When Diagnosis Isn’t Distinct

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By Mark E. Smith

If someone with cerebral palsy told you that he wanted to attend a camp for those with muscular dystrophy, then go to the annual Little People Of America convention, then join a multiple sclerosis support group, you’d likely think that he’d lost his mind. After all, why would someone of one disability want to engage in activities exclusive to those who have other disabilities?

Why not, I ask? I mean, sure, I understand that there are intimacies of certain disabilities that are only truly understood among those sharing the precise condition. Yet, in the larger scheme, we’re all living under the umbrella of “disability experience” – so, why should “diagnosis” matter when we define who’s qualified to attend disability-specific events?

Oddly, many with disabilities will tell you that I’m wrong, that there are dramatic differences among those with disabilities solely based on “diagnosis,” where they believe that there are clear distinctions between, say, one with a spinal cord injury and a one with muscular dystrophy. Yet, again, I say not so fast.

The fact is, in the world at large, disability is a universal term that applies to all of us with physically limiting conditions, regardless of literal diagnosis. If you lined me up with a person with muscular dystrophy, one with spinal cord injury, one with dwarfism, and one with multiple sclerosis, and asked an average person from Main Street America what was distinct about our group, he or she would likely note that we each have a disability. And, that’s arguably how we’re seen at large – not remarkably distinct by diagnosis, but simply viewed as physically disabled. In fact, I can’t count how many times a stranger has asked me if I had muscular dystrophy, multiple sclerosis, or any number of disabilities beyond the condition of cerebral palsy that I have. Again, many in the mainstream recognize physical disability, but have no discretion toward specific diagnoses of disabilities – that is, they see little distinction from one “disability” to the next.

Yet, as those with disabilities, we often categorize ourselves as distinct from each other based entirely on diagnosis. We have our own subgroups, and, for the most part, draw social, political, and charitable boundaries around them. Those with spinal cord injury don’t attend little people conventions; those with cerebral palsy don’t attend muscular dystrophy camps; and, the visually impaired don’t attend multiple sclerosis walks. For many of us with disabilities, we hang out with our “own kind,” only support the charity organization for our own diagnosis, and we don’t pay much attention to the progress or research concerning other conditions.

However, from a practical perspective, the fact that we create these boundaries doesn’t make sense. Fractioning ourselves by diagnosis actually diminishes our power to bring change within the mainstream for all with disabilities. For example, it’s fantastic when 10,000 people march on Washington in support of themselves and loved ones with multiple sclerosis, but think of how much more of an impact would be made if people with muscular dystrophy, cerebral palsy, spinal cord injury, visual impairment, dwarfism, and on and on, showed up in support of multiple sclerosis as a cause, too – it would be epic. And, what if all disability causes supported all other disability causes, as well – it would change the social-political climate for those with disabilities in a heartbeat, making us an equivalent force to the AARP, per se.

To use a metaphor, it would be wise for individual farmers in a region to fight to save their individual farms, with each farmer lobbying for his or her own needs. However, if all farmers united as a single body to save farming in the region as a whole, they’d have a lot more socio-political power. Those of with us with disabilities need to see beyond our individual farms, and recognize that the plight of our neighbors is equal to our own, and by joining them, we find strength in numbers.

As one with cerebral palsy, I whole-heartedly support the Muscular Dystrophy Association, and at a recent fund raising ball, I was touched by how many people with disabilities other than muscular dystrophy were both in attendance and donating to the cause, as well. But, one particular gentleman with a spinal cord injury in attendance recognized my cerebral palsy, and questioned me. During the event, they publicly recognized contributors, and he saw that I sponsored a camper to attend MDA Summer Camp. Out of clear curiosity, he asked me why I would sponsor a child with a disability different than my own? My answer seemed common sense to me: “I don’t care about diagnoses; rather, I care about those with disabilities,” I explained to him. “I had a blast at summer camp as a kid, and I trust that the same holds true for kids with disabilities nowadays. So, it’s not a cerebral palsy or muscular dystrophy thing to me. It’s simply a kid thing.”

And, that’s an empowering realization: As those with disabilities, we aren’t ultimately divided as subgroups, but united as one, with remarkably common experience. When we encounter others with disability, we should care less about his or her precise diagnosis, and instead focus on the fact that we’re in this realm called disability together – recognizing a unity between us, where we’re all ultimately of one community, of one common experience. I say, let us possess the presence of mind to support each other as people, not diagnoses.

