AAC and Technology: What’s Communication Equity Got to Do with It?

Abstract

Many, if not most, people who need AAC are still denied effective language-based AAC; assumed illiterate for life; and subjected to extreme isolation and violence. We must secure fundamental fairness and mitigate the multiple and compounding biases and discrimination that those who require AAC endure. We must envisage ways in which people who use AAC can be better heard and live in community with all others. True community is not a dot on a map. It is a way of belonging. The right to community and communication are symbiotic. While our disabilities modify the ways we live, unchallenged biases cripple our lives far more. Communication equity boils down to the societal and legal obligation to ensure that all people have fair and universal, lifelong access to all means of communication. Research is required to determine whether the way we talk about AAC perpetuates the erroneous assumption that people should express themselves and be understood in one prescribed way only. To move toward communication equity, we need research grounded in the lived experiences of those who need or use AAC. We need to work together to bring about communication equity, not for the privileged few, but for all.

In 1992, I participated in a Consensus Validation Conference on Augmentative and Alternative Communication (AAC), convened by the National Institute on Disability and Rehabilitation Research (NIDRR) in the United States (NIDRR, 1992). The conclave brought together researchers, educators, parents, clinicians, and persons who use AAC to arrive at consensus on best practices and benefits of AAC. This was the first formal recognition of AAC and its benefits by the federal government in the US. We have come far since then, but not far enough.

The work we all do, I believe, must increasingly come down to pursuing, and attempting to secure, fundamental fairness. For example, the work Gloria Soto and many others are doing to elevate strategies to mitigate the multiple and compounding biases and discrimination that Black, Indigenous, People of Color who require AAC endure is imperative (Alper, 2017; De Leon et al., 2023; Kulkarni & Parmar, 2017; Pope et al., 2022; Soto & Vega, 2024). I hope this paper and my work will interject a stronger social justice ethic, which is too often absent. We must envisage and create knowledge and ways in which we can better express ourselves, be heard, and live in community with all others. The aim of the Americans with Disabilities Act (ADA)¹ in the United States (US) can be summed up in these 3 words - the right to community. For true community is not a dot on a map. It is a way of belonging. The right to community and communication are symbiotic.

I am getting ahead of myself, though. So, let me note that the views I am expressing are deeply my own and do not necessarily reflect those of others. To self disclose, since 1990, I have used a speech generating device. From my childhood to this day, I also have relied heavily on my speech and other natural means of expression to go about life and my career.

More importantly, many, if not most, people who need AAC must solely use natural ways to communicate such as gesturing, pointing, using letter and picture boards, and sometimes spoken words - not just so called vocalizing, mere uttering, or grunting - but using and understanding spoken language in ways that, as a society and as individuals, we fail and, yes, at times refuse, to comprehend. I continue to experience this. More importantly and far more gut-wrenchingly, so do many others share this experience - by still being denied effective language-based AAC², assumed illiterate for life, segregated, institutionalized, and subjected to extreme isolation, learned helplessness, post-traumatic stress, violence, and social death. The need for further work on these topics through the combined lens of intersectionality and participatory action research is crucial. Our disabilities, of course, limit and modify the ways we live. Deep rooted societal and professional biases, however, can and do cripple our lives far more. It is imperative, therefore, that research that helps us to better understand and disrupt these intertwined interactions and impacts be prioritized. And those of you who conduct AAC research and the agencies that fund it desperately need us, not as passive subjects, but as equal partners and leaders (Blasko et al., 2025).

To borrow from Bob Dylan (1975), I am writing this paper due to several simple (and priceless) twists of fate - the love and hard work of many, including myself, as well as white privilege, and a massive amount of sheer luck. I remain an exception to, and have broken free of, many societal rules and prejudices. I say this not with joy and pride, but with sorrow and great rage.

I grew up and came of age during the 1950s, 60s, and 70s, at a time when hundreds of thousands of baby boomers, like me, were institutionalized by their parents, who were told by doctors and others to commit their sons and daughters, walk out, and never look back. (Sienkiewicz-Mercer & Kaplan, 1989). These children were denied an education and worse. I experience ableism to this day, but I have always escaped its most hideous consequences – ones that many endured then, and, for some inexplicable reason, continue to confront today.

In 1965, my occupational therapist plopped me down in front of an IBM typewriter, put a stick in my hand, and had me peck at random keys. Presumably, she thought it might improve my eye-hand coordination. Soon, though, she and others recognized what my parents, brothers and sisters already knew. I could spell out the same words, short sentences, and answers to knock-knock jokes that other 8-year-old children could. I am convinced that had that not occurred, I would not be writing this today. I would not be who I am. Given the times I grew up during, I can almost rationalize why instances like this back then occurred out of thin air - utter randomness.

