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.

 

 

The rePurposed Life

The rePurposed Life

When I started writing this blog in February, I wanted to engage the topic of living outside of our disAbilities. After all, everyone struggles with a disability and not all struggles can be neatly categorized (nor acknowledged by the afflicted).

My disAbility is obvious. Your eyes rivet to my rolling chair as I enter the room. The first seconds of meeting, we negotiate a social awkwardness.  Eventually, I come up with a  lighthearted quip, hoping to put everyone at ease. With children, it is different. They stare at me until their parent becomes uncomfortable. I don’t mind their straightforwardness. They are real and honest with curiosity.  As our eyes meet, I smile and try to elicit a response. It allows me to engage with them about their unanswered questions.

Anyway, because I have failed and succeeded in my new role as a physically disabled person, I thought my focus would be on encouraging anyone who is struggling. My mistake was focusing on “disabilities.”

My life is not about my physical and mental limitations. It is about finding a rePurposed Life. Moving forward from a scared child to a petulant youth. . .until, finally, an earnest adult. But my disease changed me further.  It was another twist in the narrative of my life’s story – a page turner.

Because of (and in spite of) muscular dystrophy, I reexamined my life again. I found it wanting – lacking vision.  What did I desire?  Over and over, I asked myself to define my purpose. The answer exploded in my heart as I watched one, two, three, four, five people die. What legacy did they leave?  What legacy did I want to leave? To love others (family, friends, neighbors, enemies) and to encourage them.

Yes. It was time to take the focus off of me, the petulant youth who never grew up. I want a life that has meaning – with God centered.

No preaching. No condemnation here. Just honest conversations about how we think and what we do.

So, I am thinking about renaming my blog from Living Free with Disabilities to The reRepurposed Life. (The url will remain http://livingfreewithdisAbilities.com.) What do you think?