View From My Wheelchair: Weighing Your Words

 

Prov-16-24-WEB

 

Seeing an aquaintance, I smile.  We have both been busy and have not had the opportunity to hug.  I am glad to see her.  She looks great.

“I like your haircut,” I say.  “It looks cute on you.”

“You need to stop losing weight,” she replies and touches my cheek.  “You don’t want to lose too much weight.  Your face will get too thin.”

“Is that a compliment?  Because I feel great.”

“Well, just stop losing weight because you don’t want to lose more.”

For most of my life, I was thin.  In fact, when I was 16 years old, I went on a weight-gaining regime.  With the research available at the time, I tried a 3,000 calorie/day diet.  It was crazy – peanut butter sandwiches and strawberry sundaes prevailed.  The result: a rash from too many strawberries and no significant weight gain.

After the failed experiment in trying to gain weight, I resigned myself to being angular, lanky, and thin.  As I matured, my metabolism slowed down, and I filled out.  Eventually, in my middle years, my weight was within a healthy range.

Muscular dystrophy changed everything, and the pendulum swung in the opposite direction. Even with a 1,300 calorie/day diet and regular exercise, I gained more than 20 pounds in two years.  I knew that my disease was making mush out of my muscles.  So, I resigned myself to the weight gain while I still adhered to counting calories.

Noticing the toll on my energy and mobility with each pound gained, I struggled to lift myself and walk short distances.  A new cycle was formed: less mobility – weight gain – fewer calories burned – weight gain – less energy – weight gain.

Then, one day, I decided to seek the advice of my friend, Beth, who adheres to an anti-inflammatory, gluten-free diet.  My motivation had nothing to do with weight.  Even though I was already adhering to a healthier food approach, I was interested in the gluten-free aspects of her lifestyle.  Armed with experience and knowledge, she filled me with delicious bites of information.  Venturing into the world of glycemic indices, food additives, and alternatives to refined sugar, I discovered new food combinations that are beneficial and nutritional.  I am glad that I decided to ask her for help.  My friend has been instrumental in guiding me on my personal journey to a new lifestyle and has been my recipe guru.

Quite the opposite of my failed experiments with calorie counting, the switch in my approach to my food intake has had positive results.  I feel better.  Just recently, I painted for two hours.  May not sound like much to you, but I was down to painting for 30 minutes at a time.  Even though my energy is still low, I do not feel fatigued all day long.

Another gain from the change in my diet is that I have lost 23 pounds in seven months.  Along with the nutritional benefits to my body, I am convinced that my weight loss is contributing to my increased energy levels.

I am happy.  More energy, less weight to lift, and feeling productive have all given me a boost.  The quality of my life has improved.


The encounter, I described at the beginning, with my acquaintance is not an isolated event.  Startingly, people feel free to make negative comments on my weight loss.  What gives?  According to my doctor, I am within the ideal weight range for my age, height, and gender.  Nevertheless, rather than complimenting me on losing weight, some people feel the compulsion to complain about it.  Funny, they don’t tell me I have lost too much weight; they tell me I might lose too much.  How do they know?  Do they realize that what they say hurts me?

As a disAbled person, I am forced to live in a world of neurotypical patterns and ableist attitudes.  Every day is a struggle.  Speaking for everyone who is facing tribulations: We are wounded warriors.  Please restrain from offering unsolicited advice on what we need to do or do not need to do.  The old adage: if you can’t say something nice, don’t say anything at all should be your mantra when engaging with a disAbled person.  Positive words are welcome.  Negative words are damaging.  Be an encourager.

Kind words are like honey–sweet to the soul and healthy for the body.
Proverbs 16:24

#ChronicBlogs
#disability

 

View From My Wheelchair: Accessible Air Travel

If you have the ability to move, even if it is from a wheelchair to an airline seat, you may not have realized that airline travel is not an option for those individuals whose cannot make the transition.

Recently, the Muscular Dystrophy Association has been working on making changes to travel accommodation for individuals with disAbilities.  In two recent posts, they have articulated changes that would improve life for the mobility-challenged and the current challenges.  In addition, you will find useful links.

