U of T docs say ridicule, yelling, rude emails a part of their world

By Louise Kinross

A new study in Academic Medicine looks at uncivil behaviour among doctors—from eye rolling and open ridicule to yelling, throwing objects, sending unkind e-mails and posting disparaging social media comments. University of Toronto researchers interviewed 49 doctors who are faculty in U of T’s department of medicine and work at six teaching hospitals to describe rude behaviour they see or experience, and look at organizational ways to prevent or stem it. The study references a systematic review that showed almost 60 per cent of medical trainees reported experiencing harassment or discrimination, and another study in which 30 per cent of physicians said they saw rude, dismissive or aggressive behaviour by doctors on a weekly basis. BLOOM interviewed co-investigator Dr. Reena Pattani, who works in internal medicine at St. Michael's Hospital.

BLOOM: Why were you interested in this topic?

Reena Pattani: I have immense job satisfaction and a lot of meaningful work relationships, but I think there are always ways to improve the culture of a workplace. This project emerged from a collaboration with senior author Sharon Straus, where we looked at data from a 2015 survey that showed that while faculty in our department have many positive, collegial relationships, many had observed, heard about, or been affected by uncivil or unprofessional behaviour.

We wanted to look at how the organization can play a role in responding to incivility, rather than resorting to solutions that focus only on the individuals perpetrating it. We looked at workplace factors that breed stress and burnout, and create heightened emotions that can lead to a toxic environment.

BLOOM: Is kindness a simple definition for civility?

Reena Pattani: It is. We talked about an obvious moral definition of civility in terms of the Golden Rule: Treat others as you wish to be treated. There are also practical reasons that we need civility in a workplace that has the complexity of medicine. We have people coming together to take care of patients suffering from acute or life-threatening conditions, and incivility may have an impact on patient outcomes.

BLOOM: How did you define rudeness in your study?

Reena Pattani: We didn’t want to be prescriptive. We asked our participants what they had witnessed in terms of form and content. There were three big categories in terms of form. Furtive behaviours included eye rolling or muttering derogatory comments or exclusion. There were face-to-face incidents like ridicule, a personal attack, interrupting, yelling or throwing an object. The third type was online: not responding to e-mails, or responding in a passive-aggressive way, or posting a disparaging comment on a social media platform.

BLOOM: What was the rudeness about?

Reena Pattani: There were disagreements about next best steps in a case, or treatment recommendations, collaboration on a publication, negotiations around promotions or remuneration, and workload distribution. There were instances of discrimination based on seniority or sub-specialty or the way scholarly time was being used in an academic centre.

BLOOM: It was interesting that the paper refers to these behaviours as ‘low intensity,’ even though it includes bullying, which probably isn’t perceived as low intensity by the person experiencing it.

Reena Pattani: I appreciate that feedback. By calling it low intensity we’re not trying to minimize its seriousness or impact. It’s more that these events were perceived as being ‘sub-threshold’ to report. People experienced something unsettling, but there wasn’t a clear pathway to bring it to someone’s attention.

BLOOM: Did anyone identify targeted discrimination based on race or other types of diversity?

Reena Pattani: We didn’t specifically inquire about that and participants didn’t volunteer that information in their answers. Absolutely that warrants further exploration. The tough thing about studying that is that you need to develop a study that ensures people aren’t identified.

BLOOM: You interviewed each doctor for up to an hour each. Were you surprised by anything you heard?

Reena Pattani: Yes, absolutely, though I wasn’t involved personally in the interviews. There were a lot of surprises with regards to the types of experiences people had and the egregious nature of their experiences. Also, one of the challenges was respecting their privacy and the confidentiality that is required to undertake a study like this.

BLOOM: I found it interesting that while most interviews were done by phone, a couple of participants asked to do them in person.

Reena Pattani: Yes, we had an ethics amendment to create safer processes for participants to share their views. Some people felt more comfortable doing the interview in person. We wanted to be really thoughtful about how we respected individuals who participated, and we gave them the opportunity to review their comments. Twenty-five people reviewed their comments, five edited them and one person chose to remove comments.

BLOOM: It shows how cautious and afraid people are. When respondents talked about the negative impact of rudeness on patient care, did they give examples?

