So, Disability Studies is an emerging interdisciplinary field/theory that literature, sociology, history, cultural studies, and the like are beginning to use as another tool to talk about “otherness.” It happens to fit in nicely with other messy topics centering around the “other,” – the fancy word for otherness is “alterity” (my favorite philosopher on this topic is Levinas) – topics like race, sex, gender, and basically any minority.
Bear with me while I get a little theoretical for one moment; you can skip to the next 2 paragraphs if you want. No hard feelings. Anyway, the “other” is basically anyone who is not your “self,” but of course, there are myriad philosophies out there about how this leads to ethics and such, based on how one should treat the “other.” Think Sartre, Camus, Heidegger, Buber, Levinas, et al. I’m not going to get into that here, but I do want to get in to how this plays out in society. Basically, pick a topic. Let’s say race. As a white person, races different from mine are “other;” we do not have a shared experience in that regard. It also happens that I live in a society in which the majority race is white. Our government was designed by white men, for white men. Our institutions are white institutions. What we can chalk all of this up to is that our society is one in which the white experience is the norm; this is the normative experience.
You can extend the normative to any dominant experience. Being straight is normative. Being cisgender is normative. Being able-bodied is normative. Do you see where this is going? Some normative experiences are culturally/geographically dependent (i.e. being white isn’t the norm everywhere), while others are not (i.e. being disabled is pretty much never the norm). So, what does this have to do with Disability Studies? Well, by studying, and theorizing, about the way the disabled experience is different (i.e. “other”), we may be able to create a more inclusive society, one that includes experiences beyond those of the majority. Now you see why people who do Disability Studies also look to other theories and fields to talk about disability. Feminism, cultural studies, LGBTQ studies, postcolonial theory, among others, connect to each other in that they all address the relationships between the normative and the non-normative. This blog is about my experience with a non-normative body and how it shapes my world view.
Wake up! My academic mumbo jumbo is complete, so let’s move on to the good stuff: good cripple, bad cripple. This is a concept rolling around out there among those who do Disability Studies that normative society (able-bodied folk) have imposed two categories for us disabled folk to fit into. The good cripple is the one who doesn’t complain too much, the one who is upbeat and optimistic, the one who overlooks most of the ADA non-compliance issues, the one whose story inspires able-bodied folk because they have “overcome” their lot in life. They triumph! The bad cripple (there’s a blog about that) is the bitter one, the one who is depressed and mean, the one who is critical of every public space, the one who needs to “get over it.” BluntShovel does a nice job of talking about being a bad cripple, and the pressure one feels to be good when you want to be bad! I love, love, LOVE this post about why the “good cripple, bad cripple” binary opposition needs to change, and an interesting article, “Call Me a “Good Cripple” If You Must,” on the topic as well. Independencechick has got it right, if you ask me.
I have good cripple days and bad cripple days. I want friends, family, and colleagues who understand both. Of course I enjoy it when people tell me how well-adjusted I am, but it makes talking about the bad days tough. Sometimes my body hurts so bad that I just want to cry, but the “good cripple” in me only lets a select few see that side of me. But, I’m getting better at showing the other side of me. I think it’s important. How is society going to change if I’m the one who has to overcome society? I think most advocates have to be grumpy from time to time. As with most things, balance is essential. I’ve learned that being the good cripple too much has had the unwanted side-effect of people not really thinking I’m disabled or not understanding the extent of my underlying issues. My skeleton is a hot mess: that’s why pseudoachondroplasia is a skeletal dysplasia, see?
So, what part do you play in all of this?
Ask if I need help. Who doesn’t need help at certain moments. I think many people are afraid that disabled folks want to do everything on their own. To be sure, there are people like that out there, and they aren’t all disabled. But, if it looks like I might be struggling, I probably am. I love it when people hold doors or offer to reach high-up items at the grocery store. It makes people feel good to help, and I like not having to always ask.
Speak up. When you see someone illegally parked in a parking space, leave a note, – it doesn’t have to be nasty – or inform whoever might be in charge. Go out of your way when you have the time. Having a non-normative body means that we have to go out of our way to function in a world built for people with normative bodies. Advocate! I would love to see as many Facebook profile photos advocating accessibility as I do marriage equality, cancer awareness, or whatever.