 

Accessible Air Travel Crop

“Accessible Air Travel Resource Center

Access to air travel is an important element in living life without limits. The ability to travel by air impacts many aspects of life including options for employment, education, and whether you can get back and forth from a clinical trial or a specialist’s office that is far from home.

October 2016 is an important milestone in accessible air travel as it marks the 30th Anniversary of the Air Carrier Access Act (ACAA), which requires equal access to air travelers with disabilities.  The law explicitly prohibits discrimination against travelers with disabilities, and applies to both domestic and foreign air carriers who operate in the U.S.  A few years after the law was enacted, the Department of Transportation (DOT) issued rules and regulations governing the application of the ACAA.  These rules define the rights of passengers and the requirements of the airlines under the law (Title 14 CFR Part 382).  You can read the full text of the rules here, or a summary of the rules here.

As the 30th Anniversary of the ACAA approaches, we celebrate the great strides that have been made in making air travel accessible, but are also reminded of the opportunities that remain to improve the experience for air travelers with disabilities. MDA is working with policy makers, industry, stakeholders and disabled travel advocates to support initiatives and activities to increase accessibility in air travel.”

and

“Accessible Air Travel: An Important Element of Living Life Without Limits

by  | April 4, 2016

wing-221526_960_720In addition to MDA’s dedication to funding research and providing multidisciplinary clinical care, we are also passionate and committed advocates for the families we serve. Together, we advocate for increased federal funding for biomedical research; for access to clinical care, support services and equipment; and for policies and programs that help ensure access to the resources and services necessary to maximize independence and pursue a life without limits—which includes accessible air travel.  The ability to access air travel impacts many aspects of life—from the kind of job you can have, to where you can live, to whether you can access a provider or participate in a clinical trial that is far away from home.

As the 30th Anniversary of the Air Carrier Access Act (ACAA) approaches, MDA celebrates the great strides that have been made to increase air travel accessibility. In the three decades since Congress passed this landmark legislation that requires equal access to air travelers with disabilities, the law has permitted thousands of MDA families to travel more freely – something that would not have been possible before the ACAA.  MDA also appreciates the efforts that air carriers have made to help disabled passengers access air travel.

In light of the many positive changes that have taken place, however, disabled passengers continue to face significant challenges—and we recognize that there is still work to be done. MDA is working with policy makers, industry, and other stakeholders and disabled travel advocates to support increased accessibility to air travel. A few of the ways that MDA is engaged include sharing information about resources available to disabled air travelers on our Accessible Air Travel webpage, partnering with airlines to provide feedback regarding the information they provide to disabled passengers, and participating in the Transportation Security Administration’s (TSA) Disability Coalition.

MDA is also actively engaged in supporting legislation that would:

  • Study the use of in-cabin wheelchair restraint systems;
  • Identify best practices in airport accessibility;
  • Examine training policies regarding assistance for disabled air travelers; and
  • Create an advisory committee with diverse stakeholders to investigate and report to Congress on the needs of disabled passengers.

MDA particularly supports the concept of a study to examine ways that wheelchairs could be accommodated in-flight through the use of cabin wheelchair restraint systems. The potential for disabled passengers to remain in their wheelchair in-flight is important as travelers must currently transfer multiple times—even when taking a direct flight. In fact, up to five transfers per flight segment are required for many passengers—from wheelchair to aisle chair, from aisle chair to airplane seat, from airplane seat back to aisle chair, and from aisle chair back to wheelchair. Such transfers are especially challenging—or even impossible—for those living with muscle debilitating diseases, and each transfer comes with the risk of injury. The potential for a disabled traveler to remain in his or her wheelchair in-flight is imperative to study as such an approach could not only potentially enable safer travel, it could also significantly decrease damage that occurs to wheelchairs when they are placed in luggage/stowage areas for transport.

As these and other efforts regarding accessible air travel evolve, we will keep you up to date. To receive information related to accessible air travel and other policy and advocacy initiatives, register to receive MDA’s Advocacy updates here.”

Which Came First? Expectations or Beliefs

Seed of Change Cropped
“Seed of Change” oil painting by Rose Wolfe

Several years ago, I came to the stunning realization that I was wasting my life.  My pre-judgments were determining my perception of events.  I should have figured this out long ago, but I was too busy reacting.

