The Internet was abuzz this weekend with the new video by Childish Gambino. This is America pointedly represents the serious tragedies and resilience in the face of oppression and violence–it is deep and heavy, courageous, and filled with subtle and not so subtle messages. In 2018, I wonder who dares to stand up, express outrage, and represent those with disabilities and differences in such a courageous and controversial way? The 2012 US Census Bureau reported that nearly 1 in 5 Americans have a disability, that’s almost 57 million people or 20% of the population– the largest group of a distinct minority. From what I have witnessed, those with disabilities are rarely the subject of a newsmaking rally, nor have huge social media impact with celebrity backing, nor are they a central group when we talk about diversity and inclusion. Why not?
The Census’ definition of disability: People with a disability have a physical or mental impairment that affects one or more major life activities, such as walking, bathing, dressing, eating, preparing meals, doing errands alone or doing housework. A disability can occur at birth or at any point in a person’s life. I imagine that the total number of people with disabilities is even more substantial if you count the many of us who don’t report our physical differences, either because we are ashamed or because we don’t fit that Census definition. For example, my limb difference doesn’t count as a physical disability by definition.
And, the truth is that my difference didn’t prevent me from doing anything in my childhood, I learned to tie my shoe, ride a bike, get ready for school, and even try cartwheels with one hand. I didn’t consider myself disabled. However, when I got to high school, things changed. I was at a new school, starting to really notice boys, and quite determined to fit in with the popular girls. I began to hide my hand from others. I lived with shame and constant fear of people finding out that I was different, and a perpetual fear of rejection. I also often worried about people making assumptions about my ability or lack of ability. Hiding became my armor and my way of living— people weren’t getting to know me because I wasn’t sharing my whole self. This deceptive way of living lasted for 24 years.
When I think about it now, my limb difference did become a disability; it prevented me from taking part in major life activities and inhibited me from living my authentic self. I stopped doing the things I loved like theater, sports, travel, and being active with my friends. I became a hermit in my own life.
In the rare times, when I was brave enough to show my hand, there were often subtle and not so subtle messages it might be better to keep it hidden, such as one time coming home from St Maarten on a Jet Blue flight. After celebrating a long weekend with my girlfriends, I arrived early at the airport to head home. My skin was warm and sun-kissed, and the weather was perfect for wearing short sleeves. I checked in for my flight as usual. However, just before boarding, I heard my name called loudly and frantically several times from the gate desk– the airport was small, and many people looked over with worry. I imagined some awful news– a death, an emergency. However, no, the news was that the gate attendants were changing my seat from the exit row. Initially, the attendants shared no reason; they just stated that it would just be better to have me in another seat. I pressed them for answers and exhaustedly claimed that I had paid more for that seat upgrade. They promised my new ticket would be the equivalent. Finally, after much back and forth, they handed me a blue piece of cardstock and asked me to read it; that blue card listed the requirements for the exit row– basics such as be able to perform duties, speak English, etc., nothing that I couldn’t do. The gate attendants wouldn’t talk to me. They just kept pointing to the paper and gave me a new seat assignment. I was furious and embarrassed. They had no way of knowing if I could or couldn’t handle the emergency door, and I had sat in exit rows many times before without hassle; these attendants were assuming my lack of ability and had no test to prove their theory. And, funnily enough, even with my “disability,” no one offered to carry my bags up the long flight of stairs to the plane or assist with my bag in the overhead. To this day, I still have not gotten a satisfactory answer as to why there is no strength test for everyone to show their skill at opening an emergency door. Is it true that anyone with two arms can open that door? (I should note that the requirement sheet has been updated to now include language that people must have all limbs.)
People with physical differences have been marginalized for generations. Often, our difference makes people uncomfortable. If you notice, people with disabilities are rarely seen in starring roles on television, in movies, or even in music, yet we are a significant part of the general population. We don’t have anyone starting hashtags for award shows, #soablebodied, in addition to #sowhite. Moreover, it always seems unbelievable that when a person with a disability is highlighted, one would think we were a rare breed–like the recent exposure of Shaquem Griffin. We are 20% of the population, and yet you would think we didn’t exist if you tuned into media.
Growing up I saw no one who looked like me on tv until my father brought home a VHS recording of an interview with a Los Angeles newscaster with webbed hands, named Bree Walker. It was the first and only time that I saw someone who looked different as a celebrity. I remember admiringly watching her, thinking about her career, and taking a particular interest in the fact that she was married to a hunky sportscaster. I felt like maybe there was hope for me–maybe my difference would not exclude me from career, love, and acceptance. I also remember trying to advocate for change in media when Debbie Mattanopolus left The View, I quickly found the courage and wrote to Barbara Walters– begging her to put someone with a physical difference on the show. No answer and no role model still to this day.
And, because we don’t see anyone who looks like us, many of us continue to carry shame and fear about our difference. However, the truth is that our differences are what make us interesting and unique; they are our gift and our life purpose, yet so often we try to hide them to make ourselves fit into a fictionalized stereotype of what normal is. DIFFERENCE is the norm. I am left wondering: How can we find our media champions and advocates to initiate campaigns around difference–all difference? Who in Hollywood and the media will take a real chance on those with disabilities? How do we build a community around difference? Real advocacy demands risk and courage. Accepting the differences in ourselves and those around us takes boldness and heart.
Do I have the courage, heart, and brains to share my difference with the world? My answer is YES. Do I have the boldness to support others and work to build a community around difference? My answer is YES. What about you? How will you lend your voice to join me and the other 57 million people with differences?
