It's Your Job Too: Dismantling the Myth of Specialness and Making Inclusion a Community Responsibility

Since the time I was very young, society instilled in me the idea that as a disabled person, my needs were “special”. Special services. Special chairs. Special surgery. Special programs. And since that time, something about the word in that context always rubbed me the wrong way. As a little kid, I could not articulate why, but years of life and many more “specials” have helped me find the words. The disability specific services and programs I have participated in over the years are indeed special, but not because they were for people with disabilities or because I came from some far away incomprehensible planet. They are special because they filled my life with people and experiences that made me a better person. Classifying a disabled person’s needs as “special” is definitely well intentioned, but it has a negative impact on policy and the every day effort to end ableism.

Calling our needs special isolates them from the rest of human needs, and in the process shrouds them from the body of general knowledge. When needs become special, they are tucked away in special departments run by special people who specialize in specialness. Disability becomes its own hidden corner of the universe as it is implied that only those with a related job or a family member with a disability should ever bother to explore the issues that come with living a disabled existence. The responsibility to learn about and be aware of our lives is seemingly confined to the world of specialists and people who “have experience with those kind of people”.

Because of this discourse, the responsibility of people outside of the direct disability community to include and think seriously about access issues is shifted away based on the belief that "special services" will deal with it. This discourse operates on the belief that every day people don't have a stake in such affairs because somebody with "disability" in their title will take care of it. I have been disabled for my whole life and I have news for you. Inclusion and access is everyone's business. We are part of your schools, workplaces, stores, hospitals, and communities, and this is a justice issue. The issues at hand are really basic human rights and basic advice about how to treat other people with respect and dignity. You don't need to be a specialist to do that, so if you thought disability issues were only meant to be handled by so-called professionals, nurses, doctors, and people who have earned special certificates, then you have lost understanding of what a community means.  In a community, everyone is included. Yes, there are some ways we need certain things adapted that require a certain learning curve and a little bit of extra time, but at the end of the day our needs are just some among many, and to be honest, there's nothing particularly special about them. We need to eat, sleep, get dressed, bathe, go to the bathroom, breathe, and a whole bunch of other painfully ordinary things.

The way in which we accomplish these tasks may not be typical, but the needs themselves are not so special, and when we stop thinking of them this way, we invite the entire community, and not just a select few deemed worthy to give a damn, to meet them. Just like different customers at a business have different requests, we might need some things adapted differently for us. In a marketing context, meeting different customer expectations is considered part of being innovative and stepping up to the plate. Why can't we think of accommodating people with disabilities in everyday life according to the same logic? It doesn't take special training to do the right thing and if you're not sure how to make something inclusive, go ahead and ask a person with a disability. Authentic inclusion is bound to fail if the only ones viewed as responsible for implementing it have fancy titles.

Sometimes, all the specialization and "othering"makes people who want to be involved in including us believe they are not qualified to do so. I can't tell you how many times people have had a chance to be more accommodating and they have shrunk away from the opportunity because “doesn't somebody from disability services take care of that?” Yes, they do. Disability services and trained professionals definitely have their places, but so many inclusive actions are simple and do not require some special academically bestowed insight. If you're not sure how to be inclusive, just ask a person with a disability, and you'll probably realize that we’re just people.

Come behind the veil that has been constructed around us. We're just people and because of that, you should take an interest in our rights too. The myth of specialness creates adapted utensils that cost hundreds of dollars, when the secret "special" insight is probably a curved handle or a piece of foam. The myth of specialness fills catalogs with wildly overpriced items like the adapted umbrella that really is just an umbrella with a clip on it to attach to a wheelchair.  As soon as the word "wheelchair" enters the conversation, it's like the price inflation button has been pressed. The cost triples in deference to these perceived specialists, who honestly did not need a pricey special insight bestowed by academia, but probably just needed some creativity and design sense to make that umbrella. The myth of specialness makes power wheelchairs constructed from foam, leather, metal, and plastic cost thirty thousand dollars. The things we need may be a bit atypical, but it's time we incorporated them as a part of meeting consumer and human demands, and not as the brainchild of super specialists cloistered away in their own professional universe.

The myth of specialness makes people think it's not their job to build ramps, wheelchair accessible tables, or automatic doors, because some "special person" or regulation enforcer will take care of it. Newsflash: installing all of these features is not only the right thing to do, but also plain good business sense. Like I mentioned before, I need to eat (Oooooh special!) and if I can't open the door to your restaurant I’ll go eat somewhere else instead. As someone with no cooking skills and a strained relationship with dining hall food, I am quite a loyal customer, so your lack of automatic door is not only a disappointment for me, but also a tragedy for your earnings!

