I’m in Vermont right now working through my ten-day residency. It’s exciting to be back around writers again, and take in all the things my brain can hold. We have long, intense days, beginning early and lasting until 9 or 10 at night. My schedule has become my lifeline. It’s all I can do to try to eat when I’m hungry and sleep when I’m tired, and I am tired all the time. And this is how residency is, and mostly, it’s great.
The not-great part is that on top of all my other learning, I’m learning to navigate a new campus. And, because of that, I am way more dependent on everyone than I like to be. And because I am way more dependent on everyone, I’ve become somewhat one-dimensional: I’m the one who’s blind and needs help. People all the time, having nothing but good intentions, approach me and ask if I need help. Sometimes I do, and it’s appreciated, but there are many times when I yearn to do it myself, even if it takes a few extra minutes, or when I don’t need help at all.
It’s hard to explain to those who don’t get the “do you need help?” question constantly, but being asked that several times a day is exhausting. You play a little game each time you are asked: what should I say? Do I say yes, just for the comradery and to have someone to talk to? Do I say no because I want to show my independence? If I say no this time, will they not ask next time when I might actually need help? Have they helped me before? In fact, have they already helped me a bunch today and really shouldn’t be expected to help me again?
When I stop to think about the conversations I’ve had in the last few days, I am astounded at how many of them revolve around what I am doing or not doing, and whether I need help doing it. I’ve heard, “what do you need?” so many times when I’m idling to look at my notes or my schedule or just to take everything in. Most of the time, I don’t know what I need, or it’s a long list that most people can’t help me with, and many times I don’t need anything. Being asked over and over continually puts me on the spot, in a fight or flight stance, even though the intentions behind the asking are nothing but good.
Today, I had someone yell across campus to me: “Do you know you turned the wrong way?” This person didn’t have any idea where I was going. So how did they know I was going the wrong way? I called back that I was fine, then wondered if they continued to watch me as I navigated to where I wanted to be. When I refuse help and the person doesn’t immediately withdraw, I wonder if they are watching me, thinking how much easier it would be if they helped, how much faster and more efficient. I know I have done this before, too. But sometimes, most times, I want the agency to take longer, to do it my way that’s maybe, probably, not your way. When you’re in my situation, you can certainly do it your way.
What I miss most in these ten days is just being able to get away. I want to walk uptown by myself to the co-op, or the crepe place I went to last fall. I want to find a café and listen to people around me, not talk to anyone in my program. If I want to leave, though, I have to find someone to help, and coordinate schedules, and feel obligated, somehow, to return the favor. I hate that society has ingrained this tit-for-tat idea into me. I hate how hard it is for me to accept gracefully, without worrying about the payback.
I’d ask folks who interact with people with disabilities, or want to help those who might need it, to consider the circumstances before offering help. Don’t just offer willy-nilly, and do be prepared to be told no, thank you. Try not to bring your ego in.
I think what I want most right now in the world is to have a genuine conversation where my blindness or my dog are never mentioned. Or, to take a walk by myself away from the campus and away from everyone, just for a few hours of receiving no help at all.
“Most of the time, I don’t know what I need, or it’s a long list that most people can’t help me with, and many times I don’t need anything. Being asked over and over continually puts me on the spot, in a fight or flight stance, even though the intentions behind the asking are nothing but good.”
THIS. I so relate to this. *sigh*