YOUR SEXUAL FANTASY INCLUDE THE PERSON ON THE NEXT PILLOW?

Rachel Friedman, sometimes called the

Rachel Friedman, sometimes called the “Paralyzed Bride” became a quadriplegic after a freak accident at her bachelorette party. She recently did a sexy photo shoot to make the point that the disabled are still desirable and sexual.

We’re into fantasy when it comes to sex.  For most of us, we found head candy in a hidden magazine stash or a suggestive romance novel.  Within adults’ lifetimes, though, there’s been an explosion in readily available sexual images.

No wonder couples get into relationship trouble when the expectations built around sexual fantasy get confused with who’s really on the next pillow.

Despite the (sometimes problematic) changes in what’s okay to portray, have we changed enough that sexual images that include disabilities’ realities — like ostomy bags — are fantasy-worthy?

Or is it just gross, which was one person’s reaction to Rachel Friedman‘s photo shoot.

Lots of us believe that people with physical disability are asexual, maybe because the thought of them having sex is a turn off.  After all, sexual fantasy is about perfect bodies doing perfectly acceptable things perfectly. Reality’s a bummer.  It’s a drudge; it’s hard; it’s not glamorous; it’s too often too tired and too often grumpy.  It farts, too.

Reality’s what’s unpleasant to look at; graphic disability’s just part of it.

Kathe Skinner is a Marriage & Family Therapist specializing in couples work, especially with couples whose relationship is impacted by chronic illness/disability.  She has been diagnosed with multiple sclerosis for almost 40 years and lives in Colorado Springs with her husband, David, and their hooligan cats.  Find out more about her at www.coupleswhotalk.com or at their Couple Communication Workshop site beingheardnow.com.  

© 2015 Being Heard, LLC

WHY DISABILITY INCLUSION WON’T WORK

ID-100144311This post was first published the first week of August, 2014 by the federal government’s blog Disability.gov.  To date it has had over 1,500 hits.

As a Marriage & Family Therapist with multiple sclerosis, I write for Disability.gov, my own blog, and others like it, getting the opportunity to be a source of strength for people and their families. That’s why I was surprised when one organization denied my professional presence because I didn’t have that specific chronic illness/disability.

Though illness-specific groups may be essential to living well, the “micro” view of disability dilutes what’s important for the non-disabled world to know.  Advocating for one chronicity over another may be a reason society doesn’t see an inclusive, “macro” view of disability/chronic illness.

For inclusion to be successful the commonality between disorders needs emphasis, not the differences between them.

Too many chefs in the kitchen.  The more “chefs” that compete for “counter space”, the smaller the counter space per chef becomes.  Just ask me and David when we’re in the kitchen together.

People’s attention span is similarly filled up.  With only 8 seconds before the brain moves on, it’s imperative that disability advocates grab attention quickly.  It’s not about the cause; it’s about whether the cause catches the eye.  Think pink.  If you associated it with breast cancer awareness, you just illustrated my point.

And when many organizations compete for the same amount of space, there’s always an organization that doesn’t make the cut. It takes lots of money to develop brand-awareness, keeping any disability in the public eye, which is where lots of fund-raised dollars go. For example, the success of breast cancer’s “pink ribbon” campaign reduces visibility of all other cancers. The “pinks” don’t even share the spotlight.

Interestingly, there’s been a pinkish backlash that the campaign is about advertisers rather than the illness itself. Some corporations may spend much more on advertising and product-development than they do supporting patients through corporate giving.

Holding a sign.   Over millennia, physical characteristics have defined which partner we pick in order to further the species.  Even today, positive physical attributes often define who we choose in a variety of situations.

Studies in social and behavioral sciences repeatedly demonstrate this phenomenon.  Ask yourself who is generally more desirable – even approachable – a pretty, smiling woman or the same woman who’s using an assistive device?

While physical traits may vary across culture and time, physical disability seems always to be a disqualification.

Different is bad.   When Mom and I went mushroom hunting, she knew what was safe to pick. Even so, except for the two of us, no one in our mushroom-loving family ate Mom’s soup. .

Most of us seek sameness:  what we already know represents safety in a dangerous world.  Like knowing which mushrooms to eat, being able to quickly pick out who is different is a survival technique that can increase our chances of being on the winning (not dead) side.  While jumping to conclusions poisons thinking, when it comes to survival, what is thought to be safe is better than being sorry.

