To Include Us in Our Own Worlds: AAC is Not Optional

Abstract

AAC as a field, a category of technologies, and a culture has advanced tremendously and rapidly in the past 40 years, yet the vast majority of people who cannot rely on speech alone to be heard and understood still lack meaningful access to effective communication that meets their physical, emotional, social, and cultural needs, and fulfills the civil and human rights to which they are entitled. The following article discusses some of the underlying reasons for these access gaps, but more importantly, highlights their devastating effects: an entire disability community subjected to repeated, pervasive, and often lifelong trauma. Indeed, many of the “challenging behaviors” traditionally considered inherent to certain communication-related disabilities may actually be the result of communication deprivation and its complications, including lifelong experiences of ableism, abuse, and violence against which one has no recourse. With so much at stake, it is crucial that AAC researchers learn from the words of those of us with access to the tools we need to share them, towards the shared goal of a world where that access is ubiquitous.

I’m an autistic, multiply disabled crip¹ with some access to speech, and I communicate most effectively by typing on a computer keyboard. The written word has been my home since childhood, but has become even more precious to me after multiple bouts of autistic burnout decreased my access to reliable and understandable speech, and as my degenerative illness progresses, causing neurological damage and expressive aphasia. Working with CommunicationFIRST, a cross-disability, disability-led nonprofit organization in the United States (US) dedicated to protecting the civil rights of people who cannot rely on speech alone to be heard and understood, I am acutely aware that my access to communication may be a human right, but it is nevertheless one that precious few of us enjoy.

Not even fifty years ago in US history, people I call family—people who did not have access to reliable, sufficient, and understandable speech—were removed from their communities as a matter of course to be placed in carceral institutions, where they were often denied not only community living but also adequate living conditions, autonomy and agency, and access to communication. Countless people died in these institutions without ever being able to express themselves.

Since then, there is much to celebrate: vastly more disabled infants and children surviving to adulthood and old age through modern medicine; technological advances enabling portable, robust AAC; and the right to supported community living acknowledged by the Supreme Court of the United States, for example (Light & McNaughton, 2012). Yet for all of these advances, meaningful change simply has not happened in the lives of many who need AAC. Existing AAC systems often lack crucial features that would make them useful to and usable by people with a wide range of disability-related, social, cultural, and linguistic needs. Ableism, the social invisibility of people with communication disabilities, and a lack of training and support make it difficult for people who use AAC to live their lives in both public and private settings. Access to AAC is limited by both this lack of awareness and by traditions of ableism that dictate who is capable of thought, and whose thoughts are valuable enough to listen to. This issue of access impacts most profoundly the people who are, to this day, still placed in carceral institutions, still denied their human rights, and who still, all too often, live and die without access to communication. None of these issues exists independently of the others, and each one contributes to a horrific reality: nearly every single person who cannot rely on speech to be heard and understood is a survivor of trauma.

The good news is that none of these realities are hopeless. AAC researchers, speech-language pathologists, and others who wish to improve the lives of those of us with communication disabilities are in a perfect position to, and indeed have a responsibility to, research, understand, and implement solutions that will meaningfully and durably improve our lives and our access to human and civil rights.

Disability-related Accessibility

Though not all people who need AAC have cognitive limitations, many do. We may struggle to read or to think quickly, easily, clearly, or normatively, for reasons ranging from dyslexia to low literacy to dementia to brain fog. Images and design are powerful tools for enabling communication, but they will fall short of their full potential without input from the people who are using them all day, every day to decide how they want to say what they have to say. To discover new and helpful ways to visually orient the speaker, organize language, and respond to context, researchers should engage AAC users in regular cross-disability conversations to better understand the nature of the obstacles we come up against, how we circumvent those obstacles (or how we would like to), how we use our AAC when talking to different conversational partners in different real-world settings and contexts, and other tidbits that cannot simply be guessed at or assumed. Disabled people of all stripes have a long and beautiful history of figuring it out, and people who need and use AAC are no different. Learn from our expertise and creativity about what we really need.

Of course, we as a community experience limitations of all kinds beyond the cognitive. Blind people and people with low vision have precious few choices when it comes to AAC they can use, and people who have difficulty with unexpected motor movements and sensory regulation are also repeatedly left out. Our community has many and various sensing strategies, including both sensory limitations and sensory expansiveness. These, too, must be heard to be understood and made a part of the strategies we use to communicate.

Sociocultural and Linguistic Accessibility

A room of ten women who type on iPads to communicate come from ten very different backgrounds, but each one’s voice sounds exactly identical to the others. A Black man elects not to talk at all rather than be humiliated and othered by the white man’s words coming from his speech-generating device. A child grows up unable to speak directly to his Tamil-speaking parents and grandparents because the language is not available on his AAC device. Conversational partners interpret an AAC user’s generated speech as hostile or rude, for no reason other than that it lacks emotion or tone. The words needed to describe a queer teenager’s daily life do not exist on their system; neither can they swear or talk about sex or drugs. The only way to laugh is to type out the words “ha ha” and hear them flatly read aloud, and good luck trying to convey sarcasm or any emotion more complicated than mild pleasantness.

