With Truth and Honesty Written Across Our Faces, We, Too, Are Beautiful

me baby

A chubby cheeked cherub, just three years old, entered the operating room, escorted by two nurses.  The nurses helped her onto the operating table and began fastening her to it.   After the toddler was secured with five straps, several more nurses entered the room.  The little girl had two to three nurses on each side of her and one at her head and another at her feet.  Soon thereafter, the surgeon entered the room.  Without even acknowledging the little baby, he lifted his scalpel, while the nurses held her down.  With no general or local anesthesia, so as to save money, the surgeon sliced into her chubby little legs, performing an open muscle biopsy.  The baby screamed in agony for what seemed like hours, while her mother was forced to listen in the adjacent room.

Very soon thereafter, a neurologist diagnosed the child with Werdnig Hoffman and gave her a death sentence of five years of age.  That little girl was me, and, today, at the age of 33, I have a three inch scar on my left leg and a deep psychological scar that will never fade.  However, I refused to believe the doctor’s diagnosis.  I was obstinate in declining help from anyone.  When I stopped walking, I walked on my knees until they were raw, rather than sitting in a wheelchair.  Once I had no choice but to be in a chair, I refused my mother’s help in transferring, dressing and all other life necessities.  Over time, the doctors continued to give me less and less severe diagnoses.  Eventually, I was diagnosed with Spinal Muscular Atrophy, type III, which has a normal life expectancy.   I willed myself to be independent and to live a long and fulfilling life, including going to top universities, being in the Charlotte Youth Symphony and first chair flute at my university, becoming a lawyer, and even living abroad, in Israel, for four years.  me.mom

Though my strong will and tenacity allowed me to be independent my entire life, I could not control the thoughts and actions of others.  People have run into walls staring at me, or have approached me on the sidewalk to ask ridiculous and offensive questions. Classmates have made fun of me. Employers have refused to hire me.  And, men have declined to date or marry me based upon my disability, for fear I would be a burden rather than an asset.  No amount of strong will can heal a broken heart.

People are shocked to see a beautiful woman in a chair, and, for that, I blame the media and lack of awareness.  For years, the disabled were hidden from society, placed in nursing homes or forced to stay in their home due to lack of accessibility.  Once the ADA was passed in 1991, America changed by allowing the disabled to enter society as equals to the able-bodied.  As we came out of our houses, nursing homes and forced special education classrooms and into the light of our beautiful country, the public was ignorant as to who we really are.

For years, the media has misrepresented us. Until very recently, the media never included disabled characters on television or film.  And, when they seldom did, they portrayed us as child-like, asexual, uneducated, deformed, dying, unattractive nerds.  This misrepresentation negatively shaped society’s opinion of us, right when we were finally given equal rights and the ability to enter the world and live life.  Even today, when we see disabled characters on television, they are almost always played by able-bodied actors and falsely portray the disabled community.

Society needs to see the truth about disability.  And, that is: We are beautiful.  We are intelligent and educated.  We are successful.  We are sarcastic and funny.  We are fashionistas.  We are sexual and desirable.  We are not a burden.  We are an asset.  We may use a wheelchair or have differently shaped bodies, but we are no different than the able-bodied.

There is no better way to show this than through the honorable position of Ms. Wheelchair North Carolina.  If I am given this honor, I hope to make the public aware of who we really are; to encourage television and film directors to have more disabled characters and actors; to make employers realize that we are just as capable, in some cases more so than the able-bodied population; to make politicians realize that we do get married, but are discouraged from doing so for fear of losing our benefits; and to demonstrate to society that we are no different than anyone else.

We should all remember the words of Eleanor Roosevelt, the wife of our only disabled President: “No matter how plain a woman may be, if truth and honesty are written across her face, she will be beautiful.”  Be true and honest to yourself, strive to be the most you can be, live a fulfilling life, and show the world that, despite our physical and psychological scars, as well as sometimes misshapen bodies, we, too, are beautiful.

rise above

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