I am pretty sure I could get a diagnosis of Asperger's or whatever if I shopped around. My personal concern is this: years ago autism as a diagnosis was applied to individuals who were so profoundly and fundamentally disabled that they were incapable of speech or feeding themselves or navigating a world where any loud noise could prove to be debilitating.
I make $200k a year. I used to fly into Manhattan every week and a friend and I were steadily making our way through all the Michelin starred restaurants in the city on a lark. Isn't it more than a little grotesque to place me "on the spectrum" with individuals who need round the clock care? Any category broad enough to include (literal) jet setters such as myself and the institutionalized is meaningless.
And the broadening of that category is a relatively recent development. I remember reading a writer years ago who pointed out that in previous generations individuals such as myself would simply have been categorized as "eccentric". Mr. deBoer addressed this definitional creep in one of his recent articles. I find it completely plausible that the driving factor behind it is precisely this compulsion to define disability around community. There is no real community in the world though that counts among its ranks both millionaires and the institutionalized other than the obvious category of being human.
ASD made Elon Musk the richest man in the world. In high school in SA it also made other kids throw him down the stairs and smash is head into the ground until he was unrecognizable. So...eh... I'm not sure where I'm going with this.
There’s certainly insane/institutionalized rich people out there. Howard Hughes would be one example. More recently Lee Holloway who entirely lost his mind to dementia while founding Cloudflare.
People on disability benefits are often asked to prove time and time again, beyond what's reasonable, that they're actually disabled and deserving of benefits. Being disabled and on government benefits is a very precarious state, and accusation of faking your disability can be life-ruining. I have no questions about why someone on disability benefits might insist, over and over again, as an identity, that they are very disabled and anyone questioning them wants to hurt them - because the impact of people believing you aren't disabled can rip your only source of income out from under you.
I think most (or almost all) people aren't doing any of that _consciously_, but it's an extra sadness on top of the specific miseries from which they're suffering.
(I think it's also probably 'real' – to some extent – but then there's probably lots of 'long X' dragging us down that we're only slowly being able to clearly identify.)
I'm not sure if I disagree with you or not (because putting long COVID in quotes makes me think you're skeptical of its existence) but I think what you've pointed to, if true, is illustrative of at least point 17 above: no one with severe(?) long COVID thinks of it as something other than debilitating and has gained only suffering from it, compounded by neglect and incompetence on the part of the medical system.
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.
However
> There is no such thing as the “disabled community,” much less the “abled community.”
and
> 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.
That sucks. Worth noting it doesn't help everybody.
This reminds me of a similar point: some people find comfort in others knowing about their struggles - for instance, telling people they meet about it right away so as to be fully understood. Others prefer privacy. The former inevitably get more attention because they are seeking it (in this case, in good faith). But awareness of the latter, that many with disabilities would prefer not to discuss it with most people, can be completely lost.
It cuts both ways. It's always good to meet people with similar issues, but making your mental illness the core of your social life and identity can perversely make it harder to change and overcome it. Even live as a functional adult while managing it. I get the basic premise, but I sometimes feel like a lot of the mental health community has decided that treating a mental illness, much less trying to cure it is problematic and ableist. There are some circles that barely stop short of admitting these illnesses are even bad. Just wave it away with talk about "neurotypical."
When I was in grad school for education and taking courses on adolescent mental health, the consensus in the field seemed to be that bringing kids with mental health or trauma issues together in small, structured environments could be good for recovery and growth, but left alone for too long would eventually bond around their shared problem and increasingly self-identify with it, leading to all the negative outcomes Freddie outlines above.
I'm reminded of the differing value between support groups and the more proactive forms of therapy. The former is, or can be, an important part of not feeling isolated. But it is the later that actually attempts to find paths forward towards better health. Engaging in the first while ignoring the second can create a closed circle, a feedback loop, rather than a way to actually engage with a challenge. A closed circle with no potential paths forward can only keep things static and will support the taking on of an illness as an actual identity.
Hopefully this doesn't come across as pedantic, but I was thinking it might be useful to frame what you are referring to as "communities of people who share a disability" rather than "The Disabled Community" as invoked in the discourse and to which Freddie and Andre_Aceman refer.
In the former, the emphasis is on actually existing groups of actually existing people, attempting mutual support and sharing knowledge about a shared condition. The latter is more of a chimera that's invoked by would-be representatives or co-opters for their own self-interest.
*The* disabled community, as in the one true association of all people with disabilities, definitely doesn't exist. I don't think a Paralympian on a magazine cover and a homeless vet with an undiagnosed mental disorder have anything in common.
But communities united by a specific disability have a pretty clear place in the social and political life of disabled people. I think especially of deaf communities, like those Central American orphans who invented their own sign language--surely making up a language is a sign of a community self-organizing to meet a pressing need! But I think this supports Freddie's point: while there is a wacky fringe that thinks all treatments for deafness or blindness are eugenics, the vast majority of people with these conditions understand that they have negative impacts on quality of life, and that they need to come together and propose specific, legally-binding accommodations from institutions, not new emoji buttons or cancelling their enemies on Twitter.
I think this is where the fixation on cultural identification as a replacement for social alienation, with the byproduct of self-aggrandizing narcissism, goes haywire. If it is agreeable that the function of linguistic semiotics can lead to the production of culture, I think it is reasonable to make a distinction between the phenomenon of a unique sign language and culture developed in isolation, and the inherent disability present in the condition of being deaf.
The notion that cultural identity is inherent and immutable (and therefore idealistic in essence) is ahistorical, immaterial, and untenable. It obfuscates the fact that this standpoint assumes that the *ideology* that any one given individual has developed or adopted is the true *philosophical* reality for all, which is philosophically contradictory and decadent (and not even really consistently humanist, despite all the liberal moralizing that tends to happen over this stuff).
I think Deaf communities may be a bit of an exception here, because they are also generally linguistic minorities, groups united by a common language not shared with the majority they live amongst. Language is an incredibly powerful social marker and vehicle for culture and not at play in most group of disabled folks.
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.
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.
Well said. Those who assist family members may spend a large fraction of their waking hours towards it - and that provides meaning, even pride. This feels distinct from the celebration of disability as strength that Freddie is (IMO correctly) decrying. I fear without acknowledging these nuances, Freddie's important points will be lost on many readers who find meaning in their struggles with their own disabilities or in assisting affected loved ones.
To be fair, some people who imply that the pain of disability is beautiful are probably trying to just say the latter, but aren't articulate enough to make this evident.
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.
I think there's a legitimate conflict between ease/utility/clarity and giving offense. There's probably no simple, universal rule and I'm skeptical of any attempts to propose one.
