We are accomplished

Shame is one of the most crippling aspects of any non-visible disability.

There is a constant struggle to figure out how society’s expectations can be molded to fit within individual limitations– or, more usually, vice versa.  Often, we expect being disabled to translate into simply working harder, so that we can have a “normal” life.  When we do this, pushing ourselves to succeed in school, work and other sanctioned accomplishments, we’re often lauded as “brave” for “overcoming” something.

So when we’re not able to make up in determination what we lack in functionality, the default message is that we are less brave, less heroic, less worthy of acknowledgment.  We’re either a source of disgust– benefit scroungers, mooching of the state or dragging our families down– or we are simply ignored.

This bifurcated judgment is in many ways the worst slight that can be perpetuated against people with disabilities.  We are basically being encouraged to aspire to “normalcy” no matter the cost, cultivating an ethic of overwork and obsession that would be recognized as unhealthy in more able individuals.  While they are being encouraged to seek a work-life balance and reflect on what they love to do, we are being implicitly told the opposite: that the only way we can contribute to society and be worthy of admiration is by throwing ourselves forcefully at any obstacles to our path of integration.

The downside is that rather than crushing those obstacles, we’re just as likely to bash our heads in.  Those are the stories you won’t hear.

We have goals, like anyone.  We grow up, in the last couple of decades, being told like our peers that we can do anything if we try hard enough, and we want it to be true.  There are disabled people who are hard workers, diligent, talented; who aspire to leadership, power, knowledge, and all the other virtues considered worthy by our culture.  And yet this guarantees nothing.  Insurmountability is very real and very scary, and as bad as it is to think about it– as paralyzing as it can be– it’s just as life-shattering to suddenly realize that your faith in persistence and discipline has left you short of the mark.  All the more so when you’ve never been told that this can happen to you, or that there is any other explanation than personal failure.

There is a lot we can teach each other, and so much support we can offer, when we simply take the time to be authentic and truthful, perhaps brutally so, about our difficulties.  The benefits of non-pharmaceutical therapy are lauded in most circles, yet rarely is it acknowledged that changing your lifestyle can mean much more than doing yoga, walking, meditating, eating kale and quitting smoking.  Many of these treatments are geared at reducing stress, yet for a person with disabilities, they may well never be enough.  Sometimes, life itself– as defined by ableist culture– simply offers more stress than your mind and body can tolerate, regardless of what other measures you use to combat it.

This might be because a chronic physical illness leaves you feeling exhausted and ill, and in no condition to cope with high-pressure situations, which often make the problem worse.  Or it may be because activities most people don’t even think about can be overwhelming due to mental illnesses.  The fatigue and lack of focus that comes with depression and the sensory and social issues inherent in autism are two excellent examples of the latter.  And again, placing oneself in stressful situations– as defined by the stress tolerance of the individual– with the expectation of attenuating or adjusting to them often creates a feedback loop in which stress exacerbates symptoms, causing mood swings, meltdowns, and hospitalization, which in turn cause more obstruction and stress.

We need to be unafraid to tell each other this.  “I can’t work” is not a dirty phrase.  It’s often a true one, and one that needs to be uttered; to be admitted, first of all to oneself.  Or whatever limitations are true for any given person.  “I can’t handle a large group of friends.”  “I can’t work overtime to secure a promotion.”  “I can’t keep up the grades for an honors degree.”  None of these should feel more shameful than admitting that you can’t work the assembly line because your arm is broken.  We should not be reluctant to refuse expectations that are not only unrealistic but harmful to our health.  In doing so, we could be setting ourselves back years, decades, on the path to the lifestyle that keeps us well and lets us be our best.

After more than ten years of scrambling to attain a bachelor’s degree, I am finally being forced to admit that I may not be capable of pursuing my long and resilient ambition to being highly educated and work in academia.  And I am deeply ashamed of the sense of release I feel at that admission, because two words run themselves on a ticker through my brain:  Giving up.  Giving up.  Giving up.  Society hates few things worse than a quitter, and that’s officially what I am becoming.

