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Monday, September 28, 2015

My Book Review of Laughing At My Nightmare by Shane Burcaw


I used to be a fan of Shane Burcaw. I had read and enjoyed a couple of his articles, and I liked his idea that humor is a great way to connect with others. So, when I picked up a copy of his book Laughing At My Nightmare this week, I expected a fun read and I was excited that someone with a severe physical disability like me was finally being heard in literature. A couple of days later, I finished the book and I am disappointed to say that rather than finding a funny, relatable fellow wheelie in its pages, I found a cocky smartass who seems to have found his confidence in putting other people with disabilities down. Almost immediately, Burcaw emerged as a person who seems to have made it a personal mission to declare himself superior to others with disabilities, using what could have been a powerful instrument for respect toward our people to “other” those in the group whom he views as less successful at being “normal.”
Just one of the many passages that made me cringe in this book is Burcaw’s snide appraisal of the other participants in a Challenger sports league. With the air of a class A snob, he writes, “One of the first things I noticed while waiting for the other players to arrive, was that all the kids seemed more disabled than me. I am not making fun of these kids, just telling you the truth. Most of them were either talking to themselves, drooling, having severe tantrums, or trying to escape from their wheelchairs. I immediately felt out of place” (pg. 108- 109).  Gee, for someone who is not making fun of others, Mr. Burcaw, it sure seems that you are. He could have said that Challenger just wasn’t a good fit for him. There would be nothing wrong with that. Instead, he chose to make a caricature of the other kids to elicit cheap laughs in a culture that insinuates that people who are “drooling” are not quite as human as “the rest of us.” Burcaw’s very choice of the phrase “those kids” hints at his sense of elitism and the suggestion that he is somehow a better kind of disabled. 
My dismay only intensified as he smugly commented “Challenger bowling was fun for a couple of weeks until a kid in my lane had a severe seizure during laser bowling” (pg. 112). Again, Burcaw used someone else’s vulnerable moment to score laughs, and essentially blames the kid’s seizure for ruining his fun. I’m sure that no kid plans to have a severe seizure, and a little empathy, the same empathy I’m sure the author would want during a medical crisis, would have been nice. He finishes this chapter by declaring, “That was the end of me trying to participate in sports leagues with my wheelchair brethren. I just couldn’t fit in or have fun with those kids” (pg 112). If only Burcaw had the brain (or the heart) to realize that “those kids” are human beings just like him, not some alien race that he has surpassed with his superior social skills. If an able-bodied person had dismissed him as unequal to people without disabilities, I assure you that he would be up on his soapbox. His attempt to make a spectacle of the other disabled kids reveals a lot more about his own insecurity than anything else.
As I read on, the holier than thou attitude practically leapt from the pages, and I found myself laughing- not at Burcaw’s jokes- but at the sheer hypocrisy of this young man who wants others to treat him with respect in spite of his disability. Clearly, he is under the impression that achieving “normalcy” relies on separating himself from those who are different in other ways, and trying desperately to emphasize how “not like them” and “just like you” he is before an able-bodied audience. If he is trying to be “just like” immature young men who degrade others to inflate their own egos, then he has succeeded. The few decent passages, which provided some much-needed candor about disabled living, were overshadowed by similarly haughty remarks. His chapter about his experiences at MDA summer camp was perhaps most disturbing. He writes, “When I arrived on the first day of camp, the first thing I noticed was that all the other kids were, or acted younger than me, which instantly gave me second thoughts about letting my parents leave me there for a whole week. I could smell immaturity in the air” (pg. 83). He proceeds to make fun of other kids who were playing with balloon swords as though he were just infinitely cooler at the time. The main difference between him and them is that they were being goofy and celebrating life, while he worried about what other people thought. Another “observation” Burrow made was that none of these kids had shoes on. Some had on socks, and most just let their “bare feet flop around in the breeze”(pg.84). In the same self-important manner, as though he passed some social acceptability test the rest of us failed, he acknowledges that all of them had “severely atrophied ankles like his” but he wore “normal shoes” over his splints because he “often went out in public, where wearing shoes is the socially acceptable behavior” (pg. 84). Other than filling me with rage, these observations, based on the hasty judgment that going without shoes was the result of social ineptitude, made me very sad. The tragedy here is not that the other kids skipped shoes, but that Burcaw is so invested in what others think is acceptable that the only explanation he had for the kids’ behavior is social ineptitude. Maybe they were just enjoying the breeze. Maybe their braces made their feet feel like they were in a plastic sweatbox. Maybe they were having fun at camp, among their friends, and didn’t give a crap about what anyone beyond the camp’s walls would call acceptable. Oh. And maybe they can't wear shoes. There's that.
He continues that “gross, atrophied feet hanging out for everyone to see were just another reason for people to be hesitant about engaging with me as a normal human being. I started to feel extremely uncomfortable when I realized that none of the other kids understood this concept” (pg. 84). Hello, insecurity! What Burcaw is missing here is the very magic of camp. The other kids “understood” a concept he so clearly did not. Their feet were only “gross and atrophied” through the lens of an ableist perspective. At camp, they could be a different kind of normal, even beautiful, because in a place like camp, the usual standards of normal don’t exist. I grieve for him that he misconstrued their peace as social ineptitude, and I sure am glad that I was never taught to let the world’s idea of “normal” keep my weak, twisted, and beautiful legs hidden. This nauseating chapter concludes with a smug declaration that “luckily, the counselors at the camp realized I was slightly different from the other kids” (pg. 84). It is more than a little condescending to imply his social superiority, as though he has perfected the art of being desirably disabled among “those kids.” How he can expect people without disabilities to accept his differences when he can’t accept the same differences in others is beyond me.
In his similarly distasteful chapter about riding a special education school bus, he takes more cheap shots at the others on his bus, describing “Brandon” as a man in “his early twenties, but because of his mental disabilities, behaved like a young child” and noting that he “smelled like he always had a large pile of poop in his pants” (pg. 103).  At this point, my reaction was visceral. These demeaning descriptions of real people, whom he has made into objects of ridicule, say a lot more about Burcaw than “the other kids.” Were he really full of the confidence he claims to be, more of the book would be devoted to his accomplishments, instead of his ability to make fun of others in a way that the media will find witty. It’s not cute; Mr. Burcaw, and neither are your descriptions of mentally disabled gym classmates as smelling “like they had atomic bowel movements in their pants” (pg. 128). First of all, I find it hard to believe that his classmates were the smelly people he portrays, and if they were, shame on him for using them for a quick laugh rather than wondering if the smell was the result of them not getting the help with the bathroom that they needed. The grand irony here is that Burcaw and I both, without appropriate assistance, would be left to sit in our poop, and I’m sure that neither of us would enjoy such a moment being taken and used for others’ entertainment.
I could go on, but that would be another book in itself. The bottom line is this book could have been a refreshing, exciting departure from inspiration porn or medicalized portrayals of people in wheelchairs. But it wasn’t. Burcaw is asking the world not to treat him poorly because of his disability. He is asking the world to laugh and embrace him. However, he obviously lacks the skill and finesse to lift himself up without bringing others down. I hoped to find a “friend” in the pages and to see some of the wit and confidence the critics have been raving about. All I can see is an insecure young man who feels that calling other disabled people awkward is a way to prove his own worth.
So, Mr. Burcaw, you’ve just lost a fan. And contrary to your sage advice, I will leave my shoes off as I please. My atrophied feet don’t need your approval.

