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Tuesday, March 25, 2014

CP Awareness Day and The Cure We Should Really Be Seeking


Today is National Cerebral Palsy Awareness Day. I am supposed to be wearing green to support my people, but ironically enough, I am wearing red. Despite wearing the wrong color today, I think my signature palsy hands are a good enough indicator that I am celebrating today, seeing as one of them is nearly always stuck in the air like some kind of celebratory flag. Today, your social media newsfeed will probably be exploding with encouragement to “wear green- and stand up for a cure!” or a similar message accompanied by a smiling child “fighting this ‘disease’”. Let me be clear about something. Today, I need a cure. I need a cure, but it’s not the one that you think. Cerebral palsy has been part of me for my whole life. It’s impossible to separate us, because so much of the person I am has been colored by my disability. I know that it will continue to shape me as I grow older. So, no, please don’t spend today crusading for a cure for my CP. Spend today crusading for research and information on a topic that is overlooked and underfunded… the eradication of pity.
Pity has made certain people second-class citizens. Pity has made beautiful children who look different think they are ugly. It has deceived a society into thinking that acceptance applies to some and not others. It has allowed those who do not know our truth to call our lives not worth living. Pity is completely curable, but it relies on a willingness to invest in its end. We must give people with disabilities meaningful work and education. We must teach society that access is a right and not a privilege. We must bring people with disabilities onto the big screen and into our books in ways that lift us up, not make us into curious objects designed to accompany the crescendo of a slow, maudlin song. If we did these things, cerebral palsy would not scare society so much, and so many people would realize that they were fighting the wrong battle. They would realize that the enemy on which they should focus their fury is not cerebral palsy, but instead the inequality and stigma automatically attached to those who have it.
Today, on March 25, 2014, I will hope for the same thing I hope for everyday. I will hope that one day, people will welcome a child with cerebral palsy with the same love and joy given to any new arrival. I will hope for schools, workplaces, shopping centers, parks, and hospitals that genuinely welcome us out of kinship rather than legal obligation. I will hope that the world will see me as someone with a good life, in spite of and because of the disability that literally and figuratively sculpted my brain twenty- one years ago.
Don’t get me wrong. I don’t enjoy having epic spasms or becoming a palsied ice sculpture at the first indicator of a breeze. If there are ways to mitigate the more painful physical aspects of CP, I will welcome them with arms open as wide as my range of motion will allow. But don’t think the desire to treat a few nuisance aspects of CP means that I wish to “get rid” of CP itself. That would require a restructured identity, and I am at peace with my identity as it is.
If I did not have CP, people have said over the years, I would still be the same person. However well-intentioned that thought is, it’s just not true. I would lose the way my hand pops up like a creeping relative in every photo. I would lose the way my legs kick out when I’m so happy to see a friend, and the tighter than tight way I wrap people in a hug. I would lose the joy of eating soup by straw to spare my clothes, and the near-guarantee that someone I know will be seated in the same section of a concert hall. These may seem like quirks to you, better off gone, but quirks are those things that make us who we are. If we lose our quirks, we lose ourselves, and that would be a devastating loss.
Today, I ask you to be brave. Seek a new cure. A cure for pity. It’s a cure that’s so easy to find if we work together. It’s a cure that doesn’t lie in the hands of the world’s most brilliant scientists. It doesn’t grow in a petri dish. It grows in homes, schools, churches, and playgrounds… in little acts of real, honest inclusion. It grows in each of us, and it has the potential to be the advancement of our generation. How amazing it would be to discover it… as scientists, as teachers, as moms, as dads, as brothers, as sisters, as nurses, as doctors, spouses, scholars, and friends… as people. Wear green today, and seek this cure with me. But you don’t have to stand for it, sitting is cool too.
 If you're not too busy celebrating with a game of Limpo or Startle the Tail Off The Donkey, check out www. curepity.org to see an amazing campaign that has started the fight.