Mr. Flynt… About Your Wheelchair

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By Mark E. Smith

Dear Larry,

I’m writing to let you know that you’ve ushered in a new day in America – at least for me.

It is true that I long lost sleep over you. I confess that you made me question my ideology that no one has a right to judge another’s choice of mobility. I mean, I truly don’t care what type of wheelchairs others use – if it works for them, great. Yet, you, in your lithium-induced haze, were the exception. Truly, I wished myself to sleep at night hoping that I could somehow bring your decadent, swinging soul into the twenty-first century with a modern wheelchair. I mean, really, Larry, why did you insist on using hospital-type wheelchairs for decades when mobility technology has come so far? You’ve made hundreds of millions of dollars exploiting others, so why not put some of that scantily-clad cash toward a good cause like a high-tech wheelchair for yourself?

Yes, I understand that your mind is often occupied with prescription medication, barely-coherent voices ranting about freedom of speech, and ambitions to further your pornographic empire. However, behind your glazed eyes, there must have been some room for consideration of improved mobility for yourself, right? After all, you demonstrated some sort of reasoning in gold plating your 40-year-old hospital-type wheelchair, so you clearly considered your mobility on some level.

But, alas, Larry, you have been redeemed, seen out-and-about in your new wheelchair, a gold-plated ultralight. No, I don’t know how one gold plates an aluminum wheelchair, but damn it looks good with your white, patent leather loafers.

Oh, Larry, aren’t you glad that you finally made the switch to a modern wheelchair, where your bodyguards have an easier time stowing it in your limousine, and where your adult film star dates have an easier time pushing you down the red carpet?

Surely you must. And, Larry, your new ultralight manual wheelchair must be easier for you to propel, too, right? In fact, I can imagine that you have much more energy now throughout the day, no longer struggling to move around the gaudy, red and gold decor that you call an office, with much more energy to do the activities that you most enjoy – like smoking fine cigars while pontificating about pornography.

Enjoy your new wheelchair, Larry – you wild and crazy guy!

-Mark

Dearest Mariah, RE: Dr. Hawking

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By Mark E. Smith

Maybe I’m naive or eternally optimistic, but I truly root for whack-job celebs, where I want to see them turn their lives around, where they would prove the world wrong. After all, as one with a disability, some people project traits on me that aren’t accurate, so I fathom that the same could be said about celebrities. Sure, I see Britney Spears wigging out each night on the cable news networks; however, part of me wants to believe that she’s just misunderstood rather than a drug-addicted, bipolar, child-neglecting, egomaniacal, nut-job who only wants to get her groove on with losers. I mean, we all have bad days, right?

And, so this brings me to another kookoo celeb who I root for: Mariah Carey. Now, my take on Mariah Carey is that she’s so beautiful and vocally talented that I desperately want to know that she’s not the crazy cliché that the media portrays. Every time I see her on television, I get up close to the screen, hoping to hear some kind of proof that her IQ is a higher number than her dress size. Please, Mariah, utter the words I want to hear – quote Nietzsche or explain macro economics – prove to me that there’s not just a loose marble rattling in that overly-hair-sprayed head of yours. 

But, alas, Mariah shattered my hopes again this past week, noting that she wants Stephen Hawking’s augmentive communication device so that she doesn’t have to speak or write: “Before a big show I have to do ‘vocal rest’ where I’m not allowed to speak for two days. It’s so boring having to write notes to everyone! I need Stephen Hawking’s voice machine for when I’m on vocal rest,” explained Mariah.

As if her statement isn’t silly enough, there are reports that she went on to say that using Hawking’s communicator would make her sound smarter, too.  

Apparently Mariah is completely clueless to the whole disability thing, not understanding that Dr. Hawking doesn’t use a communicator because he’s a hip, Hollywood cat, but because he needs to as a result of ALS. Well, I guess someone should bring her up to speed on this, and it might as well be me: 

My Dearest Mariah, 

I am writing to you on the subject of Dr. Hawking’s augmentive communication device – or, “text messenger thingy,” as you might call it. I would convey this correspondence in the form of a coloring book for your best understanding, but my drawing skills are on par with your acting skills – that is, very poor. Therefore, please excuse any polysyllabic words in this letter that may confuse you. 