Image: Shane Burcaw's book cover, an image of him seated in a power wheelchair with a thought bubble that says "Sh#!" and the words: laughing at my nightmare.
Source: http://static.tumblr.com/8c6fc8c45ee0b26fcb3607bba3489b6f/ewwtiuo/4Nmn9lc7t/tumblr_static_83c5m3vcmcso4k8cwso0008o0.png

Saturday, September 26, 2015

Why the "McDonald's Employee Feeds Disabled Man" Story Doesn't Inspire Me

I’m sure you all have seen it. Something unbelievable has occurred. A person without a disability helped a person with a disability. This week on Buzzfeed, there has been quite a lot of… well, buzz, about a McDonald’s employee stopping to help a man with a power wheelchair cut his food in Chicago. A young girl, Destiny Carreno, proceeded to photograph the event, and as of today it has more than 250,000 “shares” in cyberspace. The Internet is lighting up with lots of “ooohs,” “ahhs,” and “that’s inspirationals!” Ask me what I think. Please do. And I’ll tell you this isn’t news. Not news. Not news. Will never be news.
Don’t misunderstand me. Kindness is a great thing. Acts of kindness make the world go ‘round. But just because the receiver of kindness is disabled, it doesn’t mean that this should be viewed as anything other than ordinary. Putting able-bodied people on a pedestal for showing kindness to disabled person makes it seem as though we are meant to be ignored, ostracized, or forgotten unless an able-bodied person feels like paying attention to us. What’s more is that Carreno photographed the scene without permission, and posted it for all to ogle at as though the disabled man were a museum piece, an exhibition used to earn “likes.” In all the news coverage, the employee is identified as Kenny. And the disabled man? Has no name. It is unnerving that in the year 2015, able-bodied people are still given excessive praise for showing disabled people basic civility. In stories like these, which make a spectacle of the daily lives of disabled people for the sake of a “feel good” moment, archaic attitudes of pity and paternalism are allowed to persist.
 When we sanctify others for helping people with disabilities, we reveal the saddening truth that authentic inclusion remains the exception and not the expectation in our society. True inclusion happens quietly. There is no fanfare. There are no cameras. There are only people, who support each other because that is the way a community works. Articles like the one about Kenny, on the surface, seem to show how “far we have come.” Upon closer inspection, however, the fact that a story like this is considered news only shows how far we have to go.

People with disabilities are not nameless, faceless commodities that exist to make others feel good. We do not exist to be passive recipients of help, or to be the benchmark for your compassion. And if simply being with us is the making of a news article, then inclusion…or even basic generosity, is still too rare for comfort. And let it be known, once and for all, that disabled people can give help too. So, before you click “like”, consider this. Perhaps this man with a disability only wanted to eat his lunch. Perhaps Kenny only wanted to help him out, and thought of his decision as nothing remarkable. And then consider this. What a remarkable world it would be if people with disabilities were counted as neighbors, friends, parents, siblings, employees, sons and daughters who deserve to belong at all times, and not just when the media needs a “touching” video. Events like these should be so ordinary that onlookers yawn and go back to trying out Instagram filters on photos of their food. We’re not specimen. We’re not fodder for your service project or objects you can use to prove your own morality. If you want to feel warm inside, get a cup of coffee. There’s plenty to go around at McDonald’s.

Author's note: If you need the context of the news article, please Google it on your own. I figure it's best not to provide a direct link, in order to not further contribute to the vast number of people participating in the consumption of inspiration porn.