Wednesday, April 27, 2016

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. 

Monday, April 25, 2016

'I love everything about him:' Filmmaker on his brother

By Louise Kinross

Owen McIntyre, 9 (right), is the winner of this year’s Filmpossible award for his film My Life With My Brother Rhys (who is pictured on the left).

Filmpossible recognizes young filmmakers who bring visibility to disability. The award was presented yesterday by Holland Bloorview in partnership with the TIFF Kids International Film Festival. This year's winner was selected by Holland Bloorview's children's advisory council. 

BLOOM spoke to Owen about why he wanted to tell the story of his brother Rhys, who has a gene mutation and related disabilities.

BLOOM: Why did you want to do a film about your brother?

Owen McIntyre: Because he’s important to me and I want people to know about his disability and I really care for him.

BLOOM: Can you tell us a bit about Rhys’ disability?

Owen McIntyre: It’s a gene mutation that doesn’t allow him to walk or talk and he has trouble chewing.

BLOOM: What do you hope other people get from watching your film?

Owen McIntyre: I want them to understand that there’s a whole world of disabilities beyond the world we often see. Sometimes people think my life is so perfect.

BLOOM: Do you mean that some people don’t realize that some kids can’t do the everyday things that most of us take for granted?

Owen McIntyre: Yes.

BLOOM: Do you ever find it hard to explain Rhys to your friends?

Owen McIntyre: No, my friends I’ve had since kindergarten and they know I have a disabled brother and they understand and treat me and Rhys like everyone else. Some people at one point didn’t understand. I was okay with that, because at one point I didn’t understand either. For a while I thought my brother was normal and I was the one who was different. The fact that my friends understand what Rhys has makes me feel really, really happy.

BLOOM: What do you love most about Rhys?

Owen McIntyre: I love everything about him. I just love him. He’s my brother.

BLOOM: Are there certain things you like doing together?

Owen McIntyre: Playing with him, talking with him, enjoying ourselves outside. Tickling him.

BLOOM: Is there anything difficult about having a brother with a disability?

Owen McIntyre: The public. Walking outside, some people will give him a normal smile, and some people will give him a smile that says ‘I feel bad for you.’

BLOOM: What have you learned from your brother?

Owen McIntyre: Rhys has made me think a lot and that’s why I think I’m so smart. If my parents didn’t have the challenges they had when Rhys was born, I’d probably be really different. I think every little thing in the world turns into one big thing. So if I put one little piece of the puzzle there, or if I don’t, there will be two different happenings. I’d probably go to a different school if Rhys wasn’t my brother.

(Owen’s mum Natalie explains: Rhys’s dad and I separated and we had to move out of Owen’s school district. But we decided that Owen would continue at his existing school because we didn’t want him to have so many changes at once: divorce, moving, changing schools and having the challenges of a challenged brother.)


Friday, April 22, 2016

'What we do goes above and beyond the medical'

By Louise Kinross

Three years ago Elyse Poulin (left) began her career as a newly minted nurse on Holland Bloorview’s complex continuing care unit. She works with children and teens with the most complex medical problems and disabilities—many of whom use ventilators or other life-saving equipment—and their families. BLOOM talked with Elyse about the challenges, frustrations and rewards of her work in children’s rehab.


BLOOM: Why did you go into nursing?


Elyse Poulin: I got into nursing because I liked that every day I was going to make a change in someone’s life—whether it was big or small. It was making a difference and having an impact.


BLOOM: You work with children who’ve experienced catastrophic trauma or been born with very complex medical and developmental problems. What are some of the challenges?


Elyse Poulin: One of the challenges is the degree of accountability, and while this is a good thing, it’s also very stressful. No matter what the situation is, you’re the one that is with the client 24/7 at bedside. If you feel a certain plan of care for a child is not appropriate you need to take the initiative to advocate on their behalf and implement the changes that are going to lead to a better outcome. Physicians here always support the nurses, but they only know what we report to them and document. You need to speak up and hold a strong voice. 