Reena Pattani: The conflicts were around consultations and treatment recommendations. The downstream of that is that people might be less likely to reach out to a terse colleague in the future, so you could see poorer collaboration.

BLOOM: I was so interested in your work because I reported on an Israeli study where they showed in NICU simulations that rude words from a parent or medical colleague impaired individual and team performance.

Reena Pattani: That was a very impressive study. Those things are harder to study in a natural environment, but a lot of this evidence needs to come together to understand the impact of this lack of professionalism and devise strategies to counter it.

BLOOM: Doctors in your study identified their non-employee status in hospitals as a contributor to rudeness. Does that mean because no one is there to police behaviour, they take advantage?

Reena Pattani: No, I don’t think they’re taking advantage. This was something specific to the Canadian context. In our academic system in Toronto, physicians are considered self-employed. They're appointed to a hospital or university, but they operate on a fee-for-service basis paid for by the Ministry of Health.

Most physicians in Toronto's academic hospitals don't receive funding from the university or hospital. So it may be hard to know where the jurisdiction is to respond to poor behaviour, whether it’s at the hospital or university level. There’s also a sense that there are only extreme levers to respond to unprofessional behaviour, such as revoking hospital privileges or a university appointment. Our participants felt that there wasn't an obvious way to report these things.

BLOOM: Doctors also identified silos between the hospital and university and within department divisions as contributing to a more impersonal and hostile environment.

Reena Pattani: They don’t directly make things more hostile, but when the environment is more impersonal, it lowers the threshold to exhibit curt behaviours. You have relative anonymity. If you’re rude to someone, it won’t have a direct impact on you, because it’s not a relationship that you’re cultivating on a daily basis, over time.

BLOOM: Respondents felt that leaders may have encouraged a competitive environment. Are these medical leaders, and does this start in medical school?

Reena Pattani: There are many incredible leaders operating in the hospital and the university. But occasionally, a leader may be promoted for other skills, like excellent long-term vision or strategy, but their skills or ability to recognize and act on incivility isn’t as high.

One of the reasons we wanted to study incivility in an academic centre is the idea of the hidden curriculum in medicine—that there are things that are learned that relate to norms that aren’t found in textbooks, but from apprenticeship and observation and role-modelling. If uncivil behaviours don’t go addressed, it sends a message that this is a social norm that is acceptable.

BLOOM: Doctors in your study referred to a culture of silence.

Reena Pattani: I think there’s discomfort around reporting. Or there may be a history where something is reported, but the unprofessionalism goes unaddressed, because leaders aren’t equipped with the right training or resources to address it.

BLOOM: So people are less likely to report in future.

Reena Pattani: There may also be a fear of reprisal or retribution.

BLOOM: I was surprised that the doctors didn’t identify the emotional side of working with patients who are suffering or dying as a contributor to rudeness. You do mention at the end, under root causes, emotional burnout.

Reena Pattani: The honest truth is it may reflect the fact that we didn’t specifically ask about that piece. In the conclusion, we talk about root causes, and not necessarily attributing uncivil behaviour to a personality issue, but considering issues like burnout or mental health. In our introduction, we also highlight the existential nature of the work, which involves taking care of patients who are sick, and how it can take a toll on healthcare providers.

BLOOM: We did a narrative group with our inpatient nurses, and they came into the group thinking they were the only ones experiencing emotions like helplessness, grief or regret, and that they had to hide them. Through storytelling, we were able to show that everyone experiences these emotions. That reduced stress, because they didn’t feel like they had to walk around pretending they were invulnerable, and they were more likely to reach out to co-workers proactively to come up with creative solutions to difficult clinical and family situations. I wonder, if you change only organization structures, but you don’t help doctors better cope with suffering, whether rudeness would continue to be an outlet?

Reena Pattani: There is a growing recognition of the emotional toll of this work, and there's a movement in narrative medicine that's currently being embraced by many physicians. A lot of hospitals and universities are doing local interventions. At St. Michael's Hospital, we hold Reflections on Medicine rounds where some of my colleagues facilitate discussions on topics like making mistakes and end-of-life care. We also have members of the university's department of medicine leadership team who have experience with narrative medicine, and are leading efforts to integrate it into our training programs.

