Do You Struggle with Disability Blindness?

I have a disability, but it isn’t obvious. In fact, in order to see it, understand it, and especially to accept it as a legitimate disability requires some training, and most people currently lack such training. To the extent that a given person — yourself, for example — might lack such training, it could appear that I have no disability at all.

If, indeed, you are such a person, here I would like to suggest that your own inability to see my disability is equivalent to a genuine disability in and of itself, although one which can be corrected simply by training you well enough to see my disability.

We might call this kind of impairment Disability Blindness.[1]

My own disability is called Autism Spectrum Disorder (ASD, autism), and in my case at least it is so difficult to recognize as such, that most likely you wouldn’t see it even if you could observe me closely for 53 years, which is how old I was when I first got diagnosed. To exacerbate the problem, autism is fundamentally a communication disability — a fact which appears to contradict my well-developed writing and speaking abilities. A legitimate question for a skeptic to ask here would be, “How on Earth could someone who writes and speaks so well be said to have a communication disability?”

I know. It seems impossible. I, too, was skeptical at first, although not about my symptoms, of course, which are obvious to me and everyone who gets close enough to witness them, but rather about how best to explain those symptoms. And yet, believe it or not, and according to the experts who diagnosed me, those symptoms are best explained with a diagnosis of ASD.

Autism is not the only disability that can have the characteristic of being difficult to see without proper training. Pretty much any psychiatric disability (e.g. Bipolar Disorder, Anxiety, etc.) can have this attribute, as do a number of physical impairments such as chronic pain, chronic fatigue, and migraine headaches. It is common to refer to these difficult-to-observe disabilities as being “invisible”, but in my opinion this is a poor solution to the problem it’s supposed to solve because it suggests that these disabling conditions are somehow invisible even to those who struggle with them, or perhaps even to the medical experts who diagnose them. This, in turn, might suggest that these so-called “invisible” disabilities may not actually exist at all, and moreover that those who struggle with them are somehow only pretending to have the disabling condition, perhaps in order to manipulate the sympathies of others and to unfairly benefit from a public perception of being disabled.

To my view, a more elegant solution to the same problem is this idea of Disability Blindness, which can be seen to afflict a great many people and come in as many varieties as there are disabilities that are difficult to observe without adequate training. For additional examples, consider that many people lack the training required to detect heart murmurs, even with the help of a stethoscope. Many people lack the training required to detect emphysema, even with the help of a chest X-Ray. Multiple-sclerosis, diabetes, high-blood pressure — all of these disabilities and more can seem perfectly invisible to the untrained observer, as can Autism Spectrum Disorder — at least in my own case, although I suspect many other autistics will recognize this basic problem.

Please let me know in a comment below if you are such a person.

When reasoning about disabilities, it’s imperative to remember that having a disability is not equivalent to being disabled by it. Being nearsighted, for example, is really only disabling when the near-sighted person isn’t wearing corrective lenses. Leg paralysis is only disabling if the paralyzed person lacks the wheelchairs, ramps, automatic door openers, etc. required to enable mobility. Environmental factors (a.k.a. “accommodations”) such as the existence of corrective lenses, automatic door openers, etc. can make all the difference between whether or not someone who has some disabling condition is actually disabled by the impairment in question.

In my own case, and although I wouldn’t want to speak for all autistic people here, I can tell you that a major environmental factor that heavily impacts my own ability to function is whether the people I interact with struggle with this impairment I’m calling Disability Blindness, which is to say whether they have the training required to see for themselves that I am actually autistic. To the extent that they do have such training, then I function quite well — much as any near-sighted person would while wearing the right corrective lenses — but to the extent that they don’t, then I am actually quite vulnerable to becoming completely incapacitated — just like what happens to near-sighted people when they take off their glasses. In fact, in much the same way that it’s hazardous for near-sighted people to drive without their glasses, for me it’s actually hazardous to interact with people who are Disability Blind. The general rule here can be stated, thus:

I have a disability, but I am not really disabled by it unless you are prevented from seeing it by some sort of Disability Blindness.

Thanks for reading, and please let me know what you think in the comments below!

 


[1]I have also suggested this idea of Disability Blindness elsewhere. For example:

Also, for more on the idea of disability and especially autism as a disability, please see Autism Is a Disability; Penguins Can Fly.

 

 

I Think This Should Be A Word: Ignoranthropite

I like this word ignoranthropite, which appears to mean something like “a person who dwells in ignorance”. Of course, that’s pretty much all of us, and I don’t really see it as a synonym for being human, so what else might it mean?