BLOOM: What is it like working with children who have the most serious medical problems and disabilities?
Elyse Poulin: Our clients have an array of circumstances. Right now we have more transitional clients and we’re seeing them go home and live with their families and resume their lives as they were before the hospital, or to the best of their abilities given their circumstances. It’s definitely difficult seeing children who have long-term disabilities and illnesses that impede their ability to rehabilitate and go home. In those cases, their norm is staying at Holland Bloorview and we become like a second family to the child and their family. Sometimes it’s difficult knowing that they’re here because there aren’t enough supports in the community. 

With some parents you develop very close relationships and you’re there with their child when they can’t be. The collaboration is nice, but it does come with an extra feeling of responsibility and accountability above and beyond what a nurse might normally experience.
BLOOM: What are other challenges?
Elyse Poulin: You have to remember that while work/life balance is difficult to maintain, if you neglect yourself then eventually that will be reflected in your work. Our clients and families rely on us to be positive for them and to be that extra little bit of encouragement that they need during stressful times. We need to be the anchor in their lives, and to do so we need to stay positive and healthy.
BLOOM: There must be difficult times because of the degree of stress that families are under?
Elyse Poulin: Sometimes families are very upset about their personal circumstances and it may show in how they communicate with us. The challenge is to respond with sincerity and I just hope that by the end of my shift I can turn their frown upside down. 

Sometimes we go through this internal struggle because we want families to remain positive, but we have to deliver news that is not positive, and the truth can hurt. In those cases, if the family reacts negatively, it is hard to not take it personally. You have to recognize that no matter what you do, sometimes their mindset is their mindset. You definitely wish you could change the outcome of everybody’s situation.

I feel like I’m a soldier of health care. It’s my duty to protect clients and keep them healthy and happy, even if that means sacrificing myself, my energy. Helping families get through difficult situations can be incredibly taxing on us, but it’s always worth it in the end. 
There’s a holistic approach to what we do here that goes above and beyond the medical aspect of things. That’s why I feel it’s one of the most rewarding fields I could be in. 
We get to see children assume some sort of normality or a new norm and overcome barriers. We see them learn a new way of living life and they teach us new and different ways of living. Seeing them get to go home with a big smile on their face and knowing you’ve been a player in their ability to continue on with their lives is rewarding.
BLOOM: If you could tell parents one thing, what would it be?
Elyse Poulin: That we’re here to be a partner in your child’s care and to work with you, not against you. We are always actively advocating and wanting the best for your children. Sometimes there are barriers within the healthcare system that tie our hands. But we are listening and we want everything you want and more.
BLOOM: What are the most important qualities a nurse in this area needs?
Elyse Poulin: Empathy, partnership. You need to be an educator, an advocate, a leader and a role model.
BLOOM: How do you manage the emotional side of this work?
Elyse Poulin: That all comes down to working with a good team and communicating with your team and managers. I feel like there’s a very strong bond on our unit. We’re always there for each other and we’re all incredibly good team players. There’s always someone to talk to and management does a great job of addressing concerns as soon as they’re brought to their attention.
I also think it’s important to get involved with different opportunities that arise off the unit so you feel your voice or concerns are heard, rather than just taking them home.
If you wish you had done something differently during your shift, you need to know there will be an opportunity in the future to change your actions based on what you’ve learned. That’s all part of being a nurse. Not everything goes smoothly, but you learn as you go.
BLOOM: Is there anything you do during the day to make sure you’re taking care of yourself emotionally?
Elyse Poulin: Make sure you take your break. You need to take that hour to laugh, rest and nourish yourself.
BLOOM: What advice would you give a nurse beginning in children’s rehab?
Elyse Poulin: It’s not all about medical, bedside, task-oriented things. It’s above and beyond that. It’s engaging in all aspects of these children’s daily routines and being part of their active rehabilitation back to what they had or to what they can attain. You have to look at the bigger picture, not just the task at hand. Always ask yourself: ‘Where did they come from and where are they going?’ Every client brings a unique story with them.
BLOOM: Have your views on disability changed since you began working here?
Elyse Poulin: I was told at a young age that I had learning disabilities. I heard the word ‘disability’ and thought that meant I had the inability to do certain things. I came from a small town and the supports were limited. But I always believed in myself and that if I wanted something badly enough, I would obtain it, and I did. When I started at Holland Bloorview I noticed that everyone here had that same mentality. It reinforced the feelings I already had about disability and reminded that where there’s a will, there’s a way.
I also learned that despite whatever illness or disability a child may have, there’s always a way to help them communicate. Some of the technological advances I’ve seen come out of here have been so cool. The more unique a child’s way of communicating, the more it draws me in. Whether it’s with their eyes, or fingers, or with technology.
BLOOM: The relationships you have with children and families here are different than in acute-care, right?
Elyse Poulin: Yes, we play a more active role with the client and the family. In acute-care it seems very in and out. Here, there’s a partnership. The relationship is longer. And it’s not just a partnership, it’s a friendship. 
BLOOM: If you could change one thing about your job, what would it be?
Elyse Poulin: The length of shifts. I do 12-hour and eight-hour shifts. I think if we only did eight-hour shifts across the board it would allow for greater continuity of care and be less taxing physically and mentally. 
In the photos above and below, Elyse is with Zoey Lamarche, 3, and her mother Amanda.


