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

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.

Thank You, and An Answer To What You Can Do Next

This started out as a Facebook status in response to all the great feedback about my article "Being A Grown Up Is Weird: On Being 22 and Still Disabled." It turned into its own little love letter. I am so thankful for all the support and I hope you will keep the ideas you have read on this blog in your mind and heart. Keep fighting the good fight. 
With love,
Kathleen

July 23, 2015
From my Facebook
"Thanks so much for all the great conversation and feedback on my latest piece. Some people may be hesitant to read, because such struggles are labeled as "depressing." It is a fact that many of the social and economic barriers placed in front of people with disabilities are very sad. But in order to make positive changes, it is sometimes, and often, necessary to talk about difficult things. Pretending these barriers don't exist because they don't go well with tea and cookies is not constructive, and simply hides the real-life struggles of so many people. 
So, let's talk about these issues. They can be very sad, but they can also ignite powerful discussions, build solidarity, and make a "disabled people's issue" a "people's issue." I don't want people to come away from this article feeling sad, but instead feeling like they have found something in society worth changing. I hope my crippy cartoons made you laugh, but also made you understand the serious issues behind them. I hope it inspired you to find other people who "give a damn" and to use that energy to begin the long process of fixing these archaic service systems. You might not have a disability, or even know anyone with a disability, but we still need you in this fight. If you have ever loved anyone or wanted a good life for yourself, these issues are relevant. Of course, I am angry that our society has allowed these issues to take shape, but I am hopeful too. Hope comes from putting hard things out on the table and working together to change them. I also want anyone reading this to understand that being honest about these barriers does not mean being disabled leads to a miserable life. I am proud of my disability, and it has brought more good to my life than bad. But I am not proud of the way disabled people are undervalued and overlooked in the world. Life is always worthy, but we can't stop asking ourselves as a society to make it even better, for ourselves, our loved ones, and for others that we have never met. A lot of people have asked me "what can I do?" to help with some of this. The issues will not be tackled overnight, but you've taken a great first step in reading about them. In the meantime, I would suggest this:
- Share these types of stories, read disability news, blogs, etc. Write about these issues yourself. Making noise around these issues will help bring attention to them.
- Write to elected officials about issues like Medicaid reform. Talk about them until those in office can't ignore us.
-To those without disabilities involved in healthcare and personal care assistance, making a conscious choice to provide compassionate, competent services is a small act that can turn the tide in a big way.
-To those without disabilities anywhere, in any community, in any field, understand that disability rights are human rights. Speak with us, not for us. Together we can change these policies, and the attitudes behind them.
-Finally, to my brothers and sisters with disabilities, make yourselves seen and heard. Sometimes, talking about this stuff feels pointless, because the system is so daunting, but remember that your voices matter. Our voices and our stories matter. And if someone tells you they don't, remember that no one else has the right to put a value on your life. Have high expectations for yourself, even when the world does not. Demand them. I will be right there raising hell beside you."

Being A Grown Up Is Weird: On Being 22 and Still Disabled

I am 22. In the world of disability, that’s shorthand for “that time you aged out of everything.” While I am proud and grateful to be an “adult,” the coming of the 22^nd birthday represents the beginning of a strange journey with lots of (unclear) signs and arrows, with enough confusion to make your party hat go a little lopsided.

image shows a split of two doodles. one of a person in a wheelchair turning 22, with a cake and party hat. The other shows the person being tossed over a cliff into a fiery pit. the cliff is marked service eligibility cliff. A stick figure on the ledge is yelling "don't forget your nursing home brochure!"

 Disabled adulthood begins quietly. Phrases begin to change. At the dawn of your 18^th birthday, not long after you’ve scratched off your first lottery ticket and tucked away your $2 winnings to invest in an absurdly overpriced piece of Velcro for your wheelchair (you will need approximately 150 more of these wins to make the purchase), you will be invited onto a rickety bridge politely named “Transition.” A tour guide will cheerfully inform you that it is time for your IEP to fall into the abyss below the bridge, and many of your weekly services such as physical therapy, which until now have been school-funded, to tumble into the underworld with it. Unicorns and butterflies will prance around gaily to mark your “transition” milestone, and it will be impossible not to notice that the unicorns seem slightly coerced into performing. Eventually, the tour guide will disappear, because your eligibility for that too is limited time only.

