A lot of people seem to falsely equate Augmentative and Alternative Communication (ACC) with parents speaking for their kids. I’m going to discuss the difference between the two, why AAC is good, and why parents speaking for their kids is bad, followed by a bit about why “nothing about us without us” is a thing in disability rights.
AAC is an umbrella term for a variety of communication methods that exist to help people who cannot communicate well enough with speech. Stephen Hawking’s computer is a form of AAC. So is sign language. Contrary to some misconceptions, AAC does not delay speech development in kids, and actually might help speed it up.
Some who need AAC are able to independently develop a form of it – consider the various types of “home sign” that Deaf children often develop with their families when they don’t have access to schooling in a formal sign language. On a more personal note, when I was a kid, I took to carrying a notepad and pen for when my stutter became impossible to communicate through, and when I got older, I often would communicate emotional things to my parents via letter or email because I knew if I spoke to them in person, I would be unable to adequately communicate with them about it. Others who need AAC are unable to independently develop their own form of AAC, and are left without the ability to communicate complex thoughts and feelings until someone teaches them one or more formalized AAC method(s). While those learning AAC may require assistance from a parent, paraprofessional, or therapist to communicate, the eventual goal is for the person in question to be able to communicate independently. AAC, thus, exists as a tool to help those with speech and language challenges to express their own thoughts, wants, needs, and desires without interference from others. It exists to enable them to use their own voices. Furthermore, while the AAC user may need help to express their thoughts, the thoughts expressed are theirs, not what someone else thinks their thoughts might be.
By contrast, when parents speak for their kids, that is the parent using hir judgement to guess at what their kid might want. The parent might, if they are very empathic and know their kid quite well and presume competence, get very close to what their kid wants. But they might not. In many cases, even well-meaning parents who try to speak for their children with speech and language challenges presume their children to be incompetent due to ignorance. Even when the parents understand their kids’ wants, needs and thoughts adequately, bystanders, classmates and strangers are unable to attain this same level of understanding, and the disabled person is thus left in an infantilized state of forced dependence on their parents – and that is the best case scenario, when the parents genuinely understand their kid and want to help hir be understood. Worst case scenario, the parents are actually completely misunderstanding what their child is trying to communicate, and leaving their child’s needs and wants unmet. Given that people with normal communication abilities very commonly misjudge each others’ wants and needs, odds are far more likely that, when faced with a person who communicates atypically, an ordinary person will misjudge the atypical communicator’s needs and wants severely.
Furthermore, allowing parents to speak for their children is problematic as it presumes that disabled people are incompetent to do so themselves. Every NT I’ve ever spoken to can remember a time when they were a child and their parents spoke for them in something and got it wrong. They remember the frustration and the embarrassment of others talking over them and the humiliation of being chided for trying to correct someone who was speaking for your wants and getting it wrong. I ask NT people who’ve had that experience: Consider what it would feel like at 16. Or 26. Or 36. Or 76. Consider how upsetting it would be to grow up where those around you spoke for you rather than asking you what you wanted. Where they made assumptions about what you wanted rather than asking, and where your actual thoughts and feelings were doubted to even exist, when they were considered at all.
That’s how people with cognitive and developmental disabilities are treated all the time.
“Nothing about us without us” is a rallying cry of the cognitive and developmental disability communities for a reason. And that reason is this: We are excluded. When you presume to speak for us, you exclude us. We are presumed incompetent. When you assume we need you to communicate for us, you assume us incompetent. We are neglected. When you don’t bother to find out what we actually need, you neglect us.
The truth is that we are competent. Don’t ask our parents to speak for us. Ask us. Don’t push our voices aside and speak for us. We can speak for ourselves.