I am not arguing that there are no tasks related to disability that require training, but the fact is most of them don't. Common sense can go a long way, and so many of our needs may not even be related to our disabilities. The walls created by the myth of specialness give birth to “special toy” catalogs for “special kids”, as if the general market has no responsibility to include accessible toys in their catalogs. Disability specific publications have their place and I love rooting through the Sammons Preston rehab catalog as much as the next girl, but items we can use belong in the Macy's catalog, the Toys "R" Us catalog, the popular clothing stores, and the local restaurants as much as they do in any disability specific catalog. Then, we wouldn't have to venture to shadowy corners of the Internet looking for pocketbooks we can actually put on our wheelchairs and jeans that actually fit over are braces. Our mothers wouldn't have to traverse the area looking for suitable socks to wear with braces, and call each other in excitement when something finally looks like it might work. Because things we can use would just be there, much like how we are just there in the world and are not from some alien planet. We do not only exist in mythical special places, but sometimes it feels like we do when we can only get in to half the businesses on the block. I've probably been next to you in the ice cream shop and despite your speculations; my ice cream did not have special ingredients to sustain me until I return to my special spaceship.

Unfortunately, the myth of specialness puts up social barriers too, because it can perpetuate the belief that you need to be some kind of specialist or trained individual to even be with us. It need not always be in a therapeutic, research, or volunteer setting if you want to spend time with me. People with disabilities are real people and sometimes we want people to just be with us, no strings attached, no special training required. Anything you're curious about you will probably learn over time just from being with me, much like the young children on my block, who have grown up with an intuitive sense of inclusion just because we grew up together. I am one of your kind too. You can leave your special education textbook behind.

The myth of specialness spreads the belief that only the trained can help us. You can still hold the door for me. You can still pick up my phone. You can still do all the things for me that you would do for an able-bodied person as a good deed and not as a specialized task. People are so trained to see me as someone with a special assistant that there is sometimes a reluctance to act because it is perceived that my aide will just do it. For example, in junior high, when I still had a one-to-one aide, many of the kids would not bother to help me move my desk because they would just wait for my aide to do it. When I no longer had a one-to-one aide, the veil was lifted and gasp, nothing exploded if an untrained peer moved the desk or picked up my pencil.

My needs became part of the day-to-day goings-on in the classroom, no longer restricted to those deemed specially trained. It is true that not just any random person in my high school could help me with everything. I did rely on a nurse to use the bathroom, but my point is most of the things I needed were easily accomplished with a little effort from the people around me. And even my going to the bathroom was in itself not a special need. In case you haven't been told, everybody pees and prefers if you remember to button their pants when they're done. I may have needed someone to help me, but the task was accomplished in a way that it was integrated into the body of student needs. I was not trapped in the box of a one- to-one aide as the only solution, because I didn't need to be. Because when all people give a damn and not just a select few designated to do so, our thinking expands. I am so thankful for all of the people who have allowed their thinking to expand so that I could thrive.

When special needs become just needs, we will live in a world where children with disabilities are not routinely excluded from activities because lack of experience with "special populations" is used as an excuse. We will live in a world where fifth-grade wheelchair etiquette no longer suffices as a proper exploration of disability as a diverse group. We will live in a world where disability awareness events as the opportunity to hear the perspectives of disabled leaders not restricted to National Disability Awareness Month. We will live in a world where four-year-olds with Down Syndrome can have their birthday parties wherever they like because society recognizes that you don't need special training to play with a kid and make him feel awesome on his birthday. See article here. We will be seen as customers, friends, family, and coworkers, not liabilities.

The damage of the myth of specialness was very well exemplified by a recent experience I had at a campus McDonald's. A bystander stopped to help me grab my food and set the bag on my lap so I could carry it home for my friends. The clerk immediately assumed that the person was my paid assistant and began to hand my change to him. She seemed somewhat surprised that he was just a person helping another person. The fact that this was beyond the realm of her imagination says a lot about our society’s reluctance to see disability access as a shared responsibility. So next time you see someone helping me, it might be my employed personal assistant. But it also might be my friend, or my sister, or a person passing by. You don't need to be employed by the Department of Human Services to give a damn about my needs. Chances are, my needs are really similar to yours.

As disappointing as it may be, we're not so " special" after all. (Cartoon credit: Crippen Cartoons at http://www.crippencartoons.co.uk/wp-content/themes/elegance/lib/scripts/timthumb/thumb.php?src=http://www.crippencartoons.co.uk/wp-content/uploads/2014/08/Feet-and-Mouth-2001-Custom.gif&w=660&h=467&zc=1&q=100 )

Image: A presumably able-bodied man at an art museum with a sign that says Handicapped Feet and Mouth painters. A short-statured, presumably disabled artist gives the man a painting with very "typical looking" footprints. Disappointed at its similarity to so called "normal" paintings, the museum staff member says: This isn't quite what we had in mind. Cartoon also pokes fun at the event's title. The disabled artist has literally painted feet, rather than indulging the museum's desire to "other him" because he paints using his feet.

*Thanks Ellen at Love That Max for bringing my attention to the news story about the gymnastics party.

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

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?