Tuesday, December 6, 2016

The up and down reactions to one dad's parenting world

By Ron Bishop

Our son Neil is 14. He was diagnosed at a week old with cystic fibrosis. When he couldn’t hold up his head or sit at age one he was diagnosed with cerebral palsy and developmental delays. He didn’t walk on his own till he was 11—that was an amazing day.

It’s fair to say that Neil’s three favourite places are: a swimming pool, where he can engage in Olympic-calibre, slap-splashing; a set of stairs—any set of stairs, any size, any height, carpeted or not, anywhere, including those in buildings at Drexel University in Philadelphia, where I’m on the faculty—and the escalators at a local bookstore.

From the start of Neil’s fascination with the bookstore escalators, the staff has been kind and accommodating. My wife Sheila and I know many by name. Some days it’s almost like a scene from the classic television show Cheers, when Norm Petersen trundled in to the fictional Boston bar to enthusiastic shouts of “Norm!” Other kids have been castigated for their rambunctious escalator behaviour, but Neil rolls merrily on, up and down, laughing.

Once, when one of the escalators was shut down for repairs, a genuine look of sadness crossed the face of Tom, who like many of his colleagues has come to know what these visits mean to Neil. We improvised, of course; the malfunctioning escalator became a set of stairs. We cruised up and stepped down.

But while the store’s employees have been kind—so much so that Sheila and I sent a letter thanking them to the corporate office—it’s the range of public reactions to Neil, and his intellectual disability, that coalesced into the leaping-off point for my next book.

With apologies to the very talented people who created the hit movie Inside Out, when we go out with Neil the looks we get typically reflect:

Disgust, as if the person is thinking—but will never muster the guts to say—“how could these people bring him here?” Some sneer visibly at Neil. Some change direction to avoid any contact with him. Some act as though they might catch his challenges. Others grumble when he cuts, with no malicious intent, in front of them to get on the escalator.

Indifference is the look we most frequently experience, as if Neil isn’t even there. Maybe intentional indifference is more accurate; these folks see him, they just don’t “see” him. To be fair, it may be that they’re wrapped up in what’s taking place in their own lives—getting a book for school, for example, or trying to quiet a grouchy child.

Curiosity It’s as though they’ve come upon an animal seen only in the wild or are gawking at a museum exhibit. Kids most often display this look, although to be fair, it probably originates in a lack of exposure to folks like Neil. It’s actually a mix of wonder and…

Fear—Neil doesn’t notice it, thankfully. But Sheila and I have been brought to tears more than once by kids who cringe when they see him, as though they’ve seen a monster, and duck behind a nearby parent.

Happiness It’s heartwarming when folks express gratitude to Neil for purportedly keeping the escalator moving. “Are you helping us get to the top?” they’ll ask. “Thanks a lot buddy,” we hear now and then. Others just smile at him: some out of a sense of obligation, others to check off “was nice to a disabled person,” and still others just because they recognize that he’s a very compelling individual.

A couple of weeks before Christmas last year, a middle-aged couple who watched Neil for about an hour from a table in the cafĂ© stopped us between descent and ascent and handed us a $25 gift card. They told us he was a beautiful young man—quite true—and asked that we use the card to buy him a present.

Finally, we have Emulation. Neil has inspired a small but dedicated legion of imitators, kids who watch the escalator, grasp and pretend to propel the handrails, and now and then follow us on our forays.

During a visit this past October, two young girls, probably 12 or 13, hitched about a 10-minute ride one step behind us. Others dip into the escalator shenanigans songbook, sitting on the steps, running up and down, and attempting the time-honoured “go down the up” and its just-as-exciting cousin, “go up the down.” Sheila and I cringe with fear and a little embarrassment when a kid gets in trouble with a parent or a staff member for wanting to hang out and ride.

I’d guess that for all of these folks—the nasty, the encouraging, even the kind—Neil’s presence at the foot of the escalator is unusual and unexpected. We’ve learned that families like ours, with a child with an intellectual disability, are often reluctant to go out in public.

My new book will dissect how the news media portray people with intellectual disabilities—as hopeless victims or spunky competitors who sink a basket after sitting on the bench all season. Rarely do we see people with intellectual disabilities celebrated for who they are as individuals.

A huge part of the book will be stories from families with experiences like ours. I’ve put together an open-ended survey to collect stories from parents about how their child is treated by the general public and family, and how this influences their lives. If you’re the parent of a child with an intellectual disability, please consider filling out this anonymous survey. Thank you in advance for your help!

Ron Bishop is a professor in the Department of Communication at Drexel University in Philadelphia. To speak with him about his upcoming book Holding Up The Sky Together, e-mail Ron at rcbsam@comcast.net.