As a rule I’m opposed to gratuitous ignorance-shaming. I strive to accept the fact that we are each of us more ignorant than knowledgeable, and I really think that of all the nasty ways to luck-shame someone, I think one of the nastiest is to shame someone for having failed to learn something yet. Examples of this sort of interpersonal cruelty abound:

  • You should know how to manage your own finances!
  • What? You mean you can’t even cook a souffle?
  • Don’t you know better than to give your credit card number to someone who just calls you up and asks for it?
  • You idiot!
  • You moron!
  • You dolt!
  • You’ve never read The Great Gatsby! Did you even finish high school?
  • Holy cow! When are you going to learn to drive?
  • This is America, dammit — speak Navaho!

So I wouldn’t want this neologism to become a term of insult or disparagement, which suggests it should refer to some sort of temporary status. It is simply a word meant to convey a particular way of being human under particular sorts of circumstances. More specifically, it should probably describe a particular way of being ignorant, until such ignorance has been replaced with a particular kind of  knowledge.

Perhaps this:

An ignoranthropite is a person who dwells for the time being in the specific and hopefully temporary ignorance of his or her own more general and utterly Human state of Ignorance.

In this sense, it appears to have an antonymous relationship to some kind of enlightenment. To the extent that enlightenment is an awareness of one’s own ignorance, then an ignoranthropite is one who has yet to achieve that type of enlightenment.

What do you think?

 

 

 

Am I Really Autistic? — Towards A Solution to Diagnosis Doubt, Part 1

It was only in November 2016 when I first got diagnosed with Autism Spectrum Disorder (“ASD”, “autism”), and even today I struggle to cope with a weird consequence of that event: my own diagnosis doubt or skepticism about my own ASD diagnosis.

This skepticism usually takes the form of two types of questions. First we have what we might call the “nice” questions, such as:

  • Am I really autistic?
  • Was I somehow misdiagnosed?
  • Did my doctor(s) maybe misread the evidence?
  • But I  have such a good sense of humor!
  • But I can detect and use irony and sarcasm with great subtlety and nuance!
  • Yes, I can be fiercely blunt, but it’s only an accident sometimes; for the most part I usually know when I’m being too blunt, and I only do it when the person really deserves it!
  • How come I have no serious sensory processing issues?
  • How come my memory isn’t that great?
  • What if I am autistic, but autism is not really what’s wrong with me?  What if my real problem is ADD or ADHD? Bipolar Disorder? Etc.

But then we have the “not nice” questions, for example:

  • What if I’m really just an asshole?
  • What if I’m just lazy and stupid?
  • What if I’m just a lazy and stupid asshole?
  • What if all I really need is more rejection?
  • What if all I really need is to be scowled at or scolded some more?
  • What if all I really need is to get fired again?
  • What if there’s really nothing wrong with me that can’t be fixed with a good beating or maybe some jail time?

In particular, I find these latter “not nice” questions to be most revealing. For one thing, they’re all very subjective, value laden, and context dependent. Also, they’re all based on an antiquated theory concerning the value of cruelty and coercion — the preposterous idea that punishment is somehow a performance enhancer. Really these “not nice” questions appear to be grounded in the sort of unscientific world views most commonly associated with laypersons, bigots and other ignoranthropites.

So why am I asking them? Well, how about because sometimes such ignoranthropites can become quite powerful and influential (e.g. our current President), and when they do they invariably abuse their power and influence to control access to certain resources, and I’m seriously worried that when I have to ask these people to provide said resources, they’re just going to start asking these kinds of questions, and if I am to have any reasonable chance of convincing them to share with me those resources, then in theory I need to be able to answer these questions in a way that satisfies their apparent curiosity. Therefore, it would appear that I am asking these questions not because I seriously believe them to be good questions, but because I’m worried I may actually have to answer them at some point even though they aren’t!

But is that even possible? I see good reason to doubt it. These are not typically the kinds of questions people ask in search of objective answers — those would be the “nice” questions in the first group above. Really the “not nice” questions are just empty rhetorical devices, and their only value is that they reveal the poser’s prejudiced answers: “you’re just an asshole”, “your just lazy and stupid”, “…need a good beating….”, etc. When a boss seriously wonders whether all you need is to be fired again, then he or she has surely already decided to fire you, and is just looking for the right excuse to do so.

I can see no good reason to prepare oneself to answer questions that aren’t actually questions to begin with. I do think some kind of preparation is needed, but it doesn’t involve answering any questions. Rather, I’m pretty sure that the best and really only way to prepare for these kinds of “not nice” questions is to train yourself not to need whatever resources you think you need and which are currently being held hostage by the potential posers of the “not nice” questions in question.

I’m pretty sure that no matter what you think you need, if it can only be obtained with the validation, approval or permission of an ignoranthropite, then you are probably much, much better off with out it.

To be continued…

[Note: when Part 2 is published, I’ll post a link to it here.]