As a proud intersex transgender person and white Appalachian, language and voice are integral parts of my social, cultural, and personal identity. Though I prefer the written word, there are occasions where audible speech is required in a world that continues to privilege speech over any other form of communication, and during those occasions I’ll do everything I can to avoid using my SGD. Not only does it not sound like me or anyone I know, but I can express emotion a thousand times more eloquently in text than I can through its mechanical generated speech. It’s not just frustrating, it’s dehumanizing, and often intensely isolating.

Despite the rapid advancements in language processing and machine learning, our vibrant and diverse community has seen few benefits. Crucial social aspects of language like tone and pitch have virtually no representation in generated speech, leaving us unable to express sarcasm, solemnity, laughter, and myriad other emotional cornerstones in anything other than the same wooden tone as everything else. Sociolinguistic characteristics, cultural vocabulary, and non-English languages are often ignored in favor of the linguistic features of the privileged mythical norm (Kulkarni & Parmar, 2017). We deserve to carry and convey emotion and social, cultural, and personal identity in our voices as much as anyone else does, and being able to do so is a crucial part of our belonging, self-confidence, and quality of life.

Social Invisibility, Ableism, Stigma, and Exclusion

AAC users should be able to come into contact with anyone and everyone without fear of bullying, social isolation, ableism, violence, and other negative outcomes, but that is not our current reality. A lack of awareness from people who have unconditional access to speech is a huge part of what makes it difficult or impossible to use AAC in public life. I am dismissed and ignored when I need to use AAC in public life, and I may end up forcing speech when doing so is painful or exhausting. If I do not, I may face humiliation, discrimination, or harm in silence. People who never have the option to use their mouth like I do often face much worse.

Everyone needs to know about AAC, not just so that they can use it if they need it, or refer their friends and family to it, but also so that AAC users can interact with them without being treated with disrespect, dismissal, or worse. AAC needs to be normal. I should have known that I could type to talk when I needed to when I was a child; my mother, teachers, doctors, and friends should have known, too. AAC is not and should never be treated as a last resort, a worst-case scenario, or an oddity.

Researchers need to witness the breadth and depth of the ableism we encounter on a daily basis, and must reveal through study the negative effects it has on our quality of life, health, safety, and wellbeing. Listen to our stories about AAC devices taken away from us in hospitals, about being taught the colors of the rainbow every single day for over a decade, and about being hung up on every time we try to make a call. The stigma we experience does not mean that we should avoid using AAC, but rather that we need to educate people in all settings about AAC and communication disability and improve accessibility in the places where we experience the greatest barriers. For me, facing a systemic chronic degenerative disease that requires complex and frequent medical care, these significant barriers include non-optional communication over the phone, healthcare discrimination, and lack of public awareness (e.g., at the pharmacy), but for others, the biggest issue is unquestionably a tendency of people, most impactfully care providers and educators, to link speech and language disability spuriously to cognitive and intellectual disability while unfairly treating all of the above as less valuable and less human.

Lack of Access to AAC

The majority of people who could give us access to AAC don’t and won’t. They may believe that we can’t use it, or that we don’t have anything to say, and conclude that there is no point in trying. They may believe that we can speak sometimes, so it’s not a big deal, since we can force the speech out if we really need to—never mind that it may not be the speech we mean to produce, or that it may cause lasting health problems (Zisk & Dalton, 2019). Maybe they never learned about AAC in school and haven’t considered learning on their own; maybe they understand just one system and consider that sufficient. Maybe they think that the stigma or difficulty of using AAC is so great that it somehow cancels out the transformative and vital power and right of being able to express oneself. Or maybe they think it’s just too expensive or time-consuming, not worth the money, time, or effort—and of course, whether they realize it or not, that means they think we’re not worth the money or effort, and we pick up on that attitude.

None of these excuses can mean inaction. Communication is a human right. Every single person has the unalienable right to say anything and everything they want to say, whenever they want to say it, and, correspondingly, the unalienable right to get the support they need in making that happen. Yet this right to communication and self-expression is being alienated, thousands or even tens of thousands of times a day.

We have no idea how many people need AAC in the US and around the world, let alone how many need it but have been denied access to it, but the latter is almost certainly at its worst in institutions, where, in the US, people without access to speech are some of the last disabled populations who have yet to be freed and supported in their communities (CommunicationFIRST, 2024). We simply don’t know the extent of the damage this does, let alone what to do about it. We don’t know how many people are suffering and unable to tell another human soul, unable to so much as keep a diary.

Trauma Caused by Communication Deprivation and its Consequences

Herman (1992) describes complex trauma as continued threatening circumstances where a person feels both helpless to change or escape their circumstances and abandoned by the “ordinary systems of care that give people a sense of control, connection, and meaning” (p. 33). Unable to express autonomy to secure their safety, and unable to rely on other people to support them, they move through life with their nervous system in a constant state of hyperarousal (van der Kolk, 2014). This is chronic traumatic stress, and its manifestation is complex post-traumatic stress disorder.