People with visible disabilities and chronic illnesses pay a stiff toll, daily. Even de jure protections like the Americans with Disabilities Act (ADA) don’t quickly change society’s de facto attitudes or treatment. Consequently, significant portions of the population entitled to the protections of the ADA remain invisible, choosing to avoid what happens too often to the disabled in work, housing, and relationship.

The in-crowd. My mother tried to get me to act in rational rather than group-think ways by employing inter-species logic that often involved lemmings.  Like lemmings, we like to affiliate.  Higher-order species have a “mine is better than yours” mentality; no one likes to be chosen last for kickball. Put another way, a person needs to feel superior to someone else. For example, I’m sometimes told, “At least I don’t have multiple sclerosis.”

Rather than forming a coalition that has strength in numbers, disability associations are often narrowly-defined and exclusive, repelling people who don’t fit the bill (think pink). Sameness attracts the same, so when selectivity combines with disability the result may be a man who judges other disabilities as not being as prestigious or disabling as his own. Or that another chronicity is less normal than his own.

Show me the money.  Fundraising 101 teaches that attracting glamour to a cause is a win-win:  Celebs earn brownie points for social responsibility and organizations gain public awareness which they hope translates into dollars.

How successful a cause is at the funding game is based on two realities from the world of social psychology:  The group with well-produced and well-managed public relations and advertising is judged to be trustworthy and knowledgeable; and, the more followers an organization has, the more adherents it draws. The Labor Day telethon is illustrative:  highly regarded spokespeople increase giving; and the more people give, the more others are likely to give, too.

There are reasons all people don’t unite under the disabled/chronically ill banner.  If no one otherwise knew you were disabled, would you want them to know?  Do you have trouble identifying with some types of disability?  Want to escape the judgment, treatment, discrimination, politics, classism, fractionalization, in-fighting, and politics of disability inclusion?  Or do you simply have other things (like eating) on your plate?

The discomfort with, fear of, and misunderstanding of the disabled population still exists, even among the disability community itself.  Housing disproportionate numbers of the disabled, asylums existed as recently as fifty years ago. One-fourth of the nation’s disabled live below the poverty level while the federal government codifies what ought to be a moral imperative in the first place.

Disability is an 8-second sound-bite: Limbless vets, autistic kids, select high achievers. Inclusion? The disability community itself is exclusionary; perhaps we need to look for answers there, first.

Kathe Skinner has been diagnosed with multiple sclerosis for over 35 years and knows first-hand what discrimination and judgment feel like in work and relationship and is now working to adapt to a changed reality as her disease progresses.  Thankful for stability in two areas of her life, she has been married for almost 30 years and is a Marriage & Family Therapist in private practice in Colorado where she lives with husband, David, and their 2 hooligan cats.  Read more about Kathe at www.beingheardnow.com.

Kathe welcomes your comments and can be reached at 719.598.6232.

Illustration Courtesy of Stuart Miles

©2014 Being Heard, LLC

WHAT YOU NEED TO KNOW ABOUT BEING HAPPY

Funny couple

 

If you’re allergic to dogs, happiness is not a warm puppy.

Metaphors about puppies, or anything else, are potentially dangerous.  Even knowing where happiness — like any other emotion — occurs on the emotional spectrum doesn’t give the whole story. The only way to really know about someone else’s happiness is for you to ask and them to tell.

Thinking in deep and different ways about happiness isn’t easy.  Here are some thoughts to get you started:

 

–  Happiness has to withstand time, age like fine whiskey. Update your awareness: what made us happy then may not make us happy anymore.

–  Time and distance are sweeteners; I always love those I love when I’m away from them.  Be aware that both time and distance can be distorting while still sweet.

–  Remembering happiness transports us to a happier time; look at the popularity of oldies music, or school reunions.

–  Happiness can be a trickster.  Absence does indeed make the heart grow fonder, usually brought to you by distorted reality.  We want happiness so much that remembering it can be larger than life.

–  The “gift giver” doesn’t have to be animate and neither does the gift, like what what we derive from picturing daybreak in our mind’s eye, or watching sunrise in the moment.

–  Giving happiness to someone else requires mindfulness and presence.   For example, active listening to what your child, friend, partner says, and being heard yourself are monumental gifts.

–  Happiness shows externally (an ear-to-ear smile) while its meaning remains internal.

–  Your happiness is unique to you; no one else has ever been happy in that precise way.

–  It’s personal; no one can tell you what makes you happy.  Letting someone decide for you can turn happiness into unhappiness and resentment.

–  It’s a singular moment in time, that’s the reason it stands out.

–  Happiness can be bittersweet; like remembering past happiness that is no longer ours.  The coin of happiness has another side; in some situations, there is no happy at all.

