DiversifYA: Marieke Nijkamp
|May 2, 2013||Posted by DiversifYA under Disability and Illness, DiversifYA|
As we told you yesterday, this week Alex and I are going to introduce ourselves. This will be my first questionnaire; I will do another one in a couple of months. Because although we try to keep every interview focused on one aspect of diversity, plenty of us have more than one diverse experience. We want to keep these interviews as accessible as possible, but do right to those experience too, so once they’re all published you’ll find them linked at the bottom of the interview. The tags to the side should make it easy to navigate through the different interviews. But that’s all we’ll do with labels here!
If you want to ask the interviewee more questions, you can do so in the comments or reach out to them if they are open to it. Please do remember they are under no obligation to answer as these questions can be rather personal.
1. How do you identify yourself?
For almost ten years I used a cane—decorated with multicolored duct tape—as walking aid. During most of that time, I referred to myself as the girl with the cane. Because guess what? People manage to picked me out of the crowd without hesitation. Besides, walking around with a cane as an otherwise apparently healthy young person means I had to grow thick skin early. Not even to deal with people who asked me if I just had it for decoration, but to deal with people who went out of their way to stare at me, to the point where I felt like a circus attraction. With people who were so decidedly uncomfortable talking to me, I could as well have come from Venus. And with the people who whispered behind my back on those days that walking was too painful and I ended up in a wheelchair instead, but would occasionally get up because not everything everywhere is accessible to wheelchairs. No, I’m not just lazy. No, I’m not just doing this to attract attention.
But yes, I learned early on that the best way to deal with being different was to own it. I am not my disability, but I do not hesitate to call myself disabled either. It’s just one aspect of my identity. I’m geeky, intelligent, occasionally short-tempered, impulsive, insecure, proud, creative, disabled, (let’s spoil my future interview, shall we?). None of these aspects alone form me, but all together do.
2. What did it feel like growing up with a disability?
Honestly, I also think I’m lucky. I don’t know what it’s like to be healthy or able-bodied, so I don’t have a comparison. I just knew I couldn’t do what other children my age did. I couldn’t play outside without tiring myself. I spent far more time in hospitals, and conversely spent far less time at school. Especially during high school there were days I only came to class for one period, weeks when my classes combined weren’t enough to fill even one day. But on the upside, that meant I had a lot of time to read, and I’d always been an easy student, so my schoolwork didn’t suffer for it.
I lived in a medical rehabilitation center for a year when I was 14/15, along with a lot of other children and teens, who had been in accidents, had suffered brain damage, who had been disabled since birth. It was easily one of the best experiences in my life. Sure, the therapies sucked, but they became part of daily life soon enough. And guess what? We did the same as every other teen. We went to school, we went to prom. We rocked out to Meat Loaf’s Paradise by the Dashboard Light. We fought, we made friendships, we broke the rules, we mourned losses, we celebrated birthdays and victories. We had our own slice of world and it was amazing.
3. What are the biggest challenges? Conversely, what are the quirks/perks?
The biggest challenge—more often than not, as you might have guessed already—is other people. People who, no matter how helpful they may think they are, decide for me what I can or can’t do, what is appropriate for people with a disability, how I should feel, etc. People who equate a physical disability with a cognitive or mental disability. And most of the time, the biggest challenge is that they honestly believe they’re helpful, because they come with a pre-formed image of what disability must be and it’s hard to dissuade them from that.
But at the same time, there are people who are wonderful and open-minded. The people who came to me without preconceived notions, but with stories to share. Like that woman who made the most wonderful hand-crafted wooden canes. Or that person on the train who, instead of a staring, commented on my cane and two hours later we were still talking.
Besides, did I mention the part where I spent more time out of class and reading instead? I had a laptop very early on, which made writing a lot easier too (and not just academically). Frankly, that was pretty glorious.
And, oh, wheelchair? Priority everywhere.
4. What do you wish people knew about being disabled?
I have my own challenges—aside from people the very simple fact of chronic pain—but that doesn’t change one single bit of who I am as a human being. I am neither lesser because I’m not whole, nor an inspiration to look up to when I do what we all do. Live. If that inspires you, awesome! Go for it! But please do not reduce me to some kind of object. We all have our own challenges, disabled or not, and I’d like to believe we all do the best we can. That’s enough.
5. What are the biggest cliches/stereotypes you’ve seen?
I *love* The Secret Garden. I love it, it’s one of my favorite classics. But please for the love of Gallifrey, no more Colins. No more disabled kids who are bitter, angry, and magically heal when they reach out and become more agreeable. Both the inspirational disability and the bitter disabled kid are tired stereotypes, and both are not just offensive, they’re toxic to how people treat and think about disability. Disability is not a choice, and it does not change us anymore than a broken leg would change you.
BONUS: What is your advice for writers writing diverse characters?
Aside from listening, researching, and making sure your diverse characters are just as well-rounded as all your other characters, I think the best thing you can do is to question yourself. Try to catch your preconceived notions and your assumptions and ask yourself what led you to those conclusions. Why did you come to them? Are they based on fact or on opinion? What influences your assumptions? Don’t go for the first solution that comes to mind, but allow yourself to explore the many other possibilities you have.
And in this case—if you have any questions, please feel free to ask away!