'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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Off-duty officer kills non-verbal man, injures parents in Costco

By Louise Kinross

This is a horrifying story for all of us in the disability community who love someone who doesn't speak, and may not be able to comply with police orders in conventional ways.

On Friday night, Kenneth French, 32 (in photo above right, with his parents), was shot and killed by an off-duty police officer in a California Costco store. The officer also shot and critically injured French's parents, who were grocery shopping with him.

Police, speaking to reporters just after the incident, said it happened after an argument between two men. According to this news release from the Corona Police Department, "Without provocation, a male unknown to the officer's family assaulted the officer while the officer was holding his young child. This attack resulted in the officer firing his weapon, striking the male and two of the male's family members." The child was not injured.

However, French's cousin, Rick Shureih, told the Los Angeles Times that French was nonverbal and had an intellectual disability, so a verbal argument wasn't a possibility. 

"Speaking about his cousin, Shureih told the paper, 'He was a gentle giant...He's never been violent in the past. He's always been very cooperative and kept to himself.' Shureih said it's possible his cousin may have bumped into someone but he wouldn't have been able to communicate that he was sorry."

Police have not named the officer involved, who was released from hospital with minor injuries. 

This BBC piece 'Don't shoot, I'm disabled,' looks at the hundreds of people with disabilities who are killed by police in the United States each year, because they don't respond in conventional ways to police commands. It could be a person who is deaf, or mentally ill, or who, like French, has an intellectual disability.

In a more recent Los Angeles Times piece, we learned that the French family was from Toronto. "Sandra Serrao, who lives in the Toronto area and has been friends with the French family for more than a decade, said the couple and Kenneth moved to California from Mississauga a few years ago to help care for [their] elderly parents...She said Kenneth French was not the type of person to provoke anyone..."

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Friday bonus watch

This short film about living with a dad who has cerebral palsy, uses a wheelchair, and communicates with a pointer and letterboard, is now available on YouTube. My Dad Matthew is seen through the eyes of Elijah, who was then 14, and considers his father Matthew “a pretty normal dad.” 

Want to hear directly from Matthew, who's a professor in disability studies at Northern Arizona University? Read our interview with him. Happy Friday!

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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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'Being included is every kid's right'

By Louise Kinross

Get ready for the Canadian premiere of the film Deej next Friday at The ReelAbilities Film Festival at Innis Town Hall at the University of Toronto. 

"No non-speaking autistic has ever lived like a typical college student," says David James Savarese, known as Deej, in a film that follows the Iowa student's life for six years. Deej suffered severe emotional trauma as a young child in foster care. "Imagine, for a minute, that you don't have speech and 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 her or think or feel," he says. Deej's world changed when he was adopted by loving parents and learned how to read and write.

Deej, who graduated from Oberlin College last year with a double major in anthropology and creative writing, has agreed to do an interview with BLOOM. 

Look for it early next week. In the meantime, watch the trailer. 

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'He's a pretty normal dad'

By Louise Kinross

“When I was seven, I asked when I was going to get my chair,” says Elijah Wangeman, 14 (above left), in an unedited version of My Dad Matthew. The six-minute film is about Elijah’s life with his dad Matthew (right), who has cerebral palsy, uses a wheelchair and communicates by moving a pointer on his helmet to letters on a board. For Elijah, Matthew is “a pretty normal dad.” So as a child, Elijah says he imagined that he too would use a wheelchair when he got older. Matthew is a professor in disability studies at Northern Arizona University. That’s where Matthew met filmmaker John Schaffer, when John was studying special education. On Thursday Feb. 23 at 9 p.m. Eastern time, John is live streaming the world premiere of his film My Dad Matthew on Facebook. John says he hopes viewers take away “a new perspective on disability.” BLOOM interviewed Matthew by e-mail.

BLOOM: What do you teach at Northern Arizona University and why?

Matthew Wangeman: I teach disability studies and I absolutely love it! My job is to essentially challenge how my students think about disability. In fact, we developed the disability studies minor about 10 years ago to combat what people with disabilities and their family members said was the greatest barrier they faced in Arizona—the attitudes of others towards people with disabilities. I really feel I’m doing my life’s work at Northern Arizona University. What keeps me going is when I hear my students talk in the senior seminar course that I co-teach—it’s like they are completely different people. They really think about disability as a problem with society not being willing to really embrace people who are different. To me, that is how you begin to change society for the better for people with disabilities.

BLOOM: What was the greatest challenge growing up with your disability?

