Saturday, August 30, 2014

The User's Guide To Being An Inclusive Educator

The User’s Guide To Being An Inclusive Educator

As a student with severe cerebral palsy, I have a lifetime of experience learning the ins and outs of navigating a mainstream school. I’ve been mainstreamed since nursery school, and now as a senior in college, I have met a full spectrum of different teachers, and I’ve had a lot of time to consider the little things that have separated the teachers who practice mandated inclusion from those who go out of their way to be extra inclusive and understand the experience of students with disabilities. Obviously, everyone’s situation is a little different, and I’m speaking from my perspective as a woman with cerebral palsy. But I hope these ideas will be able to guide many people with disabilities and their teachers in creating an environment that goes beyond basic access.
Be mindful that many physical disabilities affect other parts of the body besides the legs.
Although my wheelchair is the most obvious indicator of my disability, it affects all four limbs, and in a lot of ways, the upper limb deficits present more challenges in the classroom. In summary: FINE MOTOR SKILLS. Cutting, tying, crafting, and other activities that others take for granted are extremely difficult, if not impossible for me. Avoid class activities that are high motor intensity whenever possible, as they are frustrating, isolating, and exhausting for people with certain kinds of disabilities. Furthermore, they are not an accurate measure of classroom success for people with motor impairments. For the sake of letting all students work together, try to steer clear of these assignments. If they are definitely necessary, create an alternative motor friendly assignment for the disabled student.
Group projects can be devil if they are not created with access in mind.
 Group projects always made me break into a cold sweat. The scenario usually looked something like this: teacher announces a “pick your own group” group project. All the students bolt out of their seats, stepping over me, and by the time I move, all the groups are already formed. To smooth things out for people with mobility issues, I would suggest the instructor randomly assign groups. This will also prevent exclusion and frustration for all students, as “pick your own group” scenarios are also hell for people who may struggle on the social totem pole.
Outside of the classroom activities may pose extra inconvenience for people with severe disabilities. Either avoid them or be flexible with times.
If an outside of the classroom activity at a different time/place is absolutely necessary, this should be obvious, but just to reiterate: make sure the location is accessible. I have a very complicated schedule with my personal assistants  (caretakers), so it is not easy for me to go places for school outside of my regular schedule. If something outside of the ordinary is necessary, provide lots of notice so people with disabilities can have plenty of time to arrange PAs and transportation (some of us can’t drive, rely on public transit or our family vans, which can’t be set up at the drop of the hat.)
For long class activities, build in breaks.
My disability causes muscle fatigue, and it takes me a bunch more energy to do regular tasks, like using my hands, sitting up, and writing. Many people with disabilities budget energy differently, and marathon activities drain us. If breaks are naturally built into the class, it’s very helpful to people with fatigue issues without isolating them from the rest of the class. Furthermore, it takes people with some disabilities longer to go to the bathroom, so breaks are appreciated.
Keep in mind that not everyone can jet off to the bathroom and be back in  two minutes.
Things take us longer, so going to the bathroom may be more of an event for us than a non-disabled person. Some of us need personal care assistance in the bathroom, which tacks on extra time as well. Be patient and aware of this. Also keep in mind that some people with CP have muscle issues, and our bladders like to play tricks on us. Translation: not so great at holding it, so if I need to pee at an inconvenient time, please be understanding unless you are willing to clean up my pee. Having a classroom near an accessible bathroom is also a plus.
Visual perceptual issues are a thing.
It may not be obvious, but visual perception difficulties are a big part of CP, and some other disabilities. Graphs, overlapping shapes, small print, or “imagine what this would look like if it was rotated” things make me all fuzzy. This doesn’t mean I’m lazy or not smart, it means my eyes need to work harder to do simple things. Offer graphing assistance (or an alternative to graphs)! Be creative about other ways to evaluate a student. Or for example… read the points to the student and ask him or her to comment on the trend.
If the student has an aide, talk to the student, not the aide.
Unless otherwise noted, an aide is supposed to be a neutral extension of the student, basically acting like one’s limbs. If you have a question about the student, ask him or her. Recognize the student as a separate entity, and allow him/her to function as independently as possible. Aide no-nos: Asking where the aide is if he/she leaves for two seconds, grouping the student and the aide like one person.
The one to one aide is not the answer to all access issues.
If a student is struggling with a task in class, don’t assume that poof… the answer is a 1:1 aide. Having a full time aide can be restrictive to social development and learning particular life skills, even if the aide is an awesome person. Think first. How can the class support the person as a group so that he/she can possibly function without a 1:1? Making the whole community part of the solution rather than just sticking an aide on the person benefits everyone. For example, in high school, peers took turns moving my desks so I could be in the classroom sans aide. For lab groups, rather than automatically summoning an aide, my teachers let other members do the motor intensive tasks, while I did the calculations.
If I do have an aide, you can still help me in small ways.
Just because a student has an aide doesn’t make his/her peers immune from doing a helpful deed. You can still hold the door, pick up a pencil, or turn a page. These things are helpful things you should do for anyone as a human being, regardless of disability. Good deeds don’t require special training!
Make sure your field trips are accessible.
If you’re going to do a field trip, make sure it is accessible and that all students are made to feel welcome, especially if it’s for course credit. If you need guidance, ask. Don’t make students with disabilities feel like a burden. A teacher in my past, who shall remain nameless, once told me I couldn’t go on the trip “because it would just be too much work”. Hint hint: That’s illegal.
If a student with a disability is late, don’t assume it’s for lack of effort.
People with disabilities can be slackers like everyone else but don’t make any assumptions if we run late. Maybe our PAs were late, maybe our buses were late, maybe we really had to pee. Maybe a tire fell off the wheelchair on the way to class. Yes. It has happened. And in spite of photo proof, I STILL had to get a note from my case manager.
We know ourselves. If we can’t do something because of our disabilities, it’s not a simple matter of trying harder.
Respect our knowledge of our own needs, and remember that no one is overjoyed to tell you that they cannot write for long periods of time or fold a piece of paper. A (nameless) teacher once said in front of the whole class that I wasn’t writing my own notes because I didn’t try. Ignorant and insulting to say the least. If you do have a concern, ask in private.