Friday, March 7, 2014

I Am Not A Scare Tactic: Talking Back to the "Don't Drive Stupid" Campaign


The media is at it again. Pretty pictures are pretty pictures, right? Wrong. They are a reflection of what the public really thinks and a reflection of how those who do not yet know what to think about a topic are supposed to think. This time, the wheelchair user is being used as an object of pity again. The media is manipulating society's fear of disability and using it to cast those who have disabilities into a place of ultimate shame. For rehabilitation class, I was assigned to interpret any media image about people with disabilities. It sounds easy and it sounds like something I would do instead of watching Netflix or eating bonbons. But when the assignment was in my lap, I was having a lot of trouble making up my mind, knowing that there were just so many options. When I asked for help on Facebook identifying a good bad or ugly portrayal, my sister dug a gem from the murky depths of cyberspace. And by a gem, I mean one of the worst portrayals I have ever seen. It's been a while since a media image of a person with a disability made me viscerally angry. And then the Internet gives you something to write about.
The infamous picture is from a Utah teen safe driving campaign called Don’t Drive Stupid. It encourages teens to avoid risky behaviors such as drinking and driving, drugged driving, and texting and driving. The message is good, but the way it was delivered should make its creators incredibly ashamed. The poster depicts a boy seated in a manual wheelchair with downcast eyes and the caption reads:  Drive stupid and score some kickin’ new wheels. Nothing’s cooler than the day you get your driver’s license. But as soon as you start driving stupid, it’s not so call anymore. Texting, using your Ipod, racing, they all fall under the category of stupid. And dangerous. So before you get behind the wheel and try to prove how cool your are, here's a little harsh reality: Nothing kills more Utah teens than auto crashes. Not fazed? Okay, how does the thought of spending the rest of your life in a wheelchair grab you? Look, every year far too many Utah teens go from cool to crippled in the blink of an eye. So if you're one of those drivers who think they have something to prove, you can start shopping for your wheelchair now. And hey, if you think that's harsh, wait until the day you roll it into school."  
Take a moment to process that. Are you banging your head against the desk yet? Let me be clear. I am not advocating for risky behaviors and I am a big fan of educating people about driving safely. What I have a problem with is the absurd idea that being disabled is the worst that could happen to a person. If you drive dangerously, you could DIE. You could KILL SOMEONE. Those should be the harsh realities. When you use lives like mine as a scare tactic, you deepen the divide between us. You prey on people’s fear of what it would be like to be me, and surround people who use wheelchairs with shame. You prey upon teens’ vulnerabilities, their desires to be cool. The subtext is this. You want to fit in. You want to be cool, but you won’t be, if you’re in a wheelchair. The message suggests that when you roll into school, the natural consequence is that you will be bullied and ostracized. And if it’s the natural consequence, then the message between the lines must be that we get what we deserve.
Disability or not, regardless of its cause, nobody deserves to be isolated, bullied, or treated as less than. The inclusion of life in a wheelchair as the doomsday scenario, and the omission of death as the ultimate fear factor leave the reader with a basic perception that disability is worse than death. When that perception is allowed to permeate our culture, part of my spirit dies. I am disabled, and I have challenges. But I refuse to see my life as a tragedy.  Most of my challenges arise from the callous manner with which my life is dismissed, devalued, and belittled by others. I am alive now, and if you someday become like me, the world will go on. You will find a way to embrace your new normal. Not everyone will be kind to you or know how to see you with an open mind. But some people will be so kind, it will bring tears to your eyes. And it will become so clear who deserves to have a place in your heart.
If you based your worldview on this ad, you would also conclude that one cannot be “cool” and “crippled” at the same time. I’ll let you in on a little secret. You can be both. A disability does not deplete your ability to be liked and loved. A cool person is a cool person. Period. End of story.
So, teens, kids, adults, seniors, don’t drive stupid. Be safe, but don’t be safe because you’re afraid to be like me. Don’t be safe because you think the world will crumble if you roll into school in a wheelchair. Be safe because you’re not dead yet, and the world needs you. Be safe because there is no name for a mother who has lost her child, only a great emptiness where words fail. Be safe because you’re ALIVE now with so much left to do. Be safe because I love you, more than you know.



Image description: The poster depicts a boy seated in a manual wheelchair with downcast eyes and the caption reads:  Drive stupid and score some kickin’ new wheels. Nothing’s cooler than the day you get your driver’s license. But as soon as you start driving stupid, it’s not so call anymore. Texting, using your Ipod, racing, they all fall under the category of stupid. And dangerous. So before you get behind the wheel and try to prove how cool your are, here's a little harsh reality: Nothing kills more Utah teens than auto crashes. Not fazed? Okay, how does the thought of spending the rest of your life in a wheelchair grab you? Look, every year far too many Utah teens go from cool to crippled in the blink of an eye. So if you're one of those drivers who think they have something to prove, you can start shopping for your wheelchair now. And hey, if you think that's harsh, wait until the day you roll it into school."  

Sunday, March 2, 2014

"Winning" the Right to Mobility: NMEDA, Mobility Awareness Month, and What We Should Really Be Doing About Accessible Transportation


