Guest Blog by Tuttleturtle
I am an AAC user. I am also queer and trans.
My AAC is part of my gender presentation. I have also never seen an AAC system represent someone like me.
Even so, I’m a privileged AAC user.
I’ve had access to education that taught me about gender and sexuality, even if it was informal. I have robust AAC that I can use to communicate about myself and who I am. Most AAC users don’t ever get robust AAC. I have never lost my legal rights to autonomy through institutionalization or guardianship. I have what I need to have this conversation, and it is not enough.
Our society assumes everyone is the same: straight, cisgender, and monogamous. It expects we will grow up, get married, and have a family with a husband, a wife, and children. Even with marriage being less common, there are societal expectations.
Except, I’m an AAC user. I’m disabled. Our society doesn’t believe someone like me can have a relationship. It certainly does not believe that I can be queer.
As AAC users we are somehow both desexualized as part of being dehumanized, and at the same time assumed to be straight and cisgender (having the gender we were assigned at birth). People assume we cannot understand sexuality or gender. But at the same time, they assume we must be straight and cisgender. The fact that this is contradictory doesn’t seem to matter.
Despite how people treat us, being an AAC user doesn’t determine your gender or sexuality. We can have any gender and any sexuality just like any other person. We can be trans. We can be queer. Many trans and queer AAC users exist.
I am an AAC user. I am also queer and trans. I knew that before I ever had the words to say so. I knew that before I had ever heard the words queer or trans. I knew that before I had effective means of communicating such concepts with anyone around me. I was still queer and I was still trans.
We talk about presumption of competence. We talk about how part of presuming competence is recognizing that people know themselves best. We talk about how presuming competence is important for AAC users, for people who have never been presented with a communication system that works for them, and for all people with communication disabilities. Why doesn’t presumption of competence get applied to gender as well?
Part of presuming my competence includes presuming I know my own gender. I am trans. If you do not believe me, you are saying I am incapable of knowing myself well enough to know my own gender, something inherently personal.
Part of presuming my competence includes believing that when I was a child who did not know the word trans — and as such didn’t have any method of telling anyone I was trans — I still knew myself. It means believing that child who had to actively think where to go when told we were splitting into “girls” and “boys” groups. Splitting into groups this way did not make sense to me, because I did not belong in either. Part of presuming my competence includes believing that my nonbinary reality was true, despite not having a way to explain or express it.
You should assume that people know themselves, whether they have ever been given the words to describe gender or any sexual orientations. You should believe that someone knows themself whether they need support to communicate or they communicate independently. You should believe someone knows themself whether they are an adult or a child. You should believe someone knows themself whether someone has been given any form of formal AAC at all.
Believing me that I know who I am should not be because I can write these words on a page. It should be because I am human.
Being AAC users, our autonomy is so frequently taken away from us, using the justification that our communication needs mean that people can do whatever they want for us. Being able to choose what to wear, how to cut our hair, whether or not to medically transition — these are privileges that so many AAC users don’t have, even though they are fundamental rights.
Even when we can communicate our genders and desired gender presentation, things like HRT (hormone replacement therapy) are often denied to AAC users. This is often both because doctors insist we cannot understand and consent, and because others too often have control over our decisions. Just because we communicate without speech doesn’t mean we cannot understand. People choosing not to communicate with us in ways that are accessible, and actively choosing to deny hormones, surgery, and other gender-affirming medical treatments, is denying medical transition because of how we communicate.
When others decide what we wear, or how to cut our hair, we are again not given a chance to have any sort of gender presentation that matches our internal self. We shouldn’t have to speak aloud, “I don’t want to wear that.” But our other communication methods are frequently ignored and called “behaviors.” We should have the choice of how to present our own body, and be given the ways we need to discuss this, whether pictorial, or simply providing extra time. But, when we’re denied this and the only method we have is throwing ourselves on the ground, that still should be listened to.
Trans AAC users should not be forced into clothing that makes them uncomfortable — on top of a body that makes them uncomfortable — because they cannot say “this makes me uncomfortable” in the “correct” way. We should be able to be comfortable with clothing and our bodies. We should have choice and control over what we wear and look like no matter how we communicate.
Even our AAC devices don’t represent us.
The words I use to describe my gender and my sexuality are not included in any symbol-based AAC app. Some have the word gay, but none of them can let me describe all of that I am nonbinary, trans, and genderqueer. That I have a neurogender, and am gendervague and genderqueer. That I am asexual, both demiromantic and otherwise grey-aromantic. That I am polyamorous. That I am m-spec, but neither bi nor pan feels quite accurate because of how being ace interacts with this. And overall, that I just relate to queer more than any other word.
And that is understandable, because I don’t expect everyone reading this to understand all of these words. But that does not change that, until I had this language, I would simply not answer any questions about gender or sexuality because I didn’t have any words that made sense to me.
I did not become queer when I was told queer people existed, or when I realized that might include me. I simply gained an option to communicate about something, about myself, about my identities. It was only once I had a way to describe myself with identity labels that I could go back and explain: my gender is not related to male or female, it is related to being neurodivergent and is not completely describable because of my neurodivergences. I do not feel sexual attraction and only have limited feeling of romantic attraction, but can be romantically attracted to people of any gender. And overall, I just like to use queer rather than try to go into details, because queer describes me best, but being able to go into these details matters.
