[Weave Chat]:
שָׁלוֹם , y’all. Hallo allemaal. 大家哈。And 感谢。¹
[Proloquo4Text]:
I genuinely appreciate the introduction you gave me, Esther.²
Today, I am presenting as a neurodiversity activist-cum-AAC researcher about innovation, inclusion, and advocacy in AAC. Inclusion makes me ask who is doing the inclusion and who is, all too often, expected to perform gratitude for a seat at what should be their own table. So I am drawing on Kassiane Asasumasu’s Autistics Present talk of a parallel title to say AAC users deserve more than crumbs.
I am adapting and reprising it to say AAC users deserve more than crumbs, because we are getting crumbs, and we deserve better whether it’s about our specific disabilities, the supports we need, or both.
So what is a crumb? A crumb is a nod towards inclusion or tolerance that still does not treat us as full people and equal partners. The whole brownie is when we get to be real human people who do things for real human reasons, with all our sources of knowledge taken seriously, in roles that match our knowledge, with the decision-making power to back it up.
Current communication access is crumbs at best. Estimates keep coming back to say about one person in ten who should have access to aided AAC actually does, or about one person in ten who should have access to aided AAC has been properly evaluated for it.³ People who need AAC but don’t have access, or don’t have enough access? One, deserve full access, and two, deserve to be treated like real human people who do things for real human reasons, not just to feature in rhetoric about presuming competence.
On top of that, those one in ten estimates miss broad segments of people who should have the opportunity to see if AAC helps them. One of the A’s stands for augmentative, after all, even if I don’t think all part time AAC use fits nicely into augmentative or alternative. Which points to the very acronym as possibly a speech-centric crumb. Augmentative to what? Alternative to what? Do we need to consider the ‘it doesn’t stand for anything anymore’ approach that TASH and The ARC took for AAC itself?
But back to access. The AAC we have access to may well be a crumb anyways. PECS?⁴ Is crumbs. A grid of two or four words? Is crumbs. Hesitant inclusion – or frank exclusion – while learning motor planning on an insufficient system? Crumbs. Enforcing fully speaking neurotypical language norms? Ranges from flatly inaccessible to crumbs. Whether it’s the prioritization of speech output, the discouragement of pointing and leading when they work – or would work if people admitted to understanding all communication they actually understood⁵ – it’s crumbs.
We deserve better than for AAC to be considered a stepping stone to speech. We deserve for the fact that AAC on average leads to more speech specifically alongside better communication overall to be an interesting factoid only relevant to people who, in the absence of external pressure, would still like to speak more, not a regular rhetorical justification needed to get people AAC at all.⁶
One group recently found there was no satisfactory self-report measure for access to communication.
We may, as people, know that communication always has at least two sides and thus any communication problem has at least two sides. But our ways of measuring communication are all too often about the perceived skills of just the one disabled languager who does not have adequate access to communication. And that any evaluation of a person’s so-called communication skills is at least as much an evaluation of the match or mismatch between their communication access needs and their current communication toolbox. Or an evaluation of how willing the evaluator is to even consider the possibility of their competence.
Every single currently extant funding mechanism for AAC is also crumbs, because of how it requires professional certifications that themselves require speech, because of the ways people have to pathologize us to get us access, because of the ways devices have to be locked down to be given to us at all, because of the people who are locked out because of being too disabled or not disabled enough.
People who can’t get AAC covered under those crumbs of extant formal funding deserve better than crowdfunding campaigns and charities that have to plaster their stories as advertising in the hopes that inspiration porn will bring in the money.
And once – or, let’s be honest, if – we get access to robust, aided AAC?