Across all kinds of speech and language disabilities, we see the same patterns leading to complex trauma, across the lifespan and across disabilities. A lack of access to communication leaves individuals feeling helpless to escape or change their environment, which leads to nervous systems rendered dysregulated and hypersensitized by traumatic stress: often, but not always, compounded by the already-sensitive nervous systems present in some disabilities that impact speech and language (Delahooke, 2019). Involuntary physical reactions caused by this dysregulation, attempts to communicate despite lacking appropriate AAC tools and supports, and trauma responses like re-experiencing, avoiding triggers, and hypervigilance are all deemed “challenging behaviors” (Blanco et al., 2023; Delahooke, 2019; Harvey, 2012). Receiving negative responses to these “behaviors,” such as frustration, fear, disgust, anger, verbal or physical abuse, and social isolation, is re-traumatizing to an individual who is stressed and needs support (Institute on Trauma and Trauma-Informed Care, 2021). Behaviorist interventions that attempt to control or “extinguish” both “challenging behaviors” and benign manifestations of disability (e.g., aversion to eye contact, stimming), as well as speech-language interventions that focus on speech to the exclusion of communication, are often traumatizing in themselves, and lack the stabilization enabled by unconditional support and relationship building (see, e.g., Autistic Self-Advocacy Network, 2021; Sandoval-Norton et al., 2019; Shkedy et al., 2019). Also traumatic are the numerous events that can occur as a direct result of being unable to communicate, such as abuse, violations of bodily autonomy and integrity, preventable medical events, and social isolation (see, e.g., Baladerian et al., 2013; Bryen et al., 2009; Morris, 2022; Shapiro, 2018; Stransky et al., 2018).

Each part of this pattern varies depending on the individual, their disability and age of onset, and their systems of available support and care, but no part of it is completely unique to a single demographic. The trauma endured by people without access to AAC is rarely recognized and even more rarely addressed and supported.

At this time, we lack data on the lasting traumatic effects of not being able to communicate, but we have enough understanding of the phenomenon of trauma and the importance of communication and social connection to know that it must be horrific and totalizing. There are people right now who are not only unable to say things like “no,” or “I am hungry,” but also, “My favorite color is blue because it reminds me of the ocean,” or “I feel wrong when this person talks to me, but I don’t know how to ask for help and I’m honestly scared that I might deserve to feel this way,” or “Isn’t the sky beautiful right now? Look at the way the clouds part for the sun, the way the pinks and oranges bloom like watercolor,” or “There’s a sharp pain in my back and I’m really nauseous and I think I need to go to the hospital but I am scared about how they will treat me when I get there,” or “I want to learn to read so I can write poetry, can you help me?” or any number of other things that come up in the course of being human.

This kind of isolation is beyond almost anything we can currently imagine. It is clearly and dramatically distinct from the violence of solitary confinement, domestic abuse, or colonialism, and yet the lessons we have learned about the pain and damage these kinds of violence can wreak on the human nervous system and psyche can and must be applied here. Ultimately, though, we won’t be able to fully understand its developmental, cognitive, psychological, physical, and social effects without speaking directly to the people who lived through it.

To do this, we must give everyone who has been denied access to communication the tools to tell their stories, to speak their minds, and to be a part of their own worlds. It is our ethical responsibility as humans, and in the US, it is also our legal responsibility, according to the Olmstead decision in 1999² (Olmstead v. L.C., 1999): people have a right to live in their communities, but simply being deinstitutionalized is not always enough to fulfill this right. We are not living in the community if we cannot communicate with the people that constitute our communities.

Even once we are able to access both AAC and our communities, we have to recover from the trauma of being denied AAC. For example, many of us have to relearn—or learn for the first time ever—how to say no, or how to have an opinion. Many of us have to learn for the first time that we have the right to be human.

In trauma studies, by learning from survivors of the Holocaust and other genocides, of war and displacement, of slavery and colonialism, and of domestic abuse, incest, and rape, we have come to understand that telling our stories and being witnessed is the only way to durably and meaningfully heal from trauma (Herman, 1992; Laub, 2013; van der Kolk, 2014). That witnessing cannot happen without both robust, language-based AAC and an understanding of the best ways to support us in recovering from this unique trauma, as people with a variety of disabilities, from a variety of backgrounds. We will need to synthesize our knowledge of trauma with the stories of people who survived being deprived of communication to identify the skills they need in order to recover and thrive, like boundary-setting, self-worth, coping strategies for trauma symptoms like hypervigilance and avoidance, and emotional and sensory regulation. But these are just examples: what skills should be considered important, strategies for developing those skills, and the kinds of support that will be necessary for different people to use them must be determined through trauma-responsive cross-disability conversations, preferably led by peers. Trauma-responsive psychosocial education for family, care providers, educators, and peers can also decrease the incidence of traumatizing experiences like dehumanization, infantilization, “normalizing” interventions, restraint and seclusion, institutionalization, abuse, isolation, and the horror of the inability to be heard and understood by others.

To be denied expression of the self should be unimaginable, but it is not. It is happening. It is our responsibility as researchers, as advocates, and as people to not only imagine it, but to find out why, how, where, when, and in what ways it happens—and to make it right.