–  Happiness can’t exist in a vacuum; and it can’t start there, either.

–  Happiness is an active process; changing as we change, growing as we grow.

–  Happiness is dynamic: the act of giving brings as much happiness as receiving.  Happiness is an endless loop, where giving begets happiness that begets the receiver’s happiness that can lead to the receiver becoming the giver where each one is giving and receiving and so on and happily ever after.

Mostly, you need to know that your happy can never truly be anyone else’s.  Sharing words and thoughts and then listening and hearing each other, that’s the only way any of us ever really know what makes someone else happy.

Kathe Skinner is a Colorado-based Marriage & Family Therapist specializing in couples work, especially those for whom invisible disabiliy is a player in their relationship.  Lack of happiness and poor communication are the two biggest complaints that have couples seeking her help.  She knows all too well that there are times happiness seems to be hiding under a rock.  What brings her happiness?  Her husband David, their 2 kitties, Petey and Lucy, the people who trust her as their therapist, and lying on a pool float looking up at a clear blue sky.

Read more about her at www.beingheardnow.com

Kathe welcomes your comments and can be reached at 719.598.6232.

©2014, Being Heard LLC

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WHEN A CAREGIVER DIES

bigstock_Old_Couple_Holding_Hands_2041049     First published on Disability.gov

For 70 years she put up with his (sometimes volcanic) rumblings.  He doted on her with diamonds, and was a poorer father for it.

The youngest of 5 much older siblings, she was babied into being passive and timid.  He was a blustering bad boy who loved control; a lifelong natural at most things mechanical.  He took seriously his duties as a man, a spouse, and head of the household.  He didn’t brook anything that deviated from his definitions of right and wrong, a bigot in many ways.   A mother and military wife who could fend for herself and children when she needed to, she preferred being cared for . . .  and he liked it that way.

Both were fortunate:  for much of their lifetimes, neither was chronically ill or disabled.  Unless you count legal blindness, which he didn’t (though most who drove with him did).  And even though she developed macular degeneration, a disease of the eye that usually leads to blindness, she could sometimes see the world better than he did.

Several years ago her macular degeneration began to impact both of them.  By then, her hearing had deteriorated, too, and her world shrank.  Although she rarely admitted fears (not to us, anyway) he expressed his the only way he knew how:  he fixed as much as he could.  He cut her food, gently guided her through the dimly-lit places they avoided more and more, lent her his arm, and searched out gizmos and gadgets he found in catalogues.  He took care of her.

Last year, George left Kate.

True to his role, George had organized everything, including who his wife’s legal caregiver was to be — my husband. Now, almost a year later, Kate no longer plans on joining George in death right away and doesn’t cry for hours each night.  Not that she tells us, anyway.  As her vision deteriorates Kate, not surprisingly, adapts. David and his sisters do what they can from a distance of a thousand miles, mostly via phone calls and the occasional visit.  Immediate support comes from close friends and a kind and caring nursing home staff.

Today, it takes a dozen people to do what George did.  Even so, he can never be replaced.

None of us could live well if we spent too much time dwelling on the eventuality of death.  But some of us — the visibly or invisibly disabled or chronically ill — need to spend more time thinking about the profound changes a caregiver’s death brings.  Like David’s parents, my husband and I are fused by years, experiences, commitment and love.  Though I’m the one diagnosed with multiple sclerosis, in truth MS is something we both carry.

As we age and tire, slow and re-prioritize, both of us have to remember that though we plan to go out holding hands as star-crossed lovers, the truth is more mundane . . . and likely.  Whoever is left to mourn, cared-for or caregiver, what needs to happen is the same:

1.  Plan now.  The outcomes might look different, but the grief will be the same.

2.  Get your house in order.   You don’t have to be a survivalist in order to be prepared with legal, medical, financial, and personal concerns.

3.  Create your own family.  Gather together people who care, no matter what the will says.

4.  Get outside each other.  Get perspective from someone trustworthy and caring who’s outside the mix — minister, counselor, or therapist.

5.  Express yourself and your needs clearly, often, and appropriately.  Consider what to say and who you say it to.  Sometimes being blunt can be hurtful; at other times necessary.  Some people are better prepared to bring a casserole or help with housekeeping than to see you cry.  Try out your voice to a journal, or pay a therapist or counselor . . . they can be skilled and trustworthy allies.

6.  Keep in touch with others.  It’s unfair (and shortsighted) to place the burden only in one place — like with your son.