I had a student last year chew me out for using a text from the 19th century that used "retarded." I had to explain to them that for centuries, the word simply meant "slowed down" or "delayed," and "mental retardation" was a clear term with a pretty clear use that most people could understand. That didn't prevent it from becoming a slur. Getting rid of it was definitely a net-positive, but the horde of euphemisms that emerged to cover it, like "mentally handicapped" or "intellectually disabled," are definitely less precise, require more explanation, and are more likely to be misinterpreted.
I just don't see the point of 'getting rid of slurs'. People will just use the new euphemisms as slurs – and they do. What are we gaining exactly? Is 'running on the euphemism treadmill' an effective demonstration of support for the relevant disabled people? Is it even possibly _better_ than, you know, actual support? I remain extremely skeptical that this is anything more than misguided.
> Another complains that ableist language gives words like "deaf" a "negative connotation."
'The deaf' seem like the most glaring ... 'problematic' (?) kinda-counter-example to this post. (I basically agree with the normative claims in the post.) AFAIK, they kinda _are_ a 'real community'.
I think it would be better for people _to_ use 'retarded'. Once you've noticed the 'euphemism treadmill', how could you not want to get off it?
If we refuse to get off of the euphemism treadmill, then we should expect a never-ending cycle of choosing a new euphemism, trying to police casual language usage of that term, and eventually giving up (e.g. when children pick up on that the current euphemism makes a _great_ insult), and then starting the cycle over. I just can't escape my extreme skepticism that this does anything at all. Surely everyone involved knows it's really bullshit?
That it is morally bad to denigrate someone for a disability for which they're not culpable (or even then) just seems like an independent fact from what words people use to put each other down. Running on the euphemism treadmill seems so nakedly performative and yet another example of 'magical word thinking'.
Counterpoint: OCD and autistic are pretty specific diagnoses, but have caught on as informal adjectives for supposedly-related personality types. At that point, it's an issue of morals, not vocabulary: a decent person shouldn't say she's "kinda OCD about my calendar." I also like specificity, but it's not perfect.
I think there's a difference between phrases that incorporate the literal meaning of the word (in "deaf ears" the word deaf is used to mean "can't hear") and using a disability word to mean "bad" (e.g. "That's so lame" or "That's retarded.")
In that case, a replacement wouldn't be a "euphemism" because people weren't thinking of the actual meanings in the first place.
It just seems inevitable that people, out of cruelty or even attempted humor, will use the same words for real disabilities to describe people without them.
It's also inevitable that the meaning of words will become whatever the relevant community of language users understands them to mean. Because of that, it's not clear that there _are_ any "actual meanings in the first place". Language is inescapably social – there are no meanings independent of particular people in particular contexts.
I would not have predicted that anyone is upset by "That's so lame.". I understand the logic now that you've pointed it out, but I just don't think it's of any utility to follow that logic to its inevitable conclusion. I'm not sure even 'bad' would survive!
I don't think what I wrote has anything to do with "pomo", but I can understand why you or others might think that. I think "pomo" is making a much stronger claim, e.g. that _reality_ is itself social; not just language.
But you're, sadly, probably right about the futility of encouraging people to jump off the euphemism treadmill!
You raise a good point; I myself will say, "That's nuts", but wouldn't say "That's retarded." I guess that's my hypocrisy.
Looking through the link you provided, I sometimes find it difficult to tell the meaningful difference between the Good Speech and the Bad Speech. It's pretty evident (to me, anyway) that you shouldn't call anyone a mongoloid, but what's the distinction between "She receives special education services" and "She's in special ed"? This hyper-focus on language can get tiresome. Here's a story about such hyper-focus.
Some time ago, I joined a Facebook group entitled, "White Nonsense Roundup", whose purpose was to help users whose status updates are filled with people spouting racist nonsense. I thought, "Hey, this seems good" and joined. Hoo, boy.
I'd page through the group discussions, and began to see that the place was really just a home for performative wokeness, where users fought over topics like who-threw-the-first-brick-at-Stonewall. (Answer: NOT a black trans woman.) Anyway, there was one gigantic row when someone had the temerity to say that Martin Luther King, Jr. had "given his life" for the cause of civil rights. Like velociraptors, the wokescolds homed in, charged, and tore this person to shreds before you could say, "Clever girl."
"MLK did not 'give his life'--he was murdered! Murdered!" was the kind of comment I saw, and most were way less polite than that. I took the original statement to be a kind of rhetorical flourish, but apparently it was a society-destroying, diversity-crushing act of the most foul racism. That's when I left the group.
So while I think there is importance to be attached to language, I think sometimes we let the tail wag the dog.
I tutored foreign students in a variety of subjects in college. Have you ever tried to explain to a non-native speaker why "person of color" is acceptable versus "colored persons" which is verboten? It's especially ironic that I was trying to explain the difference to actual racial minorities (at least in the US) who were baffled by the "difference".
At some point I had to stop and wonder if the whole point wasn't a shibboleth to indicate who was and who wasn't in the club.
Think of it as a class and status marker. Especially as keeping up with the ever-changing demands of political correctness requires leisure time and the desire to be part of the in-crowd.
At the onset of the 'people of color' use in 2007/8, it was abundantly clear that enforcement of word choice was a power move, and was being used to differentiate between those who would fall in line and those who would not.
It's a little gratifying to see people picking up on this in a broader way now, if still frustrating because those 15 years were...suboptimal.
That's exactly what it is - virtue signaling. The elites have always used language (and other behavioral markers) as a gate or code - to keep out the riff raff. I would venture that much of the focus at elite schools is to teach people how to speak and act so that they will be perceived as a member of the UMC or wealthy. The rules of etiquette and propriety also work in this fashion.
My own experience as an autodidact buttresses this argument. I am very well read but grew up blue collar so I didn't hear certain words pronounced correctly and often pronounce them incorrectly in polite company. The looks on people's faces is instructive. I have outed myself as “not one of them” and you can literally feel their energy shift upon this discovery.
Another gate is school name dropping. I was in a gathering of women in tech and we were instructed to make a connection with those around us by revealing what school we went to. The looks on the faces of of my small group was quite humorous when they dropped names like Brown and Sarah Lawrence and I said I had 2 AA degrees from community colleges. They were so embarrassed that they didn't know what to say. It was quite funny.
The whole culture war over language is about signaling what tribe you belong to so they can assess your “worth” and treat you accordingly. It's a form of dehumanization as old as the hills used by the powerful to keep their little club sacrosanct.
Having the views and attitudes of a member of the "right" class is critical, especially for someone seeking entry into that class. Paul Fussell writes extensively on this.
BTW, this is also why things like "free museum entry" often are a disguised subsidy to the educated classes.
My barn cat relatives don't go to museums, and it's not because they can't sneak in. It's because knowing Manet from Monet is not important to them.
