This isn't a feel good story. It's not an essay on the virtues of strength and bravery, neither is it an attempt to inspire you with tales of overcoming adversity. It's not a lesson on looking past disability and discovering some inner beauty bullshit. This is a call to action. This is about acceptance and inclusion, about seeing and celebrating. Like all diversity, disability can be beautiful.
Diversity is a hot topic. It means recognizing our differences, seeing what distinguishes us from the majority and then throwing a party hat on it and embracing it. In recent decades, Western society has made great strides in challenging stereotypes and acknowledging diversity in skin color, size, age, race, sexual orientation and gender. We're still far from equality on any of these issues but the conversations exist and progress continues. We see these identities depicted in media and when we don't, or when we see false, corrupted versions of them, we are justifiably outraged because we understand that representation matters.
What we observe in television, film and advertising is critical to our understanding of all aspects of society. Media has a direct and profound impact on how we think about ourselves and others. The inclusion of disability into our socially acceptable model of diversity is an area where we still have a lot of work to do. Across multiple media, disability is underrepresented, misrepresented, or just plain ignored. In fact, where disability is concerned, mass media is telling us a big, ugly lie.
I wasn't born with a disability. But as an adult, I find myself needing to create a new identity that includes it. My search for positive examples to inspire this acceptance of a new way of being has as much to do with how I feel about myself as it pertains to how others perceive me. In the absence of representation, the message can only be that disability cannot be beautiful and I refuse to accept that. Fashion and beauty are where we look to see the heightened, idealized versions of ourselves that help shape our style which is so critical to identity. Yes, fashion is fantasy but in a world where none of us are perfect, we should all be able to find something recognizable, something that reminds us we belong.
I'm looking for the people who look like me, who look better than me. I need more than just Iris Apfel or vintage Madonna to show me how to style a cane. I need to see the cool girl with the walker so that I can think, wow. She looks hot. I can look hot too. I'm just as vain and superficial as everyone else. This frivolous, materialistic, self-obsession is part of my North American birthright and I want in.
So, just where are these pretty people? In movies and TV, disability is almost always used as a plot point and not as something a real person happens to live with. In the world of entertainment, disabilities are turned into stereotypes of victims and burdens, heroes or freaks; lazy tropes that are used to make us feel specific emotions. These careless characterizations are not just hurtful, they're dangerous. They inform how we see disabled people in real life and lead us to believe they are low status individuals who cannot be happy, lead productive lives or be self-sufficient. This sucks. It's also wrong.
The Victim stereotype is meant to elicit pity with stories about the plight of the disabled that reinforce the idea of how awful their lives must be. Dickens did it with Tiny Tim in such an overt characterization that even the boy's name evokes pity. Victims can also be packaged as burdens whose lives aren't worth very much. Or at least not as much as that of the burdened person. By contrast Heroes elevate the status of disabled persons, putting them on pedestals for simply living their lives. Their accomplishments tell us that if disabled persons just try hard enough, they can triumph, overcome their obstacles and live 'normal' lives.
Daytime talk shows and reality TV have become modern day freak shows. Disability is the spectacle and as it turns out, we haven't evolved since the days of PT Barnum's biological oddities. Meanwhile, physical deformities are used to portray super villains driven to crime or revenge through their unfortunate fates. From Captain Hook to Darth Vader, movies have us socializing children to fear and associate negatively with disability. From a young age we can be convinced that disability is a punishment for being evil, or that disabled people probably want to kill you.
All of this is, of course, crap. These are not my people. Like most disabled persons, I don't see myself reflected in any of these stories. While I would love to blame my chronic bitchiness on Multiple Sclerosis, people tell me I was bitchy well in advance of my diagnosis. And while it's true that some children are afraid of me, doctors tell me 'super villain' is not actually a symptom of MS.
These stereotypes are not how the majority of the disabled population experience disability or life in general. But these ideas are so pervasive and powerful that they've become normalized. We believe these harmful lies without questioning them.
Part of the problem is that disabled people have little or no influence on how stories are told. It's a population that is under-employed in every sector and media is no exception. Stories are most often not written by disabled persons and the number of actors in leading roles with disabilities is not a number that exists. Even when the story is about being disabled. Imagine if this were still true for other marginalized groups. Our false convictions are so strong and so deep that most of us don't even see a problem with this.
In addition to what we think disability is, we are left with what we think disability is not. The media wants us to believe that persons with disabilities cannot be considered attractive, desirable or sexual.
In the fashion and beauty realm, there is no narrative. Disability is altogether ignored, as if it doesn't exist; as if we don't also have budgets for things like lipstick and lingerie. We are lead to believe that disabled people are not also girlfriends, boyfriends, lovers, parents and partners, workers, travelers and friends. We don't recognize disabled persons as contributing, participating members of society.
It's thus become accepted that disability disqualifies you from being beautiful. When someone does describe a woman with a disability as attractive, it can feel like a loaded statement. Maybe it's being said with shock and surprise. Or perhaps it's qualified with something like "You're pretty, for a disabled chick" or "What a waste of such a pretty girl to be in a wheelchair". The people saying these things actually think they're doling out compliments. When I was in the process of being diagnosed, someone who thought she was being supportive said to me, "Don't worry. Pretty people don't get MS."
WTF? Wherever did we get that idea?
Society would have us believe this demographic doesn't matter anyway because it doesn't affect that many people. But according to the 2009 US census, 9.9% of working aged Americans had a disability. That means 1 in every 10 Americans aged 18-64 reported significant difficulty with hearing, vision, cognition, ambulation, self-care or independent living. Yet we don't tend to think of this population as visible minorities worthy of accurate and careful representation.
If we don't truly see the diversity, we don't see the injustice. In race or gender this translates to things like discrimination and income inequality. In disability this can mean lack of accessibility, or issues of employability. Transgender bathroom rights are in the news every day recently but despite the ADA (American's with Disabilities Act) having been around since 1990, there are many public spaces in North America that don't have accessible bathrooms at all. While we are arguing and passing laws about who gets to pee where, there is a whole segment of the population that has nowhere to pee. Why aren't we outraged about that?
It's time to get real about the stories we tell about disability. Why is it that we're more comfortable seeing the undead eat brains than we are hearing about an actual human with a colostomy bag? Disability is a normal part of the natural diversity of the world. It's not going anywhere and we need to make room for it. Increasingly positive media examples have lead to the rising status of several diverse groups over recent years. The acceptance of disability should be no different. Media not only influences societal trends, it practically dictates them. The arts are by nature forward thinking and innovative and have a real opportunity to change ideas in a massive and meaningful way. People with disabilities live full lives and are many things, including beautiful. It's time to tell these stories.
Photos by Gene Wu