As you may have noticed on various social media outlets, the National Mobility Equipment Dealers Association kicked off its campaign this week in anticipation of National Mobility Awareness Month in May. Annually, NMEDA gives away three customized wheelchair accessible vans to deserving individuals they have deemed “local heroes”. Contestants must submit their stories and share them to secure the largest number of votes and win the vans. While it’s exciting that three less people will be without accessible vans, the notion that this “contest” must exist breaks my heart, and it should break yours.
The idea that adequate transportation remains such a dream for millions of disabled people that it must be battled over in a contest makes me want to cry. You may be thinking to yourself that lots of non-disabled people don’t have cars either. That is true. But remember that the transportation struggles are compounded for people with disabilities, as those who cannot afford an accessible car are too often denied access to public transit as well, simply because many buses, trains, and taxis remain unable to accommodate wheelchairs, and many of the powers that be have little interest in changing that.
The ever popular “get a ride with a friend” is frequently not an option either, unless you feel like being heaved into the front seat by a friend with lifting skills and dragging along a folding chair that you can’t move on your own unless you aspire to ride around in little circles all day. You can guess that this option is less than enchanting, given that the lifting process often causes moans of pain that sound like they came from a dying yeti.
Paratransit, or door- to- door bus service for people with disabilities may seem like a great solution… that is, if you’ve never experienced the vortex that is paratransit. In addition to costing nearly $4.00 per way, paratransit is kind of like paying to get a ride with a friend who never passed their road test, or forgot to pick you up because he was distracted by the glowing beacon of a nearby Taco Bell. When one calls to complain about a late or missing bus, the matter-of-fact automated voice will routinely ask if the time window has “expired”, as though the thirty minutes the bus had to come to the house just passively went bad like old leftovers in the fridge.
The fact is, time windows do not just casually “expire”. They end… because underneath all the euphemisms, the driver is late. Again. And eventually if you’re lucky, a zoned out driver will appear as if forty minutes late is just part of the experience. And if “the experience” people to miss work, internships, interviews, or other things that happen when one gets off the couch, the dispatcher is usually unsympathetic.
 I could go on all day about the ills of paratransit, but I return to my original point. The transportation situation is complex for people with disabilities. Still, in 2014, people are left to scan confusing maps for platforms deemed accessible, and a wheelchair accessible taxi is about as common as a unicorn. Fifty percent of the taxis will be accessible by 2020 according to a recent agreement, but not before former Mayor Michael Bloomberg claimed that the greater distance between driver and passenger would result in fewer tips, and that the "the suspension is a lot worse and its harder to get up and pay the cab driver and get in and out and that sort of thing". The continued prevalence of arguments like these is just laughable and no one seems to be pointing out that inaccessible cabs, in fact, result in fewer tips because millions of disabled people, who… gasp, have MONEY, are unable to tip the driver if they can’t access the cab in the first place.
Essentially, all things considered, an accessible van is the only option for many people if they don’t want to spend countless days sitting at home. The choices are few in this market, and the prices astronomical. A non-disabled person has a choice to buy a pricy car with all the bells and whistles, or an old junker that smells and has roll down windows. The only choice for disabled buyers who must remain in wheelchairs is an expensive van with expensive modifications. In our world, a fully adapted van can be close to $40,000 dollars, and the closest thing to an accessible junker is maybe one with manual doors. You can guess how these conditions leave too many people unable to go anywhere, deprived of the opportunity to contribute their talents to society. You can guess how these conditions may cause too many to compete, essentially for their right to participate in the world, in a contest that is “liked”, “tweeted”, shared, emailed and texted to anyone and everyone. The intentions of NMEDA are wonderful, but let us not allow intentions to mask the underlying heartache that for the three people who win those vans in May, there are thousands of others who will remain stranded, thinking “maybe next year”.
Then, of course, there is the “local hero” aspect, one that bothers me the most. Contestants are required to submit their stories about why they are a “local hero” who is overcoming mobility challenges. Again, the intention is good. Promoting awareness is good. But we cannot ignore the conversation about privilege that should follow. We are required to “overcome mobility challenges” in large part because the systems around us remain resistant to including us. Because our options are limited due to prohibitive costs that ensue once the word disability is mentioned. As usual, people with disabilities must “inspire” and “overcome” to get their rights. They must assume the role of a hero, whose worthiness to participate in the world around them is determined by their ability to make the World Wide Web feel warm and fuzzy inside. Maybe warm and fuzzy enough that no one will have to confront the inequities that led to the “contest”.
People should not have to be “heroes” to get what they need. They should not have to inspire anyone to make up for the fact that they cannot even get on the (inaccessible) bus and are seeking an alternative to being stuck in the house. But compulsory heroism still seems to be a requirement oftentimes, and the expectation seems to be that someone will inspire his or her way to equality. I am glad that three people will be more mobile after the contest ends, but instead of voting on who “deserves” the distinction, we should be voting for legislation that makes accessible transportation a priority, not an afterthought or a half- granted privilege. Two hundred thirty one accessible taxis in a city of millions of people are just not good enough.
We live in a time of progress, when people no longer have to sit in the back of the bus because of who they are. But so many people with disabilities still cannot even get on it because of who they are. Meanwhile, until we can have meaningful conversations about transportation equity, I would propose that rather than leave the winners to be determined by their perceived inspiration value, all those eligible should just have their names put in a hat, with three chosen at random. That way, no one can declare the disabled student that dreams of driving herself to school more valuable than the woman who dreams of adequate transportation for her disabled children, or her more valuable than a teenager that wants to be able to meet up with her friends.
I cannot stress enough that when you are clicking around on social media, scrolling through the stories of contest hopefuls, you should be thinking deeply about justice and injustice. You should be envisioning a day when opportunities are not granted to only those who can get the most votes, and remember that there are 560,000 Americans with disabilities today who never leave home because they have no transportation. No one should have to be a superhero to change that.

Works Consulted
American Association of People with Disabilities (2014). Equity in
transportation for people with disabilities. Retrieved from
W. Peace (October 22, 2011). Mayor Bloomberg rails against accessible
taxis (blog post). Retrieved from