Educative yourself; become thoughtful. If you have a friend, relative, or colleague with a specific disability (that they have disclosed, or is obvious), do your homework. I don’t expect for you to become an expert, but my mind would be blown if someone actually anticipated some of the problems I might have. My dissertation advisor read Ursula Hegi’s Stones from the River, and he told me that it had never occurred to him that it was painful for my legs to hang off a chair. I explained that, in high school, I had a stool in every classroom, but that I gave that up in college. The next day, there was a stool in the room where we had our graduate seminar. He told me I didn’t have to use it if I didn’t want to, but it was there. What a great feeling! I have never felt so welcomed as I have when friends and family have thoughtfully placed stools in strategic places before a visit. Recently, I was visiting a friend who had purchased a stool just for me. So wonderful. Or when I find a coffee cup and dishes waiting for me down low when I wake up in the morning. Such nice gestures.
Listen. I know it might be uncomfortable to hear about my pain or frustrations, but just listen. Don’t explain things away, or say things like “well, at least you can walk.” Don’t even get me started on that one. That time you broke your leg is not the thing to talk about when I’ve just found out my ankle is beyond help. Just listen. I’ll listen to your story another time. I promise. One more than one occasion, I have heard that people of color often encounter a similar situation when they bring up race or racism. People get nervous and can’t relate, so they might talk about the time someone told them they were a bad dancer, and they were sure it was because they were white. Reverse racism. Not the same.
Now is the time when I insert a nifty quote from a novel I finished last month, Americanah by Chimamanda Ngoziwhich Adichie. I think that race and disability are similar in many, though not all, ways because difference makes people uncomfortable, so talking about it is uncomfortable. The burden to have that tough conversation often shifts to the different person, so it’s nice to have someone to back you up.
Understanding America for the Non-American Black:
Thoughts on the Special White Friend One great gift for the Zipped-Up Negro is The White Friend Who Gets It. Sadly, this is not as common as one would wish, but some are lucky to have that white friend who you don’t need to explain shit to. By all means, put this friend to work. Such friends not only get it, but also have great bullshit-detectors and so they totally understand that they can say stuff that you can’t. So there is, in much of America, a stealthy little notion lying in the hearts of many: that white people earned their place at jobs and school while black people got in because they were black. But in fact, since the beginning of America, white people have been getting jobs because they are white. Many whites with the same qualifications but Negro skin would not have the jobs they have. But don’t ever say this publicly. Let your white friend say it. If you make the mistake of saying this, you will be accused of a curiosity called “playing the race card.” Nobody quite knows what this means.
When my father was in school in my NAB country, many American Blacks could not vote or go to good schools. The reason? Their skin color. Skin color alone was the problem. Today, many Americans say that skin color cannot be part of the solution. Otherwise it is referred to as a curiosity called “reverse racism.” Have your white friend point out how the American Black deal is kind of like you’ve been unjustly imprisoned for many years, then all of a sudden you’re set free, but you get no bus fare. And, by the way, you and the guy who imprisoned you are now automatically equal. If the “slavery was so long ago” thing comes up, have your white friend say that lots of white folks are still inheriting money that their families made a hundred years ago. So if that legacy lives, why not the legacy of slavery? And have your white friend say how funny it is, that American pollsters ask white and black people if racism is over. White people in general say it is over and black people in general say it is not . Funny indeed. More suggestions for what you should have your white friend say? Please post away. And here’s to all the white friends who get it. Adichie, Chimamanda Ngozi (2013-05-14). Americanah (pp. 361-362). Knopf Doubleday Publishing Group. Kindle Edition.
This brings me back to otherness and normative behavior. These things I have mentioned are all ways of recognizing, and legitimizing, my “other” experience. This is a step towards creating an inclusive society: to understand that we are all “other” in some way and to make steps to ensure that whenever we are not the norm, we can participate. Be the The
White Able-Bodied Friend Who Gets It. I have a few of them. I hope they know who they are.