'I open up a world for kids to be able to participate in'

By Louise Kinross

I have a strong image of Laurel Robinson (standing above), a speech-language pathologist at Holland Bloorview. Laurel is always racing up the path to the hospital, or back down to the parking lot, pulling a cart on wheels behind her. The cart is packed with alphabet boards, picture displays, photos and technology she uses to create a way for children who don’t speak to communicate. Laurel, who is usually on the road driving to client's homes or schools, is always warm and bubbly. What I didn’t know about her is that she was born in Montreal, grew up in Saskatchewan, and studied in Alberta. She's also a sign-language interpreter and was a competitive synchronized skater growing up. We talked about her work at Holland Bloorview.

BLOOM: How did you get into this field?

Laurel Robinson: I started in pre-medicine. I knew I wanted to work with children. Then I watched a Monday night movie with my mom about a child who was non-verbal and used facilitated communication. It was a child who had been abused, and was in court. I didn’t know what alternative and augmentative communication (AAC) was, but I knew I wanted to do it. I did an honours in linguistics, and a major in psychology, to get into the speech and language pathology program in Alberta.

Before I began university I used to skate, but then I had surgery on my knee, so I had to stop. I decided to take some sign language courses instead, and I met the Deaf instructor, who worked at the University of Regina. I wanted to learn more, and we began meeting for lunch. I got immersed in the culture, because she introduced me to Regina’s Deaf community. While I was waiting to get into my master’s program to be a speech and language pathologist, I did the two-year American Sign Language program. The friends I’ve made through the Deaf community are my long-time friends.

BLOOM: My son primarily uses sign to communicate. It was our developmental pediatrician at Holland Bloorview who first suggested it. It’s always bothered me that sign-language instructors aren't part of the children's rehab model.

Laurel Robinson: It’s the medical model we all live in. Several years ago, I inquired here about whether we could bring on a teacher of American Sign Language, when the daycare at the Bob Rumball Centre for the Deaf was closing. I felt it was a piece that was lacking for our clients, especially in the school here. I wanted to connect and make courses for adults and parents who had children with disabilities who signed.

One of the biggest myths in our own profession is that technology is the answer.

BLOOM: Yes! Our culture worships technology.

Laurel Robinson: It’s not always the most efficient way for someone to communicate. For some kids, it’s a lot of work and effort. My role is to support communication, it isn't to give a device. It might include making a communication book, or assisting the family so they can learn more sign language. Some kids who are visual learners are like a sponge to sign language.

BLOOM: What is a typical day like?

Laurel Robinson: They’re definitely not the same. Our program goes out into the community. We consult and collaborate in the classroom with school teams, and we go into families’ homes to work with family and support staff. I’m on the road a lot. Communication happens everywhere, and our hope is to create a communication system the child can take anywhere and everywhere, to communicate with everyone.

Everyone is unique, and it’s not diagnosis-specific. We look at a child’s goals—what they need to communicate about, and participate in—and their physical abilities. The system comes second. The system needs to fit the child’s needs.

For some kids who have difficulty accessing technology, communication books and displays make sense. Sometimes we train communication partners in how to ask questions in a specific way, and to look for specific signals in a response from the child—such as a vocalization, smile or eye movement.

Some devices have face-to-face vocabulary and an integrated computer system so the child can access the Internet and social media. The iPad is an example. The iPad is great, because it’s cheap and all the kids use it, so it’s socially acceptable. But it doesn’t work for most of our complex kids. Not everyone can touch a screen with their fingertip.

BLOOM: What are the joys of your job?

Laurel Robinson: I don’t consider it a job. It’s something I’ve always wanted to do, and which I’m extremely passionate about. It’s very rewarding to see a child communicate for the first time.

I’ll never forget the first young girl I prescribed a device for. She was non-verbal. I was training her parents on how to use the device, and she was pushing buttons on it randomly, to figure things out. Then she looked at me and put her hand up. “Do you have something to say?” I asked. She nodded her head and pushed the button with the heart on it, which said ‘I love you.’ Then she gestured to her mom and her dad. Those were her first words to her parents.

I open up a world for kids to be able to participate in actively.

BLOOM: What are the challenges?

Laurel Robinson: I think the funding and resources are always a challenge.

Sometimes the challenge is someone who has very low expectations for a child. When I’m designing something, I say more is better than less. The more they have access to, the more the child can show us what they’re capable of.

I go into great classrooms all the time. But I also go into classrooms where the expectations are extremely low. That doesn’t fly with me. I can’t change that, but I can work in the home environment. I’m someone who can’t say no, because I care. Every child has the ability to communicate, and every child is communicating, and has the ability to do more. A child not learning isn’t the child’s fault. It’s our fault for not teaching them properly, and not having the right tools in place.

BLOOM: What kind of emotions come with the job?

Laurel Robinson: It can be very demanding, very stressful. We have heavy caseloads. The solutions sometimes don’t just appear. There can be a lot of trial and error, and many of the kids we work with are very complex. Every child, to a certain degree, is unique.

BLOOM: So you’re kind of starting from scratch every time?

Laurel Robinson: Yes. There isn’t a one-size-fits-all AAC system. It takes a very long time to do a complete assessment, and to find something that can work best for a child.

We work as a team here with occupational therapists, assistive technology consultants and communicative disorders assistants. It’s very interdisciplinary, and takes a full team approach to ensure a system is suitable. Our external partners include teachers, educational assistants and school board therapists. We might have 15 people around a table discussing what our goals for a child will be.

BLOOM: Is there anything you do to manage stress?

Laurel Robinson: I like to travel, and a couple of years ago I went back to skating. I had competed nationally at synchronized skating when I was younger.

BLOOM: What exactly is synchronized skating?

Laurel Robinson: It’s like synchronized swimming on ice. I love the team aspect of it, and it allows me to clear everything from my mind. I also do spin classes on Mondays and I love theatre.

BLOOM: If you could change one thing about how we approach AAC, what would it be?

Laurel Robinson: I think it’s understanding that technology is not the answer. That’s my biggest thing. Everybody feels technology is the answer, and unless technology is in place, a child can’t be a full participant. That’s a myth.

