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.

Don’t empower me

The terms “empower” and “disempower” are bandied about pretty ubiquitously these days, presumably by people with a genuine concern for groups they acknowledge as underprivileged and taken advantage of.  As I often discuss, however, the intention of rhetoric does not excuse or negate its innate destructive implications.  In this case, according to its own dysfunctional definition, the term “empowerment” is ironically disempowering.  In truer terms, it is both hurtful and harmful.

Let’s deconstruct the word.  The noun empowerment is a nominalization the transitive verb empower:  It takes a subject and an object; it is something one does to someone else.  The pertinent definition of em- is “furnish with” or “cause to be in a condition of.”  -Ment creates from this furnishment or cause a “state, condition, quality” or “result, product.”  So etymologically, “empowerment” is a condition or result with which one is furnished by another.  By extension, dis- denotes a privative or reversing force, again transitive.  So “disempowerment” is the active deprivation of such a result as would otherwise be furnished.

To sum up the semantics:  To be empowered is not the same as to be powerful.  In some sense the two are even opposites.  To be powerful is to possess influence.  It is to have the property energy, whether kinetic or potential.  The circumstances of power’s attribution are syntactically irrelevant.  But to be empowered is to have influence furnished by an outside party.  The agent is ever-present in its conception, whether spoken or assumed, while the one “empowered” is necessarily either the object, or the passive subject.

To be empowered assumes that someone or something has the capacity to grant you power.  That is possible only if that agent is already more powerful than you.  Therefore, to claim to empower– or to disempower– another person is to not just acknowledge but affirm one’s own station of privilege and normativity.  Empowerment does not change the balance of the power structure– it merely offers a charitable reprieve.

What supposedly disempowered people really routinely face is disenfranchisement.  It is our opportunities, not our attributes, that are curtailed.  Conflating disenfranchisement with disempowerment is like saying that being imprisoned makes a person unable to chew through steel bars.  The solution is not to give them sharper teeth, it’s to get rid of the fucking bars.

So don’t you dare presume to empower me.  Don’t think that my sex, my orientation, or my disability means I need your permission to be powerful.  Don’t feed me platitudes about being “special” or “differently abled.”  I am well aware of the scope and shape of my own abilities.  Sometimes, regardless of circumstances anyone can control, I lack the strength– in any sense you like of the word– to live the life I want and need.  That’s my burden to bear.  I don’t need to be fed platitudes about it.  Just don’t put me in a cage, and then you will never have to let me out.

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.