I have a lot of things that I want to say about communication & communication systems, because we have been through quite the communication journey this summer. We asked a lot of questions, read a lot of books, watched a ton of videos, and I think we’re becoming quite competent in speaking and thinking about AAC (augmentative and alternative communication). And I still have lots of things to say, but I realized there’s something else that has to come first.
We have got to presume competence.
What does this mean? It means believing that our kids can. They can learn, change, grow, mature, and adapt. It means believing that our kids do. They do have opinions and thoughts and experiences that they are communicating or wishing to communicate. What presuming competence is not — it’s not focusing on cures or fixes or healing. It’s not thinking there is a “typical” child “trapped” inside their disability. It is believing that our children, as they are, as their whole being, disability included, are capable. At its very basic layer, presume competence is about doing no harm. It means that we would always, always rather assume that our children can and are learning from their experiences (even if we are wrong) — because the alternative — believing that our kids are NOT learning and limiting them when they ARE learning — is so much worse.
Yet it’s more than that, too. I think it has to be, once you start diving into the concept — and once you start interacting with people with disabilities from that foundational attitude. It’s respect. It’s acceptance in an unconditional format. It’s inclusion. It’s believing in my daughter’s right to take up space, to get an education, to be an integrated member of her community. It’s asking her what she wants from her life. It’s letting her make real decisions. It’s the big things and the little things and all the stuff in between that makes up our day-to-day life.
It’s not taking away her music because someone thinks that will lead to better control, when she’s nine years old and has the right to listen to music after school — like every other tween does. It’s not using devices that put words in her mouth. It’s not spending years on “prerequisite skills” like matching and sorting and picture identification while she has real things she wants to talk about. It’s talking to her about shopping and clothes and musicians and shows. It’s talking with her, not about her. It is saying that that she has worth — even if she never communicates with her device, even if she never learns to read, even if she never does this or that or some other — she has worth.
Yet, at the same time, it’s also saying that if she does not do those things — it’s not on her. It’s on us. When our kids don’t learn, it’s not because they are disabled or faulty. It’s because we’re not teaching them in a way that meets their needs. When our kids aren’t participating, it’s not because they can’t. It’s because we haven’t set up environments that actively bring them into the the social community.
It’s everything. It’s everything.
Without it, how can someone education my daughter? Without it, how can someone support her to communicate? Without it, how can they be her friend or support system? They can’t. They won’t. They will infantilize her. They will limit her. They will disrespect her, devalue her, and hurt her. They will leave her behind, and they will think that’s okay.
I’m not okay with that.
I’m tired of harping on this again and again, yet I will never stop, because it must be done. We — as the parents, teachers, friends of people with disabilities — have got to stop using actions and language that imply “less than” and limitations. We have to start focusing on accommodations and possibility. We have got to stop focusing on our unmet expectations, our “failed dreams” (ugh), and our lack of support. We have got to start focusing on what this child/person wants for their life — and the lack of support that we give them.
We’ve got to start making changes. We’ve got to say that it’s not okay for my 9 year old to be studying colors and shapes, while her peers are studying poetry and the water cycle and simple machines. We have to choose communication and collaborative problem-solving over compliance. We have to see all the ways we shut out kids down and shut them out. We have to see the leaders and the gifts and the talents that each of our children bring to the world, already, as they are. We have to listen to the voices of adults who experience dehabilitating ableism over and over and over again. We have to see ourselves as the problem, and we have to ask THEM – how can we help? What can we do? Because it’s not about us.
It’s about that child. That student. That friend. It’s making space for them, because we want to. It’s making space for them, because we believe they have value. It’s about believing in them, no matter what. It’s the foundation. Without it, nothing else we do matters.