I’d also like to see mental health initiatives become a part of what we do, so we give children access to that kind of vocabulary and information.

BLOOM: If you could change one thing in children’s rehab, what would it be?

Laurel Robinson: Today, everything comes down to funding. We’re trying to change our service delivery model, to accommodate people on wait lists. But there’s a lot of behind-the-scenes work that goes on in creating communication materials. It takes a lot of time and thought and organization. It doesn’t easily fit into a numbers model.

When I started here, I felt I was able to do a better job, because I had more time to devote to each client. Now it’s ‘go, go, go,’ with an influx of referrals. It makes you have to work in a different way. As a human, and a health-care professional, it’s hard to not try to go above and beyond. That means doing things outside my 9 to 5 work. I still do those extras, because I care.

BLOOM: You and Elizabeth Baird did a No Boundaries project last year. Can you tell us about it?

Laurel Robinson: Working in Toronto, we’re in a very multicultural environment, and lots of our families have a second language in the home. But there are no multi-language communication materials. We decided to create theme displays and communication books in two languages—in English and in the language spoken by families.

We identified the five most commonly used languages by families at Holland Bloorview, and added French. So for grandparents or parents who don’t have a strong English connection, they have an opportunity to interact with the display in their own language.

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The film 'Deej' upends what you think you know about disability

By Louise Kinross

David James Savarese, known as DJ or Deej, has autism and doesn't speak. As a young child, he was placed in foster care. He was abused there, but couldn't tell anyone. Only after he was adopted by parents who taught him to read and write was he able to share his story, which is the focus of the film Deej, making its Canadian debut this Friday at Toronto's ReelAbilities Film Festival.

"Imagine for a minute," DJ says with a voice device in the film, "that...you are removed from your home for reasons no one bothers to tell you because you can't speak, so they assume you can't hear or think or feel." And later: "To this day, I question my humanness." The film follows DJ through a regular high school and into college, revealing a rich world that he expresses in poetry and as a playwright.

BLOOM: Why did you want to make this film? 

DJ Savarese: I wanted to show the people who said I was incompetent, that I’m not. I wanted to show people that they make wrong assumptions based on people’s appearances all the time. I wanted to show neurodiverse kids that they are needed and worthy of being celebrated.

BLOOM: What technology and support people do you use to communicate?

DJ Savarese: I can use almost any means to communicate: photos, AAC, manual sign language, writing, typing, and even my vocal cords. Because I still intermittently dissociate and lose track of my body, I travel with a support assistant whose physical resistance to my movement makes it easier to locate my hand—and body—in space.

BLOOM: At one point in the film you say 'no assistive device can do' what your mom does. What do you mean?

DJ Savarese: I mean that no assistive device can fill in when a paid support person is sick, or late, or quits, and all I need to do is look at her to remember I deserve respect, and I can handle it myself. 

BLOOM: Just to clarify, is the value of the support person (in addition to providing physical resistance) that he or she is a constant reminder that you're worthy of respect? Is it about the power of seeing yourself through the eyes of people who know you?

DJ Savarese: Yes and yes! I love your notion of seeing myself reflected in the eyes of those who 'get' me—yes.

BLOOM: We learn you suffered severe emotional trauma as a young child in foster care. You say that because you don’t speak, people 'assume you can’t hear or think or feel.' Why is speech associated with being human?

DJ Savarese: I’m not sure. You’d have to ask a neurotypical [person] that question, I think. Maybe it’s because developmental tests make speech a gatekeeping skill that keeps some kids from ever getting the chance to be taught to read and write.

BLOOM: You talk about a mission to “free your people.” Does this refer to non-speaking autistics, or all non-speaking people, or all people with disabilities?

DJ Savarese: I want the film to speak for all nonspeaking people, and I tell my story so kids with trauma and kids in foster care can see life gets better.

It might refer to any of those people, but it also refers to any of us who are not allowed to lead the life we want for ourselves because we are pigeonholed by society.

BLOOM: Your film touched me deeply, because I have a young adult son who doesn’t speak (he doesn’t have autism, but a rare disorder). He is able to read, but he’s never developed a fluid form of communication so he can freely express his thoughts. What can we do to empower people like my son?

DJ Savarese: Keep working with him to increase his fluid communication and explore a variety of ways to communicate. There are examples on Listen2Us of how to move someone who uses single words to sentences and from sentences to paragraphs.

I’m sure no one stops learning as a young adult.

BLOOM: What advice would you give to parents of a child who can’t speak, especially if they have an intellectual disability?

DJ Savarese: Visit my website at Listen2Us, and keep visiting it all summer as I finish it.

Ask yourself how you can possibly know your child has an intellectual disability if you aren’t able to understand what they know.

Try all kinds of communication with them: photographs, words, AAC, sign language.

Read to them a lot and ask them questions using answer banks. New ideas keep us from getting locked in our old ones. 

BLOOM: Do you think we can learn from people who have intellectual disabilities? Is there value to all kinds of neurodiversity?

DJ Savarese: There is value in every person, but I reject the term "intellectually disabled." It's a figment of the ableist's limited—and limiting—imagination.

BLOOM: How does writing poetry help you deal with memories of your childhood abuse?

DJ Savarese: It’s hard to put into words. It just does. If I can write a poem and strike a nerve in my reader, then I might still be sanely sad, but at least I’m safe and not alone.

BLOOM: Who paints the images that accompany your poetry in the film?

DJ Savarese: Em Cooper made the film awesome by offering an alternative to the camera’s outsider’s gawking stare. We collaborated online every week for months.

Here is her biography from the movie’s website:

Em Cooper is a British animation director specializing in combining oil-painted animation with live-action film. Her "striking, impressionistic animation" received critical acclaim across the British press in 2013 with the release of Kiss The Water (dir Eric Steel, BBC Scotland) for “gorgeous animation sequences in Munch-like swirls of colour” (The Observer/The Financial Times). In 2014-15 she created animation for Amazon Prime’s Emmy nominated children’s series Gortimer Gibbon’s Life on Normal Street. Em is a graduate of the Royal College of Art, Sundance Alumna and a winner of both the YCN Professional Award for Animation and the Gradiva Award for Film.

