Tuesday, October 17, 2017

Jonathan Mooney calls out our 'rhetoric of differences'

By Louise Kinross

Author Jonathan Mooney has a brilliant piece in the New York Times' disability series this week: You are special! Now stop being different (illustration by Dadu Shin).

In it, he recounts how the education system's focus on fixing, instead of embracing, his attention and learning disabilities stomped the creativity and self-worth out of him, and left him a depressed school drop-out at age 10. "I spent hours a day being fixed," he writes. "I was turned into a 'patient' who needed treatment rather than a human being with differences to be empowered."

I interviewed Jonathan in 2010 after he graduated from Brown University and published The Short Bus: A Journey Beyond Normal about his trip across the U.S. in a yellow, special-ed bus to meet kids and adults who've been told they're broken. It was one of my all-time favourite interviews.

What Jonathan finds in these folks is beauty, strength and a common humanity. "If you watch the strange, the other, the bizarre long enough, if you really see these people, you will find familiar pieces of yourself in their experience," he writes in that book. 

What he nails in his New York Times' piece is the way American culture preaches a "rhetoric of differences" and love of the individual, but as soon as a kid starts kindergarten, the message is "sit down, keep quiet and do what everyone else is doing." 

In reality, "all of us, even the so-called normal, move in and out of states of ability and disability every day," he writes. 

Jonathan notes that he still can't spell or sit still, but his success is built on "using support and technology to mitigate my weakness and build a life on my strengths."

He calls for a civil rights movement that rejects the idea that disability is the problem and calls for schools and workplaces flexible enough to include everyone. "We have to fight for every person's right to be different," he says.

I've never heard disability rights expressed that way. But it makes perfect sense. It's a rejection of sameness and convention. 

Thursday, October 12, 2017

Falling asleep on a home-care night shift spurs nurse's research

By Louise Kinross

Krista Keilty is a nurse practitioner and visiting scholar at the Bloorview Research Institute who studies parents who care for children who require a “mini-ICU” at home. These children have complex medical problems, use ventilators, and require round-the-clock observation. Krista has cared for these children and families as a nurse at SickKids—where she taught their parents the skills to transfer home—and as a home-care nurse.

In 2015, Krista published a study that found parents of kids who use ventilators at home risk their own health because they struggle to sleep—even when a nurse is in the home. More recently, she’s interviewed parents and home-care nurses to study the factors that contribute to poor parent sleep. She works at SickKids and Holland Bloorview to improve the care and training families of children with ventilators receive as they move from SickKids to Holland Bloorview, and then home.

BLOOM: How did you get into this field?

Krista Keilty: I came to pediatric nursing straight out of undergrad. It was my favourite clinical placement. At the time, I was living in Fredericton and there were very few jobs in New Brunswick. But SickKids was recruiting across the country and set up in a hotel room in Fredericton. In less than an hour, they had me sign a contract and I agreed to move from Fredericton to Toronto, to a hospital and city I had never visited.

BLOOM: Wow. What was your first job there?

Krista Keilty:
I was a staff nurse on the Ear, Nose and Throat (ENT) floor, which included a constant-care room for children with chronic complex needs—most of whom had a tracheotomy. I became very interested in being one of the primary nurses training families in preparation for their move home. We didn’t have respiratory therapists then, so nursing had a prominent role.

BLOOM: Given it was your first job out of school, were you nervous to be working with children who required such a high degree of care?

Krista Keilty: I don’t remember being nervous about caring for children with traches. I remember my eyes being wide open in a very large organization, with lots happening and so many opportunities in front of me.

I was warmly embraced by a number of really caring, longstanding ENT nurses who mentored me with a lot of enthusiasm. I learned that trache skill-set early in my career. In the day they called us ‘trache-trained,’ and we travelled around the building as needed.

BLOOM: What is your research focused on now?

Krista Keilty: Understanding the experience of families providing comprehensive medical care for their child at home has been the foundation of my career. Fast forward many years, my research focus is building a program that examines the experiences and outcomes of caregivers when children depend on technology and require constant observation. If a machine were not to function, there would be a negative outcome for the child.

BLOOM: Two years ago we did a story about your study showing parents of children who use ventilators at home are sleep-deprived, and this puts them at risk for physical and mental health problems. Did that study lead to any policy changes that enable families to get more nursing hours?

