[humanser] Disabilities Story

[JD Townsend]

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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