You’ve done it, too.  Someone looks at you.  You interpret the look, and, boom, off you go with your emotions riding high.

We have a predilection to interpret events based on our assumptions.  In fact, we will often lie to ourselves.  “I am right.”  We tell ourselves. No reason to test the veracity of what we think.  Humbleness is a lost art – if it ever was an art.

I wonder, do we have the capacity to be less reactionary?  Why do we jump from perception to conclusion?  What dusty rooms in our collective minds need cleaning out and rearranging?

Every time we agree or disagree with someone, we are reinforcing a belief – the unspoken adherence to a system of truths.  Most often, we do not bother to test out our theories before we adopt them as truth.  It is this factor alone that bothers me the most.  I know I am guilty as charged.  Yes, I have a trailer truck of conviction debris that I am pulling along behind me.

Acknowledgment is good, but how do we unshackle ourselves from our burden of labeling others (and ourselves, also)?

Let’s start at the beginning.  How would we describe our childhood, our adulthood?  What did we expect to happen along the way?  What do we believe to be the reasons behind the events of our story?  Come on, we all have a story.  We have written it and are now living it.  It is our reality.

The next part gets tricky.  Our reality feels very real to us, but it is not reality.  Huh?

I don’t know which came first, expectations or beliefs.  What I do know is that they are circular.  Our expectations and beliefs drive each other.  The end result is our reality.  Nevertheless, we can change it.  How?  By changing them.  Challenge our expectations, beliefs, and interpretations.  It may feel as if our landscape is quicksand, but we are not stuck.  The way out is through the pathway of self-examination.

The journey to a new reality begins with a reinterpretation of our story and, by default, a redefinition of our personal reality.  Start telling yourself new stories.  Not only who and what you are, but tell yourself new stories about the guy you pass every day.  You know, the guy begging for money.

How would you describe him?  Have you written him off as an alcoholic, a druggie, a bum?  What if you are right?  Does it matter?  Does it relieve you of compassion?

One time, I was sitting in my wheelchair waiting for my husband to pick me up after a doctor’s appointment.  It was a beautiful summer day, and I rolled over to a nearby park.  Across the street was an elitist residence tower for the rich and wannabe famous.  My book was tucked behind me in a bag just out of reach.  As the noble walked by, staring straight ahead, I attempted to get their attention.

“Excuse me.”

“Wait, I don’t want any money.  I just need . . .”

“Please, could you . . .”

Over and over again, I tried.  Not one person even turned their head.

Finally, a little woman pushing a shopping cart piled high with plastic bags, shuffled over.  “Do you need help?” she asked.

“Yes, would you reach into my bag and get my book out?”

She reached in, handed me my book, and smiled at me.

I smiled back.

 

 

The Social Construct of dis.a.bil.i.ty

Disability.  Dis-ability.  disAbility.  Dis.a.bil.i.ty.

Reclining Man
Charcoal sketch by Rose Wolfe

 
I have a label.  It is dis.a.bil.i.ty: an impairment of function.  You might think that it doesn’t matter.  After all, there is nothing tragic about wheeling around in a wheelchair.  You’re right.  Until I try to become part of the world around me.

Making the decision to participate in the public arena takes courage.  Frequently, people react to my presence with patronization, irritation, intrusive gazes or disregard.  In effect, I am marginalized.  Garnering the strength to face the pity, hostility, and condescension requires planning and determination on my part.  The effort is physically and emotionally
draining.  Sometimes, I do not have the fortitude to face another day wherein not only am I struggling with my impairment, but I am also wrestling with a myriad of social barriers. Even with ADA requirements, society functions with the assumption that everyone is healthy and non-disabled.  Although, the most egregious barriers are the unacknowledged prejudices that are prevalent in society.

Recently, I went out to lunch with a friend.  The bathroom (which had the compliant ADA handicap symbol) was not large enough to accommodate my wheelchair.  I had to use the facility with the door to the stall left open.  This humiliation is not an uncommon experience.  Many times, public facilities lay claim to being compliant, but in reality they are not.  Checkout counters are blocked by display cases, napkin holders are out of reach, doors are without an activation control button, and stairs are without ramps.  Physical barriers prick my energy, but the subtle hostility of people lance me and drain me of all tolerance.  I am constantly confronted with the stranger who is prejudiced against anyone who needs special treatment.  There is an unspoken expectation that my needs should not be greater than theirs.  They are jealous that I get a special parking spot, that I need chairs moved out of my way, or any number of other disruptions to society’s organization of how things should work.  I am stigmatized.

