Emily recently graduated summa cum laude with a B.A. in English from Adelphi University on Long Island, New York, where she was born and raised. This past summer, she completed an internship at the Association of University Centers on Disabilities (AUCD) under the auspices of the American Association of People with Disabilities (AAPD) internship program. Emily is a passionate self-advocate and is pursuing a career in which she can use her communication and love of writing as a means of positive change for all disabled people. You can follow Emily on Twitter and check out her blog on disability issues and lived experiences with her disability, “Words I Wheel By.”

My parents raised me to be a voracious reader. Some of my favorite memories of growing up involve hearing bedtime stories as I drifted off to sleep, learning to read chapter books by myself, and filling my bookcase to the brim with my hauls from Barnes and Nobles. Because of this, I have always found joy and comfort in getting lost inside someone else’s reality, immersing myself in the lives of the characters unfolding in the pages of my book. Part of the fun came from finding connections between my lived experiences and those occurring in the stories I was reading. However, there was always a huge part of my life that was almost never reflected back at me in the children’s book characters I grew to know and love: having a disability.

So many of my favorite childhood books had morals and lessons about accepting people for who they are, but characters with disabilities were few and far between. It was always another reminder that I didn’t quite fit the cookie cutter traits used by so many children’s authors when I was growing up in the early 1990s. Themes of diversity were only just starting to gain momentum at that time. And even then, I can only recall seeing disabled kids in specialized genres.

In fact, the only two children’s books I owned that featured kids with disabilities, both of which I still have, are Andy Finds a Turtle and Patrick and Emma Lou by Nan Holcomb, published by Turtle Books. Emma Lou has spina bifida, and both Andy and Patrick have cerebral palsy. Each book centers on triumphing in the face of disability. And while I loved those books and read them until they were well worn, they were isolated instances of disability in children’s literature. A true sense of inclusion was missing.

Twenty years later, I notice that children’s book sections in libraries and bookstores are inundated with examples of diversity. The shelves are filled with titles promoting acceptance of all races, religions, abilities, sexual orientations, and family structures. It makes me wonder, though: why was I denied the chance to feel included when I was little? And is enough being to done to change that for disabled people now?

What concerns me is that disabled characters are often integrated in the form of tokenism, meaning one token character that could be considered “different” is included in the plot. And even then, such characters are frequently depicted in stereotypical ways, despite being created by authors who may have the best of intentions.

I find this not only in children’s books but also in adult literature. I’ve spent so much of my life missing accurate reflections of my reality in the books I read. From the bedtime stories of my younger years to the ever-growing collection of novels I’ve amassed in my adult years, disability is rarely represented well, if at all. After so many years of reading, I’ve grown weary of this.

There is an incredibly misguided and oversimplified assumption made by many authors that disability is negative, so they either use it as a literary device or avoid including it altogether. Once, I was asked why I’d even want more disability representation in what I read if I choose to look at reading as an escape or a relaxing break from reality. I don’t see my disability as something unfortunate that I want to escape. Perhaps I may want to escape emotional or physical issues related to my disability, but it is inherently part of me – and I’m proud of it. So, to have disability reflected back at me as an unfortunate circumstance, as something that needs fixing, or to have it seem as though disability just shouldn’t exist in a perfect literary world, makes reading the opposite of an escape at times. Instead, it makes reading another reminder of the ways in which disabled people are still not accepted and included.

I’d love to see inclusion of disability in literature become less about morals or tokenism and instead become a seamlessly integrated aspect of literature for audiences of all ages. I know there are authors out there who work tirelessly to overcome misrepresentations and the lack of disabilities in both children’s and adult literature, and theirs is the writing I will continue to seek out to fill my bookshelves.

Emily recently graduated summa cum laude with a B.A. in English from Adelphi University on Long Island, New York, where she was born and raised. This past summer, she completed an internship at the Association of University Centers on Disabilities (AUCD) under the auspices of the American Association of People with Disabilities (AAPD) internship program. Emily is a passionate self-advocate and is pursuing a career in which she can use her communication and love of writing as a means of positive change for all disabled people. You can follow Emily on Twitter and check out her blog on disability issues and lived experiences with her disability, “Words I Wheel By.”

All too often, portrayals of disability in literature mirror the common assumption that disability signifies helplessness. And while this literary trope is unfortunately true to the thought processes of many nondisabled people, using it in writing perpetuates the mindset that nondisabled people best know the needs of disabled people. The idea that disabled people do not know how or when to help themselves is usually thrust upon us by well-meaning nondisabled people. Yet, an able-bodied person’s attempt at a good deed can become a disabled person’s unwelcome frustration.