I find using the kind of language that gets labeled as "abelist "is a crutch that rarely helps a person's writing. It tends to be vague and emotional and often a poor fit for the situation. To take an example from downthread (sorry Slaw):
"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."
Obviously Slaw doesn't think they are actually out of touch with consensus reality, but what is meant to be put across by 'insane' here? A stupidity-and-wrongness slurry plus strong censure? To my mind, the point of the word is mainly to be a vehicle for that negative judgment, and it adds little beyond that; replacing "insane" with "bad" wouldn't substantively change the message. Consider alternatives:
-I think deaf parents who refuse to get their children cochlear implants are borderline child abusers.
or
-I think deaf parents who refuse to get their children cochlear implants are incredibly selfish and borderline child abusers.
I think either of these is stronger than the original, and the second (example of the kind of you think you might say instead) is both stronger and more informative.
Rarely do I stumble on one of these terms used well. The reason that using this kind of language can be damaging is not at all unrelated to its poor suitability to good writing, but a lot of people are already making the former point.
Throughout this entire discussion, at all times keep in mind that none of this emphasis on consciousness raising or language changes how the pie is sliced.
From that perspective, it's a distraction and an energy suck.
I don't think it's nearly as important as some, but I do think it's part and parcel of gaining acceptance within society. Changes in language are both a symptom and a cause of shifting attitudes, and shifting attitudes have material implications, both political and personal. I also happen to think that reducing the degree to which some members of society feel like irredeemable pieces of garbage because of factors outside of their control is a worthy political goal itself.
The distraction argument proves too much--isn't this whole discussion a distraction from solving our truly existential problems? Neither of us is having this conversation because we think it is the most socially worthy use of our time.
We probably agree on what ought to be prioritized, but I don't think these language discussions should be verboten.
(Or as roundly mocked for the sake of pseudoedgelordy counter-signaling, "guys I said said lame I guess I'm ableist now, haha" like wow, very clever and brave. But I digress.)
We all know test cases that suggest some kind of limit or standard for what's OK to say. "Retarded" and "crippled" feel uncomfortable (even though I'm fine appropriating the first colloquially to disparage something unrelated to disability, like a terrible policy). But I think often what makes language "ableist" is nothing related to the disability or offending word at all, but rather the failure to consider that the language you use *might* bother them used that particular way. That is, a process question of relational sensitivity rather than a content issue.
I don't think the point of calling out ableist language is (or should be) either to defend the normalcy of disability or deny that they are undesirable. For me the point is to keep people epistemically humble, by not letting them blithely assume that just because the word seems fine to them it's fine to everyone. But this is often taken to excess, and policing of language doesn't help anybody. Especially because I think true ableism tends to be more about the act and the attitude than the word, with the word at worst being a reflection of the act.
As someone with a 21-year-old sister who has some pretty severe special needs, what I think so much of the online "ableist language" community misses is that my sister doesn't need someone to stop saying "that's lame" but rather to actually acknowledge her existence and say hello/be her friend. So many people try to use perfect language, but, as Freddie has pointed out in different essays, never actually do anything to tangibly help those in need. They avoid people with disabilities while championing themselves as the greatest advocates of the disabled.
I think I can understand why people would be afraid to interact with people like your sister – it sure _seems_ fraught if you're aware of everything you 'can't say'! It's extra sad to think that what people _do_ try to do 'to help' might make _actually_ helping harder.
I've always been sad that lots of people seem to have trouble talking with _children_ generally. They're just (more or less) ignorant people! But I've found that almost all of them appreciate plain, honest, sincere, and direct speech.
You must have enjoyed the blowback from yesterday's post about the Depp/Heard trial. 😉
I agree with you, but this leaves open the key question of who gets to decide which are the "condition[s] that should not be ended through treatment and prevention" and are 'therefore not disabilities'. What makes this particularly difficult is that often the most effective treatments must be implemented on infants, e.g. cochlear implants. The deaf community has been at odds over cochlear implants for infants since the invention of the devices. (And, I do every much think they are a community - albeit a deaf person may choose not to be a member.) Is it purely up to the parents? I don't think so but I also don't know how to weigh society's interest here.
Yes, it does boil down to bodily autonomy, doesn't it? And, I don't know if the issue of bodily autonomy can ever be resolved in society. Who has it? When do they have it and to what extent do they have it?
Both my adolescent children have psychological disorders. One is in group DBT. The other is on Lexapro. It is *very* easy to get medications. In fact, our pediatrician pushed for me to send the daughter in therapy to a psychiatrist for medication because she was exhibiting "too much" anxiety at an annual physical and didn't want to hear that this was atypical.
The other principle we should be able to agree on is to let people make their own decisions about whether to take psych drugs—instead of either forcing them on people or forcibly depriving them of drugs they're reliant on.
IMO it's horrific that children are still being given SSRIs, with their well-known libido-destroying effect. What does that drug do to kids going through puberty?
I’d settle for accuracy. If there is near-universal (let’s say 85%) agreement upon a thing, go with “Community.” If there isn’t, find a better word/phrase.
Acceptable (consensus): “the Christian community considers Jesus to be especially divine”
Unacceptable (no consensus): “the Christian community considers Jesus to be a member of the Trinity”
Replacement (for clarity): “some factions of Christianity considers Jesus to be a member of the Trinity”
Language should be used as clearly as possible whenever possible. If there is consensus, highlight it. Where there is not, don’t manufacture it.
I think the consensus for your second statement is well over 85% among Christians. Mormons disagree, but there are only 7 million of those or so in a country of 330 million that's still majority Christian at least nominally. The rest of the world has a much smaller proportion than that. Jehovah's Witnesses add another 9 million or so globally, but that's still not enough to meet the 15% threshold.
> 3. Disability is net-negative by definition. If a condition is not a net-negative, then it cannot be said to be dis-ability.
This is still prejudging the normative. Yes, 'dis'ability entails some downside but that doesn't mean it's net negative by definition. It's really hard to argue that deafness, for example, is bad – there are plenty of deaf people who don't think it's analytically bad and plenty of good reasons to think that's not just a cope. That's not to say most people's experiences of disability aren't a net negative (I know I would be happier if I didn't have arthritis and I don't buy into some patronising idea that I'm supposed to love chronic joint pain).
There's also certainly a difference between physical and mental disability (yes, yes, everything is linked I know but still). I think the standpoint theory people have a point when it comes to listening to the testimony of the physically disabled, including people who don't see their disability as a net negative. Less so when it comes to some mental disabilities because having impaired cognition/reasoning/self-image etc. are often part and parcel of those disabilities, so you can't just say "listen to the testimony of the paranoid schizophrenics acceptance movement".
