[humanser] Disabilities Story

[Ericka]

This is very well written JD. Thank you so much for sharing I understand her completely.

Ericka Short

from my iPhone 6s

> On Feb 16, 2017, at 9:03 PM, JD Townsend via HumanSer <humanser at nfbnet.org> wrote:
> 
> 
> 
> 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
> <JDTownsend.vcf>
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