BLOOM: What were the main ways doctors suggested for reducing rudeness in your study?

Reena Pattani: They were grouped under three headings: prevention, reporting, and addressing incivility. Under prevention, they asked for clear definitions of incivility that included examples. A suggestion was to share examples, while maintaining anonymity, from within our local department, to serve as an education and deterrent tool. Doctors want more transparency around how resources are allocated, not just in terms of remuneration, but also including research and admin support, as this will minimize competitiveness.

In terms of reporting, they suggested anonymous online reporting, having designated individuals within departments who could serve as an ombudsman or advocate, or an external party to ensure complete independence.

They also asked for role clarification to determine whether the hospital or university is the jurisdiction to deal with incivility. There were calls for very clear processes, timelines, and consequences, with an emphasis on fairness and rehabilitation for both the victim and perpetrator.

From a workplace culture perspective, there were suggestions to use citizenship and professionalism as factors in decision-making about who gets awards and who’s promoted, so that there’s a clear expectation that professionalism is an essential skill.

BLOOM: What is the main message you hope hospitals take away from the study?

Reena Pattani: I think health-care organizations are increasingly appreciating the role they can play in shaping culture and in setting the tone for professionalism. Our participants were able to offer a frontline perspective on some of the organizational factors that contribute to incivility, and also ways organizations can be more proactive in preventing and addressing it. A lot of solutions need to be tested, but the ones that came out in our study are fairly low cost and easy to implement.

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A toileting taboo: Kids and incontinence

Pee and poop. We all do it. But what if you couldn’t control when you ‘went?’

What if catheters, timed toilet trips, medication, diapers and sometimes surgery couldn’t guarantee that you wouldn’t have an accident?

How would you keep it a secret?

How would other kids treat you if they found out?

Urinary incontinence and how it impacts children socially was the focus of a qualitative Holland Bloorview study of 11 youth with spina bifida aged six to 18 and their parents.

“No one can tease the kid in the wheelchair, but it’s not ‘normal’ to be in a diaper when you’re eight-years-old,” said lead researcher Amy McPherson, recounting what children told researchers in interviews about how other students responded to their incontinence.

Researchers found that about half of the children were bullied – with a couple being completely ostracized – and most had no close friends. “One parent said she hadn’t organized a birthday party for her child because she didn’t think anyone would come.”

Two children who had learned to self-catheterize at an early age did have good friends and participated in typical childhood activities like sleepovers and camp.

But telling their friends about it was nerve-wracking, Amy said.

“Even the kids who functioned well said, ‘Well, I decided to tell my friends before they found out and ran away screaming.’ And even those kids didn’t share ‘the whole story.' They just told their friends they do things a little differently.”

Toileting in our culture is one of the last taboos, and for students, having an accident or a partially-visible diaper was “social death,” Amy said.

One of the themes that came out in interviews was that incontinence marked youth who wanted to be viewed as normal, and was a barrier to being accepted, having friends and going out.

“Because of the stigma, and the fear that others may find out, these students don’t often put themselves out there and instigate friendships,” Amy said. “It’s not something you want to talk about. You have to keep it hidden.”

“These kids feel stress to keep up a façade,” said researcher and ambulatory care nurse Julia Lyons. “Their goal is to fly under the radar, ‘for no one to notice me.’”

Ironically, parents who were interviewed separately from their children often began by insisting that their child was a normal and regular kid. "Then as the interview went on, it became obvious that their child didn't have friends and wasn't participating in activities, sleepovers, sports," Amy said.

Another theme was independence. “A lot of parents wanted their kids to take ownership of the incontinence issues and felt they needed to learn to do it themselves,” Amy said. “There were still 16- and 17-year-olds who weren’t catheterizing themselves. They used a diaper and had mom do their personal care.”

However, parents sometimes minimized just how hit and miss managing incontinence was for the youth.

“There isn’t a magic bullet for this,” Julia said. “It’s not like if you break your arm they give you a cast. These kids have to do a combination of catheterization and taking medications to allow them to hold more urine and using diapers and pads and even then it’s not 100 per cent effective.”

Drinking a can of pop, participating in gym class or simply being nervous can erase children’s vigilant efforts to stay dry. “The system is so tenuous they’re walking on egg shells on the best of days,” Julia said.