Firstly, I shall point out that Dr. Hawking has a condition called amyotrophic lateral sclerosis (ALS), which affects his speech, and requires him to use his augmentive communication device to communicate with others. And, no, he doesn’t use it just because he doesn’t want to write, just like guys don’t date you for your worldliness. In fact, Dr. Hawking’s communicator is truly a tool of liberation, allowing him to live a highly-successful life, including dictating books that you wouldn’t understand and teaching college courses to which you can’t enroll (see, outside of Hollywood, the rest of the world has something called “standards”). 

Secondly, please understand that Dr. Hawking’s communicator doesn’t make him smart. I know that you look into a mirror for hours like a parakeet, thinking that there’s someone talking back at you, but I hope that you can recognize that Dr. Hawking’s communicator merely speaks the words that he inputs into the device, a process called text-to-speech. Put simply, the reason why Dr. Hawking sounds smart is because he is, just like the reason why you sound like an overmedicated airhead is because… well… you know. 

Lastly, while you may not fully understand why it’s in entirely in poor taste for you to make light of Dr. Hawking’s communicator, I have one final reason why you should think twice before wanting a communicator of your own: You have to know how to spell to use it. I thank you for your time, and I look forward to seeing you on the next season of the show “Celebrity Rehab.” 

Hugs & Kisses,

-Mark

Pop-Up Disability

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By Mark E. Smith

What ever happened to the Internet as the great equalizer, where our disabilities weren’t supposed to matter? How is it now that seemingly everywhere I surf on the web, so-called disability-related banner ads are plastered on my screen, illustrating that someone somewhere has me clearly tagged as a web surfer who has a disability?

My brother-in-law is a computer geek by profession, so he clears my cookies and caches, and all of the other cyber stuff floating around in my machine that can splatter my Dell’s DNA on the Internet. Still, when I log on to sites like Google or MySpace, disability ads blaze across my screen (how is it that the MySpace staff can’t tell a 41-year-old perverted predator from a 14-year-old Hannah Montana fan, but they know instantly that I have a disability the minute that I log on?).

One theory for my getting pegged as a wheelchair user online is that because I visit my own site, WheelchairJunkie.com, that other sites that I visit simply see ”wheelchair” as a popular term in my browser, and cater ads to me accordingly.

Nevertheless, what amuses me is that the so-called disability ads steered toward me as a demographic are always totally wrong. I often get an ad pushed at me for an adjustable bed, with a 70-year-old lady propped up with a fried chicken TV dinner on her lap. Show me a 25-year-old blond, in a bikini, on a water bed decked in silk sheets, and then I might click – but, show me 70-year-olds eating fried chicken in bed, and I’m clicking the other direction in a hurry.

My favorite disability-related ad is one I call “Gangster Guy,” which pops up every time I visit Fox News (which I guess I deserve for visiting Fox News!). I’m so distracted by Gangster Guy’s ridiculous nature that I don’t even know what he’s advertising, but if you’ve seen him, you know who I’m referring to: He’s a thugged-out gangster-looking dude in a wheelchair, complete with baggy Sean John jeans and a Gucci hat swiveled to the side like he just rolled out of an inner-city rehab, gunshot wound and all. Yet, in all seriousness, what disturbs me about the ad is that I’ve been to the country’s inner-city rehab hospitals, where the vast majority of in-patients are gunshot victims who look just like the dude in the ad, many shot as a result of gang affiliations, where they’re not allowed to be discharged in red or blue wheelchairs out of fear that such gang colors will simply get them shot again. So, as charming as a hip-hop disability-related ad may seem, clearly the advertiser has never been to an inner-city rehab to fully understand the demographic portrayed by Gangster Guy.

The fact is, I’m a 36-year-old dad, working a white-collar job by day and pontificating as a writer by night. I don’t have anything in common with old ladies eating fried chicken in adjustable beds or gangsters wearing unlaced Adidas – and I certainly don’t click on such ads.

Nevertheless, there’s still hope for me as a revenue-generating ad clicker online. If the advertisers stop stereotyping me as a surfer with a disability, and slip content on my screen that might tie into my true demographic – men’s business attire, parenting, reading, minivans, bikini models on water beds – then they might sucker me in after all.