Krista Keilty: Not a lot has changed, except that everything has changed. With the community care access centres (CCAC) moving to the local health integrated networks (LHIN), there is interest in the LHIN looking at new models of integrated care and funding packages for pediatric home care. At least two LHINs, including Toronto Central, have tested self-directed funding, and the evaluations are pending. A recent Ontario announcement suggests there will be movement towards families having more say about their care, but the details are pending.

Not much has changed in access to home-care nursing. Family voices are being heard better, but change to new ways of doing things is slow. Discharges are delayed while families wait for home care to be available, and once home, the amount of care received is often inadequate.

I think that targeting improvements in [parent] sleep and respite remains a priority. We co
ntinue to build evidence to plan an intervention around the sleep disturbance we’ve documented. I’m doing a follow-up study here at Holland Bloorview where we examine the perceptions of family caregivers and home-care nurses about the factors influencing sleep disturbance.

BLOOM: What have you learned?

Krista Keilty: We heard from families about the inability to turn off the switch of worry and vigilance, even when a nurse is in the home to watch the child. Whether we call that insomnia or constant vigilance, that’s one area of work that may lend itself to behaviourally-based interventions.

Another major finding was the use of personal technology to help parents monitor their child or monitor the nurse. Families describe nurses falling asleep often.

Parents may have a baby monitor visible at their bedside with the volume turned on. Or they may ask nurses to text updates on their child throughout the night, from the child’s bedroom to their bedroom.

We know the influence of technology on sleep is a public health concern in the general population, and it’s likely a large source of interference with caregiver sleep.

BLOOM: But if a parent is afraid the nurse may fall asleep, it sounds like there are good reasons to use a monitor.

Krista Keilty: Consistency, continuity and competency in the nurses is important. Nursing agencies have a real challenge filling these shifts.

Right now, the duration of shifts is not well aligned with sleep needs. If you only have six-hour nursing shifts but you need eight hours of sleep, you’re already clipping your sleep to provide the hand over to the nurse.

Another study we’ve submitted for publication examined the use of unregulated caregivers for a longer shift—so hiring nannies, university students and others who are not classically trained for the work.

We studied 20 families who identified and trained a provider around competency and the family’s values about how they would like the care provided. They used some public and some private dollars to pay them. We wanted to know if having an unregulated caregiver who worked a longer duration of shift was an acceptable way of supporting the families.

BLOOM: How did that work out?

Krista Keilty: The families didn’t communicate any safety concerns with unregulated caregiver use. They did speak about a large burden on them to identify, hire and train these caregivers. They didn’t always feel confident that they knew how to do that, and there was no formal support system to help them.

But they also told us they appreciated having them as part of their care team. They often fit in well with the families and, once trained, offered competent and compassionate care.

BLOOM: Can you talk about what it’s like to be a home-care nurse on a night shift?

Krista Keilty: We’ve asked nurses that question in our recent study. They tell us that the nature of the work is very difficult. It can be isolating and lonely. It’s not like working in a busy hospital at night, where you have colleagues who can help you stay awake.

Not only are home-care nurses working in isolation, but one of the instructions from many families is to work in the dark, so they don’t wake the child or the family. But being in the dark is the most major cue for sleep. In a focus group, I asked how many home-care nurses had fallen asleep on the job, and there was a lot of nodding in the room.

BLOOM: Can you tell us about your own experience falling asleep on a shift?

Krista Keilty: Early in my career, when I was working as an ENT nurse at SickKids, I was also employed by a home-care nursing agency. A number of us at SickKids and Holland Bloorview were moonlighting. We did this to support the families as they started to leave the hospitals with medical technology.

One day, I got a call late in the afternoon to do a home-care shift that evening. It wasn’t uncommon to get last-minute calls. That day I hadn’t worked at SickKids, but it was my day off, and I’d been at the beach. I was sunburned and tired and in no frame of mind to be staying up all night. I declined the shift—many, many times.

They kept calling back, and I felt a lot of pressure. Finally, the actual owner of the agency called me, and she wasn’t taking no for an answer. The shift was in Oakville and I’d never travelled outside of Toronto, since I was from New Brunswick. The owner told me to get on the GO train and she’d pick me up in Oakville and drive me to the house at 11 p.m. I’d be working with a family I’d never met, with a child whose care I wasn’t familiar with, in the dark.