However, parents tended to expect perfection.

“One parent said: ‘She fell off the wagon’ – about an eight year old!”

The researchers noted that some students who did self-catheterize still wore a diaper as a security measure and were reluctant to let it go. They live with the fear that "tomorrow their routine won’t work," Julia said.

School accommodations – such as having students use the staff washroom where they can store their supplies – often reinforced the perception that they were different.

Typically children’s incontinence wasn’t shared with the class, but the student would have a signal to let the teacher know they needed to go to the bathroom, and would be taking longer than expected.

Unfortunately, some of these signals were stigmatizing: “In one case, the Grade 5 student had to place a giant, city-issued traffic cone on her desk to say she’d be back in 10 minutes,” Julia said.

Families reported a lack of incontinence products that were discrete and effective.

The researchers note that negative stereotypes about “having a leaky body” don’t just exist in childhood. “Adults who are incontinent are less likely to have meaningful employment and romantic relationships, so there are long-term implications for children with incontinence,” Amy said.

A larger study is needed to better identify what promotes continence and social acceptance in children with spina bifida. One tool to support children may be an online group where children who are going through the same thing can share their experiences.

This small study was launched because clinicians heard frequently that children with spina bifida and incontinence were bullied.

Dr. Paige Church and Nicole Fischer were the other researchers on the team. Their findings will be presented in a poster at the Bloorview Research Institute Symposium Nov. 13 and submitted to the journal Disability and Rehabilitation.

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Who decides what's beautiful?

This adorable little tot is the face of a new advertising campaign by Spanish swimwear designer Dolores Cortés according to Adweek. "People with Down syndrome are just as beautiful and deserve the same opportunities," Cortés is quoted as saying.

Amen. This was a bold step in a business that typically renders children and adults with disabilities invisible. How often do you see children with disabilities featured in ads or mainstream media? What about parenting magazines? And not as part of a 'niche' story about a particular type of disability, but as part of the broad 'landscape' of childhood, which, in reality, they are?

A couple of weeks ago I flew in to Toronto's International Airport and walked under a massive billboard featuring children from diverse cultures. The creators must have gone to great lengths to ensure this rich representation. But no child with disability was included. Why?

Turning Valentina (above) into a swimwear model proclaims loudly and clearly that children with differences are here, they're gorgeous, and they're valued. Disability is normal.

"Representation in media is a form of acknowledgement by society," disabled British model Shannon Murray writes in The Independent. "...Consider Cherylee Houston’s character, Izzy, in Coronation Street or Cerrie Burnell presenting on CBBC. Both received press attention because of their difference, but now that is barely mentioned, they are simply accepted by viewers as performers on television like their able bodied colleagues. I welcome the day when we might have a kick-ass Disney heroine who just happens to have a disability so disabled children can see representation from a young age."

I'd like to see a Disney heroine with an intellectual disability.

On an oddly related note, a friend posted a link to this San Francisco Chronicle story about a New York charity that offers free plastic surgery to typical children who have been bullied because of their appearance. No, you didn't read that wrong! Featured in a CNN video included with the online piece is Nadia, a typical 14-year-old girl who was bullied for her protruding ears. The Little Baby Face Foundation covered a $40,000US procedure to have Nadia's ears pinned back. But they didn't stop there. The surgeon who saw Nadia decided her nose and her chin needed some work too.

Some of you remember my blog about an otoplasty my son Ben had that wasn't successful. To be fair to Little Baby Face, the stated objective on their website is to offer free plastic surgery to children with craniofacial 'deformities' like my son -- not to those who are teased for typical features.

However, the idea that a solution to bullying for a girl like Nadia is to change her appearance -- rather than the perpetrators' behaviour -- reminded me of a trend in the 1990s to 'normalize' children with Down syndrome through plastic surgery. It wasn't uncommon then for children with Down syndrome to undergo procedures that included shortening the tongue, removing skin folds from the eyelids and pinning the ears.

And this is how the Little Baby Face plastic surgery story circles back to little Valentina's ad campaign above.

