Thursday, October 11, 2012

If you don't speak, you don't count, families find

The film Certain Proof is a jarring reminder of how children who can’t speak aren’t “seen” in our culture – are made invisible by people who assume they have nothing to say and a system that doesn’t give them the tools and time to develop a voice.

At the beginning of the American movie – shown at our BLOOM speaker night Tuesday – a doctor says that we have the medical care to save the lives of children with disabilities, but questions: “Do we have the humanity to make those lives meaningful?”

The film follows three students – Colin (above), Josh and Kay – as they struggle to be accepted in public schools. All three have cerebral palsy and significant physical disabilities, but Kay can speak slowly, though not clearly.

Two-and-a-half years after the filmmakers began the documentary, Kay seems to be the only one making progress.

Colin – who painstakingly taps on a voice device with a head pointer – learns that he won’t be getting a high school diploma because he can’t demonstrate what he knows fast enough to keep up with peers.

Josh – who is assessed by a team of literacy specialists who conclude that he can learn – returns to a school where staff misinterpret his signals and exhaust him with repeated requests at rote identification of colours and the alphabet. When he gestures toward a picture to say he’s mad, his assistant redirects his hand to the happy face.

School staff, while well-meaning, underestimate the students, focus on what they can’t do, and don’t appear to have the training to help them develop a solid form of communication or a way of participating in class.

Even though Kay is an A student, her peers admit assuming she was "dumb" because she couldn’t speak. They also laughed at some of her movements.

The hectic pace of a regular classroom doesn’t allow these students the extra time they need to express what they know. One literacy expert notes that because communication is so laborious for these kids, they can’t show their intelligence on standard tests.

Two of the parents in the film express their despair and feelings that they’ve failed – despite going to extraordinary lengths to support their children.

What struck me was the spark of personality in each child – and how over time it was snuffed out because they weren’t understood or heard. Over time these children got frustrated and sad and gave up.

Will Colin, who’s bright and engaging, end up by himself in a nursing home in a corner, as his mother fears?

In the discussion following the Holland Bloorview screening, parents, therapists and teachers called on us to be a louder and coordinated voice for our children – publicly telling our children’s stories. One of the reasons our children are marginalized is that the average person is unaware they exist. Most people don’t know children who don’t speak and have no sense of the challenges facing them in a society and school system that values verbal communication.

There was a call to parents to better tell the story of their child’s life – including their gifts and what we’ve learned as parents about what’s important.

I think we’re often silenced in this way because it’s hard to find the words to convey who our children are without speech. We see clearly our kids’ personalities and interests and strengths. But when the average teacher or student looks at our children, they only see what is different.

It does make me want to write more publicly about our life with Ben.

What about you?

Parents of children who use augmentative communication may be interested in monthly AAC clubs for kids and teens at Holland Bloorview. Call 416 425 6220, ext. 3686. Toronto parents may be interested in a Communication and Writing Aids Open House at Holland Bloorview. It's an opportunity to meet other parents, share experiences and learn about supports. Call ext. 3679 to register for this Nov. 1 evening event.


"The hectic pace of a regular classroom doesn’t allow these students the extra time they need to express what they know."

Something needs to change before we can advocate that full and total inclusion is appropriate for ALL children. Could Colin achieve a diploma in a modified setting? But what would that do to his socialization? Would Kay have more confidence if she was able to spend some time with other people with disabilities, or would that be a detriment? So many things need to change about education, how it's run, and how it's viewed by policy makers.
I can't wait to watch this!!!
--Liz the PT

One thing I have learned is that BEING OUT THERE, if at all possible. Engaging in community and finding community allies (not necessarily just disability allies) makes all the difference. And we need to advocate for ALL, model listening to ALL (including street people, children, women ... you get it). I have learned so much from what other people have told me they have learned from my daughter . . . because we were there and they were forced to listen. So I consciously try to include and listen and honour ALL in our community. Even if it takes me longer then, to walk down the street or get to where I am going. I'm hoping this makes sense ...

Debra ... many of them! Some very inclusive ... check out Propeller Dance, H'Art studios in Kingston and Ottawa, a number of different ones offered by the City of Ottawa, at least 2 drama groups in Toronto, and ... well, the list could go on! I will check out your blog and email you!

With a 5 year old daughter who has few 'words' and some ASL signs, I find this story really hits home.
We just beginning the search for where our child might fit within the education system. When she was younger, and in preschool, her lack of speech wasn't as much an issue with peers who were also in 'early speech' mode. As a 5 year old, she is getting left behind and unsupported in a system that doesn't seem to have a place for her and limited resources to support her.

We fear for her making friends, learning, understanding her world and being labelled (among a million other worries with a medically complex and fragile child).

Thank you for sharing this.

As a respite worker who has worked with many different children who have different needs and abilities, I was really sad when I saw this. People, like me, service providers, Educational Assistants, teachers, perfoming on such a low.

As she ignored one child's desire to tell her he was mad, I became mad, because I wanted to shout out for him.

As staff, we never see ourselves as the problem. I get in trouble a lot for telling people how to do someting. I am telling them because I know the client would like me to advocate on their behalf. But, it comes across as me being bossy and people's ego's take over. I am ignored and told, "well, they need to learn everyone is different." It is true, everyone does things differently, but so does that child or adult who depends on others.

When I train my staff, I always have them go through little tricks to see what it is like to communicate with a simple "yes" or "no."

I tell them they can only communicate by blinking for yes or doing nothing for no. I change it up, I sometimes say shake head for no and arm up for yes. I then give them a choice between something they really would like, a sip of their favourite coffee and putting thier shoes on to go for a walk. I relate it to them so it is more effective. I ask and get it wrong so they have to sway me to let me know which they want. Sometimes I ask questions too quickly, ignore their response or ask them over and over again, exahusting them. Usually, by the third time I've asked them, there is eye rolling, big eyes, twinge of the lip. They all report feeling annoyed, wanting to hit me and feeling incredibly frustrated. You see the idea?

I have some of the best staff and our kids tell us so many things everyday about their happiness, fears, things they can't tell their parents, how they like things done and much more!

Without being able to relate to someone and communicate with them, I would have no trust with any of my clients. I have taught my clients many things, open them up to new adventures, assist them in personal care, but most of all, relate to them on a level that they sometimes miss in their lives. You can tell when they get a point across and they are so proud or when they make me laugh so hard I have to sit down, that is always the favourite!

I want all my staff to see this film and hope it gets into the Sprokets Film Festival. I think it is important that we as staff see what is not working, so we can look at ourselves and figure out what does.