Yet if I wasn’t pushed into that shame, if I hadn’t forced myself down the same rocky path for so long, I might very well be healthier and happier than I am.  By dedicating the bulk of my energy to a suitably “brave” and “determined” goal, I deprived the rest of my life of much-needed care.  Without single-minded aspiration, I could never have gotten as far as I have.  But along the way, how much did I lose?  How many panic attacks and bouts of substance abuse did I push myself into with impending deadlines and ridiculous self-expectations?  How many six-month pitch black depressions did I trigger?  How much work on my parenting ability, my self-care, my home life did I brush off and throw away because I had “braver” things to worry about?

I’ve noticed a pattern lately.  Every day that I spend mindfully bonding with my son, cooking beautiful meals with him, doing crafts, talking about science and history and Scooby Doo, I feel like a little bit of some giant, gaping wound inside me heals up.  I feel stronger: less depressed, less anxious, less on edge; more confident, more ethical, more whole.  When my son’s not around, getting up early, exercising, washing the dishes, and sending a long email feels like a good morning.  Deep down, underneath the angst and shame this supposed time-wasting causes, I feel like a good person, and I feel genuine happiness, a feeling which until recently I’d kind of forgotten.  And I know that if, in the back of my mind, worries about achieving something more are present, I feel like nothing.  I am less successful at the things that keep me well, and still unsuccessful at the ones that were just never designed for someone like me.

So surely, to pursue something of questionable attainability at the cost of my health, my happiness, and my contribution to my family, is not nearly so much brave as foolish and irresponsible.

By this, I mean no disrespect to motivated people with disabilities who doggedly pursue whatever ambitions they possess.  They have a right to that lifestyle choice and I respect their perspective and achievements.  And some people are able to manage their disabilities in such a way that their balanced lifestyle can include paid work or full-time study; I bear them only good will.  All I want is to know that, likewise, my choice to drastically simplify my life and focus on the day-to-day is one that is respected and valued by others, disabled and not.  I want to be able to say to someone, “Today I took my son to practice soccer at the park, made dinner for the family, and wrote a blog post before going to bed,” with the same satisfaction with which I’d say my semester went well or I got a raise.

All in all, we should not ascribe traits like bravery based on the limited slice we see of others’ lives.  To deviate from the norm and succeed within the bounds of what your body and mind need is just as brave as to work your ass off for conventional achievements.

When all you know is what you see, you have no idea what someone goes through to get where they are.  You see a clean-cut version of me conscientiously studying Old Norse on my bus ride home, and you think, “There’s smart girl, a good student.”  You don’t know that I am at that moment trying to ignore heart palpitations and an encroaching migraine, and that when I get home I will pass by the convenience store and buy a bottle of vodka, which I will finish just in time to get three hours of sleep before my exam the next morning.  Conversely, you see me curled up on the couch for a Star Trek break in the middle of the day, and maybe you think, “She’s getting lazy.  This is just escapism.”  You don’t know that I am taking an hour to do something that makes me smile because my hands had been shaking, and that after relaxing and feeling better, I got up and spent another hour making flying paper dragons with my kid, and later that night I will enjoy a cozy meal with my partner and go to bed content.  Do I not have a right to that?  Is it right– is it good for anyone– that I should be pushed to bash my head against barriers instead of finding the beauty in where I am and making it the best it can be?

I am not prone to bragging, but I will say this:  I am accomplished.  You just don’t know at what.

Dysfunctional fairy tales, part two

There was a poor woman who ran a poor shop in a very poor, small village, far from anything.  She lived alone with her young son, John, who was strong and eager.  When John came of age, his mother, who had grown thin and feeble with little enough to eat, sat him down and said to him, “It is time for you to set off and seek your fortune in this wide world, for there is nothing in this poor village fit for a fine lad like you.”

So although he felt sorry to leave his home, and though he had not even a few coins to see him on his way, the boy did as he was told.  He set off alone, promising to return with wealth enough to see his mother through her old age in comfort.  He meant to come, after some days on the road, to the swollen river where the big barges came and went, and where he might gain passage– whither he knew not– for his labor.

On the first day of his journey John passed by a great manor on which a good many slaves and peasants were working to sow the season’s corn.  As the sun sank low, he stopped to greet a man who was wiping the sweat from his brow.

“Good day,” said John.  “Do you know of any house where I might spend the night?”