I think the process of becoming disabled and the early process of adapating is certainly a net negative, but that disability itself need not be. Being born deaf means you can't hear, but some deaf people think that is outweighed by things like having a unique experience of language and music. The process of rapidly going deaf, for me, would massively interfere with my life and be pretty awful. But not awful a priori.
My thinking on this is largely informed by Elizabeth Barnes' work – she's one of the more thoughtful 'social model' writers that doesn't just say things like 'actually disability only exists because of ableism' (see this paper arguing that a 'mere difference' theory of disability does not entail that curing disability is immoral or that it is not immoral to cause someone else to become disabled: https://elizabethbarnesphilosophy.weebly.com/uploads/3/8/1/0/38105685/causing_disability.pdf)
I remember having this argument in years ago, and I always think 'if a drug had this side effect in 5% of children when taken by pregnant mothers, would it be allowed on the market?'. A drug that turned their hair blonde would; a drug that turned them deaf wouldn't. It came up during a discussion of thalidomide, but I've found it to be a pretty good gut check.
There are some weird corner cases, like circumcision – as an uncircumcised person that certainly feels like a disability to me, but clearly cultures do it. Children being born infertile would be a disability, but it's definitely something adults choose for themselves. Albinism must feel like a disability in cultures where it's stigmatised. These examples are really just thought experiments though, I agree with all your points on disability in general.
The experience of becoming deaf as an adult seems radically different from that of growing up deaf, learning sign language, and using it with others fluent in it. I preferred "The Gentrification of Disability." Here in some places, as I read the piece, you use your valid concerns about some cultural and linguistic trends to indict diagnoses without conveying any understanding of them, conditions deserving more serious consideration if you're going to mention them at all (ME-CFS stood out to me in particular).
I think there's a lot of truth to what you say but there are exceptions. The deaf community, for example, is very much an identity. They have not only their own community but their own distinct language, and necessarily so because of the nature of the disability. They are certainly disadvantaged in society but they are generally proud of their community and even occasionally look down on those who are not members of their group. (I have no direct experience with the deaf community, only second-hand readings, so I welcome comments from anyone who does.) It's a very different phenomenon from mental disabilities like bipolar or ADHD, and from physical handicaps.
Yes, it's different from other physical handicaps because they've developed not only real communities but their own culture.
It reminds me of the dynamics of languages/dialects. It really would be great, in a lot of ways, were everyone in the world to speak a common language. But it's also true that the loss of that cognitive and cultural diversity would be incredibly sad. I think Freddie would agree that sometimes – often even – there's just no escaping sad tradeoffs.
I mentioned this elsewhere but think it’s worth repeating.
If it is agreeable that the function of linguistic semiotics can lead to the production of culture, I think it is reasonable to make a distinction between the phenomenon of a unique sign language and culture developed in isolation, and the inherent disability present in the condition of being deaf.
I think the fixation on cultural identification as a replacement for social alienation, with the byproduct of self-aggrandizing narcissism, is where things go off the rails.
I think that's unfair. I don't disagree that the behavior _is_ 'abusive', but I find it easy to sympathize with their own plight anyways. They really do seem to be a community and I write that as someone that is constantly irked by casual use of that term. I think it's just an inevitably sad fact that they _should_ lose the community they built to support each other, so that their kids can finally escape the very real and debilitating condition under which they've all suffered for so long.
It seems very similar (in kind if not degree) to groups of people united around the solution to some big difficult problem – to the degree that they're effective, and the problem can be solved, it's inevitable that the group should, eventually, die or break-up. The loss of that cohesion really is just sad, even if the reason for it is a much greater joy.
Yes, I don't doubt the sincerity of their motives but the outcome is horrific.
Years ago I saw grainy footage on public television of testing of one of the early implant prototypes. The test subject was a young woman, and as she wondered at the sound of her own voice that she was able to hear for the first time she grew progressively more emotional until she finally burst into tears. Apparently the experience is not uncommon because when I tried to find the clip via Google just now I came across dozens of videos. Any one of those videos could serve as the final, decisive rebuttal to the argument that some communal good is served by diminishing the lives of children.
I've become less and less convinced over my life that anything could ever be a "final, decisive rebuttal" to any argument; if only because most people don't possess sufficient introspective reflection, impulse to honesty, or courage, to 'really express what they mean or feel'.
It seems pretty obvious that, in this case, the arguments against the implants are attempts to prevent, or just delay, the inevitable loss or dissolution of social environments that really are immensely valuable and significant to the people terrified of losing them.
I think sympathy is also important in achieving any kind of reasonable outcome for everyone involved tho. I suspect some of this behavior might be so extreme _because_ it's also somewhat-obviously unreasonable even to the people involved.
I don't personally know anybody that's walked on the moon but I am fairly confident that real life examples exist.
That said you are absolutely correct that online lunacy is far less common in the real world. Despite its rarity it does have an outsize impact on the public discourse though precisely because of its man bites dog characteristic.
My concern stems precisely from my own personal experiences in real world spaces, which are increasingly being colonized by the pathologies of online disability culture.
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.
I'm bipolar and I live with a bipolar brother-in-law. We both take depakote. He takes more, plus antipsychotics. I've been stable since the initial incident in 2011, and don't really consider myself disabled. He is clearly disabled (can't drive, and gets a disability check, and has severe shakes from the meds. My shaking is moderate, but getting worse over time).
Regarding the "community." I think there's a disability activist community of sorts, that has made some big impacts clearly. There still needs to be much more. Buses, for instance, take wheelchairs these day, but in my snowy city the bus stops are often very poorly and infrequently cleared, and people in wheelchairs still need to get around in winter. My guess is that there is less low-income disability activism.
What an asinine comment.
I am pretty sure I could get a diagnosis of Asperger's or whatever if I shopped around. My personal concern is this: years ago autism as a diagnosis was applied to individuals who were so profoundly and fundamentally disabled that they were incapable of speech or feeding themselves or navigating a world where any loud noise could prove to be debilitating.
I make $200k a year. I used to fly into Manhattan every week and a friend and I were steadily making our way through all the Michelin starred restaurants in the city on a lark. Isn't it more than a little grotesque to place me "on the spectrum" with individuals who need round the clock care? Any category broad enough to include (literal) jet setters such as myself and the institutionalized is meaningless.
And the broadening of that category is a relatively recent development. I remember reading a writer years ago who pointed out that in previous generations individuals such as myself would simply have been categorized as "eccentric". Mr. deBoer addressed this definitional creep in one of his recent articles. I find it completely plausible that the driving factor behind it is precisely this compulsion to define disability around community. There is no real community in the world though that counts among its ranks both millionaires and the institutionalized other than the obvious category of being human.
