Zookeeper in training

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What works in the clinic may not work in the real world

By Steve Ryan

Most people assume that technology is a game-changer for children with disabilities. Using it helps kids to walk faster, wheel further and communicate better. You can see the difference it makes. It levels the playing field. It turns disability into ability.

Or does it?

Why is one in four assistive devices abandoned by families?

Why do 50 per cent of Canadian parents with children who lack functional speech say that none of their child’s communication technology needs are met and a further 20 per cent have only some of these needs met?

Why do more than 3,000 American children who use wheelchairs and walkers have serious falls that result in trips to hospital emergency departments each year?

We do not know.

What we do know is that assistive technology can be pricey. This is partly because many devices must be custom-made or individually adapted by clinical teams. It’s also because the market for these products is small and spread out geographically.

We are fortunate to live in Canada. Our healthcare system provides universal coverage for medically necessary services based on need rather than ability to pay. Provinces must meet the conditions set out under the Canada Health Act to get an annual share of $30 billion dollars in federal funding for their health insurance plans.

Yet the Act is silent on what services are medically necessary. That’s why provinces vary widely on which technologies they fund.

Ontario’s coverage is substantial compared to many. The province funds about 75 per cent of most “essential” assistive devices for everyday activities. Wheelchairs, walkers, speech devices, powered prosthetic hands, and ankle-foot orthoses are among 8,000 devices co-funded by the Ontario Ministry of Health and Long-Term Care through its Assistive Devices Program.

The program requires rehab professionals with special training to assess device need, discuss options with children and families and prescribe equipment. Families must buy or lease their devices from registered dealers to get provincial funding. Technology teams must also teach children and their families how to use some devices.

With all of these checks and balances, isn’t it reasonable for families to expect that these essential technologies will work?

As a research engineer at Holland Bloorview in the ‘80s and ‘90s, I teamed with therapists, families, and manufacturers to develop better wheelchair seating, custom car seats, and special toilet seats for kids who needed support to sit. 

Under controlled conditions, we showed that kids who used our seating devices sat straighter and wheeled a chair better. We crash tested our special car seats to prove they were as safe to use as car seats sold in Toys-R-Us. We demonstrated that kids could sit on (and use) our toilet seat product on their own without being held by Mom or Dad. 

We assumed that this meant that our devices worked—and that they would work the same way in the real world, in family’s homes and communities.

We think differently now. We recognize that benefits we observed don’t necessarily translate into lasting changes in how a child functions in the real world.

The International Classification of Functioning, Disability and Health (ICF) is the World Health Organization’s framework for thinking about measuring function: a child’s ability to do and take part in everyday activities. The ICF views function as an outcome of the interaction between the child and his environment. It considers technology as an environmental resource that can influence a child’s everyday activities.

So we think more now about how devices help kids and families do the things they want to do. Our teams consider how and why technology may help kids develop and their families live better.

We are developing much better ways to measure functioning that may be affected by devices. We ask families questions that go beyond “How much do you like the device?” We focus questions on activities that may change after getting new or different technology. 

For example, we want to learn how communicating with friends and asking an unfamiliar person for directions changes after getting a new communication device. Or whether, with a specially-designed seat, a child can now sit at the table to eat dinner with the rest of the family.

Of course we realize that we need to give children time to learn how to use a device and for families to work it into daily routines to really understand its influence. Important life changes may take days, weeks, or months to see. Sometimes changes may not happen. And sometimes no change is a good thing. For example, technology may enable a child with a degenerative condition to maintain an ability he or she would otherwise lose.

We know that products and services may affect children and families in different ways. Our teams observe and ask questions many times before and after kids get their devices because how they use them may change with time and among family members. The tricky part is being able to understand how much change is due to the child’s device, something else we measured, or something we may have missed. 

For example, consider a mother with young children in a small apartment. She may decide that even though a special seat that allows her child to sit independently on the toilet works, the product is too bulky to store when not used. She’d rather hold her child on the toilet.

