‘If I Can’t See It, I Don’t Have to Pay for It’: Towards a Theory of Disability Blindness

Introduction

Here I would like to present two potentially useful insights into the general problem of so-called “invisible” disabilities, by which I mean any number of potentially disabling conditions all of which have the common characteristic of being more or less difficult to see, understand, and accept as legitimate by anyone lacking the often specialized and/or up-to-date training required to diagnose them directly. Depending on the disability, this can include not just family members, friends, and co-workers, but even medical health professionals, including doctors whose experience and expertise lay in domains that aren’t directly relevant to the disability in question.

Such disabling conditions may include,

“…debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences and mental health disorders, as well as hearing and vision impairments. These are not always obvious to the onlooker, but can sometimes or always limit daily activities, range from mild challenges to severe limitations, and vary from person to person.” (The Invisible Disabilities AssociationHow Do You Define Invisible Disability?)

Me and My “Invisible” Autism

For an example from my own life, since childhood I have struggled chronically for rational control over my own attention, striven excessively to organize my entire life around strict rituals and routines, and more or less botched up every interpersonal relationship I’ve ever had at home, school, or work. But it wasn’t until November 2016, just after my 53rd birthday, that I was properly diagnosed with the Autism Spectrum Disorder that best explains this particular triad of symptoms.

Now, one would think that such a diagnosis could only be a good thing, and I sincerely believe that in the long run it will turn out to be. The short run, however, has been a mixed bag. On the upside I finally have proper medical and therapeutic support, and at least the most important members of my family have come to embrace my diagnosis as a fulfilling source of answers to questions like “Whoa, what is up with him?” and “Why the Hell did he do that?

But I regret to say that the reaction of many has been less than sympathetic. Although much of this unsympathetic feedback is unspoken and revealed passively aggressively, at least a few hardy free-thinkers have been bluntly honest and highly articulate in their antipathy towards me. For example, consider these highly critical comments from one reader:

“…You’re not disabled. You’re just obsessed and angry…You’re a complete fraud. It’s my opinion whether you like it or not…someone with your intellect can easily research a psychological condition, go to a doctor, tell them what they want to hear listen to your tall tales of misfortune and assign you a diagnosis….”[1]

Or this one:

“You’re a sad little man playing the victim card while continually breaking rules you don’t like. Seriously, grow up.”[2]

Or this blurb (note the sadism of the final line):

“This blog is a testimony to someone who’s only ailments are selfcenterness, selfishness and greed. With the amount of energy and time you have put into this thing you could have already had another job for months. If you really have autism why don’t you blog about your search for a new job with your supposed ailment. I doubt you will though because that would be constructive and helpful to people with autism. Unfortunately the only thing readers have to look forward to is an awkward 3 month break in posts followed by a new entry about how your butthole hurts because you got your $hit puuuuussshed Innnn while in Prison….”[3]

But perhaps the most spectacular manifestation of this brand of hostility can be seen in the relentless and ongoing attempts by roughly a dozen individuals — mostly MetLife employees — to punish me for (what they must imagine to be my) pretending to have a disability and attempting to exploit public sympathy for my own selfish gain.[4]

Not that any of my former colleagues has accused me out loud of such fraudulent behavior, but at this point I think that is the hypothesis most likely to explain their collective and vindictive behavior toward me. These people can’t all be sociopaths, and if they sincerely believed me to have a legitimate disability I’m sure their behavior would have been very different. No, the most likely reason for their numerous and ongoing attempts to punish me is that they think I’m only faking my disability and that therefore I deserve to be punished.

Two Main Insights

I have thought a great deal about this whole situation and written quite a bit about it on this blog already, but here I wish to summarize my two main insights into the general problem. The first one is that these very angry but surely otherwise good people simply lack the training they would need in order to see, understand, and accept for themselves my Autism Spectrum Disorder as a legitimate disability. Because they lack this training, it really appears to them that I don’t have any disability at all, and so the obvious conclusion for them is that I must be faking it.

Although in such situations it is popular to reference the idea of an “invisible” disability, I believe this approach unfairly lays the burden of proof on the person with the so-called “invisible” disability, while lending an unearned legitimacy to anyone, e.g. a Disability Insurance company, who stands to profit or otherwise benefit from not seeing the given disability.