The child was on the main floor of a large suburban home. I met the family at the door and they briefly went over the child’s care plan and showed me the equipment. The boy was asleep, non-verbal, and on a ventilator. The parents went off to bed and I did my initial assessment of the child and provided care for a number of hours.

Sometime between the hours of 2 and 4 a.m., which tends to be the witching hour for safety incidents related to sleeping on the job, because it’s the hardest time to stay awake physiologically, I fell asleep. The father woke me up when he heard the kangaroo pump beeping, from a distance, in this large home.

I was forever changed. I realized I’d let him down and put the child at risk by not being available to the child when clearly this was an alarm to be alert to. I failed to hear it. I tried hard to have a conversation with the family the next morning about it, but they dismissed me, and I’m sure they never wanted to see me again.

BLOOM: How did this experience change you?

Krista Keilty: I had to reflect on how the provider-family relationship was structured in such a way that I was postured to be the expert, when clearly, just the fact that I had the title ‘registered nurse,’ didn’t mean I was good enough that night. I was trained on the technical side for this child’s care, but I didn’t know the family and I didn’t have a rapport with them.

I was a caring, hard-working, professional nurse, so I knew I was probably one among many who had let the family down and posed a safety risk. And, importantly—I knew I had threatened that family’s ability to get respite in the future, even when a nurse was in the home.

BLOOM: Because they would be afraid it would happen again.

Krista Keilty: Yes. This was a pivotal story in my career that spurred the idea for my PhD study.

BLOOM: What do parents say is the greatest challenge caring for their child at home?

Krista Keilty: They continue to tell us that it’s the complexity of the health system—that navigating that system takes a lot of their time and energy. In another study, I looked at the ways families spend their time. The ‘case-management’ they did for their child was a large time consumer, and it was also the most stressful part of what they did.

That’s partly why I’m excited to be here in this role. I’m working on a quality improvement project to support the families’ transition from SickKids to Holland Bloorview and then home. I’m trying to smooth those processes, and we have families engaged to tell us what it needs to look like.

BLOOM: In addition to sleep deprivation, I saw a paper you wrote that talked about how having a child with complex needs at home affects the family financially.

Krista Keilty: Yes. We’ve documented that income levels of family caregivers are less than those of a community-based sample with healthy children. Family caregivers of children with medical complexity are under-employed at a time when many would be in their highest, income-earning years.

The burden, for families, has been documented, in terms of negative impact on income, depression and anxiety, and in work by Dr. Eyal Cohen at SickKids and others, even shorter lifespans in mothers due to premature death. These data spur me, and others, on.

BLOOM: What emotions do you experience working with these families?

Krista Keilty: The gamut. I've learned that I'm highly empathic to the emotions of those in my environment. Given families can be sad and angry at times, then I find I can feel this way, too. Providers can be angry, or at least highly frustrated. But instead of feeling downcast, I most often feel happy and excited for what is possible. Families frequently experience uplifts and share their joys and hopes, which I find contagious.

They are very very thankful when their care is compassionate and supportive. Clinical and research colleagues are also energizing. I'm a big believer in the power of sleep. I need a lot of it. And it helps me get up every day with the will and ability to take on new challenges and cope with whatever comes my way. And, of course, a walk in Spiral Garden is always good for the soul.

Friday, October 6, 2017

Kids with autism spark this scientist's inventions

By Louise Kinross

Azadeh Kushki (centre) is a scientist at Holland Bloorview who analyzes patterns in children’s brain and behaviour data to guide treatments for autism. She also develops technologies that make life easier for kids with autism, like this Google Glass software that coaches kids through social interactions. Azadeh, who trained as an electrical and computer engineer, works in the hospital’s Autism Research Centre and at the Institute of Biomaterials and Biomedical Engineering at the University of Toronto.

BLOOM: How did you get into the field?

Azadeh Kushki: I did my PhD in electrical and computer engineering, unrelated to disabilities. Then I was trying to figure out what I wanted to do with my life. I had volunteered in high school as a classroom aid for other students with disabilities. I thought I might want to do something with children with disabilities, so I started volunteering at Holland Bloorview.

BLOOM: Where did you volunteer?

Azadeh Kushki: In the therapeutic playroom. We would do music with the kids or go to the Snoezelen room. The staff provide amazing guidance and mentorship, and the kids are awesome, so it was a lot of fun. I came once a week.

BLOOM: How did that lead you into research?