Don’t tell us what to call ourselves.
Even if you read that “special needs” is today’s preferred term in a magazine, it doesn’t mean it’s true. Everyone has a different favorite. I personally prefer disabled, but opinions vary.
Don’t treat accommodations like unfair advantages.
Unfortunately, difficult teachers in the past have been difficult or flat out non-compliant with accommodations because they perceive them as unfair. Documented accommodations are the law. Period. And an accommodation does not give an advantage, it levels the playing field. For example, giving me a copy of notes doesn’t give me an advantage, it compensates for the fact that it’s hard for me to keep up with writing. If I didn’t have the notes, I would be at a disadvantage, because other people can write easily.
Electronic notes from the teacher are awesome.
I think this is true for all students, not just those with disabilities, because it allows them to listen rather than focus on copying notes. Also, if all students get notes, the student with a disability is not separated as a case of “special needs”. It also avoids the need to deal with unreliable student notetakers, crappy carbon paper, and other unpleasant things. Some teachers worry that giving notes will encourage goofing off, but I have found it allows for discussion rather than a race to write notes.
Make your media accessible to all.
Use captions on videos, not only for visually impaired folks, but for all people who may have trouble seeing the board. Describe images with a caption whenever you can.
Make your Powerpoints accessible
Use large font, simple language, and an easy to read format. Describe images. Organize info in bullets and avoid loud noises, sudden motions, and flashing lights. Avoid fancy fonts.
If you really don’t want to give out notes, allow a student notetaker to type notes in class and email them to the disabled student.
This eliminates the need for crappy carbon paper, a true artifact from the time of the dinosaurs, and makes it possible to retrieve and read notes easily.
Familiarize yourself with disability resources and the disability services staff.
As classrooms become more diverse, more students with disabilities will be in the classroom and they deserve a competent staff. We have dealt with our fair share of cluelessness, and having someone who can help and offer support is invaluable. It is so comforting to have someone around who has an idea about our lives after many years of “I don’t knows”. If you can point someone to a helpful service, support, or person it may change a life.
If you’re going to teach diversity, include disability in the talk.
Diversity is a buzzword in education, and despite the popularity of diversity seminars, disability is usually treated like the ugly stepsister of social justice. We’re here too. Learn about our lives! Kids deserve to recognize Ed Roberts as readily as Martin Luther King Jr. Talking about disability as diversity rather than a problem paves the way for a more accepting world. Go beyond the Welcome poster with the stick figure wheelchair kid. I dare you.
If a wheelchair- using student has a different type of desk, don’t isolate his or her desk from others.
I always stayed in my wheelchair and used a table rather than a desk with the chair attached. Sometimes, a teacher unintentionally placed my desk eons away from the others, creating a contradictory inclusion island. In the interest of being in the same universe as others, please place it near the others, with plenty of space to move.  Otherwise, it’s like “HOW’S THE WEATHER OVER THERE?”
Don’t use the wheelchair, accessible desk, or other piece of equipment to store things.
I can’t tell you how many times I arrived in my classroom to find a huge stack of papers or other assorted crap all over my desk. A person sits here. Respect that.
Avoid a patronizing tone or treating a disabled student as younger than their age.
Do I need to explain? I hope not.
If you are having an event with food, make sure students with disabilities can access it.
Too many times, I got trampled over, and when the dust settled, the cupcakes were gone. Offer help getting food or make it easy to reach. If you have a disabled student, offer to help with cutting the food, quietly, not as a loud announcement that creates unnecessary attention. Bring straws. Some people with disabilities need them to drink from a cup.
Avoid Intentional or Unintentional Ableist Comments
Ableism= prejudice or discrimination on the basis of disability
There are the obvious ones. Don’t use “retarded” as an insult. Don’t mock people with disabilities. Then, there are the subtle ones. I was recently in a class, and the activity was a team exercise in which one person had to tie a shoelace blindfolded, and the other had to instruct. I could not do either, as I am unable to tie shoes and don’t have the motor planning skills to dictate a physical act I’ve never done. Throughout the activity, the instructor made repeated comments about “how everyone can tie a shoe!” while condescendingly saying that this should be easy unless we wear Velcro shoes. We were then encouraged to “pretend we were 6 and couldn’t tie shoes!” First of all, sweeping statements with “everyone” are usually dangerous. Secondly, the comments infantilize people with motor deficits. All people come from different places, and may struggle with things you know nothing about. Think before you speak.
When considering safety procedures, think about students with disabilities.
When our schoolmates get directions on how to escape a flaming building, we’d like to be clued in too. A vague “we’ll find a way” just causes me to picture myself praying fervently as the desks go up in flames. Putting s’more supplies in the drawer and saying a Hail Mary won’t cut it. If you need guidance, consult disability services & the student.
            Don’t be paranoid.
It might be new to have a student with a disability, but don’t be over the top nervous. We’re not made of glass.
            Trite Wheelchair Jokes Get Old Really Quickly
If I had a dollar for every “hey speedy”, “are you racing?” or awkward “beep beep” from over the years, I’d be rich. I love disability humor, but I could do without cheesy wheelchair jokes. Keep it clever & tasteful if you are going to joke. PS: I am not “racing” every time I roll beside a friend. Sometimes, I just want to take a stroll.
            Be Aware Of Testing Accommodation Procedures
Some students need their test sent to the testing accommodation center. Please do it in a timely manner and make sure the paper does not get lost. There’s nothing worse than a test you worked hard on getting lost in the Bermuda Triangle. Try to grade the tests from the testing accommodation group as quickly as the others. It was always a let down to hear: “We graded ALL the tests! Except yours!”
            Alternative Assignment Options for Students with Disabilities Can Be Helpful
            If a project involves a lot of motor tasks, drawing, cutting, or craftiness, it’s probably not a good way to evaluate a person with CP. Offer an assignment of equal difficulty using a different measure of achievement. I can say from experience that forcing me to make a papier maché jellyfish or draw pictures just created sweat, tears, and a lot of work for my parents, who often had to carry out fine motor tasks while I dictated. Please, for the sake of my mom and I not throwing poster paper and whimsical decorative stickers at one another, create something I can do without help. I assure you it will be a much better measure of my skills.

