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Old 09-16-2018, 07:36 PM
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What makes a condition a disability vs just a characteristic?

Given the recent debates that have surfaced in a few different threads re whether conditions such as autism and deafness truly pose enough of an obstacle to functionality and happiness to be considered disabilities, or whether they should be upheld as fundamental and unchangeable aspects of the person's unique identiy, I feel a separate thread is warranted.

What is a disability anyway? I'm not going to go and post dictionary definitions, I think we are all familiar enough with the term where such a move would be pedantic. But in one of the threads, the argument was made that "disability" was not an objective reality or truth but rather a product of a societal failure to recognize and accomodate the needs of those of us whose needs are divergent from those of the mainstream.

I find this argument laughably, woefully incomplete and ignorant. Society has no culpability in the heartbreaking, impenetrable chasm felt by a parent trying to bond with their (very low-functioning) autistic toddler. Society also has no culpability in the inability of the paraplegic/quadriplegic to control their bowels and bladder. Just as society has no culpability in the inability of a blind man to drive on the interstate. I could go on but the point is to blame society for the objective truths of disabilities is wrong and an extreme overreach.

Society does have a role in mitigation of those objective truths however. To what extent a society does or doesn't recognize the needs and autonomy of the disabled definitely exacerbates or mitigates those realities but it doesn't create them. And in the broad scope, big picture, society is moving, and has been moving, further and further in the right direction re recognizing the needs and autonomy of all the various manifestations of disability.

But conditions that pose significant obstacles, both intrinsic and extrinsic in nature, to achieving life goals taken for granted by many who have no such obstacles in their lives, is what all disabilities share. Intrinsic obstacles are inherent limitations imposed by the disability itself, regardless of the nature of the society in which it exists. Extrinsic obstacles are those posed by integration of those intrinsic limitations with a society that is to a varied degree not eqipped for them.

How is lacking one of the basic senses, namely hearing, not considered a disability? I completely understand not considering the disability a "lessening" of the person with it but in addition to the functional impairment of such a condition, look at what an enormous element of human and cultural expression and experience is missed by the deaf by never experiencing music. Or the blind never experiencing visual arts.

I think the idea, often fiercely defended, that certain disabilities arent actually disabilities at all but rather innate aspects of a person's being that should be celebrated (or at least not considered a liability) is understandable. Understandable but misguided, that is. Misguided because I think it is a response to social marginalization, or extrinsic obstacles, at the expense of addressing the intrinsic limitations that are the source of social response or lack thereof in the first place.

I apologize for the long-winded, rambling nature of this OP. I am stopping now even tho I feel like there is much more to say. I just feel like I am bordering on incoherence, being all over the place as I've been. Hopefully I make some semblance of sense, despite my lack of clarity.

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Old 09-16-2018, 07:47 PM
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Old 09-16-2018, 08:09 PM
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Couldn't it be both? If you have a from birth disability wouldn't it become ingrained in your character? As in; you are you, your disability is part of you. You know no difference and your peeps know you as such. Of course, it's not all of you. Mental disability may be all of you more than a physical impairment. If you are born blind you will have a different perspective that a sighted person becoming blind later in life. That's all I am saying.

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Old 09-16-2018, 08:20 PM
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Ambivalid one thing I run across is a conflation of the idea of the disability as an obstacle versus the idea of a disability as the a decrease of the value of a person. As if somehow, the proclamation or acceptance of a disability means that an individual is less worthy than other people. I don't know if this is tied into a religious sub-text that lingers in society - God's Judgement if you will - or if people just find the language ugly and react to it without thinking about what it means fully.

I, myself, then try to distinguish between disability as a barrier or difficulty, versus disability as a value statement.
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Old 09-16-2018, 08:37 PM
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Ambivalid one thing I run across is a conflation of the idea of the disability as an obstacle versus the idea of a disability as the a decrease of the value of a person. As if somehow, the proclamation or acceptance of a disability means that an individual is less worthy than other people. I don't know if this is tied into a religious sub-text that lingers in society - God's Judgement if you will - or if people just find the language ugly and react to it without thinking about what it means fully.