Azadeh Kushki: I started thinking that technology could have a lot of uses here, and people told me Tom Chau does this work. So I got in touch with him. He was supportive of my writing an application for a post-doctoral fellowship on access technologies. I got the funding and was exposed to a range of technologies. Then I met Evdokia Anagnostou, who got me into autism research. We did a joint project with Tom to understand motor function in children with autism spectrum disorder.

BLOOM: What interested you about autism?

Azadeh Kushki: There are so many differences in how autism affects [individual] children. That intrigued me as an engineer. Engineers build things to solve problems. Evdokia and Tom were the best mentors I could have, and were tremendous in helping me find my way as a scientist.

BLOOM: When did you become a staff scientist here?

Azadeh Kushki: In 2012, I applied for the Mary and James W. Davie scientist position. When you’re a post-doc, you have a lot of limitations with the grants you can apply for and the students you can supervise. Tom Chau made an argument that we needed to create these funded scientist positions, to help post-docs transition into being independent researchers.

BLOOM: So your position is donor-funded?

Azadeh Kushki: Yes, thanks to the generous donation from Jim and Mary Davie.

BLOOM: How would you describe the research you do now?

Azadeh Kushki: It’s very multidisciplinary. The unique thing about it is that I have the opportunity to combine my engineering perspective with a clinical perspective. I get to collaborate with everyone else at Holland Bloorview, so I have access to tremendous clinical [knowledge]. It's [unusual] for an engineer in my field to be so integrated into clinical practice. Most of my engineering classmates work for tech companies now.

BLOOM: How does the clinical side inform your work?

Azadeh Kushki: It’s direct contact with families, kids and clinicians who can give input on everything from what the problems are, to what impactful solutions may look like. I'm very grateful for these partnerships, and for the time families spend with us to inform our research.

BLOOM: Can you describe the two areas of your research?

Azadeh Kushki: One area is to find patterns in brain and behavioural data across children with neurodevelopmental disabilities.

Every child you meet with autism is unique, so, how do you characterize this uniqueness in a way that can inform treatment approaches? That's the question I try to answer.

The idea, based on work by Evdokia and the POND network, is that there are things shared by kids with autism, obsessive compulsive disorder and ADHD, in terms of their biology or behaviour. If we can find commonalities, these groups may benefit from similar treatment approaches.

The second part of my research involves taking these findings and translating them into technology-based interventions.

BLOOM: Can you talk about some of these technologies?

Azadeh Kushki: Sure. The anxiety meter is an app for helping children with autism recognize their anxiety. It's on its way to being commercialized.

Up to 84 per cent of children with autism experience anxiety symptoms that are impairing. The difference between kids with autism and other kids with anxiety is that many children with autism have difficulty recognizing the signs in themselves. We can teach relaxation strategies, like deep breathing, but if a child doesn’t know when they’re beginning to get anxious, they can’t apply the strategies in time.

The anxiety meter measures their heart rate and identifies when they need to start deep breathing—or doing whatever their personal calming strategy is. It’s software that can run on a tablet, a phone or a smart watch. If the child is using a smart watch, the watch vibrates to tell them when they need to start deep breathing.

BLOOM: How accurate is it?

Azadeh Kushki: In a lab setting it can detect anxiety with 95 per cent accuracy. We now have a randomized control trial going with 30 children with autism. Everyone learns deep breathing as their relaxation strategy. Then they’re put in a stressful situation—giving a speech in front of three people—and half get feedback from the anxiety meter to say they’re getting anxious, and the others don’t. Based on preliminary analysis, almost 100 per cent of the kids in the group using the meter start deep breathing.

BLOOM: And in the group that have to identify the stress on their own?

Azadeh Kushki: Around 30 per cent.

BLOOM: When will it be available?

Azadeh Kushki:
With appropriate funding, in about six months. The cost of the software download is minimal. We’ll also offer value-added services, like a cloud-based system to track your progress over time.

BLOOM: What is the software you developed for Google Glass?

Azadeh Kushki:
It’s called Holli. We wanted a technology-based coach for children with autism that goes with them to help with social interactions.  Google Glass has speech recognition and it can listen to a conversation, then prompt the child with appropriate responses.

In our study, we tested how Holli would work in a restaurant where a child would order fast food. For example, the child would go to the counter and the staff person says 
Hi, how are you? The child looks at the little TV mounted on the top of one of the glass lenses, and sees options like ‘I’m good,’ ‘I’m well,’ ‘Thanks.’ They say the words they choose. Then the software waits for the next part of the conversation, which is usually What would you like to order? And they see options like hamburger, cheeseburger, fries.