But no one should rationalize the fact that the same galling randomness persists today. We frequently hear from young people and adults with developmental and acquired disabilities who tell us that their communication needs, competencies, and rights have been routinely ignored and trivialized for years and often decades. And so have their right and need for language-based AAC. There are those who would say that none of what I have just said is supported by evidence-based research. Maybe so. But it is disturbing and warrants investigating, and remediating.

Decades after the landmark civil rights laws like the Americans with Disabilities Act (ADA) took effect in the United States, the effective communication and community living rights of people who need AAC are still being ignored, violated, and go unenforced. This egregious status quo must end. Research that we all must conduct together must inform and hasten such change.

What has all this got to do with AAC, technology, and communication equity? It has everything to do with it.

There are several evolving definitions of terms and concepts like communication equity and equity-centered communication. For me, however, these concepts boil down to the societal and legal obligation to ensure that all people have fair and universal, lifelong access to all means of communication. I am not presupposing all people would use every means of communication at various points in life. But I am proposing that all people, including those who need AAC, must be afforded the universal right to readily access and readily use any means of expression and language use at any and all points in their lives.

The reason I think it is important to engage in collaborative research to address communication equity is this: From the youngest to the older, regardless of their disability or the age at which they acquired a need for AAC, many, and I fear most, of those who need AAC are being denied it, and consequently, often experience the most egregious forms of discrimination, largely driven by stereotypes, old and disproven research, societal dogma, flawed and prejudicial IQ scores and similarly biased assessment methods, administrative convenience, gatekeeping, cost concerns, and the widespread bias that we have little to no intelligence, little to say or contribute, and no right or ability to lead ordinary lives.

Some might assert there is not a sufficient evidence base to validate what I have said. My question for you is: Why not? Comprehensive research is desperately needed to investigate the dogged persistence of such discrimination, and what must be done to dismantle it. There has been enormous, and transformative, progress made in this and related fields over the past 30 years and more. and I am aware and appreciative beyond words that I am among those I call the privileged few who every day continue to reap the greatest from these gains. Yet, your and my duty is to do the work that remains - especially by learning from and being informed by the life experiences of not only those like myself who have access to the AAC tools and support we need but also the significant number of our brothers and sisters for whom the promises of AAC and civil rights legislation (e.g., laws like the Individuals with Disabilities Education Act [IDEA], the ADA, and the Civil Rights Act of 1964 in the United States) and international treaties such as the United Nations Convention on the Rights of Persons with Disabilities (CRPD; 2006) are unrequited.

To accomplish this, we must jointly ask and seek answers to questions regarding what it takes to pursue communication equity for all. The first of these concerns the term and concept of what we refer to as: augmentative and alternative communication. I first heard or read about the term and the meaning of AAC in the late 70s or early 80s so it has been around for a long while. Thus, it is time to revisit the term. My questions are these:

• To what degree do individuals who need AAC, their families, speech language pathologists (SLPs), teachers, direct support professionals, bureaucrats, gatekeeper funders, policy makers, and the public understand the term and what are the implications?

• Does the current categorization of AAC create a hierarchy of types of AAC that unduly favors technology over natural methods, including traditional communication boards and re-voicers to replace or supplement speech? Does it favor “off the shelf” technology versus dedicated devices? And who are the winners and losers?

• If so, what intersectional impacts does this hierarchy have on people? What are the good, bad, and ugly implications of using the term in the digital age?

• What can be done to enhance communication support, including language-based tools, for those whom technology fails for any number of reasons?

• In what ways does the current concept of AAC foster or impede communication equity for all? And what are the ramifications of this on the everyday lives of people? Research is required to determine whether the way we talk about AAC perpetuates the unwarranted and harmful assumption people can and must be forced to express themselves and be understood in one prescribed way - and one prescribed way, only.

• What public policy, financing incentives, safeguards and systems must be put in place to ensure people, especially those who are multiply marginalized are able to access AAC as soon as they acquire the need for it at any point in their life?

• What must be done to ensure that decisions regarding who can access language-based AAC are made in a nondiscriminatory manner and subject to conflict-of-interest free review?

• Those who solely or largely must rely on natural expression through gestures, emotions, and behaviors are frequently diagnosed, if you will, as “language-less.” Are there actually ways we can ever definitively know how someone might be understanding language internally? If not, the branding of individuals in this manner must stop.

