PISTORIUS GUILTY OF MURDER? SAY IT ISN’T SO.

While apartheid has been legally abandoned in South Africa, it can still be a racially uneasy place.  But some questions cut across racial lines:  Is Oscar Pistorius guilty of murder?

It was a made-for-television story starring Oscar Pistorius, a double amputee running on bladed “legs” in last summer’s Olympic Games, and his girlfriend, Reeva Steenkamp, a beautiful model.  Life in a luxurious gated community.  Fame, wanted or not, right up there with South Africa’s idolized soccer players, Bafana Bafana (The Boys).

Think about it – a man who by anyone’s definition is disabled participating in the Olympics, traditionally a place where only legends Pistorius blade runner
belong:  the fastest and most durable; the strongest; people who soar highest and go furthest; who combine talent with heart and passion.  Athletes with demonstrated ability to endure and transcend pain and to remain focused despite it.

Unique in the world, Olympians are the best of the nations that send them.  World-class.  And Oscar Pistorius belonged.

Even so, efforts were made five years ago to ban him from competing with the big boys because, get this, his so-called “cheetah legs” gave him an unfair advantage.

Funny that able-bodied runners would be threatened by the introduction into their midst of someone with no legs.  You can’t make this stuff up.  Legs that were replaced not by bionic ones, but by artificial ones.  Oscar didn’t flip a switch and go smokin’ down the track like some crazed stock car.  He never cruised into first place.  His swiftness wasn’t accounted for by Mercury-like wings affixed to his artificial feet.  Like every other athlete, he earned the right to run.

On Valentine’s Day, Oscar Pistorius is said to have murdered Reeva Steenkamp.

For me, the Pistorius story is especially tragic.

I’d probably win in Vegas betting that Oscar Pistorius never intended to be a symbol for many who are disabled.  But he was.

It was 2012, mid-summer in London, and the media couldn’t ignore the runner’s Cinderella story.  In the final heat, Pistorius ran the 400 meter against record-holder Kirani James.  Their exchange of name bibs and embrace at the end of the race was moving; it spoke of mutual respect and the honor James felt to share the track with such a determined, worthy, and ground-breaking opponent.  I’d like to think it was James’s way of giving Pistorius the keys to the clubhouse, heretofore for the able-bodied only.  Irony of ironies, James is black; Pistorius is white.

Despite this Olympic nod, the Paralympics, which followed, were not televised (not that I could find, anyway.)

Never meaning to, Pistorius put disability smack dab in the faces of people watching at home.  There’s always been an element of able-bodied gawking at the disabled; a “somewhere else but not in my neighborhood” flavor.  The South African athlete brought it home to their neighborhoods, taking it out of the invisible realm of the Paralympics to the center stage of London in the summer of 2012.

Pistorius generated pride when he won and even when he lost, and the tears that often accompany such moments.  He was a winner in a world that often deems the disabled losers.

Pistorius bore a dignity in doing his job and doing it exquisitely.

Pistorius was modest in his remarkable accomplishments.stamp, portugal, paralympic, disabled athletes, runner, disabled

Pistorius never sought the limelight; he wasn’t boastful or militant.

And maybe that’s why the emotion Pistorius generated for me, as a disabled woman working with others who are disabled, was so great.  His victory was not for any cause, although I wanted it to be.  I wanted his courage to be the stuff of film, like the young Patty Duke (herself disabled with bi-polar disorder) as Helen Keller in “The Miracle Worker”.  Or Tommy, the pinball wizard of Pete Townshend’s rock opera.  Of politics, like President Franklin Roosevelt or U.S. Senator Max Cleland.

Heroism is rarely sought by heroes.  We make heroes because we need them to lift us from our realities.  Heroes overcome where we haven’t been able to.  They’re the youngsters still alive in our fantasies, reading comics and surmounting unfairness with a dexterity we only dream about.  I struggle as I weigh my need to flout Pistorius’s achievements as a disabled man competing in the regular world, with how I feel about the murder accusation he faces.

I’ve decided to let it rest.  The fact will always remain that Oscar Pistorius was the first double-amputee to win a gold medal in the arena of able-bodied world track.