Monday, December 5, 2016

Early autism therapy saves taxpayers money, study finds

By Louise Kinross

Intensive behavioural therapy for autism is expensive—over $100,000 per child. In Ontario, the average child waits two-and-a-half years to get it.

Now a new study in the journal JAMA Pediatrics puts the cost of that treatment delay at an additional $267,000 per child over a life time.

That’s because later therapy is less effective, resulting in less independence in adults and the need for more lifelong support, says lead investigator Dr. Melanie Penner, a developmental pediatrician at Holland Bloorview.

Using 2012 Ontario data, the researchers did a cost-effectiveness analysis—the first of its kind looking at autism and wait times in Canada. “We built a mathematical model to look at the probability that kids had of receiving intervention at different ages and paired that with outcomes data from the Ontario program,” says Dr. Penner. “We then linked expected gains in early intensive intervention with projections for future independence, which meant you could live independently and work in paid employment.”

Eliminating the Ontario wait, so that the average child with severe autism got therapy at 2.7 years instead of at 5.24 years, would save the government almost $53,000 a child over a lifetime, the study shows. It would save society $267,000—with family caregiver time for adult children being the biggest cost. “That gap shows the additional burden families take on when we don’t have timely access to programs,” Dr. Penner says.

The study used findings from a 2011 Ontario outcome study that showed that children who received therapy before age four gained an average of 20 IQ points compared to those who received it after. “We don’t expect programs to work for everyone, and IQ is not a perfect predictor of independence, but it is one predictor in studies looking at adult outcomes,” Dr. Penner says. She said future research needs to identify other variables.

Dr. Penner, who has a Masters in Health Services Research, says her clinical work prompted the study. “I was seeing families in my clinic six months after the diagnosis and the main issue that kept coming up was wait times, wait times, wait times. I wanted to get an idea of the impact of those wait times on the investment [taxpayers] are making. The main findings show that investing in earlier access to intervention is a good investment for governments and society: when people with autism do better and families do better, we all do better.”

Wednesday, November 30, 2016

Disabled teens crave risk, speed, freedom: Study

By Louise Kinross

Many teens love to defy authority, speed and do other dangerous things.

A new Holland Bloorview study finds that youth with the most complex disabilities are no different.

The study—published in the Sociology of Health & Illness this month—found that youth with multiple disabilities want to experience freedom, speed, risk and time alone.

For example, one young man said the safety belt on his wheelchair didn’t fit with his spontaneous personality. “My whole life, I’ve been wearing this thing,” he told researchers. “I’m the kind of person that would take risks. I don’t want to just live my life as a boring person—seeing everyone do awesome stuff and me doing nothing.” His idea of fun was being pulled in the trailer of an ATV “because they were letting me go free.”

These activities are “not necessarily what we would prioritize in rehabilitation,” says lead scientist Barbara Gibson, who is a physiotherapist.

The study looked at how settings shape what we do—with the understanding that spaces aren’t static, empty containers, but fluid arrangements of people, furniture, technologies and social expectations that can enable or restrict what happens in them.

Participants included two groups rarely studied: those who require 24-7 medical care and may use ventilators and those who have little to no speech.

Youth were observed doing two activities they chose in the home or community. During the first activity they were taught to use a camera to photograph their experiences. In the second activity, a research assistant observed and discussed the activity with them as it was videotaped it. Participants also participated in face-to-face and electronic interviews. Nineteen young people aged 14 to 23 took part.

All participants said doing practical or fun things outside their home was much more challenging than inside—because people outside the family didn’t know how to help with medical or personal needs or weren’t willing to slow down to communicate with them. Activities at home were easier and more enjoyable because of connections with family members who got into a rhythm of facilitating them.

The wheelchair was seen as something freeing—for example, allowing a participant to go to the park alone—but also constricting, because of how the safety strap suggested the user was at risk or somehow lacking.

Because many activities for the youth relied on constant support from a parent, breaks from this connection—for example, when a personal support worker, friend or family member came by to visit or go out with the participant—was interpreted as freeing.

Rather than valuing independence over interdependence, the researchers suggest rehab clinicians look at how human connections in specific spaces enable positive activities and experiences. “…At times facilitating a dependency may be a more fruitful rehab goal than enabling independence,” they write.

For example, they note that while using a voice device will give a young person a higher rehab score in “independent communication,” many participants communicate much more efficiently and less laboriously through a parent or family member.