Offer Help, But Don’t Force It
An offer for help is always welcome, but if I say “no,” respect the answer. Help without consent is the opposite of helpful.
            Don’t Lower Your Expectations for Us Just Because We Have A Disability
Low expectations are the enemy and the source of a great deal of ableism in the world. We have disabilities, but we are bright and driven. We want work that is fair and accessible, but equally challenging. Expect greatness from us as you would with any other student.
            Remember That Having a Disability Can Be Exhausting.
I love my life, but having CP is tiring. Between coaxing my rebellious muscles into action, managing my PAs, setting up my buses, and doing regular everyday stuff, I have a lot to juggle. I don’t want pity, just understanding, and the awareness that I use energy much differently than others. According to the National Institute of Neurological Disorders & Stroke, CPers use 5x the amount of energy than those without CP doing tasks such as moving about. If I look a little slouchy or glazed over, no disrespect intended. I’m just tired, so think before you comment that I must be staying up too late. In fact, because I have a PA, I can tell you my bedtime from now to December. No joke.
            All People With Disabilities Are Not Interchangeable.
Just because you had so & so in a wheelchair five years ago doesn’t mean everything will apply to the next student. Get to know us. And even though it will make me laugh, try not to call me by the name of the other wheelie in the school. We don’t all look alike!

            Meet the Startle Reflex
A heightened startle reflex or a moro reflex is common in cerebral palsy, in response to lights, sounds, and sudden motions, even smells. Startling may look funny, but it can actually lead to painful spasms, so try to steer of triggers, and please don’t cause a startle on purpose for comic relief. I once was holding an iced tea in a combat movie, and all I can say is thank god the seat in front of me was empty. Otherwise, the person may have needed a poncho.
            Remember That Diverse Classrooms Are Awesome Classrooms
Having people of all kids in your class will benefit you & them. Even if you do not have a disabled student right now, some of these ideas are great for universal access in general, and will make inclusion a natural presence instead of a “special set up” for a specific person, and you will be prepared to help every student.
            In Summary
            These are just suggestions, and by no means do I intend to make sweeping statements about everyone’s needs. However, I think these suggestions could help us to make a better school environment. Unfortunately, people’s ignorance about disability is often excused based on the logic that “they didn’t know” but now is the time that we must challenge our educators to find out. Just like in other minority groups, our needs and experiences with discrimination are real, and we deserve all the help we can get in changing our culture. All of my teachers who opened their minds, tried harder, and thought more deeply made the rocky road of being the first generation of mainstreamers worth it, and literally gave me a reason to come to school. Never underestimate the difference you can make. Thank you.
Love,
Me


Friday, July 18, 2014

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.

Monday, June 30, 2014

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?

Friday, May 30, 2014

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."