The Doctor Was Right About Me: Why We Need To Stop Shutting Those Who Do Not "Defy Medical Odds" Out

I'm not sure if you have seen the article floating around social media about Ben Jackson, a young man born with spastic cerebral palsy who has become an accomplished wrestler and a student at Northhampton Community College. Ben was recently the subject of a Gatorade commercial entitled “Ben Jackson-Never Finished.” Click here Sure, you don't see a wrestler with cerebral palsy every day. But this article is not making me "feel good” as Huffington Post suggests. I am not saying his accomplishments are not impressive, but what gives me the heebie-jeebies is the way the media is choosing to tell Jackson’s story.

The headline reads “Man with Spastic Cerebral Palsy Who Wasn’t Expected To Walk Is Now An Accomplished Athlete.” The article proceeds to celebrate his learning to walk as a victory over doctors, who were "proved wrong” and within this statement it is insinuated that "beating the odds" by becoming ambulatory is in part due to the triumph of courage or special character traits. Sometimes doctors are wrong, and sometimes it feels good to do something they said was out of reach. But unfortunately in cases like this, learning to walk is used as a blue ribbon, as if those who learn to walk possess some strength of character that is lacking in those who never do. By equating the fact that Jackson can now wrestle and play basketball in the context of “drive and fearlessness”, it is implied that the brave and the strong defy the prediction that they will not walk, while those who do in fact develop just as the doctor predicted are rarely seen in the media, because their bodies and their lives are not paired with the virtues of motivation and courage in society. People who are expected not to walk… and, gasp, don’t, are instead used as a scare tactic for what "could have been” if not for this “relentless drive."

We, the “non-ambulatory” are used to represent the kind of life that everyone fears. The kind of life that the big bad doctor warned you about, that Huffington Post will not write about in a heartwarming manner because to them we represent struggle without the feel-good victory. I do not walk, and I daresay that I have lived a good and full life although I will never ride a bike or play basketball on foot. If a child learns to walk who was not supposed to walk, then that is excellent. But a similar child whose diagnosis follows the predicted trajectory can also lead an excellent life if society grants him or her equality and stops making “walking” and “success” synonyms in our mental dictionaries. The child who never learns to walk may not become an accomplished wrestler, but other accomplishments that are just as valuable are more than possible. If your physical circumstances concur with those that the doctor predicted, you are not a failure. Behind the glimmer of the fairytale story society has constructed around disability, so that the non-disabled can perceive us in a way that makes them comfortable, there are thousands of people for whom life has progressed physically, just as the doctor predicted. What the fairytale doesn't tell you is that they can still be happy with those wheelchairs and aides and nurses and expensive equipment that so many have been taught are the unfortunate outcomes.

Being more severely disabled can be inconvenient. When you drive a powerchair, and can't walk independently, transportation is a lot more limited and a staircase is a definite “no”, not a maybe. But my life is no more or less important than someone who defied his or her doctor's predictions. Unfortunately, articles like the Ben Jackson story do nothing to help people realize that. The article says that Jackson was not expected to walk, and that the doctors even suggested that his mom “let him die” because he would "be a burden" and too “much to deal with”. The article does a great job of showing that Jackson is not a burden, but unfortunately does so by calculating his value based on the fact that he learned to walk and play basketball. Furthermore, there is no reassuring paragraph that other children with CP who do not learn to walk and may need a lifetime of assistance are not burdens either. The take away seems to be, “Ben Jackson is not a burden, but if he had not walked, he would have been.” That should strike you as rather problematic. We need to stop presenting people who do things in spite of medical predictions as “the winners” among disabled children.

The insinuation seems to be that if he had not “overcome” these physical “limits” the doctor predicted, his value would suddenly be stripped away. Some people can do more physically than others. That has nothing to do with character or the value of a person’s contributions. Imagine how that could impact a young disabled person trying to develop a sense of pride in the most vulnerable years of life, if even the media figures with certain “commercially appealing” disabilities are touted as superior because of their less “bleak” lives. If we really want to diversify media representation the right way, all kinds of disabilities need to be represented rather than split according to their “feel-good value” in others' eyes. Rather than putting those who “beat” the odds in the winner’s circle while tucking the more severely disabled into news articles about economic impact, loss, and family-destroying stress, we need to show the world the honest and accurate truth that if things happen just as the doctor predicted, the world is not over.