ASD made Elon Musk the richest man in the world. In high school in SA it also made other kids throw him down the stairs and smash is head into the ground until he was unrecognizable. So...eh... I'm not sure where I'm going with this.
Is being a nerd an actual medical condition?
Yes, it’s caused by a lack of mirror neurons.
And there are no individuals who fall on one side of the threshold who lack nerdy qualities?
There might be. The human brain is notoriously complicated.
There’s certainly insane/institutionalized rich people out there. Howard Hughes would be one example. More recently Lee Holloway who entirely lost his mind to dementia while founding Cloudflare.
"It comes with an assumption that my social status must always be minimal."
Elon Musk and Mark Zuckerberg both have autism so I'm pretty sure that isn't true.
“You're being dishonest if you think their social position is good. They are constantly mocked and belittled for their "weirdness."
We’re talking about Zuck and Elon? If so that has to be the craziest comment I’ve ever heard on the internet in a while.
That second paragraph is unintelligible.
People on disability benefits are often asked to prove time and time again, beyond what's reasonable, that they're actually disabled and deserving of benefits. Being disabled and on government benefits is a very precarious state, and accusation of faking your disability can be life-ruining. I have no questions about why someone on disability benefits might insist, over and over again, as an identity, that they are very disabled and anyone questioning them wants to hurt them - because the impact of people believing you aren't disabled can rip your only source of income out from under you.
I think most (or almost all) people aren't doing any of that _consciously_, but it's an extra sadness on top of the specific miseries from which they're suffering.
(I think it's also probably 'real' – to some extent – but then there's probably lots of 'long X' dragging us down that we're only slowly being able to clearly identify.)
I'm not sure if I disagree with you or not (because putting long COVID in quotes makes me think you're skeptical of its existence) but I think what you've pointed to, if true, is illustrative of at least point 17 above: no one with severe(?) long COVID thinks of it as something other than debilitating and has gained only suffering from it, compounded by neglect and incompetence on the part of the medical system.
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.
However
> There is no such thing as the “disabled community,” much less the “abled community.”
and
> 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.
That sucks. Worth noting it doesn't help everybody.
This reminds me of a similar point: some people find comfort in others knowing about their struggles - for instance, telling people they meet about it right away so as to be fully understood. Others prefer privacy. The former inevitably get more attention because they are seeking it (in this case, in good faith). But awareness of the latter, that many with disabilities would prefer not to discuss it with most people, can be completely lost.
Or some humans who have figured out how to put themselves in charge of said "community".
A lot of "community leaders" are self-appointed.
It cuts both ways. It's always good to meet people with similar issues, but making your mental illness the core of your social life and identity can perversely make it harder to change and overcome it. Even live as a functional adult while managing it. I get the basic premise, but I sometimes feel like a lot of the mental health community has decided that treating a mental illness, much less trying to cure it is problematic and ableist. There are some circles that barely stop short of admitting these illnesses are even bad. Just wave it away with talk about "neurotypical."
When I was in grad school for education and taking courses on adolescent mental health, the consensus in the field seemed to be that bringing kids with mental health or trauma issues together in small, structured environments could be good for recovery and growth, but left alone for too long would eventually bond around their shared problem and increasingly self-identify with it, leading to all the negative outcomes Freddie outlines above.
I'm reminded of the differing value between support groups and the more proactive forms of therapy. The former is, or can be, an important part of not feeling isolated. But it is the later that actually attempts to find paths forward towards better health. Engaging in the first while ignoring the second can create a closed circle, a feedback loop, rather than a way to actually engage with a challenge. A closed circle with no potential paths forward can only keep things static and will support the taking on of an illness as an actual identity.
Hopefully this doesn't come across as pedantic, but I was thinking it might be useful to frame what you are referring to as "communities of people who share a disability" rather than "The Disabled Community" as invoked in the discourse and to which Freddie and Andre_Aceman refer.
In the former, the emphasis is on actually existing groups of actually existing people, attempting mutual support and sharing knowledge about a shared condition. The latter is more of a chimera that's invoked by would-be representatives or co-opters for their own self-interest.
Yes, exactly, I think Freddie's posts on these matters will be better understood if he acknowledges this distinction - that is, if he agrees.
*The* disabled community, as in the one true association of all people with disabilities, definitely doesn't exist. I don't think a Paralympian on a magazine cover and a homeless vet with an undiagnosed mental disorder have anything in common.
But communities united by a specific disability have a pretty clear place in the social and political life of disabled people. I think especially of deaf communities, like those Central American orphans who invented their own sign language--surely making up a language is a sign of a community self-organizing to meet a pressing need! But I think this supports Freddie's point: while there is a wacky fringe that thinks all treatments for deafness or blindness are eugenics, the vast majority of people with these conditions understand that they have negative impacts on quality of life, and that they need to come together and propose specific, legally-binding accommodations from institutions, not new emoji buttons or cancelling their enemies on Twitter.
I think this is where the fixation on cultural identification as a replacement for social alienation, with the byproduct of self-aggrandizing narcissism, goes haywire. If it is agreeable that the function of linguistic semiotics can lead to the production of culture, I think it is reasonable to make a distinction between the phenomenon of a unique sign language and culture developed in isolation, and the inherent disability present in the condition of being deaf.
The notion that cultural identity is inherent and immutable (and therefore idealistic in essence) is ahistorical, immaterial, and untenable. It obfuscates the fact that this standpoint assumes that the *ideology* that any one given individual has developed or adopted is the true *philosophical* reality for all, which is philosophically contradictory and decadent (and not even really consistently humanist, despite all the liberal moralizing that tends to happen over this stuff).
I think Deaf communities may be a bit of an exception here, because they are also generally linguistic minorities, groups united by a common language not shared with the majority they live amongst. Language is an incredibly powerful social marker and vehicle for culture and not at play in most group of disabled folks.
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.
A future bereft of tragedy and also courage and comedy. Bleak. But perhaps this too shall pass?
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.
Well said. Those who assist family members may spend a large fraction of their waking hours towards it - and that provides meaning, even pride. This feels distinct from the celebration of disability as strength that Freddie is (IMO correctly) decrying. I fear without acknowledging these nuances, Freddie's important points will be lost on many readers who find meaning in their struggles with their own disabilities or in assisting affected loved ones.
To be fair, some people who imply that the pain of disability is beautiful are probably trying to just say the latter, but aren't articulate enough to make this evident.
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
I think there's a legitimate conflict between ease/utility/clarity and giving offense. There's probably no simple, universal rule and I'm skeptical of any attempts to propose one.
I had a student last year chew me out for using a text from the 19th century that used "retarded." I had to explain to them that for centuries, the word simply meant "slowed down" or "delayed," and "mental retardation" was a clear term with a pretty clear use that most people could understand. That didn't prevent it from becoming a slur. Getting rid of it was definitely a net-positive, but the horde of euphemisms that emerged to cover it, like "mentally handicapped" or "intellectually disabled," are definitely less precise, require more explanation, and are more likely to be misinterpreted.