Image Credit: Shutterstock

 

Welcome To My Own Little World: Autism And Delusions of Priority

Priority Delusions and Autistic Meltdown

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This picture represents what autistic meltdown is like for me — what I call my “thought-furnace”: the shuttle represents my thought(s), and the exhaust blast represents the furnace. The gist of the idea is that my thinking becomes intensely focused and goal directed, where the goal is to resolve the crisis that provoked the meltdown. Image Credit: Pixabay

As I’ve explained elsewhere, and again without pretending to speak for all autistic people, (for me, at least) autistic meltdown always begins when I perceive myself to be trapped in some sort of hopeless jam — a true, high-stakes, predicament or “rock-and-hard-place” kind of scenario; damned if I do, damned if I don’t; where all available options clearly lead to failure; when there appears to be absolutely nothing, nothing, I can do to avert some sort of disaster; where it really seems to me as though I am simply doomed sooner or later to endure some manner or other of harsh punishment. For me, that general kind of scenario is the ignition-switch to what I call my thought-furnace. The moment I perceive myself to be in that kind of situation, that’s when meltdown’s countdown ends and blast-off begins.

Colorful imagery aside, what happens next is that I begin to ruminate relentlessly about how to resolve the crisis at hand. In a sense I become quite delusional, actually. Not in the traditional sense like I believe I’m Napoleon or that random coincidences are messages from extraterrestrials — but with respect to my beliefs about what’s important. We might call these priority beliefs — beliefs about what takes priority over what, about what matters and what doesn’t. Basically, whenever I’m undergoing meltdown it’s like I believe with all my being that the absolutely most important thing I can do is find a workable solution to the predicament that provoked the meltdown. Nothing matters to me more than that. My whole world — the very meaning of my life — becomes about solving that and only that problem.

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For me at least, autistic meltdown happens mainly up in my head, where I become intensely fixated on figuring out what to do with some high-stakes, rock-and-hard-place dilemma. Image Credit: Pixabay

I say this is like being delusional because when it happens I seem to be the only person in the galaxy who really gets that the crisis at hand is in fact a genuine crisis, and especially to the point that I believe it to be a crisis. And I also seem to be the only person who believes that resolving the crisis is the most important use of my time and resources, and everyone else’s too. Furthermore, I am never able to persuade anybody else that I’m right about the significance of the crisis, and believe me I always try with great exuberance.

But my utter failure to convince anyone in no way changes my mind about the crisis or how important I think it is. I am definitely not one to just believe things because everybody else does. In that sense I’m a true “free thinker”, but with the result that my priority beliefs during meltdown appear to be quite stubbornly impervious to all evidence and argument, which is to say that they appear to be wholly unreasonable.

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This picture of a donkey standing alone in a field captures something of how I feel during meltdown, when my priorities become stubbornly rigid and incompatible with those of everyone else in my life. Image Credit: Pixabay.

I should clarify this: to my view these priority beliefs are absolutely not delusional in any sense. During meltdown, I definitely do not see myself as being out of touch with reality in any way. From my own perspective during these episodes, these beliefs actually do seem totally reasonable. Not only do they make perfect sense to me, but I am quite sure they would change in response to evidence. The problem is that the people who disagree with me and who try so hard to change my mind are simply unable to provide that evidence. They just seem to want me to believe them arbitrarily. But that makes me think they’re the crazy ones. How can they expect me to do that? Would they? But judging by their reactions to the kinds of decisions I might make during meltdown, it is quite clear to me that to them I seem like I’m the nutcase.

Priority Delusions and Autism-in-General

Another thing about meltdown for me is that it’s really just an especially extreme version of how I am even when I’m not having a meltdown. That is, autistic meltdown (for me) is not some extra way of being during which I am somehow “not myself”. Rather, for me meltdown is just an especially intense way of being how I am all the time. During meltdown I become very intensely fixated on one particular idea: how to cope with the particular rock-and-hard place crisis that provoked the meltdown. But the fact is that I am always more or less obsessed with something. It’s just that when I’m not having a meltdown, my faculties of attention become a lot more like binoculars that I can control and redirect at will.

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Even when I’m not having a meltdown, I am always more or less obsessed with something, but I have much more executive control over my attention. It becomes much more like binoculars that I can redirect as I wish. Image Credit: Pixabay

However, an actual meltdown episode is so very, very extreme for me, and so very much more problematic, that in my opinion it just makes sense to parse it out and talk about it as if it actually were some totally different way for me to be. And although I hope it’s useful to do that, in the end, during an episode of meltdown, I am still just me — me in crisis mode.

And even when I’m totally calm and comfortable with my world, my priority beliefs still seem quite delusional, in the sense described above. Even during these periods most of what I wrote above remains true, although in a far less intense and problematic way. Even when I’m not having meltdowns my judgments of what matters and what doesn’t are largely out of whack with what everybody else in my life seems to think. Although during these times in my life I might not seem like a total nutcase, nevertheless I am clearly still living in my own little world.

 


Image Credit (solitary man looking at mountains): Pixabay