[humanser] Disabilities Story

Wed Dec 20 20:21:51 UTC 2017

Good morning, JD,

Perhaps, my having had bilateral blastoma as a toddler, for as long 
as I can remember, has rendered me drawn to every situation's deviant 
presence.Remember, in sociological terms,  deviance merely refers to 
he who fills the non-normative role and is present where ever human 
animals congregate. I like to say, if someone farts in an elevator, 
he is that collectivity's social deviant. Like deviants of 
yesteryear, it is a strong connection, consisting of mutual respect 
that solidify's bonds between deviants. This verity has become so 
much more naked to me  since hazarding upon a mysterious convirgence 
between people living without a baseline like ocular vision and folk 
living beyond 4-walled structures, homeless people. I found it 
particularly striking that, whenever I am hanging out with my 
friends, there seems to be an unnamed and  unspoken but nevertheless 
palpable   sense of knowing and mutual understanding regarding the 
way we live. So what is this mysterious knowing all about? Much of it 
probably involves the fact that due to my roommate and my spinning 
schedule (most mornings) it requires that we occupy similar 
facilities I.E. bus stops and the local streets. Also, amongst 
house-less cultures it is a come-as-you-are  kind of scene, so none 
of that justifying your personal right as a blind person just to 
exist. Mostly, people don't ask, and for the most part don't want to 
know your past. we are also brought together by Mary Jane, the woman 
who brings light to the sight-less and a sense of place to the 
house-less, so our paths cross in many ways namely, living despite 
being yoked to a debilitating stigma, you know, where nothing you can 
ever do in your life alters what society as a whole or an individual 
will ever validate. House-lessfolk are the urban area's gardian 
angels, too, that is, they are forever survailing the area with 
nothing but unaccounted time. From what I've found out, watching, 
watching, the whole downtown area. They seem to know people's rhythms 
(particularly that of the neighborhood's sore thumb, like me, but 
what fundamentally bridges both ways of being is living in a 
full-throated way in spite of being separated from a presumed 
baseline like eyesight or a 4-walled structure in which to collect 
material or reliable shelter. House-less people, in fact, additional 
to designated state and private shelters, many of my friends are used 
to living out of their backpacks  and can set up camp anywhere.
This story in particular spoke to the faculties from which I am 
compeled to reacquaint myself after becoming brain damaged 13 years ago.

When your experience plays out along side those of house-less people, 
you must be ready and, in most cases willing to adapt to obscure 
situations consistant with living hand to mouth. This, of course, is 
not to say house-lessness is an undesirable way to live. Generally 
speaking, it's not. I am in a relationship with a resident and have 
known him in terms that are familiar to him and now are familiar to 
me.  Most residents live in a completely self-contained way, 
sometimes taking on projects to fill some of that plentiful, 
unaccounted time independent of human services. This means that many 
people are mentally undiagnosed and therefore untreated. They don't 
need meds and they don't need diagnosis.
Car from Berkeley