And here is the two of us discussing our collaboration of poetry and oil-paint animation.

BLOOM: Are you still studying creative writing at Oberlin College?

DJ Savarese: I am no longer at Oberlin College, but I am still a writer.

I graduated Phi Beta Kappa from Oberlin College in May 2017 with a double major in Anthropology and Creative Writing. An Autistic Self Advocacy Network (ASAN) Scholar Fellow, I was also the recipient of Oberlin’s William Battrick Poetry Fellowship and their Comfort Starr Award for meritorious scholarly work in Anthropology. My poems and prose have appeared in The Iowa Review, Seneca Review, Prospect, Disability Studies Quarterly, StoneCanoe, Wordgatherings.com, Voices for Diversity and Social Justice: A Literary Education Anthology, and A Doorknob for the Eye (Unrestricted Press). Links to my published work can be found on my website.

BLOOM: What did you learn about yourself at college?

DJ Savarese: I got an amazing education and stayed in my body for long periods of time.

I can teach and I love to teach.

I am synesthetic.

I care what happens to our planet, and its story is in flux all the time.

I assessed myself as able to write myself into a job, which I did.

I’m an artist, but my words are not like yours.

I’m interdependent, I’m not dependent; and people are safe if they’re interdependent.

I assessed myself as smart and made it so.

I love myself as I am.

BLOOM: Something we see in the film is how exhausting it is for you to control your body to fit in with social norms. After you’d been at Oberlin for a while, did you ever feel like you could let your guard down and be freer with your movements?

DJ Savarese: I loved Oberlin a lot, and, yes, once enough people knew who I was and told all of their friends and colleagues, I could move more freely around campus and the town.

BLOOM: Is acceptance an important idea for disabled people—meaning acceptance of their differences and not always working to “fix” or “camouflage” them?

DJ Savarese: I strive not only for acceptance but for appreciation and for need. I’m essential to the people in my life.

BLOOM: You talk about being exposed to gawking strangers. How do you deal with that?

DJ Savarese: I’m not as vulnerable to their stares as I was, but if I’m in my head, it can be sad to see myself in their eyes. I live down to their low expectations then.

But if I’m in my body, I can ask my assistant to talk loudly about my accomplishments and introduce them [the strangers] to a new perspective.

BLOOM: How many of your supports were covered financially by the government—or by Oberlin—and how many did your parents need to pay for privately? For example, I’m thinking of the assistant you had at night.

DJ Savarese: I received assistance from Iowa VR for 58 hours of support assistance for homework and a partial tuition stipend and book stipend from Ohio VR, and Oberlin paid for my support assistant during class time. I also received 35 hours per week of personal care assistance. In exchange for my support from Vocational Rehabilitation (VR), I was required to apply for 3 scholarships annually, which I did and received extra assistance with tuition and room and board that way. While I was on the waiting list for the home-based waiver, I never actually made it above #500; in fact, my position on the waiting list worsened over time.

BLOOM: You note that your mom lived in the town so she could help manage your support team. But you say that 'being included is every kids’ right, it shouldn’t be a lottery.' You obviously hit the jackpot when you were adopted by your loving parents. Did your dad teach disability studies before he adopted you? Or did he go into that after?

DJ Savarese: My dad went into disability studies after he met me but before he adopted me. I think he was in graduate school for English when we first met.

BLOOM: What was it like to watch the film for the first time?

DJ Savarese: I’m not sure if I can say this; I’ve seen it a lot, so it’s hard to remember what it felt like to watch it for the first time. It’s not easy watching yourself on screen. I’m greeting fear most of the time.

BLOOM: What do you hope to do when you graduate?

DJ Savarese: As I mentioned above, I graduated in May 2017. I’m currently working full-time as an Open Society Foundations (OSF)/Human Rights Initiative Youth Fellow. I also just completed Harvard's Kennedy School course on Leadership, Organizing, and Action. I’m working to make literacy-based education, communication, and inclusive lives a reality for all nonspeaking people.

Here’s a link to an online interview with OSF:

I’ll likely get a PhD, but I’m taking time to see what life is like outside of academia, and it’s been a lot of fun so far.

BLOOM: In high school in the film, you talked about writing a book. Are you working on one?

DJ Savarese: I haven’t written a poetry book, but my chapbook, a small paperback book, is A Doorknob for the Eye.

I’ve written my honours theses for Creative Writing and for Anthropology, but neither of them has been published. At some point I hope to publish a lot more. My website has links to most of my published work thus far. I hope to get more writing done this summer, when I take a break from travelling with the film for a while. I love writing, but it’s difficult to fit it in with two full-time jobs.

BLOOM: Can people follow you on social media?

DJ Savarese: I appreciate you asking. I’m not made for social media, but here are some ways you can follow my work:

www.djsavarese.com

www.Listen2Us.net

www.deejmovie.com

https://www.facebook.com/david.j.savarese

https://www.facebook.com/DeejMovie/

https://twitter.com/deejmovie?lang=en

 

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It's 2017, and speech technology is still primitive

By Louise Kinross

I like our Dear Everybody campaign because the messages, like this one above, are real, and come from our children and families.

Most people assumes technology is an equalizer for people with disabilities, and in some cases it is.

But in the 20 years I’ve followed the use of voice devices, and more recently, voice apps that can be used on iPads, I’ve never seen a product that’s nimble, intuitive and fast.

In fact, you may have heard our Dear Everybody radio ad with Gavi, who uses a communication device. What you may not know is that Gavi had to pre-program her comments. She couldn’t express them live, because it isn’t possible to use a device at the speed people speak.

Indeed, “the process is often extraordinarily arduous and fatiguing for the person using the device,” writes McGill University scientist Gail Teachman in a study in Qualitative Inquiry this month.

Last week I had Marna-Rose Minett in my office. She’s raising her seven-year-old granddaughter Rayne, who has cerebral palsy. Marna-Rose noted that Rayne uses her communication device at school, but “we don’t use it much at home because we can understand her speech, and she has to go through so many different screens” to put words together on her device.

