Why our disabilities hurt you, too

One of the most hurtful parts of living with a disability is that it comes to define the outward expression of personhood.  It’s easier for others to perceive that I am awkward and moody than for them to understand the qualities that lie beneath, often masked and hindered.  We become assumed to be so in need of help and understanding that we are able to contribute little to others in return.

I know who I am.  But it rarely shows.  I am, by nature, compassionate, industrious, creative, loyal and brave.  When asked what I value most in life, I answer without hesitation: kindness and a sense of adventure.  I dislike accepting help; my impulse is to give and care.

When I was younger, before I entered the stressful adult world and discovered how deeply my autism, social phobia, and mood swings impair my functioning, I had goals that others admired, and to which I still aspire, yet which I feel impotent to achieve.  I had a long-term dream of serving in the Peace Corps and of teaching overseas.  I wanted to travel and experience other cultures.  I wanted to use my linguistic facilities to help others as a translator in the non-profit sector.  I was active, for a time, with the anti-war movement, until depression and social phobia increasingly forced me out of public and leadership roles.

I’m not claiming to be any sort of creative genius, but I have so many ideas in my head that I lie awake at night rolling them around restlessly.  For five years I’ve been working on a novel about which I feel passionate and committed, but many times the pages gather dust for six months before I pick it up to write another several thousand words in a manic weekend or a peaceful break.  I’ve been praised for my ability to synthesize and interpret large amounts of data, particularly on literature and language, in innovative and incisive ways.  As I previously mentioned, playing with words has been the most consistent drive in my life.  And I strongly feel, though it’s a topic for another day, that words and language–intentionally or not– can shape who we are, socially and individually, and be a powerful force, however they are directed.  To use words intentionally has been my dream.

One by one, I have had to admit that these goals are simply not realistic.  We are encouraged in these days of positive psychology to believe that with enough willpower, we can achieve anything that is important enough to us; that we can choose who and what we are.  But now, no one can convince me that this is generally true. 

I did not choose my brain chemistry or the workings of my body.  I work every day to moderate its effects, but the ugly truth is that the most I can achieve, most of the time, is to lead a halfway functional, simple, unstressful life.  I maintain that bare minimum only by acknowledging my limitations.  When I strive for higher, better, more productive things, whatever success I manage is followed by horrific crash-and-burn.  I push myself, and I break. 

Only by taking have I found any strength to give back.  Excellent disability services have allowed me a modest measure of academic success.  Kindness from family and friends has supported me in keeping my own home and being the best parent I can be.  Recognizing my need for so much quiet, isolated recovery time between engagements and insisting on taking it lets me be a decent friend, and a support to a few acquaintances who struggle with their own mental health and don’t have anyone else to be there for them.

My point, then, is that when we are assumed to be takers, dependents, and resource drains, there’s some truth there.  But what’s acknowledged far too rarely is that taking is our only chance to give.  There is as much to us, good and bad, as there is to any more functional person, but it languishes unutilized and unappreciated.  For you, for the world, to benefit from our unique gifts, we need its kindness.  Your kindness.

A manifesto of anger

An open letter to everyone who’s ever complained to me about lazy people living off benefits.

Dear Fucks Folks,

You come from a variety of walks of life.  Some of you collect six-figure salaries; others have only just come off disability benefits yourselves.  You might be a religious conservative or an idealist.  What you all have in common is an expressed contempt for the character of people who depend on public disability income.

“I won’t move into a building full of disabled people and crack whores.”

“It’s not like they’re blind.”

“They think they’re too good to work like the rest of us.”

“We’re just keeping them from getting better.”

At the root of all these comments, more or less enlightened at face value, is a fundamental confusion between inability and unwillingness.  It’s not as fine or blurry a line as you seem to think, gifted as you evidently are– and I say that straight-faced– with both ability and the inclination to use it to some end.