French research* published in April this year showed that adults evaluating photos of children with and without Down syndrome were more likely to rate children with Down syndrome less favourably if they had features 'highly distinctive' of the disorder. This would seem to suggest that children with Down syndrome whose features have been 'muted' through surgery will be better accepted socially.

Of course that's not a reason to do the surgery!

The same French researchers also had adults do implicit-association tests, which capture the strength with which certain groups of people are automatically, without conscious awareness, associated with positive or negative attributes.

They found that at this unconscious level, photos of children with Down syndrome were automatically associated with a negative trait, even by people who had openly rated the photos positively. "People may not have access to some of their thinking which is not conscious," said study researcher Claire Enea-Drapeau. Even when people are outwardly accepting of children with Down syndrome, negative "implicit associations may persist, proving that these associations can be retrieved from memory. These are the result of social attitudes and values carried by our cultural environment. As long as we don't know about them...we are trapped in automatic attitudes or associations. But when you are aware of it, then you can start to struggle."

Rather than excluding children with disabilities from media images -- or trying to make them more 'normal' through surgery -- and staying trapped in archaic stereotypes, I'd like to see kids with disabilities represented in popular culture so that we can begin 'the struggle' Enea-Drapeau speaks of. "If we know we are carrying implicit stereotypes, then we can choose to try to change them," Enea-Drapeau said.

Instead of expensive, painful surgical procedures I'd like to see investment in research on how to uncover and change hidden stereotypes.

*Enea-Drapeau C, Carlier M, Huguet P (2012) Tracking Subtle Stereotypes of Children with Trisomy 21: From Facial-Feature-Based to Implicit Stereotyping. PLoS ONE 7(4): e34369. doi:10.1371/journal.pone.0034369

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Teachers, students ostracize disabled children, study finds

A 2011 Holland Bloorview study sheds light on how children with cerebral palsy are ostracized and bullied at school.

A qualitative study of 15 youth aged eight to 19 with cerebral palsy published in Disability and Rehabilitation found that teachers and peers intentionally shut out children with disabilities. Examples include teachers who turn off a communication device for most of the day – rendering a student silent – and a teacher who refuses to allow a child to have a bathroom communication button because it will disturb other children. As a result, the child, who is toilet trained, must wear diapers.

Sometimes accommodations weren’t made, researchers found. Other times accommodations themselves – such as having students write tests in a different room – set the children apart physically. “There were more and more accommodations I would need that would make me stick out more different,” says one participant.

Many students said they changed schools several times because of the negative attitudes of teachers. They also found teacher attitudes influenced how their peers treated them.

Unintentional peer exclusion included leaving children out of activities because they were perceived as ‘fragile,’ busy with an educational assistant or ‘too slow.’

Intentional exclusion focused on children’s differences and included name-calling and being ignored. “The kids act like I am invisible,” one participant said. Four of the participants had been physically bullied over a number of years, which included being kicked and pushed and physically injured.

Students reported that they didn’t want to tell anyone about the bullying because they were ashamed.

In a follow-up study published in Child: Care, Health and Development, Holland Bloorview researchers asked the same group of youth with cerebral palsy how their participation in school life could be improved.

The students identified three key strategies: learn how to explain your disability to peers and teachers, rather than trying to hide it; improve disability and bullying awareness so students are more comfortable seeking help; and develop friendships by engaging in extracurricular activities. Research shows that having a support network of friends protects children from being isolated and bullied.

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Hate crimes: We have to speak up

A number of bloggers wrote recently about the death of Gemma Hayter (above), a 27-year-old British woman with intellectual disability who was tortured and beaten to death last year by five youth she considered 'friends.'

Disability hate crime begins with verbal abuse

Can the word retard kill? This murder might convince you

Seeds at Schulyer's Monster:

Gemma Hayter's case is a stark reminder that the seeds of societal disregard for persons with developmental disabilities ultimately manifest in abuse, in violence and in death and heartbreak and deep sorrow. If you choose to look, to really SEE, you can follow the line from jokes about "retards" in film and television and the stages of comedy clubs to the young people repeating them on the schoolyards, and you can watch those kids grow into young adults and observe them as they live their lives without empathy or compassion for those who have never had value or humanity in their eyes. Small steps, leading inexorably to a moment where killing a living, thinking, feeling human being might be difficult enough to give them pause, but doing harm to a worthless retard, just for laughs? What's wrong with that? How is the world diminished by a loss like that?

