Monday, December 26, 2016
As in years past, my Christmas day was spent with family, sitting around the fire wearing reindeer-printed sweaters, drinking mimosas, and occasionally attending to a special on TV. While catching a glimpse of some program, I was presented with an opportunity to educate on ableism. Normally, I would bite my tongue, sip my drink, and wait to rant about it with friends later. On this Christmas day, I decided it was imperative not to miss the valuable opportunity to spread awareness.
In response to a segment on a woman’s experiences with Down syndrome, my mom stated, “how absolutely horrible to be a downs.” My mom had no intention of causing offense. She meant to express gratitude for our family’s privilege. Nonetheless, I was triggered and felt the need to hop on my soapbox.
My first response related to biased language. I explained the difference between her phrasing, which defines a person as a “downs” - and using person-first language that includes the disorder as something the person experiences (rather than as their entire identity). I emphasized that a person has many identities, including disability status, and categorizing a person with a label, like saying someone is a “downs,” can be interpreted as offensive and limiting. I offered alternatives such as saying someone has been diagnosed with Down syndrome or experiences Down syndrome.
Then, I explained why I found the phrasing "how absolutely horrible" judgmental. It is undeniable that Down syndrome can make life more challenging. At the same time, we all encounter adversity that makes life more challenging. For some, it’s being bad at math; for me, it’s having low vision. Regardless of the challenge, it’s not ideal, and it’s also not unequivocally unsurmountable. For something like being bad at math, we envision a fulfilling life despite that challenge. We would never presuppose that life is "absolutely horrible" because of that challenge. Down syndrome is simply another form of challenge, one that does not preclude happiness, wellness, or success. In other words, I find it presumptuous and inaccurate to believe life would be "absolutely horrible" if it included a specific challenge, in this case Down syndrome.
Although Christmas may not seem like the prime time to educate about ableism and identity, I stand by my decision to share my perspective.
Posted by Jen Pearlstein at 1:02 PM
Wednesday, December 14, 2016
He used the strength of his arms to propel his body into the air, balancing on his crutches, thrusting his torso and leg over head. He switched from one crutch to the other, elegantly twisting back to standing. He twirled his crutches proudly, using them as props in his acts. Much like the other performers on stage, he masterfully commanded his body, isolating and contorting his muscles. This was the first time in my life I have seen someone physically disabled featured in an acrobatic performance. Actually, it’s the first time I’ve seen someone visibly physically disabled in any “mainstream” athletic, theatrical, or musical performance. I watched this man, feeling inspired and grateful, at one of the Cirque Du Soleil shows in Las Vegas.
This man displayed that people with disabilities may perform differently, and it is often in this difference that incredible talent emerges. He could not dance the way the able-bodied dance. He could not walk the way the able-bodied walk. Yet, he moved his body in ways that the able-bodied cannot. The strength of his arms enabled him to position his body in various inversions. His familiarity and comfort with his crutches enabled him to use them as extensions of his arms, on which he balanced as if he were a gymnast suspended in the air on rings. It was because of - not despite of - his disability that he elevated his artistic medium with innovation.
I highlight this experience with no intention of subjecting this man to “inspiration porn.” It is incredible what he has accomplished, as it is incredible what the other performers on stage have accomplished. Instead, I hope to highlight the equity and inclusion demonstrated by Cirque du Soleil in featuring this talented performer. The choreographers of the show undoubtedly modified routines to best suit his needs and strengths. I applaud the flexibility and courage demonstrated by the many who facilitated his artful participation.
It is obvious that people with disabilities are forced to navigate the world differently. The challenge arises when others assume navigating the world differently accompanies more difficulty and less enjoyment. I have been asked how I adore shows like Cirque du Soleil. “Can you see well enough to really appreciate it?” The question assumes that if I am unable to see, I am unable to experience. Although I certainly see less, this does not mean I experience with less enjoyment. I can, and do, value art, theater, and athletic performances. I do so with all my senses, which happens to mean with less visual acuity. Doing things differently does not mean enjoying them – or experiencing them – any less.
Likewise, this performer was an equal part of the performance, dancing and contorting differently, but no less gracefully. This man was both part of the larger dance numbers and highlighted in solo acts. He was a member of the cast like any other. His integration in the performance reveals that the disabled can and do fulfill the demands of challenging fields.
Seeing this strong, talented, artistic performer with a disability displays that it is possible to have a profession as an acrobat and a dancer and have one leg. Given the dearth of role models with disabilities across professions, I watched this performance with a full heart. It is rare to see people with disabilities in esteemed positions. It is rare to see people with disabilities in performances. Thank you, Cirque du Soleil, for challenging these cultural and social norms of ableism.
Posted by Jen Pearlstein at 3:34 PM