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Tuesday, August 20, 2019

My AAC isn't for you

I've been a part-time AAC user, for I don't know how long (sometime around a decade using dedicated apps is my best guess), and yet many people in my life had managed to overlook, forget, or ignore this fact, because they didn't want to see me as such. To them AAC was for others, not for someone who communicated like I did (the fact I tend to spend multiple hours a day unable to use mouthwords aside, that isn't convenient for those who want to judge on the mouthwords you do produce, or how "articulate" your writing is.

This is relevant at the moment, because right now they can't ignore my AAC use. Back in May, I got a concussion, and I have had post concussion syndrome. While others around me have been stressed out, thinking about how hard it is not to speak, I haven't found there to be much of a change. I use my AAC - I have always had it with me anyways, I've used AAC regularly anyways. I use ip relay to make phone calls - I can't pick up the calls made to my cell phone unless I want to try to handle it on speakerphone and responding via typing on my tablet, but making calls is fine, and I had relay and used relay before. I have not added anything to my toolbox, using AAC full time for the past few months, I just use it more regularly. The only difference is in how people see me.

Because before, others wanted to deny that I was using AAC, and now they can't. Now when they are trying to deny, what they are trying to say is that I will be "fixed", I will go back to "normal speech", ignoring that I never had normal speech, and they are finding they can't do that. So how others around me see me keeps morphing, changing, with them realizing things that have always been true, with them trying to make me out to be what they want me to be, realizing they can't, trying to force it anyways, it failing again, over and over again. None of this is about me using my AAC, none of this is about what I need to do, or what I can do. It is all about the expectations that speech is default, the expectations that speech is preferred, the expectations that part-time AAC doesn't happen.

And these expectations of others, keep returning to trying to make me into what they want, more than anything else. They want me to speak, not only because it is easier for them, but because that makes me fit into their world view. Someone who teaches is someone who speaks, not someone who uses AAC. I shouldn't be an AAC user. Someone who they turn to for advice shouldn't be an AAC user (but who better to know about AAC than AAC users, people are the experts on themselves). I am not who they want, who they expect, who they see as who should be, an AAC user. That is too other. I am not supposed to be that visibly disabled.

The only reason I am not always that visibly disabled is because I am erased over and over and over again.

These expectations keep returning to people wanting to make me into someone who speaks for them, not for me. Not because it is easier for me. Not because it would make my life better. But because it would be easier, nicer, more pleasant, for others. They say as much. Directly.

My communication isn't there to make others comfortable. My communication is to let me communicate. My communication is how I want to communicate. My AAC is for me. And I don't care how much me having used AAC for a few months makes people uncomfortable, it has been easier to communicate in some ways than it has ever been in my life. And while I do want to speak again, and do want to be a part-time AAC user, not a full-time AAC user, my AAC use or non-use choice is not about others comfort, its about how easy things are for me. It's about how I can communicate what I want to communicate. It's about my life, my choices, what helps me. Not about being seen as disabled by people who somehow manage to pretend I am someone I am not.

1 comment:

  1. I so appreciate hearing your perspective. I have some friends who use AAC and I believe will relate to your words.

    ReplyDelete