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,

headcheese

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.

Into the mix

I will soon be writing a multi-part journey through my experiences in therapy, so I’ve been thinking back on my frame of mind the very first time I started getting psychiatric treatment.  Twelve years ago now: not far off half my life.  At the time I received a very strange diagnosis, which neither I nor any subsequent practitioner has been able to understand, of PTSD.  Talking about it in the interim, I have always let the assumption rest that I was in fact having my first major clinical depression.  Which I was, without a doubt.  But chewing on it more recently, I’ve started to suspect that what might have been going on was the moody thing less unpleasant than major depression: my first mixed episode, and hence, the beginning of my bipolarity that would go undiagnosed for another 9 years.

And what a lovely coincidence it is.  Truly splendid.  Because I have an awful tooth-aching feeling that such a phase is bearing down on me as I write.

I am diagnosed with Bipolar II, and spend the vast majority of my time being depressed.  I don’t mean just that I have more “downs” than “ups,” but that literally about 45 weeks out of the year I will fit the criteria for major depression.  Out of the remaining weeks, perhaps 4 will be spent in hypomania.  That doesn’t leave a whole lot of time to be “normal.”  The “II” caveat in the diagnosis means that I have never had a case of full-blown mania, only its milder cousin Hypo.  As such, the descriptor for my mixed phases is “agitated depression,” but that minimizes their danger and misery much more than the term used with Bipolar I, “dysphoric mania.”  Either way, though, what it really means is meeting the standards for a (hypo)manic and a depressed episode at the same damn time.

That doesn’t mean “in the middle.”  It means being ripped down the middle.  With all the blood and guts you’d expect.  If it’s not clear yet why that would be the worst of all possible moods, let me elaborate by breaking down how I feel right now.

Typically, when very depressed, I will spend a whole lot of time lying down.  It will be difficult to get out of bed, and when I do, it will be to slump to the couch and watch TV, until I’m too depressed to care about that either.  If I’m hypomanic, on the other hand, I’ll hop out of bed after 4 to 6 hours of sleep, make breakfast, and start compulsively and single-mindedly working at something that seems very important, like cleaning the house, making 10 pages of notes for a blog post, or outlining a grand plan for a vacation several years in the future.  Right now, I am sitting on the couch with 10 tabs open on the computer with different subjects I feel are very important, including this post.  I don’t have the energy to get up and do anything, but I’m trembling all over and can’t sit still.  I’m dancing my feet around so much that the cat can’t convince herself they aren’t little animals to attack, and not because I’m excited or even anxious but because it feels like my muscles are trying to crawl out of my exhausted body.

I’m particularly exhausted because of my lack of decent sleep.  I am taking an antipsychotic to make me sleep at all, but unless I had trained myself to lie down in bed against my instincts, I would stay up until 3 in the morning doing what I’m doing right now, and being miserable.  So I take my drug and I go to bed and after a while I fall asleep; then I promptly go into epic dreams that seem to last the entire time I’m supposed to be resting.  5 or so hours later I wake up shaking and sweating, and I can’t immediately drag myself out of bed because of my sense of dread, but I also can’t ever get back to sleep, so stay in bed breathing hard and grinding my teeth until I can’t bear it anymore and get up and walk around in a strange nightmarish fog, too tired to think, too awake to rest.

There’s also the fact that I’m starving myself, especially given the increased metabolic need created by my constant tensing and agitation.  When I’m hypomanic, I will perhaps go on a strict diet, or I might become obsessed with learning dozens of new recipes from a specific cuisine and spend all day cooking.  Either way, I will likely be very, very concerned with what I am and am not eating.  When I’m depressed, I don’t give a fuck.  I’ll lie here feeling starving but without the wherewithal to do anything about it; or I’ll forget that food exists and lose 10 pounds.  Now, mixed, I am gnawingly hungry and would really like to eat and I keep intending to get up to get food, but at some point along the way I stop.  Either I go to the kitchen and stare at the food unable to comprehend what it is or what to do with it, or I stand up and forget where I’m going and stay there rigid until I snap out of it, or I go to get up but a sudden paralytic horror overtakes me and I instead sit here digging my fingernails into my palms while thoughts blacker than you can likely imagine hive and swarm in my head.