I came across this article written a year ago in the Daily Mail by Katharine Quarmby, the first British journalist to investigate disability-related hate crime. Her book Scapegoat: Why We Are Failing Disabled People was just published:

Cast Adrift, The Lonely Victims of Mate Crimes
By Katharine Quarmby

I became aware of a disturbing pattern four years ago when I was news editor of the magazine Disability Now.

During the previous year – 2006 – eight disabled people were robbed, beaten and brutally killed in a period of just six months, yet each death was seen by police, prosecutors and the media as an isolated incident, a motiveless crime against a vulnerable ¬ victim who couldn’t fight back.

I began to investigate such crimes and discovered that the incidents weren’t isolated and the crimes weren’t motiveless – they were committed out of hatred, rather than because the victims were vulnerable.

Fiona Pilkington killed herself and her daughter Francecca Hardwick after years of abuse from bullies.

There are so many cases: Fiona Pilkington, who killed herself and her disabled daughter Francecca after suffering years of verbal and physical abuse from youths; Christine Lakinski, who collapsed near her own front door but was covered in shaving foam and urinated upon as she lay dying; Brent Martin, who was punched and kicked to death by a gang of youths ‘for sport’, in the words of a prosecutor.

My research, which eventually led to a book, Scapegoat: Why We Are Failing Disabled People, suggests that, although this is a problem with ancient roots, failures in the implementation of modern ‘community care’ policy are also to blame.

The lack of money to fund disabled people’s resettlement was one problem; another was the failure to anticipate the bitter backlash that would ensue. For disabled people had been maliciously stereotyped for at least 2,000 years as either scapegoats, sinners or freaks.

By Victorian times, disabled people were so shunned that many, particularly those with mental health conditions and learning difficulties, were imprisoned in asylums or long-stay hospitals. By the mid-Fifties, the number of disabled people who had been institutionalised had reached a peak of 150,000.

These institutions were, almost without exception, awful places where people with learning difficulties were treated with profound inhumanity.

Then a number of well-publicised scandals in the Sixties brought pressure to bear on the Government to start closing the institutions down.

In 1971, the White Paper, Better Services For The Mentally Handicapped, kick-started the community care initiative, pushing for at least half of those in hospitals to be living in the community by 1990. A similar White Paper, Better Services For The Mentally Ill, was published in 1975 by the Labour Government.

Community care was the right thing to do. But the way in which it was carried out failed the very people it was supposed to help.

Between 1955 and 1975, about 80,000 people left the asylums. But their need for medication, accommodation and support was not met. Community care was done on the cheap.

As early as 1985, a Social Services Select Committee report warned that hospital closures had outrun provision in the community. Even worse, a small number of killings by people with mental health problems sparked a fearful and angry reaction by the general public.

Jean Collins, a campaigner from the charity Values into Action, observed that the closures were characterised by ‘chaos and confusion’.

No one had prepared people with learning difficulties for life outside institutions. They were pauperised too, she said, adding: ‘Many were abandoned in a hostile, fearful society.’

Most were resettled in houses that nobody else wanted, on estates where nobody wanted to live. Many became socially isolated. And it wasn’t long before they were targeted.

Many, particularly people with learning difficulties, were desperate for friendship and were befriended by people who groomed them, robbed them, attacked them and killed them – so-called ‘mate crimes’, a recognised subset of hate crime.

Prejudice against disabled people had only grown stronger because so many had been shut away for centuries. Disability hate crime should have been a tragedy foretold.

But it wasn’t. Such crimes will carry on until we face our own prejudices about disability – and, as a society, start to change.

You may want to follow Quarmby's Disability Hate Crime Network on Facebook.

Today, Bonnie at the Fragile X Files writes about attending Partners in Policymaking, a state program that trains people to advocate for government programs for people with disabilities.

There was a detailed and lengthy account of how people with disabilities have been treated and viewed throughout history. Horrifying stories of torture, abuse, neglect, exploitation, misunderstanding, and disrespect. Nearly every example from history was followed by a recent news story showing us how the very same types of treatment and abuse and misunderstanding occur today.

