Med students put themselves in the picture

Last week I met with an academic who uses comics to build empathy in medical students.

Her name is Shelley Wall and she's illustrator in residence in the medical school at the University of Toronto.

She drew the picture above to better understand her husband's experience of having early-onset Parkinson's disease. It shows the way he adapts his clothes to deal with problems with balance, movement and pain. For example, he wears knee pads to combat frequent falls and boots that help prevent foot cramps. 

When Shelley presented this series at a conference on comics and medicine, people in the audience noted that it was apt that she, as caregiver, appeared in the margins. "There were people in the audience who were caregivers and they said 'We don't often see our story told. The caregiver is, literally, marginalized.'"

Shelley, who's an assistant professor in U of T's biomedical communications, uses comics in a five-week seminar for medical students. "I choose snippets of graphic novels that relate to a scene of a clinical encounter between a doctor and patient," she says. "I get my students to do thought balloons for the other characters. So if the piece is about a doctor's perspective, they come up with what the patient or family is thinking."

Another exercise involves students telling a story about a health encounter or ethical dilemma by drawing three panels of stick figures. After they produce their narrative, they need to go back and redraw it from a different point of view. "It's a way of manipulating stories from different angles," Shelley says.

"As a result of going into the head of someone living through an experience and trying to personalize an event, they come to insights that hadn't occurred to them."

Students are often surprised to discover that each patient has a unique story. "One student said: 'We're going through these checklists to come up with a diagnosis  but every patient has a completely different story and interpretation of what's going on.' That was such a revelation to her."

Shelley says that images are a powerful way to convey health-care experiences. "The reader puts his or her own self and feelings into the image, and there's so much interpretation involved."

When drawing illustrations students need to pay attention to details they might not otherwise. "When you draw someone you really see them in their individuality in a way that you don't if you're just looking at them. You notice things you don't notice if you're not trying to set it down visually."

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How Teddy 'opened' his family

Softening is an exquisite film by Kelly O'Brien, documenting life with her son Teddy, now 6, who was born with brain damage and a grim prognosis. It's a candid story about a mother's love and loss, a sister's magical bond, a father's joy and dedication and a little boy's experience of the world, moment by moment. It premiered at Toronto's Hot Docs film festival in April. Teddy and sister Emma appear above.

Here Megan Jones interviews the filmmaker Kelly O'Brien.

BLOOM: When did you decide to make the film?

Kelly O'Brien: Before I had kids I was a television producer and I made diary films on the side as a hobby. And then when Teddy was born I had to stop working. But I had an old video camera kicking around. And so I took little movies of what was happening but I never really thought they would become anything.

I knew when Teddy was born that it was the stuff of drama. I knew that if I could tell the story it would be something that people were interested in. But I was in too much pain to be able to figure out how to do that. I guess when Teddy was three, I applied to school and I went back and did my master’s in fine art at York. And that’s how I really made the film. I needed people to tell me that it was important to make the film because it was a really hard film to make. And I don’t think I could have made it outside of that.

I always wanted to shed a different light on disability from a very personal perspective. But I needed other people’s help to get to that place, and feel like it was something I was able to do. And I also needed to have enough distance from the initial few years after Teddy was born to be able to have the space to make it.

BLOOM: What was the main catalyst for making the film?

Kelly O'Brien: I read Joan Didion’s book The Year of Magical Thinking. She wrote about the death of her husband, and she said that she wrote that memoir as a way of trying to make sense of what happened. And I guess when I heard that I thought that I could use this film as a way of making sense of what happened to me, to Teddy, to our family.

BLOOM: In the film you say that you couldn't look at pictures you'd taken of Teddy. How did you move from that to making an entire film? 

Kelly O'Brien: It was a really slow process. You can kind of slowly remember what happened. And then you look at images one by one and year by year and they kind of come back to you.

I think there are a lot of factors, I think time was one of them. I had dealt with that initial sadness of ‘This isn’t the child that I thought I was gonna have.’ To coming to a better place with it all. I think that made it easier to look at the pictures.