Or perhaps stress in the family—a sibling birth or a return to full-time work—means that parents can’t follow through in supporting their child’s use of a communication device. So technology that seemed to support a child’s communication needs loses its impact at home.

Sometimes parents working on many goals with their child that involve technology and therapy simply can't do everything at once. 

This is why we need to ask lots of different questions and use different strategies to study the impact of technology.

Exploring the difference it makes will give researchers, service teams, manufacturers, policy makers and families clues about how, when, and what devices should be used, recommended, developed and funded.

Most important, understanding functional outcomes will help us to predict when technology that works well in the clinic will work well in real life for children and families. 

Steve Ryan is a senior scientist in the Bloorview Research Institute.

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Hanging around

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Poor health care a factor in early deaths

A 2013 inquiry into the deaths of 247 adults and children with intellectual disability in England and Wales found women with intellectual disability died 20 years earlier on average than the general population and men with developmental disability died 13 years earlier.

The confidential inquiry, led by a senior research fellow at the University of Bristol, also found that people with intellectual disability are two and a half times more likely than the average person to die before age 50.

The researchers compared the deaths of people with intellectual disability with a group of people without disabilities who died at a similar age and of a similar cause.

They found over a third of the deaths of people with intellectual disabilities could have been avoided with good health care—more than three times the proportion avoidable in the general population.

"Significantly more people with learning disabilities experience difficulties in having their illnesses diagnosed and treated," lead investigator Pauline Heslop says. "The inquiry found all aspects of the provision and co-ordination of care for people with learning disabilities was worse than the group without learning disabilities."

Writing at Conversation, a news website sourced by researchers, Heslop provides two examples:

James, who was taken to [emergency] after he collapsed with bleeding from his nose and mouth. Hospital staff were convinced he had only had a seizure despite his family saying they hadn't seen this happen. But an MRI scan later showed a haemorrhage. His family said that he had been in pain from 7 a.m. to 5 p.m. because they hadn't been believed.

Rachel developed a cough that gradually got worse. A general practitioner prescribed antibiotics but despite further requests for help, her mother was told Rachel would be better by Sunday. By then her condition had worsened. She was taken to hospital where she still didn't receive appropriate care. She died of aspiration pneumonia.

In addition to problems with care, "families of people with learning disabilities more commonly felt that professionals didn't listen to them," she writes. Of the deaths studied, 30 per cent of the people had limited verbal communication and 22 per cent did not speak at all.

At the time of their deaths, 64 per cent of the people lived in residential care with 24-hour paid carer support.

As I read this report I couldn't help recalling a chilling case I'd read about in The Night Shift by emergency room Dr. Brian Goldman, host of CBC Radio's White Coat, Black Coat.

Dr. Goldman shares this story of the emergency room misdiagnosis of a man with autism by Dr. Bruce Campana at Vancouver General Hospital.

"Some poor guy came in and he was autistic and about 30 years old. He was brought in screaming and violent, and he would try to reach out and grab people. The care woman came and said, 'Look, he always gets like this when he is constipated. Can you just give him an enema and get him out of here?' We gave him an enema. The guy was still screaming and yelling. 

"The care people said, 'This always happens. Can we just take him home?' So he went home. I came in for the next shift. You know that feeling when somebody looks up and they say those fateful words: 'Do you remember that patient you saw last night? He's dead.' 

"He, of course, had a ruptured appendix."

Dr. Goldman says he asked Dr. Jerome Groopman, a Harvard professor and the author of How Doctors Think, to analyze the mistakes made by Dr. Campana and his colleagues in this case.

"These are some of the hardest patients to take care of: people who are mentally ill, people who have developmental disorders like autism, and so on. 

"First, let's start with what is called a framing error. So this 30-year-old autistic man is put in the frame of 'constipation:' he's often constipated. We also have an availability error, meaning that what first came to mind is the diagnosis that occurred in the past. He's been constipated in the past. This is the same pattern so it's the same thing. That's what is most available in your mind. That also causes a cascade of what is called diagnosis momentum— it's like a boulder rolling down a hill gathering force. This is what it is; this is what it has been in the past. 