The value of a person does not disappear when it becomes clear that physical milestones are not to be. Of course, one is allowed to be confused, scared, and even angry when “what could have been” does not happen. It takes time to restructure your identity when you do not have the “typical” child your baby books have been advertising. But life will be so much easier and happier if in time, you let go of what could have been and celebrate what “is”. This can’t happen if even in our own community, the more mildly affected who walk and play basketball like Ben Jackson are extolled as fearless, driven, and by insinuation, good, while those who find themselves with more severe conditions are essentially hidden from the world, and assumed to be the burden that everyone fears. Walking, talking, feeding oneself, and playing sports are not character traits. They do not come automatically packaged with success, drive, heroism, and determination.

 If the press wants to tell the story of someone who proved the doctors wrong, then that's great, but present it as a fact, as a part of the story instead of as a victory contrasted with those our culture has declared developmental losers. Ben Jackson could still have been driven, fearless, and strong even if those doctors had been right. To all those children who did indeed develop as the doctors predicted, you are not invisible, you are not disappointing, you are not weak. You just are. You are alive, and therefore, you have a story worth hearing.

What makes a person valuable? What makes a person worth reading about, having in our schools and workplaces? What determines who society has a place for and who is better off to die because of a “bleak outcome?" If our deciding factors are who can walk, or play sports, or mark some physical feat off a chart, then we have wandered deep into dangerous waters. I’m waiting for the commercial featuring a child for whom medical circumstances went as predicted is still celebrated, like all people should be, as a champion. When that happens, I will buy a lot of Gatorade.

[Hey, Doc! You were right. I never walked. My CP is as severe as you said. But that's OK, because you being "right" doesn't mean that my life lost its value. Please tell other parents that it's OK if you are "right" too about things like walking and talking, because you never said it had to mean an unhappy life. And if you once thought it did, I hope you see now that you got that part wrong. Thanks for helping me. I love you.]

Image description: At the top is my sister standing in front of my green stroller, hugging me. I am seated in the stroller. We both have blonde curls and big smiles. At the bottom: My sister and I as infants in blue and green high chairs wearing party hats.

I'm Not Going To Run You Over: Why Comparing My Chair To A Car Doesn't Help

It is fairly common for parents with curious young children to explain a wheelchair as "like a car". I understand the reflex to explain it this way; it is an easy analogy, especially for the masses of toddlers that appear to be obsessed with wheels of any kind. But to all parents out there tempted by this explanation, note that you are not doing me any favors by comparing my power wheelchair to a car. In case you’ve forgotten, cars are an age-old way to scare kids into being cautious. They represent danger to her young mind because society is constantly reminding kids that cars run them over, pop their balls that roll into the street, and are the main reason we are raised "to look both ways". Cars are also a great way to get around and a modern convenience, but as far as a little kid playing kickball on the lawn is concerned, they are the reason to hold mommy's hand crossing the avenue and an easy way to get hurt. Thus, you can gather that the wheelchair car association naturally could lead to a similar connotation of danger and make little children afraid that people using wheelchairs are the scary entities looking to roll over their toes.

Well-meaning parents don't make it easier to dispel the idea when rather than teaching their children to say hello and walk beside me on the street, they loudly encourage them to "get out of the way” before they get run over. In the same family of well-intentioned but ignorant comments you can find "she's going to run you over,” "watch your toes” and “Johnny… LOOK.OUT,” all said in a similarly loud, exaggerated “the boogie man is coming” kind of voice. You may not realize it, but scooping Johnny out of my way when I likely was not even near his little toes results in him seeing me as nothing more than some kind of threat, safely avoided by responsible behavior. It is extremely isolating when young people, who will someday be adults themselves, are essentially alerted about me, often from several feet away, much in the same manner that one would tell their child about a hazard or a particularly undesirable germ. Then in their very impressionable minds, people “like me” are not worth talking to or even approaching without fear and concern for their appendages.

