Dr. Lateef McLeod's “How Ableism Impacts People Who Use AAC” presentation was first given at the Future of AAC Research Summit on May 14, 2024, in Arlington, Virginia. Lateef is a member of CommunicationFIRST’s Board of Directors and is a writer, poet, performer, and scholar in anthropology and social change. He was awarded a PhD from the California Institute for Integral Studies in San Francisco in 2024 for his dissertation on peer supports among people who need and use augmentative and alternative communication (AAC).
An open-captioned film of Lateef’s presentation can be accessed below.
Video production by Penn State University/the RERC on AAC.
Good morning, everyone. Thank you for being here today. My name is Lateef McLeod, and my pronouns are he and him. For a brief description of myself, I am a middle-aged Black man with cerebral palsy, wearing a light purple button-up shirt, and I am in a Permobil wheelchair. Welcome to my presentation on how ableism impacts people who use AAC. I’d like to give an overview of today’s presentation. I will start off with a brief introduction. From there, I’ll talk about understanding AAC and then I will define ableism and give some historical and personal impacts of ableism. After that, I’ll speak about the importance of confronting ableism. Then I will close out.
I’d like to give thanks to the Future of AAC Summit and CommunicationFIRST for inviting me to speak on this important topic. As we’ll discuss today, ableism affects many people who use AAC. In my presentation, I will explain the ways ableism impacts people who use AAC, and then I will give suggestions on how these cultural trends can be prevented and upended. I believe that showing up in an anti-ableist way is one of the most important things we can do in our community. When discussing ableism and AAC, we must first clearly define some terms. First, everyone here should know that augmentative and alternative communication (AAC) are modes of communication that allow for the self-expression of people who cannot rely on speech alone to be understood. There are many versions of AAC, like communication boards made of cardboard with letters, numbers, words, and pictures on them. There are also versions of AAC that are dedicated devices that are primary speech generative devices (SGD) and more recently, the development of AAC apps that can be installed on phones and tablets. With the advancement of technology, AAC has become more accessible and financially available for people.
Now let’s define ableism. Let’s use the definition of the attorney and scholar, TL Lewis, to start us off:
“A system that places value on people’s bodies and minds based on societally constructed ideas of normality, intelligence, excellence, desirability, and productivity. These constructed ideas are deeply rooted in anti-Blackness, eugenics, misogyny, colonialism, imperialism, and capitalism. This form of systematic oppression leads to people and society determining who is valuable and worthy based on a person’s language, appearance, religion, and/or their ability to satisfactorily reproduce, excel, and behave. You don’t have to be disabled to experience ableism (Lewis 2021).”
With this definition, Lewis details how ableism is an integral part of societally constructed beliefs and values such as normality, intelligence, and desirability. The definition also says that ableism is also an integral part of other forms of oppression like anti-Black racism, patriarchal misogyny, and eugenics. It also states that ableism is a form of oppression that determines people’s attributes like appearance, religion, or their ability to conform to certain cultural standards. Essentially, ableism is one way our culture enforces our social order and hierarchical structures. Anyone can be a victim of ableism if they do not follow societal norms that our culture sets for people’s bodies and minds. In fact, we need to realize how corrosive the oppression of ableism is on our culture and society. Ableist ideologies have led to America attempting to erase disability from its social fabric since the late nineteenth century and the beginning of the twentieth century. American cities passed Ugly Laws. These laws barred people with disabilities from being seen in public (Susan M. Schweik 2009). It was also the period that the American Eugenics Movement was striving to end people with disabilities from being born and reproducing (Nancy Ordover 2003). Although we are now a more accepting society toward the disabled identity, thanks to the Disability Rights Movement and the passing of laws like the ADA, we still have a long way to be equitable in terms of disability (Fred Pelka 2012, James I. Charlton 1998). Most of us have trouble envisioning what a fully equitable and inclusive society for disabled people would be like. I think this is because for much of human history, the able-bodied mind and body was prioritized and valorized so much, that to start prioritizing the needs and desires of disabled people becomes something that goes against the grain of our culture.
Now that we defined AAC and ableism, I’d like to discuss how ableism affects people who use AAC. As a person who uses AAC, I have encountered a number of times when people assume incorrect conclusions about my intelligence or competence just because I communicate with an AAC device. I always had an impression that some people were apprehensive in talking to me because I use an AAC device to communicate. I think that people are accustomed to having the people that they converse with communicate orally with a “normal” cadence with them. Any variant from that mode of communication can be too much of a change and off-putting for them. I am involved with CommunicationFIRST, and we have a term for this type of ableism; we call it Speechism (CommunicationFIRST 2022). We define Speechism as the prejudice and discrimination of people because their language, use of language, or mode of expression is deemed inferior. Speechism usually occurs when the dominant group determines that a person’s mode of communication is irrelevant for them because it is strange or incomprehensible. Speechism adversely affects people who use AAC when people do not think their mode of communication is valid or should be listened to. People like me face this mode of oppression daily.
A more pernicious and insidious aspect of ableism is how it obstructs the true reality and the intricacies of the disabled experience. The trick of ableism is to convince people that the abled-bodied mind experience is the only legitimate and valid experience, and all other experiences that deviate from this norm should be ignored. So, there is a preconceived notion that despite some challenges and physical barriers that disabled people face, we all share the same primary experiences. This frame of mind does not recognize that many disabled people and able-bodied people experience their lives differently. This idea makes invisible all the ableist experiences that we as disabled people have to face, from alienation in our home and family life, to exclusion from the job market and exclusion from sexual and romantic relationships. This is compounded for people who use AAC, especially those who have challenges explaining to the full extent how these ableist experiences affect them. Even I sometimes have trouble getting people to comprehend why I reacted so negatively to some of the ableist experiences that have happened to me. These types of ableist experiences cannot be changed by removing structural barriers or by policy changes. There must be a shift in culture where people start collectively confronting all the ways that ableism affects our lives and our culture because even if you do not identify as disabled, ableism affects you too. In the forefront of this movement, self-advocates are starting to discuss the ableism they experience and also their proposals to dismantle this form of oppression— in books, film, in presentations like this one, and in dialogue with other members of our various intersecting communities. We also need to be encouraging and welcoming as a community, as new people who use AAC start to speak about the ableism they experience. As more discussion of these topics occur, it will give people with disabilities more strategies and ways to explain the ableist experiences happening to them.
As an AAC community we can confront ableism in our field and industry by always prioritizing the stories and experiences of people who use AAC, especially in the development of AAC technology and policy related to the AAC community. People who use AAC should be at the decision table regarding everything that involves us as a community. We should be cultivating engineers and other specialists who use AAC that can enter the field and can offer a more improved direction. This will better serve people who use AAC and their interests. As James I. Charlton said, “Nothing About Us Without Us” (1998). The only way we can have an anti-ableist future is for disabled people to lead the way.
Thank you for your time. As we unpack ableism and its impact on our community, may we remember that it is the work of all of us. This concludes my presentation. I hope you enjoyed it.
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