The DYnamic Therapy Associates Blog
I just watched a TED talk by Stella Young titled "Inspiration Porn and the Objectification of Disability." You can watch it below. She sums up her thoughts with this explanation of the social model of disability: "that we are more disabled by the society that we live in than by our bodies and our diagnoses."
"I want to live in a world where we don't have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning. I want to live in a world where we value genuine achievement for disabled people."
Stella Young, TEDxSydney 2014
I've noticed something interesting in my social media journey sharing resources and information for people who are non-speaking and their family and friends: the most popular items I share are those that say, essentially, "assume competence," "expect the same from your disabled child/student that you do from other people their age." "Keep trying to figure out how to help them communicate."
Why are these such profound statements that they are shared, retweeted, copied and pasted onto blogs? Why do children with disabilities have to prove their desire to communicate with as many words as their peers? Why do they have to communicate effectively with pieces laminated paper and Velcro, a 2 button rocking plate switch, a single message button, or a Yes/No app before anyone helps them achieve comprehensive communication. To talk across all environments, all partners, all activities and; most importantly, to say ANYTHING, even the bad stuff we don't want to hear?
Why is every other Kindergarten student tossed right into the class learning science and social studies, biology and literature while our children with disabilities have to PROVE that they can achieve in these subjects before they are allowed to be exposed to the curriculum and to share their school experience with all of their friends in their neighborhood? At a minimum we should give them a chance to join the party.
Assuming competence should be a given. We shouldn't need to be told to do this. No teacher in regular education meets a child at the door expecting failure and therefore limiting their education. Are we so brainwashed by our training that we can only see the disability? Are we sharing this errant notion with parents so convincingly that they too can see only the disability and not the potential in their own child? I cannot tell you how many times a parent has told me that a well meaning professional has tried to help the family "face the reality" of their child's disability. So deeply wrong. Not to assume competence is simply discrimination based on a diagnosis, a physical or sensory difference.
I'm not saying that some of our friends with disabilities don't need supports. But give them a chance to try before you assume they can't. Assume that they want to interact, make connections, and communicate just like you do. Make sure they have a way to do it too. That's OUR job. That is where the supports come into play, when we are expecting our student to achieve with the others and finding they need a little (maybe even a lot) of support. If we start from a perspective of expecting people to interact like their same age peers then our supports become meaningful and pointed toward real world goals.
If you wouldn't be okay spending your life interacting by handing people picture cards or answering "yes" or "no" as people try to guess your meaning or; ignored and manipulated because you are assumed to have nothing of value to say, you must understand that it's not okay for a non-speaking person either. If we truly believe our children are valuable, intelligent, have something to say and want to make connections, we would never be satisfied until they had a way to do it.
And did I mention.....
One year ago my 22 year old friend L. could communicate with a smile and a repetitive whole arm pump when she was happy. At least that's what we thought she meant. Very limited eye contact, no speech and no choice-making. She would consistently reach for a cup of water and would hit a rocking plate switch on the right side to ask for the water. No reaching to get anything else. And she would sleep. A lot.
We were told she was "Profoundly Mentally Handicapped" which meant, "Don't even try. There's no chance. She's an adult. She can't learn. Seriously???? You're getting her a high tech communication device???!!?!? She's not ready."
Today L. came in my office. She independently said, "Hi!" "How are you?" and answered me saying "I'm fine" using her communication device. She reached to touch me with a huge smile. Still no eye contact. After we waited a LONG time she said, "I'm ready" and we headed off to my therapy room. She reached for several items on my table she wanted. She grinned and gave me that happy arm bounce many more times. With a lot of encouragement she told us "I like it!" as she saw her new pages on her device. These are the pages that allow L. to begin to learn to independently move from page to page on her device. We just added these today because she has progressed beyond having her partners pick all of her pages for her.
Dad walked in unexpectedly and she couldn't quite get that "Hi" out by herself but, with a little encouragement followed by a long wait, she continued, by herself, to say "How are you?" and to answer again, "I'm fine." I think we should have had, "I am EXCITED" on her device because she was engaged, expectant and interacting!
On the way out we paused for another long wait time and then got to hear L. say, "I'm ready." "Let's get going!" A quick "bye" from me and L. gave me super fast "see you later!" Smiles all around, for L., me, Mom and Dad.
These days L. has a LOT more people talking with her. More people are interacting with her and she is awake a lot more. She is coming to expect people to talk to her and people are expecting her to respond. Everyone agrees that, of course, we need to ask her opinion before we move her or feed her or touch her. And we all agree that it's okay if she doesn't say what we expect her to say. But we'll assume she has an opinion, is socially motivated and wants to be a part of her world. And we'll make sure she has a way to do that, with her device and lots of relevant pages for all of her environments.
Take that, "Profoundly Mentally Handicapped" diagnosis: meaningless, handicapping, limiting label!
Not for our friends!
About the Author: I am a SLP who has the distinct fortune of having a job that is also my passion. I have been an AAC Specialist for almost 25 years in schools and my private clinic. I currently own Dynamic Therapy with my husband, Chuck (also of 25 years) who is my business partner and enabler. We have a wonderful staff of SLPs & AAC Specialists who work with us to help our patients. I hope you find my blog helpful as you join me in our journey with our unique and amazing friends! Vicki Clarke, MS CCC-SLP