“Aye,” said the man, and pointed to the small shack at the end of the field.  “My wife will give you a bed, and a good meal, what’s more.”

“But how can I repay your kindness?”  asked John.

“Work with me tomorrow,” said the man.  “My wife and eldest son would work beside me, but he is laid up ill and shivering and she must tend to him.  Without help I won’t sow our fields to feed our lord and little ones come harvest.”

John agreed to this, and for seven days he stayed and slept and ate with the virgater’s family and worked beside him in the fields.  It was hard work in the hot sun, and at the end of the seven days, when the seeds were sown, John was brown and tough as a piece of dried meat.  He thanked the virgater and his wife kindly, tipped his hat to them, and set off toward the river.

That evening John was passing through a woodland and, as darkness approached, he came to the hovel of a hunter.  He knocked on the low, crooked door, and was answered by a man with a grizzled beard.  “Good day,” said John.  “I am passing by on my way to the river.  Might I spend this night with you?”

“Aye, said the man. “Come in and share my dinner, though I have but little to give.”

“But how can I repay your kindness?” asked John.

“Hunt with me tomorrow,” said the man.  “I am old and can not carry so much or shoot so well as I once could.”

John agreed to this, and for seven days he stayed and slept and ate with the old hunter, and hunted by his side in the wood.  It was hard work, but at the end of the seven days he could fell a bird with one arrow as it flew.  The hunter gave John a stout short bow and a quiver of arrows, saying, “Welcome though your company may be, you cannot linger here longer.  You have your own journey to attend to.  May these be of use to you.”

John thanked the man kindly, tipped his hat to him, and set off again toward the river.

That evening, in a quiet meadow, John met a beautiful, wistful old woman plucking ripe berries from a thorny bramble patch.  “Good evening,” he said.  “Good lady”– for such he called her, though she was dressed in rags, out of politeness– “is there a village near where I might spend the night?”

“There is no village you might reach tonight,” she answered, “nor any home but mine.  But you are welcome to share my hearth and floor.”

“But how can I repay your kindness?” asked John.

“Speak not of that,” she said, “for it is a kindness to me that I should have your company.  No soul has passed this way in many a year.  Stay as long as you can.”

So John stayed with the old woman for seven days, and they ate and drank the good things of the meadow and the forest.  At the end of the seven days, John said to the old woman, “I must be on my way, good lady, for I have my own fortune to seek, for the sake of my old mother.”

“I see that,” she said.  “I have a gift for you before you go, if you will accept it.  Show me your hand.”  She traced over and over the deep creases on the palms.  At last she sighed and smiled sadly.  “You will find what you seek on the water.  You will find great treasure and at last you will return to your mother and your home; but before that, a great love will enter your heart, that you cannot deny and that will remain til the end of your days.”

Pleased with this, John thannked the old woman kindly and went on his way, and the very next day he came to the wide, yellow river, with boats and barges going always up and down it and people of all sorts teeming at its banks.  As he walked along the bank, a big hearty fellow called out to him, “You!  Boy!  Looking for work?”

“I am John,” said John, stopping to greet the man.  “My mother has sent me to seek my fortune.  I will take what work you will offer me.”

“I serve Prince Hewlett, of whom I am sure you have heard much,” said the man.  John had not, so was silent, but the man went on anyway.  “I am the captain of his boat.  The prince is seeking a trusty valet for his journey north to the Summer Palace.  Have you done such work before?”

“Never,” said John truthfully, “but once shown I learn quickly and work hard.”

As he spoke another man stepped up beside him.  He was little older than John himself, but tall, and he smelled of flowers John had never smelled before, and he was bedecked in full, flowing robes that shimmered softly in the watery sun.  This, John realized, was Prince Hewlett.

“Show me your hands,” said the prince to John, and his voice was like the wind in the top branches of the forest or the rain on the golden manor fields.

Speechless, John complied, holding out both hands palms up, bashful of their cracks, scrapes and calluses earned in his journey.  But the prince smiled and took John’s hands in his own white, many-ringed ones.  “Good honest hands,” he said.  “Here is a boy who will work hard and ask for little, and knows nothing of intrigue.  You will be my valet.  Come.”

