And I’m nearsighted. I consider that a minor disability. Personally, I prefer to handle it using glasses, despite their limitations, but I don’t resent people who opt for LASIK surgery. I do, however, believe that people with eyesight like mine should not be allowed to drive without some form of corrective lenses. Call be a bigot, but that’s just my opinion.
If someone tells me they are just differently abled rather than disabled, I will respect that and not refer to them as disabled when I am in their presence.
But I think “disabled” is a fair descriptor when someone requires special accommodation to carry out a task or live a typical life. So that means someone with dyslexia whose writing can pass as normal once it goes through spell-check is not disabled, but the dyslexic person who must have someone read and write for them is. In a world where everyone eschews their physical bodies (minus the brain) and lives through robots, the quadriplegic person is not disabled. But the person with anencephaly is.
So I do think what constitutes “disability” can depend on the greater context. But I don’t think it is helpful to frame all disabilities as the product of a flawed society. We can always do better, but there are some people who will never be able to function no matter how much energy is invested in them. This isn’t anyone’s “failure”. It’s just shitty reality.
I agree with at least most of the concepts you’ve used here, and I think some of them are not applied in the ways people currently talk day-to-day.
My own experience, using what I know best: I have never once come across a person with ADHD, whether online or in real life, for whom any aspect of ADHD was positive or neutral. A few have made that claim, but further exploration has shown every time that they were mistakenly taking characteristics everyone shares, and calling them the good side of ADHD. On the other hand, I have met several autistic people who had numerous positive or neutral characteristics directly attributable to autism, plus some negative but inconsequential ones. And several other autistic people who had numerous disabilities directly attributable to autism, and no advantages that I could see, though they might know some that I had no way of noticing. Not every diagnosable condition is a disability, or even a disadvantage. Some are, some might never be, and some are a “mixed bag”.
I don’t object to calling a spade a spade, but I do object to calling everything found in the shed a spade just because that’s where spades are commonly kept. If my stretched metaphor hasn’t been stretched too far.
I think part of the problem is using autism itself as the poster child for this convo. Because of its nature as a spectrum disorder, I think it encompasses both disabled and non-disabled people. So of course any statement that basically says “autism is a disability” is going to rankle those on the non-disabled end, or their associates. Better phrasing is “can be a disability”
I think it’s exactly the right poster child for this convo. After all, we’re debating where the line is separating disability from personality trait. What better illustration of this question than a condition that spans the length of both options?
Just out of curiosity, could you name “a lot” of these characteristics getting mislabeled as disability? Preferentially outside of asd disorders (since that seems to be the most easily identifiable and agreed upon “gray area” of this subject).
I don’t agree - you’re looking to most effectively draw a line, but you’re trying to do it on a gradient. The distinction is somewhere in the middle between “strapped screaming to a bed” and “functional Straight Dope poster”, but that’s not very helpful, is it? Not a line so much as shades of description from non- to extemely- Much easier to do with other disabilities, like “blind” or “paraplegic” - although, even there, there’s grey - how much myopia is a disability? My wife has just a little hearing loss - is she disabled? There’s never going to be a bright line. Settle for a legalistic functional definition if one is needed (and it is for disability, since we reserve some accommodations, like parking, assited living, and even jobs, for the disabled).
I say it’s easier to first find your personal line (or society’s line) in more clear-cut cases (say - ability to function independently without specialized equipment or human assistance), and then apply those criteria to autism. Rather than look to autism as the template, use it as the test case once you’ve decided on your criteria. Otherwise it’s all to easy for people who don’t agree (say, people who don’t want to spend money on public accommodations) to point to edge cases and go “you’re not seriously calling *this guy *disabled, are you? Why should we give money/stop mocking retards/change our behaviour”
Actually, I agree with everything here. Thank you. If you’ll recall I started the OP and I didnt begin the conversation with any particular condition as a template for disability (I can see how one could say I used deafness as a template however). My comment to you was a result of pondering the shorter-sighted idea of using a gray-area disability/characteristic to represent the conversation of what separates a disability from a characteristic. But I do see now if getting at tangible answers is what is desired, we need to begin such a convo with a template that isn’t made out of such malleable and elusive identifiers. But to reiterate, in my original OP, I believe I did a better job of that in using deafness, although I should have specified “profound deafness” was what I was describing in the examples I gave of never experiencing the beauty of music (and it wasn’t intended as a template, just a concrete example).