Support for multilingual AAC? More crumbs. On a technical level of saying all the words correctly, my best option for code-mixed utterances involving both English and Chinese is an app that doesn’t even claim to support Chinese.⁷ On a user experience level, of course, trying to use a grid-based app that doesn’t claim to support Chinese as a typing-based user of Chinese and English is absolute shit. Not actually the fault of any particular system that doesn’t even claim to support my languages, but still crumbs. And my language pair here is the current imperialist lingua franca and the official language of the world’s second-most populous country. There are language pairs that are served better – but notice that I’m saying pairs, not trios, quadruples, or sets of arbitrary size. Let’s not even get into AAC voices that sound like plausibly the same person across two or more languages. Which probably affects the extent to which multilingual AAC users identify with our AAC voices, but how much research on multilingual AAC deals with the perspectives of multilingual AAC users?
As an aside, I might theoretically be able to make personal voices for some, but not all, of my languages – but then it would sound like my speaking voice, which I don’t actually want. I use male voices for gender reasons because truly androgynous ones aren’t available for AAC.⁸ We deserve better than needing to decide which sets of problems we are more willing to put up with.
Even the work addressing what people supporting multilingual AAC users need and their attempts at designing things for us are crumbs, for them and for multilingual AAC users alike. Not even because the published work on it is bad itself – because it’s trying to work with technology that is often so far from what’s really needed.
The people supporting us need more than crumbs too. And to get them to the whole brownie, they’ll actually need to know what it is we want as AAC users. Neither multilingual AAC users nor our supporters – nor any AAC users or our supporters – can actually reach a full brownie while any of us are struggling with monolingual, monomodal ideologies and crumbs.
And at an organizational level?
Every organization that listens to one AAC user – or claims to listen to one AAC user, but picks one who rarely if ever argues with them – and claims they have done their representation duties, is handing out crumbs. Or one crumb, as the case may be. Every organization that claims to be for us, but where there aren’t enough AAC users in leadership positions for us to have veto power if something is bad enough for all of us to agree it’s a problem, is handing out crumbs. Demand the whole brownie. We deserve the whole brownie.
And yes our families have important voices, but they are not and cannot be a substitute for AAC users ourselves.
So we deserve better than call after call for research advertised as wanting to know about the experiences of AAC users but actually recruiting the people around us as participants. Our supporters matter and also need more than crumbs – but they are only us when we are literally also them. Anyone claiming our supporters are a substitute for us is either looking to lock AAC users out of conversations about our own lives, looking to make AAC users and our families fight over the crumbs we’re both dealing with, or both. Team up and take their brownies instead.
If an organization’s AAC users are all similar to each other in a way that isn’t clearly a result of the organization’s remit – it’s fine if the Autistic Self Advocacy Network’s or the Autism Women and Nonbinary Network’s AAC users in leadership are all Autistic, but it would be a problem if ISAAC’s AAC users in leadership all had the same diagnosis – then some of us may get whole brownies but too much of our community is still being handed crumbs.
Demand the whole brownie for all of us. We all deserve the whole brownie.
Every indication of a binary between people with expertise and people whose support needs are, well, called support needs if they’re even recognized as being needs? Means we are dealing with crumbs.
Talk about inclusion but have a clear idea of what roles we can or should hold, especially one that doesn’t include leadership or having a fully speaking person actually answer to an AAC user, both on the org chart and in practice? Crumbs. Explicitly write requirements for some positions that mean AAC users inherently can’t be considered qualified? Even if AAC users are hired in other positions, crumbs. Pigeonhole AAC users into PR positions where we can’t make real changes? Crumbs. No matter how great the AAC users in those positions are, crumbs crumbs crumbs.
Guide us into lower-paying self-advocate positions that don’t require the credentials or experience in the field we may have? Crumbs. Even if some of us are in positions that use, require, and compensate us for our actual credentials and expertise, that’s the exception not the norm. Keep us in the token self-advocate or community partner slot indefinitely rather than supporting our access to the training to become the researchers ourselves and the funding to run our own projects? Crumbs! Make assumptions – in any direction – about which skills we’d like our collaborators to teach us to do independently, help us do with support, or simply remove from our plates? Crumbs! React with surprise or incredulity when an AAC user is in fact an AAC user and needs supports even when we’re hired for our qualifications rather than into a token self-advocate slot? Crumbs!