When written responsibly, literature can spark positive change by helping society to move past stereotyping disability. However, in order for this to occur, it is imperative for nondisabled authors to assess their own assumptions and behaviors and move towards a greater understanding of the lived experiences of disabled people. To provide some insight into the ways that assumptions of helplessness diminish the rights and independence of disabled people, I’d like to share a few anecdotes in the hopes that writers will think twice before depicting disabled characters as helpless, and that nondisabled people will think twice before rushing to an unneeded rescue.

To start, I suppose it can be a bit of a sight when I’m out with my boyfriend. We both use wheelchairs, and without fail, we attract attention and garner offers of assistance everywhere we go. It’s certainly understandable, because going places is an interesting process for us. For instance, here’s how we get in his car: We take a step stool out of the trunk, put it next to the passenger side, and I climb in. Then, my boyfriend moves my wheelchair, takes it apart, folds it up, and lifts it into the trunk. Finally, he gets in the car, takes apart his own wheelchair, puts it in the back seat, and off we go. To get out of the car, we reverse all these steps.

Now, you’re probably thinking one of two things. You’re either amazed at how buff and manly my boyfriend seems for doing all the heavy lifting, or you’re wondering how we go through a process that sounds so complicated just to drive somewhere. But what people don’t usually seem to realize is that we’ve got things under control. We have our routine down to a science, and we know what works for us. It actually makes me laugh sometimes because people offer help when I’m in the middle of a parking lot with my boyfriend, and I wonder how it doesn’t occur to them that we clearly already made it to the location on our own, in spite of the fact that we don’t have helpful wheelchair-folding elves in the backseat.

I do see the reasons why the first instinct of an able-bodied person is that two people in wheelchairs must need help. I just wish people wouldn’t make automatic assumptions like that. It’s not that we’re unappreciative; we just know what methods are best for us the same way other people know what works for them. And if either of us needs help, we’ll ask! Our wheelchairs do not preclude us from being in touch with our own needs.

While I try not to begrudge people for offering assistance when I look like I might genuinely need it, there are certain situations in which offers of help leave me truly confounded. One such instance occurred quite recently while I was sitting outside an airport. I was with my mother, who happened to be using her power wheelchair at the time. (Yes, I know I’ve got a veritable microcosm of the disability community in my life!) We were guarding over our luggage while my dad went to park the car, chatting and joking around. A woman who already had two huge suitcases in her hands approached us and politely asked “Do you ladies need any help?” Forget the fact that there was no way she could have helped us with her hands full…we didn’t need help in the first place! Our luggage was resting on the ground and my mother and I were literally just sitting there. There was no indication that we were struggling. If an able-bodied person was standing next to a suitcase and didn’t give off any cues that he/she needed help, it would be weird for a stranger to approach the person and offer help. But somehow, visible indicators of disability automatically give people license to assume I must be in need of help even when I’m not asking.

Thankfully, most people stop asking if I need help after the first time I decline, but on rare occasions, people try to be “helpful” to the point of overstepping boundaries and causing downright uncomfortable situations. I’ll share a story that happened while getting in the car with my boyfriend. While I was interning in Washington, D.C. this summer, he came down to visit me. One evening, he picked me up from work, and as we were about to get into the car, a man approached us and offered help. When we said no thanks, the man didn’t back off, but proceeded to ask repeatedly if we were sure we didn’t need anything. Uh, yes, I think we’re sure of our own needs. And yet, each time we said no, the man moved closer until he was standing over us. Just as we finally thought we’d shaken him off, it turned out the man was parked next to us, so we told him it would be most helpful if he’d move his car so I would have more room to get in our car. Instead of leaving, the man got in his car and stared at us with his window open, continuing to insist he’d be there if we needed assistance as I awkwardly tried to climb in our car as fast as possible. The man finally left, albeit reluctantly, as we were pulling out of the parking lot. Not only was he practically babysitting us, but also he was completely undermining our personal authority.

Even after all this, I’d still prefer a person to ask me (once) if I need help rather than helping me without asking. A typical example of this happens all the time when people grab on to the back of my wheelchair and try to push me without asking first. I do realize that to observers I may sometimes appear to need assistance, because I’m not exactly an athlete in the Paralympics and I can be slow when I’m pushing myself. But I know my capabilities and my limits, and though I’m stubborn at times, I’ll eventually relent and ask for a push if I need it.

There is a key movement in the disability community for the right to self-determination, which means that we have the power to freely choose how and when we act or are acted upon, without having the will of nondisabled people forced upon us. Or, in the simplest possible terms: disabled DOES NOT mean helpless. I cannot stress this enough. Being a good person is a great thing, but please don’t do it at the expense of allowing me to determine my own needs. It’s time for able-bodied people to differentiate between politeness and infringing upon my independence.