It has been my experience that people who talk about the “blessings” of their spectrum disorder (usually autism) are people privileged enough to have a good support network and a good environment. They’ve got parents who are kind and compassionate enough to tolerate their quirks, with incomes that enable innovative therapies, talent-development, passion-pursuit, and employment-through-connections. Like, I know a woman who has a son with high-functioning autism. She was able to get him a job at a camera shop through social connections. When he was eventually let go, no biggie. She was eventually able to find him a job doing something else. Through it all, his comfortable middle-class existence was maintained since he lived with her. Could be he’s one of these chaps you sometimes see online who play up the gifts of autism, since he lives in a context where those gifts are appreciated rather than stigmatized. But if he was forced to live on his own or if he had a family who was less enlightened and less socially connected, it is likely he would be more cognizant of his disabilities.
I have no doubt that autism can confer some gifts. But the value of those gifts must be compared with any associated disadvantages. If the latter outweigh the former, then yeah, we’re talking about someone with a disability.
I also think the desires of the individual need to be considered in the disability equation. I have Tourette’s disorder, and I don’t believe it has impaired or impeded me in any way. But I think this is due to the low priority I place on socializing. If I wanted to acquire a significant other, I probably would consider myself “challenged”, since weird tics and twitches are unattractive to most people. If I did have this desire, I would be pissed off if someone told me that my tic disorder is “neutral” since Tourette’s is a cosmetic issue. We live in a world where you can be discriminated against based on “cosmetics” , though. So of course it ain’t “neutral”.
I agree with most all of your post. In fact, I have a close friend who has a brother who is autistic. And he is absolutely a genius when it comes to understanding and utilizing computer science. It is truly astounding. You could give this guy your smartphone and he could do things to it that would enable functions that you would never even imagine were possible (and the manufacturer did not intend). He has an instinctual, intuitive understanding of the way computer technology works in a way that boggles my mind. No matter how you slice it, it’s a positive attribute to have.
All that being said, if you were to ask him what he wants more than anything in life, he’d say it’s to be normal, like his sister. He and his sister did not have good parenting nor a stable, comfortable upbringing (they were raised in poverty). His one-in-a-million talent can’t really ever serve him all that well anyway, because any potential utilization of that talent would be heavily offset by his other, numerous obstacles put in place by his autism. Interestingly enough, he is also hearing impaired. His parents never really considered one way or another whether to address the hearing impairment or not, so he was left to fend for himself on this issue. And it has sadly been much too long and painful a journey for him, as an adult, to try to navigate the health care system alone to find the best solution for himself. He’s tried hearing aides and found them unsatisfactory. After years of what should have taken weeks, he is on the path to being evaluated for cochlear implants.
However, in re the patient/person being the best judge of their potential disability, while I think that is true for the majority of cases, do you think it is always so? Does not desiring the aspects of life that are used to construct the criterion through which disability is understood and defined negate the disability? Or does it suggest a disability in it’s own right? I’m by no means asserting this, just posing the question. Your post was very thought-provoking. (FWIW, I think it’s not indictaive of a disability but it is an interesting question, at least imho).
One complicating factor is the difference between mental conditions and physical conditions. If someone is paraplegic, no one looks at them and says “well, gee, if you just tried harder then obviously you could get up and walk”, whereas if someone has crippling social anxiety, it’s easy to say “hey, why don’t you just try harder to go out and make friends”, or whatever.
My personal preference is the word “impaired” rather than “disabled.” Of course, I’m approaching it from a legal standpoint. I’ve worked in Soc Sec disability law for decades. Social Security’s definition of “disability” is vastly different from the ADA’s, and both differ from the VA’s…
The term “disability” has so many different definitions in so many different contexts, that it is hard for people to use it to converse meaningfully. I also encounter a fair number of people who use the term to excuse their shortcomings, or to suggest they are entitled in various ways. Just because someone chooses to call themselves disabled, has absolutely ZERO relevance to whether SS will agree.
Coupla semi random thoughts:
I have a lot of difficulty with many claims of mental/emotional impairment. I find it hard to distinguish between what is a diagnosable, treatable, compensable pathology, and what is within the normal range of emotions/personalities. Personality disorder is a frequent one. Funny that mental health professionals never seem to say, “This guy’s an asshole, w/ no work ethic.”