“It's slow,” Marna-Rose said. “If she wants something to eat, first she presses ‘I’ and ‘want’ on the first screen, then she picks the icon for ‘food,’ then within food she has to choose between ‘breakfast,’ ‘lunch,’ ‘dinner’ or ‘snack,’ then she chooses what she wants.’” 

I likened this cumbersome process to a person needing to look a word up in the dictionary every time they wanted to express it. “Can you imagine if you wanted to say a word, having to flip through a dictionary and find it first?” I said. “And then, when you're finished with that word, you have to look up the next one?”

We both laughed wildly. But it wasn't “ha ha” funny, it was sad and despairing.

There is an app on the market—Speak for Yourself—which tries to keep the number of clicks needed to find a word to two. That’s an improvement.

But anyone who uses mainstream business or consumer technology would gasp in horror if asked to play around with the setup, capabilities and speed of these speech apps and devices.

That’s why a high number of children and youth abandon them. 

Recently, I was struck by how many people are instead using using a letterboard and spelling out words, letter by letter, which are then spoken by a partner, to communicate.

That’s how Japanese author Naoki Higashida, who has autism and is largely non-verbal, wrote his two books: The Reason I Jump and Fall Down 7 Times, Get Up 8.

In ABC’s hit Speechless, actor Micah Fowler communicates by selecting letters to form words with a laser pointer attached to his glasses.

One of our clients spoke to me the other day by pointing to letters to form words on his letterboard, while I spoke the words to confirm accuracy.

Over the years, I’ve seen scientists study why children and youth abandon voice devices. And I’ve always thought: “Why wouldn’t they?”

“I keep hoping that Apple will develop a voice app or device that is as intuitive and user-friendly as its other products,” I wrote in a blog in 2014. “However, I’ve been hoping that for more than 15 years. I even began a small campaign of tweets to Apple CEO Tim Cook last year that went unanswered. I think the big computer makers have let our families down in not bringing their expertise to the AAC table.”

Why is it okay, in 2017, that people with limited speech have to endure an “extraordinarily arduous and fatiguing process” as their only option for self-expression?

If current technology was sophisticated and speedy, why would a famous author choose to write his books by pointing to letters on a letterboard?

Why would my son prefer to use sign language, even though it drastically restricts who he can communicate with?

I have an idea for a scientist. I want a researcher to use a voice device for one week—24 hours a day—and not use the keyboard, because many young kids using devices can’t spell. Then, write a paper about how “easy” or “hard” it is to use, and how it compares to an Apple device.

I e-mailed my idea to scientist Gail Teachman, and this is how she responded: “I think a really important aspect of that researcher’s learning would be that NOT ONLY are devices slow, hard to use and clunky, but using an AAC device can be stigmatizing. The researcher would very likely experience social interactions where suddenly they are not seen as an expert, not smart…”

There would be “lots of being spoken to ‘like a child’ and an absence of the respect they are used to receiving from listeners. In short, what they have to say would suddenly be judged less valuable, less worthy of another person’s attention, less important and therefore, not worth the time it takes to listen.”

Why is that experience acceptable for children who struggle to speak?

Years ago, I spoke to the head of our research department about applying for one of Bill Gates’ Grand Challenges grants to develop an intuitive voice device. But the grant needed to create a life-changing solution for large markets of people around the world

The number of people using voice technology is relatively small. But it still makes zero sense to me why Apple or Microsoft wouldn’t choose to enter the market for the goodwill they would generate alone. The media stories generated would be solid gold.

Gail Teachman is a postdoctoral fellow at McGill University with the Views on Interdisciplinary Childhood Ethics team. Her research examines the moral experiences of children—their views on what it right and wrong, good and bad, and just and unjust—particularly in the context of childhood disability. 

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Disabled teen plays lead role without speaking? Hello 'Speechless'

By Louise Kinross

On Sunday, New York Times TV critic Neil Genzlinger wrote about "Speechless," a new ABC family comedy set to air tomorrow.

The series created a buzz in the disability community because 16-year-old JJ DiMeo, one of the main characters, has cerebral palsy and doesn't speak. 

Genzlinger tells us that he understands this world personally because his daughter, who has Rett syndrome, is non-verbal. 

In fact, Genzlinger says he watched the pilot episode while at Camp Communicate in Maine, which is for kids who use voice devices to communicate.

Not only is the show unique in casting a non-speaking person as a central character, but Micah Fowler, the actor playing JJ, has cerebral palsy himself.

Fowler is able to speak, but in the show he communicates by selecting letters to form words with a laser pointer attached to his glasses. A partner then reads them. 

Whoa! A disabled person playing a lead role and communicating with technology that's stigmatized in the wider world? This is earth shattering.

Scientist Gail Teachman, who worked as an occupational therapist for 20 years at Holland Bloorview, has researched how people tend to exclude high school students who use voice devices. In a BLOOM article, she notes that even when a teen gets good at using a device, out in the world "People don't stop, they don't wait, and they don't value what [the person has] to say."

To cast JJ, who labours to communicate, is as bold as "television's first single mother or black lead or transgender storyline was," Genzlinger says.

Watching the pilot at his daughter's camp, Genzlinger says the consensus among staff and campers was that whoever wrote the sitcom "gets it." And apparently he does. 

Creator Scott Silveri grew up with a brother who was non-verbal, Genzlinger says. He told Genzlinger he wasn't interested in a story "about" disability, but rather, about a family and the interplay among its members when one has a disability. 

Authentic representation of disability on TV, the stage and in film is a hot topic. 

In Los Angeles, the musical The Hunchback of Notre Dame is playing with John McGinty as the first deaf actor to portray Quasimodo, more closely resembling the deaf character in Victor Hugo's novel. For each of Quasimodo's songs, a singer joins McGinty on stage, while McGinty signs the song in American Sign Language. 

"One of the things I feel very connected with is sometimes I do feel excluded, and I do feel like an outcast," McGinty says in this piece in LA Weekly. "It's one of those things of being a deaf individual in a hearing world."

McGinty says he relates to the inner world of Quasimodo, even if he doesn't have similar physical traits, such as a crooked spine.