Tuesday, November 29, 2016

'A Matter of Dignity' wins 2016 disability reporting award

A Minneapolis Star Tribune investigation into how hundreds of adults with developmental disabilities are segregated and neglected in a Minnesota system of sheltered workshops has won first prize in the 2016 Katherine Schneider Journalism Award for Excellence on Reporting on Disability.

A Matter of Dignity tells the story of adults who spend their days collecting trash for $2 an hour and who have been sent against their will to live in remote, dangerous group homes that are described as prison-like.

Reporter Chris Serres accepted the award of $5,000 at the Cronkite School last night.

One of the judges, Jennifer Longdon, said the series was chosen for "its exhaustive chronicling of the experience of adults with disabilities in Minnesota, from the indignities of sheltered workshops to the hopeless years-long wait for vital services that never arrive. These memorable stories were masterfully told while preserving the dignity of the individuals profiled."

The Schneider Award is the only journalism awards competition devoted exclusively to disability reporting. It's administered at the National Center on Disability and Journalism at Arizona State University's Walter Cronkite School of Journalism and Mass Communication.

Friday, November 25, 2016

A big idea: Mobility for all

By Louise Kinross

It’s a tough business problem: how do you commercialize a medical product for a niche market that can’t afford it?

For 10 years, Holland Bloorview scientist Jan Andrysek envisioned millions of amputees in the poorest parts of the world regaining their mobility and livelihood with the all-terrain prosthetic knee he invented and developed.

But it wasn’t until American social entrepreneur David Green got involved in 2013 that he found a way forward.

This year Jan and David—along with Emily Lutyens and Brandon Burke—founded LegWorks, a socially-minded business that aims to make high quality prostheses available to amputees worldwide regardless of their ability to pay.

The all-terrain knee is its first product. The knee is sold at market rates in 10 high-income countries so that it can be sold at, or near, cost to non-government organizations, hospitals and rehab clinics in 10 low-income countries. They then provide it at low or no cost to consumers.

“We’ve developed a product for people in the developing world that is also innovative and useful in developed countries,” Jan explains.

The all-terrain knee uses a proprietary locking mechanism that locks the knee when the user extends his leg, preventing falls that occur with traditional knees that require people to place weight on the foot before stabilizing. “Amputees are prone to falling,” says Jan. This is because traditional knee joints lock when the user puts weight on them. “But if they don’t place weight correctly, which happens, the joint may not lock, causing the user to stumble or fall.”

The all-terrain knee is a rugged, high-performance waterproof knee.

About three million people worldwide have above-knee amputations. Most live in the developing world, where less than 15 per cent have a prosthetic. “That means they can’t function,” Jan says. “Most jobs there require manual labour, so they’re unable to work and support themselves or their families.”

Jan published a study this summer of 10 young adults in Chile who wore the all-terrain knee for two years and compared it to their old prosthesis.

Based on walking tests, heart-rate monitoring and questionnaires, Jan’s knee showed a number of advantages. Study participants found the knee improved their stability while standing and walking and made it easier to get around: when wearing the new knee, they expended 40 per cent less energy than they did with the traditional prosthesis. The new knee also supported natural movement in the pelvis, whereas the weight-activated knee caused a pelvic tilt that could create long-term musculoskeletal problems, Jan says.

Nine out of 10 study participants chose to continue using the all-terrain knee following the study.

“In places such as Cambodia, we aim to provide the knee at, or near, cost to non-government organizations who will provide it to low-income individuals,” Jan says. “In developed countries, we provide the knee at prices that coincide with local reimbursement systems.”

The all-terrain knee is sold in Zambia, Colombia, Haiti, Guatemala, Turkey, India and Cambodia. It’s also available in North America, Australia, Europe and Russia. Almost 500 knees have been sold.

Jan notes that while bionic devices based on microprocessors cost over $150,000 in the Western world, most amputees in poor regions can’t afford “the most basic device that doesn’t work well. There is such an inequality.”

Jan says NGOs love the knee because “the technology works well and patients want to keep using it.” One of the challenges in getting the knee to people in the developing world is a lack of prosthetists who are trained to fit them.

Three years ago LegWorks “lucked out with seed funding of $100,000 from Grand Challenges Canada,” Jan says. “To get the funding we had to present how we would translate the technology. Grand Challenges put me in contact with the social entrepreneur David Green.”

Jan learned about David’s model of compassionate capitalism. David helped create a company in India that manufactures artificial lenses used in cataract surgery at a selling price of $4 a pair as opposed to $150 in the U.S. This enables a local hospital to perform over 300,000 free or low-cost cataract surgeries each year.

Jan says he’s excited about advancing science to meet the needs of amputees. “In developing countries people with disabilities are looked down on and excluded,” Jan says. “This leads to even greater poverty. Providing them with a well-working leg gives them the opportunity to regain their lives.”