In order to solve these problems, elsewhere I have suggested the idea of Disability Blindness, which explicitly  acknowledges the objective possibility that, for example, a failure by Jones to see Smith’s disability might very well result from the fact that Jones simply lacks the training he would require to see it. This perspective at once shifts the burden of proof off of Smith and onto Jones, while demanding that Jones earn his legitimacy by acquiring the proper training. For a demonstration of how I have used this strategy to respond to one of my own harshest critics, please see the following 3-part series of blog posts:

  1. Am I Really Pretending to Be Disabled, Or Are You Just Pretending Not to See My Disability? An Open Letter to a Disability Claims Investigator, Part 1
  2. Am I Really Pretending to Be Disabled, Or Are You Just Pretending Not to See My Disability? An Open Letter to a Disability Claims Investigator, Part 2
  3. Am I Really Pretending to Be Disabled, Or Are You Just Pretending Not to See My Disability? An Open Letter to a Disability Claims Investigator, Part 3

The second main insight is that such Disability Blindness can actually be quite beneficial for some people, even profitable, and that for anyone who stands to profit or benefit in some way from being unable to see certain kinds of disabilities, such a person will tend to stubbornly resist the training he or she needs in order to see, understand and accept them them as legitimate. He or she will resist the training so as not to lose the profit/benefit.

This second insight can actually be expressed as a psychological law:

A Fundamental Law of Disability-Blindness

Given some disability that cannot be easily seen, understood, and accepted as legitimate without adequate training (e.g. psychiatric disabilities, chronic pain, etc.), a given layperson (one lacking such training) will nonetheless be able to see, understand, and accept the disability as legitimate to the extent that the disability doesn’t threaten to burden or inconvenience the layperson in any significant way.

Also, to the extent that the layperson perceives that he or she may be burdened or inconvenienced in some way by the disability in question, said layperson will resist the training and continue to find it difficult to see, understand, and accept the disability as legitimate, and this so as to escape the perceived burden or inconvenience.

Conclusion

All disabilities pose challenges to those who have them, but when a given disability can only be detected by people with specialized training, everyone else may succumb to the illusion that the disability is non-existent and conclude that the person with the disability is faking and attempting to exploit public sympathy for private gain. This illusion of cheating can give rise to hostility that may be expressed either covertly or overtly toward the person with the disability, thus greatly exacerbating the basic challenges associated with the disability.

In such situations, it becomes essential to understand the underlying psychological forces that are driving this hostility in order to find positive and constructive ways to cope with it. The insight, first, that the alleged “invisibility” of the disability may be due entirely to a correctable lack of training on the part of the layperson, and second, that the layperson may stand to lose profit or other benefit by acquiring such training can go a long way toward creating that essential understanding.

Of course, the above is not offered as any sort of exhaustive theory of Disability Blindness, but I’m hoping it’s a useful contribution to such a theory. I invite you to offer any thoughts, ideas, or feedback which may help to elaborate and complete the theory in a comment below.

Thanks for reading!


[1] For background and context see Hate Mail from That Disability Claims Investigator, Part 1.

[2]For background and context see Anonymous Guest-Blogger or Annoying Troll, Part 1: Who Is ‘Sulla Felix’?

[3]This bit of sadistic nonsense was left by an anonymous reader on my post Warning: This Blog Just Might Scare The Shit out of You.

[4]To summarize briefly: first these individuals unlawfully resisted my requests for reasonable accommodation of my disability, taking 7 months to revise a 1 page document granting my request (which was still wrong); then they fired me unlawfully because I filed a first complaint with the Equal Employment Opportunity Commission (EEOC) for resisting my requests for reasonable accommodation; then they lied to the EEOC about why they fired me, giving the EEOC an excuse to drop the investigation of my second complaint against the company; then they tried to buy my permission to use their psychologically brutal tactics on others (I call the ensemble of these tactics The MetLife Meat Grinder); and now they’re fixing to send me to jail because I staged a one-man, totally non-violent, civilly disobedient protest at their campus in Cary, NC in order (among other things) to raise public awareness of The MetLife Meat Grinder.

For a more complete understanding, see, for example:

  1. The MetLife Meat Grinder: A Significant Public Health Concern
  2. The Morally Mature, Civic-Minded, Grown-Up Thing to Do: Yet, Another Open Letter to the Mysterious Mr. Phicks
  3. Is MetLife’s Code of Conduct Recklessly Incoherent Bullshit? — An Open Letter to MetLife CEO Steven A. Kandarian
  4. An Open Letter to A Certain EEOC Deputy District Director.
  5. I Was Gang-Raped by MetLife Employees: Another Open Letter to the People of Earth.

 

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.