"There is also what is called an attribution error, and that is on the emotional side. We tend to find difficult patients [such as] people who we can't connect with emotionally, like autistic people or mentally ill people, difficult to handle. We don't like them often when we are physicians because they make our lives much more difficult. It is difficult to get a history from this man. So we are more apt to quickly attribute whatever is going on to this stereotype that we have, which is a flailing autistic man, and we want to get him out of the emergency department as quickly as possible. All of those factors in thinking and feeling coalesced to cause this tragedy."

I'd like to see a North American study that mirrors the one done in Europe on early preventable death in people with intellectual disability.

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A walk

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Animator finds beauty in what we try to hide

Rachel Johnson is a Hollywood animator producing stop-motion films that fall decidedly outside the celebrity culture of her town.

Her latest, Henrietta Bulkowski, is about a young woman with a severely curved spine who wants to see the world but can't even lift her head. With a sightline only of the ground, she builds a plane with a hole in the bottom to take her on her voyage.

The Toll Collector (above) is about a ballerina with abnormally long legs. She dreams of being a dancer, but instead hides her physical difference by taking the night shift as a road toll collector.

"As the film wrapped, I realized I had spent two years building and filming the most intimate secret I had," says Rachel, founder of Lift Animation. "My own shame." 

Rachel, who grew up with one leg four inches shorter than the other, had multiple operations as a teenager to break the bones in her short leg and stretch them with fixators over months in hopes of evening out her legs. But after years of complications that resulted in infections, accidental breaking of her bones and the need for reconstructive surgery, her leg was badly scarred and unusually shaped. And it would still be a bit shorter.

Rachel had dreamed of leaving the hospital to become a ballet dancer. Instead, she resigned herself to wearing long pants and pretending she wasn't different. 

But the years of painful procedures came out in her dreams. "I had nightmares about the hospital and everything that had gone wrong and being disfigured."

The only thing that eased the disturbing dreams was making art. "I didn't know what I wanted to do specifically, but it needed to start out undesirable so I could make it beautiful," she says.

She began by making sculptures of overweight women. "My mom was always overweight and thought she was fat and ugly. I thought she was beautiful. My whole senior art show was beautifying overweight women. Other people thought they were really pretty and I realized I had the power to change the way people see things."

She moved on to photography of seniors, and then stop-motion animation, creating tiny puppets from clay that are animated when still pictures of them making incremental movements are run as a sequence. "I've always wanted to sculpt realistic things with a twist," she says.

Rachel is currently pitching a feature film with a non-verbal character.

As she's been so successful in conveying the beauty and humanity of characters with physical differences, I wanted to know if she had considered a character with an intellectual disability.

"I did a short film about a woman with Alzheimer's but I got a lot of flack for it," she says. "It was a total failure. As the protagonist of a feature your character has to go through a character arc, where they start one way and end a totally different way. The woman with Alzheimer's had no control over how she was going to end her life so it was hard to craft an arc. She was incapable of the change and growing and learning most people can relate to."

Rachel says a child with intellectual disability would be an equally hard sell. Viewers "can't see the value of a person unless the person is in some way like them. If the character doesn't have the ability to change on a level that most people can relate to, they can't connect with the character. They don't get it."

I'm interested in how we can change stereotypes about disabilities that are deeply embedded at an unconscious level: these are biases that underpin a culture and which we are all raised on.

This gave me food for thought, listening to Rachel explain how the limits of narrative structure made it challenging to tell the story of a child with intellectual disability in a way that would have meaning for most people.

"There isn't enough exposure," she said. "People don't understand empathy because they don't have to. One of my very best friends grew up very sheltered. Nothing ever happened in her life. She would ask me the most inane questions about my leg. Then she moved to Africa for a year and she lost 40 pounds because she was so heartbroken by the pain and poverty and she changed. She became an empathetic person. But you have to be 'out of the box' to get out. Most people aren't born with empathy."

