OK, perhaps a bit of backtracking is in order. When I was in 5th Grade, a group of ignorant boys mimicked my walking in a school hallway, changing this young girl’s life. From that moment, I began to embrace an irrational belief that my Dystonia was somehow distasteful to the opposite sex, reinforced over time by a paucity of male friends, dates and boyfriends. Naturally, I blamed Dystonia, the obvious scapegoat for anything that pushed my life outside the “normalcy” I craved.
Fortunately, my seemingly reasonable but foolish presumptions were counterbalanced by an imaginary prince who whisked me away from Scarsdale on his white horse – or via white Corvette. In the plot line of this fairy tale, my gallant chivalrously brushed aside my health issues upon gazing into my eyes, a delightful fantasy that failed to procure me a social life.
Notwithstanding a medical lifetime sentence imposed at age 8-1/2, a troop of real world princes busted me out of my childhood prison, demonstrating that eating Quiche and sensitivity to Dystonia are a real man’s prerogatives. Now I take heart in guys who treasure books for the reading and understand a wealth of imperfections keeps life interesting.
I leant a heavy hand constructing the walls that held me captive. No matter our objective circumstance, we imprison ourselves in the subjective images we embrace. The key to living with – or without – disability is to espouse a “healthy” self-view and carry faith in life’s possibilities. I ever take heart my Cinderella ending lingers within arm’s reach.
Tuesday I hosted a WEGO Health Chat addressing Sexuality & Disability but the truth is that sexuality can’t be generalized to such a heterogeneous group. The disabled and chronically ill constitute a complex diversity of humanity. We’re male, female, gay, straight, young, old and in between. When it comes to the passion department, urges and desires are equal opportunity employers. Further, life’s challenges fail to discriminate: anyone can have a trying day that inhibits the libido from coming out to play.
As for my physical realities, they’re part of the package, as much for me as everyone else, asserting enticing attractions as well as inconvenient complications. Engaging in heated flirtation while battling a slow-moving tongue may induce a feeling of “mum’s the word,” but a searing gaze recharges my mojo. Anyway, isn’t life all about point of view? Walking is my attempt to exercise control over a brigade of chronically misbehaving muscles that refuse to execute their assignments. Sauntering is embracing a saucy step with a womanly swagger – taking my derrière for an alluring ride. My Dystonia is actually an unwitting ally, initiating a turn of hip that lifts my behind in a fetching upswing!
We all face an uphill battle when we’re constantly besieged with the impossibly idealized body so all I can say is pack confidence. Owning your body with all its bumps and curves goes a long way towards owning that stride! The bigger picture is that we don’t simply access sexuality from our physical selves and a perfect human form isn’t a prerequisite. Glorified images of feminine beauty and masculine virility may set us aflutter, but they fall short of communicating the resounding meatiness of our existence. And for the record, real men…and women sit in wheelchairs. Body parts become incapacitated, not our thoughts and imaginations. The key to passion and sensuality rests within our hearts and minds.
I take my cues from the feelings a man stirs inside me and the ideas I locate within myself. For me, the core of being a woman is practicing compassion, expressing affection, finding my inner truths, and connecting with my deepest desires…which I’ll gladly set on the table with the right guy!
For further thoughts on the topic, visit WEGO Health’s recap of my Twitter Chat at http://blog.wegohealth.com/2013/02/13/hachat-recap-sexuality-disability/.
Don’t miss this article from The Guardian: http://www.guardian.co.uk/society/2013/feb/12/disabled-people-valid-sexual-partners.
Whoever said the way to a man’s heart is through his stomach got things wrong: it’s through his children.
I gave my heart to an amazing guy and he gave me his weekends with his kids. I climbed mountains to make an impression, taking untold abuse at the indoor playground in McDonald’s, bribing them with cookies and fading into an insignificant comma to make it all about them. My efforts didn’t do much to enhance my position on their popularity meter. Worse, I lived in constant trepidation of an insensitive observation about my Dystonia in a jarring reawakening of my childhood phobias. I wasn’t disappointed. While I can usually count on the politeness of adults, kids nose their way into my imperfections with a stream-of-consciousness bluntness: “You talk like your mouth’s full of marbles;” “I can’t understand anything you say…”
Packing years of therapy under my belt, I know these to be the ignorant squeals of piglets but my insistent inner child still longs for approval and dreads the punch packed by the uncensored honesty of youth. Want to know if that dress REALLY makes you look fat? Ask the kid next door!
The online dating roller coaster can lurch chills down the spine of the most seasoned Lolita, which I most certainly am not. Throwing my profile into the proverbial haystack hoping to find the needle of my dreams is an exercise of patience on the edge of insanity. Typically, my inbox is populated with suitors I’ll categorize as spam.
As you can see from this blog, I recently joined the school of “Laying It On The Line.” I aspire to shout my Dystonia from every street corner and rooftop…and also on my JDate public offering. While awaiting approval of a new essay featuring You Know Who, I broached my approach with friends, who stood united in their negative feedback. I guess the online dating marketplace isn’t ready for full disease disclosure, which would more than separate the princes from the frogs. Grudgingly, I concede sharing health details is best practiced face to face after we’ve discerned a genuine mutual interest.
On the rare occasions when I stumble upon a prospective Mr. Right, I harness my inclination to unload my Dystonia during our getting to know you minutia. Part of me is thrilled to live such a fanciful existence. No speaking, no walking, if only we could flip cyber reality with everyday life! Eden doesn’t last for long. After a few paragraphs of swordplay, most men are eager to leap to the phone and hear my voice, producing an explosion of panic that’s a 50 lb. rock at the pit of my stomach. Used to flipping cushy sentences in emails and IMs, telephone talk is a venture into an uncomfortable world.
When required to fast forward the inevitable, I prefer making the call myself, allowing the illusion of control as I improve my speech in insignificant increments with a ridiculous routine of nasal hydration, environmental manipulation, vocal preparation and lactose deprivation. Invariably, I reach their voicemail. Shouldn’t have sacrificed that latte at Starbucks.
All this self-created craziness is wrought with irony. Even when I bring up my speech, I’m sharing the unavoidably obvious. My practical purpose is to halt arbitrary conclusions in their tracks and interpose the stamp of my official record. Let’s face reality. If I don’t empower telephone beaux to serenade me with a choral refrain of “what did you say,” I’m wasting unnecessary efforts impressing my phone!