I Choose to Live

January 23, 2013

I was given another opportunity to speak up for the disability community today.

We were discussing the ethics of abortion and genetic screening of the unborn fetus in philosophy class today. We ended up debating the ethics of aborting a fetus with a known disability or genetic disorder.

I could not keep my mouth shut. Not one to sit quietly while discussion treads upon the fine line, I spoke up. I looked at my classmates as I explained the nature of my disease and the effects it had on myself, my parents, my siblings and my friends.

I continued elaborately explaining how the people I’ve worked with and met as a volunteer at a therapy center for children with developmental disabilities, a tutor at my state’s school for the deaf and an advocate with my state’s coalition of self-advocates has shaped my views. From the woman with no hands who paints better than I ever could to the man who could not hear the beautiful music he created. From my deaf mentor whose own disability inspires his scientific curiosity as a professor of medicine to the wheelchair bound law student I recently had the privilege of getting to know over coffee.

These amazing people did not get to choose the hand they were dealt, yet they play one hell of a game anyway. To even think that they could be denied the chance to shine because society has not yet come to terms with reality brings tears to my eye and my heart. The reality is that disability does not play favorites. Everyone will experience disability in one way or another in their lifetime.

When asked by one of my classmates what I would have chose knowing I’d be born with this horrible disease, I responded simply,

“I Choose to Live.”


Getting Ready

February 20, 2012

If all goes through, my volunteer work will consist of working in a shelter for homeless men, working with children with handicaps and visiting the sick in the hospital under the guidance of a pastor. On top of this, I’m hoping to perform scientific research at the Oregon Center for Hearing Research under the direction of a deaf professor of head and neck surgery in the not so distant future.

The volunteer work will only last a month as the vocational rehabilitation office wants to observe my work ethic before they will agree to pay for my college education, but I’m hoping to turn it into a long term experience. In any sense, they’ll only pay for my undergraduate studies and not medical school. Nonetheless, there are educational grants and loan repayment programs available for doctors willing to serve an underserved minority patient population. I believe my experience as both a Deaf American and a Latin American would serve me well as I would want to focus on these patient populations in my practice. I’m especially interested in serving the culturally Deaf who have great difficulty finding culturally sensitive medical care in our predominantly hearing world. I imagine Deaf people would be willing to commute an hour or two away to be treated by one who understands their self-identity and moral values. Not only that, if I worked in an academic children’s hospital, I’d be a popular option for referring doctors who agreed that their Deaf patients would receive better care under my service.

So much to think about and look forward to. I’m excited to be at this point in my life where a dream I’ve always had finally seems within reach.

The Sound of Science

February 12, 2012

The moment I saw the article headline, Peter Steyger, PhD, Publishes Immensely Personal Breakthrough on Drug-Induced Deafness, I knew it was a sign. The very institution that had my heart longing to become a physician since I was a small child had a deaf professor and medical researcher educating and discovering within its very walls. Surly this was God saying to me, “You are on the right path, my son. I know it is a difficult and lonely path, for this reason I have given to you a mentor. Learn from him, my son. Learn as much as you can from him so that one day you, too, can mentor another who was chosen to walk the path less taken.”

I will, God. I will.

A Lesser Being (Part 1)

December 10, 2011

I unboarded the county bus and made my way to where the city buses boarded. I boarded a random bus to take me to a part of the city I had not yet seen. I took the bus, being sure not to go too far that I couldn’t walk back to the transit, nor to unboard too far from a bus stop. The idea was to get off at a random location and look for medical offices and clinics to inquire about job shadowing and volunteer work opportunities.

If Google Maps is to be believed, I walked for a ninth of a mile before spotting a pediatric clinic. Since I love children and am fairly sure I want to work with them specifically as a doctor, I considered this a fortunate turn of events.

I made my way inside to a rather shabby looking interior. There were other people in front of the receptionist desk, so I took my place in line. The line moved quickly enough and I was soon faced with a receptionist. As I explained my purpose for being there, my college statues and provided references to confirm my story, I was given rather hurtful glares by the receptionist. As I wrote down my contact information, the receptionist twiddled a pen with her thumb and index finger, giving me a look that clearly told me two things: first, she did not want to be within ten feet of me and was evidently disgusted with my presence; second, she did not feel I was worthy of observing a physician in his or her workplace and that my life goals were merely an annoyance to her workday. Nonetheless, I remained adamant, impervious to her barefaced glares and determined to stick to business. As I wrapped up my descant and thanked her for her assistance, I offered her my hand to shake. She glanced at my hand, acknowledged its presence with a nod and turned her back on me to walk away. My hand still in midair, I stood there dumbfounded and dazed. I lowered my hand, turned to the exit and walked out.

As I walked away, something inside of me wanted to turn back, reenter the clinic, walk back up to the front desk and firmly, yet calmly state to the receptionist, “I’m human too.” I did not turn back, but rather I kept walking onward and away, angry voices screaming in my mind.

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