A good clue to the difference is the simple fact that the maximum benefit currently available for an individual on SSI– the benefit designed for those with low resources who haven’t accumulated a significant number of work quarters; i.e., most people with chronic disabilities– is $721 monthly.  Simple arithmetic says that’s less than $9000 annually.  By comparison, the federal poverty guideline for a single person is $11,490, which translates to about a hundred dollars more per month.  Disability income is also more than 1/3 less than the earnings of a full-time minimum-wage employee.

According to a popular rule of thumb that says 30% of net income should pay for housing, someone living exclusively on disability should pay rent (I’ll disregard homeownership out of hand as totally unachievable and untenable for the vast majority of people with disabilities) of below $250 monthly.

I live in one of the cheapest areas of the country, in the cheapest 2-bedroom apartment I can find.  For this, I pay $540 monthly, and the rent goes up on average about $60 every June, while cost of living adjustments to minimum wage and benefits go up by cents on the dollar.  Add in my basic utilities– while I don’t run the heat until the apartment drops below 55F– and my shelter expenses come to more than the SSI benefit, despite being only 75% of the national average.  An acquaintance who moved from Northern California in the late oughts reports finding studio apartments for no less than $1200 per month, plus a deposit twice that; he gave up his job and friends to come to the Midwest because he simply couldn’t afford to live, and was of necessity dug into a ten thousand dollar hole with payday loan companies.

These shelter expenses are exacerbated by having special needs.  People with mobility difficulties are often limited to available housing that offers first-floor access and 36″ doorways.  When most of the cheaper options existing in buildings 40 or more years old, with multiple stories and no elevators; with a landlord’s market ensuring that there is competition for every available space; with new construction being, obviously, targeted to those of means– this isn’t easy to procure.  In my case, my disability of social phobia and autism, even when I was single and childless, kept me from sharing lodgings with roommates, which could have radically reduced my expenses.

Add to this, further, the fact that low income and absence of a good credit record all but preclude being accepted for a lease:  if I didn’t have a family member to whom to turn as a co-signer, I’d be basically fucked.  And it’s difficult to establish a good credit rating when, as for me, your mental health makes credit cards a toxic concept, and you’ve left an abusive relationship while relinquishing any equity in property you had because you had no income to keep up payments.

After basic expenses, I can’t afford a reliable vehicle of my own, so I pay toward the expenses of a car I share with family in order to transport my son to and from school and his father’s house, gaining no equity: basically flushing what little money I have down the toilet with no possibility of recouping a dime.  It’s the equivalent of buying $10 boots every year instead of $50 boots every ten years.  Less money = less money.

Who among you would trade a disabled person a “lazy” well-below-poverty lifestyle for the security of your job, even if your earnings are meager?

Which of you would take the stress of managing a household on $8500 per year instead of that of working?

How about the hopelessness of knowing that the best you will ever be able to do for yourself and your family is scrape by, without any prospect of more comfort and security for the rest of your life?  The oppressive, guilty knowledge that you will never pay your child’s way through college, or own a home with a backyard for them to play in, or take them on vacation, or set aside savings for emergencies?

And the suffering of people with disabilities is hardly limited to numbers and economy.  I’m sure to many who can work, the prospect of a sedentary life, apparently without structure or monetary responsibility, sounds decadent and enviable.  You’d never miss a TV episode or a chance to drink a beer; you could finally spend time with your family, and, for some of you, catch up on that reading you’ve been meaning to do.

I don’t even deny sharing these sentiments during the few months at a time that I once struggled to maintain paid employment.  The grass is often greener, and I will never dismiss the fact that low-wage work is exhausting, unfulfilling, direly undercompensated, and oppressive in its own right.  That’s why I respect wage earners as much as I do: because I understand exactly how difficult and miserable that life can be.  My only quarrel is with the employed who view those less able as personally and morally inferior.

Let me inform you now that however it looks from the other side of this cloudy glass between us, life as a person with a disability is, frankly, hell.  You could pay me a middle-class income and it wouldn’t make up for the fact that I will never have the social and personal opportunities you enjoy.  I don’t have the privilege of spending my days locked at home alone watching the dishes pile up and the laundry scatter on the floor and the paperwork go undone until someone spills food on it.  I don’t have the luxury of being supported by the work of others.