She begins her blog by describing what is too often the reaction of most of us to these horrors:

You know how when there's a story on the news about a child or a person with a disability being abused or injured or killed, and you tend to turn away or turn it off altogether, because it is just too disturbing and you'd rather not hear it?

It's time to listen and speak up.

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This and that

Sholom Glouberman is a philosopher in residence at Toronto's Baycrest Centre for Geriatric Care, author of the new book: My Operation: An Insider Becomes a Patient, and founder of the Patients' Association of Canada.

This health-policy professor who spent years working in health care felt he 'knew the ropes' before undergoing his first major surgery. He was wrong, and writes about how the acute-care system doesn't respond to the needs of people with chronic conditions and renders them passive.

I found this Maclean's Magazine interview with Glouberman fascinating: On the shock of his hospital experience, patients' rights, and what needs to change.

I enjoyed this Toronto Star interview with Montreal author Joel Yanofsky who's written a memoir about his son Jonah, who has autism: Bad Animals (A father's accidental education in autism).

While all young children have tantrums, Jonah’s were frequent and out-of-the-blue. His wife, an art therapist, coped better with Jonah. “He’d cry and rage and I’d explode,” writes Yanofsky. “I can’t count the number of times I was exiled to the basement...”

Life with Jonah felt like being on a balance beam, says Yanofsky. If he made one misstep, such as slightly raising his voice, the boy might plummet into an afternoon of sadness, anxiety and obsessive talk.

“What was being asked of me simply felt like too much to ask,” Yanofsky writes. “I was afraid that whatever progress Jonah made was not going to be enough. By which I mean – and was as deeply ashamed to admit this seven years ago as I am now – enough for me.”

I never saw this when it ran in the Globe last November:  My son bullies his autistic brother.

And this is an interesting study at Arizona State University looking at deaf kindergartens in France, Japan and the U.S., and how they assimilate students into the deaf culture: Scissors, paste, sign language.

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A tribute to Ben Tobias

Canadian violinist Adrian Anantawan contacted me this weekend to ask if we would pay tribute to Ben Tobias (above with sister Katie), a 14-year-old who was bullied before he took his own life in August. Ben was born missing both legs and his right hand.

Just a few weeks before his death, Ben, who lived in Bothell, Wash., spoke with Adrian, an internationally renowned violin soloist in Toronto who is also one-handed, to learn about how a bow could be adapted so that he too could play the violin. "My husband Mike did a search of one-handed violinists and Adrian's name popped up," writes Ben's mother Jan Davidson. "My husband called him and Adrian was very generous with his time, talking to both Mike and Ben."

After Ben's death, Adrian asked Ben's mother to write an essay about her son. She wrote "A mother's sorrow," below, while listening to this video performance of Schindler's List, which Adrian has dedicated to Ben. Following the essay is a commentary from Adrian. As you know, I have my own "Ben," and when I read this story about Ben Tobias, my heart broke for him and his family. And then I was filled with anger and outrage at the bullies.

A mother's sorrow
By Jan Davidson

My child, my child, where are you now?


I wrap my arms around his sweater and smell his sweet mysterious scent.


He is gone from this earth, gone from my arms, far too soon and far too violently.


I cry the tears that only a mother can cry. I did not, I could not, protect him from his pain. I did not see, could not see, the depth of his pain. Ultimately I failed him.


My sorrow is bottomless and I will live with that forever.


There is a pain when a child dies of disease. There is a pain when a child dies accidently. There is, I think, a much greater pain when a child considers his place on earth, finds it unworthy, and takes his own life.


And when that death is caused by an inexplicable meanness, nastiness and hate, a parent is left with overwhelming feelings of anger and revenge. A state of grace and forgiveness does not come easily or naturally.


My son, my beautiful, intelligent and wonderful son, was bullied. Bullied to death. He was 14.


Ben's life was never easy. Born in Arsenyv, Russia, he was rejected at birth by his parents and abandoned in an orphanage to die. Ironically, the reason we adopted him was the reason he was abandoned. He was a triple amputee, missing both legs and his right hand.


We devoted our lives to him, never leaving him with a babysitter. We nursed him back to health, taught him to walk, ride a bike, swim and tie his shoes. He rose above his disabilities and became a friend to all. He inspired respect and awe wherever he went, yet he wore the adulation lightly. He could never understand why people thought he was special.


