Saturday, October 18, 2014

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.

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.

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