These struggles are not mine alone to bear.  They are borne by all who have a dis.a.bil.i.ty.   Bearing this socially construed label brings harm to the psycho-emotional well-being of all of us who have been, are, and will continue to be stigmatized.  We are battered by the demand to be un-disabled.  However, the struggle against an affliction (which limits our ability to function) is light in comparison with the feelings of being worthless, a failure, burdensome, and crazy.  If we are not careful, we will be brainwashed and internalize the oppression that we face every day.

How often do we try to pass as being able?  How often do we excuse rude behavior?  Are we allowing our self-esteem to be damaged?  We know that our caretakers get drained and that the public does not understand our daily battles.  Therefore, we feel pressured to accommodate the abled individual.  The result?  A loss of our value.  The hidden emotional toll of anxiety and loss of community burrows into our heart.  Another energy drain.

Rather than being disabled, we need to disabuse the public of their labeling system.  As another blogger (Tony Single) stated, “Labels are not for people. ..We’ve lost touch with our hearts.  Our identities are rubber stamped.  Society dictates our self worth.”  (unbolt.wordpress.com.)

Not only do we need to change society’s understanding of who we are, we need to stop our own madness.  We are not our disease.  All of us are functionally limited.  Working together, we can empower the individual to become part of the whole.  For we are a socially-conscious unit, and what we do to each individual has an effect on the whole.  There is a Bible passage that states this concept eloquently:

The eye cannot say to the hand, “I do not need you.” Nor can the head say to the feet, “I do not need you.” On the contrary, the parts of the body that seem to be weaker are indispensable, and the parts we consider less honorable, we treat with greater honor. And our unpresentable parts are treated with special modesty, whereas our presentable parts have no such need.

But God has composed the body and has given greater honor to the parts that lacked it, so that there should be no division in the body, but that its members should have mutual concern for one another. If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it.” (I Cor. 12:21-26.)

The Truth is relevant.

 

 

Suffering Changes Our Reality

Chalk Heart

You can’t choose what happens to you,
but you can choose how you respond.

Recently, Faith McCord observed that “(W)e choose happiness – a quieter, deeper, different kind – despite and because of poor health.”

Having lived with myotonic dystrophy for years, I can attest to the veracity of her statement.  Chronic illness demands an awareness not only of our bodies but our disposition, as well.  Suffering puts everything in perspective.

Suffering Changes Our Reality:  So much of what we think or feel is metamorphosed not only by what happens to us but by how we interpret those events.  Have you ever experienced something so intense that you felt as if you were observing life rather than living it?  Our senses become heightened.  There is a similar experience for those who suffer.  Over time, we become more real.

A good example of this is in the children’s book The Velveteen Rabbit:

“Real isn’t how you are made,” said the Skin Horse.  “It’s a thing that happens to you.”
“Does it hurt?” asked the Rabbit.
“Sometimes,” said the Skin Horse.”It doesn’t happen all at once. . .It takes a long time.”

Facing chronic illness drains the superfluous sentiments from our lives.  Over time, we start to care about what matters.  Reality is redefined.  There is a realness that we did not feel before.  Acquiring things is not as important as having basic necessities: health care, medical equipment, and physical and emotional support.  We learn the value of friendship and love.

A Mystery of Suffering:  We learn something else, too:  Happiness is not happy feelings.  There is the “quieter, deeper, different kind.”  For those of us who have had to endure hardship develop a maturity.  The deep cut to our heart, the anguish felt to the core of our being opened us, and we became real.  We are wiser.

Recent events in the United States, Brussels, France, Somalia, and Afghanistan have changed reality for the world.  There are no safe places.  We have been exposed to a sudden, permanent transformation.  The chronically ill have had a permanent transformation, as well.

Of course, the psychological impact of terrorism has a unique niche.  However, suffering demands attention.  We cannot ignore our pain, our depression, or our anxiety.  Solutions need to be found.