Thursday, April 21, 2016

Flight ban is discriminatory says Toronto mom





















By Louise Kinross

Yesterday, Kara Melissa Sharp and her family arrived at Toronto's Pearson airport at lunch time for a flight to Hong Kong at 3:30 p.m.

Almost 24 hours later, the family is still waiting at the airport.

Cathay Pacific won't allow them to board a plane to Hong Kong with a special car seat for their son Sebastian, who has cerebral palsy and seizures.

The Convaid seat, which Sebastian used on a WestJet flight to Florida last year, was approved by Cathay Pacific in December when Kara booked the flight.

Yesterday the airline informed the family that they don't allow car seats onboard for kids over 36 months. Sebastian is seven.

"I say disability discrimination," Kara says. "He can't travel without it."

Sebastian is unable to sit up on his own and can't eat or be fed through his stomach feeding tube without this supportive seat. The family also need the seat in order to rent a car in Australia, their ultimate destination.

At 3 in the morning, the family was denied boarding on a second flight. According to Kara, Cathay Pacific offered to have a five-point harness shipped on a flight from Hong Kong to Toronto for Sebastian.

But the family would need to wait to travel at 1:45 tomorrow morning. And Kara says the airline's harness "does not safely accommodate Sebastian's needs."


The fiasco calls to mind an incident last year when a disabled man was forced to crawl off an airplane after passengers disembarked and staff forgot to bring him a wheelchair. Ironically, the man, D'Arcee Neal, was returning from a talk he'd just given on accessible transportation for people with disabilities. In this related news item, the National Disability Rights Network says they got over 27,500 similar complaints about inaccessibility in 2014.

Kara notes that Sebastian is exhausted because he only got four hours of sleep last night. Lack of sleep is a trigger for seizures in children with epilepsy. 

According to the safety information on the seat (see below), it is certified for use in cars and aircraft when used with the harness.




































Tuesday, April 19, 2016

The interview I didn't do

By Louise Kinross

Yesterday I had a call from someone at CBC’s The Current radio show asking if I’d participate on a panel this morning.

They were interviewing author Craig Davidson about his year driving a school bus of students with disabilities—the iconic “short bus.” His memoir on the topic—Precious Cargo—came out last month and we interviewed him.

CBC wanted to know if I’d sit on a panel to discuss disability and stigma from a parent’s perspective.

After saying yes, they called to tell me they were, instead, going with Ian Brown, the Globe and Mail writer who had reviewed Precious Cargo in Saturday’s paper.

Oh. Okay.

Ian and I have presented together about writing about our children with disabilities. I adored his related memoir The Boy In The Moon.

But before I got the call from CBC, saying I was ditched, I started thinking about stigma.

The CBC guy had asked me how people reacted to my son, who has a rare genetic condition and looks different, when he was a baby, and how it affected me.

I said that as a young parent I had my radar on for how people looked at or interacted with my son.

I didn’t want people judging my baby, making assumptions about him because they recognized something different in his appearance.

That’s because while I might not have been able to articulate it well, I was familiar with the stigma attached to people with disabilities: that somehow a child was less human because they didn’t have an ability or appearance or behaviour valued by the culture at large.