Earlier this year, I read this fascinating piece about the movie adaptation of R. J. Palacio's bestselling book Wonder, about a 10-year-old boy born with unusual facial features. "I won't describe what I look like," he says on the first page of the book. "Whatever you're thinking, it's probably worse."

The book is a fabulous account of what it means to look different in our society, and how others come to see him.

But instead of casting a boy with a craniofacial disorder, an actor will spend hours having his face altered with makeup and prostheses, then "fake" a speech impediment.

"We are inspired by seeing real minorities on the screen, not Caucasian actors cast as ethnic characters, and not actors pretending to have a disability or physical difference," writes Cynthia Murphy, who has Treacher Collins syndrome. "We are just asking for an accurate picture of how we live on a daily basis, and to see and feel the real deal."

I couldn't have said it better. 

Genzlinger in The New York Times says he hopes Speechless "breaks down the sense of isolation that envelops families like the DiMeos."

Making those families visible in an authentic way is a first, long-overdue step. We all long to see ourselves in mainstream storylines.

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How ideas about 'normal' speech silence children

By Louise Kinross

I read a fascinating story in Holland Bloorview scientist Barbara Gibson’s new book that looks at how cultural notions of what’s "normal" influence what we value in rehab.

The book is called Rehabilitation: A Post-Critical Approach.

The story was about a high school student whose most efficient way of communicating was to speak in a way that wasn’t intelligible by others—but which her mother could easily translate. The student was able to use a voice-generating device, but said it was slow, cumbersome and tiring. She only used it at school where no one understood her speech.

Which way of “speaking” is better? Using the voice device would give the student a higher score on a rehab test of “independent communication,” but the student said speaking with the support of her mother is much easier and faster. 

I reached out to Barbara and learned that this story was contributed by Gail Teachman, who worked for over 20 years as an occupational therapist at Holland Bloorview. She just completed her PhD in philosophy at the University of Toronto’s Rehabilitation Science Institute. Gail co-wrote one of the chapters in Barbara’s book.

Gail’s doctoral research involved interviewing 13 high school students who used alternative and augmentative communication (AAC) about what inclusion means to them. The term AAC is used broadly, to include voice devices, gestures, pictures, utterances and other ways of expression. Gail encouraged participants to communicate in their preferred modes and in any way they felt most comfortable.

“A lot started off wanting to impress me and show what a 'good' communicator they are using technology,” Gail said. “But once they relaxed into the interview, they more often relied on a family member as a communication partner and I was able to see how they more typically communicate.”

All chose to have a mother or sibling participate so that they could use speech or gestures, which their family member translated, to save energy.

“Even as a seasoned AAC clinician, I understood very little of their speech. This is not speech most people would understand at first. It was like having a door opened to a room that I had never been in because the person felt comfortable and the family understood just about everything the youth said. It was a privilege for me to see that these families have learned to understand their child’s communication in ways that are different but no less valuable. It was so rich and so moving.”

At the same time, Gail said, the teens and young adults noted that they can’t converse this way in public because “it’s devalued there.”

Ironically, many of these youth, who are labelled “non-speaking,” speak all the time at home, Gail said.

“One of the things I looked at in my research was why we put so much emphasis on what we call ‘independent communication.’ We could do so much more in our work to advocate for communicative competency as being a shared concept. That it’s not about changing the way ‘they’ communicate, but to turn it on ourselves and consider how socially we’re stuck in thinking there’s only one way to communicate: that approximating oral speech is the best way. Instead, we might consider our own ability to converse with people who talk in different ways.”

Gail said some great work is being done about communication as a shared concept at Communication Disabilities Access Canada. 

Typically, Gail said, people who use different ways of communicating have been excluded from participating in research. “It’s thought that they wouldn’t be able to respond to questions, or that their responses wouldn’t be valid. My research used the work of sociologists and linguists to argue that if a person is communicating—whether it’s with a device or facial expression or dysarthric speech or with a communication partner who understands them—their talk is no less valuable or true.”

Her research also found that using a voice device is devalued in society at large.

“I found that even when a person became quite competent at using a device, it didn’t mean that when they went to the mall they felt included. Participants told me: “People don’t stop, they don’t wait, and they don’t value what I have to say.” The technology itself can be intimidating and discourage interaction, Gail said. 

One young man who joined a wheelchair hockey league talked about how no matter how much training the coaches had, they talked to him like he was a little kid. He felt that because he used a voice device, they assumed that he wasn't very smart.

The youth in Gail’s study preferred to go places with a parent or support worker because it “helps them feel safe and able to interact in a world that is constructed for people who use clear oral speech. But that’s termed ‘dependency’ and is too often considered lacking in some way.”

She stressed how much we inadvertently limit youth when we overemphasize the value of independent speech. 

“It may take five minutes for someone to make a sentence on a device and that’s exhausting,” Gail said. “Without question, technology can improve the lives of children with communication impairments. But with certain questions they could turn to a communication partner and basically say ‘Can you take this one for me?’—and because of their shared history, the partner can help them get their message across more easily. As long as we hold up independent speech as the best way to communicate, we only allow ourselves to see a part of what that young person wants to share.”

Stay tuned for more on what high school students in Gail’s research said about inclusion. 

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I wish I'd seen the beauty of sign language years ago

By Louise Kinross

Last night was fun. I got to tell a story in American Sign Language (ASL) about a funny incident that happened when I was a teen. I was doing a test for a sign language course and we had to to tell a story about growing up. 

Mine involved my 16-year old self, my best friend, a bottle of rum that our old babysitter bought for us, and an encounter with the police late at night as we lay on the grass looking up at the stars.

In preparing for it I got to look up many signs on Handspeak, which is a wonderful site where you can watch video clips of different signs.

I also typed out my story, but in the word order that is used in American Sign Language (ASL), which differs from English.

When my son was young, I tied myself up in knots over whether to use signs in English or ASL word order.

"ASL is a language completely separate and distinct from English," according to this description from the National Institutes on Deafness and other Communication Disorders. "It contains all the fundamental features of language—it has its own rules for pronunciation, word order and complex grammar."

Instead of recognizing the beauty of ASL as a rich language that stands on its own, I was always translating signs into English and then fretting that it wasn't "proper English." How would this affect my son?

