Why you should listen to people with disabilities over our parents

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.

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14 thoughts on “Why you should listen to people with disabilities over our parents

  1. notesoncrazy says:

    Excellent post! Spreading education of what AAC really is and how it is a much more helpful system (or more accurately, a nearly infinite number of more helpful and individualized systems), is so incredibly important. In my SLP work, parents and caregivers always wanted to know “so when will my child/parent/loved one be able to talk to me [again].” It is the responsibility of the professional to say, “The question to ask is not when things will get easier for you by someone else speaking, but how you can make their lives easier and better by learning how to listen.” There is an attitude that AAC devices or other methods of AAC exist as a “crutch” or a placeholder until the person is “well enough” to just speak. This attitude is so incredibly harmful and invalidating to people – adults and children alike – who just want and deserve to be heard.

    And I am SO happy to see a link to an ASHA article. ASHA, sadly, is not known for being super supportive of AAC in practice, but at least they can maintain some level of objectiveness in the research they publish.

    • ischemgeek says:

      Thanks. I’m relieved you liked it – I admit it was with a bit of trepidation that I posted this, as I’m far from a full-time AAC user and I have no training in SLP. That said, I do feel it needed saying.

      • notesoncrazy says:

        That’s kind of the beauty of AAC though! No need to be a full-time user to see the potential. Anyone who has ever had such a bad sore throat that they wrote something down instead of trying to speak, or anyone who has ever tried to get a message across to a friend across a loud room with gestures and facial expressions, or anyone who has ever decided to write a letter to articulate things better instead of blurting out whatever comes to their mind in emotional passion…just about anyone ever should be able to see how useful AAC can be, and should be able to respect it in all its many iterations as functional and necessary communication.

      • ischemgeek says:

        Yes, I agree completely.

        And, anyone who’s ever taught a kid to write or type should be able to realize that someone who’s just learning AAC, while they might not be able to communicate entirely independently, are communicating their own thoughts, not someone else’s. If you get a currently-able child to write a story, that they’re not fully proficient with pencil and paper yet and might need help forming certain letters or spelling certain words does not mean the story isn’t theirs.

        Likewise, when a therapist, paraprofessional or parent helps a person with AAC, that doesn’t mean at all that they’re speaking for the other person. Interpreting would be a far more apt word.

    • autisticook says:

      Have either of you read this article on the “hierarchy” in giving people access to AAC? Also extremely interesting. http://teachinglearnerswithmultipleneeds.blogspot.nl/2014/01/why-prove-it-with-low-tech-first-doesnt.html

      • notesoncrazy says:

        I hadn’t seen that article before, but I can get behind it 100%. One of my patients at the pediatric rehab I worked at was a 4 year old autistic boy whose amazing mother had gotten completely fed up with people treating her son like…well, her words are words I won’t use here on this blog. But my supervisor and his mom worked together to get him an ipad and identify what AAC apps he could best utilize, and by age 3 he was communicating needs directly sure, but more than that he was telling narratives, expressing emotions, even practicing LYING (which is a good thing!). He also got so skilled at the ipad that he bought like every single Disney related app ever from the app store (and yes his mom DID have it child locked and password protected!) and proceeded to change the password and reset all the permissions so that only he could use it! The kid had spunk. He doesn’t speak at all. But what exactly should he?! When people stopped trying to get him to make eye-contact and practice “buh” sounds and instead threw out hierarchy of speech and hierarchy of AAC, he began living a much happier life. And for what it’s worth, his mom was a lot happier too!

      • ischemgeek says:

        Heirarchies of learning annoy me, just because I’ve learned so many things out of the accepted orders and have had many try to arrest my learning because I wasn’t learning the “right” way. Even if there is merit to some of it – even if most do learn in a particular order, which I’m not entirely convinced of – educators need to be aware that 1, outliers exist, and 2, the answer to an outlier isn’t to pound them back into the mold, but rather to adjust teaching style and trajectory accordingly.

      • ischemgeek says:

        Hadn’t read it before you linked it. It was a good read. Thanks! šŸ™‚

  2. Ari says:

    As full-time AAC user, am SO wish more people thought like this. Too many people talk of “cure” and how that would “make” me speak as if that is only important thing. Suspect I would be dead now if had not given up trying to learn to speak and focused on communication as a whole instead.

    Only on internet am I sometimes treated as competent adult instead of half-wit, deaf, stupid, child. Or worse. Most of life having people tell me what I think and feel, it gets so confusing.

    • ischemgeek says:

      I still use AAC part time. Don’t need it as often as I used to but I do still need it sometimes. I remember how wonderful it was to me when I figured out that I could get past the “Spit it out”s and “use your word”s and crap like that with writing or typing. I can only imagine how much more important it must be to full-time AAC users. I get some social backlash for using AAC (people think I’m being childish or what have you). I imagine that’s worse if you use AAC full time.

      I’m very glad you liked my post. Thanks for taking the time to comment.

  3. has yet to master AAC of any kind and I hope to god I’m in that parent category where I try like hell and get it right at least sometimes…but we are always working toward the goal of him speaking (in whatever form) and advocating for himself. It bothers me that I’ve seen exactly what you’ve described…that maybe no one will listen, take him seriously. If I as a parent have to speak for him in order for him to be heard I will…but to the best of my and his abilities it will be to say what HE wants and what HE has communicated to me previously

  4. Also why even if he ever does learn spoken communication I plan to keep some form of AAC on hand for when he needs it…I’ve even seen that aspies (who overgeneralizing are gifted at spoken word) have verbal issues when stressed so how much more so a previously non speaking person?

  5. I saw the call-for-writers conversation that (I assume) inspired you to make this particular (and excellent) post at this particular point in time and I just wanted to thank you for standing up for us. I also read the original post-Valentine conversation that led to the call for writers. I read that community but I do not participate because it has always felt like a hostile and dangerous environment that would crush someone like me in about 2 seconds. I am so grateful for you and K. and the few others of the Autistic community I see who do have the strength to speak up in that space and try to hold people accountable. I know my voice here isn’t as helpful to you as it would be over there, in the midst of the debate, but I still wanted you to know that I saw and I agree and I appreciate. Thank you.

    • ischemgeek says:

      I don’t participate there often, either, for the same reason. They are good on many issues, but they are not nearly as intersectional as they like to think they are (and they won’t be for so long as DD/CD people are their default go-to insult, and the very idea of DD/CD rights movements evokes scorn and disbelief).

      I don’t blame you for being unable to participate. Oftentimes I’m not, either (yesterday on Twitter comes to mind – my asthma was acting up pretty badly and I couldn’t concentrate as a result). It so happened that this happened at a time that I was already feeling prickly (so outrage overrode my fear) and that I had enough energy to stay in it as long as I did. Heck, until this past year, I probably wouldn’t have said anything because I was too scared of being rude. Now I realize that rudeness is an entirely appropriate response in the face of that. But it still makes me nervous, not going to lie.

      I’m glad you appreciated our efforts. Thanks for writing to let me know. I appreciate it. Sometimes it gets lonely when people you used to admire seem to be screwing up left, right, and centre.

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