I, myself, then try to distinguish between disability as a barrier or difficulty, versus disability as a value statement.
Yes, I think this is exactly it. The strong-willed declarations that certain conditions are NOT disabilities stem from this conflation, which is often so socially ingrained that the conflation is made subconsciously. It's why such themes as a "strong will" are portrayed in our media as all it takes to overcome disabilities like spinal cord injuries. The repercussions of such messages are myriad and insidious.
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Old 09-16-2018, 08:57 PM
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"Disability" as a value statement seems to be a very common understanding of the term. Since disability means social demotion and lost value, it's no surprise that the Deaf Community doesn't see themselves as disabled. Or that society and media pushes the narrative that to overcome/avoid this "lessening of value", one must exhibit traits that exemplify exceptional social value (perseverance, work ethic, optimism, etc). If you aren't actually a "lesser being", then you can overcome your spinal cord injury with hard work. Or show that you function with your deafness just as fully and and independently as anyone else. Etc. The point is, only the sub-standard are "disabled".

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Old 09-16-2018, 09:52 PM
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A disability is a difference that leads to signifiant functional handicap within the environment we must function.

So sure, to some degree the solution to something labeled a disability is to change the environment that we must function in to the degree that the difference no longer results in a significant functional handicap with the relevant environment.

I am using the word "handicap" here with intention and in contrast to my first impulse of "impairment." One may, through great effort, not have any impairment relative to an average typical someone without the difference in question, but clearly that extra great effort represents the handicap the individual has (compared to the relative head start the more typical person has).

But I do think that that is part of where the bit you observe comes from - the idea that with changes in the shared environment and with great effort a person with the difference in question does not need have performance impaired to the more typical, and the desire to promote both of those to the greatest extent possible.

Such non-impaired performance should not however be taken to mean that there is no handicap nor disability. Moreover the greatest extent possible will only go so far.
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Old 09-16-2018, 10:06 PM
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An individual with a disability is defined by the ADA as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment.
From A Guide to Disability Rights Laws.
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Old 09-17-2018, 04:04 AM
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Everybody goes through moments when we find ourselves encountering an obstacle which:
1) is linked to our physical characteristics (this includes brain structure),
2) would not occur, or be as large, on a person of certain different characteristics,
3) does not in any way impact our worth as a human being,
and 4) is temporary or at least short-lived.

For example, yesterday I was doing some work in my kitchen; for most of it, I either stood on the floor or on a step stool, but at one point I needed to go get the really-tall-ladder. My 5'4" was an obstacle for reaching the spot I needed, one short-lived and which wouldn't have affected people of greater height such as my 5'10" brothers. Someone much shorter would have needed to use the ladder a lot more; there are situations where they would need some accomodations made (for example, lowering the high knob in those British doors which can only be opened by turning two knobs simultaneously).

To me, a disability is something whose only difference with the first list is that it's
4') permanent.

While accomodations can be made (ladders can be made available, high knobs can be lowered), someone who has a disability is living in a world whose default values, objects and procedures do not take them into account; they're permanent outliers. Depending on the disability and the specific situation, the solution will be different: most wheelchair users wouldn't have been helped by a ladder, they would have needed someone to "be their hands" for a while. As a society we have the collective duty to make accomodations available, but that requires accepting that there is a need. If someone who would be perceived by others as disabled doesn't consider himself so, be my guest, but don't then ask for accomodations.

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Old 09-17-2018, 06:00 AM
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Old 09-17-2018, 06:06 AM
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It depends more on sociological context than most realize. You cannot pin down pat answers to this because of context differences and how complicated it is to define them. (And we should respect some individuals need more help than others to adapt to a limitation.) But it's obviously going too far to reduce all to a social model of disability.

If I had an undiagnosed communication disability that inhibited me from the ability to cheat, and I lived in a society where cheating was extremely common as means to get by, then what? This is a frustration some people feel.
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Old 09-17-2018, 07:30 AM
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I got a look at disability from the other side of the fence a couple of years ago. This was when there was a bunch of articles published in various papers and websites about research into "aphantasia" - the lack of ability to see visual imagery in your imagination.

As it happens, I myself don't see visual imagery in my imagination, and it hadn't particularly occurred to me that other people actually literally did. And I found the 'disability discourse' - the fact that my normal and, to me unexceptional way of thinking was being dissected and spoken of as some sort of lack or handicap - unexpectedly infuriating. So now I have a lot more sympathy for people in, say, the Deaf community, who insist that 'difference is not disability'. Nobody wants to be pitied. And people are not all that good at figuring out which aspects of a condition are actually the hampering ones, and which are no big deal.