Matthew Wangeman: Probably my greatest challenge was trying to convince my Mom that I really needed to go to college! I somehow knew education would be my only key to even have a chance to have control in my life. I always say I have been extremely fortunate in my life and often I think my path could have gone in so many bad directions. I could, and probably should, write a book about growing up in two residential schools for crippled children.

BLOOM: You seem to have a very open, humorous, joyful outlook on life. Do you have a philosophy that shapes the way you live?

Matthew Wangeman: Yes, I love to laugh and I love to make people laugh. I often say I’m a ‘sit-down’ comic. I just think with humour people open up more and they’re open to understand and really think differently about a subject. Life is way too short to live life too seriously and people just like being around funny and happy people.

BLOOM: You say attitudes can be most ‘disabling.’ Can you give us an example?

Matthew Wangeman: I have never had a job that pays me for what I am truly worth. I really feel that is because of attitudes of others towards me, because I have a significant disability. I went to one of the best universities on this planet and that was UC Berkeley. I even earned a masters of city planning and was in a PhD program at Berkeley that I didn't finish. Even if I had finished my PhD, I don't think it would have made a difference because of people's attitudes towards me as someone with a significant disability who can't orally speak. This will always frustrate me.

BLOOM: You have a significant physical disability but have achieved great success academically. How can we break through stereotypes about people who have an intellectual disability? Even in the disability community, intellectual disability is stigmatized?

Matthew Wangeman: Yes, this a problem and it shows people with disabilities are just as guilty of discrimination against other people with disabilities. We must practise what we preach, but humans are flawed people and in order to feel good about ourselves it seems we must put down other people. I really don't know how we fix it, but we must continue to confront this ugly problem.

BLOOM: I would like to see us change the way we view human value—so we don’t base it on what a person does—but see it as inherent to each person, simply by virtue of being human. Do you think people should have to ‘earn’ their value by being productive in a conventional way?

Matthew Wangeman: I happen to think the value that we place on people as part of a capitalistic society is probably one of the most harmful things we do to people with significant disabilities. People should never be judged by how much money they make, because it's so arbitrary. I love sports but it's ridiculous that someone would make $5-10 million dollars for hitting this round ball with a bat 400 feet! It makes no sense.

BLOOM: Your son Elijah provides a lovely perspective to the story. How have his insights impacted your thinking?

Matthew Wangeman: Probably what my son has taught me the most is disability to him is typical. I am not saying that he is free from discriminating against people, because we all discriminate, but I do think he is much more open to other people who are different and in that way we can learn from him.

BLOOM: What advice would you give to parents whose child has significant disabilities?

Matthew Wangeman: Just believe in your child and always question everything!

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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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Clinicians must better respect children's 'agency,' ethicist says

By Louise Kinross

The other day my son had an interview to volunteer in a cat adoption centre in a PetSmart.

He can’t speak and doesn’t have a robust form of alternative communication, but he can use some sign language.

That night, when I asked him about it, he signed that there were two cats. They were black and white.

(I’m now not sure if one was black and one was white, or if they were both a mix of the two colours, or if one was a solid colour and the other wasn’t. It’s amazing how much you can lose when communication is fuzzy).

They were small, he signed. He got to pet them. In his job he would feed them and clean their cages and do paperwork for adoptions.

“What were the cats’ names?” I asked.

 He made the sign for ice-cream (which in a different context could also mean “lick” or “lollipop”).

“Ice cream?” I said.

 No, he signed.

 Licky Tongue? This is a Pokemon character he used to like.

 No.

“What is the first letter in the name?” I said. I grabbed a piece of paper, a pen and a book he could write against and thrust it upon him.

I felt like a desperate contestant on a game show.

He kept repeating the original sign. He didn’t want to write down a letter because it’s hard for him to write.

“Please, just the first letter.”

Finally he wrote an “L.”

“L?” I asked.

Yes he signed.

“/l/” I said, sounding the letter out phonetically.

“/l/ is for lollipop,” I said, referring to the Jolly Phonics system we’d used years ago to teach him to read.

Yes! he signed exuberantly.

“Lollipop?” I said. Was this a clue or the answer? Unfortunately, the wheels don’t turn that quickly in my mind anymore.

“Lollipop is the name of the cat?”

Yes, he signed. Then he began to clap.

“The cat this morning was called Lollipop,” I yelled out enthusiastically to my husband.

I felt like I’d hit the jackpot on Jeopardy or just won a brutally competitive game of charades.