But it wasn’t really until watching the images—there’s a scene where Teddy’s sitting in his high chair, and he’s playing with a toy, and at the end I say ‘Oh, he looks so happy!’ I didn’t remember that footage.

When I saw it a few years after I had taken it, I was taken that I had that perspective back then, that I was able to see that happiness in those moments. But it’s a slow process. I still don’t really want to watch the film. It’s not easy to watch at times. Also, I say in the film, a lot of it just had to do with getting to know Teddy better, and appreciating him for who he was.

BLOOM: Did making the film change your relationship to Teddy?

I think it allowed our family to make something together. I miss that, that connection. We would spend time together and it felt like we were doing something creative and fun as a family. And it was a special time that Teddy and I did have where it felt like I wasn’t just being sad, or taking care of him. We could do this thing together. So yeah, there was a bond, a closeness that we have that we discovered in the making of it.

BLOOM: Has your thinking about disability or about parenting changed?

Kelly O'Brien: I think the film maps a journey. I think I would have come to it anyways. But I think it’s complicated. There’re so many different emotions that you have around having a son like Teddy. And they range from grief to joy.

One of the important things for me with the film is that I’m not really one of those parents of a kid with special needs that thinks it’s a gift from God or a blessing in disguise. I don’t believe that. I think you have to make it joyful. I don’t think it’s like fate or something like that. I wanted that to be in the film. I wanted to be honest. And I also wanted to show that honesty with Emma. I also wanted to talk about what it’s like to be a sibling of a child with special needs.

BLOOM: Why was it important for you to make the film for yourself rather than hand your story off to someone else?

Kelly O'Brien: I didn’t leave my house for two years after Teddy was born. I was devastated. I didn’t do anything. So initially it was a way for me to get back into the world and have some connection to what I used to do.

Now I feel more like I’m on a political mission, to tell you the truth. If I can make a child like Teddy more human to people and so they see the complexity of our situation, but also the beauty of it, then I feel like that will be worthwhile.

BLOOM: In light of that, is there anything in particular you’re hoping audiences will take away from the film?

Kelly O'Brien: I hope that it makes people think differently about family and about different ways of connecting. That you can find love and compassion for—it sounds so cliché—but for people that are different than you.

BLOOM: The documentary is so personal. Were you ever afraid of what people would think or say about the film?

Kelly O'Brien: Jeanette Winterson wrote a biography called Why be Happy When You Can Be Normal? And she talks about writing the story that she could live with. The real story was too painful. I think I did that. This isn’t the whole story of what we went through. They’re just fragments of our life. Some insight of what it’s like to have a kid like Teddy.

I think I worry that I maybe presented a prettier picture. I was always afraid that I couldn’t say what I wanted to say. I feel like I’ve been through so much though that I honestly don’t care if people don’t like it, or don’t agree with what I have to say. I just wanted to be as honest as I could to what I was experiencing and what our family was experiencing.

BLOOM: What were the things that got left out?

Kelly O'Brien: A lot of my sadness wasn’t in the film. There were two years of intense sadness. I felt like that wasn’t fair to Teddy. I didn’t want to portray what happened as a tragedy. That wouldn’t have been an interesting film. Who wants to hear about a mother complaining and whining?

I knew that I had to get to a better place before I made the film. I also knew that Emma and Terence had very different relationships with Teddy. And all of a sudden that donned on me, that that would be really important. Initially this film was just going to be about me and Teddy and then I thought that would be too narrow.

The other thing that got left out was all of Teddy’s doctors' appointments. I couldn’t film that, it was hard enough for me just to be at those appointments. I couldn’t do it. So I chose just to film Teddy at home, and then it became clear that it would just be this really small, intimate film about Teddy and our family.

When I was pregnant with Willow, I was just beside myself with worry over that pregnancy, and I was trying to edit the film. And I would listen to some of the messages friends had left after Teddy was born and I just couldn’t do it. I put the film on hold until she was born, and then was able to work on it again when that worry had subsided.