How do you account for “character” (the best word I’ve been able to come up with.) 2 people have identical diagnoses/clinical histories. One applies for disability benefits, and the other figures out how they can continue working - either with or without accommodations. Is it meaningful to refer to them both as “disabled”?
One of my kids in “on the spectrum.” Had an IEP thru school. He told me he NEVER refers to himself as such, because he’s sick and tired of encountering people w/ significantly less limitations than him, who use their diagnoses as an excuse. He’s an aeronautical engineer, getting married this fall, and publishing his first book over the winter. Yeah, some things are difficult for him, but I don’t see the sense in calling him “disabled.”
People will get upset about just about any chosen word. I remember us telling my MIL it was hard to have her in our home, because it was not handicapped accessible. (Stairs for the bathroom were difficult given her unsteadiness and O2 tank, not to mention her dementia.) She was irate. "Are you calling ME handicapped? No mom, that’s nicer than any word we’d use to describe you!
This is a staggeringly uninformed statement. Not only do individuals hold this belief, the notion is propagated by the popular media and movies all the damn time. Haven’t you ever heard the “inspirational stories” of those amazingly strong people who didnt listen when their doctors told them they would never walk again? And through a combination of superhuman willpower, a undying positive attitude and a belief in something, they were able to overcome their spinal cord injuries and WALK AGAIN! HALLELUJAH!!
There are so many factors tied into this concept. The most basic is one that I dont have a good answer for. It is the dilemma facing doctors when they are tasked with first delivering the stark news to the patient. Even at such very early stages, doctors are fairly, almost surely, confident in the ability of modern medicine to accurately diagnose the nature and extent of spinal cord injury and give a relatively on the nose prognosis. They also know, being doctors, that there always remains the chance of something escaping detection or developing after initial diagnosis, that alters (sometimes even radically) the state and course of the injury. However, considering the overwhelming unlikelihood of such an occurrence, the doctors dont want to instill a dangerous sense of false hope in a patient who has just had the most traumatic, life changing event occur in his life. So, they leave that unsaid, leaving such a infintesimal chance to happen as an unexpected, positive surprise, rather than a source of false hope from the outset that never materializes and wreaks havoc on the psyche and well-being of the patient who has had his/her life on hold waiting for something that was never coming.
This inevitably leads to the rare instance of patients who do ultimately recover, due to an initial misdiagnosis, as a result of initial cord swelling which in time abated or other aspects that have a very rational explanation. But all the patient themselves was told was they were never going to get out of the wheelchair. So when they begin to recover, the excitement builds and it motivates them to work at building on that recovery. Ultimately, when they do walk again, they understandably (given the newness and trauma of the injury they still deal with) attribute it to some inner strength they possess. On top of that, it ends up having the perverse affect of causing those of us who don’t hold on to such silly fantasies and actually love ourselves they way we are and proceed to get on with life with our injuries as the weak ones who have given up!. This comes, in part i believe, from the ignorant notion that life from the vantage point of a wheelchair is just fundamentally inhuman and a unbearable torture that no living soul should ever accept as long as they can draw air. Its why we get called “inspirational” just for being seen in public! As if they are so amazed I had the unending willpower to summon the strength to wrestle my self out of bed to face another day of hell on earth and propel my sack of dead flesh all the way to the corner market buy iced tea. I always want to say to these people, "look, i do do some inspirational shit. Buying toilet paper to wipe my ass ain’t it.
In my 18 years that ive lived with my spunal cord injury, Ive seen this phenomenon take place many, many times. It simultaneously saddens me, warms my heart and angers me. It saddens me because it fills all the many newly injured souls who read about this with a tragic sense of false hope. And false hope can be the difference between forging a meaningful life post-injury and staying forever stuck in the past. It warms my heart at the same time because I cant even begin to imagine the ecstacy and unbridled emotion that fills someone who beats the odds and recovers like that. I love seeing the face of someone who has the rare chance to experience such heavenly highs. The anger comes from those who’ve recovered who lecture others who have been injured that “you can be like me, if you never give up, never lose faith in god and never stop working”. I think to myself, “ok, this negates any heartwarming feeling I derived from your happiness, you smug bastard. You are actively helping to destroy these people’s lives, just so you can feel good about yourself” (because it usually always is one particular type of person who morphs from persomal happiness in recovery to evangelical spinal cord woo advocate.