So, for example, to ask someone's name in sign language, you use signs that translate as "You name what?"

We ended up using ASL signs, but in English word order because we were also speaking at the same time we were signing.

This meant we were never fully immersed in ASL and deaf culture. 

We were, as they say, sitting on the fence.

I think this happens to a lot of families when their kids with disabilities are young. They are bombarded with different therapies, techniques and approaches and advice from professionals and other parents and just about anyone on the street who will chime in to give their opinion.

What if I make the wrong decision? What's the right decision? 

Meanwhile, all those years ago, in terms of communication, I was conflicted about whether we should use sign at all. It isn't generally recommended by therapists who prescribe augmentative communication (voice devices, picture boards etc). "No one in the community will be able to understand him," I was told.

And it wasn't something that my son naturally took to because of his weak fine motor skills. On the other hand, most of the "words" my one-year-old daughter had were signs she'd learned from us signing to our son.

When we were out and about I felt self-conscious about signing. I wanted to blend in like the rest of the young families in our neighbourhood. I still "cared" about what other people thought of me (ha ha, how times have changed).

We tried to do everything: sign, pictures, a voice device, years of speech therapy. 

There are so many value judgments about all of these things, and even value judgments about approaches within each area. 

Of course speech is the most highly prized, which can push parents like myself to pursue it for years and years, even though the child is not showing any functional gains (or maybe that was just me, maybe I just didn't see the light).

My son has chosen sign language as being the mode of communication he's most comfortable with, and that is most efficient. He's still limited in what he can express because of his fine motor issues, which means we can't get a really rich understanding of his thoughts. But it is his language. 

A few months ago a person who's helping us with life planning suggested that we needed to get on board with sign language in a bigger way. I think she was surprised at just how little signing my husband and I did (and our other kids, despite going to sign language camp for years, do none. It had stopped being "cool").

So my husband and I took a course and a couple of our workers did too (when our son was very young, we'd gone to an immersion program and also had weekly lessons from a tutor).

I adored my sign language teacher this time around. 

She told the most amazing stories that always had us in stitches. Part of it was how visual and dramatic sign language is. It's so much more than hand signs, it's facial expressions and body movements and sounds. It's often like theatre.

I began to see how full and fun this language was.

The other day we went by our favourite party shop and my son was very upset to see a sign that said the store was moving.

He was looking in the window when one of the staff came out. She recognized him as he loves costume gloves and has bought many pairs there. They were selling everything at half price before their move, and she said she'd found a box of gloves in the basement that she wanted him to have.

This was like Christmas for our son.

But what was so interesting to me was after we left, he signed: "New building where?"

He was asking me where the new store would be located.

What stunned me was his use of the sign for "building," which I hadn't seen for years.

In the last couple of months, since we've begun consistently signing with him, he's starting to string more signs together in a sentence, and to surprise us with signs. 

In the past, we've often expected him to express himself in silent sign while we, and everyone else around him, "talk, talk, talk." 

Now I realize that we weren't entering fully into communication with him. We weren't giving him the message that sign language was this rich, credible language that was worth using. We kind of expected him to use it as a default, while we never learned more than the basics (which spoke volumes), and kept on chattering.

I'm excited about where things may go from here.

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An artist is born

By Kevin Vieira

Whether sitting at the piano, strumming a guitar or drumming with whatever he can get his hands on, my son Joseph (above) makes music.

Joseph is seven years old and has cerebral palsy. Joseph is also non-verbal (so far), yet he has a voice: a computer-generated voice that is produced in response to the words he selects or types into his computer.

This technology that has become the greatest source of liberation for our son—liberating his ideas which are as uncensored, funny, sometimes hurtful, deep and poetic as any child’s.

This is where the story begins. In finding his voice, Joseph also found opportunity, friendship and music.

Paul Alcamo, Joseph’s senior kindergarten teacher at the Bloorview School Authority, recalls meeting Joseph at rehearsals for a student song CD he was producing, when Joseph was just in junior kindergarten.

“A very articulate, voice-device-using boy named Joseph told me that he couldn’t sing,” Paul remembers. “I was temporarily stumped to find a way to get him into the songs and encouraged him to use his voice in his way. The accuracy of the notes didn’t matter as much as he made a joyful sound with us. That didn’t sit well with this very soulful and intelligent boy. For close to six months that also stayed with me in the back of my mind.

“Joe was then placed in my class for his senior kindergarten year…At one point early in the year I decided to save some of the writings of this witty and profound child. As well, the nagging feeling that I had to find a way for his voice to make it into music stayed with me.”

Joseph’s teacher Paul approached his friend Adrian Moody, a producer at the Ashley Ingram School of Music, for help. And, for reasons I will never understand, Adrian agreed to meet with Joseph and our family.

The meeting with Adrian (AJ) at the studio was unforgettable. AJ was very warm and welcoming, treating us to a tour of the studio that was complete with gold records on the walls and photos of some of the biggest pop stars in the world who had recorded there. AJ and Joseph hit it off immediately. Both fed off the other’s enthusiasm and sense of humour, both completely fascinated by the other.

We finally entered the studio where AJ and Joseph would record together. I apologized for not having a clear musical idea or even a complete song and handed over Joseph’s lyrics for his song That Thing. AJ was immediately excited and optimistic that something special was about to happen, and proceeded to transfer Joseph’s lyrics, as spoken by his computer, onto one of the studio computers. Then he asked Joseph for more lyrics.

“Gimme something,” AJ said, and Joseph responded, typing new lyrics on the spot onto his computer. With AJ’s support and encouragement, Joseph delivered.

After all the lyrics were recorded, AJ demonstrated how he would manipulate the digital voice recording from Joseph’s computer, by making pitch changes and varying the length of his words to emulate a singing voice. It was of course a transformative moment.

There was lots of laughter, shouting and high-fives. Joseph's emotions ranged from disbelief to joy to immense pride and validation.

It was a moment where everything changed. I had never heard or imagined anything like it. In an instant, a world of possibilities opened up. In an instant a wall of limitation came crashing down. AJ Moody and Paul Alcamo had changed the world for Joseph and many like him who are sure to follow.

