The Look
Posted on October 25, 2013 | posted by:
John Thackara notes in his book In the Bubble that “[w]e have thrust bad things in life—old age, death, pain, handicap—onto doctors so that families and society will not have to face them.” I don’t want to sweep the “bad things” under the rug, I would much rather embrace them.
When I was younger, I would almost shy away from directly answering questions about my little sister, Kyra. I didn’t want to see “The Look” again. The Look — it’s so quick and fleeting that most people wouldn’t pick up on it. It’s the expression that people make no matter how nice or caring they are when I talk about her. It’s somewhere between surprise, confusion, and pity. It’s the split-second face they make when I tell them Kyra has Rett Syndrome and that even though she is only two years younger than me she can neither walk nor talk. The Look still happens of course, but after living with it my entire life, I have learned to let it roll off my back.
I have always thought that nobody could understand my reaction to seeing The Look. That is, nobody outside of “The Club.” The Club is made up of anyone whose life has been changed by having somebody close to them who is differently abled. As frustrating as The Look may be, it is not exactly surprising why people have this subconscious reaction upon hearing about Kyra. The Look…inevitably followed by “The Question.” What was it like growing up with a handicapped sister? People in the United States today are not confronted with special needs on a daily basis and as a result they are losing—or have already lost—the ability to comprehend what life is like for people who are not able-bodied.
Thinking about this situation through a Transdisciplinary lens, I am starting to see that this is a systemic problem. As a society we are divorcing ourselves from some of the harder things in life and allowing other institutions to take the responsibility off our hands. As Donella Meadows notes, this “Shifting the Burden,” while well intentioned, can have some detrimental effects for society. It’s true that with its abundant resources the US government can, in many cases, adequately serve the special needs population. However, an unintended consequence of intervening the way that the government has is that our society has lost the skills and the willingness to care for others who have trouble caring for themselves.
I’m not saying the government shouldn’t help; they should. I just would like to see people take back some of the initiative in caring for others. We are getting better at it. Kyra lives in an apartment run by AHRC, a non-profit organization, with five other low functioning women. The staff at the Dickson-Goodman Apartment is amazing in their care for the residents. Even the employees at the neighborhood IHOP are incredibly enthusiastic and accommodating when we take Kyra out for family dinner. All these people interact with individuals with special needs on a regular or semi-regular basis, and in doing so they get a glimmer of understanding. Why stop there? Why can’t we stop outsourcing what we don’t want to deal with? How can we start designing a system that encourages us to care for others again?