But the real harm comes from the greater impact of popular media picking these stories up and exploiting them. This makes me see red. Countless movies, in theatres, made for tv and in television programming, all are guilty of using the same phony narrative of the inspirational story of the person who somehow used a superhuman willpower and an indomitable spirit to somehow use the power of the brain (with a little assist from the snowman in the sky) to heal and re-fuse their spinal cords. This is where the real damage is done. This helps to fuel ignorance and perpetuate and strengthen quasi-religious bigotry towards those with SCI (the abbreviation for the injury) as well as to make the incidemce of false hope widespread to near endemic proportions.
I think it just makes people more comfortable with us, tje spinal cord injured population, because it lessens the proximity of themselves to their own mortality to believe we have the power to overcome these tragedies, if we only have the moxie. Rationality be damned! This cognitive dissonance seems to exist solely in the sphere of spinal cord injury. What other irreversible physical condition do large swaths of the population believe can be cured woth willpower? Cancer? Type 1 diabetes? Scizophrenia? Amputation?? It is a remarkable feature of the human mind, in my opi ion.
Tl;dr. Paraplegics and quadriplegics absolutely do get told that they can, in effect, shake it off, as long as they work hard and believe hard enough. Media perpetuates this horrible attitude.
I lnow this is not what you meant but your post reminded me of a funny story about the nature of some of the aspects of the medical history paperwork i had to fill out when i became a patient at my neurological institute for migraines. Near the bottom of one of the forms, there was a question asking “Are you disabled” Which obviously I answered “yes”. The follow up question, however, threw me for a loop: “By whom?” "Wha?? Who disabled me? What kind of twisted question was this on a medical form? And what sort of disabled patients must they see here in order to make such a question standard? Well, the snarky side got the better of me and i wrote “God?”
I soon learned that they meant who diagnosed me as disabled. Ha. What a poorly worded question! And given how long ago my accident was, and all the ancillary injuries I also had, I was in no place to remember the name of the specific doctor or even team of doctors who made my diagnosis. I just told them the name of the hospital and they were satisfied with that. After all, no one was disputing the validity of my disability. Haha.
Yeah - or it could be what organization made the determination.
Another factor would whether the diagnosing doctor is a specialist as opposed to a GP? A treater?
I see a lot of vets who are irate that their VA rating does not entitle them to an additional Soc Sec payment (no set off between the 2 programs. In fact, 100% disabled vets are able to work.)
And so many doctors seem to think their opinion that, “Mr X is disabled.” means ANYTHING. No mention of any symptoms or functional limitations? No discussion of how those affect one within the workplace?
I think it ridiculous that a deaf person would bridle at the word “disabled” - especially if they wish any portion of society to make them any accommodation. But a real poser is trying to define what is “able.” How broad will we draw that before someone is “disabled”? Some people are athletic/others are klutzes. Some folk are nearsighted. Some are not too bright. And others are lazy assholes. And what makes a particular accommodation “reasonable.” From whose viewpoint.
It does not surprise me that people have different opinions. I’m not sure how far society can go to accommodate every person’s difference. At what point do you just say someone has to suck it up and figure out how to deal in a society that serves the vast majority of people?
A couple points I wanted to respond to: unfortunately I don’t think it makes most people comfortable with spinal cord injury at all. People are still twitchy and avoidant with the severely disabled in general, I think.
I also think that this idea that willpower can be applied to other forms of disease/impairment is definitely out there. The brave soul who “fights” against cancer and conquers it with willpower. There was that movie about the mathematician who controlled his schizophrenia without medication. It’s pervasive in some areas more than others, but we (society) definitely have this idea that willpower will somehow conquer the failings of the body and mind.
It’s insidious too. I have banged myself against it a time or two. Why can’t I just get better? Why doesn’t my brain and body work the way it used to? Relatively few times in 6 years, but it has happened. People expect it of me as well, particularly as my disability is invisible. “You’re not feeling well. Can’t you just suck it up and do this” is not an uncommon reaction among people who don’t have all the information.