This is how AJ describes it:

“I had been trained to treat everyone in the studio as an artist, and I was determined to approach this project with the same level of care and professionalism. When Joey and his family arrived, I knew that I wasn’t just treating someone like a star: Joey is a star. He was engaged, energetic and inspiring to work with. Using technology and software we often take for granted in the studio, I was able to work with Joey in creating a song that gave him his musical voice. I had no idea of the impact it would have on him, his family, his peers, or myself.

“Joey taught me that expression is not about what we see or what we expect, but truly about being free to express what lies directly in our hearts. In fact, the result was so powerful to me, I quit my job and founded a nonprofit organization—called Music Without Barriers—to help Joey and people all around the world find their voice, access music no matter the barriers, and give everyone the chance to shine.”

Joseph presented his song That Thing at the Breaking the ICE (Independence Community and Empowerment) conference in Toronto in 2012. At just five years of age he introduced it by saying he “wrote it to get rich” and was “still waiting,” to uproarious laughter. When his song played, it brought the roof down.

What Joseph, AJ and Paul accomplished together changed the lives of many of the people in that conference hall that day. That Thing has that kind of power because it’s not just a great piece of work for alternate communication users; it’s a great song, period. And, at the heart of it is a young boy with a big voice, big ideas, and lots of swagger.

Joseph may just represent a new beginning in what’s possible—and a new attitude in what’s acceptable—for this generation and future generations of alternate communication users.

The song That Thing (below) is available on iTunes. Check out AJ's Music Without Barriers. 

That Thing

By Joseph Spahn-Vieira


That thing, that thing, that thing,

Don't be scared . . .

That's right I said it, I said it,


Don’t, don’t doubt,

That thing that thing that thing that thing,


Don't be scared,

don't be scared, it's better to love than to like . . .


I worked with you and you worked with me, so don't be scared,

The hearts fall like rain into my lunchbox, I take them out and give them to you . . .


it's a little bit of this, and a little bit of that,

That, that, that, that thing . . .


Don’t be scared,

don’t don’t doubt,

Don’t be scared,

don’t don’t doubt,


That thing that thing that thing

Don’t be scared,

That's right I said it,

Don’t, don’t doubt.

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When is giving up a rehab goal a smart thing?

By Louise Kinross

Children’s rehab is often focused on improving a person’s ability in a specific area or in achieving functional goals.

The use of  “goal” language seems to be directed primarily at children with disabilities. As a kid without a disability, I don't recall a lot of talk about my goals growing up. I didn’t feel external pressure to “reach my potential”—which seems to be the marker for success placed on every child with a disability. 

The idea of achieving your potential implies that we all have a fixed amount, a certain size of box, if you will, from which we can draw a limited amount of ability. Some have larger boxes, some have smaller ones, but at some point we can measure or see whether a person has made full use of their “box.” Or can we?

I was thinking about this because as my son gears up for a year of full-time co-op—his last year of high-school—I found myself agonizing over the fact that he still doesn’t have a reliable form of communication. What is holding him back in his co-op is the ability to communicate freely with the public. He has a voice app on his iPad—Proloquo—but he doesn’t like to use it. He would rather gesture or have his signs interpreted by an EA. 

His report card noted that he has to start using Proloquo more. That got me wondering whether we should look at a different voice app. And that led straight to hopelessness. Because I’ve looked at all of the devices and spent years trying to find something that works for him. I am sure that full months of my life have been devoted to programming systems that were never adopted long-term.

I keep hoping that Apple will develop a voice app or device that is as intuitive and user-friendly as its other products. However, I’ve been hoping that for more than 15 years. I even began a small campaign of tweets to Apple CEO Tim Cook last year that went unanswered. I think the big computer makers have let our families down in not bringing their expertise to the AAC table.

That said, my son is a young man now, not a small child, so any use of a voice device will depend on it being something that he wants, not something that is thrust on him.

Despite my cynicism, I found myself online looking at videos of children using different voice apps and wondering why my son’s use had never taken off in the same way. It wasn’t for lack of enormous efforts on my part. In my son’s defence, I find them cumbersome and slow and not easily portable. I personally wouldn’t want to use one. 

Last week I saw this headline in the New York Times and got a sick feeling in my stomach: The Kids Who Beat Autism. Has autism become an opponent?

The article refers to two small studies that showed that 10 per cent of kids with autism “shed” their symptoms, but there didn’t seem to be any rhyme or reason as to why (they included kids who didn’t receive intensive ABA therapy). “Recovering” from autism is positioned as the “optimal outcome” and we’re made to feel terribly sorry for the families whose kids don't progress.

(Though there is this beautiful final paragraph where a mother of one of the unrecovered shares her thoughts: The idea that Matthew won’t recover no longer pains Jackie. “At some point,” she told me, “I realized he was never going to be normal. He’s his own normal. And I realized Matthew’s autism wasn’t the enemy; it’s what he is. I had to make peace with that. If Matthew was still unhappy, I’d still be fighting. But he’s happy. Frankly, he’s happier than a lot of typically developing kids his age. And we get a lot of joy from him. He’s very cuddly. He gives us endless kisses. I consider all that a victory.”)

Thankfully, the magazine piece was followed by this post in Motherlode called The Kids Who Don’t Beat Autism, by Bad Animals author Joel Yanofsky, who has a teenage son with autism.  

Yanofsky notes that when he saw the headline—The Kids Who Beat Autism—“I didn’t want to discover all the things my wife, Cynthia, and I could have done and didn’t. That thought keeps me up enough nights as it is.” I think it's dangerous and wrong when parents are made to feel that they control the outcome of their child’s disability. And we don’t need our kids to beat or stand in opposition to something that is a part of their identity.

Recently I was reading Think Like A Freak, the new book from Steven D. Levitt and Stephen J. Dubner, the authors of Freakonomics. In Think Like A Freak, the economist/journalist duo encourage us to take a new approach to solving problems. What intrigued me was their final chapter—The Upside of Quitting—in which the authors argue that giving up unattainable goals is a smart move.

I wondered how this idea might be helpful to parents of children with disabilities like me.

