One thing I’ve always known is that I want to have the biggest world possible to grow into exploring –which relates a lot to my hearing, since not being able to do that is something that’s typically seen as making your world smaller than most. Disabilities are supposed to “disable” you; I used to refute that with a clear-cut anger (clear-cut anger is easy when you’re a teenager) and tell the world I didn’t need any of its help, and that worked for a while, but now the picture is more complex, because in addition to developmental theory and curriculum design and the history of American engineering education, I’ve also been learning a lot about how small a world I’ve drawn myself into through insisting on absolute independence and no hearing assistance, ever.
I thought my coping-with-audio skills were great. Okay, I needed to feed More Brainpower to the processor, but… I had extra cycles to spare, right? Smart. Tons of energy. That’s all I needed to pay the deafness tax.
Yeah, no. What I actually have are “coping-by-avoiding-audio” skills. I am the one who cuts myself off from the world. Reading books instead of listening to lectures, having conversations online instead of in-person… it worked in a small 300-person school, it worked when I was a software engineer working on distributed teams, it works when I stay away from people. Academia… has people. Talks. Hallways. Conversations you’re thrust into out of context. Business does, too; meetings that aren’t always transcribed, phone calls I can’t keep up with… and once again, I can’t get out there — I’m in the back, I’m on the sidelines. And it’s frustrating, because I’ve been in non-audio versions of the same situations and kicked ass, so I know it’s not a lack of intelligence or ability on my part (as I assumed before), and I know I could contribute if I could only understand, and… why can’t I understand?
Oh, yeah. I can’t hear.
So what do I do? I don’t want to be frustrated like this forever. I can stay in a small world; teach at an online university, at a small school with tiny class sizes, avoid seminars, stay in a tiny circle of people I already know at conferences (good grief, how many of my social interactions have been slow and shy because they’re just so hard?) and… cope. Be normal in a smaller world? That’s not satisfying. (Case in point: dear 14-year-old me, being afraid that something terrible will happen to a kid because you can’t hear them crying is not a good reason to swear you’ll never have them; there are plenty of good reasons not to have children, and maybe you do have others, but that is not one of them.)
So I’m figuring out this whole thing with hearing aids, and transcribing, and maybe interpreting, and relying on external equipment and services that can always not-work. This was made painfully clear to me in class this afternoon when my microphone for CART threw a tantrum for the first hour and I had to choose between struggling to fix the mic and definitely missing the presentation, or giving up on CART and struggling to lipread the presentation. (I missed the presentation and fixed the microphone, but I now have no idea what Farrah’s paper was on. I’ll ask her later.) Do I want to assume my “helper” things will work, plot my ability to participate and my level of performance based on them working, and then take the risk of falling short if they don’t, or is that a dumb way of getting your hopes up?
Is your world bigger and more full of possibilities if you find ways to go all places your way, on your own effort, even if it means it’s terrifically hard and exhausting and you’ll never experience those places in the same way as other people? Or is it bigger if you allow other people and things to help you, to take advantage of assistive technology, knowing that it’ll bring you to places in a fuller way where you can use more of your own energy to Do Things instead of Struggle To Hear, but also knowing that you’ll be stranded if it fails?