Mystic Metals Body Jewelry
I'm switching to this electronic cigarette. There are a couple reasons why. Mostly because my grandmother is dying of lung cancer and she made me promise I'd cut down smoking. One thing you don't do to an Italian grandmother is break a promise, and they'll make you promise all kinds of things because they know how to put you in a spot where you can't say no. So I have a fake cigarette, and it's going ok. Then again, electronic cigarettes are to smoking as Rock Band is to guitar playing. But we're trying, and that matters. I think.
I hate everyone, and this fact is often very clear. Sometimes, though, I like to say it out loud to make sure it's crystal. Yesterday I discovered a new person to hate, and I'm pretty excited about that. Who is this new person? Someone I've not nor likely will ever meet. Let me drop some backstory on you so you get the entire picture. Don't worry; it's not heavy.
Sometime last summer I met up with comedian, writer, and very cool guy Gavin McInnes. How we met isn't important, but we ended up hanging out in Philly where he was gigging. Earlier that day we made a video for his website. We also ate cheesesteaks, but that's not important. The video was a comedic thing, a commentary on medicine and faith healing and those who press the idea that disability is mostly in the mind. The video is funny. Gavin acts as a faith healing kind of cat who wrote a book and is selling it on late night tv kind of guy. He tries to use his techniques to get me to walk out of my wheelchair to prove to his audience that his system works. I fall a lot and he yells at me and it's very funny. Here's the mobile link because I'm writing on my iPad. (http://m.youtube.com/watch?v=gqp8hFWR4Fw) Now onto the person I hate.
Among the comments on the video is a woman who is offended by the video. Big surprise. There's always someone who can't take a joke. This is her comment:
"this is rubbish, spina bifida is a deformity of the spine, not imagined but a physical deformity. it also does not cause pain in the lower limbs, rather it causes paralysis and loss of sensation. How do I know, my daughter was born with this condition. And I can tell you right now, the guy in the chair does not have spina bifida. Do some research people, you will see this guy is full of crap, and shame shame shame on you for taking advantage of vulnerable people!!!!!!!"
There are a couple of things in this that make me excited to hate this woman. First, her introduction (after the rubbish thing, though rubbish is a wonderful and underused word) obviously speaks to this woman's misunderstanding of the point of the video. If she really believes that we in the video really believe that spina bifida is a mental manifestation, then perhaps the power of positive thinking can cure her funny bone deformity. Secondly, she claims that spina bifida does not cause pain in the limbs. This isn't entirely accurate. There are many flavors of spina bifida, and yes, there are some which cause pain in the lower limbs. The more severe forms jump the pain train and head right to the paralysis. Also, the process of loss of sensation can be described as pain by some. Loss of sensation, be it neurologically or vascular, can instigate sensations similar to pain. See also; a sleeping limb waking. She continues with her experience with her kid, which I'll get back to in a second. Her assessment is that the 'guy in the chair' (me) doesn't have spina bifida, and that our video, our comedy video, is flawed because we don't know what we're talking about. She concludes that we are preying on vulnerable people.
Let's explore the major beats. Her saying that her kid has spina bifida means absolutely nothing to me. It doesn't matter and it's as flawed of an argument as one from a white dude talking about black issues because he knows a black guy. I understand that the woman's involvement and relationship with her daughter's brand of spina bifida is a close one, but the bottom line is that she doesn't have the birth defect so she doesn't know what the firsthand day to day of living with the disease is like. She can witness it and empathize with her kid, and her emotional response and attachment with the illness can feel fervent, but she will never know what it is like to experience life through the mind of her kid or anyone with spina bifida regardless of how much homework she's done. That's not to say that she's not entitled to her opinion, but it is to say that the sobriety of knowing that her association with the illness is peripheral is vital to her understanding what the joke is saying. Madam, I am not full of crap. I am as your daughter is but in a different way.