BLOOM: What were the biggest challenges of the filmmaking process?

Kelly O'Brien: There were so many challenges. I can’t even tell you. Just having to take the pictures, to figure out what you want to say about them, to get to a place where you’re actually emotionally stable enough to do it. There were moments when I was editing it together that I was just sobbing.

So I think I just needed to get to a place where I was okay, and I could tell the story in a way that was fair to Teddy. Because he can’t speak for himself. I think that was a big challenge. How do I talk about him when he can’t talk about himself? And how do I do that in a way that’s ethically fair? How do I represent him honestly? And then how do I talk about the difficulties of that in a way that still maintains that fairness? Just coming to terms with my own grief and getting to a place where I could think about those bigger questions was a challenge.

The joy was when I could actually look at some of those pictures of Teddy and see the beauty in them. There was a lot of beauty there. And then seeing footage of Teddy with my youngest daughter when she was born—how sweet that was—and being able to celebrate that. I’m glad I have those images, as opposed to before when I couldn’t look at them. Being able to have that memory bank is important.

The beauty of it was really important to me. Even now, you take Teddy into the world and people gawk and stare and I can’t bear it. You just relive what happened, the story, over and over again when people stare at you like that. I felt like if I could make it beautiful, then people wouldn’t turn their heads, or they wouldn’t have so much fear. They would be able to see the situation, see Teddy for who he is.

The other challenge for making the movie was that when Teddy was born there was no great overcoming of obstacles. He actually ended up with a bit of a worse diagnosis than the one we were given when he was born. In documentary you’re supposed to have this huge transformation and a happy ending. And I knew that wasn’t the arc of our lives. I was conscious when I was telling our story that it wasn’t a sort of ‘TV movie of the week’ story about disability.

BLOOM: Could you explain the significance of the title of the movie?

Kelly O'Brien: I was visiting my brother in Ottawa, and there was a Louise Bourgeois exhibit at the gallery. There was a quote on the wall about how she was softened by her husband and her children. I just kept reading the quote over and over. I thought ‘That’s what I’m going to call my film.’

I feel like that’s what happened to me. What happens initially when you’re dealing with grief is you become angry and bitter—you become quite hard. I was not a nice person to be around. But there’s also this incredible vulnerability, this rawness because you’re so emotionally opened up. And that’s a beautiful place to be in. You can’t live your life like that. But to be open and kind hearted and open and soft is worth it. And I think having Teddy in your life—he does that.

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When brain differences aren't deficits

Neurodiversity suggests that there are benefits to brains that think differently.

In this recent piece in WIRED, Steve Silberman looks at the strengths and skills that result from the unique brain wiring of people with autism, ADHD and dyslexia.

"One way to understand neurodiversity is to remember that just because a PC is not running Windows doesn't mean that it's broken," Silberman writes. "Not all the features of atypical human operating systems are bugs. We owe any of the wonders of modern life to innovators who were brilliant in non-neurotypical ways. Herman Hollerith, who helped launch the age of computing by inventing a machine to tabulate and sort punch cards, once leaped out of a school window to escape his spelling lessons because he was dyslexic."

I tweeted Silberman to ask whether he includes intellectual disability in the neurodiversity fold. He tweeted back that he did, but hadn't written specifically about it yet. Did I have any pointers?

I've often felt that my son Ben's way of thinking conveys certain benefits.

He's real, for example, because he doesn't wear the deceptive social mask we 'neurotypicals' don to project an image of invulnerability, impress others and trick ourselves.

Ben is also able to live in the moment and he's able to slow down a moment to appreciate it.

He also doesn't wish to be someone else, which I think is very rare in our world. I remember a school assignment I did with him and in answer to: "If you could be anyone in the world, who would you be?" his no-brainer answer was: "Me."

What do you think are positives that come from intellectual disability?

I plan to write to Silberman more about this and would love to include your ideas. Thanks!