I just don't see the point of 'getting rid of slurs'. People will just use the new euphemisms as slurs – and they do. What are we gaining exactly? Is 'running on the euphemism treadmill' an effective demonstration of support for the relevant disabled people? Is it even possibly _better_ than, you know, actual support? I remain extremely skeptical that this is anything more than misguided.
> Another complains that ableist language gives words like "deaf" a "negative connotation."
'The deaf' seem like the most glaring ... 'problematic' (?) kinda-counter-example to this post. (I basically agree with the normative claims in the post.) AFAIK, they kinda _are_ a 'real community'.
I think it would be better for people _to_ use 'retarded'. Once you've noticed the 'euphemism treadmill', how could you not want to get off it?
If we refuse to get off of the euphemism treadmill, then we should expect a never-ending cycle of choosing a new euphemism, trying to police casual language usage of that term, and eventually giving up (e.g. when children pick up on that the current euphemism makes a _great_ insult), and then starting the cycle over. I just can't escape my extreme skepticism that this does anything at all. Surely everyone involved knows it's really bullshit?
That it is morally bad to denigrate someone for a disability for which they're not culpable (or even then) just seems like an independent fact from what words people use to put each other down. Running on the euphemism treadmill seems so nakedly performative and yet another example of 'magical word thinking'.
Counterpoint: OCD and autistic are pretty specific diagnoses, but have caught on as informal adjectives for supposedly-related personality types. At that point, it's an issue of morals, not vocabulary: a decent person shouldn't say she's "kinda OCD about my calendar." I also like specificity, but it's not perfect.
I think there's a difference between phrases that incorporate the literal meaning of the word (in "deaf ears" the word deaf is used to mean "can't hear") and using a disability word to mean "bad" (e.g. "That's so lame" or "That's retarded.")
In that case, a replacement wouldn't be a "euphemism" because people weren't thinking of the actual meanings in the first place.
But disability _is_ bad!
It just seems inevitable that people, out of cruelty or even attempted humor, will use the same words for real disabilities to describe people without them.
It's also inevitable that the meaning of words will become whatever the relevant community of language users understands them to mean. Because of that, it's not clear that there _are_ any "actual meanings in the first place". Language is inescapably social – there are no meanings independent of particular people in particular contexts.
I would not have predicted that anyone is upset by "That's so lame.". I understand the logic now that you've pointed it out, but I just don't think it's of any utility to follow that logic to its inevitable conclusion. I'm not sure even 'bad' would survive!
I don't think what I wrote has anything to do with "pomo", but I can understand why you or others might think that. I think "pomo" is making a much stronger claim, e.g. that _reality_ is itself social; not just language.
But you're, sadly, probably right about the futility of encouraging people to jump off the euphemism treadmill!
You raise a good point; I myself will say, "That's nuts", but wouldn't say "That's retarded." I guess that's my hypocrisy.
Looking through the link you provided, I sometimes find it difficult to tell the meaningful difference between the Good Speech and the Bad Speech. It's pretty evident (to me, anyway) that you shouldn't call anyone a mongoloid, but what's the distinction between "She receives special education services" and "She's in special ed"? This hyper-focus on language can get tiresome. Here's a story about such hyper-focus.
Some time ago, I joined a Facebook group entitled, "White Nonsense Roundup", whose purpose was to help users whose status updates are filled with people spouting racist nonsense. I thought, "Hey, this seems good" and joined. Hoo, boy.
I'd page through the group discussions, and began to see that the place was really just a home for performative wokeness, where users fought over topics like who-threw-the-first-brick-at-Stonewall. (Answer: NOT a black trans woman.) Anyway, there was one gigantic row when someone had the temerity to say that Martin Luther King, Jr. had "given his life" for the cause of civil rights. Like velociraptors, the wokescolds homed in, charged, and tore this person to shreds before you could say, "Clever girl."
"MLK did not 'give his life'--he was murdered! Murdered!" was the kind of comment I saw, and most were way less polite than that. I took the original statement to be a kind of rhetorical flourish, but apparently it was a society-destroying, diversity-crushing act of the most foul racism. That's when I left the group.
So while I think there is importance to be attached to language, I think sometimes we let the tail wag the dog.
I tutored foreign students in a variety of subjects in college. Have you ever tried to explain to a non-native speaker why "person of color" is acceptable versus "colored persons" which is verboten? It's especially ironic that I was trying to explain the difference to actual racial minorities (at least in the US) who were baffled by the "difference".
At some point I had to stop and wonder if the whole point wasn't a shibboleth to indicate who was and who wasn't in the club.
Think of it as a class and status marker. Especially as keeping up with the ever-changing demands of political correctness requires leisure time and the desire to be part of the in-crowd.
At the onset of the 'people of color' use in 2007/8, it was abundantly clear that enforcement of word choice was a power move, and was being used to differentiate between those who would fall in line and those who would not.
It's a little gratifying to see people picking up on this in a broader way now, if still frustrating because those 15 years were...suboptimal.
That's exactly what it is - virtue signaling. The elites have always used language (and other behavioral markers) as a gate or code - to keep out the riff raff. I would venture that much of the focus at elite schools is to teach people how to speak and act so that they will be perceived as a member of the UMC or wealthy. The rules of etiquette and propriety also work in this fashion.
My own experience as an autodidact buttresses this argument. I am very well read but grew up blue collar so I didn't hear certain words pronounced correctly and often pronounce them incorrectly in polite company. The looks on people's faces is instructive. I have outed myself as “not one of them” and you can literally feel their energy shift upon this discovery.
Another gate is school name dropping. I was in a gathering of women in tech and we were instructed to make a connection with those around us by revealing what school we went to. The looks on the faces of of my small group was quite humorous when they dropped names like Brown and Sarah Lawrence and I said I had 2 AA degrees from community colleges. They were so embarrassed that they didn't know what to say. It was quite funny.
The whole culture war over language is about signaling what tribe you belong to so they can assess your “worth” and treat you accordingly. It's a form of dehumanization as old as the hills used by the powerful to keep their little club sacrosanct.
Having the views and attitudes of a member of the "right" class is critical, especially for someone seeking entry into that class. Paul Fussell writes extensively on this.
BTW, this is also why things like "free museum entry" often are a disguised subsidy to the educated classes.
My barn cat relatives don't go to museums, and it's not because they can't sneak in. It's because knowing Manet from Monet is not important to them.
I find using the kind of language that gets labeled as "abelist "is a crutch that rarely helps a person's writing. It tends to be vague and emotional and often a poor fit for the situation. To take an example from downthread (sorry Slaw):
"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."