A stick figure in a wheelchair is riding a unicorn across "transition bridge." Heading says At First, Everything Seems Magical. The wheelie is thinking that this whole thing is too good to be true. A nearby sign says get your transition plan today!

By the time you reach the end of the bridge, you are 21, and clinging to the Medicaid care waiver that you haven’t aged out of yet. A select few recreational opportunities, which have now been branded “respite services” (because fun is for kids) have not turned you away due to your elderly age, and you gaze fondly at your world-renowned orthopedic surgeon, thinking at least I have you, my old friend. But alas, despite your secret handshake and tender “thanks for fixing my tibia” gaze, your orthopedic hospital too will ditch you as 21 becomes 22. After all the grueling surgeries together, the itchy casts and the postsurgical Lorna Doone cookies, the hospital too has declared you fit to disappear.

 on the other side of the bridge, the wheelchair using stick figure is in a shadowy forest filled with grave stones for various services such as transportation and specialized hospitals. Sign says confusion that way and thought bubble says well, *S#*! where did the unicorns go?

As you continue down this shadowy path, those around you seem surprised you still exist. Much like Santa, the Easter Bunny, and the Tooth Fairy, the Disabled Adult is largely treated as folklore. By now, that Medicaid waiver has also evaporated, as your effort to convince the program that your crushing medical expenses do not magically disappear when you turn 22 has failed miserably. With your waiver options declared a thing of youth, you are marched onward into the land of Medicaid for grown-ups. This is something of an amusement park of social services, and the entry fee constitutes most of your income.

Image shows the stick figure, a disabled adult, sitting before a perplexed Santa and Easter Bunny. Santa says, "A real live disabled adult? I have to admit, I thought you weren't real." Heading says even Santa seemed starstruck.

According to the logic of this new adventure park, in order to qualify for the programs that allow you to get out of bed, wipe your butt, and buy a new wheelchair, you must have $2000 or less in your name, because evidently, anything more means you can pay out of pocket for thousands of dollars of annual medical expenses. The fact that living a life requires funding for a lot more than medical expenses will be seemingly overlooked. When you call out the absurdity of this policy, a voice from the sky will remind you to be grateful for that wheelchair Medicaid paid for five years ago. Remember, it will say calmly, you have a wheelchair. There’s no need to fret about food, clothes, movie tickets, or anything resembling fun. Good disabled people smile sweetly and sit in their homes, leaving only for medical appointments.

Heading says: Welcome to Medicaid Land- where the sky (crossed out and replaced with $2000) is the limit. Wheelie stick figure is glancing at signs for various misfortunes such as a poverty trap. Able- bodied figure says: Hugs are available but only from an in network provider.

On the bright side, this forced poverty has allowed you to qualify for in-home personal assistance, as the state has generously recognized that you still need to get dressed. However, despite reiterating that life carries on 24 hours a day, and that the average person should pee six times a day, you will be offered about six to eight hours of help daily, as though your disability disappears when the sun goes down. Hiring people to assist you will be the next great rite of adulthood. At first, you write your job ad with enthusiasm, and delve into Google, confident that people will be anxious to fix the wrinkles in your knee socks, clean crumbs out of your chair, and listen to you sing in the shower. But as you wade deeper into cyberspace, you will see that this endeavor is a little more than you bargained for. The Internet is teeming with bubbly young people who “love to babysit special needs kids” or “would be happy to run errands for your elderly mother.” Your query for those with “a passion for lifting disabled adults” returns far fewer results. There will be whole sites devoted to care at the beginning of life (kids) and at the end of life (senior citizens), but a strange silence will envelope The Middle.

A caption reads: A thorough care evaluation, as our friend decides that he wasn't hungry anyway. A letter reads: Dear consumer, you clearly need 24 hour care. Based on your unique needs, we have allotted you six. have fun rationing them. For help choosing the right basic need to ignore, call our special services line today. Sincerely, your care specialist. 