Research is also urgently needed on what the outcomes are for people of all generations, races, languages, conditions, and circumstances based on whether they have effective access to language and literacy-based³ AAC - or not.

There is credible evidence that people who are denied effective access to AAC, especially language-based tools, experience high rates of segregation, illiteracy, institutionalization, extreme isolation, dismal health care, violence, social death, and euthanasia. Some research exists on these matters. But far more comprehensive, rigorous, and participatory action research and development efforts are critically needed. We need to gauge and document both the magnitude and the real-life toll that such widespread cruel injustice has on individuals, families, communities, and society at large.

To move toward communication equity and justice, we need research grounded in ethnographic, oral history, video storytelling, and similar research methods that chronicle the lives, dreams, aptitudes, and fears of both those who are caught up in the cycle, as well as those of us who have escaped it for we possess much of the knowledge, insight, and urgency, that is pivotal to freeing others like us. Readers are referred to the papers authored by AAC users and published in this historic issue of the journal Augmentative and Alternative Communication (Light & McNaughton, Guest Editors, 2025) as well as the See Us Hear Us digital storytelling and advocacy campaign by AAC users (CommunicationFIRST, n.d.).

As I look back over the decades, it is clear that I am extremely fortunate to know, love, learn from, and be emboldened by other people who need AAC, richly diverse, in their race, disabilities, so called intelligence quotients, languages, age, gender identity, culture, and life station. External and internal oppression gnaws away at our spirit when we know we are completely alone, misunderstood, and dismissed as someone or something who we know we are not. This oppression is further magnified when there is no one to whom we can turn who has lived, felt, and experienced our truth. We all benefit from support from someone or, better yet, several “someones” around us who have lived lives that, if not the same, are very similar to our own - people who we can mutually support, learn with, dream with, and grieve with, and work with to co-create a more just world. It is called peer support, among other things. And many of us freely offer and receive it every day without thought. It is essential to us personally and for throwing off oppression of all degrees.

Yet, for all the reasons I have touched on and others, many if not most children and adults who need AAC are isolated from each other or face enormous barriers in connecting with, caring for, encouraging, and supporting one another. In the 1980s when I worked as a court monitor at Forest Haven, the District of Columbia’s former institution in the United States, I met many who grew up together and who were one and inseparable in their understanding and love for one another. Fortunately, some around them recognized and honored their relationships. Yet, such individuals also were sometimes carelessly or even callously kept apart from each other and paid a grave price. Institutions are closing, but the isolation that people who need AAC experience is just as prevalent and unforgiving. The former U.S. Surgeon General called for a nationwide assault on what is described as a public health epidemic of isolation (U.S. Surgeon General Advisory, 2023). Yet, little is being done to identify what is most likely its disparate consequences for people who need AAC, much less what actions are required to remedy them.

Expanding the access and opportunities such individuals have to engage is not a silver bullet. However, battling degradation and exclusion begins with knowing and drawing strong together. We at CommunicationFIRST⁴ believe greater justice will only come when people who need AAC bring it about together for all of us. This is why we are proud to partner with the Association of University Centers on Disabilities and the Oregon Institute on Developmental Disabilities on a project, funded by the Administration for Community Living of the Department of Health and Human Services in the United States. The project explored ways in which people who need AAC are currently engaged in peer support as well as how such efforts can be made more universally available⁵.

Last, but not least, I want to stress the need for immediate research and development (R&D) efforts that articulate the existential opportunities as well as the existential threat that the Digital Age and ubiquitous technologies like artificial intelligence pose. I was on the White House lawn when President George H.W. Bush signed the ADA into law, declaring it was well past time for the shameful wall of exclusion to come tumbling down. Much progress has been made in achieving this aim. But I fear that the walls of digital exclusion are becoming just as high, impenetrable, and life-robbing.

For the extremely small number of us who can use both speech generating devices as well as the Internet, websites, email, and platforms like Zoom, the results often are positively transformative. But most people who need AAC, regardless of whether they have access to it, have no or meager access to websites, apps, digital content, or other information and communications technology. Increasingly, people who need AAC are walled off from society and community, and thus made even more invisible, and powerless. Technology is never neutral. It can liberate, or isolate and exclude. The research we do must create a map for taking the path that is still less travelled. One of the major takeaways is that we need each other. We need the very best of one another to do the work that we all are committed to doing. I am more confident than ever that together we will bring about greater communication equity not just for the privileged few but for all who need and struggle beyond all odds to express themselves, be heard, and live life fully.