What's more is that attitude relies on preconceived assumptions about my ability to operate my own wheelchair. To those who don't know, I don't use it to careen through town as a hobby. It is my primary mode of transportation. I operate it about sixteen hours a day, every day of the year, because for whatever reason, crawling to my school, my friends' houses, and the local businesses seems to be an unpopular idea. It is pretty insulting when people don't know me assume that by default way of getting around is haphazard, reckless, and most certainly going to amputate your child’s fingers and toes. I am a lifelong wheelie, and I don't want to hurt anybody, despite my very scary exterior… the “Frozen” themed “I like warm hugs!” button on my headrest is sure to haunt many childhood dreams.

So, no, my chair is not a car, and it’s not even much like a car. It is like my legs, and it is the reason I can live my life. This brings me to another flaw in the car analogy: cars, while extremely useful, are a convenience, and in some places, even a luxury. My chair is a lifeline and if it breaks, I would essentially be stuck either in bed or in a push chair that allows someone else to dictate where I go or if I go there at all. Remember that it is not to be treated with a sense of novelty, because it is so necessary that I regard it as an extension of my body. Yes, that means using it as a coat hanger, scratching post, or a lounger without my permission is probably not advisable. This is especially true if you are a sweaty, slightly inebriated middle- aged man looking to lounge on my handlebars at an otherwise enjoyable concert.

I love my chair very much; it is so “me” in so many ways. It carries souvenirs from my years at summer camp, buttons with slogans about anything and everything, buttons honoring my loved ones in heaven, and my backpack whose contents are ever-mysterious, and usually include a number of things I forgot existed. But unlike the idea that often accompanies the car comparison, I don't really think of it as "fun" to ride around. It is as natural to me as walking, so I fail to see the fascination. Although it is tempting, I assure you that very few people would be eager to tell me if “walking around on those feet is fun”. Nor would they find it very natural to have someone telling them how good they are at walking (wide eyes, exaggerated voice: WOW! You’re really good at walking. I mean really good. I could never!) While I take pride in driving my chair very well, I don't understand why people seem so surprised that I am not a blundering, incompetent fool at using my “legs”. Imagine if I assumed that you were going to stomp on me every time you walk by, and took great care to tell my young child to “WATCH OUT” for you, while failing to make it clear that you are even a person.

It especially fascinates and frustrates me when parents yell and have their children scatter when I am still 30 feet away as if it were part of their "family plan" for a natural disaster evacuation. I can see the PSA now: “See a wheelchair coming? Grab your kids! Walk, don’t run to a ‘safe spot’ chosen by your family. Be prepared! (Prepared, bright eyed children smile and flash a thumbs up, anxious to earn their wheelchair preparedness badge). I totally get it… it would be a bummer to get run over by a heavy power wheelchair, but it would also be unpleasant to get stepped on, stepped over, or trampled, all lovely things we can blame on feet. So, unless you want me to teach my future children to scatter and assume you are going to crush them every time you walk by on your feet, let's make a deal: if you see me coming, walk next to me and say hello. Assume competence, and remember that I don't like to hurt little children or anyone else. Do a better job than the random mother who allowed her child to scream about how I was going to run her over and say “that's better” when I passed them, instead of telling her to say hi when I tried to talk to her. My wheelchair is not a car, which means that all those old tired jokes, unsolicited “beep beeps” and inquiries about my license can be laid to rest. My chair is like my legs, so please don’t assume that I am racing every time I move. Sometimes I just want to be beside someone, and based on my observations about most legs out there, you ambulatory folk are definitely not racing every time you move… so why should I?

I don't mind showing your kid my chair at all, but I want them to know that it is part of my space, not to be poked, touched, prodded, kicked or jumped on. I don't want them to be afraid of it and in turn, be afraid of me. I just want them to respect it as my way of getting around, and be assured that I am much more interested in meeting them than running over their toes.

*Author's note: While I think of my chair as "my legs", you'll be interested to know that I also, in fact, have two literal legs. Kids, are your minds blown yet?