In trying times, we can choose to grow more real.  In the easy times, we can choose to enjoy.  In all times, we can choose happiness; the quieter, deeper, different kind of happiness.


Faith McCord is the author of the site Oscar Dandelion WordPress (click to view her blog).

 

A Journey with Bare Feet on Sharded Glass

Hawaii Beach

We might be tempted to think that life should be as easy as walking on soft, powdery sand.     I don’t know how this idea started or, even, when it started.  Certainly, it was not the mindset of people 100 years ago.  Our grandparents knew that life was hard.  Not only did they experience civil wars and world wars in their lifetime, they knew what it was like to miss meals and live without heat and clothes.  The Great Depression was a hard taskmaster, but those who lived through the tribulation learned valuable lessons: work is hard, health is precious, happiness is a choice, and life holds no promises.

My grandfather managed to get his wife and young son out of Eastern Europe between World War I and World War II.  When she arrived in the United States, my grandmother worked as a cleaning lady at night and prepared all homemade meals, cleaned her home, and used a wringer washing machine to wash clothes.  They were hard-working people, and they were happy with their simple life.

But, not us.  Even with bombings, terrorism, and school shootings, we persist in our fantasy that everything is possible if we just believe.  Somewhere over the rainbow, we adopted a cultural delusion that “dreams really do come true.”  In fact, we hear it, we see it, and we proclaim it as “the American Dream.”  We all know the mantra: If we work hard, we will be successful (as in rich); if we fail, then we didn’t try hard enough.  If we dream it, we deserve it.  All of our aspirations are within our grasp.

What happens when dreams fail?  How do we cope with disappointment?  I would venture to guess that there are more people on the road of sharded glass than on the ladder of golden rungs.  Our lives have left us in pain as our ambitions bleed onto the landscape.  Nevertheless, hope does spring forth from the sanguine fluid.

Being disAbled has afforded me the opportunity to meet many people facing chronic illness, pain, and the accompanying fear and disappointment.  We belong to an exclusive club as our lives are parsed out in days segmented by fatigue and frustration.  Still, I am amazed at the presence of hope.  Of course, we have our days of ranting against the system.  We are ignored, marginalized, and patronized.  Yet, we are a positive, realistic bunch.  How did this happen?

Living with a chronic illness requires adaptation.  As we adapt, we learn how to be creative and flexible.  Just like the Great Depression taught our grandparents hard lessons, our suffering has schooled us on being patient, persistent, and prepared.  We have faith.

The road might be paved with broken glass, but because we have faith, we have hope.

 

View From My Wheelchair: Who Is That? Do I Look Sick?

Rose Wolfe eyes

Has it ever happened to you?  You are washing your hands and, without thinking, you look up and see some stranger in the mirror looking back at you?  In that split second, you are shocked.  “Who is that person,” you wonder?

I mean, I know it’s me.  Yet, it’s not Me. It’s not the Me I was. It’s not the Me I thought I would be. It’s not even the Me I think I am.

So, who is that person looking back at me?  What do people see when they look at her?  Who do they think she is?

Just the other week, someone said to me, “You know, you don’t look sick.”   Do they mean I don’t look like someone who needs a wheelchair and is, therefore, faking it somehow?  Or, do they mean I look better than someone should look when they are mobility challenged?  What does sick look like?

Does it even matter?

This is a strange concept to me.  I don’t look sick.  Hmmm.  Does that mean that I need to wear sweat clothes and gym shoes?  Does it mean I should not wear makeup?  If you saw someone wearing sweat clothes, would you say, “Oh, look, that person is sick.”?  How about if you saw someone without makeup on?  What conclusions would you draw?

And, if I were to dress in a different way, what would I be saying about myself?  What would I be saying to you?  Some people have no choice.  They have been burdened with a stroke or paralysis.  This does not mean they are sick.  They are disAbled, mobility challenged, and dependent on a caretaker.

My reflection has changed.  My disease is changing my face.  And, I don’t always immediately recognize that woman in the mirror.  Still, she doesn’t look sick.

I keep coming back to the same question: What does it mean to look sick?  I don’t have an answer.

What I do know is that I don’t look sick because I’m not – sick.