The prince and the captain led John aboard the largest, most beautiful boat at the pier.  “You will sleep here, at the foot of my bed,” said the prince, showing John a cabin as well-dressed as any palace chamber.  “You will bathe and dress me in the morning and the evening, and taste my food before me.  You will serve me as I need at any hour of day or night.  At the end of our journey, if you have served me well you may stay on in my palace and journey home with me to my Capital when autumn comes.  If instead you must away, I will send you with a bag of gold on each arm.  But if you should betray me, the worst will befall you.  What say you?”

John readily assented.  “I will serve you well, dear Prince, wherever you fare,” and he bowed so low that his nose nearly touched his knees; for poor boy though he might be his mother had taught him well.

So that night he helped the prince undress.  He marveled at the touch of the silken robes as light as moonlight, and still more at the skin of the prince, as supple and fragrant as a woman’s breast, against which his own hands felt coarse and rough; but the prince did not complain.  Then John bathed him all over in rosewater and rubbed him with the oil that smelled of flowers he had never smelled before, not daring to ask what it was, and he dressed him in his nightclothes, and curled up by the foot of the prince’s bed.

Although summer was nearing, it was cold at night in the high hills where the river wound its way north, and after midnight the prince called out to John.  John woke right away.  “What is it, Prince?” he asked.

“I am cold,” said the prince, “and these blankets do not warm me.  Come into my bed and lend me the heat of your body.”

John did as the prince asked, and all that night and each night after he slept against the prince in his downy bed.  And every day he dressed and bathed the prince, and at every mealtime he tasted the prince’s food lest it should harm him.

But one day the captain of the boat brought a bottle of golden liquor from his own stuff, and told John, “This is for the prince alone.  It is too rich for your simple mouth.”  John told the prince what the captain had said, and the prince saw wisdom in it and took a dram of the golden liquor.  But as soon as he had done so, he spit it out and threw the glass on the floor where it shattered.  “Do you think one such as me does not know the bitterness of betrayal?”  he cried.  “Boy, chain up this rogue who has tried to poison your prince and master!”

John tried to do as he was told, but the captain was too quick for him, and leapt behind the prince, holding his blade to the soft white throat so that a single drop of blood ran down it.  “You’re a good lad, John,” growled the captain, “but you know not who you serve.  Go now with no enmity between us, and let be what is too large for you to fathom.”

So John made as if to do that captain’s bidding, but quick as a wink he grasped the bow that the hunter had given him, which he carried on his back at all times, and he shot the captain square in the left eyeball, for that was how well he had learned to shoot.

Needless to say, the prince thanked John greatly for his service, and filled John’s pockets with gold and silver coins that had been owed the boat captain, until they clanked and chaffed against John’s legs.  The crew took the boat onward, and that night John slept in the prince’s bed as always.  But that night he found he could not sleep.

“O Prince,” he whispered, “are you awake?”

“What is it, John?”  asked the prince, alarmed.  “Is something the matter?”

“Nothing,” said John.  “Only, I wonder if you still wish me to serve on as your valet at your journey’s end.”

“Certainly,” said the prince.  “Is that not what I promised, and do I not keep my word?”

“Then I am glad,” said John, “for I was frightened today lest I lose you.”  And all of a sudden without meaning to he kissed the prince on his lips.

Then the prince rose up in anger, and threw off the covers from his bed.  “What devilry is this,” he shrieked, “that from all quarters I am taken unawares?  Leave me, foul fiend, or I will kill you with my own blade!”  And he drew a gleaming dagger from beneath his pillow, which John had never seen before.

John wept and begged his pardon, but the prince would hear none of it, and he called his crew and they threw John over the side of the boat with curses aplenty.

Weighed down by the gold and silver still in his pockets, John sank a while in the muddy yellow water, and at last he pulled himself, dripping and reeking, onto the black shore.  He began to walk slowly back as he had come, down the shore of the river and back across the forest and the meadow and the fields, and he met a beggar to whom he gave all the coins.  Then he came home to his mother, and there I daresay he lives still, now that she has passed away, alone, a small farmer in a small village, far from the palace and the river.

Eat mor headcheese

I am now on Twitter.  Although I can’t promise my usual flights of enlightenment in 144 characters, I can now brighten your day more often.  Yay!  Follow me:  @mheadcheese