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.