In the case of autism specifically (my son has a diagnosis too) it's even harder to work out where the disability line ought to be drawn, not only because there's so much variation between different autistic people, but because some of the autism characteristics are, honest to God, not actual deficits. Hyperfocus, for one. The ability to concentrate on one thing for very long stretches of time might under some circumstances make your life harder - but it's not the lack of an ability to do something. Under some circumstances, it's a useful ability. Sensory hypo- or hyper-sensitivity is similar - what's the 'right' amount of sensory sensitivity is quite environment-dependant, and it's hard to argue that a particular level is 'right' - though as you get more extreme, it becomes harder to find an environment that your sensitivity level will work for.

I don't currently think of the Small Boy as 'disabled'. He's worse at some things than most people I know, and better at other things.

On the other hand, many of the kids I used to work with in computer class I would - because not only were they finding it hard to live in this society, it was hard to think of any environment in the actual real world that they would more successfully adapt to than a neurotypical person.
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Old 09-17-2018, 07:45 AM
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Nobody wants to be pitied.
I think that's the crux of the issue. I don't consider disabled people "inferior", and I certainly don't pity them. Sympathize, yes, but pity? The thought never occurred to me. Everyone has problems. Some people have bigger problems than others, that's all. You don't have to let your problems define you - but you also shouldn't pretend the problems don't exist.
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Old 09-17-2018, 10:25 AM
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I think there's some gray area; taking what Nava said about being short and extending it a little, I come to my own mother, who is 4'11". She does have fairly serious issues getting at things that aren't under about 6' above ground. She has stools, grabber-devices, etc... that help her get at stuff in high cabinets.

Nobody in their right mind would call her disabled though; she's just very short. But where do you draw that line when it comes to say... workplace accommodations? Six inches shorter? Is it a functional definition?

But making it a situation where the mentality is that people are different, not disabled kind of thing, is not really productive either- non-disabled people need to recognize that there are severe functional limitations for some people, and be both cognizant and willing to work with/around those limitations.

I think if it's just presented as "different", you end up with people making the assumption that it's literally just different, like having one blue and one brown eye, or that you're a pescatarian, instead of recognizing that it's something that actually limits someone's ability to function like most other people in some way, and that they need to be more aware of that.
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Old 09-17-2018, 10:54 AM
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I think there's some gray area; taking what Nava said about being short and extending it a little, I come to my own mother, who is 4'11". She does have fairly serious issues getting at things that aren't under about 6' above ground. She has stools, grabber-devices, etc... that help her get at stuff in high cabinets.

Nobody in their right mind would call her disabled though; she's just very short. But where do you draw that line when it comes to say... workplace accommodations? Six inches shorter? Is it a functional definition?
The legal definitions tend to be largely functional, that's why you can have someone be disabled for certain jobs but not others and why legal systems consider different levels of disability. I had a coworker with some sort of bone condition which made it impossible for him to hold any jobs that needed heavy lifting or delicate manipulation; if it had any effect on his programming skills it was a positive one, from the need to constantly solve problems that for other people do not exist.

I say "largely functional" because there are other cases that look at whether someone may need levels of care considered special; for example, military rules tend to consider that conditions such as psoriasis are "disabling" when it comes to deciding whether you can enlist.
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Old 09-17-2018, 12:02 PM
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Is being allergic to peanuts a disability?
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Old 09-17-2018, 01:53 PM
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Is being allergic to peanuts a disability?
A minor one.
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Old 09-17-2018, 01:59 PM
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Is being allergic to peanuts a disability?
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A minor one.
Why? Isn't it (when things are done correctly) mainly disruptive for everyone else?

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Old 09-17-2018, 04:59 PM
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Why? Isn't it (when things are done correctly) mainly disruptive for everyone else?
No. If, for instance, we all decided to stop driving cars in cities so as not to risk the blind, blindness would still be a disability. Disability is a matter of "can't", not "won't". People with peanut allergy can't eat peanuts without dying; others around them won't eat peanuts so as not to risk harming them.
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Old 09-17-2018, 05:07 PM
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No. If, for instance, we all decided to stop driving cars in cities so as not to risk the blind, blindness would still be a disability. Disability is a matter of "can't", not "won't". People with peanut allergy can't eat peanuts without dying; others around them won't eat peanuts so as not to risk harming them.
You (personally) can't eat cyanide without dying - isn't that a disability then? Or is it a non-issue so long as you avoid eating cyanide? Isn't it exactly the same with the peanuts, just not for everyone?
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Old 09-17-2018, 05:45 PM
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If most humans could digest cyanide, and I couldn't, then yes, it would be a disability.