No.  I’ll be fucked senseless if there is a day goes by that I think of my life in those terms.  My existence is one of constraint.  Of looking out the window watching people crowd toward their jobs and complain to one another and celebrate holidays and check their mail and take out their trash and pay taxes and repair their cars and go to the gym.  Of feeling involuntarily severed from the common suffering that holds society together, immersed in a solitary world where I am shamed every day by myself and others, incapable of pursuing the passions that compel me.

Staring blankly at the pages of books I meant to read for years.  Watching organic vegetables rot in the fridge while I lie on the couch without an appetite.  Watching episode after episode of inane Netflix titles– the same ones day after day, because I can’t follow anything new– because I can’t bear a moment alone with my own mind.

Making promises to the man I love and not keeping them, day after day, and seeing the sadness in his eyes– the eyes of less than a five-fingered hand’s worth of people into which I can honestly look– when he walks in the door, and looking for excuses and finding none other than who and what I am and will always be.

Having to explain to my child’s eager, innocent face on a warm day in November that Mommy is too tired to take him to the park, and seeing the resignation in his eyes because he has heard it so many times; watching him wander off to his room to entertain himself, or drift neutrally into an hour of My Little Pony, while I pull the covers over my head and wish I could cry about nothing something and everything.

Envisioning myself in the lives that everyone always wanted for me, as academic, poet, entrepreneur, musician, and grinding them into shards that slice me to ribbons because they are nothing more than idle fantasies, before I chuck them, day after day, into the bin of things that are restricted to Other People.

Who among you wants to get a few hours of video games in exchange for that impotence and shame?  Which of you wants to face the scorn of the gas station cashier when she tells you your card is empty and you can’t buy a bag of chips?  Which of you wants to be struck down year after year while you long for a life of strength and hope; told again and again that you are not and will never be up to the standard of the norm, and are thus worth nothing?  Who among you would face your own spite?

So go ahead, call me lazy.  But you’re right:  I’m not the one here who’s blind.

Yours Truly,


Puzzling over neurodiversity

Do I suffer from autism?  Yes.  Is the suffering due primarily to needs unmet by a world designed for non-spectrum people?  Absolutely.

And that fact is why I’m so disturbed by the puzzle ribbon.  It may seem nitpicky.  I believe– or at least hope– that most people who display the ribbon do so with genuine good intentions, to signify their solidarity with autists.  But the symbolism is all wrong.  It’s more than offensive; it’s harmful.

It is, at its core, objectifying.  It defines a group of diverse individuals by their collective relationship to the majority, as something incomplete and enigmatic.  It suggests that for non-autists to understand us, they must, perhaps through research and analysis, piece together an objective perception of our “condition.”  This rhetoric feeds into the paternalistic misconception that autists need “help.”  Treatment.  Acclimation to the norm.  And at its root– a cure.

I’d like, here, to draw a couple of comparisons that might clarify the problem.  First of all, the counterexample of the rainbow used to express membership in or alliance with the queer community.  This symbol is far less, if at all, problematic.  It does not insinuate that queer people are defined by existing outside the typical community.  Rather, the rainbow is by definition inclusive, representing the continuity of sexuality, embracing unity and diversity, not limitation.

By adopting the term “ally,” people cast themselves as friends and equals to people of a variety of sexual self-definitions, comrades-in-arms against inhumane attitudes and policies, not as “supporters” of a handicapped group unable to advocate for themselves.  Furthermore, the rainbow image was initially created and used by queer people ourselves, and has not been appropriated, but willingly shared with full respect for and accordance with its original intentions.

At the opposite extreme, whose relevance may at first seem gratuitous and hard to grasp, I want to cite 19th- and 20th-century colonial rhetoric about black Africans.  Joseph Conrad hits the nail on the head in Heart of Darkness when Marlow describes the difference between conceiving of truth as a “kernel” inside a shell to be cracked– something illusive, but tangible– versus the way he himself perceives it, as a distant light sometimes illuminating, but coloring, not penetrating, a constant haze.

