(Note: I will be discussing brain-related disabilities, because I am not confident enough in my opinions on physical disability to be sure this model is useful. I am going to be interchangeably using “neurodivergence”, “brain weirdness”, etc. This post is intended to be inclusive of intellectually, developmentally, learning, and psychiatrically disabled people.)
It is often useful to distinguish the map and the territory. When we talk about the map, we talk about what we believe; when we talk about the territory, we talk about what’s true. These are not necessarily the same thing! I can draw a map that says that San Francisco is in Alaska, but that doesn’t mean that I should be wearing several layers of coats right now.
It’s important to note that– even if your map is accurate– the process of making a map loses information. A map of San Francisco doesn’t include everything you see walking down the street; on the other hand, you can look at a map of San Francisco when you can’t look at the whole city. Different maps are useful for different purposes: a BART station map is useful if you want to figure out which train to get on, while a map of vegan restaurants is useful if you are trying to feed my boyfriend Topher. And some maps really aren’t useful at all: a map that includes only streets that begin with A– even if it were perfectly accurate– is going to be pretty useless for San Francisco street navigation.
Talking about models of neurodivergence is a way of talking about different ways of mapping the far-off land of Brain Disability. There are lots of different maps! Terrifying Inhuman Monsters Who Will Snap And Kill Us All is a map. Lazy People Making Excuses For Their Character Flaws is a map. Children In Adult Bodies is a map. This site includes descriptions of a lot of maps.
However, I am going to examine two maps more closely: one of which is the most prominent in non-disability-rights communities, and one of which is most common in disability-rights communities.
The medical model of neurodivergence works something like this: just like some people can have sick bodies, some people can have sick brains. (Brain sickness is traditionally referred to as a “chemical imbalance”, whether or not there’s any evidence it is actually caused by imbalances in any chemicals.) If your brain is sick, you should go to a doctor and receive treatment that will make you not sick anymore.
The medical model is very useful for lots of people. Many people find that framing depression as something wrong with their brain is helpful. It’s a big step up from the Lazy People Making Excuses For Their Character Flaws model, which all too often means that people are miserable and then blame themselves for being miserable, or don’t seek appropriate accommodations because if they just had enough willpower they’d be able to fix it.
However, it also has serious flaws. The medical model leads to the idea that the only reason one could want to refuse treatment is that you’re too crazy to realize what’s wrong with you. While it is true that sometimes people are too crazy to realize that treatment would be in their best interests, many times people legitimately feel that hospitalization, therapy, or medication won’t help them; all too often, the tradeoff between these two is not recognized.
The medicalization of mental illness is often believed to reduce stigma: hence the array of “depression/anorexia/bipolar/suicidality is an ILLNESS” posters one is continually subjected to on Tumblr. However, evidence suggests that this may not work. While medicalization reduces blame, it makes people more pessimistic about recovery, has no effect on social distance, and either has no effect or worsens people’s perceptions of the dangerousness of neurodivergent people. Furthermore, in the past ten years, people have accepted the medical model much more, but continued to socially distance themselves from neurodivergent people, believe they are dangerous, and generally stigmatize neurodivergence. If anything, it increases levels of community rejection!
At the same time, the medical model isn’t very good for people who are going to have weird brains for the rest of their lives. A key part of the medical model is that treatment makes you not sick anymore. This leads to much-critiqued therapies like ABA for autism, which not only attempt to increase functioning but also eliminate behaviors that are neutral but not neurotypical– because as long as you’re still visibly neurodivergent, you’re still sick.
It contributes to a Fantasy of Being Neurotypical, similar to the Fantasy of Being Thin. You can spend your entire life trying to become a neurotypical person and failing– or you can accept that you’re neurodivergent and try to live the best life you can as a neurodivergent person.It is possible to have a happy, fulfilled life and be badbrains as fuck. And for those of us who have incurable mental Stuff, it is necessary.
The social model of mental illness works like this: some people are not able to do things that other people can do; this is called “impaired”. A person who cannot walk is impaired. Some impaired people are not accommodated by society; this is called “disabled”. A person whose apartment does not have a wheelchair ramp, which means they can’t leave the house, is disabled. However, even though I am legally blind without my glasses, I am not disabled; as long as my glasses don’t fall off my face, I can see as well as anyone else.