AAC users need access to ways to describe themselves. We need to have words to describe genders and sexualities. We need to be told these words rather than have them denied because of the assumption we cannot understand. We need to have access to words about gender and sexuality in our AAC. We need ways to describe transition and queer coding and sex. We need ways to describe community.
This is true no matter what form of AAC people use; picture cards, PODD books, and other physical forms of AAC are frequently limited by being physical. Size and weight constraints mean only so many words can be available. Even so, there does not need to be the assumption we are cishet. High-tech AAC has greater capacity for words and symbols, but doesn’t take advantage of this, and we still are not represented.
We need a chance to see that we exist. That we are allowed to exist. And actually be able to exist and communicate about our existence.
Without the words, we can’t communicate about ourselves or existence. I needed to add words to describe myself in my symbol-based AAC (see image). But it isn’t just words. The choice of symbols also tells us we can’t exist. By only showing others and never us, we are erased.
What symbols are available and what choices we have make a statement about what our world and our communities have decided are acceptable. When those symbols don’t include us and our families, that makes a statement that we are not acceptable or cannot exist in the eyes of society.
When “marriage” has a picture of a male-coded symbol in a tux and female-coded symbol in a dress, that is a statement about what marriage looks like. When “they” pictures a group of people, that suggests singular “they” is not an option. When symbol sets don’t even have an alternative to a mother and a father for “family,” despite the frequency that families don’t look like this, that makes a statement about what families are supposed to look like.
Our symbols need to be able to represent us. It also isn’t just availability that matters; defaults need to be taken into account. Highly gendered symbols make assumptions about formats of relationships, and about people. These assumptions are forced upon AAC users.
These words and symbols matter specifically for queer and trans AAC users but they also matter no matter someone’s sexuality or gender. Having access to be able to speak about what is going on in the world and in your life is important. Having access to other people’s pronouns, and being able to correctly gender friends is important. Having access to discussing what you see, whether in the news or in fiction, is important. It is also important to normalize that not everyone is the same, and this is true for AAC users just as it is true for everyone. There is no reason to make symbols gendered by default when this is making them not represent all people.
High-tech AAC has the advantage — and the complication — that it can speak aloud. Speaking aloud means that it has a voice. That voice is your voice and that voice is personal. That voice also needs to actually be your voice, rather than something that does not feel like you.
Every person, no matter their age, disability, or the amount of support needed in going through the process, should get a chance to listen to voices and choose their own voice. That choice should be entirely their own, not coerced. Everyone has the capability to make choices, even if some of us need support.
Any voice can be a voice for any person – it is a question of what is the preferred voice, what is the most comfortable voice. Any voice can be a boy’s voice, whether this is a cis boy choosing a voice labeled “boy,” or a not-yet-out trans boy using the Queen Elizabeth voice. People can choose things that would never be selected for them by others. We can choose what we want.
It is important to recognize voice dysphoria. Some of us will choose voices that do not match our assigned gender at birth because it makes them more comfortable in their body. Others won’t be able to find any voices that represent us well. When someone chooses a voice that seems like an unexpected option, let them. Respect that choice, and take it seriously. When someone doesn’t want to use voice output, let them, and take them seriously. These people may or may not be trans and, either way, they should be respected.
For those of us who cannot find any voice that fits us well, including myself, we need more voice options. There need to be more gender-neutral or gender-confusing options for people who want to avoid strongly gendered voices. These need to be available for us, whether we want to avoid being gendered by them because we’re trans, whether we are questioning our gender, or whether we just prefer these voices. We need to be respected, even if we are showing discomfort while using a voice which isn’t quite our own.
You don’t need to know the details of someone’s identity and life to take them seriously, not make assumptions about who they are, and treat them with respect. You don’t need to know if someone is trans to avoid forcibly gendering them. You don’t need to know someone’s gender to help them find the voice they want. You don’t need to know someone’s gender to let them choose what to wear, including having been presented with choices that are traditionally associated with multiple gender presentations and multiple genders. You can provide people with ways to communicate what they want for how to present themselves, via pictures, items, or any other method that is accessible for this particular person. None of this requires knowing a gender. All of this allows us to be trans or not.
You don’t need to know someone’s sexuality to recognize AAC users have sexualities. You don’t need to know someone’s sexuality to teach about sexual health. You don’t need to know if someone is queer to provide access to media and representation. You don’t need to know if someone is queer to make it clear that you believe an AAC user is an adult, or will grow up to be an adult, and can have a relationship with the person of their choice. You don’t need to know someone’s identity to work on providing an accessible method of communication that includes discussion of identity, gender, sexuality, and relationships. You also also don’t need to know their identity to listen to how they communicate now, no matter how “behavioral” you want to label these communication methods. When someone is throwing their clothing and refusing to wear it, then listen.
It is important to listen to those of us who are queer and those of us who are trans. It is important to give us a chance to say things and a way to say things. It is also important to simply not assume that everyone who hasn’t said anything is cishet. There are people who are young, and people who have never been given the language, and people who have never been given any communication system at all. Every last AAC user, and every last nonspeaking person, is a person, and we each could be queer just like every other person. We should all be included.
Tuttle is a multiply disabled AAC user and part-time mouthwords user who lives in Massachusetts. They live by the motto “be who you needed when you were younger,” and have focused their life on improving the lives of disabled children. Previously, this included working in various tutoring and paraprofessional positions, subverting the system and teaching students how to actually live as disabled adults. Currently, this primarily takes the form of admining the Facebook group “Ask Me, I’m an AAC User!”