I hope Rachel takes on the challenge of creating characters from the most marginalized of populations, including mental disability, and showing us a different picture.

A longer interview with Rachel will appear in the December issue of BLOOM magazine.

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We call this 'zoo camp'

When we walked in to Nova's Ark camp this morning there was a large black pig sleeping on the lawn beside a pen with dozens of guinea pigs. 

Ben saw the guinea pigs and was fascinated. 

He spent the day on this farm east of Toronto, checking out the snakes, zebras, a camel, a monkey, lemurs, miniature horses and a large tortoise called Thor.

He asked if he could bring one of the guinea pigs home and the owner said he had to ask me. I guess we'll do a little research on guinea pigs first. 

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Camp

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A different story

The last year has been tough for Ben. He often acted out at school where the demands seemed too much. Outside of school his world seemed to get smaller. It's hard to find activities for him that he enjoys and can participate in easily. He doesn't get enough exercise and is content to sit at the computer or TV for hours.

So imagine my surprise when I learned that Ben was becoming quite the aqua plane champ at Camp Kennebec. It's hard to see, but if you look closely in the pic above (or zoom in on it), you'll see Ben being pulled on a board behind the boat. 

He holds on to two ropes with knots in them.

In the last three weeks he's also done: tubing, horseback riding, water skiing, music, woodworking, arcade, puppetry, talent show, canoeing, sailing, swimming, go-karts and kayaking.

At the carnival a week ago, Ben chose to be the person to sit in the booth while people try to hit a target. If successful, a nail punctures a water balloon over Ben's head. He participated in the talent show where another camper sang his favourite song: When somebody loved me (Jessie's theme song in Toy Story).

Here's an update from Coco, our friend who is with him this week at camp:

"Ben is becoming a pro on the aqua plane. He didn't even say 'no' once when he was getting into the water yesterday to wait his turn to get on it!  

I am so proud of him. He is excited for the dance tomorrow night. Tomorrow is one of his counsellor's birthday's. Yesterday we made her a card. He knows that tomorrow we will get cake.

It's an overcast day today. Potential for rain is everywhere [Ben's favourite weather] so he has been looking up at the grey skies and just about giggling with excitement.

He has been initiating signing a lot this week and asking a lot of 'why' questions. I've been interpreting for Ben a lot with his interactions with staff and campers here while his counsellors are really taking a lead with guiding him. 

He wrote in his journal the other day: 'I feel happy at camp.'  I think that pretty much sums it up. Camp is great for Ben. I believe he has a true sense of belonging here. The staff here are great with him, as are many of the campers." 

I love picturing Ben, outdoors, waiting for his next turn on the aqua plane. Then, being pulled across the water like he's flying, the wind in his hair and an ear-to-ear grin on his face. Occasionally he'll burst into laughter, but he'll quickly pull himself together, otherwise he'll fall off the board. But even if he does fall off, which he does, he's learned how to get back on.

These are the stories I want for my son, the stories that diverge from the disability narrative and what he can't do. 

These are the stories Dr. Paul Browde of New York University spoke of at the international conference on narrative medicine in London in June. 

“Everyone has a story,” he said, noting that “people who are marginalized often feel they don’t have a story.”

Second, there are many stories in every life, he said.

And third, “a good life is one richly described.” This means a good life is one about which many stories can be told...It’s not about stories having a positive spin, but rather about excavating for many different stories to describe someone’s life, which makes the life richly-described, and that is a full life.”

I thank our workers Sallyanne and Coco and all of the people at Camp Kennebec for giving Ben the opportunity to live and tell a different story.

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Does being smart make you a 'better' person?

When I was at university (yes, decades ago!) I think I felt that I was somehow "responsible" for my intelligence. That I'd made a choice to be "smart" while others make choices to be athletes or runway models or contractors.