“Accommodation” is a broad term. Reduced-cost housing or aides paid for by the government are accommodations. Someone’s boss allowing them to work from home sometimes can be an accommodation. Extra time on tests is an accommodation. Your friends making dinner for you or avoiding wearing perfume that triggers your sensory sensitivities can be an accommodation. Occupational therapy or psychotherapy that teaches coping skills can be an accommodation. Even things that seem very medical, like psychiatric medications or electroconvulsive therapy, can be accommodations.
If you’re having a hard time understanding the social model of disability, I recommend you read Alicorn’s The Social Model of Humanity. Humans are impaired because we cannot sense hidden portals. However, we are not disabled by our inability to sense hidden portals, because nobody can sense hidden portals and so we build all our buildings with doors.
The social model of disability suggests that a lot of the harm of disability is caused not by the impairment itself but by disability. This seems probably true: physically impaired people who can participate fully in society are just as happy as anyone else, while physically impaired people who have to sit at home alone all day are not. It also seems plausible that this isn’t true for all disorders: for instance, it seems naively true that depression, being an impairment in one’s ability to feel happiness, would suck no matter how well-accommodated.
One might object that fully accommodating uncommon impairments is fairly expensive. For instance, the direct health care costs alone of Down Syndrome are more than four thousand dollars a year, not counting the costs of other accommodations. But in that case one must be clear that one is making the argument “these people are in pain because we cannot afford to make them stop being in pain”, not the argument “these people are in pain because of their disorder.”
ninecarpals said:
I’m curious about your happiness model when it comes to someone who’s lost function they used to have – a sighted person who went blind, for example, or someone who was left permanently bedridden after an accident. It seems plausible to me that someone who had never been able to see wouldn’t be nearly as unhappy with their blindness (if they were unhappy at all) as someone who had it and then lost it; even if they are still accommodated by braille, talking cross walks, etc., they will still lose something that may be key to their quality of life.
I have to admit that I have a violent reaction to some of the rhetoric from disability rights activists that downplay or outright discourage looking for cures, because one of my greatest fears in life is losing functionality, and damn right I want medicine to fix that problem for me. I want cochlear implants that work, and drugs to control schizophrenia, and robotic limbs, and all the other shiny things that would keep my quality of life right where I want it. For me, it’s not enough to be able to leave the house – I want to run, because I’ve experienced running, and it’s beautiful.
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queenshulamit said:
I think disabled people who are anti cure believe that if a cure is developed for their conditions they will be forced to have it. This seems like a valid fear. I am not sure how to ensure everyone gets what they want.
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ninecarpals said:
Sometimes that’s the fear; sometimes – as I’ve heard from the Deaf community – it’s a fear that their children will be forced to have it.
I confess that I have far more sympathy for the first concern than the second, and none for the assertion that either should discourage finding cures.
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Matthew said:
I think this depends what one means by “forced.” I am extremely skeptical that the government would suddenly mandate that impaired adults treat their impairments. On the other hand, I can easily imagine the following situation: A cure for impairment X is discovered, and it costs $Y. Employer accommodation of X costs $Z, where Z > Y. So the employee asks for accommodation, and the employer says that is no longer reasonable, because it’s cheaper for the employee to cure the problem than it is for the employer to accommodate it. I would not be surprised to see the courts agree with the employer.
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jeqofire said:
>It seems plausible to me that someone who had never been able to see wouldn’t be nearly as unhappy with their blindness (if they were unhappy at all) as someone who had it and then lost it; even if they are still accommodated by braille, talking cross walks, etc., they will still lose something that may be key to their quality of life.
In my experience, this is exactly what happens. Sometimes blind-from-birth people can wind up unhappy enough to prefer treatment, but generally speaking, blind-from-near-birth people are much more satisfied with their lives than people who went blind later on.
Personally, my vision was impaired from birth, but I could see well enough to play the likes of Super Mario Brothers until I was 14. I want back what I once had, but the idea of seeing out of two eyes instead of just one is perplexing to imagine.
(I have loads of problems besides just blindness, mind you, so I wouldn’t waste a genie wish on something so small. Fold it into something better, maybe. But if a cure was offered tomorrow without fixing anything else, and it was within my non-existent budget, I’d take it.)
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J said:
Obviously they are hugely overstated by abled persons, but many mental disabilities do have negatives even with substantial accommodations. People with Down Syndrome, for instance, are more likely to experience heart disease and die early and this is in large part due to the disorder itself. Loud noises often occur from things people don’t intentionally cause and these are usually going to have worse effects on an Autistic person. I’m skeptical these do have a huge effect on quality of life for people with Down Syndrome or Autism, but they very much do exist and are not really a function of lack of accommodations.
