Category Compensating

RUNNING BLIND

Kathe Skinner, M.A., L.M.F.T. Leave a comment

guilhermina guide 3

Super-star athletes are polishing their personas with the advent of the Summer Olympics to be held in Rio de Janeiro in 2016.  One of them, Jamaican mega-medal winner Usain Bolt, has the gracefulness of a natural athlete. With his perpetual smile and generally good nature, Bolt is no pushover.

One doesn’t get the impression that Usain Bolt would promote something disagreeable.

Despite his gifts, or maybe because of them, Bolt also demonstrates a remarkably generous spirit, e.g., his 2012 embrace of double-amputee Oscar Pistorius, who competed against Bolt.

At a recent promo event, Bolt paired with Brazilian Paralympic multi-medalist Terezinha Guilhermina as her guide runner. Vision-impaired para-athletes compete under strict guidelines that may include use of sighted guide runners. Guilhermina trains and competes with guide Guilherme Soares de Santana; tethered at the wrist, she runs blindfolded as they match each other in speed and timing.

This high-speed dance is like a successful relationship: Trust is essential.  Good communication is quick but subtle, successful only with lots of practice.  Even when a compatible partner is found — no easy task in itself — the tasks are twice as difficult, twice as demanding.

If you’ve ever run a playground race with one leg joined to another person’s you begin to understand how tough it is to run as one.

Even so, Bolt expressed concern that Guilhermina would fall over or be unable to run fast enough. Both fears were unfounded.

Like running in synch, when an able-bodied athlete joins with a para-athlete, one shadows the other. Both understand the effort, sacrifice, and ability that has brought them to the medal podium.  As in a good marriage, there is mutual admiration and respect; knowledge that the differences are not diminishments.

Now for the preachy part:  There are two separate and unequal worlds when it comes to sport.  Usain Bolt, personable as he is, sells because of his able-bodied ability, not his smile.  Paralympic athletes sell to the larger audience only when paired with Olympic athletes; it doesn’t matter that their talent, drive, focus, and commitment to excellence are the same.

“Blade runner” Arthur Pistorius got more ink because of his fall from grace than from his rise to it.

Societal disequity is an old story and not just one about disability. Overcoming innate human suspicion and dislike of what is different requires conscious and concerted effort.  The nudge may come from decades’ worth of disabled vets with their can-do mentality, greater numbers, and the societal bequeathing of a high moral ground.

Personally, I’ll take it any way I can get it:  If the result to being paired with an able-bodied celebrity is lasting inclusion and a broader definition of human value, then drop the red flag and let the sports begin.

Kathe Skinner is a Marriage & Family Therapist whose private practice focuses on couples, especially those whose relationship is complicated by invisible or visible disability.  Diagnosed with multiple sclerosis for nearly 40 years and understands that athletes go beyond themselves to compete.  With two world-class cat nappers, Petey and Lucy, Kathe and husband David live in Colorado where she doesn’t ski.

Read more about their Couples Communication Workshops at www.BeingHeardNow.com.  While you’re at it, check out our newest site, www.CouplesWhoTalk.com.

THAT GIRL KEEPS FALLING ON HER BUTT

Kathe Skinner, M.A., L.M.F.T. 2 Comments

fall-down-stairs.jpgMy balance, isn’t.

So when I head straight toward the bushes at the entrance to my building it isn’t surprising.

Bushes are a trigger in picturing my first (and only) experience as a new MSer in an MS support group.   Recommended by my neurologist, the group experience was meant to help me cope with the way-past-due-diagnosis of my disease.

Instead, it freaked me out.

Walkers, wheelchairs, canes, crutches – and me, invisibly disabled, in high heels looking at a future unable to wear them.

Big time downer.

Especially when a guy lost his balance and landed on his butt in a bush. That he laughed it off was horrifying.

I understand, now, the reason he laughed.  Not only is laughing at the faux pas around the commonplace common, but situations that elicit that kind of response are also all too common.

The reality he must’ve experienced then is one I now share.  Today I laugh, too.  Because it’s truly comical at times and also because laughter is socially reassuring.  “It’s alright, folks.  I’m alright.  Nothing to see here, move along.”

Knock wood, I’ve yet to experience anything dire in my navigational mistakes.  Embarrassment to be impaired in public is what hurts. Most of us don’t know what to do in a situation like that.  I put lots of effort into looking unimpaired, but when I catch sight of myself in a shop mirror, the reality of how I walk, for example, isn’t normal at all. 