Obviously Slaw doesn't think they are actually out of touch with consensus reality, but what is meant to be put across by 'insane' here? A stupidity-and-wrongness slurry plus strong censure? To my mind, the point of the word is mainly to be a vehicle for that negative judgment, and it adds little beyond that; replacing "insane" with "bad" wouldn't substantively change the message. Consider alternatives:
-I think deaf parents who refuse to get their children cochlear implants are borderline child abusers.
or
-I think deaf parents who refuse to get their children cochlear implants are incredibly selfish and borderline child abusers.
I think either of these is stronger than the original, and the second (example of the kind of you think you might say instead) is both stronger and more informative.
Rarely do I stumble on one of these terms used well. The reason that using this kind of language can be damaging is not at all unrelated to its poor suitability to good writing, but a lot of people are already making the former point.
Throughout this entire discussion, at all times keep in mind that none of this emphasis on consciousness raising or language changes how the pie is sliced.
From that perspective, it's a distraction and an energy suck.
I don't think it's nearly as important as some, but I do think it's part and parcel of gaining acceptance within society. Changes in language are both a symptom and a cause of shifting attitudes, and shifting attitudes have material implications, both political and personal. I also happen to think that reducing the degree to which some members of society feel like irredeemable pieces of garbage because of factors outside of their control is a worthy political goal itself.
The distraction argument proves too much--isn't this whole discussion a distraction from solving our truly existential problems? Neither of us is having this conversation because we think it is the most socially worthy use of our time.
We probably agree on what ought to be prioritized, but I don't think these language discussions should be verboten.
(Or as roundly mocked for the sake of pseudoedgelordy counter-signaling, "guys I said said lame I guess I'm ableist now, haha" like wow, very clever and brave. But I digress.)
We all know test cases that suggest some kind of limit or standard for what's OK to say. "Retarded" and "crippled" feel uncomfortable (even though I'm fine appropriating the first colloquially to disparage something unrelated to disability, like a terrible policy). But I think often what makes language "ableist" is nothing related to the disability or offending word at all, but rather the failure to consider that the language you use *might* bother them used that particular way. That is, a process question of relational sensitivity rather than a content issue.
I don't think the point of calling out ableist language is (or should be) either to defend the normalcy of disability or deny that they are undesirable. For me the point is to keep people epistemically humble, by not letting them blithely assume that just because the word seems fine to them it's fine to everyone. But this is often taken to excess, and policing of language doesn't help anybody. Especially because I think true ableism tends to be more about the act and the attitude than the word, with the word at worst being a reflection of the act.
As someone with a 21-year-old sister who has some pretty severe special needs, what I think so much of the online "ableist language" community misses is that my sister doesn't need someone to stop saying "that's lame" but rather to actually acknowledge her existence and say hello/be her friend. So many people try to use perfect language, but, as Freddie has pointed out in different essays, never actually do anything to tangibly help those in need. They avoid people with disabilities while championing themselves as the greatest advocates of the disabled.
But isn't that really the definition of wokeism? Behavior and language that makes the actor/speaker feel good, without doing any good?
Agreed!
Virtue signaling is a hell of a lot easier (and earns you more cachet, certainly among The People That Matter) than actual feline decency.
I think I can understand why people would be afraid to interact with people like your sister – it sure _seems_ fraught if you're aware of everything you 'can't say'! It's extra sad to think that what people _do_ try to do 'to help' might make _actually_ helping harder.
I've always been sad that lots of people seem to have trouble talking with _children_ generally. They're just (more or less) ignorant people! But I've found that almost all of them appreciate plain, honest, sincere, and direct speech.
You must have enjoyed the blowback from yesterday's post about the Depp/Heard trial. 😉
I agree with you, but this leaves open the key question of who gets to decide which are the "condition[s] that should not be ended through treatment and prevention" and are 'therefore not disabilities'. What makes this particularly difficult is that often the most effective treatments must be implemented on infants, e.g. cochlear implants. The deaf community has been at odds over cochlear implants for infants since the invention of the devices. (And, I do every much think they are a community - albeit a deaf person may choose not to be a member.) Is it purely up to the parents? I don't think so but I also don't know how to weigh society's interest here.
Yes, it does boil down to bodily autonomy, doesn't it? And, I don't know if the issue of bodily autonomy can ever be resolved in society. Who has it? When do they have it and to what extent do they have it?
Both my adolescent children have psychological disorders. One is in group DBT. The other is on Lexapro. It is *very* easy to get medications. In fact, our pediatrician pushed for me to send the daughter in therapy to a psychiatrist for medication because she was exhibiting "too much" anxiety at an annual physical and didn't want to hear that this was atypical.
The other principle we should be able to agree on is to let people make their own decisions about whether to take psych drugs—instead of either forcing them on people or forcibly depriving them of drugs they're reliant on.
IMO it's horrific that children are still being given SSRIs, with their well-known libido-destroying effect. What does that drug do to kids going through puberty?
I think that the difference between “there are deaf communities” and “there is A Deaf Community” cannot be overstated in this context.
I think you are correct. There are factions and schisms everywhere. Does this mean we can no longer use over arching terms?
I’d settle for accuracy. If there is near-universal (let’s say 85%) agreement upon a thing, go with “Community.” If there isn’t, find a better word/phrase.
Acceptable (consensus): “the Christian community considers Jesus to be especially divine”
Unacceptable (no consensus): “the Christian community considers Jesus to be a member of the Trinity”
Replacement (for clarity): “some factions of Christianity considers Jesus to be a member of the Trinity”
Language should be used as clearly as possible whenever possible. If there is consensus, highlight it. Where there is not, don’t manufacture it.
I think the consensus for your second statement is well over 85% among Christians. Mormons disagree, but there are only 7 million of those or so in a country of 330 million that's still majority Christian at least nominally. The rest of the world has a much smaller proportion than that. Jehovah's Witnesses add another 9 million or so globally, but that's still not enough to meet the 15% threshold.
> 3. Disability is net-negative by definition. If a condition is not a net-negative, then it cannot be said to be dis-ability.
This is still prejudging the normative. Yes, 'dis'ability entails some downside but that doesn't mean it's net negative by definition. It's really hard to argue that deafness, for example, is bad – there are plenty of deaf people who don't think it's analytically bad and plenty of good reasons to think that's not just a cope. That's not to say most people's experiences of disability aren't a net negative (I know I would be happier if I didn't have arthritis and I don't buy into some patronising idea that I'm supposed to love chronic joint pain).
