#AAC Awareness Month

October is AAC Awareness Month, and so far, I’ve been mostly reading.  And thinking.  Especially about posts like this one by Alyssa at Yes, That Too.

Alyssa’s post caught my attention particularly because, as she puts it,

…I am in two categories where people tend not to think of AAC: adults, because who ever thinks about disabled adults who are off doing adult things while also acting disabled; and people with some (in my case quite a bit of) oral speech.

The reason this catches my attention is because I am an adult who is off doing adult things, and also a person with quite a bit of oral speech.  But I am also increasingly aware that my oral-speech abilities are chronically overtaxed.

For me, mouthwordmaking is very much like my hypermobile knees: yes, mouthwords do most of what I need them to do.  Yes, I can talk (and walk) more or less like “normal” people my age in all the expected contexts and for all the expected reasons.  But the point at which I should stop doing that actually occurs much sooner for me than it does for “normal” people.  Every day, I hit that point.  And I should stop going when I hit that point, because to go past that point I have to put improper pressure on the system, resulting in improper function – and, in both cases, increased “mistakes” and a chronic and ever-increasing risk of total system breakdown.

But I don’t.  Because to stop pushing the system past its limits, to stop meeting social demands that I walk and talk “as expected” for a person of my apparent age and -bodiedness, gets unnecessary and unwanted attention.  For most of my life, it has been more worthwhile to me to put chronic and unnecessary strain on my own systems than to deal with the approbation of a world that demands abled performance (and performativity).

In fact, until I read Alyssa’s post, those same performative demands had made me assume AAC wasn’t an option for me.  Not really.  I have an AAC app on my phone, but I have never used it.  I’ve learned a fair bit of ASL for times I don’t have words, but I rarely use that, either.  Even though I’m aware “alternative” means are available to me, I go on chronically overloading the speech-system.

Ironically, I’m kinder to my knees than I am to my speech center.  When a series of illnesses and medication reactions left me ataxic and mostly-bedridden from 2007 to 2011, it took me about a week to start walking with a cane and about four days to become a staunch advocate for mobility aids at any age.  To me there is no such thing as being “too young” or “not disabled enough” to need a mobility aid: if it makes it possible to live your life more closely to the way you want to live it, use it!

Yet when it comes to using an AAC device – which would make it possible to live my life far more closely to the way I want to live it in terms of communicating more effectively – I balk.  My colleagues all see me as A Person Who Can Talk At Will, and I don’t know how to navigate not-being that person.  I have no idea how to answer questions like “What happened?” and “Why are you using that?”  I have no ideological objection to giving the truthful answers: “I’m autistic” and “I realized I could communicate more easily this way.”  But I have a deep emotional terror of being Odd In That Way.

I don’t remember having any such terror about using the cane, which makes my recent reading of Robert McRuer’s Crip Theory even odder to me: compulsory able-bodiedness didn’t terrify me the way compulsory able-mindedness does.  I didn’t, and don’t, give a crap if my body appeared Odd, since I can demonstrate at a moment’s notice that my brain Works Right.  But there is something much, much closer in not-talking to suggesting “Hey, my brain doesn’t Work Right.”

(Except it does, and the point of not-talking is to help it work even more right.  But I’m so afraid of transgressing the rules of abledness performativity that I’m willing to function less well in order to continue reassuring others that I function acceptably well.  This is why I keep repeating the word “ironic.”)

Perhaps the most disappointing part of all this, for me as an academic, is that for the past several months I have been deconstructing the concept of “speaking” as it relates to autistic people, our portrayals, and how “interventions” and “treatments” are approached for us by non-autistic parents, teachers, scientists, and the non-autistic world at large.  I am, academically, well well aware that “making mouthwords at all costs” is not only an illusion, but a delusion; that there is in fact no “there” there when it comes to claims that mouthnoise “speech” is superior to other forms of communication in any way, for any other form of communication can be demonstrated to be “superior” to speech in any way attributed to speech.

(Derrida himself works through this problem in “Of Grammatology“, though I doubt his explanation is any clearer than the one I just gave.)

So, yes, I’m aware of AAC.  I’m aware that using AAC would make my life considerably easier.  I’m aware that my adoption of AAC into my range of communication tools would also make the lives of other AAC users easier by creating one more “point” at which people I interact with could get used to AAC use as just another form of communication by real, concrete humans they actually know and trust.  And I’m painfully aware that my own theoretical and ethical positions conflict with my own fear when it comes to incorporating AAC use into my own life.

So what now?  I sit with it.  I sit with the painful awareness, and eventually the pain and I will process ourselves into something less painful and more productive.  Like any other painful awareness in my life, the only way out is through.  But I would gratefully accept thoughtful, informed advice.

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Why “Sorry” Isn’t on the List, Sorry

For reasons partly explained elsewhere, I’ve started compiling a list of useful ASL words and phrases for when I end up nonverbal in public.  Since putting together that initial list last night, I’ve thought of a few more signs that belong in the “core” vocabulary, including “yes/no,” “pain,” and the alphabet.

(I also owe Dr. Vicars a significant and personal thank-you, since I’ve been relying on the Lifeprint lessons almost exclusively to build these core vocabularies.)

A sign I considered putting in the core vocabulary but then deliberately omitted is “sorry.”  It’s not that I don’t think “sorry” is a useful concept, or that I don’t need to know how to communicate an apology.  It’s that I need to get “sorry” out of my own core vocabulary.

I was raised in a household where the answer to everything wrong in the world was guilt.  If we could guilt ourselves strongly enough, we could eliminate any and every potentially hurtful behavior.  As much as I disliked the “Divergent” series, I have found it useful at times to tell people I was “raised Abnegation.”  The fact that Emma’s parents emphasize her self-advocacy skills in posts like “Emma Refuses to Get Off the Bus and a Self-Advocate Is Born!“, and that increasing numbers of parents of autistic children are emphasizing their children’s advocacy skills gives me so much hope, because nobody ever emphasized mine.

I have long believed that if I can say “sorry” big enough, often enough, strenuously enough, I can make up for imposing the inconvenient needs of my autism on the world.  The fact that these needs only become “inconvenient” in the first place because I live in a world not designed to accommodate me is, to the guilt-trauma center of my brain, irrelevant.  I’m the screw-up, the defective one, the freak.  I’m the one who needs to say “sorry.”

No.

“Sorry,” verbalized, has become an autonomous response to my own distress.  It bothers my husband to no end.  I’ll have a meltdown and sit there, rocking and repeating “I’m sorry I’m sorry I’m sorry” on an endless loop; meanwhile, he feels frustrated and helpless because I’m so busy apologizing for my needs that I can’t tell him what my needs are.

And that’s why, in developing an alternate vocabulary for the moments in which I have the most need, I am deliberately omitting “sorry” from the front line of communicative options.  My needs have to come first.  Apologies, if necessary, can come later.  But I cannot advocate for myself if I cannot stop apologizing for myself.