We strip people with disabilities of their worth—set them apart from ourselves. Any parent will tell you that their child is their world. The last thing they want is for someone to trample on that world.

The CBC guy asked me why I thought other parents might be uncomfortable when they meet a child with a disability.

A lot of people have grown up not knowing someone with a disability, I said, so their discomfort is related to lack of exposure.

But even more than that, I think we want to pretend that our kids aren’t vulnerable, that we, as people, aren’t vulnerable. Seeing a child with a visible difference reminds people that they too are vulnerable, that we’re all fragile, mortal and less than perfect. Someone like humanitarian Jean Vanier would say that’s the beauty of humanity, it's what unites us and stirs us to feel compassion for ourselves and others.

But in the Western world, the social push to individualism and competition is stronger. We tend to believe that human worth is earned, through what we do, and we can never do enough. There isn't much talk these days about humans being inherently valuable, simply by virtue of being alive. Witness our insatiable appetite for books on productivity like the recent Smarter, Faster, Better. And that extends to the way we view our kids.

The CBC guy asked how we could change negative perceptions of disability.

I said I thought children needed to be taught the value of difference and that to be human is to be different, whether in how we move, think, look, act or communicate. We need to celebrate difference, start from the foundation of our diversity. 

Unfortunately, instead of celebration, we often see overt signs of marginalization when it comes to kids who fall outside the norm.

For example, the kids on Craig Davidson’s school bus ride a short bus rather than the regular-sized school bus. 

Just last year, administrators at a Tennessee elementary school took this 'singling out' on transportation one step further. They decided that disabled students who were mainstreamed at their school wouldn’t appear beside their classmates in the yearbook.

Instead, they photo-shopped them looking out the windows of a short bus at the back of the book. As that yearbook got closer and closer to going to print, just how many school staff reviewed that page at the back and found no fault with it? What message did all students
—disabled or otherwisereceive when they opened the yearbook?

We've seen high-profile social media campaigns by parents whose children are denied a heart or kidney transplant because they have a disability, particularly an intellectual disability. So many, in fact, that the Autistic Self Advocacy Network felt it necessary to research and publish a toolkit on transplant discrimination based on disability. Yup, many people don’t know that we routinely exclude people with disabilities from organ transplants. They're not seen as worthy of scarce resources.

It’s also common in North American health protocols to bar children and adults with intellectual and physical disabilities from admission to critical care during a pandemic.


Last year I corresponded with Dr. Dominic Wilkinson, a director of medical ethics at Oxford University and neonatologist who argues in peer-reviewed journals that it's just to ration life-saving treatment for disabled newborns. "Cognitive disability, particularly severe cognitive disability, prevents people from being able to do things, to appreciate things, to enjoy things that most people think are valuable in human life," he wrote me in an e-mail.


When I noted that people with intellectual disabilities rate their quality of life high, he wrote "happiness is important, but it is not the only important thing in life...I
 don't think that it makes sense to think of wellbeing (or quality of life) only in terms of happiness."

That seemed rather telling, and sad, to me: joy and satisfaction in life is less important in our culture than ability and achievement. 

And what about Rick Mercer's rant last month on Canada's 'war on kids with Down syndrome?' Just how would you describe to a child that a family that's lived in, and contributed to, Toronto for three years is being sent back to Costa Rica because their son has Down syndrome? How does that not devalue children with disabilities?

Yesterday on CBC's The 180 there was an interesting interview with University of Calgary professor Gregor Wolbring, an ableism and disabilities studies scholar who uses a wheelchair. "Do I suffer because I have no legs, or do I suffer because you have legs and build everything accordingly?" he asked. He was questioning why abortions based on disability don’t provoke the same outrage as abortions based on sex. Read the comments for a window into how we view disability, and how kids are socialized to see it as less than human.

There are some positive developments on the horizon.


A couple of months ago Tommy Hilfiger
launched a line of children’s clothing identical to its regular line, and at the same price point, but with adaptations for kids with disabilities built in.

