his website). He just scoffs. It's just something he's always had to deal with. I know there are many people with disabilities that are much harder to 'just deal with' but I appreciate that he doesn't make his disability the center of his identity.