Look at it this way: if we were to travel 10,000 years to the future to a world populated by our genetically-improved post-human descendants, you and I would both be functionally disabled.

Of course, if the world 10,000 years to the future is populated by degenerate post-apocalyptic mutants, we'd both be gods.
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Old 09-17-2018, 05:53 PM
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So, just being other than average is a disability?

I'm a really slow runner.
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Old 09-17-2018, 06:18 PM
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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.
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Old 09-17-2018, 10:24 PM
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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.
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Old 09-18-2018, 12:32 AM
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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.

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Old 09-18-2018, 12:46 AM
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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.
I agree. I share that minor disability.

I also make puns excessively. People notice. People make allowances for the fact that I may occasionally interrupt with one. Is that a disability, or just a strange characteristic?

I think there are a lot of just strange characteristics getting called "disability".
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Old 09-18-2018, 01:01 AM
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I also make puns excessively. People notice. People make allowances for the fact that I may occasionally interrupt with one. Is that a disability, or just a strange characteristic?
You aren't compelled to make these puns. Being compelled to interrupt with abrupt words/phrases is, in part at least, a disability, namely Tourettes Syndrome.
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Old 09-18-2018, 01:37 AM
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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"
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Old 09-18-2018, 02:13 AM
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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?
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Old 09-18-2018, 02:21 AM
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I think there are a lot of just strange characteristics getting called "disability".
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).
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Old 09-18-2018, 04:43 AM
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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?
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"

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Old 09-18-2018, 05:30 AM
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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).

Last edited by Ambivalid; 09-18-2018 at 05:32 AM.
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Old 09-18-2018, 07:08 AM
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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".
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".
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Old 09-18-2018, 07:49 AM
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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).
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Old 09-18-2018, 02:25 PM
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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.
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Old 09-18-2018, 03:29 PM
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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!
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  #37  
Old 09-18-2018, 04:33 PM
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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"
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.

Last edited by Ambivalid; 09-18-2018 at 04:36 PM.
  #38  
Old 09-18-2018, 04:54 PM
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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 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.
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Old 09-18-2018, 05:42 PM
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I lnow this is not what you meant but ...
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?
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Old 09-18-2018, 06:14 PM
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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!!

[...]

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.
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.
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Old 09-18-2018, 06:17 PM
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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).
Good question. No, I don't think the individual is the best judge. Mentally ill people are often robbed of insight, so I would not necessarily trust a severely mentally ill person's judgment about how un-debilitated they are. There are also people who think they are disabled just because they have limited ability in a very narrow area. I think individual's judgment should be considered, but I don't think they should have the final say.

I guess what I wanted to get at it in my earlier post is that what can be "neutral" for one person can actually be emotionally burdensome for someone else.
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Old 09-18-2018, 06:20 PM
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[...] 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?
This is valid. For one thing, I don't think my disability could be fully accommodated. If society were to try and make me comfortable, the entire world would have to re-arrange itself to suit me, which is nonsense.
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Old 09-18-2018, 06:41 PM
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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.
Ok, I can acknowledge overstating the exclusive nature of this unfortunate social phenomenon to SCI. However, with the groundwork that I laid out for it's genesis, would you disagree that it is more ubiquitous with SCI that with other dibilitating conditions? I can quickly find numerous examples to share that show exactly what I am talking about, both on an individual level and on a society-wide level. Now it maybe be a case of cognitive bias, but I don't recall seeing television or movies that hailed the inspirational triumph of cancer patients who single-handedly beat their cancers into final remission thru force of will, in stark contrast to the prognosis of all the experts.

Also, since many SCIs involve younger people sustaining their injuries engaging in reckless, dangerous, irresponsible or even criminal behaviors, there tends to be a Puritanical streak among elements of our society (even here on this board) who, to varying degrees, believe the person deserves their injury due to the immoral/unethical behavior that caused the injury in the first place. Its more prominent with certain conservative religious types but it exists in pockets in all areas.

Last edited by Ambivalid; 09-18-2018 at 06:44 PM.
  #44  
Old 09-18-2018, 06:50 PM
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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.
People also think that if there's a medical treatment for a condition, that means the condition isn't all that bad and thus the sufferer lose the right to ever claim it as a disability.

For this assumption to be valid, the following must be always true.