Colonial rhetoric sought to categorize and define African peoples by contrast to its own mores.  It claimed to have determined an objective truth: that the continent was universally characterized by darkness and barbarism, through which white post-Enlightenment virtues could penetrate and emerge victorious.  Colonialism was couched in terms of rescue, without regard or respect for the experience of non-white cultures.  The white invaders believed they had cracked the nut of foreign existence, and found the kernel wanting.  In seeking– whether as pretext or genuine, misguided good will– to enlighten Africans, they neglected their own moral development and denied the possibility of reciprocal outreach.

The next step up from rescue and the shedding of “light” into “darkness” is the concept of support.  The puzzle image is little different from the metaphor of the nut.  At the least, autism “advocates” don’t claim to have already extracted the kernel and decided how to cook it.  But they leave the possibility open, and laud it as their goal.  To piece together the puzzle.  To form a coherent non-autistic conception of autism as an object in its whole.  (Tangentially, I find it significant that the imagery of this whole is always two-dimensional.)  The puzzle ribbon seeks to construct a truth.  The problem is that this truth is non-existent.

What this ideology does, at its heart, is discount the personal experience not just of autists, but of all social anomalies and discontents.  It says that we are not worth knowing, because it’s more important to know about us.  That the goal is to figure out what should be done about us (read: to us,) not what position we want and choose to occupy.

So what’s the alternative?  To reach out– non-autists to those on the spectrum, and vice versa.  To share our subjective experiences without the expectation that individuals from either group will ever be able to fully comprehend the world through the eyes of the other, but with the simultaneous realization that neither can such understanding be reached between any two individuals.  To define our relations as unique, diverse, and bilateral.  To listen and to empathize rather than to construct and support.

Autism support and advocacy need to come, first and foremost, from autists ourselves.  Of course, there remains the issue that non-verbal and isolated autists lack the tools to self-advocate.  This is a problem that must be addressed, but it does not on that basis discount the value of more “high-functioning” autistic expression.  Our friends can learn to be our allies through equal discourse identifying mutually desirable ends.  They do not need to research us or puzzle over us.

In a sense, we will always be a puzzle.  But so will everyone, to everyone else.  The best we can do is to appreciate the beauty and diversity of the parts we can see.  When you try to crack the shell of a person or group, you will undoubtedly find out that they were never in there after all.



The disability dilemma

Identifying myself as disabled has been a big step forward for me.  I grew up comparing myself to my peers and feeling like my differences and difficulties were my own fault.  Particularly with regard to academics, after a time I began to feel that my high IQ was misleading, and that the frustrations I encountered trying to master some material meant that I was, after all, stupid.  This has been a particularly painful supposition for me because at the same time, I have tended to value intelligence as the only plausibly admirable feature of myself, a saving grace that could compensate for being irritating, awkward, unattractive and useless.

During my brief stint in a public junior high, I got grades that were not bad, but basically mediocre; not up to the expectations of my teachers or myself.  Verbal directions in class baffled me, so that I consistently failed to complete assignments or totally misconstrued what the teachers wanted.  I lost my textbooks, and dropped my binders in the hall, losing the work that I had done.  Despite being a hyperlexic who learned to read at age 3 and devoured books ever after, my reading comprehension was lacking.  Meanwhile, I was being teased by my classmates for everything from my laugh to the way I walked to my facial expressions, not to mention my social befuddlement.  In a sense, my IQ was a curse, because no one ever thought to test me for learning disabilities or even talk to me about my problems; they just became irritated with me for “not living up to my potential,” and the anxiety provoked by their unconcealed disdain made it all the more difficult to concentrate and succeed.  I became so bewildered and frustrated that I began to suffer for the first time from morbid clinical depression, and started to consistently engage in self-harm to release the unbearable tension that built up within me.  Eventually, when the bus pulled up to the house one morning, I simply melted down, hid, and flat out refused to go to school.  I never went back.