Lessons I Learned At The Empire State Games: Reflecting on Seventeen Amazing Competitions

Today I participated in my seventeenth Empire State Games for the Physically Challenged, and because I am now twenty- one years old, it was my last competition as an athlete. For those of you who do not know, this event, affectionately called the ESGs, is a series of athletic competitions for people of all levels with all types of physical disabilities. They include wheelchair races, walker races, and wheelchair basketball games. What makes it unique is that one need not be a trained or competitive adaptive athlete to take part; for many of us, it’s just about fun. But the important part is we are given the chance to compete, with people of similar physical abilities, a rarity for many of us, especially those who attend a mainstream school. The Games are about us, people with disabilities, who have both the right to win and the right to lose.

While the outcomes of the competitions do not matter at all, there is something beautiful in having the chance to lose in addition to the chance to win. It means we have been included in an authentic competition, rather than relegated to a contest where we either cannot play due to our disabilities or are given the stock patronizing speech that "everyone is a winner". Too often, when it comes to recreational activities for people with disabilities, this speech is given as if we need to be protected from the ordinary possibility of losing a race. Winning and losing is part of life, as a person with a disability can clearly understand, based on the societal obstacles presented to us on a daily basis. It helps us learn, to celebrate when we win, and, if we are taught correctly, to celebrate even when others win. So no, it doesn't matter if you win or you lose, but it sure feels good to have the chance to do either. When both options exist, it means you truly competed.

However, in the years that have passed since I ran my first race at the age of five, I have learned a lot of things far beyond the context of the competition. The races and their outcomes are but a small, small part of the sweet lessons I learned here. To look around, is to see people of so many different varieties, coming together, united by the disability experience. Here, we have shed the stereotype that being a member of this group must mean the end of the world. Be here for a minute, and it is extraordinarily clear that it is not the end of the world, but instead, an opportunity to experience a part of it that so many other people will never know or appreciate.

It is here that I have some of my earliest memories of being at peace with my body. I relished in the strange joy of seeing other people whose long, spindly fingers were always tensed, as if all the energy of the universe were constantly pulsing through them. Other people whose thumbs were tucked snugly between their middle and ring fingers. Other people whose legs shot out into spastic excitement when seeing a friend, or whose inner emotions were a secret only for a few moments, before being given away by an unruly arm or foot. I remember as a small child being so excited to see that other people "like me" were out there, and to be in a place where our quirks were something ordinary, or even something of which we could be proud. I still get that feeling sixteen years later. I am "OK” this way. The thousands of TV shows, magazines, plays, books, and posters that are yet to feature a person that looks like me cannot steal the value of who and what I am. My story is visible here, and the world, so often allowed to make it invisible, must look. The thing is, if they really look, they will not at all see what they have been taught to expect. They will not see people who want medals for existing, or people who can only see grief in that which they have been dealt. They will see people, whose circumstances are perhaps extraordinary to some, doing ordinary things. Being happy. Being proud. Being who they are, both in spite of, and because of, a disabled body marked by “otherness” in the eyes of society. That is what I learned in seventeen years of taking part, and I hope other people will continue to learn the same. As I crossed the finish line for the last time, my five-year-old self and every self along the way was alive in me again. When I looked out at the crowd today and saw hundreds of younger children, who hobbled with my familiar gait in tiny walkers and butterfly braces, my heart was warm. I was inspired. But not for the usual reasons. Not because I wanted to call them “inspirational” for doing what other kids have the chance to do by default. Not because a kid on a walker running a race is brave, or because I found the nearby clown accosting us with stickers to be very funny. But because I was smiling back at my younger self, telling them, and telling the child I once was, that they were going to be okay. That it was okay. That living disabled would never be easy, but that it could be good. That the vessels that carry their spirits are not broken, and that they should always be proud.

Next year, in “my retirement” from the Games, I hope to volunteer with the rest of my “geriatric” friends who have aged out, and happily give the magic to other kids, while we cackle about the steady decline of our aching joints and our hamstrings that probably resemble stretched out rubber bands, a dark comedy show all our own. But more than that I look forward to seeing the next generation find out who they are, laugh at the absurdities of the crowded track, scan the price tent for ironies like a Twister Board, and make a skit character of the seemingly legless stuffed bear with a cone on its head at the mini golf course. I look forward to seeing them grow into smart, funny, witty, and proud people, unafraid to be sculpted by life, in spite of and because of their disabilities.