I think I was even a bit smug about it. 

I remember a conversation with a friend that went something like this: "If you could be smart OR beautiful—but not both—what would you choose?"

I was flabbergasted when my friend (who happened to be brilliant and was once a child model) chose beauty. She felt it was more important to be beautiful than smart, she said. She felt it could get her further in the world. 

This seemed shallow to me. I thought of beauty as something that a person had little control over. You're either born with looks that fit Western standards of beauty—or you're not. And looks can't tell you anything about who a person is inside, I thought. Looks can't make you a "good" person.

It's taken me all these years, and the birth of my son with intellectual disability, to realize that I didn't in any way "earn" my intelligence, or "work hard for it," and it certainly wasn't a "choice."

It was an aptitude bestowed on me at birth. It was luck.

For some reason, I'd grown up believing that smart people got where they were because of some combination of moral superiority and hard work. That they'd chosen to be smart. And that there was some kind of higher good associated with intellect that didn't exist with other human attributes.

I was reminded of this mindset when I saw intelligence described as "the highest virtue" in this article by Columbia University professor Rachel Adams, who has a son with Down syndrome.

Her piece begins: "Last week, a doctor told us our 4-year-old son's IQ is 67."

Adams recounts the process of having her son tested and, how, even though she knows the weaknesses of standardized testing, the results were devastating.

"Much as I recognized the flaws in the test, I found it impossible not to care about the results," she writes. "I know how much they matter. Between us, my husband and I have nearly 25 years of higher education, three master's degrees, two Ph.Ds and a J.D. We've gone far in life by being extremely good test takers. I teach at an Ivy League university where intelligence is held to be the highest virtue. It was cause for celebration when the SAT scores of our first year entering class outranked those of Yale's. I see the opportunities made available to students who, because of talent or training, know how to succeed at standardized tests."

It was Adams pairing of intelligence with "virtue" that made me balk.

I've always considered virtues to be various kinds of human goodness. In this online Oxford dictionary reference virtue is described as:

"Behaviour showing high moral standards: A quality considered morally good or desirable in a person."

Virtue is also described as a "useful" quality of a thing (e.g. "these are his greatest virtues") and in the archaic sense of chastity.

By describing intelligence as "the highest virtue" at Columbia, Adams seems to give it a moral quality (though perhaps she meant simply to say it is the most "useful" human attribute).

Intelligence—which is largely dicated by our parents' genes—has nothing inherently to do with goodness. It can be used for good, and it can be used for bad.

Because Adams ranks intellect 'numero uno" among virtues, the reader is nudged to consider the traditional theological virtues of faith, hope and charity (love). Is Adams suggesting that intellect has surpassed these as a moral good?

I don't think she is—because she goes on to say that the best rejoinder to her son's low IQ score was to be found at home, in "the warm reality of my complicated child," a boy she sees as "clever and funny and full of potential."

I do, however, think Adams is underscoring how quick our culture is to define intellect as the most precious of human qualities, and to assign a moral characteristic to it: Smart people are good people. 

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Love: It defies measure

Imagine my surprise and delight when I received this story by Eric Fischer, dad to Segev, 15, in Israel. Many of you know Eric as the author of I am a broken man/You can't break me, a personal blog that Eric recently closed. Eric was born in Holland and has lived in many places. He's trained in traditional Chinese medicine and shiatsu and is an intuitive bodywork therapist. Thank you Eric for this important piece! Louise

Love: It defies measure
By Eric Fischer

I have to wonder at the audacity with which we are judged by others. 

Of course it happens to us each day and we may even be guilty of it. But nowhere is it more alarming than when we feel our children’s lives deemed unworthy because they are severely disabled. 

As a parent providing round-the-clock care for my son for 15 years, there are many constants in what has become our tiny, hermit-like life. Unfortunately, judgment is one of them.