By the time I started college, I had gained some ability to follow what was going on around me and complete the required work– aided substantially by textual syllabi and assignment sheets– so I was able to get very good grades.  Still, I was peddling uphill in many areas.  I spoke out in class too much and was laughed at by other students and frowned at by instructors for making comments that seemed argumentative, pretentious, pedantic, or otherwise inappropriate.  I had no study skills.  I would take notes almost word-for-word on lectures, and to prepare for a test I would repeatedly copy out this entire body of notes– sometimes over 100 pages for a single class– until the exact words were drilled into my brain.  Obviously, this process consumed prodigious amounts of time; luckily as a teenager without a social life I had few other obligations and could afford to spend whole days on studying.  My reading speed and comprehension was still suffering.  When, as a sophomore, I took a senior-level history class in which several nonfiction books were assigned, I would read a page and then forget what I had just read, so that by the time I got to class discussion or writing a response, my mind was totally blank.  I ended up dropping the class because I didn’t feel like I could ever keep up with the reading, and since I was busy blaming myself I didn’t know how to ask for help.  My shame and anger at myself for not managing work that seemed so manageable for other students contributed to my decision to drop out soon after, and that, in turn, helped to confirm that the one attribute in which I took any pride was a false front concealing a mind of no worth at all.

Now, returning to school almost a decade later, I have the advantage of diagnoses that have permitted and encouraged me to seek accommodations in my classes.  Extended time for tests allows for my slower executive function and compulsion to complete only perfect work, and for periodic breaks to re-center my attention.  A private, silent space avoids my discomfort with the overwhelming sensory stimuli and social anxiety intrinsic to a room full of students.  Note-takers in lecture classes make sure that if I am absent due to mood swings or lose concentration, I won’t miss vital information.  My disability status has also given me a sanctioned cognitive arena in which to speak to my professors about additional flexibility I may require on a case-by-case basis.  Although I have also made progress of my own initiative– for example, working to improve my study skills and time management so that I can learn effectively in the much more limited time now available to me– I feel very strongly that without these external accommodations I would not be able to succeed at a reputable university to the extent that I have.

However, my insecurities about my learning and intellectual abilities still jump out and bare their nasty grin more often than I’d like to admit.  I hold myself to unrealistic standards that, more often than not, serve to cripple rather than motivate my performance.  And I am ridiculously touchy about any comments that seem to imply I’m stupid or incompetent.  Sometimes these are blatantly rude interactions, such as when a fellow student recently snapped “Shut up!” while I was talking in class.  However, rather than be offended at his lack of social intelligence and stand up for myself, I took the incident deeply to heart and have been using it repeatedly to remind myself that I am incapable of behaving “normally” in class and making legitimately intelligent contributions.  At other times, I freak out over basically innocent comments, as when a professor who’s overall a first-rate person and instructor sarcastically remarks on “pretentious” pronunciations that I happen to share.  Rather than brush it off as not a personal attack, I again interpret and internalize it as a judgment about myself:  “See?  My bookish spelling pronunciations and efforts to correct my odd tone and diction make me look like a prat trying to be clever and failing miserably.  In fact, I am failing to be smart, and this is proof.”  The disability label, instead of a functional construct, thus becomes, to my mind, a facile and self-indulgent euphemism for incompetence and failure.

The flip side of this flip side, though– making this a trilemma perhaps?– is that at times, I secretly and guiltily wish that I was just a little bit more disabled.  I resent the fact that I had to reach my mid-twenties and discover my problems through trial and error and error and error and happenstance and research, because no one earlier in my life recognized my struggle as abnormal and sought to help me in any way, because I was left to stumble through the world confused and alone and self-loathing, with no comprehension of why I had to feel this way. I was classified as “gifted,” with all of the idiosyncrasies that is assumed to encompass, and the matter was left at that, with no realization that I was more than idiosyncratic; I was living in a different world, and I was miserable.  Had I not been labeled so early as precocious and gifted/talented; had my disabilities manifested themselves in more marked ways; had I failed worse and been less capable of barely floundering through; had I been a problem child instead of a quiet imaginative one; had I been years behind instead of ahead in my verbal abilities– might I have been noticed and helped from the start?  Might I even now receive more sympathy and be more legitimized, if I appeared pathetic and hence inherently courageous rather than just slightly “off,” abrasive, awkward, and a little slow on the uptake?  Might I feel better about myself if I was absolutely sure I had a problem to work with and not just an issue to get over?

