The Great (Culture) Wall – Disability and Society

I lost a friend once because I have Cerebral Palsy (CP).

She wasn’t a particularly close friend, more a “wave and chat for a bit after Mass” friend. Either way, though, it stung. It wasn’t her fault, of course, but more on that later.

We were in church, when it happened. I was standing next to her and my arm kept curling up, and I’d grab the wrist and force it back down; pretty standard fare for a moderate-to-bad day with my CP. I didn’t think anything of it but I did notice she kept looking over at it. As I am a big fan of letting people ask their own questions I didn’t say anything and yes, eventually she asked if I was alright. I told her yes, and explained what was going on.

I won’t forget the all-too-familiar mix of shock, pity, and something I can’t quite identify – embarrassment, maybe – on her face as she turned away. We didn’t speak again and she brushed by me and left right after Mass. Since then she’ll wave and smile, but we haven’t spoken.

Funny thing is, I don’t blame her. I don’t mean I agree with her actions but I do understand them. She, and I, and you, and everyone who lives in the United States (at least; I can’t comment on other countries),  have been brought up to understand that disabilities and the people who live with them are strange, uncomfortable things and are not to be spoken of in public. How could I expect her to react any differently when no one is ever taught how to act around or speak with those of us with disabilities? It is not a fault of one person, it is a fault of society.

Now, I’m not going to turn this into a society-hating rant. That’s not really my thing, and anyway, the people who reinforce the culture of ignorance (as in, ignoring the issue, NOT ‘being stupid’) were themselves taught to do so… and on and on in a great circle of insulation and profound lack of communication.

What I am going to talk about is why we should change that.

Breaking down the Culture Wall isn’t just good for ‘diversity’ or ‘tolerance’; it’s good for every individual who participates. If we can get past the discomfort, the social stigma, the pressure to stay silent and avoid the topic, we can all learn so much from each other. ‘Disabled’, ‘handicapped’, ‘able-bodied’, ‘physically normal’, ‘mentally impaired’ – no matter how we (or society) choose to label ourselves, we all have something to gain.

Open communication can help those without disabilities better understand what it’s like to have one. Whether it’s the physical challenges we face, the help we need from others and our unwillingness to ask for it, or the social discomfort that comes with anything out of the ordinary, there’s a lot that can be learned. We can also provide ourselves as examples of innovative, out-of-the-box thinking and help others look at problems in new and unorthodox ways. I talked in another post about our innate ability to innovate and invent; we can share this ability with others and help them learn to do it themselves. Many of us have unique gifts and different worldviews that are never shared because of the social awkwardness barrier between us and our physically ‘normal’ counterparts. We live in a slightly different world than most and can open that world to others, if only it were ‘socially acceptable’ to talk openly about our experiences.

On the other side of things, learning and communication is a two-way street. Many of us (myself included) by definition don’t know what it’s like to not have a disability. I, for one, really enjoy talking to people and learning how they do things. I like watching people do manual tasks like knitting or typing. I get ideas to adapt and use myself, often things I wouldn’t have thought of on my own. More importantly, through conversation my own view of the world is expanded with their experiences, thoughts, and opinions. Just as we can teach others, they can teach us.

To me, though, the most important part of breaking down the Culture Wall is the communication itself. Each time a person with a disability has an open conversation with someone who does not have one, they both leave with more knowledge and a little less discomfort the next time a similar conversation comes up.

That’s really my goal in all of this: to help everyone realize that we’re just people, like everyone else, and/or that open dialogue doesn’t have to be frightening or uncomfortable. I want to ease that social stigma and break through the wall so that it becomes a comfortable thing to have a disability. Right now, it can be very uncomfortable to be in the presence of a person with a disability. No one talks about how to handle these situations. It’s impolite to ‘notice’ it, but ignoring it can feel rude, too. It can be hard to know how to act, what to say. The situation becomes fraught, and conversation dies.

That sort of situation is all too common, and breeds discomfort on both sides. The person without a disability feels awkward and trapped, and the person with a disability can feel alienated. It’s no one’s fault but that doesn’t make it any less damaging. What we lose when we shut down communication is, well, community. The sense that everyone belongs. Start talking, start embracing, and we will reach a point where everyone feels included. Everyone deserves that feeling.

More than that, a sense of community is necessary. It enables us to work together, get things done, and live up to our full potential. It fosters friendships, cooperation, and (as we are social animals) a general feeling of happiness and well-being. We lose that, as we lose many things, if we make it ‘weird’ to acknowledge that not everyone has the same abilities as everyone else.

I’m not saying that it should be okay to just walk up to anyone with an obvious disability and ask about it. Obviously that is rude, just as it would be rude to walk up and comment on someone’s racial heritage. But I do want it to be talked about – with friends, family members, people with whom it’s fine to have weird conversations. I want kids to learn about it in school. I want to start young and build up.

In the end, one day, I want us to reach a point where conversation has happened, the wall is gone, and it’s simply not awkward anymore. Just as it’s completely normal to see many different skin colors on a given street, it will be completely normal to see wheelchairs, canes, crutches, service animals, empty sleeves, or any other outward sign of a disability. What I want, what I will always be working for, is the day when saying ‘I have a disability’ is no more shocking and uncomfortable than saying ‘I have brown hair’. They are both simply facts about me, and neither is defining.

There is much to be gained on both sides when we break down the Culture Wall, and much that is lost simply through the lack of open dialogue. Opportunities. Friendships. Understanding. Broader worldviews. Humor. Self-realization. And change. Always change.

Change is good. Let’s get there together.

pediatric-stroke-blogger-heather-tarney

Article by CHASA blogger, Elizabeth Tarney, a student at North Carolina State University majoring in Zoology. Elizabeth was diagnosed with hemiparesis due to a stroke in utero at about four months of age, but hasn’t let that stop her from doing… anything, really. She is a fencer, hiker, rock climber, and white-water rafter. At NC State Elizabeth is an activist for disability awareness and the president of a disability advocacy club. She plans to combine that passion with her love of animals to someday train service animals for children with special needs. Read more posts from Elizabeth.