7.  Have someone to talk to, starting now.  Clergy, therapist, physician, friend, partner, family can help you sort out what to say and how to say it.  Think of yourself as a nuclear reactor.  Keeping it to you guarantees one of two outcomes:  shutting down or exploding.

8.  Join a group of those experiencing what you are.  There’s no substitute for having someone “get it”.  Don’t believe me?  Try talking to someone who doesn’t.

DSC_4482-K&DKathe Skinner is a Marriage & Family Therapist and Certified Relationship Specialist     specializing working with couples, especially those for whom invisible disability is part of the mix.  She has been diagnosed with multiple sclerosis for over 35 years.  Kathe and her husband David hold Communication Workshops in Colorado Springs and are both Certified Instructors for Interpersonal Communication Systems.  Along with their two hooligan cats, Petey and Lucy, they live along Colorado’s Front Range.  Find out more about Kathe and David at http://www.beingheardnow.com and read Kathe’s blogs, ilikebeingsickanddisabled.com and couplesbeingheardnow.com.

© 2014, BeingHeard LLC

INVISIBLE DISABILITY GOT YOU SIDELINED THIS WINTER?

Even if I walked away, I wouldn't be able to walk very far.

Even if I walked away, I wouldn’t be able to walk very far.

For those of us who are disabled, invisibly so, preparing for  weather that turns wintry follows a simple self-care rule:  stay inside.

As multiple sclerosis has progressed in me, simple tasks loom large.

Accumulation of simple tasks makes negotiating my environment literally hazardous to my health.

And I’m not alone in what can happen:

Impaired mobility.   “Give me something to hold onto, like a railing, or a walker,” I said confidently, “and I’m good to go.”  This from a woman who managed the unbelievable – falling down and taking the shopping cart with her.  Not just with her, on top of her.  The same woman who stepped off a sidewalk and fell face-first on her rollator into Chicago traffic.

Adding ice, snow or both increases  the danger, whether I want it to or not.  Cold temperatures stiffen already-Frankenstein-like limbs, reduce feeling, and can even shut down body functions altogether.  For me, any extreme of temperature, hot or cold, and I look and act like a zombie.

Impaired senses and abilities. When it’s cold, the body’s heat is centralized to protect the core.  Extremities function poorly, if at all.  Try counting change at the grocery store, or picking up something you dropped.  Even bending over is dicey and can result in a tumble.  Even worse?  Getting up again.

People with breathing difficulties may struggle, even with little or no exertion.  Arthritis sufferers are crippled all the more.  And the head-injured’s thought processes slow. way. down.

Anything already stressed responds negatively to even more stress.  Think of the knees of someone overweight:  when chubby becomes obese, knees already weakened break down when more weight is added.

Of course not everyone will have such a dramatic response to arctic-like conditions, but some will.   For me, balance and strength, ability to write, well-being and fatigue, mood, motor skills, bladder control, cognitive functions, like word finding, are some of what fall to unacceptable levels.

It’s just plain dangerous.   A wheelchair-bound client of mine was hit by a bus when the driver’s vision was impaired by a snowstorm – he didn’t see her crossing in front of the vehicle.  My massage therapist suffered brain damage when she hit the pavement after slipping on ice in the parking lot.

Our focus on independence may cost us, like the guy who refuses to leave when the flood waters rise.  Thinking about who picks up the pieces doesn’t cross our minds.

Can you afford to get stranded for hours?

Can your heart or lungs hold up to strenuous efforts to free your car from a snow bank?  What happens when your body’s attempts at staying warm mess with your blood sugar?  Or the stress of the whole ordeal brings on pain and diarrhea?

I have a highly polished ability to ignore what I don’t like.  I especially don’t like staying home on those arctic days when others are doing ordinary things, like going to work.  This is true even though experience tells me how I’ll hurt my body, mind, and self-esteem by ignoring how the m.s. in me behaves in harsh conditions.

Instead, control what you can.  Don’t know about you, but I already know what happens when I ignore what that is.

Kathe Skinner is a Marriage & Family Therapist and Relationship Coach working especially with the invisibly disabled.  She looks for real-life adventures in Front Range Colorado where the environment’s sometimes restricted by weather extremes. Currently, she’s cleaning up her home office while groovin’ to the oldies. A pirate’s treasure is stacked on the floor; who knows what she’ll find in all that paperwork?  Learn more about Kathe Skinner and the Couples Communication Workshops taught by Kathe & David at http://www.BeingHeardNow.com

©2014, Being Heard, LLC

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THAT GIRL KEEPS FALLING ON HER BUTT

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