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Making sense of autism risks

After my son was born with a random genetic change that my husband and I don't carry, I was told by geneticists that if I was to get pregnant again, the chance of having a second child with this condition was less than 1 per cent.

The genetics counsellor described those odds this way: "You have EVERY chance of having a perfect baby next time!"

I was given the green light for more kids.

So I was surprised to read a story about a Swedish study in the New York Times Motherlode column yesterday that suggests pregnant women shouldn't take antidepressants because they may increase the risk of autism without intellectual disability in a child by .6 per cent.

The baseline risk for having a child with autism is about 1.1 per cent (1 in 88 children), so this would bring the overall risk to under 2 per cent.

In other words, using antidepressants while pregnant may increase the risk of having a child with autism without intellectual disability by less than 1 per cent—the same odds I was given of having a second child with a rare, spontaneous genetic change.

The same risk deemed by my geneticists to be so small that it shouldn't be a factor in my decision to have more children.

While I had a greater than 99 per cent chance of having a second healthy baby without my son's genetic condition, this Swedish study suggests women using antidepressants have a greater than 98 per cent chance of having a healthy baby without autism.

The hitch in the study was that a causal link wasn't found between antidepressant use and the .6 per cent increase in risk of having a child with autism. The researchers said the tiny increase in risk could be caused by the antidepressants—or it could be caused by the depression itself.

Kind of a big question mark as to what the study means!

Yet the headline on the Motherlode piece reads Study Links Autism with Antidepressant Use During Pregnancy and the story doesn't mention the size of the possible increase in risk (.6 per cent).

Many readers commenting on the article imply that antidepressants have been found to be a major risk factor for autism.

They haven't!

According to the March of Dimes, a woman has a 3 per cent chance of having a child with a birth defect.

This means that the risk of having a child with any birth defect when the mom doesn't use antidepressants is higher than the increased risk for autism suggested by antidepressant use in this study.

The Swedish study "is very important in highlighting which biological pathways may be involved in how autism develops, but the information isn't translatable to counselling an individual woman who wants to have a baby because the additional risk is too small," says Evdokia Anagnostou, a child neurologist who leads a clinical research program in autism at Holland Bloorview.

"The study is helpful in explaining the increase in autism rates in a huge population, but it doesn't identify antidepressant use as a major risk factor in individual cases," Evdokia says.

She likens it to a study last year that found that men in their 40s are more likely than those in their 20s to have a child with autism, but the overall risk was still low, at 2 per cent. Does this mean mean older men should stop having children?

“If someone asks me ‘Do you think I should not have a baby because I’m 40?’ I would say you absolutely should have a baby. The majority of babies born to 40-year-olds are perfectly healthy.”

Evdokia emphasized that autism is “a multi-factorial disease that can’t be prevented at this point. Paternal age can now be seen as one of many contributors to risk"—but father's age and antidepressant use in moms don't explain the majority of risk.

“There are many, many reasons why you may end up with a child with autism and in these cases the child gets this extra little hit. But most of the time a child needs to have many hits to get autism.”

Other factors that increase risk include a parent's genetic makeup, such as having a sibling with autism or family members with autoimmune or mood disorders; the fetal environment, including infections during pregnancy and exposure to fertility and other drugs; and possibly some environmental toxins.

When considering treatment of pregnant women with depression, it's important to remember that untreated depression can have negative impacts on children. In this 2013 study, children of depressed moms who weren't treated had behavioural problems in early childhood, while those whose moms took antidepressants didn't.

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Snap

Today we were having our regular Saturday lunch at a cafe near our home that makes great fresh food.

We'd just started eating when I heard one of my daughters say: "Stop looking at him!" "Why are you looking at him?" 

"What's your problem?"

It was noisy in the restaurant, so I didn't know if anyone else could hear her.

The person she was speaking to was sitting behind me.

"Is someone looking at Ben?" I asked.

"Yes," she said, eyeballing someone behind me and shaking her head. 