For me, giving that kind of hope stands on its own.

k-cropped-4x6Kathe Skinner is a Relationship Coach, Certified Relationship Expert and Marriage & Family Therapist in Colorado where    she conducts communication workshops for teens and parents, couples, pre-marrieds, the invisibly disabled, and the over 50 crowd.  Kathe enjoys collaborating with other professionals in order to reach more relationships affected by hidden disability.  She sits on the Executive Board of the Invisible Disabilities Association, is a regular contributor to Disability.gov., and is an ardent-and-natural-teacher-without-a-classroom.  She has been diagnosed with multiple sclerosis for over 30 years.  More about Kathe at www.BeingHeardNow.com or at her blog, ilikebeingsickanddisabled.com.

WE ALL BELIEVE IN LOVE

bride groom

We  believe in love, we just don’t practice it.

Maybe because we think love has no limits, no boundaries, that all is fair.  Love conquers all and love never ends.  Besides time, love is the greatest healer.  And along with diamonds, love is forever.

If that’s true, what about the chart-topping occurrence of divorce?  It’s said that love never fails, but it does.  As for remarriage, those vows would have to be toned down to reflect this second-hand (or third or more) love.   But they’re not.

Love is conditional.   We love for different reasons, with the reasons shifting and shaping over time together and time separately.  In the beginning, each of us has a different definition, based mostly on expectations.  Usually kicking and screaming, the realization hits that being “in love” suggests a togetherness, a “we-ness”; it’s that definition that relationship is about.  It’s a definition that must be known, spoken aloud, and agreed to by both parties and must be flexible enough to join us wherever we are in life.  Most of the couples I see in my office are still clinging to a separate love definition.

In a purely selfish way, my attention comes to focus on invisible disability.  And how that sometimes becomes a deal breaker when it comes to the limits of love.  Besides losing partner-love (or maybe because of it), self-love takes a big hit when the cause of break-up may be disability or chronic illness.  Don’t kid yourself (but you will) into believing that your definition of love is your partner’s definition.  Remember that the definition of love morphs over time; love is defined by each partner because of all the elements that go into who we are at that moment.

I always disclose to my clients the fact of my MS; one time a client told me he couldn’t work with me because I was “broken”.  Taken aback, I recovered enough to ask him to reconsider, to think about it until our next session.  I’d never had a client be so direct and I’ll admit I was hurt to be judged for my disease.  We did work together very successfully and, at his final session, he told me that he had come to realize that because of his severe anxiety, he was “broken”, too.  I’ve never forgotten how moved I was that my invisible disability led to his introspection and greater understanding of himself.  Best of all, he not only didn’t judge me, but he didn’t judge himself.

It’s crucial at the most basic, core level to actively and with intent search out love’s meaning.  Taking for granted that your definitions are the same leads only to stalemate; bullying for agreement leads to worse.  This love is about the “us-ness”  each of you gives over; anticipating that it will not always be as you first described love in those first dewy moments, faces the reality of who we become together.  Or if we do at all.

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CYBER DISABILITY: A DIGITAL IMMIGRANT IN MY OWN HOMETOWN

In a New York Times op ed piece, a psychologist decried (for many reasons not relevant here) a website offering consumers the opportunity to rate their mental healthcare providers.

Either it’s a lousy psychologist afraid of being outed, or one who hasn’t joined the digital age.

Woefully under-prepared for the speed at which cybertechnology change happens, many providers of mental health and the agencies that oversee them are dancing as fast as they can.   It comforts me in some small way that I’m not alone in being overwhelmed, and for the same reason.   While the “digital natives” who have been born implanted with a microchip  “get it”, the “digital immigrants“, like me,  don’t.  When Dr. Ofer Zur, a prolific writer, educator and speaker on multiple topics affecting the mental health professions, joined his daughter in conversation on the challenges natives and immigrants experience when they’re together, the generation gap widened to a chasm.

There is no worse feeling, no more powerless feeling, than trying to be understood by someone who speaks another language, especially when you have something important to say.  It happens within and among  institutions — government, education, healthcare, religion, etc.  This is “he said/she said” on a  scale bigger than the ones they use to weigh trucks.  Essentially  the same thing is happening:  a lot of misunderstanding, not understanding, or poor    understanding, all increaseding in direct proportion to complexity.   For example, a doctor who doesn’t stay current on advances in medicine is at a disadvantage — not just in acquiring patients, but in saving their lives.