We did a usability study and all of the kids enjoyed using it and were able to complete the conversation. We’re looking for more funding to move that forward—which is the case for most of our work.

BLOOM: What do you love about what you do?

Azadeh Kushki:
Everything. I love the fact that I have the opportunity to make an impact. Part of that opportunity is interacting closely with families and kids to hear what they say is needed. The solution is usually not the hard part. The tough part is identifying the need.

BLOOM: What have you learned from families?

Azadeh Kushki: That a diagnosis doesn’t define a person. Every child has his or her own strengths, likes and dislikes, and is unique. The uniqueness of every child is the thing that I appreciate now.

BLOOM: What’s the greatest challenge of your work?

Azadeh Kushki:
Waiting to get these products out to families. It takes time to get from research and development into the users’ hands, and that’s the frustrating part. It comes down to time, money and resources.

BLOOM: What’s the work culture like here?

Azadeh Kushki: It’s amazing. Everybody is so passionate and committed to improving the quality of life for, and care of, children with disabilities.

BLOOM: What emotions come with the job?

Azadeh Kushki: There’s a sense of privilege to have the opportunity to be able to make an impact. I’m very thankful for that. I’m so humbled by the kids and families I [work] with. There’s also the frustration that I mentioned.

BLOOM: How do you cope with that frustration?

Azadeh Kushki:
I haven’t figured it out, to be honest with you. I don’t knit, like Melanie Penner does. The best I can do is to write grant applications.

The frustration motivates me to write a grant for the fifth or sixth time, after the first versions have been rejected. If I know there are people who can use it, and there’s a need, it gives me the drive to keep going.

BLOOM: What are your hopes for the future?

Azadeh Kushki: I think technology has a lot of potential to help the field of childhood disability and transform the way we think about delivering services.

Kids spend so much time with technology these days—for better or worse—so how can we use that time and turn it into productive time? The key is to make technologies that are so interesting and motivating that a child uses them. If it’s boring or cumbersome, they won’t. That’s why we spend so much time consulting with kids and families.

Thursday, October 5, 2017

Media roundup

By Louise Kinross

Goodness, we haven't done this for a long time. Below are some recent stories related to disability, parenting and health.

But first, many of you follow Meriah at With A Little Moxie. Meriah writes about parenting three kids, including one with Down syndrome, from her perspective as a mom who is deaf and lives with her family off the grid. Two days ago, Meriah posted this story called Divorce. Usually I can tell what a piece is about from the headline. But in this case, I was flummoxed. Over the years, Meriah had always included her husband, who appeared an involved partner and dad, in her writing and photos.

In Divorce, Meriah shares the story that was going on behind her posts. It was an important reminder to me of how off-base we can be about what's really happening in people's lives when we follow them on social media. It made me think about the ways I "curate" my own content.

And it made me think about how often, instead of connecting people in a real way, social media presents a sliver of the life we believe others "want" to see. We know our own posts aren't a balanced picture, but we tend to assume that others' are. And that can make us envious, less likely to connect, and more likely to keep churning out our own versions of fantasy land.

If we missed a good story below, please post the link in the comments! Louise

Virtual tour: Daniels' Accessibility Program Daniels Home is making accessible units in its condos that include a roll-in shower and balcony, hand-held shower faucet, power-operated door rough-in, wider doors, and additional wheeling room in the bathroom. These features are standard and at no extra cost. Residents pay for adapted kitchen features. These units look gorgeous! Bravo to Daniels!

Finding myself on the page The New York Times

Disabled people have to apply for 60% more jobs than non-disabled people before finding one The Independent

Will he be the driven one, or the driver? Love That Max

Raising a child with disabilities has taught me true kindness Good Housekeeping interview with Anu Nadella, wife of Microsoft CEO Satya Nadella, whose book Hit Refresh includes the story of raising his son with severe cerebral palsy.