These are the perceptions surrounding the disability identification for me.  I am very curious to know whether anyone else has had similar experiences and sentiments.  Even more than usual, I encourage everyone to contribute their perspective and open a dialogue about what the term disability means to you and how you employ it in your thought processes and daily life.  headcheese out.

The sinking of Aspergia

Public commenting has now closed on the fifth edition of the DSM, the first new version in 18 years.  For those who don’t know, the Diagnostic and Statistical Manual of Mental Disorders, released by the APA, essentially decides 1) what diagnoses are available to mental health patients, and 2) what the diagnostic criteria are.  If you clicked my linky about BPD a couple of posts back, then you’ve seen the format.

In the DSM-IV, Asperger’s Syndrome is listed as a separate disorder from Autism, distinguished by a lack of delayed speech development.  As of the release of DSM-V,  Asperger’s will no longer exist.  Nor will the other popular diagnoses of PDD-NOS and NLD.  All of these will be lumped into a single diagnosis of “Autism Spectrum Disorder.”  In addition, the diagnostic criteria will be reorganized from three categories down to two, and expanded to include sensory issues and aversions.

Some in the autism community have been anticipating this change with attitudes ranging from nervous to Armageddon.  I personally have yet to hear anyone be really excited about it [how’s that for scientific?].  The main fear, it seems, is that those diagnosed with so-called “higher functioning” flavors of the spectrum will lose their diagnoses after the revision.  However, it appears that this fear is misplaced.  The Autistic Self Advocacy Network states, “We believe that the unification of the disparate DSM-IV autism spectrum diagnoses into a unified ASD diagnosis under DSM-5 constitutes a positive development…”  For those who prefer the smug, slick brandedness and dubious motives of Autism Speaks® (go figure, it’s up to you, that’s a topic for another day), they also profess “cautious optimism” about the changes.  Both organizations are convinced, based on research and discussion with the APA, that anyone who currently has a spectrum diagnosis should receive a diagnosis of ASD under the new system.  Of course, this still leaves the question of whether people will find it harder to receive a new ASD diagnosis than they would have to be diagnosed with Asperger’s, etc., before, but I don’t consider myself qualified to discuss the clinical validity of the changes.  Instead, I’m concerned with the meaning of the labels themselves and their effect on the discourse and thought processes surrounding spectrum disorders.

To provide some context for those less familiar with the area, the term “autism spectrum” has been widely used for a good while.  I’ve been using it here.  The label serves as a way to unify groups of people who experience the world in related but diverse ways.  At the same time, sub-categories like Asperger’s have been used to identify where on the spectrum any given person fits.  So, one web community might welcome and house people from across the spectrum, but many of them will list their diagnoses as a siggy– for a totally made-up example, “Dx’d NVLD, ADHD, Social Anxiety, Allopecia, Erectile Dysfunction.  Suspected HFA and initialismophilia.”  [Yes, those are initialisms, not acronyms.  An acronym is when you pronounce it as a word, like SARS, AIDS, and other depressing diseases.  An initialism is when you say the letters, like ATM.  Stupidity is when you say the letters and then repeat what they stand for, like “ATM machine.”]

Part of the reason that people are so concerned with specifying their diagnoses is because of the public image of “classic autism.”  Prior to Asperger’s becoming widely known– and, in fact, since then, because I don’t think most people are aware of the concept of the spectrum and understand Asperger’s status thereon– the image conjured in the average person’s mind by the word “autism” was of a young child, usually a boy, who is non-verbal, in danger of getting lost in the woods, and probably a savant of some sort.  Naturally, this isn’t a misconception, since these individuals do exist, and their (dis)abilities deserve as much attention and understanding as any others.  However, it is a narrow conception that has done immeasurable harm to those whose autism manifests in different ways.