So too in relationships.  Each partner attempts to navigate situations in the here-and-now as well as at every life stage and for each of the challenges that comes.  As situations and life stages change, so, too, must the relationship.  If it doesn’t the relationship risks the stagnation brought about by misunderstanding, not understanding, or understanding poorly.  On any given Sunday, partners are negotiating their own stuff as well as the stuff of their relationship — stage-wise and situation-wise.   Life becomes harder when factors are added that’ve been hanging around for lots of Sundays:  differences in age,  life experience, style, abilities, beliefs, perspectives, family of origin experiences, and so on.

Couples who don’t (or won’t) budge from using an individual point of view when attempting to solve a relationship problem, damage both themselves and the relationship.  Of course, that applies only when (as a colleague says)  you give a rat’s ass in the first place.  The point is that the coupleness is a different entity that each partner, even as it contains them both.

For couples to create a space where they can listen and speak creatively requires conscious effort.  Conscious, mindful effort.  Couples need to become vulnerable to the other if the relationship is to survive, or even form in the first place.   It’s very hard to be vulnerable in our world:  there seems to be more at stake.  At least from  50-50 standpoint.

Which leads me right back around to being a digital nincompoop.

My world is changing, has changed, and I’m overwhelmed by it, which isn’t helped by my own version of what a friend experiences as “chemo-brain”.  Invisible disability affects my ability to “immigrate” and that affects my ability to be successful in a world of mail that is hot, software that isn’t very snuggly, and a file cabinet that’s supported by a cloud.

In a cyber-digital world where I too often fail to accomplish what I want to, having relationship success becomes more and more important.   It’s a fall- back after an unsuccessful hunt in the cyber jungle or a  live word that goes beyond “cancel” or “connect”.   It’s worrisome that, as the chip-implanted generation takes over, the importance of feeling connected in relationship may be too much work and less necessary for self-esteem.

mymendingwall's avatarMy Mending Wall

So many times I have written about the wrongs that have been done to me by the hand or words of someone else.  The pain cuts like the bitter cold wind on a blustery day until I feel it piercing through my skin to my very core.  Sometimes I cannot let it go for it swirls around and around in my head until I am fixated.  The obsession eases me into a great depression where I linger for days.  There I stay, wallowing in my self-pity, for the pain weighs me down.

In my sick and twisted mind, by doing this I think I am facing my fears, facing my pain, facing my past.  I am not.  I am simply marinating in shame and hurtfulness that was created by someone else long ago.  The key words to snap me out of this dangerous line of thinking should be “long ago”…

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A worthy site for women and men struggling with the adult effects of childhood abuse.

mymendingwall's avatarMy Mending Wall

As I was growing up in a home where I was physically, emotionally, and sexually abused, where the adults were addicted to substances such as alcohol or drugs, where chaos thrived, I lived in denial.  Even when I knew in my mind and in my heart that something was amiss, but wasn’t sure what;  that my life was unmanageable, but wasn’t sure why;  that one day I would be free but wasn’t sure when, I lived in denial.  Even when I had an unrelenting hope that one day, my life would be different, I wouldn’t ever again have to suffer these atrocities, and the hurt would suddenly disappear when I was gone, I lived in denial.

“Hope is the denial of reality.”

                      ~Margaret Weis

My denial was an unconscious process.   At first, I recognized inappropriate…

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SAVE ME FROM MYSELF!

bigstock-A-man-carrying-a-pretty-blond--27817625 (1)Twenty seven years ago, when David and I first married, among the things I heard him say was that he wanted “an independent woman” as a wife. To someone like me, who has m.s. and who learned in childhood that playing “the victim” was the way to being loved, that description of “independent” was scary. Not because of working, because I always have, but from the standpoint of not being loved.

Over the years, I’ve come to learn that David’s definition of “independent” was far from what I had thought. Assumptions are relationship killers; being a psychotherapist doesn’t always help what’s personal. But worrying about it and trying to deny my disease because of my assumptions about “independence” led me to a surprising conclusion. I am independent when I accept responsibility for my health – maintaining it or mistreating it.

I was really mistreating our marriage by not practicing self-care as I couldn’t possibly be a good partner if I was sick.

I gave David the burden of my progressive disease instead of doing what I could about it myself. That included all of those self-care things I’m lousy at, like not overdoing it, slowing down, and treating myself well, like eating more than 2 cookies and a cup of coffee for breakfast.  And especially treating my psychotherapy clients better than I treat myself.

