ROOT FOR SOMEONE FAMOUS TO BECOME DISABLED THIS MONTH

I was just reading the Screen Actors Guild’s 2005 study of how few representations of people with disabilities were scripted into tv shows — less than .5% even had speaking roles.

Five years later, the Gay and Lesbian Alliance Against Defamation (GLAAD) noted essentially the same thing. Using media to capture Americans’ attention (film, video, print, cyber) is well-suited to our short attention span and overall sense of unreality about the really real world, where visible or invisible disability can be turned off, deleted, or disregarded.  Where we communicate about disability on-line rather than in-person.

hear no evil 2 How pitiful is it when we ride on the coattails of someone famous’ disability, metaphorically pointing at our chests, crying “me, too!”?

Visible and invisible disabilities like Nelson Mandela’s cancer, Michael J. Fox’s and Linda Ronstadt’s Parkinson’s, Catherine Zeta Jones’ bipolar disorder, Ann Romney’s M.S., Glenn Campbell’s Alzheimer’s are all well-known and forgiven because they’re beautiful, charming, entertaining, or people dear to us in other ways.  “Oh, how courageous they are,” we say, “and what a shame.”  Even those of us who are disabled ourselves are sad for the afflicted-famous!   Does someone famous earn more points for being disabled?  Is it a bigger deal?  And how come we feel bad for the misfortune of people who usually have the means by which to be disabled more comfortably than we ourselves have?

I’m not looking for pity, just parity.

As in years past, President Obama again established October as National Disability Employment Awareness Month.  The spirit of it is lofty and disability awareness monthtouching.  But business generally runs on what’s concrete, not what’s moral.  Even more to the point, it can be expensive to hire disabled workers: accommodating to special needs isn’t cheap (widening doorways, re-designing rest rooms, installing elevators, etc.) and unless the federal government is handing out money or tax incentives to businesses, hiring the disabled isn’t good business.

Furthermore, if businesses have to be induced by other than moral means to hire this population, it’s like asking a restaurant to serve a customer gratis, just because he’s hungry.

Won’t happen, nor should it.

The fact is that the people who do the hiring are just people, members of a society that has difficulty having the disabled around in the first place.  Employers are no less prejudicial about disability than they are about age, gender, national origin, or sexual preference.

It’s perplexing that the morality play of the President’s proclamation would be presented in an economic climate like that which exists in the world today, where corporations like Siemens lay off 15,000 workers at a swipe.

I suppose none of them were disabled.bigstock-Group-of-tiny-people-walking-i-36380644 (1)

It’s insulting that the plight of the disabled worker should be highlighted when they are only part of the millions of other Americans who are hungry for work, If inclusion is sought, singling out any one portion of the population defeats the stated purpose.

The proclamation belongs in The Truman Show, where it’s always sunny, there are never problems, and life is always fair. Happily deluded.

But hey, thanks for giving the nation a heads-up that employing the disabled is the right thing to do.  I do believe that now, finally, things will change. (wink, wink)

Kathe Skinner is a Colorado-based Marriage & Family Therapist and Relationship Coach specializing in work with couples, especially those whose relationship is affected by invisible disability. She is in private practice where she can arrange her environment to meet her continually changing physical needs.  She has been diagnosed with multiple sclerosis for over 35 years.

THE GRASSHOPPER & THE ANT: A LOVE STORY

 In the modern age, long past the time Aesop and Burl Ives were telling stories, hybrids thrived.

Different is Better

Different is Better

One such unlikely combination was the grasshopper and the ant.

Now, you would think that being such behavioral opposites their paths would never cross.

You’d be wrong.

Somewhere in the reeds and weeds all the bugs were doing their thing.  Beetles rolled balls of doo-doo around in      circles.  Bees started happy hour before five o’clock while cockroaches didn’t look anyone in the eye.

Ants, on the other hand, saw none of this, nor did they care.  Their journey was always the same:  back and forth back and forth from here to there here to there without looking left or right the whole time.

Don’t wait it’ll be too late don’t wait it’ll be too late,” That was the mantra of the ant.

A world away – in bug terms, actually only a few yards – a grasshopper did grasshopper things.  A traditional dance danced to a traditional song.  A game of Reverse Limbo.   Hopping and leaping hopping and leaping getting the rep of not being in one place too long.  A grasshopper’s boots were never parked under anyone’s bed.

La la la la la la live for today.”   That was the grasshopper’s mantra.