The popularization of the Asperger’s diagnosis, along with other related labels like PDD-NOS, has brought a much wider range of experiences into the conversation.  It has allowed people like myself, who previously struggled through life feeling as though we were just somehow off-kilter and capable of being “normal” if we just tried hard enough, to find a recognizable and legitimized way of talking about our differences.  It has offered us chances at invaluable treatment and accommodation, particularly for us adults whose “higher functioning” status previously slipped under the radar, and who were then basically considered non-existent because autism was perceived as a childhood condition.  Many people have become aware that those who may appear ridiculous or uncomfortable because of their awkwardness, restricted and esoteric interests, odd mannerisms, and general seeming inability to “get it”– that these losers have legitimate reasons for their differences, and possess unique strengths, but also weaknesses that deserve support and understanding.

That’s the positive side of the label.  As with most things, there is a negative, as well, or a couple of them.  First, there is the danger of the Asperger’s label becoming stereotyped, and thus either dismissed as harmless fun or pejorated.  To see how this works, look to what certain aspects of queer culture have experienced, with mass media’s obsession over the idea of effeminate male interior designers, hairdressers and fashion experts who call everybody “honey” and swoon exaggeratedly over anything that looks like an underwear model.  And the consistent portrayal of gay women as gritty, street-smart, hip and promiscuous.  You might think the proliferation of queer television stars and protagonists would foster acceptance and diversity.  In reality, these treatments single out an aspect of a community by which the average television viewer is not threatened (or by which, perhaps, they are aroused) and thus not only marginalize other individuals but make a laughing-stock of the same exaggerated stereotype they create.  These unfortunate victims of entertainment whoredom are the “friendly niggers” of the digital age.  We don’t hate them, but it’s safe to laugh at them because “some of my best friends are gay,” and we can feel comfortable with our self-perpetuating assumptions that, for example, same-sex attraction is purely sexual and therefore relatively indiscriminate, which allows us to evade the more disconcerting idea that queer people might actually be just like us.  [I don’t really know why I’m saying “we” here.  That doesn’t even make any sense because I’m, roughly speaking, on the other side of the equation.  I suppose it just sounds less accusatory phrased this way.  Whatevs.]

Anyhow, returning from that digression, Asperger’s has already begun to suffer similar media treatment.  A great example is the character Sugar from Glee: basically a spoiled brat who waltzes into the show announcing that she has “self-diagnosed Asperger’s” and can therefore say whatever bitchy things she wants.  If you know Glee, you might argue that this is just one comic character among a cast of equally exaggerated stereotypes.  If you know me, you also know that I’m the first to laugh at my own foibles.  What makes this characterization so damaging, though, is that people on the spectrum are not, to my knowledge, widely represented in a large number of more sympathetic roles elsewhere: we are a novelty, and the first few portrayals of us will be highly influential in determining how we are viewed by the population at large.  The addition of the “self-diagnosed” jab doesn’t help matters either.  The testing required to obtain an official spectrum diagnosis is difficult and time-consuming to obtain, particularly for adults, because the emphasis by most testing centres is on diagnosing children and working with them at an early age; therefore, many who legitimately deserve the diagnosis qualify as “self-diagnosed” with support from family and friends.  Unlike with many psych conditions, the symptoms and experience of autism are distinctive enough that self-diagnosis is far from ludicrous.  Ridiculing this fact marginalizes those who haven’t made it through the testing system yet or prefer not to go through the process.  I’m disappointed to see such a shallow, prejudiced portrayal from a series that offers one of the most nuanced, sympathetic representations I’ve seen of queer characters.  I don’t believe that any producers would be so crass as to represent other conditions like “classic” autism, schizophrenia, blindness, brain damage, or clinical depression in a similar manner, because these are “serious” disabilities and the viewing audience would undoubtedly take offense.  But because of the distinct “Asperger’s” label, it’s somehow okay to minimize and parody genuine neurological differences, because it’s taken as just another “fad” diagnosis like hypoglycemia and fibromyalgia.  By including Asperger’s in an autism spectrum diagnosis, perhaps we can alter this perception and garner more respect.