 

 

Agenda: A First Open Letter to the Mysterious Mr. Phicks

Hello Mr. Phicks,

mr_phicks_smoking_315x210

Even though it makes it seem cool, this is not intended as an endorsement of smoking. Nor is it a picture of the mysterious Mr. Phicks. Image Credit: Pixabay

Thank you for accepting to continue our conversation later this morning. I realize that now that I’ve given back your client’s laptop, this is all basically volunteer work for you, so I want to do want I can to make it worth your while. Toward that end I will sketch out here an agenda for our meeting, although I hope you will see this purely as a recommendation and feel free to modify it or even just to set it aside in favor of other discussion points that may be more important for you.

  1. For training and quality assurance purposes, I would like to record our conversation and possibly to post either the whole recording or segments of it on my personal blog at autistickish.com. I also wish to write about our conversation and to post what I write there as well. I believe our conversation presents a valuable learning opportunity, not just for the two of us, but for others as well, and I would like to make this opportunity publicly available to others. Please let me know if you have any questions, concerns or reservations about my doing this. In order to protect your anonymity (if such a thing is necessary), I have assigned you the pseudonym “Mr. Phicks” and will refer to you as such during our conversation and in my writing.
  2. I’m attaching two documents which I hope to discuss with you. The first is the EEOC mediation agreement I signed on April 24, 2017 alongside MetLife’s contracted Seyfarth Shaw attorney Frederick “Fritz” T. Smith; and the second is the Settlement Agreement that MetLife has asked me to sign last March, 2018 in exchange for $37,000.00. Please note that I have not yet signed the settlement agreement or received any money from MetLife.
  3. Please note as well that in the EEOC mediation agreement MetLife makes at least the following two promises which remain unfulfilled due to the fact that the company fired me for being autistic before they had a chance to fulfill them:
    1. That I would be assigned a new role within 1 to 3 months;
    2. That MetLife would work with my Autism specialist to determine the correct Reasonable Accommodations I needed in order to be successful at my job.
mr_phicks_looking_at_watch_315x210

I know Mr. Phicks is a busy man, but this is not a picture of him looking at his watch. Image Credit: Pixabay

My hope is that the above 3 items will provide us both with plenty of opportunity for an illuminating exchange, but please feel free to suggests other topics you might wish to cover.

I look forward to speaking with you.

Best,

Daniel L. Scholten, a.k.a. “The Walrus”

 

 


Image Credit: (embedded brick statue) Pixabay.

 

 

 

 

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

 

The Zipper Merge

I just came across this video. For years I have been “that guy” who actually drives the full length of the remaining available right lane before merging into the left. I’ve never been able to articulate why this is actually the correct and polite thing to do, but this video does a great job.

Or Should I Say: Autism Is Like When Your Car’s Steering Wheel Is Perfectly Balanced, And All The Roads Are Curved…

…and whether the roads curve a little or a lot, you must always adjust for their curvature, and nobody should be shocked if sooner or later you land in a ditch.

Sincere Apologies For Yesterday’s Ableist Version

I wish to apologize for yesterday’s ableist version of this post, which by  putting the source of the need for adjustment in the “unbalanced steering wheel”, suggested implicitly that there’s something wrong with being autistic. Although I must admit that I was aware of the problem even when I posted it yesterday, I’m frankly so enamored with the analogy, and believe it to be so useful that I thought it was worth posting anyway.

In any case, I hope you will agree that today’s version of this analogy actually does a much better job at what it’s supposed to do — illustrating some core and problematic issues with autism (it’s is only a “problem” because all of the roads are curved), while simultaneously pointing toward effective solutions (i.e. straight roads!) , and it does so without the implicit ableism.

However, I’m not going to take down yesterday’s post, because I think that a comparison of the two does a nice job of illustrating some core issues with ableism. I will, however, add a disclaimer to that post.

I sincerely beg your pardon for my confusion.

🙂

Autism Is Like When Your Car Has An Unbalanced Steering Wheel…

…whether it pulls a little or a lot to one side, you must always adjust for the pull, and nobody should be shocked if sooner or later you land in a ditch.

Disclaimer

Although I think the core analogy is sound and quite useful, this version of it, by putting the source of the need for adjustment in the “unbalanced steering wheel”, suggests implicitly that there’s something wrong with being autistic. The day after posting the above, I wrote a much better, non-ableist version of the analogy. I have decided not, however, do delete this version, because I think a comparison of the two does a nice job of explaining some core problems with ableism.