Wake Up, Smarten Up, Rise Up | How a Genetic Disability Inspired a Life of Service
Living with a genetic disability inspires a lifetime of service — and overcoming biases
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On a flight to Los Angeles, I cannot concentrate on the important UNICEF speech on the global refugee crisis that I should be writing to be presented at the Annenberg Space for Photography. It’s a really big deal.
But my mind is racing and my heart hurts after being totally stunned by the actions of two airport TSA (Transportation Security Administration) agents who insisted on giving me a security screening known as a pat down in a private room. This is usually done in a wheelchair out in the open.
This time, however, as I struggled to stand, they posed a question that I wondered was even legal to ask: “Were you born like this?”
Obviously they were referring to my weakened body and the fact that I needed to lean on the wall, as well as my walker, in order to stand. While I invite inquiries about my condition to raise awareness about disabilities and break down stigma, their tone was not one that made me feel empowered in that moment.
I quietly explained that while I was born with a genetic defect, HIBM (Hereditary Inclusion Body Myopathies), a rare type of Muscular Dystrophy, the ‘impairment’ did not manifest itself until adulthood
