I am incredibly glad to be back. December got off to an extremely hectic start at work, with lots of assignments every day. I’ll have to do it again tomorrow, but I love my job and am glad to have a break to write to you today. I’ve been saving this post and the question that goes along with it: why don’t we treat disability as a culture?
I mean sure, in some respects, we already do. The Deaf community proudly says it has its own culture, and that community’s right. Deaf arts, deaf theater, deaf schools and sports–they’re all around us and that’s a great thing. There are also certain cultural “signals” and “customs” that we follow in terms of persons with disabilities. For example, it’s common courtesy to say “hello” and “goodbye”, or some equivalent, as you enter or leave a room if a person in it is blind. It’s considered rude to lean or hang on a wheelchair. Movies and TV are often now equipped with captions or visual descriptions, and it’s usually considered extremely rude to use the R word, though we’re not where I’d like to be with that issue.
Yet in so many ways, we still treat disability as if it’s abnormal and should be “fixed,” especially when it comes to cultural behavior. For instance:
-If a person with a physical disability requests an automatic door, we assume they’re lazy.
-If a person with Asperger’s Syndrome doesn’t understand a joke, we assume they’re standoffish or impolite.
-If a person with an intellectual disability is in his or her 20s and still enjoys toys and Disney, or still believes wholeheartedly in Santa, we think that’s weird (and really, why is that weird? We’d all do well to believe in the spirit of Santa, if not the actual fat guy in the red suit with a beard).
What if, instead, we accepted these differences as part of a culture, like we accept African-American, Hispanic, Jewish, or Buddhist culture? A culture that says:
-Not everybody uses the same entrances, but everybody deserves to come in
-In this culture, what is rude and what is polite may be in flux. Ask first.
-In this culture, we value Disney, Santa Claus, and “childish” things not because we are perpetual children, but because they help remind us and others to be warm, caring, optimistic–NICE.
-This culture may not accept various sensory experiences. Crying over a clothing tag may seem weird to you, but gosh, those things scratch! Not being toilet-trained at 10 years old may be pathetic to you, but in this culture, it’s accepted that the body may need a little help working. Yes, we recognize that urine and feces smell and feel gross, but we’d rather you accept them as part of what we live with. You know, kind of like we accept that the Third World may have different nutrition and monetary standards than us?
In case this example seems a bit fuzzy, let me do something else to clear it up. Recently, I watched the movie Elf, a modern Christmas classic made in 2003. Its protagonist is Buddy, an elf raised at the North Pole but adopted from Earth. He lives in elf culture, so when he goes to New York City to meet his dad, a culture clash of epic proportions ensues. Modern New Yorkers do not understand that in elf culture:
-Singing loudly at all times, even those that are considered “inappropriate,” is acceptable and encouraged
-A steady diet of sugar, candy canes, and maple syrup is a must
-People walk around in pointy caps, pointy shoes, and fur-lined coats like it’s no big deal
-Santa is DA MAN, and preparing for any of his visits is a BIG DEAL. It darn well better be the real Santa too, because they hate imposters in elf culture.
-It is every elf’s mission to make every day feel like Christmas.
Watching Buddy try to adapt to human culture gave me the idea for this post, but I also noticed something a little disturbing. Why was no one acknowledging his culture and helping him adjust? I mean, the poor guy gets muscled into a department store elf job without even knowing what a job is. People don’t tell him why he can’t do things, just that he can’t. This leaves Buddy confused and constantly feeling like everybody’s mad at him (which they are, but should they be? Probably not).
Sounds familiar, huh? How many PWDs out there feel like everyone is always mad at them, for breaking a rule they didn’t understand or making rules nobody else understands? It reminds me of Cynthia Lord’s book Rules (check it out on Amazon.com).
Now, I realize that sometimes, we have to integrate disability culture with temporarily able-bodied culture. For example, if you’re a parent and your child has Asperger’s Syndrome, you’ve probably had to explain that as much as he loves dinosaurs, people get bored if he discusses them all day. If you know someone with Down Syndrome, you may have had to explain that shouting out at a movie theater or doing some other “maladaptive” thing is not okay. We with cerebral palsy sometimes have to adapt to the fact that in able-bodied culture, we cannot skydive, and some areas are not as accessible as they should be. But that adaptation does not have to come with anger or frustration, and it doesn’t mean “assimilating” to make somebody else happy.
Instead of constantly expecting PWDs to adapt to them, what would happen if the able-bodied world adapted a little more to disability culture? Oh yeah, yeah, I hear you: “We have captions and Braille menus and automatic doors that cost a fortune! We’ve adapted enough!” Well, if that’s what you think, then you need to ask Santa for a new perspective, because the access we do have is not nearly as prevalent as we think, PWDs are bullied and discriminated against every day, and in most places, existing disability services could use some help or just plain stink. So let’s take a cue from Buddy the elf and learn some new cultural mores. Curl up and watch cartoons with a twenty-year-old if that’s what they do every day. Yes, tell your child with autism that it’s unhealthy to eat the same foods every day–but incorporate those favorite foods as much as possible. Be cognizant of what your loved one with a disability considers acceptable or unacceptable, and why, even if you think those standards are ridiculous. And make every day feel like Christmas–by accepting them. That’s a great gift.