My sister listened without comment.  She'd taught me to put
>pajama bottoms on my head so that when we danced like go-go girls
>it felt like we had long, swingy hair, and to dress our Barbies,
>with their shapely symmetrical legs, in fashionable outfits for
>their dates with G.I.  Joe and Ken.  The truest world I knew was
>the one she and I dreamed up.  It made perfect sense to me that
>who we'd get to be in the mystical world of adulthood was
>completely up to us..
>
>I have a form of cerebral palsy known as right hemiplegia, which
>essentially means only half my body is affected by the
>disability.  My right limbs are tight, the muscles
>underdeveloped, and the fingers of that hand lack the dexterity
>and fine motor skills of those on my left.  Years ago, I read an
>article about a rather new-age method for working with hemiplegic
>children.  It suggested that while left hemiplegics respond well
>to straightforward instruction ('Raise your arm as best you
>can'), right hemiplegics do better with more poetic descriptions
>('Imagine you're reaching for the stars').  This is due to
>differences between the left brain and right brain.  Left
>hemiplegics have undamaged left hemispheres and tend to be
>pragmatic.  But those of us with the right-side version depend on
>our undamaged, dreamy and artistic right hemispheres.
>
>My cerebral palsy is relatively mild.  I have clear speech, and
>though I walk slowly and awkwardly, I get around fine.  In my
>20s, if I considered my C.P.  at all, it was through the lens of
>vanity.  How noticeable was my limp? Was I pretty despite it? The
>answer, I assumed, was in the response I got from men.  It was
>hard to decode.  Apparently I was appealing enough to sleep with
>but not to be picked as a girlfriend.
>
>Then I met a young man.  He was handsome, athletic and crazy
>about me.  We moved in together, got engaged, and my old habit of
>magical thinking surfaced.  I believed his love canceled out my
>disability.  Unfortunately, we had little in common.  He liked
>the thrum and excitement of clubs.  I preferred small gatherings
>and intimate conversation.  He was happiest on a mountain bike.
>I was happiest at home with a book.  Because of our disparate
>interests, we maintained largely separate social lives.  I didn't
>actually mind this.  My free time was given over to girlfriends,
>just like when I was single.  Only now I had the perk of coming
>home to a handsome, affectionate man.
>
>One of my closest friends was, and remains, a woman I came to
>know shortly before I was married.  Hope was my first friend with
>cerebral palsy.  Our connection was immediate and intense, fueled
>as it was by a sense of recognition that my imminent marriage
>lacked.  I had other friends who 'got me' in a visceral,
>finish-each-other's-sentences kind of way.  But only Hope could
>finish the sentences I'd never before said aloud, the ones about
>how it felt to live in a nonnormative body.  Before we met,
>neither of us knew we craved those conversations, but we were
>starved for them.  Though we share many interests, it would be
>weeks before we could tear ourselves away from the topic of
>disability long enough to discover what they were.
>
>Without realizing it, I began to live a kind of split existence.
>By loving Hope I was learning to love a part of myself I'd
>deliberately ignored.  Still, I continued to rely on the myth
>that being married to an able-bodied man meant I wasn't truly
>disabled.  Only now do I see that he gave me a safe perch from
>which to peek at my identity as a disabled woman.  I could take
>it on briefly, explore how it felt to claim it, and then go home
>to my real life.  That is, my life of pretend.
>
>Reality finally hit when we had a child.  My husband eventually
>developed a very loving relationship with our son, but he wasn't
>exactly hands-on in the beginning.  Before Ethan's birth I hadn't
>understood that parenting is physically demanding work.  Caring
>for a newborn, especially, requires strength, balance and an
>ambidexterity I simply don't have.  I couldn't bathe Ethan
>safely, carry him on stairs or even sip from a water glass while
>he nursed if his head rested on my good arm.  Finally, I was
>forced to acknowledge that my C.P.  is more than a cosmetic
>issue.  Some tasks I could manage by making adaptations, but for
>many I needed to ask for help.
>
>At first, I felt deeply embarrassed by what I perceived as my
>ineptitude.  But at some point, while I was busy figuring out
>ways to get the work done, I forgot about the shame.
>
>By the time Ethan turned 3, the physical demands of mothering had
>lessened and I could focus on the parts that came easily --
>talking with him, reading together, entering into his imaginary
>worlds.  A year later, my husband and I divorced.  Thankfully, by
>then I understood that my tie to him wasn't what made me whole.
>
>In a long-ago interview with Bill Moyers, Maya Angelou revealed
>her theory that most women marry other people's husbands.  She
>didn't elaborate, but I immediately understood.  Out of
>hopefulness, impatience, insecurity or for a thousand other
>reasons, we too often rush into relationships that are poor fits
>for us, robbing our partners and ourselves of more promising
>connections.  It struck me as likely that those of us with
>disabilities are especially susceptible to this.
>
>'I have finally married my own husband,' Ms.  Angelou went on to
>say.
>
>Many years after my first marriage, so did I.
>
>Dan and I met in a poetry workshop.
>
>'Of course,' Hope said, when I told her that my new love was not
>only a fellow writer, but someone with a disability.  'It's like
>you guys are the same person, only one's male and one's female,'
>said Ethan -- not entirely as a compliment -- who was 8 at the
>time.
>
>It's true that Dan and I are very similar.  We're both romantics
>yet also fiercely independent.  We're introspective to the point
>of obsession.  Though he's a decade older, we share a love for
>the music from his teenage years.  And long before we met, many
>of the same novels and poetry books lined our shelves.
>
>As for our disabilities, they're nothing alike.  Dan was born
>blind, and that library of his is largely in Braille and audio.
>He sees light, but no shapes or objects.
>
>'Does the light have a color? I asked when first getting to know
>him.  But, of course, since light is all he can see, he has no
>way to know.
>
>Dan confided to me that back in high school and college, he knew
>how to use a cane but chose to walk without one in an attempt to
>blend in.  Back then, he also sought able, sighted women rumored
>to be beautiful.  When I shared my stories in kind, I was struck,
>just as I'd once been with Hope, by how little had to be
>explained.  Clearly, though our disabilities are different, the
>emotions and their residue are much the same.
>
>These days, disability is a mere factor in our daily routines.
>It's there when I need to proofread Dan's Word documents for
>formatting inconsistencies or tell him which bottle contains
>Tylenol and which the dog's allergy meds, just as it is when he
>has to climb ladders to change our smoke alarm batteries or hold
>me upright as we walk on ice-slick streets.  I read the mail to
>Dan, of course, but also poems and stories.  He reads to me too,
>running his fingers along pages of Braille as though skimming
>them through water.  And yes, his touch on my skin is just as
>attentive and skilled.
>
>Disability has also earned a central place in our creative work.
>We've both written extensively about living in these particular
>bodies of ours, and spoken at universities and on panels about
>disability poetics.  Many of our friends are artists and writers
>with disabilities.  It's a rich life, one I never could've
>imagined despite my famously active imagination.
>
>Still, had the possibility of this loving bi-disability marriage
>presented itself to us years earlier, I don't think either of us
>would have been ready.  We needed the right combination of
>fallacies, wrong turns and formative relationships to lead each
>of us exactly here.
>
>Disability is a weekly series of essays, art and opinion by and
>about people living with disabilities.  The entire series can be
>found here.  To reach the editors or submit an essay for
>consideration, write opinionator at nytimes.com and include
>'Disability' in the subject field.
>
>
>
>
>JD Townsend LCSW
>Helping the light dependent to see.
>Daytona Beach, Earth, Sol System
>
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