There's also certainly a difference between physical and mental disability (yes, yes, everything is linked I know but still). I think the standpoint theory people have a point when it comes to listening to the testimony of the physically disabled, including people who don't see their disability as a net negative. Less so when it comes to some mental disabilities because having impaired cognition/reasoning/self-image etc. are often part and parcel of those disabilities, so you can't just say "listen to the testimony of the paranoid schizophrenics acceptance movement".
You have the ability to render yourself permanently deaf. Why haven't you?
I think the process of becoming disabled and the early process of adapating is certainly a net negative, but that disability itself need not be. Being born deaf means you can't hear, but some deaf people think that is outweighed by things like having a unique experience of language and music. The process of rapidly going deaf, for me, would massively interfere with my life and be pretty awful. But not awful a priori.
My thinking on this is largely informed by Elizabeth Barnes' work – she's one of the more thoughtful 'social model' writers that doesn't just say things like 'actually disability only exists because of ableism' (see this paper arguing that a 'mere difference' theory of disability does not entail that curing disability is immoral or that it is not immoral to cause someone else to become disabled: https://elizabethbarnesphilosophy.weebly.com/uploads/3/8/1/0/38105685/causing_disability.pdf)
If you cannot hear the person behind you shouting that you're about to walk into an open pit that is a huge disadvantage in my book.
And yet there's nothing inherent to being deaf that means that will happen to you, so once again it isn't bad 'by definition'.
With cochlear implants are you still by definition deaf versus merely hearing impaired?
I remember having this argument in years ago, and I always think 'if a drug had this side effect in 5% of children when taken by pregnant mothers, would it be allowed on the market?'. A drug that turned their hair blonde would; a drug that turned them deaf wouldn't. It came up during a discussion of thalidomide, but I've found it to be a pretty good gut check.
There are some weird corner cases, like circumcision – as an uncircumcised person that certainly feels like a disability to me, but clearly cultures do it. Children being born infertile would be a disability, but it's definitely something adults choose for themselves. Albinism must feel like a disability in cultures where it's stigmatised. These examples are really just thought experiments though, I agree with all your points on disability in general.
The experience of becoming deaf as an adult seems radically different from that of growing up deaf, learning sign language, and using it with others fluent in it. I preferred "The Gentrification of Disability." Here in some places, as I read the piece, you use your valid concerns about some cultural and linguistic trends to indict diagnoses without conveying any understanding of them, conditions deserving more serious consideration if you're going to mention them at all (ME-CFS stood out to me in particular).
Yes, that one is beyond excusability.
I think there's a lot of truth to what you say but there are exceptions. The deaf community, for example, is very much an identity. They have not only their own community but their own distinct language, and necessarily so because of the nature of the disability. They are certainly disadvantaged in society but they are generally proud of their community and even occasionally look down on those who are not members of their group. (I have no direct experience with the deaf community, only second-hand readings, so I welcome comments from anyone who does.) It's a very different phenomenon from mental disabilities like bipolar or ADHD, and from physical handicaps.
Yes, it's different from other physical handicaps because they've developed not only real communities but their own culture.
It reminds me of the dynamics of languages/dialects. It really would be great, in a lot of ways, were everyone in the world to speak a common language. But it's also true that the loss of that cognitive and cultural diversity would be incredibly sad. I think Freddie would agree that sometimes – often even – there's just no escaping sad tradeoffs.
I mentioned this elsewhere but think it’s worth repeating.
If it is agreeable that the function of linguistic semiotics can lead to the production of culture, I think it is reasonable to make a distinction between the phenomenon of a unique sign language and culture developed in isolation, and the inherent disability present in the condition of being deaf.
I think the fixation on cultural identification as a replacement for social alienation, with the byproduct of self-aggrandizing narcissism, is where things go off the rails.
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.
I think that's unfair. I don't disagree that the behavior _is_ 'abusive', but I find it easy to sympathize with their own plight anyways. They really do seem to be a community and I write that as someone that is constantly irked by casual use of that term. I think it's just an inevitably sad fact that they _should_ lose the community they built to support each other, so that their kids can finally escape the very real and debilitating condition under which they've all suffered for so long.
It seems very similar (in kind if not degree) to groups of people united around the solution to some big difficult problem – to the degree that they're effective, and the problem can be solved, it's inevitable that the group should, eventually, die or break-up. The loss of that cohesion really is just sad, even if the reason for it is a much greater joy.
Yes, I don't doubt the sincerity of their motives but the outcome is horrific.
Years ago I saw grainy footage on public television of testing of one of the early implant prototypes. The test subject was a young woman, and as she wondered at the sound of her own voice that she was able to hear for the first time she grew progressively more emotional until she finally burst into tears. Apparently the experience is not uncommon because when I tried to find the clip via Google just now I came across dozens of videos. Any one of those videos could serve as the final, decisive rebuttal to the argument that some communal good is served by diminishing the lives of children.
I've become less and less convinced over my life that anything could ever be a "final, decisive rebuttal" to any argument; if only because most people don't possess sufficient introspective reflection, impulse to honesty, or courage, to 'really express what they mean or feel'.
It seems pretty obvious that, in this case, the arguments against the implants are attempts to prevent, or just delay, the inevitable loss or dissolution of social environments that really are immensely valuable and significant to the people terrified of losing them.
Sympathy in this case is an absolutely understandable reaction but the road to Hell and all that.
I think sympathy is also important in achieving any kind of reasonable outcome for everyone involved tho. I suspect some of this behavior might be so extreme _because_ it's also somewhat-obviously unreasonable even to the people involved.
Is anyone aware of this happening in real life? I'm racking my brain and I can't think of an example.
None of Freddie's articles over the last couple of weeks qualify?
I don't know Freddie in real life.
I don't personally know anybody that's walked on the moon but I am fairly confident that real life examples exist.
That said you are absolutely correct that online lunacy is far less common in the real world. Despite its rarity it does have an outsize impact on the public discourse though precisely because of its man bites dog characteristic.
My concern stems precisely from my own personal experiences in real world spaces, which are increasingly being colonized by the pathologies of online disability culture.
You should include more anonymized real world examples. It's way too easy to find extreme non-representative outliers online.
Join a NAMI online support group
Deaf people are the big one that springs to my mind. (I'm still VERY sympathetic to them.)
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.
I'm bipolar and I live with a bipolar brother-in-law. We both take depakote. He takes more, plus antipsychotics. I've been stable since the initial incident in 2011, and don't really consider myself disabled. He is clearly disabled (can't drive, and gets a disability check, and has severe shakes from the meds. My shaking is moderate, but getting worse over time).
Regarding the "community." I think there's a disability activist community of sorts, that has made some big impacts clearly. There still needs to be much more. Buses, for instance, take wheelchairs these day, but in my snowy city the bus stops are often very poorly and infrequently cleared, and people in wheelchairs still need to get around in winter. My guess is that there is less low-income disability activism.