Reflections on what I don't have to think about anymore Jennifer Johannesen

Playing the online dating game in a wheelchair The New York Times

Ontario boosting nursing, personal support in major expansion of home care Ontario newsroom

'I don't think employers see what disabled people can do' The Guardian

A hospital bullies a physician and threatens termination because of her disability KevinMD

For children with severe anxiety, drugs and therapy work best NPR

Toronto hospital aims to reduce stigma of youth with disabilities Global News (our Dear Everybody campaign)

Guelph man turns house into group home for his son Guelph Mercury

Suicidal tendencies hard to spot in some people with autism Spectrum

Ad leaders start push to employ people with disabilities AdAge

'I don't need to walk to live' The New York Times

Arresting disabled bodies New Republic

The catastrophic diagnosis: A photo essay Family Voices of CA

'Autism hour' helps cut shopping stress BBC News

'So B. It' has pluck, charm and a muddy message about disability The New York Times

Get ready for World CP Day tomorrow

Wednesday, October 4, 2017

Today we met a real, live tooth fairy

By Louise Kinross

I wanted to share a quick personal story.

My son was seen in dentistry for years at Holland Bloorview and SickKids. He has some problems with his teeth related to his syndrome and has had work done in the office and under general anesthetic. We always had good experiences. 

Then we were transitioned to an adult clinic and every visit became torture.

My son has an unusually small mouth. He can't open it wide and it's difficult to get under his lips to clean his teeth. His teeth are also highly sensitive.

My husband came back from a couple of visits to the adult clinic shell shocked. There was nothing to distract my son during a cleaning. My husband was asked to physically hold my son's arms down while the dentist cleaned his teeth. My son would comply for a few minutes, then begin resisting. My son always left these visits complaining of mouth pain, no doubt because a sharp instrument had struck his gums at some point during these tousles.

I finally attended a visit, and I left shaking. The approach seemed to be that my son's teeth would be cleaned, no matter how upset he was. The more upset my son was, the more forcefully we needed to restrain him. I asked if he could be sedated, but the dentist said he didn't believe in that. The dentist was a very kind person, but this approach didn't work for us.

Recently I reached out to the head of Holland Bloorview's dentistry to ask if he could recommend someone else. He suggested a pediatric dentist he'd trained. She sees many children with disabilities.

I called and explained how challenging it was to have my son's teeth cleaned. The receptionist told me the dentist would look at his teeth, but if he was anxious, they would gradually expose him, over multiple visits, to different steps of the cleaning.  

Today was his first visit. A dental hygienist called my son in. He got in her chair and she reclined it so he could watch a show on the TV mounted on the ceiling.

She began slowly, just looking at his teeth with her mirror. Then, for 45 minutes, she scraped, flossed, polished with one of those ticklish electric brushes, and then painted fluoride on. A couple of times my son asked if she could stop. She did. But then we'd convince him to keep going. He wasn't happy, but he could handle it. He even enjoyed wearing the sunglasses. At no time was my son restrained.

After that, my son let the dentist come in and examine his teeth. The people were so gentle, so patient, so calm. They were respectful, and had strategies that didn't involve physically holding a patient down.

I was so grateful, knowing that this would be how my son's teeth would be cared for in future. My son left the appointment happy.

Monday, October 2, 2017

Lisa Boivin paints stories about medical ethics beyond words

By Louise Kinross

Lisa Boivin is a member of the Deninu K'ue First Nation in the Northwest Territories. She paints image-based stories that explore the gap between medical and land-based, Dene ethics. She is a bioethics specialist and graduate student at the Rehabilitation Sciences Institute at U of T's Faculty of Medicine.

“Academics often want you to give an absolute, sweeping bioethical answer that fits into all circumstances, but there are certain land-based ethics that can’t be held in academic language,” she says. “So I translate them through painting. I situate my Dene experience and perspective in the paintings, and then I extract the story.”

Lisa is presenting the Town Hall session at the 12th Annual Bloorview Research Institute Symposium on Nov. 21. Her image above is called Holding Thunderbird.

BLOOM: Why did you study bioethics as an undergrad?

Lisa Boivin:
I fell in love with the element of story—that ethics are held in the story of clinical narratives. As a bioethics student, we have all of this academic rhetoric around ethics. But I learned that the ethics are anchored in the story of the patient.

BLOOM: You mean that the most important ethics are found in a patient perspective?

Lisa Boivin:
Yes. Clinical and personal hardship helped me to see ethics differently—things like informed consent. I had to read a lot of patient narratives to have a fundamental understanding of the sacred ceremony of informed consent.

BLOOM: What is the sacred ceremony of informed consent?

