Recently, a discussion among friends in our AAC community came up, about whether or not we should be customizing devices for AAC users to only include words they understand. To clarify, “understand” seemed to refer to the user’s ability to fully comprehend the meaning of the word. One school of thought was to remove words if the user did not have this “understanding.” Our school of thought is absolutely not! For example, Lauren and I have a context for the word “astrophysics” and might say it when talking about last night’s episode of “The Big Bang Theory;” but if you asked us to describe it or tell you about it… we couldn’t. This does not mean that we can’t use the word. Following this train of thought, we believe our AAC users have the right to say any word they want even if they don’t necessarily know the meaning of it. This creates wonderful, unexpected teaching opportunities.
A point I’d like to make about these teaching opportunities is that they don’t necessarily mean the AAC user will walk away with an understanding of the word. And that’s ok! Their verbal peers might not understand your explanation either, but they can still say the word if they choose to! My cousin recently used a swear word and when asked by her mother if she knew what that word meant, she said “no.” Her mother’s reply was simply, don’t use that word again! Verbal speakers use words they don’t understand, so AAC users can too! There may also be times when you have to level your explanation for the user. For example, when young children ask “where do babies come from?” their parents and teachers don’t usually tell the whole story! Depending on the child’s abilities, you may choose to provide a simplified explanation!
Regardless, AAC users have the right to express themselves using the same vocabulary as their typical peers. If there is a word that a typical peer can say, the AAC user should have access to that same vocabulary. We recently read Kate Ahern’s blog post about the dangers of hand-over-hand prompting. It brought up the scary abuse statistics for individuals with disabilities. We should be going above and beyond to make sure our AAC users have access to any word they might need to communicate anything they want, including matters of safety. Even when provided with a robust communication system, our AAC users are at a disadvantage compared to the vocabulary their verbal peers have access to.
The discussion about customizing devices started with talking about adding vocabulary important and relevant to the user while removing any word our users might not have an understanding of. While we completely agree with adding more to devices to make sure our users have vocabulary important to them, we don’t believe in removing vocabulary just because we don’t think they know what the words mean. What we found dangerous about this is it sets a precedent for communication partners to have control over what vocabulary the user should have access to. We worry that the next step would be the removal of words related to self-advocacy because our users have been deemed not to understand what these words mean or the words are graphic in nature. This set us on path to finding as many resources as we could that defend the rights of AAC users to have access to important vocabulary, especially when related to self-advocacy.
Here are some of the important resources we found:
Check out this article about Temple University’s End the Silence project, which advocates for AAC users to have vocabulary in their systems to discuss abuse.
Temple University’s Institute on Disabilities has vocabulary sets that relate to important AAC topics including emergency preparedness, transportation, healthcare, employment, and reporting a crime. They also have communication boards for emergencies.
This is a fantastic article about changing the way people think about the rights of people with complex communication needs.
This post was shared on the Facebook Group AAC Motivate, Model, and Move Out of the Way. A parent created a self-advocacy page on her child’s AAC device.
Communication Disabilities Across Canada has several projects related to social justice, access, and inclusion for people with speech and language disabilities. We particularly loved this resource with picture communication boards related to communicating about crimes and abuse.
We also looked to ASHA’s Code of Ethics to guide us and the Communication Bill of Rights.
From the Code of Ethics we particularly found these helpful:
I. C – Individuals shall not discriminate in the delivery of professional services or in the conduct of research and scholarly activities on the basis of race, ethnicity, sex, gender identity/gender expression, sexual orientation, age, religion, national origin, disability, culture, language, or dialect.
I. M – Individuals who hold the Certificate of Clinical Competence shall use independent and evidence-based clinical judgment, keeping paramount the best interests of those being served.
IV. B – Individuals shall exercise independent professional judgment in recommending and providing professional services when an administrative mandate, referral source, or prescription prevents keeping the welfare of persons served paramount.
The Communication Bill of Rights asserts that “all people with a disability of any extent or severity have a basic right to affect, through communication, the conditions of their existence.”
We’d like to leave you with some final thoughts. “Masking” or “hiding” vocabulary for teaching purposes is temporary. This is something we do when helping AAC users overwhelmed by the full vocabulary set, particularly the abundance of visual input. We support this feature when necessary and recommend that the users have daily time to explore the full vocabulary. Our concern is removing or censoring vocabulary based on what the communication partner feels the user should say. In addition, it is important not only to provide access to self-advocacy vocabulary, but also to teach AAC users when and how to use it.
If a verbal communicator can say it, an AAC user should be able to as well!