What she doesn't know about this video is that Gavin McInnes approached me specifically because I have spina bifida. We discussed the joke, formulated it specifically and developed it with my feelings greatly considered. Gavin's concern for my perception toward the joke was great, and the fact that I actually have the illness which is the center of the joke was key to our freedom to joke about it. We utilized (not used) an individual with the disease in order to quietly show sensitivity toward it. We didn't pick the disease out of a WebMD list like the Dane Cook spina bifida joke on his second CD (Dane Cook is as funny as a root canal), or the Jim Norton spina bifida joke on Opie & Anthony (Jim Norton is brilliant and hilarious); neither of whom have the birth defect.
I'm sure this woman is insulted because of her ignorant perception of who I am and because of her association with the disease vicariously through her kid. But at the end of the day, this woman isn't the one who spent the time in the hospital beds at Children's Hospital. She's not the one who had a catheter in her dick while her mother (and sexy nurses) watched. She's not the one who had epidurals and maleograms and EMGs and MRIs and discectomies and doctors upon doctors upon doctors touching her bikini parts during her formative years of sexual development. No, that was me. And it was also her kid. Her association with spina bifida is different, and possibly equally as difficult in watching a loved one experience these hardships. I imagine that my parents share some of her perceptions. The helplessness, the decision making, the watching her child endure physical and mental stress. But she isn't the one asking why for the sake of self. She is the one who is walking. She is the one with an able life, so to transmogrify her outrage of a portrayal of the disabled is secondhandly disingenuous.
Outrage on behalf of someone who has not spoken his own outrage is, for lack of a batter word, outrageous. Once someone propagates an outrage because he knows someone who experiences what is being parodied is invalid. She herself demanufactures her own point by saying the phrase "vulnerable people." In that alone she is saying that disabled people, or at the least those with spina bifida, cannot defend themselves and need an able person so to do. How is that equality for the disabled? If a disabled person wishes to parody or mock that which he experiences, oughtn't we celebrate that as his choosing to deal with his disability in his own way, and further draw attention to it in his own specific way? Disabled people don't need to coddled in the way in which they perceive themselves, nor do they need an advocate to troll the internet wrongly exposing exploitation. Not in this society. We need advocates for equal pay, equal opportunity, equal accessibility. Not unequal, kid's gloves treatment or portrayal of a disease which affects the individual creating the comedy. I don't need your help, and if your kid is offended, I have two things to say to her. First, let her have her own opinions instead of being spoken for by a peripheral individual. And two, toughen up; it's a joke. Be lucky anyone even cares about our disease because it isn't sexy enough to get cured.
Lastly, and I know that this blog has not the requisite amount of jokes as my normal blogs, it's about being able to laugh. Exploitation of things in comedy is important and funny. How many other disabilities are regularly the punchline of humor? Cancer, midgets, missing limbs, blindness, deafness. All of that kind of thing is used to fantastically humorous effect, and it's ok for able people to laugh. There is a difference between making a joke that utilizes a disability to make its point and hurtful mocking of an individual with an ailment. Our joke was the former, clearly for anyone who understands parody. The joke isn't that I have spina bifida. It isn't even important that it is spina bifida in the joke. What the joke is about is those who do exploit individuals with disabilities for personal gain by minimizing the actual difficulties of disabled people. Faith healing, power of positive thinking, these things to a person with an illness is a common joke. How many strangers have said to me, 'have you tried massage or changing your diet or praying to the god Zlingleforth of the planet Glinglepus 4?' It's the ignorant oversimplification of real physical malady that is the insulting part, and therein lay the comedy. Jokes are always hilarious when you have to explain them to an idiot, aren't they? On the positive side, so many people commend and compliment me on my positive attitude toward my difficult life with spina bifida when I talk and joke about it with them. Why? Because laughter helps to heal, and it helps others to accept. So who's full of crap now? Get off my crippled ass you stupid woman. Let me deal with my shit the way that is most comfortable for me and you can go shelter and coddle your crippled kid in the way you see fit. By the way, spina bifida can compound other issues as well causing pain and stiffness, so yeah; the spina bifida is causing the pain. And don't tell me it isn't until it is your spine they're cutting open, and until you're the one looking for answers that the able people like yourself don't have. Get over yourself and learn to take a joke. Stay beautiful, kids.
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