To find out more about the Empire State Games for the Physically Challenged (Victory Challenge), see the following link:

www.nassaucountypcgames.com

Below is an essay I wrote in 11th grade, inspired by watching my shadow along the track. It still speaks to me today.

"Even my shadow is different. The small outline of my figure perches on the silhouette of my six-wheeled ride, moving in a slow, crooked, asymmetrical dance. Moving through life this way is indescribably natural. With one slightly twisted hand resting on a well-loved joystick, I navigate my vessel from my own vantage point, somewhere below the world’s eyes and above its sneakers. This is my perspective, a window through which the colors of a vibrant culture glimmer. At times it is difficult for others to see the light that shines through my window everyday, difficult for them to understand what satisfaction could lie in an existence that is on the surface marked by the things society calls abnormal. I see these things as just ordinary, because for me, quite simply, that is what they are.

I am so much more than my disability. I am deep in my thoughts and rich in my desires, so many of which are shared, so many of which draw me into the essence of what it is to be human. But the elements of me that venture past “normal” matter and they always will. I love the soft buzz and click of my twenty-four volt battery; on a busy street where the sounds of creation converge, I know that I fit, that the rhythm inside of me is strong and rare and worthy. 

It is when I watch my shadow, untamed and free along the sunlit earth that I am most aware of beauty. With a variety that places us in the company of butterflies, we are brilliant and glorious and essential to each other. It is the light shared between us that allows our shadows to dance."

Help Is Not a Dirty Word: Constructing Independence As Something Other Than "Never Depending on Anyone"

Society tells us from the time we are young that the best disabled people do not depend on anyone. "Being raised to not depend on anyone" is a societal hallmark of a disabled person that has “overcome” according to the standards of success. We are declared "successful" in the eyes of society when we don't need help anymore or we need the least help possible. While well intentioned, this logic is damaging and twisted. We need to change the way we look at disabilities and the way we treat the idea of needing help. While it is certainly a good thing to do as much as one possibly can without assistance, we have not accomplished anything as a society seeking to empower others by shaming those who do in fact need some help. The fact is, with or without a disability, everyone needs help sometimes and everyone, yes, all of us, depend on someone for something. There is no shame in that because it is part of the human experience to support each other. It is true that I still need a lot of help physically, from transferring out of my wheelchair to something as simple as using the bathroom. But to say I have tried less or succeeded less because I have not managed to stop needing help with these tasks does not mean I have failed in my efforts to be the best person I can be.

Why is it that we have created an image of the powerful and victorious disabled person as one who has never needed or no longer needs personal care assistance? The fact is that no amount of striving, cheery smiles, or superior moral character will change the fact that some of us will always need a personal care assistant, a nurse, or maybe just an extra set of hands to be there in order for us to survive. It's time to create a narrative where empowerment and assistance can peacefully coexist rather than one meaning the absence of the other. Instead of systems that push for the least number of care hours, the fewest pieces of equipment, and the fewest number of people with a home health aide as a marker of success, we need to start building a world where those who can live without physical assistance do so, and those who cannot, instead of being held to an unrealistic standard that does not reflect their reality, are taught that needing help is nothing shameful.

Those who do need assistance, instead of being told that they would be more successful if they were to join a group of people who do not need help, should be taught to manage their care and services in a way that empowers them and gives them the ability to make their own choices. There is also the reality that a black and white view of independence as “doing everything on your own” may lead to a quality of life that is more exhausting and more dangerous than it needs to be. Society gives us a sticker if we do everything on our own. In the media, "the good cripple" never has a personal assistant in sight, and gets dressed, bathed, and ready for school all on his own, even if doing so takes away every iota of his energy. But is the sticker really meaningful if this so-called “independence” means taking six hours to get dressed, being drenched in sweat soon after you wake up, and risking a fall every morning because society says doing it on your own is the only way to earn the right to say you tried your best?