Now, I know a lot, I’m very smart and awfully tuned-in, but, to be honest, I don’t know how the two of them – being so different and all – got together.

But they did.

No longer was it this way or that way right or wrong yes or no.  The grasshopper and ant created an us where before there was only a yours or mine.  No longer just different bugs, the grasshopper and ant created  more:

A view looking down plus a view looking around;

Purpose and play all in one day;

In turns open-minded and single-minded;

Rewards from busy and the permission of intimate;

All that, plus leaving room for each to do their own thing.

Here it is, the end of my story.  I thought long and hard about the best way to finish it.

The truth is that the end is the beginning as much as a beginning is an end in itself.  It’s truly true that an ant by itself and a grasshopper alone is never as juicy as the two together.

Two together is the only way to live happily ever after.

The End (The Beginning, as well.)

BEING INTENTIONAL: HOW DID I GET HERE?

erasing brainThe autopilot in us keeps us so far from making choices that our lives go by like getting to work — can’t even remember how we got there.

I tell myself that if life wasn’t so full and whirling I’d be more of a participant instead of bystanding   But getting in “the flow” isn’t singular and it isn’t the same for each of us.  While I suspect that lots of us get caught in a fast flow, I don’t know how many of us feel overwhelmed by it.  Nor do I know how many of us realize how many different “flows” are there for us.

For me, with the cognitive sequelae of multiple sclerosis (and for other people whose chronic illness or hidden disability does the same to them — chemo brain comes to mind) what I remember and what I miss, is the ability to click it out, project after project, day after day, for years.  I stayed on top of things, moved and shook my world.   And I felt I created my world, all I was really doing was joining someone else’s flow.  Nevertheless, by America’s professional and monetary standards I counted myself a success.

Today, I fail to take into account how much life has changed in the years since I moved and shook my world.  Looking back, technology hasn’t been my friend.  Today I’m outsmarted by phones and made (too) aware of bad hair days because of someone’s visual access to me.  Moreover, being lost in the internet is akin to being down the rabbit hole, where time is immaterial or at least irrespective of my reality.

Like a merry-go-round that some bigger kid has pushes faster and faster, I’m dizzy from the motion and tired from hanging on so tight.

Not meaning to be dramatic or negative, let me be both:  if I was somebody else biting into the pickle I’m in, I’d spit it out.

So what does this have to do with being intentional?  Simple.  We don’t have to stuff the whole pickle into our mouths at once.  Nor do we have to eat the whole thing.  Part of the lack of intentionality is being black or white, all or nothing, impulsive.  Choice is instinctively exercised by most (all?) organisms as a way of preservation.  That my cat won’t approach the blow-dryer unless she first makes sure it’s dead and can’t hurt her is demonstration of intentionality.   How odd, then, that multiple times a day the hair dryer beats up the most evolved organism on the planet.

Turning on the computer doesn’t mean I’ll sit in front of it for 12 hours; I make that choice.   Choosing how to live those quickening days needs to be as intentional as that.   Thought-full, not automatic.   Damnable that choosing to get out of the fast flow is so difficult to do.

Ultimately, that final final choice isn’t one we’re allowed to make.

k-cropped-4x6Kathe Skinner is a Relationship Coach, Certified Relationship Specialist whose professional strength is working with couples affected by hidden, or invisible, disability in Colorado where she conducts communication workshops for couples, pre-married’s, 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.Kathe Skinner is a Marriage & Family therapist, and Relationship Coach. Suddenly, she finds herself in the midst of a confluence of “flows”

THE DISABLED EMPEROR’S NEW CLOTHES

Lots of us with disabilities, hidden or not, feel as if we’re a burden.  Needing assistance with basic tasks, like getting from one place to the other, feels like a loss of independence.  Depending on our experience with that quality, a loss like that can be emotionally upsetting.  Thus, we want and need to believe that relationships are unaffected.

In the story of the Emperor’s New Clothes, swindlers were able to part a vain monarch from his money by appealing to his sense of entitlement.  Only the very smart, the very gifted were able to see his new clothes.  There weren’t any new clothes, but no one would say there weren’t for fear they would appear stupid.emperor

Our partners and families are like the Emperor’s subjects.   Secrets emanate from anywhere in the family system, usually set in motion as a way of controlling the environment and the people in it.  Control like that often comes from feeling out of control; in other words, denial of something being wrong sends the message that, like the Emperor without any clothes, the subject is closed.