Levitt and Dubner note that quitting anything is tough because of American homilies like: “A quitter never wins, and a winner never quits.” In Western culture quitting is synonymous with failure, they say. And once you’ve invested heavily in something, it feels counter-intuitive to quit. However, “You cannot solve tomorrow’s problem if you are not willing to abandon today’s dud,” they note.

“Civilization is an aggressive, almost maniacal chronicler of success,” they write. “This is understandable—but might we all be better off if failure carried less of a stigma? Some people think so. They go as far as to celebrate their failures with a party and cake.”

They then recount how scientists in an invention lab at a technology firm test out ideas, with the goal of ‘failing fast and failing cheap,’ when necessary. The head engineer prefers the terms ‘failing well’ or ‘failing smart.’

They also reference a series of small studies by Carsten Wrosch, a psychology professor at Concordia University, that found that people who let go of unattainable goals saw physical and psychological benefits.

“They have, for example, less depressive symptoms, less negative affect over time,” Wrosch is quoted as saying. “They also have lower cortisol levels, and they have lower levels of systemic inflammation, which is a marker of immune functioning. And they develop fewer physical health problems over time.”

Of course Wrosch notes that deciding when a goal is unattainable “is the $1 million question.”

There are all kinds of studies showing that mothers of children with developmental disabilities have higher levels of anxiety, depression and chronic stress, as well as reduced immune function and increased cellular aging, than those raising typical kids. They also have poorer physical health.

I’m just wondering what part our “Anything is possible” and “Just Do It”  culture plays in keeping parents trapped in rehab goals for their kids that may not be attainable? I know it won't be a popular idea, but it seems that for many parents “letting go” of a hoped-for, but not practical, outcome could be physically and mentally healing.

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A mom's passion for AAC eclipses her son's

 










By Stacey Moffat

My son Carter and I recently attended our first Breaking the Ice Conference for people who use augmentative and alternative communication (he's holding his voice device in the photo above). This year the conference offered a children's program I thought Carter would enjoy. We attended for the full day so Carter could participate in the children's program and then we'd have lunch together and watch a Town Hall meeting with adult AAC users.

As the day approached I was excited about how great it would be for Carter. He'd have fun and be inspired and motivated by others who use talkers just like him.

But by the end of the conference day, my rose-coloured glasses were a bit tarnished, I think. Carter was eager to attend the children’s program and enjoyed tracing his body and then decorating the craft paper with information about himself (see masterpiece posted behind him above). But if he'd had his way, we would have headed home after that.

Carter was the only person with a talker at the event who walks, and it was a real challenge because he didn't want to sit down. Inbetween activities he kept busy going up and down escalators and was having so much fun that when I told him we were all done and it was time to go back to the event, he had a meltdown. 

After we ate, I introduced him to Jess and Emily, two amazing young ladies I met last year when I attended a condensed version of the conference. Carter liked looking at the girls' talkers because they were different from his. He examined their name tags and was thrilled to be able to say their names using his talker. Jessica is programmed into his people page because it's his teacher's name and Emily is programmed into his toy page because it's the name of one of his toy trains.

But these encounters didn't last long.

Carter was determined to find the perfect spot to play with the Lightning McQueen car he takes everywhere. I let him wander while I stayed in my seat and tried to keep an eye on him. A lovely conference organizer noticed my craning neck and offered to walk around with Carter. The two ended up cozied up in a corner reading books while I watched a presentation about AAC mentors put on by Barbara Collier of CDAC and several adult AAC users. Of course I'd already heard about the program and signed up for a mentor!

I've felt a strong pull to the AAC community because Carter hasn't officially been diagnosed with anything other than global developmental delay. That means we've never had a place in any one disability group, like autism, cerebral palsy or Down syndrome. As a result, I think I've been on a mission to embrace the AAC community as "our group."

But it's a diverse group and it's a challenge connecting with members because the opportunities are few and far between. I guess it's natural that when I hear about something, I jump at it. But sometimes I lose sight of what it is I'm looking for, and whether it's suitable for Carter.

In reflecting on our experience at Breaking the Ice, I realize that while I'm driven to take part in all things "AAC," my nine-year-old son, like most young boys, isn't.

When we finally sat down for the Town Hall meeting, Carter pointed to the door and signed "car" over and over again. Thankfully, a mom who I’d met earlier and whose son was in the children’s program with Carter, came along with her iPad. She put on a TV program for Carter to watch (without sound) and that kept him somewhat entertained.

Once things got underway with the meeting, I hoped Carter might listen to the AAC users who answered questions (they'd been given the questions in advance so they could prepare). The questions included "What inspires you?" and "What keeps you motivated when conversations move too fast and it becomes difficult to add your own comments?"

Several wonderful responses were shared. Comments like Jess's brought tears to my eyes: "I am inspired by my mom. She has always been there for me. She is an incredibly strong, outgoing individual who never gives up on anyone. Even if she's going through a rough time, her courage and strong will inspires me."

In hindsight, I can't blame Carter for not taking an interest in what the adults had to say. I'm pleased we were able to attend a small portion of the meeting, but I recognize that the meeting was much more interesting for me than it was for Carter. What nine-year-old boy wants to sit through a meeting of adults? 

Perhaps the best is yet to come from our experience at Breaking the Ice, and that's the opportunity to provide feedback to the conference committee.
I can think of lots of activities that Carter and other children who use AAC might find motivating for future sessions (beyond riding the escalator!). Maybe they could have a Town Hall meeting of their own. By sharing my input, future conferences can be shaped in a manner that will draw more young families like ours, resulting in more participation from children.

I'll continue to get involved with AAC events because I enjoy connecting with others in the community and I want to stay educated. I'm glad that I finally have a community to embrace. But from here on in I'll think more carefully about Carter's involvement. Instead of feeling the need to take part in an event just because he's an AAC user, I'll first consider what Carter might get from the experience.

Will he truly enjoy himself, or would he be happier hanging out at home?

Stacey Moffat is a former teacher raising her three kids. She volunteers with ISAAC Canada on the Executive Committee. She blogs about raising a child who communicates differently at More than Words.

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