He may have been born without limbs, but God granted him an extravagant intelligence. He was a genius, a child savant. He was an accomplished writer and artist and was studying the violin. He had been reading at the college level for years. He could have been anything that he wanted to be. He had the capability to change the world.


Yet as he was struggling to make the leap between childhood and manhood, with all of his issues, certain other children were determined to hobble his trajectory, to cut him down to their level. They began to bully him, in person and on the net. Every day brought a new set of humiliations for Ben. He was assaulted by physical abuse, verbal abuse, taunts and jeers. One young girl made it her life's mission to make him as miserable as possible and sought him out in school and on the net to make his life a special hell. Yet he never told us, never mentioned his humiliations, never revealed his tears.


We had no idea.


So on the warm summer evening of August 7 when his father found his lifeless body in his room, we were racked with "why" and "what if?" It wasn't until later that we pieced together the tortured and painful last months of his life.


The pain of losing a child is an unimagined hell.


The pain of losing a child to bullying is an indescribable descent into blackness. Somewhere out there are children who chose my child on whom to heap their load of scorn, to torture and to laugh at. They sleep peacefully while I am left with only pictures and memories.


We struggle to make sense of their actions. What kind of families do they come from? What kind of people are they now and what kind will they turn into? What kind of society are we creating that nurtures this kind of behaviour? Didn't they see the pain they were causing and didn't it give them pause?


There is something seriously wrong with our society when a pack of children cull from their midst the most vulnerable and fragile of their group -- a physically disabled child -- and badger him to death. This is the work of animals, not human beings. I fear for the future of our race.


For the people he has left behind, there is no "new normal." There is only a hole that cannot and will not be filled. I am left to pray only that he is in a better place. I pray that he is happy, and at peace.


I love my son with all my heart, and will continue to love him until the day I die. We needed him as much as, or more than, he needed us. We aren't complete without him. This is the painful result of suicide.


Benjamin Michael Roman Tobias, July 30, 1996 to August 7, 2010. Rest in Peace, Sweetheart. We will never forget you.


Love, Mom

From Adrian: I originally came in contact with Ben through his parents, who called me up here in Canada. The interesting thing is that I only spoke to Ben once, a few weeks before his suicide. There was a hope that I could connect him up to my prosthetist at Holland Bloorview to see if we could optimize an adaptation for his violin device, which he had begun using recently. He sounded like a pretty happy kid on the phone, and one who was on the cusp of doing some very special things in his life. There is always a peculiar connection people with disabilities share, and I felt an immediate connection with this young man.

In particular, I was hoping that the violin, and music in general, would become a special part of his life, as it was in mine. Looking back, it was music that helped me survive elementary school bullying, as it was not only an outlet to my emotions, but a way of communicating with my peers on an equal footing.

A few weeks went by, and I was curious if Ben had made any progress, and was about to message him on Facebook, when his father wrote to me about the loss of his son. It was a shock, I remember being particularly emotional. That brief connection we had on the phone was sacred: I feel that every amputee is like an extended brother or sister, as we not only share our struggles, but our hopes as well.

I knew I wanted to do something special for him, although I had no clue about his life and story. It was happenstance that Schindler's List was the perfect choice, as I found out after posting the recording that Ben's family was Jewish, and it was one of their favourite songs. Secondly, the Holocaust is, in a sense, bullying taken to a tragic extreme. The same ignorance that killed seven million Jews was the same ignorance that killed Ben. The piece is an elegy to those who have been lost too soon, and a reminder of the pain that these victims had to endure. It is the most meaningful recording I've played thus far in my career, and I'm happy to do my best to make sure Ben's story reaches as many people as possible.

Beyond that, Ben is an inspiration for my life in general, as he is one of the reasons I'm applying for grad school in education over the coming months. It is sometimes not the children's fault that bullying becomes prevalent in schoolyards. The onus remains on parents and educators to ensure that we send strong messages about social justice and inclusion. These changes have to be systemic, rather than within individual classrooms, and I believe that we can do better.

Ben, dear brother, you are not alone, and for those who are going through similar challenges in life: it gets better!

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