The fact is, it is important to do as much as you can on your own, but not at the expense of your health and safety. We cannot put those who "do it all on their own” on a pedestal and shame those who can't, based on the false idea that all people can be measured using the same test. Independence does not look the same for everyone, nor should it. We should be teaching those who grow up disabled and those who become disabled later in life to set goals according to their individual situations, because life is not as simple as the need for assistance appearing and disappearing based on how hard we try.

Those who continue to need significant amounts of physical care do not need it because of a lack of effort or the triumph of laziness. They need it because it is appropriate for their situation. While it is nobody's dream to depend on someone else for butt-wiping duty, accepting the help does not mean the end of agency and power. In fact, if such help allows one to be safer, more efficient, and healthier, accepting it does not mean surrendering your power. It means claiming it. And to those who think not needing help with anything is the mark of being “raised right” with a disability, I encourage you to consider the potential this idea has to demean others. Just because I need help taking a shower or getting out of my bed, I assure you that my mother did not raise me with any less care than the other mothers around me. I was taught that it is okay to ask for help as long as you have tried your best. I was taught that the inability to tie my shoe does not stain my character or indicate that I have “given up” sooner than the other people with disabilities. I have chosen to proceed in life pouring my energy into those things that are realistic to do "on my own” and to be at peace with those tasks that require the help of another person. I refuse to be classified as a failure of courage or character for recognizing my needs. I refuse to risk breaking my arm getting out of bed because trying to do so "without help" and falling is seen as a superior display of empowerment compared to helping others learn how to help me.

We’ve all seen the popular cartoon featuring a monkey, a penguin, an elephant, a fish, and a dog, all of whom are cheerily informed that “for a fair selection, everybody has to take the same exam: please climb that tree.” This cartoon is most frequently used to highlight the absurdities of making sweeping generalizations about what qualifies as ability in our education system. But the same cartoon very well explains the unfair standard around which society constructs its idea of what it means to be "independent". To expect the same from the monkey and the goldfish would be preposterous, because climbing a tree is a much more difficult task for a goldfish.  Certainly we cannot declare the fish to be a slacker or an individual of lower moral character than the monkey because climbing the tree on his own without proper accommodation would be impossible. We would never think of insinuating that the fish's mother had not raised him to try hard enough because he cannot effortlessly scale the tree on his own.

Now imagine that climbing that tree is something more every day, like using the bathroom or putting on a T-shirt. Every person with a disability cannot be held to the same expectations in order to be declared worthy of praise. If a child who can put on his own T-shirt is treated as more successful, and by insinuation, more virtuous and driven than one who needs help, but directs his assistant with clarity and skill, than we have treated these two children no better than the monkey and the goldfish. Asking for help those not mean the death of independence. You can still be an independent person while accepting the assistance of others. Some of my closest friends need help eating, bathing, dressing, and transferring. I myself need help with many of these things. But I still regard us as independent people because we take control of our lives in our own way.

 In fact one could argue, even more so that others… Because we have to teach people exactly how to help us and have to think deeply about what is involved in tiny actions that most take for granted. We are forced to be creative and innovative when the world we live in seems surprised at our presence. We are forced to develop a trust that most people will never experience, to know ourselves right down to how much toothpaste we want on our toothbrushes, and to realize that we all need each other much sooner than most will be blessed with this realization. It is commonly assumed that we need one another's help at the beginning of life and at the end. But the truth is, we need it in the middle too, regardless of if or not we have a disability. Some of us just need it more visibly than others.

Help is not a dirty word. It does not mean you have given up, failed, or proven to be anything less than amazing. It means that you are brave enough to tell others how silly it is to ask a fish to climb a tree.

[Image shows a line of animals, a monkey, a penguin, an elephant, a fish and a dog. A thin man with a suit and a mustache sits at a desk, and a speech bubble reads: FOR A FAIR SELECTION, EVERYBODY HAS TO TAKE THE SAME EXAM-PLEASE CLIMB THAT TREE. The animals are in line on the grass in front of a large tree. Caption reads: OUR EDUCATION SYSTEM].