Imagine if no one had spoken up.  Life would’ve gone along, albeit uncomfortably.  After all, only a blindfold man could be comfortable in the regent’s presence.    The Emperor may have become isolated as others began to avoid him.  But it would only be a matter of time before someone from outside the kingdom was presented at court.

Pretending has its costs.  Not just for the Emperor (who had to have been hugely embarrassed when that little honest kid called him out) but for the townsfolk who went along with the lie.  Pity the poor traveler, too.   There are always good reasons we can cite for living a lie, or for allowing others to live one.  Call an Emperor naked and you spend your time knitting in The Tower.  Or worse.

Feel sorry mostly for the Emperor.  Another word for entitled can be delusional.  When one of us wants to keep secrets about one side of a relationship, no relationship really exists.  Thus, the Emperor was alone although he didn’t even know it.  None of his relationships were truthful even as everyone in the relationship knew the truth.  Living as if is the same as living a lie.

Everyone colluded in living dishonestly.

There’s a problem, of course.  Feelings denied become corrosive; not just to the person swallowing them, but to everyone, especially an intimate partner.  It takes lots and lots of energy to act “as if”; there’s always the chance of a slip-up.  Maintaining a lie means additional lying and the exhausting need to remember the story.

Hard to put yourself in the Emperor’s place.  He could’ve learned his lesson about separateness, about being entitled by disability to keep thoughts and feeling secret.  Being outed may have made him a better man; more honest and willing to take part.  Or it could’ve embittered him further; providing justification for putting lots and lots of people in The Tower.   I choose the ending to this fairy tale.

The Emperor let go of pretense and chose honesty instead.

The Emperor looked for corrosiveness and sought to right it.

Intimacy took the place of separation, and destructive secrecy was banished forever.

Honesty was restored to the Kingdom, and that no punishment befell anyone who spoke up.

Vulnerability was again valued.

And that’s how  everyone lived happily ever after.

k-cropped-4x6Kathe Skinner is a Relationship Coach, Certified Relationship Expert and Marriage & Family Therapist in Colorado where she conducts communication workshops for couples, pre-married’s, 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.

LOVE ME, LOVE MY CHAIR

Rachel1A couple of weeks ago I introduced Rachelle Friedman to those of you who don’t know her.   If you recall, she became wheelchair-bound due to a freak accident at her bachelorette party.  I promised to tell you more…

Not to be cheesy, but Rachelle and her husband, Chris, are nothing short of inspiring.  They never chose to be in the spotlight, but they are.  Their lives together have a level of transparency they’d never planned, where privacy doesn’t look anything like it used to.

The very act of being married is a prime example.

He stayed with her?  Actually married her?  No shit!  Uh, what about sex?  They don’t “do it”, do they?

The answers are all “yes”.

Much is made of Chris’ staying with her.  It’s not just that she had an accident, ended up in a wheelchair, and except for that everything else stayed the same.  Rehab was long and painful.  With paralysis, her body changed and she’s plagued by low blood pressure, which makes activity dicey.  And even though she can’t move her legs, nerve pain still exists — something medication doesn’t completely take away.  So why does Chris stay?  “The extra hardships don’t outweigh his love,” Rachelle will tell you.  It’s not that he “stayed with a girl in a chair that makes him great.  It’s that he’s loving and giving no matter what.”

I hope people are inspired by our love, not because of my disability.   – Rachelle Friedman  rachelle2

Rachelle doesn’t understand the fuss that’s made of her everyday life, either.  “Just because I wake up in the morning, eat breakfast, work out every now and then and play sports with a disability…does not make me inspiring.”

One of the biggest changes has been in Rachelle’s career path, and the corresponding change in life plans because of it.  She can no longer teach aerobics, nor can she be a reliable 9-5 employee.  This young woman likes to inspire and also to educate.  She is registered with a speaker’s bureau and has been doing some cool speaking gigs.  If money was not a roadblock, wants to be a coach, helping other people.  With the loss of that second income, the couple struggles financially.

You could call her the Queen of Lemonade, but I think there’s more to Rachelle than that.  I’m sure there are moments…   But she is blessed with talent, beauty, and drive, so Rachelle would be a winner no matter what.  That she has a wheelchair in the way, well, that’s just a lotta lemons.

Visit Rachelle at www.facebook.com/rachelleandchris and on Twitter at @followrachelle.  Watch for her book next year!