“What was the other cat called?” I said.

My son looked at me blankly. He got up and walked into his room. I couldn’t blame him for giving up.

About 10 minutes later I was still thinking about the cat called Lollipop.

One of the cats was black, he’d said. Suddenly “Licorice” popped into my mind. Licorice would be the perfect name for a black cat.

I raced into his room: “Is one of the cats called Licorice?”

“Yes,” he signed.

“Licorice and Lollipop!” I exclaimed. I gave him a high-five and screamed out the news to my husband.

Then I texted the worker who was with Ben that morning. “Was one of the cats called Lollipop?”

Sometimes my son gets so frustrated with our inability to interpret what he’s saying that he’ll sign “yes,” just to get me off his back.

“Yes,” the worker wrote back. “He read the cat’s name on the adoption paper.”

“Licorice?" I typed in. “What about Licorice?”

“Yes.”

It had taken about 30 minutes to determine that the cats Ben saw were in fact called Lollipop and Licorice.

But what if I’d stopped guessing after getting “ice cream” wrong?

I shared this tale last week at a talk by Dr. Franco Carnevale, ethicist and psychologist at McGill University. Dr. Carnevale worked for decades as a nurse in the pediatric intensive care unit at Montreal Children’s Hospital. 

Dr. Carnevale asked how we can better hear the voices of disabled children in healthcare, particularly those with intellectual disabilities or who can’t speak. The question is on the agenda of VOICE—an interdisciplinary research team he’s leading to identify and address ethical issues in Canadian children.

Dr. Carnevale encouraged us to think of children as agents “who have a capacity and intentionality to engage and form meaningful preferences and to direct those preferences in a way that matters. They have an intentional, meaningful engagement with things that matter to them.”

He said the concept of a child’s best interests must be “highly informed from the child’s agency, from their expression of interests.”

This is particularly challenging when a child can’t communicate in conventional ways. “We consider all young people as vulnerable, but there are all kinds of ways that young people who have any form of compromise in their expressive capacity are additionally vulnerable and marginalized," Dr. Carnevale said. “We don’t have a clear way of understanding how things matter to them. Does that mean their voices matter any less?”

Dr. Carnevale spoke about how solving ethical issues in medicine usually centres on the child’s “best interests. But there’s no agreement on what that is," he said. “When we do case consultations, people make rival claims on what is in this child’s best interests.”

He noted inherent problems with the way we assess best interests.

“The interests are being evaluated and declared by adults without the recognition that adults have interests that may not be congruent with the child” he said. “There is an inescapable subjectivity when adults—healthcare professionals and parents—assert what is in the child’s best interests.”

Dr. Carnevale said we tend to systematically underestimate children’s ability to participate in treatment decisions. In addition, our understanding of capacity is poorly developed and often arbitrary. “You either have capacity or you don’t,” he said. “There’s a threshold. If you’re below that, what you want and how it matters has no ethical weight. I worry deeply about the common ‘all or none’ tendencies among clinicians' views of mental capacity.”

When considering what’s best for a child, “suffering” and quality of life are discussed. “But almost always these are incongruent with how people with disabilities themselves describe their quality of life in studies.”

Dr. Carnevale said the treatment teams who make life or death decisions about whether to continue or withdraw care don’t have experience with children who survive prematurity or injuries with medical complexity or disabilities. “We’re imposing highly uninformed concepts of quality of life with the illusion that they are objectively verifiable.”

Clinicians need to strive for empathic attunement, he said, which he described as “not just trying to get the emotive sense of a person, but trying to get what that person’s perspective is like. We need to find a way to foster intellectual humility on very complex concepts.”

As a reminder that medical beliefs can be based on biases, not science, he recalled that when he began nursing in the 1970s clinicians didn’t treat pain in newborns. That’s because they believed newborns didn’t feel pain. In fact, studies now show newborns may have a heightened sensitivity to pain.

Dr. Carnevale said he’s horrified to recall how he and other clinicians performed painful procedures on infants, without pain control, despite the fact that the babies grimaced.

Is it possible that we misjudge capacity, and what matters to a child, in a similar way?

How can we be so sure of a child’s inner world when they can’t express it in ways that we understand? 

Dr. Carnevale said our concept of best interest must be “maximally informed by the child’s own important information on how things affect them. I worry that we too readily dismiss the importance of taking the required time to understand, by conflating communicative difficulties with experiential compromise. It's easy and tempting for someone who is rushed to assume all words are meaningless.” 

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