And an organization getting it right for one AAC user can still hand out the crumb of a token self-advocate position to another – demand the whole brownie, not just crumbs, for all of us. We all deserve the whole brownie.
Ask how to better include us while making it clear in their survey design that they haven’t considered how to let the AAC user-professionals and AAC user-researchers we already have accurately answer the questions from all their roles? Crumbs! Instructions on what parts of ourselves to leave out are not a solution there. They are a declaration of intent to continue providing only crumbs, losing only the plausible deniability that they didn’t know they were demanding we cut parts of ourselves off for their idea of inclusion.
Ask for life stories – ask us to be self-narrating zoo exhibits – rather than whatever it is we want to make known, synthesized because we can in fact understand the key lessons of our own lives and may even know things beyond our own experiences with AAC? That is, in fact, a crumb. Even when life stories are what we might have chosen, because memoir is a real genre and autoethnographic methods have their own journals, it is still a crumb whenever the people with the power in this field decide that a self-narrating zoo exhibit is what they want, rather than giving a real choice.⁹
So ask yourself – how many presentations by AAC users have you attended that aren’t us telling our stories – and often sanitized stories at that, with an abled parent or professional who believed in us taking the protagonist spot even in our own stories? And of them, how many were introduced accurately, rather than implied to be about our experiences when they were really about our expertise? I sure hope the answers aren’t zero; I’ve attended several. But how many have you, personally, found and made time for?
How many do you think have been rejected for being “too” anything that is presumed not to be appropriate for the infantilized? Because queer and trans AAC users have had to protest about that before. Gender presentation, apparently, is too risque. And when an AAC user does get to give such a presentation, we deserve better than questions that are about anything, everything to do with our life stories and nothing to do with our actual presentation topic.
Warm fuzzy feelings are crumbs. Teaching a feeling of empowerment is either a crumb or a lie. Actual power, and nothing less, is a brownie.
There are some whole brownies in the AAC field. The recent special issue of the AAC journal where every article was either solely or jointly authored by AAC users? From where I’m typing, that looks real for the AAC user authors. Maybe not for every citation of work by AAC users, but I think the AAC user authors got their full brownies and not just crumbs.
How people use what’s in that issue is yet to be seen – and I wish I could be more optimistic about it than I am.
Unfortunately, I know the most common way AAC for speaking autistic adults: overview and recommendations gets cited is to say AAC helps nonspeaking autistic children. It is also regularly misrepresented as being about my experience as a part-time AAC user. The paper might not have changed much in its content had I included my own experiences rather than intentionally avoiding them. But I did, in fact, intentionally avoid them. If you want my story, try “Am I the Curriculum?” and prepare to be at least as uncomfortable as you are right now. So every experience I discussed in AAC for speaking autistic adults, whether I share the experience or not, references someone else. I seriously considered avoiding an entire book as a potential source because I’m also in it.¹⁰ So when people call that about my experiences as a part-time AAC user, if they manage to remember it’s not about nonspeaking children? It puts a serious damper on my confidence that the AAC user-authored research in the special issue will get cited in ways that indicate attention to the words we actually wrote.
So fully speaking researchers and professionals? Call proving me wrong my challenge for you. I don’t mean telling me anything – I mean prove me wrong, with evidence. Actions. Agree or disagree, engage like you paid attention to the actual content of what we said – and to the places where we don’t quite agree with each other, too.
But the special issue itself? Call that our new medium point. A high point would need AAC users as guest editors and peer reviewers– maybe get one of us in as editor in chief. As for the symposium that led to the special issue? At least half the presentations came from AAC users or teams with AAC users, and we learned almost no-one knows how to handle tech for a live, in-person panel with multiple AAC users. Congratulations. That was real, and that’s our new floor.¹¹
Go forth and demand your brownies, not just crumbs.
Dr. Zisk out.
