For someone who hates tooting their own horn, asking for help, making trouble for others, and so forth, my adventure-into-hearing-aids has been a huge exercise in deliberate practice of a set of skills and attitudes that I'm terrifically underdeveloped in.
Example: please justify why hearing aids will assist you in obtaining future employment.
My future job as an academic will require me to constantly use communication skills at a high level; I'll be directly evaluated on oral presentations of my research at national and international conferences, expected to lecture to students on a regular basis, and also expected to participate in conference sessions, meetings, etc. which are largely based on oral discussion. I'm getting hearing aids to help me communicate at the level I need to be competitive.
Competitive. Not just "coping." When Mirabai and I hung out last week, I thanked her for helping me see assistance as something that could lift me above awesome instead of things that always brought you to the level of "average." With that old (and more naive) mindset, assistance made sense for "disabled people" who "couldn't cope on their own" and would perform "below average" without help, but not for (arrogant, hubris-inflated, younger) me, who could perform above average without help, thank you very much; why would I take assistance that would knock me down to average?
But no... the point of accessibility isn't to "make you average." It's to lift you up from where you are to where you could go. It just means that if "where you could go" is very high -- if you plan on going fast and far and doing amazing things -- you need to be sure that your access providers can keep up with you. (Ye gods, I hate how arrogant that just sounded, but I... I can't think of a better way to phrase it.) They'll become part of my posse, the same way I might hire an accountant or a lawyer someday.
MEL SMASH! WILL BE BEST MEL POSSIBLE EVAR! PLANS ON CHANGING WORLD, NOT JUST LIVING IN IT!
I'm so used to feeling guilty for asking about things because then I feel like I need to prove that I 'deserved' whatever help I got, and I don't like going "hi, I need your help to get up to a basic level of functionality because I'm broken enough that I can't make it otherwise," but as we discussed earlier, that's not an accurate picture. The more accurate picture, I think, is:
I'm Mel. I'm performing rather well right now by normal-people standards, going purely off my own guts and grit and smarts -- I'm pouring my creativity and energy and intellect into compensating for my disabilities so well that they're almost undetectable. As far as most people are concerned, I'm already a success story -- I don't "need help."
And... I don't, not if my goal is to perform at "normal" levels -- I can get and keep a job, be a functioning member of society, and all that. I don't need help for that.
But if you look at this picture, you'll see that I could be doing so much more. Imagine if all that energy that goes into compensating and covering up my disabilities (geez, I hate that word, but... I can't think of a better one, so I'll use it) could actually go into moving forward with my work -- my research, my teaching, my technical development, all the things I'm doing to make the world a better place. You can see a preview of it -- even with all the compensations I've had to make over the years, I've managed to do some pretty amazing things at a young age. Imagine if I had more resources and energy to take that sort of thing farther. Imagine if I could be thinking about solutions to problems other than "how do I keep up with lipreading this person?" or "how do I participate in this meeting when I can't understand the other people on the conference call"?
That's what these assistive efforts are trying to unlock -- that sort of potential. Because right now I'm "pretty good." But if we got these things out of my way, I could be awesome.
It's going to be a rough ride at first. I've been coping on my own for so long that I don't know how to use assistance; that's going to be a learning curve to climb. Once I learn how to use this assistance to get me the same level of functioning I've been bootstrapping myself into, I'll have all this freed-up capacity that we'll have to figure out how to transform from "coping" energy to "moving-forward" energy -- and that'll be a tall order as well. I'm not used to having so much wherewithal available to me -- I'm used to running forward with a fraction of my capabilities because I need to use so much of my energy to pay my "disability tax." We're talking about rewiring the way I breathe, move, think, live. It's going to be cognitively difficult, and it's also probably going to be emotionally difficult because I'm used to being so self-reliant. It will take a while.
But I'm young, and I'm still at the beginning of my career. So if we figure this out now, we'll reap the benefits for the entire rest of my life.
That's why you should care, people-who-work-with-disabled-folks. (And whether you specialize in access or not, to work with me is to work with a disabled person.) That's why you should help. That's why you should keep reminding me about this, that the extra time and trouble is worth it for someone who's seemingly already "doing fine."
I'm a teacher at heart: if I had a student who was doing "fine" with solid C's in my classes, but I thought they had the potential to shine, be an A+ student, be one of my best -- I would be pushing them to do this. I would tell them they owed it to themselves and to the world they could grow up to change. And if I would ask my student to go through that, I need to be willing to go through it myself.
It's going to be hard for me to remember this and keep pushing on it, so I'm going to need my friends to keep on advocating for me and to push me to advocate for myself, to remind me why this is worth it, to chide me gently when I start feeling guilty for asking about this -- I wouldn't feel guilty about unlocking someone else's awesome for the world, so I shouldn't feel guilty about unlocking my own. The road we're going down is a long one, and probably won't ever end.
O brave new world, that has such people in't! I've met some amazing folks in the past few years when they've come into my text-based, online space, and I want my passport to live in the bigger worlds where they are -- not just live, but blaze new trails, change the bigger world where they are for the better.
Time for me to get my visas.