I use an AAC board to communicate and I don’t have an intellectual disability – by Tyron Cook
People think because I require the use of AAC, that these words do not come from me, that they are not my thoughts and feelings. CORRECTION, everything you are seeing and hearing is all me, when you hear me use mouth words, you only get 40% of what’s in my head as there is a disconnect between my brain and mouth. Many people believe AAC users all have an intellectual disability and treat us like babies by talking to us in patronising, high-pitched voices and speaking slow (please don’t, even if individuals DO have an ID, they are still humans who deserve respect!) and there are a few Speech Therapists who believe there is a criterion to getting AAC which, seriously!? Are there criteria for people who use mouth words to pass before they are told they can use their mouths?
Now on the subject of being a good Communication partner, Communication partners are very important to an AAC user, we need to be able to trust in you and know you have our back. I am going to tell you how you can be a great Communication partner.
1: Presume competence, there are NO prerequisites to getting an AAC device.
2: Please do not look over our shoulder, you wouldn’t like it if we looked over yours.
3: Be Patient, typing our message takes time and effort.
4: Unless you have permission from the AAC user, do not finish our sentence for us, it is really annoying and tells people that you don’t think my voice and opinion are important.
5: Under NO circumstances should you remove our device from us, sadly this is often done by A.B.A Therapists and Teachers and only given back when the user complies!
6: Keep the device in our sight, imagine if you wanted to communicate and your mouth was not where you could reach it, it would make you feel frustrated.
7: Model, I cannot emphasise this enough
8: Don’t touch our device, model on your own device, otherwise the user will learn it is not their voice and may refuse to use it.
About the author:
I am a 42-year-old man, who is born and raised in New Zealand. I have PHACES Syndrome which is very rare (there are only around 5 of us in NZ and I am the oldest we know of here), this affects my brain, senses, muscles, nervous system, vascular system, as well as the skeleton and connective tissue.
I have a Certificate in Social Services (Biculturalism), which helps me in my advocacy work, but I would love to work with children with special education needs. I write poetry, short stories and have written a song. I also paint and play a strong part in my Church community. I love knitting and music, anything related to space and cats, and my favourite show is Star Trek.
I was recently published in a book, telling my experience over lockdown as a person with a disability.
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I found this helpful and liked your wry tone