"He won't look away."

I turned around and saw an outdoorsy guy in his late 20s, someone who probably kayaks and shops at MEC.

I turned back.

"Tell him to take a picture next time," I said loudly.

We smiled and resumed eating.

I'm amazed sometimes by how ignorant adults can be, how rude. And it's one thing for us to deal with stigma. But it makes me sad and angry when it touches my kids.

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Selective abortion: A choice or a social expectation?

When I was pregnant with my second child I had an amniocentesis—not because I wanted one or knew how I would act on the information—but because I feared people would judge me if my second child was born with disabilities.

I feared people would say I'd chosen to have a child with disability, rather than that I'd chosen not to abort.

The testing was recommended because my first child had a random genetic condition. "I understand why you'd want to do everything in your power to prevent having a second abnormal baby," the obstetrician in the testing clinic said dryly.

I remained silent, not wishing to discuss my views on disability prevention or my son. The amnio came back normal and I didn't have to wrestle with my views on prenatal testing and abortion.

A week ago Andrew Solomon had an interesting piece in The New Yorker called Medical Progress, Social Progress, and Legal Regression.

While arguing against North Dakota's new laws that ban abortions for conditions like Down syndrome or spina bifida, he questions how informed decisions are when a woman doesn't have information about families raising children with the same condition her fetus has.

"Women often terminate a pregnancy without knowing what life would be like with and for an anomalous child," he writes. "It is worth publicizing the satisfaction that the experience may entail, so that the pro-choice movement becomes the pro-informed-choice movement."

Parents-to-be often "confuse how it feels to lose an ability (to be suddenly bereft of hearing) with how it feels to live healthily with a variant body (to be deaf all your life)," he writes. "Further, they confuse their own discomfort with their child’s."

Solomon points to a fascinating study that shows how people judge women who carry a baby with an identified disability to term or refuse prenatal testing. 

The survey asked 281 staff at a Canadian university and 341 Canadian doctors who work in obstetrics to rate three scenarios in which a woman's child is born with a disability. The first woman chose not to have testing, against the advice of her doctor. The second chose to continue her pregnancy after testing identified a disability. The third was not offered testing by her doctor.

Participants were asked to rate how responsible each woman was for the disabled child and how much to blame. They also had to score how much each woman deserved sympathy, and how deserving each was of social services and financial aid to help her care for the child.

"Numerous examinations of attributions for outcomes have concluded that individuals are held more to blame for a negative event when it is perceived as being under their control or preventable," the researcher notes.

Both the university community and the doctors rated the woman who chose not to abort her disabled fetus and the woman who refused prenatal testing as more responsible, more to blame, less deserving of sympathy, and less deserving of social and financial support for their child's care than the woman who wasn't offered testing.

"This examination is of pragmatic relevance because of a growing sentiment that prenatal testing can and should be used to meet public economic goals by reducing the financial burden that disability places on the medical and social welfare systems, and that women who do not use it to prevent the birth of a disabled child should be held financially or legally accountable."

The key phrase here is "prevent the birth of a disabled child." Abortion doesn't prevent disability. It prevents the birth of a child who has a disability. They are two quite different things. 

I was surprised to see that this study was 10 years old. I think public opinion about women who don't abort for fetal disability has hardened since then.

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'I love the boy to pieces and I'm grief-stricken'

Here's a sneak peek at part of an interview we're running in the summer issue of BLOOM. It's with acclaimed British director Stephen Unwin.

Unwin is directing Peter Nichols’ A Day in the Death of Joe Egg, a 1967 comedy about parenting a child with profound disabilities. The play, at the Liverpool Playhouse and then the Rose Theatre in London, strikes close to home because Stephen’s son Joey, 16 (above left, with sister Bea), has severe epilepsy, an intellectual disability, and no speech.

BLOOM: What is A Day in the Death of Joe Egg about?

Stephen Unwin: It’s a brilliant black comedy about how a married couple deals with being parents of a child who is profoundly disabled—both physically and intellectually.

