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Tension
Tension has always played a big role in my life. My muscle tension is higher than normal: it’s just part of having Cerebral Palsy. Every physical therapy or Pilates session eventually comes down to this – locating the tension and relaxing it, allowing more movement and freedom to my otherwise stiff right arm and leg.
When I’m more tensed, as I’ve been in the past few days, the physical effects are immediate. I feel it in my shoulders and back, I feel my legs refusing to move properly. I feel my right arm moving into a locked position close to my body. It’s always almost astonishing to realize how strong is the body and mind connection. For me, muscle tension is the very literal iteration and example of that.
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Represented
I love TV. It’s a somewhat one-way love: TV doesn’t always love me back, or at least it feels that way. Ever since I started my complicated and unexpected journey in university, finding TV characters with disabilities (then critic and analyze them, and present the result to anyone who’ll listen) became a weird habit of mine. It started with a project and a lecture I gave almost three years ago.
For me, the thing about representation is that it’s delicate. The nuances are important. Simply having a character in a wheelchair is not enough. The way she uses it, the story-line she’s getting, that’s what it’s all about. But when done best, representation gives me – as a person with a disability – a feeling that I too belong on the screen. I too have a story worth telling. For everyone else, it’s a glimpse of a different life experience; and isn’t this one of the best reasons to watch TV?
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Putting It Together
Every new year or new semester, I find myself trying to figure out my life again. How do I put everything together one more time? Do I do anything differently? What did I enjoy more or less, and what should get my attention? What can I leave behind?
To be honest, I still don’t know how writing about my disability, and discussing disability studies as a whole, fits into the great picture of it all. Sometimes it feels as if that’s all I’m ever doing. Other times it’s like I can’t even figure out which piece is a corner. Here’s to yet another try.
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1st Birthday!
One year ago today, I published the first DisBlueCircle blog post. I couldn’t have guessed what’s about to come. I spent a long time thinking my disability is something quite private, and that my experience in the world and thoughts about it are not relevant to anyone else, much less interesting or worthy of sharing.
Time after time, you proved me wrong. I was honored to talk about an idea for a post, a story or something else I’m currently considering. I was also thrilled to answer questions and receive feedback. Thanks for your support. You made me feel less frustrated and alone. I now think about accessibility problems as future blog posts… and am sure that there are more (of both) to come.
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A Fine Line
Between this blog, two thesis ideas and actually living my life outside of the internet or university, I’ve been writing and talking a lot about my disability lately. The more I keep on that, the more I feel as if there’s a very fine line between all of it being just enough – and realizing it’s too much.
As with most questions worth answering, there isn’t a clear answer or recipe to follow here. I feel that for me the real test is whether I still feel the I have something valuable to say, and whether it helps my peace of mind to get it out there. As long as these two things are both true, I’m happy with all my activities.
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Taking The Fall
I fell down recently. I walked around a corner while someone came from the other side. He didn’t see me and we bumped into each other. He immediately helped me up – even though I resisted, yelled and couldn’t figure out whether and how and I got hurt. I was left there, a bit stunned.
It served as a reminder of an important lesson. The thing about my falls is: it’s how I “take” the fall that matters, sometimes even more than the physical fall itself. I recover better when I have time to process the fall and ask for help myself. I feel as if the fall didn’t lead me or decided something for me – it was the other way around.
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Food
I haven’t posted anything in quite a while. I had a hard time coming up with topics. I was making a sandwich this afternoon when I realized the perfect topic is right in front of me: food. I tend to make a mess when I eat food that doesn’t fit naturally into bites. Also, since it’s difficult for me to cut things, I often prefer food that’s already well organized. That way, I can use only my strong hand and a fork to eat.
That’s why when I need something “polite” to eat, outside or with a stranger, I’ll often order a short pasta or a big-chunks salad. They’re all fork-ready, and allow me to concentrate on the conversation. But when I’m alone at home, I cook myself spaghetti. I roll my fork slowly and forgive myself for the stains on the shirt.
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Exercise
I’ve been excused from gym class in high school. Instead, I had to do an actual gym class – I went to the school gym, walked for 30 minutes on the treadmill and wrote it down in an Excel file. Every semester or so, I had to send the Excel to the teacher. That was it. I quickly developed somewhat of a routine around it: I had a pink iPod Nano, so I downloaded some podcasts and songs from iTunes, and listened while I walked. I specifically remember spending much time with Taylor Swift’s “1989” and the podcast “Serial”.
Well, it seems it is time for me to go at it again – turns out being a student with a disability in your 20s does not buy you a pass this time around. I must exercise, regularly, and do more than one kind of activity. Which one? And when? These are the more difficult questions. I used to love swimming, but it requires wearing a swimsuit, carrying an extra set of clothes around, and taking a shower in an unknown place. Running is not even a possibility. So while I keep eliminating, I might have to figure out where the closest gym actually is.
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Bars & Chairs
In light of the new year approaching, here are a few thoughts about what it takes for me to drink. To celebrate my return from Texas, I went out with friends. I love doing that – it’s a good way to catch up and let loose a little. However, as the universe has it, one thing always stands, quite literally, between me and a great night out, and that’s the dreadful bar chair.
I absolutely hate bar chairs. One has to climb to get on them, there’s always a risk of falling (which gets higher once I’ve drank), and they’re uncomfortable. Therefor, going out requires careful consideration: am I in the right company, so I’ll feel free enough to ask for help? How much can I drink, taking into account the complexity of the maneuver I had to pull to sit down? And so even when I’m finally drinking, I never stop thinking.
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Thanksgiving
Fall is finally here, and so is the fall break. I wander the empty campus wearing a hat and carrying a warm cup of coffee. Thanksgiving reminds me that almost ten years ago, someone told me to be thankful for my disability. It sounds awful without the context, so I have to expand on that a bit. As I understood it (and remember it now), he meant that I should be thankful for the way my disability has diverted my life from the regular course. I was furious. My disability have brought me much difficulties, suffering and hardships; What is to be thankful for?
I still am not thankful for having a disability. I don’t know what my life would’ve looked like without it, but I feel as at least some of my energy would’ve been directed to different things. I am, however, very thankful for the journey I’ve been on since I started this blog. I never imagined that people would be interested in what I have to say. I am thankful for getting to share and for being a part of the conversation. I hope this is just the beginning.
DisBlueCircle 