[humanser] Disabilities Story

[Mary Ann Robinson]

JD, thank you for sharing this story.

Mary Ann Robinson
----- Original Message ----- 
From: "JD Townsend via HumanSer" <humanser at nfbnet.org>
To: "Human Services Mailing List" <humanser at nfbnet.org>
Cc: "JD Townsend" <43210 at bellsouth.net>
Sent: Thursday, February 16, 2017 10:03 PM
Subject: [humanser] Disabilities Story




DISABILITY.  Love, Eventually
By ONA GRITZ
Ona Gritz is the author of 'On the Whole: A Story of Mothering and 
Disability,' a
memoir, and 'Geode,' a collection of poems

One night when I
was very young, I lay in my bed across from my older sister's and
described what I planned to look like when I grew up.  My wavy
brown hair would be straight and blond.  My eyes, now the color
of oversteeped tea, would turn blue.  I wore a leg brace to bed
in those days, a metal rod that buckled with a leather strap
below my knee and attached to an ankle-high shoe.  Though I felt
the weight of this contraption as I spoke, and I knew I limped
because the meanest girl on our block had told me, it went
without saying that the beautiful future me would walk, and even
run, with grace.

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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