- The side effects from the medical treatment aren't more debilitating than the condition
- The sufferer can afford the medical treatment and can easily access it
- The medical treatment is effective enough for the sufferer for it to be worth the costs of acquiring it
- The medical treatment is effective enough for the sufferer to no longer be disabled
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Old 09-18-2018, 06:52 PM
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Ok, I can acknowledge overstating the exclusive nature of this unfortunate social phenomenon to SCI. However, with the groundwork that I laid out for it's genesis, would you disagree that it is more ubiquitous with SCI that with other dibilitating conditions? I can quickly find numerous examples to share that show exactly what I am talking about, both on an individual level and on a society-wide level. Now it maybe be a case of cognitive bias, but I don't recall seeing television or movies that hailed the inspirational triumph of cancer patients who single-handedly beat their cancers into final remission thru force of will, in stark contrast to the prognosis of all the experts.

Also, since many SCIs involve younger people sustaining their injuries engaging in reckless, dangerous, irresponsible or even criminal behaviors, there tends to be a Puritanical streak among elements of our society (even here on this board) who, to varying degrees, believe the person deserves their injury due to the immoral/unethical behavior that caused the injury in the first place. Its more prominent with certain conservative religious types but it exists in pockets in all areas.
I think I remember some cancer ones, but like you say it may be because those are the ones that stick in my mind. It's not worth quibbling about. The bias is definitely there. Through willpower, fighting spirit, and the almighty (praise be!), you shall walk! (Walking yet?)
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Old 09-18-2018, 06:58 PM
DavidwithanR DavidwithanR is offline
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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'm not interested in the people who dishonestly try to "spin" problems to sound like "blessings". They're trying to console themselves by playing pretend.

If my needs inconvenience others, but when my needs are met I'm perfectly fine, am I disabled?

I recognize that personally I AM disabled, though exactly to what degree is a confusing analysis. But I don't believe that having inconvenient needs qualifies in any form as a disability.
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Old 09-18-2018, 07:13 PM
DavidwithanR DavidwithanR is offline
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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?
"Able" is not a difficult question at all, just a silly one. "Able to do WHAT" is the problem. Very much like the idea of "physical fitness", which is nonsense until you explain physically fit for exactly what. Being able and being fit are meaningless until the specific capabilities or tasks are identified.

If I ask "Are you reasonably fit?" and you say "Yes", and I ask you well then how many times in a row can you lift 200 pounds over your head, you'll likely say that's not what you meant. In that example, the answer was foolishly given; the question was nonsense, and the only sensible way to answer is to request clarification.
  #48  
Old 09-18-2018, 07:16 PM
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Ambivalid Ambivalid is offline
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I think I remember some cancer ones, but like you say it may be because those are the ones that stick in my mind. It's not worth quibbling about. The bias is definitely there. Through willpower, fighting spirit, and the almighty (praise be!), you shall walk! (Walking yet?)
Nah. Im one of the undeserving ones. Ya know, my paucity of character and all. Plus it turns out I've been praying to the wrong God all this time. Santa don't doesnt leave those kinds of presents under the tree. No matter how many fucking Entemanns you leave. And fuck that other God too. You chose to allow me to become injured? And then decided I didn't "qualify for salvation"? Or you were punishing me for my errant ways? Well fuck, where's that Lucifer fellow at? I think ill start praying to the roaring lion. Cant be any more of a dick than that "God full of compassion" Ha!
  #49  
Old 09-18-2018, 07:31 PM
Dinsdale Dinsdale is offline
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"Able" is not a difficult question at all, just a silly one. "Able to do WHAT" is the problem. ...

If I ask "Are you reasonably fit?" and you say "Yes", and I ask you well then how many times in a row can you lift 200 pounds over your head, you'll likely say that's not what you meant. ....
I disagree. I doubt many folk would equate "reasonable fitness" w/ pressing 200# overhead. You can make assumptions based on the human physique. There is a reason stair risers and treads have standard dimensions.

Able to do what? function in society w/o requiring special accommodations.

And since I brought up vets, I ought to mention my favorite abused malady - PTSD!
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  #50  
Old 09-18-2018, 07:34 PM
MaxTheVool MaxTheVool is offline
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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!!
.
Interesting. I wonder if people who are (fully) blind are told that if they just have enough willpower, they will be able to see again. I find it hard to imagine that happening, but then, I clearly vastly underestimated the number of people who would react similarly to someone in a wheelchair.
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