It may come in the form of "What is the point?" when discussing the care of my son. "Isn’t he suffering?" is asked, sometimes in tandem to suggest that I've had no reason to be taking care of him all these years. “You have no life," is the nail in the coffin.

It seems incomprehensible, even to those well-intentioned, that my life providing 90 plus hours of care to my son each week is as fulfilling as it is difficult. That in the process of this caring there is a place for personal growth: an opportunity to experience a connectedness at the deepest level of our humility, an opportunity to define our humanity.

Each day my son has countless seizures and multiple respiratory therapy sessions. He must be fed and toileted and given a large number of medications. Surgeries have left him scarred and debilitated as his paralyzed body slowly collapses in on itself.

Strangely, the practical difficulties this presents don't disturb me nearly as much as the ignorance expressed by people who feel the need to project negativity on our lives. This includes doctors who counsel "You should think about having another child, don’t bother with this one,” to bioethicists who maintain that a sick child, if also disabled, doesn't possess a life worth living.

For years I remained calm when these comments were made. After all, we're all mature adults, simply discussing matters dispassionately, aren’t we?

I tried to convince whoever I was speaking with by gently pointing out the good moments in our life. I never invoked the "sanctity of life" dictum, so frowned upon by academics. In The Netherlands they've already found a way around the "sanctity of life" argument: the bioethics of utilitarianism hold sway and, without a public referendum, the term "unbearable suffering" has become the catch-all to justify doctors encouraging parents to agree to "assisted dying" of newborn disabled children.

But this view is based on more than one omission. We are human beings, still caught in a process of development and indeed, in need of development. As evolving beings we need to progress in some of our most lofty virtues, such as caring for one another and the understanding it brings of our inherent equality as humans. The ethics behind discounting the worth of a disabled, ill child suggests that we are only equal when we are "the same."

I no longer attempt to defend my position in these discussions. Instead, to those who judge my son's life as meritless I say: "Try it." Raise an extremely physically and mentally compromised child and then, and only then, tell me what you think. You can't express opinions with deep, life-and-death ramifications when you lack basic knowledge of the subject.

Of course most people won't have the opportunity to try this kind of "extreme parenting." So the next best thing, for those who want to develop an informed opinion, is to speak to parents who are raising, or have raised, these children. Yes, speak even to the parents who have lost their child. Ask them about their experience and I dare you to find someone who weighs in solely with regret. Ask them if it was worth it. Ask them if it contributed something real to their lives.

I don’t think many parents, when their child is given a strange look at the park, enter into a discussion of bioethics with the perpetrator. And I find everyday people who give “the look” are not usually in the least bit nefarious. 

However, I am worried about policy makers, bioethicists who sit on medical boards, like the ones in Great Britain, Belgium and Holland, or someone like Peter Singer in the United States. These people cloak their bias in reasonable-sounding arguments: as Horace called it, ecipimur specie rectie (We are deceived by the semblance of what is right).

Many people are dazzled by our information age's ability to express the human genome in a series of ones and zeroes in a computer. But we can't reduce our love of and care for a child to a number, to a quantity of human worth.

Caring night and day for a disabled person changes us. Allowing it to change us is an exceptional and worthy endeavour, especially in light of the fact that we naturally recoil from change. Change makes us uncertain, and parents willing to partake of this life are the very definition of courageous pioneers.

"Given the chance, would you do it again?" is a question asked of parents like me on forums and in news story comments. It's often used as a trump card to silence those who defend the value of children like ours.

Would I do it again, if given the choice? Allow my life to be turned upside down and inside out? To lose financial stability, any semblance of certainty in life, and comfort? To see aches and pains and chronic fatigue turn to ailments? To watch others continue their lives with social connections, vacations and friends?

Would I choose to suffer the heartache of those moments when my son’s life seemed to slip away, only to marvel and be filled with gratitude as he bounced back, again and again? And until when? Would I choose to share in those simple moments of connection, when life is reduced to its most valuable elements?

Yes. In a heartbeat, I would. 

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Nature fix

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