Little Josephine is 11 and has cerebral palsy, sits in a wheelchair, has no speech, very limited capacity and suffers from epilepsy. It’s a weird comedy, which was such a hit in the 1960s, that describes the full range of emotions of parents and families of profoundly disabled children.

It ranges from jokes to despair to hard work to fantasy, to the parents having differences of views, to guilt, and the perspectives of other people. The grandmother goes around saying: ‘Wouldn’t she be lovely if she was running about?’ And somehow Peter Nichols makes sense of this extraordinary comedy.

It’s not funny in a simplistic way, but in a way that makes you howl. One of the things I like about the play is that it’s not moralistically or idealistically saying ‘We are all so happy to have these disabled children.’ Nor is it saying ‘It’s only a tragedy.’ The mother gains meaning through being Joe’s mother.

BLOOM: I’ve used black humour to cope with extreme situations. But will an audience with no experience with disability understand the humour in the same way you or I would?

Stephen Unwin: None of the actors have experience parenting disabled kids, so one of the things I had to do is show them how the child is just a child.

People tend to have two responses to serious disability: one is terror and the other is optimistic reverence, and you and I know that neither is helpful.

The only answer is reality: ‘Yea, this is what the kid is like, and this is what caring is like.’ It’s nothing to be scared about, but I don’t buy the idea that ‘This is a blessing from God.’ That’s bullshit. Nor is it a punishment. I think it’s just part of reality and the only answer is acknowledging the reality.

BLOOM: What kind of things did you explain to the actors about parenting disabled children?

Stephen Unwin: The child in the play goes to a day centre and the mom discovers that they haven’t changed her diaper all day. I was trying to explain what that’s like to the actress who plays the mom. She has young children, she knows what it’s like to change nappies on a one-year-old, but working out whether an 11-year-old has wet themselves? It’s quite hard physical work. But it’s what you do every day of your life and you’re not squeamish about it.

I’d explain what it’s like to give epilepsy medicine to a child who’s shaking, and you go ‘Shit, it’s gone all over the place,’ and you start again.

I try to show people what they take for granted. For example, when Joe has a seizure in the play they would all jump up to deal with it. No, I said, it’s not like that. This has been happening every day for 11 years, so it’s a different rhythm.

I remind actors of the reality of the situation because I have a parallel experience. But it’s not about my Joey. My Joey runs around and bounces and in many ways is healthy. It’s about Peter Nichols’ child with profound cerebral palsy, who died.

BLOOM: In The Guardian you wrote about your son’s 16th birthday—cake, candles, presents and early to bed—which isn’t what you’d expect with a typical teenager. But do you think we project our own sorrow on to our kids—our own wish that life was different for them—when from their perspective, they’re experiencing something in a rich way?

Stephen Unwin: I think that’s right. But I don’t want to have my grief invalidated by anybody.

I think there’s a sort of pressure on parents of disabled kids to be marvellous, and I howl about it sometimes. I find it really fucking hard. I was brought up with language. I had a really old-fashioned English classical education. I’m over-educated, language is everything for me and I’m dealing with a son who has no speech.

I love the boy to pieces and I’m grief stricken and that’s not a contradiction, that’s real. Both are true and I feel really passionately that parents have to be allowed to have that range of emotions. This is the ultimate rollercoaster.

Sometimes it’s absolute bliss and sometimes I feel a great big hole inside, I feel hollow inside.

BLOOM: What have you learned from Joey’s lack of speech?

Stephen Unwin: That there’s something beyond words. But that to me is a very challenging thing to have to understand because I write books and I direct Shakespeare and I’m completely classical about language.

If I had a son who couldn’t play football or fix a car, I’d say: ‘Oh well, I can’t play football, I can’t do any of that manly stuff.’ I can write and I read and read and read and I work on language all the time. So seeing that there is communication beyond language has been the biggest journey for me, and it’s about as far away as what I was programmed to do. It’s a difficult place to get to.

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