That swarm is, in itself, the worst and most characteristic aspect of mixed episodes for me, and probably the single best way to sum them up.  All of the racing, uncontrolled thoughts and multifarious ideas of “regular” mania.  All of the despair and self-loathing of vanilla depression.  Spliced together like a demonic chimera.  At this point, many Bipolar I patients would report crossing into full psychosis, believing that they are tortured by agents of Hell (one acquaintance of mine describes having been convinced for eight straight months that she was possessed by Lucifer and must either be exorcised or kill and mutilate herself.  She eventually turned to meth to cope, and I can’t say as I blame her.)  Maybe it’s a product of delusions of grandeur– feeling you are uniquely important and powerful– colliding with the depressive belief that you are irredeemably bad.  I suppose I should feel fortunate that I only wake up with the fear that there are corpses hanging from my ceiling; the sensation that the shadows in the corners of the room are closing in around me; I only have dreams that I am being chased through an asylum by a psychopath.  These thoughts don’t cross over into true delusions or even hallucinations; they are “merely” obsessive.  From a subjective perspective, that’s plenty bad enough, thanks.  I don’t really want to dwell on what it would be like to go beyond, to have a psychotic break, partly because I have a terror that it may someday happen.

One of the few ways this manifests externally– due to my practiced and maladaptive art of concealing whatever is really happening to me– is through rage.  I hate myself right now and I hate everyone and everything.  I confess to having violent outbursts against a partner in the past, before I was diagnosed or knew anything about a mixed episode.  Thankfully, it has been many years since I stooped to that low, and I believe with my current knowledge I can cope well enough to hold myself back from that, although I’m a little less confident about my ability to keep self-harm at bay, despite the constant effort I make.  I can’t abide being interrupted from what I’m doing, even though I can’t, myself, keep track of what that might be for more than a couple of minutes.  (So far, I have worked at this post off and on for about three hours, as near as I can reckon.  A large part of that was spent simply trying to reread and understand what I’ve already set down, correcting abandoned thoughts and errors of syntax, then struggling to compose a new sentence or two that somehow follows from it, and rereading again, and so forth.  Why do I bother, then?– Firstly, because my dysphoric energy demands SOME outlet, however impractical; secondly, because I still retain a conviction that it is very important for me to set down this experience while it happens, because I know whenever it ends I will have lost a large part of its seriousness, partly as a protective mechanism, as with any trauma.)  Anyway.  Everything that happens makes me feel like a wild animal.  But when I do get my surroundings “peaceful,” the commotion in my head deafens me, and I want the distractions back.  It’s an impossible dilemma that I can do nothing about except ride it out, trying to hurt the people around me as little as possible.