Lisa Boivin:
It’s both parties coming together with complete understanding of one another’s situation, and a balance in decision-making. That’s something that’s hard to accomplish, for basic reasons. The patient isn’t a clinician, and doesn’t have the expertise that a doctor has in terms of the biology of what’s happening. But there’s also such a tremendous power imbalance between the two parties.

BLOOM: Can you describe your art?

Lisa Boivin:
I came to know image-based storytelling through an inability to articulate academic thought from an Indigenous perspective. I’m not a classically-trained artist. I’ve only painted for three years. I’m a ‘60's scoop survivor from two generations of residential school survivors.

One of my professors asked me to write a paper on colonialism. I couldn’t do it. So I painted it. The paintings are born out of necessity, and are a way to communicate Indigenous perspectives to non-Indigenous colleagues. The one featured on the BRI symposium program is called Holding Thunderbird (see image above).

BLOOM: Can you describe what it means?

Lisa Boivin:
From my teachings, Thunderbird is a very powerful being, the carrier of knowledge and the conduit between the creator and the people. Thunderbird is also the carrier of justice. With that responsibility comes great frustration.

I don't feel knowledgeable, I simply carry a knowledge that is unfolding in images I'm creating. I find myself frustrated often. Holding Thunderbird relates to me as a person who struggles in the academy.

BLOOM: In the academic world?

Lisa Boivin:
Yes. The Thunderbird is me, and the woman holding Thunderbird is a professor. In the academy, I’m constantly expected to fit my Dene knowledge into a colonial format. That’s extremely oppressive and harmful to me.

BLOOM: Can you give an example?

Lisa Boivin:
There are times when bioscience research clashes with Indigenous research methodologies.

BLOOM: And bioscience is always seen as supreme?

Lisa Boivin:

This painting was created to thank a professor who was helpful to me at a residency. The woman holding Thunderbird is the professor and all the flowers represent her knowledge. She’s keeping Thunderbird from flying away, and comforting Thunderbird.

She’s the first person that’s never asked me to change or do anything that would be harmful to the Indigenous knowledge in the images. That residency provided me with a healing, and a security I had never known.

For me, the painting represents the notion that we all have our own knowledge and our own knowledge systems. And for us to grow, we need support from people who have power in our lives. It can be a professor, a clinician, or a leader in our community. But the idea is someone holding space for us, as we are.

For this professor, I didn’t have to change or fit my knowledge into a colonial format. All I was expected to do was share my arts-based knowledge. I wasn’t sure if I was going to return to my academic program. And this was the reassurance I needed that I am knowledgeable, and that my knowledge has value.

BLOOM: This reminds me of how difficult it can be to talk about disability in a culture that doesn’t value it. It’s almost like I don’t have the words, sometimes, or I feel like I’m put on the defensive, in trying to convince people that there is value in a different way of living.

Lisa Boivin:
This is the kind of damage that the medical model does to people with differences. What I’ve learned from my family is that an Indigenous perspective of wellness is much larger than the narrow perspective of the medical model. The medical model measures wellness as the absence of disease. From my Dene perspective, the measure of wellness is the ability to interact with the land.

My father had polio as an infant, and during his childhood he was seen as someone who was disabled. But when my father came home from residential school, he got on a dog sled. He became a champion dog racer and was no longer disabled. He didn’t consider himself disabled in any way. He just navigated the world differently.

I’m someone who has been diagnosed with a learning difference or cognitive disability. I have a different way of translating knowledge. I’m an image-based storyteller. There’s a reason I can’t interact with certain academic theories. The images came to life and were born out of necessity. If I could translate knowledge in an academic way, I would never have learned how to paint.

BLOOM: You said you only began painting three years ago?

Lisa Boivin:
I had some artistic abilities as a child, but I stopped because I was bullied so much. I shrunk, and the art was gone.

I feel the beauty that is translated through my images comes from another place. It’s the ancestors coming through me. When I’m doing land-based activities, like anchoring bioethical theory or conceptions of wellness or rehabilitation in my painting, I’m no longer disabled. My mind is clear.

BLOOM: You spoke about your dad’s physical disability, and how through dog sledding, he was able. How do Indigenous people view intellectual disability or other types of disability?

Lisa Boivin: There are different Indigenous perspectives on disability and wellness. You’d have to take the time to research those. There is Navaho literature on autism and other intellectual disabilities.

Of course, any Indigenous person would want someone else to embrace a notion of wellness that will benefit them and their family.