Instead of tricky buttons and zip flies that are hard for kids with amputations or limited dexterity to manipulate, magnets are used. Hems and waistbands are adjustable. Certain styles fit over bulky braces or open with magnets at the back. The latter makes them easier to access for parents dressing a child with limited movement.

It’s not rocket science. Magnets aren’t new, and they’re not expensive.

But it took a mother whose 10-year-old son couldn’t wear jeans to school to start a movement that said disabled kids deserved choice in their clothes, like any other kid. Why should kids with disabilities be stuck wearing track pants?

Until Tommy Hilfiger introduced this line, no major brand had bought into the idea that kids with disabilities mattered. That they had value. For all intents and purposes, disabled kids were invisible when it came to fashion.

And that's what privilege and stigma is all about: which people are valued, and which aren't. Who is seen and heard, and who isn't. 

Here's the audio from the CBC The Current interview on disability and stigma this morning.

Monday, April 18, 2016

Mailbag: What you said about stunting a disabled child's growth

You voiced strong opinions on a BLOOM post about a New York Times Magazine story on parents who choose to medically halt the growth of their children with severe disabilities (photo above from The New York Times). 

The argument for the treatment, done through surgery and hormones, is that a child who remains tiny can be more easily cared for by parents and siblings at home, and included in activities that become impossible as they get taller, heavier and harder to lift. In addition, parents believe girls will be less likely to be sexually assaulted as adults if they don't grow breasts, and want them sterilized to avoid menstrual pain. 


In the article, an ethicist noted the treatment was only for children with "the lowest cognitive function." I thought the implication was that children with the lowest intelligence wouldn't experience the pain, in the case of a girl, of a hysterectomy and mastectomy, in the same way other children would.

You corrected me and said that pain was not the issue. Instead, the treatment is thought by some to be warranted for children with low cognitive function because altering their size won't compromise or violate their sense of identity in the way it might a child with average intelligence.

Here are a few of your edited comments:

I feel a lot of sympathy for parents who can envision a time wherein their small child grows up to a 125 or 150 or 200 lb person. I can see that they would agonize over what they see as a diminished quality of life. And to the parents who choose thistheir ability to move their child IS of paramount importance, as indicated by the article.

I think in the ideal world there would be supports in place that parents can care for full-grown adult children at home
and in publicif they so choose. But that isn't what happens. And as such, I really can't judge these parents who decide that this is best for their child. These are just parents who are trying to do the best they can.


Adrienne

As you know I dedicated a whole blog to this issue. Like others have commented here, I did not read anything about pain being the issue. The issue is cognitive ability or disability and that it cannot be assessed in individuals who do not have the physiological ability to express their mental state. 

In any case, if a woman in a coma is sexually abused by, say, a hospital worker, is it still rape? Is it still a crime? Is it okay to provide minimal care to our elder population with dementia because they don't know what's going on anyway? That's the crux of the problem; supposedly these children don't know what is being done to them, so it's okay to do it. G.A. is the most appalling violation of human rights that I have ever heard of.


King

This issue raises many concerns [and relies] on several contestable premises.

First, the use of the child`s intellectual capacity as a criterion for justifying these interventions is quite perplexing. As long as a child has consciousness, he/she should be able to experience pain. Moreover, impaired cognitive function could in fact pose greater concerns rather than less, as it may compromise the child’s ability to understand the discomforts that he/she is experiencing; that the “treatment” is supposedly beneficial for him/her. 


Second, using these medical interventions to facilitate basic physical care of the child seems like a stretch of the child’s best interests standard. This seems to impose a disproportionate burden on the childto render the child physically easier to care forwhen household adaptations and assistive devices could be used instead. 

Finally, there seems to be an under-recognized breach of basic respect for the child’s dignity, by treating his/her body in simple mechanistic terms, using convenience as a rationale for bodily alteration.


Franco A. Carnevale, RN, PhD (Psych), PhD (Phil) 
Pediatric Ethicist, Nurse, Psychologist
McGill University

Friday, April 15, 2016

'I feel like a castaway:' 10-year-old boy with autism

The National Autism Association posted this poem written by a 10-year-old boy  on its Facebook page. "He was asked to write a poem for school titled 'I Am,' his mother wrote. "He was given the first two words of each sentence. This is what he wrote."