The difficulty of that admission can hardly be gotten across.  I’ve gradually learned to be more open about my depression and ask for the help I need; not to minimize its severity out of pride and shame.  To a lesser extent, I’ve started to admit when I’m hypomanic so that those around me can be alert to the risks of impulsive behaviour.  Writing or talking about mixed episodes– particularly as relatively infrequent as they are, occurring perhaps once every couple of years– is still the hardest and most painful thing.  They are so far outside the realm of what almost everyone I know experiences, without the awareness increasingly awarded clinical depression and, more recently, mania (which is often dangerously glamorized.)  They are frightening to me and I know they are frightening to others, because my symptoms sound so bizarre, and now is when I have the most potential to hurt others– not physically, but by lashing out verbally, being cruel and manipulative and intolerant, and absolutely withdrawing from everyone who cares.  I am terrified that people will want to commit me (conditioned by the way that’s hung over my head for the last three years or so) or will not leave me the fuck alone.  Even stronger than usual right now is my horror of being Supervised, Worried Over, Pitied.  If people sstart to treat me that way, I’m genuinely scared that I will either claw myself and let out a long piercing scream, or run like hell which almost certainly equals being committed.  There a lot of reasons for this phobia of concern, which I will have to go into at a later date.  Suffice it to say that writing this post is an awful and frightening experience because I’m waiting for the shit to hit the fan, the phone calls, the impromptu visits, the troubled looks, and eventually– because it always does come– the blame and resentment.  Feeling depressed doesn’t seem so blameworthy, because it’s kind of like being sick with the flu for a really long time, which is at least relatable.  And being hypomanic isn’t that worrisome, except when I spend more than I should, which isn’t a matter of serious danger; and not that upsetting (certainly not for myself, who am looking at life as a field of golden sparkles) except when I’m loudly rambling on without making a whole lot of sense to anyone else.  But anger is simply unacceptable.  It’s thought of as a poor choice, something everyone has to learn to control.  And because people can’t fathom my experience, they also can’t understand why I feel so much rage or how painful it is for meit just comes across as a personal insult and attack.  I can call my mom and say “I feel too rotten to take care of my kid because I can’t get off the couch.”  I can ask Person of Interest to take over for a while because I have to go nap.  But I can’t bring myself to say that I need to be alone because anyone who is here will bear the brunt of my unleashed bitterness, bone-slicing irony, and contemptuous gaze.  Instead, I just try to suppress it all inside me like a pressure cooker, desperately clinging to miniscule outlets like repeated smoke and bathroom breaks and letting my son watch way too much My LIttle Pony, begging for this phase to pass before I become unbearable to myself and others.  It’s at this time that I am most vulnerable to a relpase of alcohol abuse, and to going so far with that abuse as to seriously harm my body.  Right now I can’t afford that, which seems to me a desperately needed modicum of relief, because I’m in intensive outpatient treatment that requires a daily breathalyzer, periodic urinalysis, and a stipulation that should I relapse even once, in any amount, I will either be transferred to a restrictive residential program, or dismissed from treatment, neither of which is tenable.  I hate to sound arrogant or condescending, but truly, unless you are one of the rare people who has been where I am, you can not POSSIBLY comprehend the amount of self-control, to the extent that it feels like flagellation, that this effort requires.  It is way beyond trying not to scratch an itch.  It is submerging your face in a bowl of scalding water and, by sheer force of “will” (whatever, as Nietzsche and I would question, that outdated concept signifies in the first place) not allowing yourself to come up for air.  It is sawing your own legs off with piano wire.  It is plucking out your own eyes.  So when all of you are judging me and saying I’m not fit to be unsupervised and that my meds aren’t working and that I’m a crazy fucking cunt, when you’re being disturbed by all that I have written– remember THAT.  That I am doing a more difficult thing than you have ever done or will ever likely do.  That I am succeeding where 99.9% of people would fail.  That I am exercising every fibre of my being, every ounce of concentration left in my frayed body, to protect others and, for their sake, protecting myself.

That, in itself, begins to let the rage shine through, because it sounds like I am attacking others.  Maybe it’s true that, in this one safe anonymous space, I am allowing my anger to reveal itself.  But I am also simply being frank, because I want to give honest voice to an experience that is almost impossible to communicate, while at the same time reminding people with stable moods not to ostracize or pass judgment on what and who they don’t understand.  I firmly believe, because of the unjust treatment I have been subjected to, that up until the point of psychosis, the adult mentally disables should continue to have their beliefs, desires, and self-determination taken very, very seriously.  This post is my way right now of advocating for civil and human rights.  FYI, the clock now stands at about five hours of work.  Please, I beg of you all to take this seriously and pass it along, even if you normally ignore my blog.  It is not just important to me.  It is important to every bipolar person, and by extension, to the entire mentally ill and even the entire disabled community.  I guarantee you all know and love someone with mental illness, even if you don’t know it.  Don’t fail us.

NB:  I want to adamantly point out that this post is NOT a “cry for help,” a threat, a statement of suicidal, aggressive, or self-harming intention, or any such thing.  It is a piece of self-expression and disability advocacy, nothing more or less.