Nothing would make me happier than if someone threw away the medical model that’s measuring who they are as a person.

Any Indigenous person would want people to embrace who they are, or to create their own idea of wellness. We have to snatch as much happiness as we can. My dad walked with a limp and had varying degrees of mobility, but that never affected his understanding of his wellness.

My wellness comes from an ability to interact with the land—to understand where I am in the world, and how I fit in and what my duties are. My duty is to be an image-based storyteller.

In the Navaho literature, they don’t present an idea of correcting behaviour. You are who you are, and you contribute where you can.

You move differently, you speak differently. The eight-year-old boy in me says: ‘You have a difference, you do different stuff.’

BLOOM: I love that. There’s no judgment in it.

Lisa Boivin: It really is that simple. Having a learning disability, my conception of disability in the past was that I was academically inferior. I had an inability to perform as well as other students.

An understanding of ‘doing different stuff’ has really helped me. In my graduate studies, I have come to know that my GPA is not an accurate measure of my knowledge. I don’t have great grades and my ideas are resisted constantly by my peers and many of my professors. But people seek me out to speak at their conferences and events.

In November, I'm keynoting The Ontario Psychiatric Outreach Program's conference and Woodsworth College's annual accessibility conference. I also did a centre talk and taught two arts-based workshops at St. Michael’s Hospital in the summer. That professional affirmation keeps me from giving in to the notion that I’m academically inferior to members of my cohort.

BLOOM: We did a narrative group for our inpatient nurses, and in addition to writing about their emotional experiences caring for children and families, they drew comics to help them see from different perspectives.

Lisa Boivin:
In my arts-based workshop, I ask clinicians to create a visual narrative of themselves. Drawing yourself really expands the idea of practice. I ask them to draw who they are as an individual, how that influences their practice, what they want to contribute to their working community, and what they want to give to their patients. That’s a pretty big task to do in an hour! But it teaches people to be more reflective.

There’s something about drawing a piece of yourself where you have to capture a piece of your humanity. Within that humanity is vulnerability, but also an understanding of your responsibility as a clinician.

For me, I have my own image, and sometimes I have to go back to that image to remind myself to be better at what I do.

Being the frustrated Thunderbird that I am, there's a hawk feather in my self-portrait to remind me to speak gently and clearly. I also have a clipboard which represents consent. I’m always trying to build a place where clinicians can understand what consent it.

BLOOM: What do you hope to do in the future?

Lisa Boivin: I want to share information about Canada’s colonial history and how that creates clinical barriers between a clinician or therapist and a patient.

There are centuries of failed relationships between what would become Canadian institutions and Indigenous people. For hundreds of years, there’s broken promises, institutional racism and mistrust. And this still takes place in medicine today. I am horrified when I read stories in the media about Indigenous patients who die in ERs because they're seen as drunk or drug-seeking. When an Indigenous patient sees that in a media story, it influences how they interact with a doctor.

Medicine has also been used as an instrument to remove Indigenous children from their homes, because it's perceived that Indigenous parents can't look after their children. This was certainly the case for my father, who had over a dozen surgeries to correct his mobility impairment.

I’d like to promote an understanding of a wider notion of wellness. As we spoke of earlier, the medical model is very simplistic. It’s the presence or absence of disease. There are wider models of wellness.

For many Indigenous people, the ability to interact with the land is a measure of wellness. An Indigenous worldview includes the land, animals, community and nature. An ability to contribute to community is central to wellness, and that can be any contribution.

I’m a health-care educator and I will continue using arts-based practice to educate about colonialism and how that exists in medicine.

BLOOM: I think your ideas could be helpful to any patient, including non-Indigenous patients

Lisa Boivin: Imposing a medical model—one standard or one measurement—on any group of people is really harmful.

For my first two years as an undergraduate student, I struggled. It wasn’t until I was able to understand certain concepts and put them into images that I was able to thrive.

Learn more about Lisa’s experience and insights in her Ted Talk: Painting the Path of Indigenous Resilience. In this video, she describes the image Sharing Bioethics below as the overlap between a traditional Dene circle of medicine and an academic circle of medicine. "We all hold circles of medicine," she says. The photo below is by Erin Howe at the University of Toronto.

Monday, September 25, 2017

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 childrentheir views on what it right and wrong, good and bad, and just and unjustparticularly in the context of childhood disability.