When I use an assistive device, a rollator in my case, parents scold their children for staring.  I’ve yet to hear mommy or daddy use the opportunity as a teaching moment to talk about disability; rather it’s “don’t stare” before hurrying away.  No wonder society hasn’t made much progress in accepting the disabled community who, except to children, remain largely invisible.

Recently, Disability.gov blogged an article about steps to take when being newly disabled.

It’s worth a read, especially if you’re not.

Specializing in couples work, Kathe Skinner is a Colorado Marriage & Family Therapist and Relationship Specialist.  She works especially those couples where invisible disability is present.   For over 10 years, she and husband, David, have been Certified Instructors for Interpersonal Communication Programs .  Find the schedule for their next Couple Communication Workshop at http://www.beingheardnow.com© 2014 Being Heard

How Come It’s “We’re Pregnant” But It’s Not “We’re Disabled”?

Kathe Skinner, M.A., L.M.F.T. 1 Comment

I don’t know when it became fashionable to identify pregnancy as an adventure à deux.  It always seemed lopsided that pregnancy excluded men from throwing up, having swollen ankles and shrewish moods.  I’m not even talking about all those forever changes like stretch marks, a bigger butt, and wider hips.  With the possibility of gestational diabetes, postpartum depression, or miscarriage, the adventure becomes a challenge, albeit one that affects the relationship although it is physically experienced only by the woman.

Not to make it one-sided, men’s experiences are extraordinary, too, and may include being the target of a woman’s whacky moods or being the late-night junk food scrounger.  For guys, it hits that the two of you are now a family, with all the attendant expectations to be the one who forevermore protects and provides.

Without a doubt there are many, many women for whom pregnancy is a delightful experience. The glowing, the growing, and giving life is an experience like no other.  Pregnant women and moms belong to an exclusive club that has unbend-able  membership rules.  So even if it was the two of you being pregnant, only one of you, in the strictest sense, is a mom.

It’s the same when a woman is disabled or chronically ill.  Only one of you is impaired even while both of you — your relationship — can be impaired.   Having an invisible disability can be the worst of all.

Our society looks for proof; needs to name it; needs to touch it or otherwise experience its reality.  You can’t be “a little bit pregnant”; you either are or you’re not.  Pee on a stick and you prove it.  With invisible disabilities, there’s no pee test.  For some people, taking it on faith is harder than believing that what isn’t seen is true.  For example, not being able to prove the existence of god doesn’t mean god doesn’t exist.  Obviously, it’s the emotion surrounding belief that counts; to disbelieve or doubt a person’s physical or emotional perceptions is tantamount to discrediting someone’s very existence.  The truth of it is immaterial, while the emotion surrounding such thoughts is what counts.  The thoughts may even be rooted in jealousy of a sort – “What, so you get a break but I don’t?”  “Buck up, you’re just being lazy.”  “I worked all day but I still have to make dinner and do the laundry and get the kids to bed before I can sit down and catch my breath and where are you? in bed.”

Quantification when invisible disability is present requires a different yardstick but most of all it requires belief, support, and compassion.

Adding a stress load to any system that is already compromised results in a predictable, and usually disastrous, outcome (think of how a building with cracks in the foundation responds to an earthquake).  The same thing happens when an already dysfunctional body system is unable to respond well when stressors are piled on.  Such stressors may include walking through a mall or having relationship difficulties.

“We’re pregnant” or “we’re disabled” is an implicit bonding between partners.  Life-changing events happen from which there is no return.  Legal sanctions apply in both situations:  the 20% of women, nationwide, who are disabled are entitled to lifetime support; children until they reach the age of majority.  Society doesn’t seem to have recognized that the “we” of marriage with children and the “we” of disability in a relationship are the same thing.

To say “we’re disabled” says that both partners are in it together, that there is emotional and physical support of the partner who is less capacitated. Pregnancy usually involves the active participation of both partners while acquiring disability isn’t chosen by either partner.  Parenthood never ends, just as disability does not; a major difference is in the expected trajectory – that parenting gets more pleasurable once the nest is empty, while disability often does the opposite.  Disability is different in that there is no consent, no pre-planning, and certainly no enjoyment in acquiring the condition.

Kathe Skinner is a Relationship Coach in private practice.   Specializing in relationships, especially those with invisible disability in the mix, she offers both in-person and web-based programs for couples.  See http://www.BeingHeardNow.com to find the right program for you!

©Kathe Skinner, 2012