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AlexG said:
I think that your Down Syndrome example isn’t a case of the heart problems being caused by the mental disability, it’s a case of both being caused by the same thing (the extra chromosome).
IIRC a few people with Down Syndrome do not actually have any mental disability, but they do still have the distinctive facial features and the heart problems. This is certainly true of some other genetic disorders that usually (but don’t always) cause mental disabilities.
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J said:
I’m also thoroughly more mixed about how much it’s reasonable to try and push people towards passing as neurotypical. There’s absolutely nothing morally wrong about stimming or refusing eye contact. People should not be a dick to people who fail to meet these criteria. It’s still a useful skill to learn to stim in ways which are less likely to attract attention or feign or learn eye contact because you will get treated better as a result. I’m thus unconvinced that treatment which aims to get people to act more normally in these morally neutral arenas is necessarily bad given that it often has a useful effect. This is certainly caused by society being designed for neurotypical rather than disabled people but it seems easier to work on it from both directions even if that adds to the burden of autistic people.
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osberend said:
It’s still a useful skill to learn to stim in ways which are less likely to attract attention or feign or learn eye contact because you will get treated better as a result. I’m thus unconvinced that treatment which aims to get people to act more normally in these morally neutral arenas is necessarily bad given that it often has a useful effect.
In principle, this is correct as far as it goes. There are, however, several problems in practical application:
1. Autistic behaviors such as stimming or avoiding eye contact are often useful, particularly for the avoidance of excessive psychological stress. You describe a substitutionary approach (I believe this is roughly what Functional Behavioral Analysis is, but I might be confused), which at least partially avoids this problem, except (a) not everyone uses such an approach (in particular, when it comes to children, a substantial number of parents don’t want their kid to fake eye contact and stim subtly, they want their kid to make genuine eye contact and not stim at all, and will not accept mere approximations) and (b) sometimes there is no good substitute for a particular behavior for a particular individual.
2. Autistic behaviors (like instinctive behaviors generally) are natural, and suppressing them can be stressful even if the behavior’s purpose is not stress release. The analogy I’ve seen is trying to avoid smiling in public.
3. When it comes to people who don’t have a choice in whether they receive “treatment,” such as children and adults who are deemed legally incompetent, the approach is not always “You want to learn how to not do this, in order to get treated better socially? Okay, let’s explore that.” Often, it’s “Your doing this is unacceptable, and you will stop.”
4. Related to the above is the use of physical and/or psychological punishment as a means of obtaining compliance, sometimes to the point of fairly unambiguous torture. The apex of this on an institutional level is probably the taxpayer-funded and unspeakably evil Judge Rottenberg Center (cw for googlers: bottomless pits of suffering). At a somewhat lower but still profound level, we have quiet hands (cw: physical and psychological abuse of children, silencing, trauma).
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J said:
I guess it warrants saying that obviously a decent number of things dealing with disabilities are evil point blank and that aversive behavioral therapy is almost always abhorrent.
I’m very confused because in my experience, any professional ableism I’ve recieved has been of the “oh we shall treat you as a young kid how quaint” variety which is obviously eye-rolly and frustrating but not traumatizing. Conversely I had incredibly good and helpful therapy by incredibly compassionate and skillful persons so didn’t have to deal with any of the abusive bullshit. I’m pretty sure that it’s possible to teach a large portion of Autistic people certain neurotypical social skills even if they’re brains don’t understand it naturally as well. (It’s also obviously not possible to teach some Autistic people certain social skills so it’s morally abhorrent to treat, say, being unable to understand bodylanguage as something worthy of shaming over). Doing this is super useful in many of the cases where it works and therefore not something I view as ableist. Obviously many people do things shittily and in ways that are actively toxic. But I’m not yet convinced it’s so endemic that we have to also cut out giving people the tools to pass if they want when doing so is super useful.
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Lawrence D'Anna said:
“””
But in that case one must be clear that one is making the argument “these people are in pain because we cannot afford to make them stop being in pain”, not the argument “these people are in pain because of their disorder.”
“”””
I think this mixes up descriptive claims about causality with normative claims about the extent to which there is a duty to accommodate, and in doing so begs the question on the normative part.
The pain be less if accommodation was better. The pain would be less if the disorder was smaller. Descriptively, that’s all you can say. You can’t say one of these counterfactuals is the “real” cause. When you say lack of accommodation is the real cause, you’re really saying that there is some duty to accommodate, which is the main normative issue being debated in the first place.