Kathe Skinner is a Relationship Coach, Certified Relationship Expert and Marriage & Family Therapist in Colorado where she conducts communication workshops for couples, pre-married’s, the invisibly disabled, and the over 50 crowd.  Kathe enjoys collaborating with KatheSkinner marriage & family therapistother 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.

5 WAYS TO SOOTHE VERBAL BLUNDERS

Open mouth, insert foot.  It’s the verbal version of walking through the restaurant with toilet paper on your shoe.  We’ve all  experienced the mortification of poor verbal choices.  Sometimes, embarrassing stuff just happens.  Letting those blunders happen  more often than       not, though, is a problem that goes beyond stuff that sometimes happens.  woman holds breath

In fact, as I describe on my website www.BeingHeardNow.,com, verbal pratfalls reflect how good your communication skills are overall.  Luckily, preventing verbal embarrassment is surprisingly easy.

1.  Slow Down:  I’m reminded of reading only the first part of a test question only to have it turn out that the actual question was in the part I didn’t take time to read.  Being impatient diminishes the amount of information you have at hand, which leads to uninformed or ill-informed comments. You haven’t demonstrated complete interest in someone else; you’ve taken over control of their  speech.  You’re seen as self-centered, rude, brainless and uncaring.  Men report that women talk too much, citing that as the reason they don’t listen.  Whatever the cause, look for the speaker to  shut down and become disinterested in you as a conversation partner.

2.  Pay Attention:  It is nothing short of insulting when the listener doesn’t appear to be listening.  The oops can be verbal or non-verbal:  eyes looking elsewhere instead of making contact with the speaker; paying attention to your own task while saying you’re listening; saying something irrelevant to the conversation.  Some of my worst oopses have come from replacing the speaker’s reality with my own. The result is that I’m left behind and the speaker knows it’s because I’ve broken a cardinal rule of good communication: I haven’t paid attention.   I cringe every time I look at a picture taken at a business function where one of the guys I’m talking to is looking around the room, not at me.  When that happens to you pay attention to how you feel; I guarantee you won’t do it to anyone else.

2.  Stop Assuming:  Unless your crystal-ball is in good working order, acknowledge you don’t know everything.   Take in what your environment is really about; those who assume don’t.  The result includes finishing other peoples” sentences, interrupting with comments that go in the wrong direction, misinterpreting what’s really being said.  Women pull out their crystal balls when they complain that their partners don’t talk to them, or even listen in the first place.  The assumption is that a partner’s thoughts, and especially feelings, are being purposely withheld.  The result can lead to a rift that is about far more than what the topic of conversation was.  Want a clue?   Look for a surprised or confused look from the speaker.

3.  When in Doubt:  People are generally uncomfortable with dead air.  If you doubt that’s true, pay attention to your comfort level when the radio or t.v. looses sound.  In fact, there is no rule that says that the air must be filled with someone always saying something.  For some of us, the tendency to chatter takes hold, resulting in poor or unconsidered statements.    When in doubt, zip it.

4.  Apologize Sincerely:  There are times when everything you’ve done has turned out wrong.  Your enthusiasm leads to interruptions, perhaps because of identifying so much with the speaker’s topic  you take over.  Other times your disinterest may show.  Or you may fail to edit yourself: what comes up, comes out.   There are so many examples, I’m sure everyone can think of a cringe-worthy moment.  Whether or not you’re responsible, tune immediately into the speaker.  Be truly sincere when you say how sorry you are you’ve caused confusion or distress.   People generally react warmly to someone who really cares how they feel.  Don’t make it long and drawn out and be light-hearted if you can.  Whatever you do, don’t put blame out there somewhere.  Accept responsibility and be sincere about it.

5.  Know Yourself:  I’m an inveterate talker because I’m so curious.  I know, too, that when I get nervous I talk too much.  Two thousand feet down in the Molly Kathleen gold mine, you couldn’t shut me up; the tour guide finally stopped acknowledging me at all and my husband pretended like he didn’t know me. When I tuned in to their non-verbal responses to me, I knew to be quiet.

Truth is that sometimes goofs happen.  Part of what makes us endearing is having flaws and being vulnerable because of them.  Pay attention to basic communication skills; you’ll benefit from not crossing the line into mean, and your oopses will be quickly forgiven.

Kathe Skinner is a Colorado Springs Relationship Coach with a sub-specialty working with couples whose relationship has been impacted by invisible disability.  She herself has MS.  Kathe and her husband, David, teach Couples Communication Classes along the Front Range of Colorado.   Personal experience makes them believers that good communication skills are necessary for a successful relationship.