David gives me unwavering physical and emotional support, even though he’s stopped trying, bless his heart, to save me from myself. I never listened, anyway.

In the process of leaving me to my own devices David’s unwittingly given me the best, and most terrifying gift of all:  the responsibility for being myself. 

This first appeared in Disability.gov’s “Connections”as The Best Gift David Ever Gave Me, which was also published as a blog in 2012. Kathe Skinner is a Relationship Coach with over 17 years experience as a Marriage & Family Therapist.  She lives in Colorado with David and their two hooligan cats, Petey and Lucy.
copyright, 2012 Kathe Skinner

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

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

“If you have multiple sclerosis, you’re treated with respect.”

The following assertion was made by Maxine Cunningham, founder and director of Empowered Walking Enterprise/Ministries.  My response follows.
“Dignity is not a word that we often hear in connection with how we treat persons with a chronic mental illness – YES if you have cancer, ALS, multiple sclerosis, etc. Dignity and full personhood – that we might be whole.”

As a therapist with multiple sclerosis, and a Board member of the Invisible Disabilities Association, I can assure you that those with physical illnesses, esp hidden ones like cancer, ms, lupus, Crohn’s diseaes, fibromyalgia, anxiety, depression, etc., are not always treated with dignity.  There are still people who will not hug someone with cancer for fear of “catching it”.  An ms client was escorted from a grocery store after she fell into a display; the assumption was she was drunk, not that she fell because of balance problems.  Read about my own experiences with people’s assumptions, misperceptions, and misunderstandings on my blog, ilikebeingsickanddisabled.com. and in my article for the government’s site, disability.gov, http://usodep.blogs.govdelivery.com/2012/07/25/looks-can-be-deceiving/.   Mental health issues are as much a part of invisible disability as physical health issues are.  Parsing them dilutes the effectiveness of advocacy.  Without ignoring the special needs of any group under the umbrella of “disabiltiy”, it might, at some point, be worthwhile to give up the “me” in exchange for the “us”.

Kathe Skinner is a Relationship Coach specializing in coaching couples whose relationship is impacted by invisible disability.  She lives in the Front Range of Colorado with her husband of 26 years, David, and their 2 hooligan cats, Petey & Lucy.
© 2012, Kathe Skinner

Don’t park there! You’re not handicapped!

The note felt angry.  Certainly blaming.  Obviously rude.

I understood because I’ve left that kind of note, but only on windshields without placards.

No takers when the manager of the Goodwill store where I was shopping made the following announcement (I had to bully her first):   WILL WHOEVER LEFT A NOTE ON THE CAR OUT FRONT PLEASE COME TO THE FRONT OF THE STORE.

I wanted to have the opportunity to talk with whoever judged me without knowing me.  I have multiple sclerosis, at the point in the disease’s progression where symptoms are more wax than wane.   I would tell them about how invisible, or hidden, disabilities sometimes do necessitate a handicapped placard even though it might not appear so.  I’d give examples, like heart disease, diabetes, neurological diseases, RSD, fibro, cancer, adding that the list is a long one.

I wished they’d been behind me at the Dollar Store when my bladder acted up.   Or in the same store as a client of mine who described stumbling into a  display before  being escorted out  as a drunk.  Maybe they could explain why strangers offer me assistance when I think I’m moving just fine.   What did they see that the Goodwill shopper didn’t?  If I had to guess, it would be because I was observed going into the store, rather than when I was finished; big difference.

Reminded again of the struggle in having an invisible disability, I’m sad that in addition to symptoms that are now here to stay (tremor, swollen extremities, multiple falls, poor bladder control, loss of balance, difficulty swallowing, nerve conduction impairment, word finding difficulty, holes in my memory) I’m still having to explain myself.

The irony isn’t lost on me.  I get it that I overdo when I feel good.  I get it when clients tell me the same thing, even down to wondering if they’ve made up the whole disease-thing after all.   I’m crushed each time what I know to be true really is.

The toll is great, paid in relationships confused and frustrated by the two messages the invisibly disabled throw out:  I’m fine/I’m not;  help me/don’t.

Invisibly disabled by multiple sclerosis for more than half my life, I’m glad there’s people looking out for the fair use of handicapped parking.

Mostly, I’m delighted I looked good enough for someone to regard me as normal.