The other problem I see with the Asperger’s designation is its effects on discourse within the spectrum community.  Many with a simple autism diagnosis feel that differentiating a portion of the spectrum as definitively “higher-functioning” imposes an artificial and unscientific hierarchy, in which certain parts of the spectrum are encouraged to look down on others.  I believe this works in both directions: those with the most severe difficulties dismiss those with an Asperger’s diagnosis as not really disabled– a judgment with which I disagree emphatically, since only about 20% of those labeled as Aspies are ever able to function at full capacity, meaning they are able to obtain education appropriate to their intellectual abilities and work according to their qualifications.  Aspies are also thought to feel themselves superior to other autists or, at the least, to feel a disconnect with the rest of the spectrum and confine themselves to interacting with the similarly abled.  I don’t think that these generalizations hold true, as I know too many good-hearted people from all areas of the spectrum whose attitudes are inclusive and non-judgmental.  I also know, though, that there is an amount of truth in both ideas.  In addition, patronizing organizations like Autism Speaks® take advantage of the perception of division to argue that anyone with a more “functional” diagnosis, who is capable of self-advocacy due to verbal and social skills, is by definition unqualified to advocate on behalf of the rest of the spectrum; they argue that the eugenic battle for eliminating autism from the gene pool is justified on the basis that those who can’t communicate their experience would, if they could, agree, and that people with HFA and Asperger’s are incapable of understanding what they somehow intuit.  (This is a pretty discriminatory attitude, if you ask me, which no one did: it assumes that our fabled lack of empathy disqualifies us from speaking on behalf of others.)  My hope, therefore, is that getting rid of divisions within the spectrum can encourage identification and relation among those differently abled.

Finally, there is the belief, which I find repellantly arrogant, among many diagnosed with Asperger’s that the syndrome ought not to be considered a disability, but perhaps even a superior evolutionary development.  I highly doubt that anyone, again, would be so audacious as to make such a statement about autism in general.  It’s possible to argue for neurodiversity and reject eugenic discrimination without asserting that we do not suffer from legitimate setbacks or engaging in reverse discrimination against “neurotypicals.”  (This is another detrimental term; it implies that there is a concrete, generic norm against which we must define ourselves by distance and contrast.)  The fact is, like it or not, that social evolution has consistently worked in favor of those with the most developed social skills, and that modern society is based around the assumption that people behave and interact in certain normative ways.  This doesn’t mean that we are inferior, but it does mean that, in terms of the ability to function in this extant framework, people whose brains work differently are inherently compromised– read, disabled.  Yes, many of us also exhibit extraordinary abilities that have served humanity in invaluable ways, but this doesn’t negate the fact that our differences cause us to struggle and, often, sadly, suffer.  Denying that we are disabled amounts to denying us the right to appropriate accommodations, and this is something with which I can’t help but being intensely concerned, because those accommodations have allowed me to progress immeasurably farther and lead an exponentially more fulfilling life than I can otherwise imagine.  The idea that this leg up should be taken away from us is best left to the same people who bitch about welfare queens.

So, in the face of these pros and cons, I greet the new DSM with similarly cautious optimism, but also with a slight twinge of loss.  As for many, many others like me, Asperger’s was a label that proved useful to me for a good while.  It helped me make sense of my life, figure out how I could improve my situation, ask for what I needed, and be comfortable with who I am.  However, I’ve known this change was coming for some time, and I look forward to seeing what, if any, changes it will bring in the treatment– both conceptual and therapeutic– of spectrum disorders.   I think that the vocabulary we use to discuss our experiences is crucial to public perception and, in turn, acceptance and accommodation.  I hope that the new diagnosis will become a tool for inclusion rather than exclusion– that rather than narrow the group of people whose differences are acknowledged, or make way for new artificial divisions, it will foster a sense of supportive community that contains a place for all those on the spectrum in our infinite diversity.