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Lawrence D'Anna said:
Rather than arguing for accommodation on the basis of duty and fairness, I’d rather make an efficiency argument.
If transaction costs were zero, then we’d expect a lot of accommodations to happen because they are worth more to disabled people than they cost everyone else. (http://en.wikipedia.org/wiki/Coase_theorem) But transaction costs are HUGE. In real life very few accommodations are sold or purchased because transaction costs are so high. Thus moral or legal norms requiring a certain amount of accommodation can lead to a more economically efficient outcome.
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LTP said:
I agree with compassion and accommodation, but there are limits, and I’ve seen some very extreme forms of “accommodation” proposed that would oppress able-bodied people if they became the norm.
For example, there was once an autistic member of an online community I am apart of that argued that neurotypicals should just communicate purely with verbal language and not body language, tone, or implication, and to do anything else was oppressing him. He also mocked the idea that those forms of communication were useful at all. He said they should be purely verbal all the time, not just when interacting with somebody they know is on the spectrum.
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LTP said:
* “able-bodied” should be “non-disabled”
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Ghatanathoah said:
Because of these limits, I would argue that instead of defining disability as “an impairment that makes one’s life harder due to lack of accommodation” we should instead define it more precisely as “an impairment that makes one’s life harder due to lack of accommodation, and making the necessary accommodations would benefit the impaired people more than it would hurt the non-impaired people.”
By this standard wheelchair users are “disabled” by lack of curb cuts. However, I am not “disabled” by society’s unwillingness to make me a powered exoskeleton, even though my ability to lift heavy things is severely impaired compared to many professional athletes.
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Patrick said:
The one I see most often is that seeing people without disabilities doing things the disabled cannot is hurtful, so this should be minimized. Under this view, stairs plus ramp isn’t sufficient, because the existence of the stairs creates problems.
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Matthew said:
I actually remember reading a complaint once from a woman who had a muscular disorder that made it nearly impossible for her to walk up or down ramps. She was pissed because some buildings had “accommodated everyone” by replacing stairs (which she could climb) with ramps (which she could not).
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Sniffnoy said:
Meanwhile, some “impairments” seem more like trade-offs in the first place (almost any impairment probably has some small upside, but frequently these are ignorable) in which case it would seem that both the able and the disabled people should be considered impaired compared to the notional superhuman who has the upside of both…
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Ghatanathoah said:
A lot of the “upsides” of impairments take the form of:
Person is unable to do X, so they have to do Y to compensate. As a result they are more practiced in Y than people who can do X, and therefore better at it.
The superhuman in this case would be someone who can do X, but is so driven that they are also able to put in the practice necessary to master Y.
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Sniffnoy said:
Right, that’s a lot of what I was classing as ignorable. There are other ways of constructing the superhuman, though; imagine someone who could simply learn the skill with a lot less practice in the first place, or who didn’t forget it with time.
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roe said:
Some stories about my family’s interactions with institutions and brain weirdness:
My wife was diagnosed depressive and put on SSRIs and Cognitive Behaviour Therapy. IMO, the CBT was a huge factor because it gave her a sense of agency over the condition – this was an important lesson for later.
My oldest daughter was diagnosed as high-functioning autistic in jr. kindergarten. I had problems socializing all through grade school and saw signs in her that she was going to be similar. There’s a difference here: I didn’t have a “diagnosis”.
Since then, we’ve told her she’s “differently brained.” She’s internalized this and even describes herself this way to her peers.
She’s had many accommodations from the school system & teachers including various suggestions for integrating “stimming” behaviour in non-disruptive ways (by way of contrast, most of my teachers scolded me and complained about my behaviour to my parents – I would disengage by staring out a window during lessons). There was one exception: my daughter used to self-stimulate by rubbing her genitals. We sat her down and explained this was making people very uncomfortable and had to stop (it was basically an early sex-talk – we had no choice). Once explained in plain terms, she did stop.
When I talk to my daughter about how she interacts with people, I kind of explain in plain terms why people are the way they are and let her draw her own conclusions and choose her own course of action, because, again, agency.
So, our current model seems to be serving my daughter’s needs *way* better then it served mine (which… I can’t exactly blame society for as autism was still a new diagnostic category and wasn’t well known yet), I basically see accommodation everywhere I look (peanuts are banned from the school and at work I see signs requesting people refrain from wearing strong perfumes &etc.), which is good, but accommodation is a negotiated process with limits.
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giselaperez said:
Reblogged this on Gisela Pérez González.
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