Photo above by Patrick Brown © 2014 Panos

Tuesday, November 22, 2016

Research day challenges dominant ideas about human value

How ironic that on the day Holland Bloorview research head Tom Chau encouraged us to "push against typifying perspectives" in our work, CBC's The Current was interviewing bioethicist Peter Singer on his view that parents should not be "stuck with having to look after a severely disabled child."

You can watch our Bloorview Research Symposium live-streamed here, and it is well worth a watch. Louise

Monday, November 21, 2016

Some thoughts on acceptance

By Louise Kinross

One of our staff is doing a workshop for parents on acceptance. She asked me for resources and I recommended these BLOOM pieces below. But first, a story from Adrian Anantawan, an internationally recognized violinist and former client at Holland Bloorview. 

In university, Adrian chose to stop wearing the prosthesis he'd worn all his life (he was born missing one hand). He said the prosthesis was hot and heavy and didn't make it easier for him to do things. "The function was more of an image issue than anything else, and it lost its function as I became more accepting of my own body, and how I looked to everyone else," he told me.

1. 'Normal:' It's not all it's cracked up to be An interview with Dr. BJ Miller, a palliative care doctor who became a triple amputee after an accident when he was a student at Princeton. 

"I wouldn't try to convince parents not to worry, or not to wish that their child had an easier go of things, but I would say over time spend your energy on finding things to celebrate in your child's differences. Turn your attention towards the differences, instead of away from them, and who knows what will come, either lessons or some weird new talent. Divorce yourself from the typical measures of success in life. It's a harder road, but a way more fulfilling one.

"I have a window into the inverse of this in my work. I see people all the time who do have a ridiculous wealth of conventional success and there's a lot of misery in there because they've never embraced their own internal metric, they've never done their own homework. Part of getting there involves letting go of the idea that 'if I just had this or that' or 'if I just looked like this or that' things would be perfect. In fact, it's my experience that it's the opposite."

2. Jean Vanier on accepting who we are An interview with philosopher and humanist Jean Vanier, founder of L'Arche.

"The danger in our society is to pretend that we're strong and powerful. We can do things, but we are all human beings. We were born in weakness and we will die in weakness. We were born to grow strong but also to grow weak. Discovering our weaknesses is about discovering who we are. The fundamental thing for human beings is to accept ourselves as we are, with our strengths and also with our weaknesses. And weakness is not something bad. It implies: 'I need your help.' That brings us together, because I'm not able to do everything myself. I'm calling out: 'Can you help me?' Fundamentally, we human beings, what we need most deeply is to know that we are loved and accepted."

3. Worried your not a good-enough parent? Barb can help Interview with Barbara Fishbein, a social worker at Holland Bloorview for over 30 years.

"We’re having a lot of conversations with parents about the importance of play
and leading a normal life. I think parents need to be cognizant of over-programming, over-medicalizing and over-therapizing. They need to look at the amount of time their child is spending in therapy. If your child was a typical child, would you want them spending that much time in a rehab centre or hospital? 

"Can you let go of some of that pressure on your child and yourself and be able to be with your child and appreciate them for who they are? 

"I also strongly belief in the emotional life of a child and when we focus so much on physical rehab, which of course is important, we may forget to pay attention to the child’s emotional wellbeing—including how to nurture a feeling of acceptance and belonging."

4. One humanity, one voice A story about a talk by Far From The Tree author Andrew Solomon at the Toronto Reference Library. 

Solomon [refers] to the way minority groups have historically split off from each other in their advocacy efforts. People with physical disabilities don't want to be identified with those with intellectual disabilities, or people with mental illness object to being compared to those with autism, or someone who's transgender doesn't see any common experience with a person with dwarfism. As he notes in his book, the parents of child prodigies didn't want to be included in a book with families of severely-disabled children, people with autism insisted that those with Down syndrome had lower intelligence than them, and deaf people didn't want to be associated with people with schizophrenia.

I think Solomon has nailed the problem of discrimination within the disability community—and how it fractures all of our attempts to achieve equality as humans. 

"Being blind and being gay are different, but having a selfhood that others perceive as undesirable is identical," Solomon writes in Far From The Tree.

5. There's a lot being written about self-compassion now, which is linked to acceptance. There's a Centre for Compassion and Altruism Research at Stanford Medical School. This past weekend CBC's Tapestry program interviewed Thupton Jinpa, a Tibetan Buddhist monk who developed a course in Compassion Cultivation Training at Stanford. He's also published a book called A Fearless Heart: How The Courage To Be Compassionate Can Transform Our Lives.