In The Middle, it will often seem like it would be easier to find someone to brush your dog’s teeth than to find someone to put you in your wheelchair and make sure you have pants on. Your heart will leap when you discover Sittercity, then sink again when you learn that it is a hub for babysitting jobs, and not a revolutionary resource network for people in wheelchairs, who like you, have a passion for sitting. Writing an ad to be your personal assistant (PA) is a peculiar task, because not too many people know what to make of the extravaganza that is serving as your arms and legs. It takes a while to write a job description, because “put me to bed for money!” doesn’t sound quite right. When you finally hire a PA that meets your expectations and arrives regularly, it will be very hard to believe she or he is real, despite repeated assurance that she or he is not a hologram. When you have a PA you can rely on to bring you to the bathroom, you may even do something daring, like drink a soda, which in your world, is asking to pee with reckless abandon.

 Image shows a google search for "people with a passion for assisting disabled adults in a   competent manner" returning zero results.

On the transportation front, your school-funded transit to class is long gone, and if your disability prevents you from driving, paratransit will clunk into your life. Paratransit is your unreliable school bus’s evil cousin. On paratransit, you will find yourself rejoicing if the bus comes at all, never mind on time. The bus has thirty minutes to arrive, a so-called window, while you, the person with mobility impairments, have five minutes to bolt to your door. On a good day, you will be able to wipe the cobwebs off your knees in five minutes. Thus, as soon as the “thirty minute window” opens, you are forced to press your face against the window, terrified that if you bend over to pet your cat, paratransit will speed into the sunset and declare you a “no show.” No shows on the part of the driver are ordinarily attributed to Bigfoot crossing in front of the bus, vaguely described accidents, and broken GPS devices. After a few years of ridership, it will become clear that paratransit is the preferred bus line to Hell.

 Image shows a wheelchair using stick figure as an able ride bus speeds away. Thought bubble says "Wait for me. It takes me 5 minutes to move my foot."

In the midst of all these stops on your tour de adult, there are regular reminders to get a job, and smiley employment campaigns stating that “your attitude is the only disability!” When you express interest in a job, even with a stellar resume, you must prepare yourself for the shifty eyes and “erms” that follow when the potential employer realizes your “situation.” 

Image shows a wheelie stick figure left out of a job fair because of stairs. Caption says Surely his attitude was the only barrier, as onlookers tell him that he could fly up the steps if he tried harder.

Image above shows the wheelchair of fortune wheel, with chances to win various misfortunes such as bankruptcy. Caption says Charlie could hardly wait to tell 'em what they won.

 Should said employer decide to hire you, you swing between a rock and a hard place, as your first two thousand and one dollars disqualify you from receiving the PA that gets you ready for work. When you point out that you do not want to spend your entire salary on home care, and might instead, like a house, the voice from the sky will proudly show you some cardboard boxes that are within your budget. With a hearty laugh, the voice will remind you that if you think of them as Able Boxes, living in this cardboard dwelling is quite charming. Any other thought is the product of a bad attitude.

Image above shows a stick figure looking at "real estate" for disabled people represented by cardboard boxes with a cheery sales guy. He can't afford a refrigerator box so he settles for the smaller toaster oven box.

Image below shows a crowned fairy godmother offering a wheelie some more paperwork, because she is out of ponies. The heading reads: The case manager was much less charming than the fairy godmother.

A case manager, who reminds you that God is now an out of network provider, soon replaces your fairy godmother. An appointment with Him will require a referral and two hours of lengthy paperwork. Then with a bippity boppity boo will come…. more paperwork.

   

I am 22 and I am disabled. I am an adult. I am not as cute and cuddly as a toddler. I am not a sage grandmother, just a person trying to navigate “the middle” of this life. I am proud of my disability, and I love the life I’ve been given, but the societal barriers constructed for adults with disabilities make it a challenge. We are here, and we’re not going away. We don’t stop existing after childhood, so our service systems must not be designed as though this is the case. The “cliff” over which we shove our disabled adults is a moral and economic tragedy. There may be a silence about the lives of disabled people who dare to exist in the world beyond age 21, but I intend to fill the silence. And if my very existence, my refusal to be hidden away, is an act of rebellion, then so be it.

Final image above shows wheelie at various ages, birth, 11, and 22, still disabled in each frame. At 92, the stick figure remains the same, and caption says "Still Disabled. Oh, You Get the Idea!