Tuesday, December 27, 2011

'It's not what you see. But how you see it'

















This is a condensed version of an interview that appears in the January issue of BLOOM magazine. I don't think I've spoken to anyone who's made me stop and think the way Dr. BJ Miller (above) does. Louise

Dr. BJ Miller was a successful Princeton sophomore when he and his buddies decided, on a lark, to climb atop a parked commuter train; the lark turned dark when the train's electric voltage arced to his metal wristwatch, resulting in the loss of his legs below the knees and part of his left arm. As a triple amputee he went on to graduate and become a palliative-care doctor. He’s now executive director of the Zen Hospice Project in San Francisco. "I learned so much, particularly about perspective,” he says. “It's not what you see but how you see it."

BLOOM: It sounds like you were someone who had everything – at least on the outside – before your accident. How did becoming an amputee change you?

Dr. BJ Miller: I was well aware that I was very fortunate in many ways when I was younger and while that was good, it was also tough. Whenever I worked hard or was proud of something, it was discounted. I couldn’t take any credit for any of my achievements – or my pain. It was a bit of a funny relief when I became an amputee because I finally had an external source of suffering. Finally people stopped treating me like the world had just been handed to me. It gave me access to humanity in a different way and that helped me. It didn’t feel this way every minute, but I worked towards it feeling like a source of good fortune. Of course it was also a source of a great deal of pain and anxiety too. I’ve had the full gamut of emotions but on balance, over the years, more good than bad has come from it.

BLOOM: What was the greatest challenge for you?

Dr. BJ Miller: In a nutshell, how to see things differently. By pulling me out of my anything-approaching ‘normal’ frame of reference it really helped me upend that endless cycle we humans engage in of constantly comparing ourselves with those around us. Am I smart enough, rich enough, skinny enough? Compared to what? That’s the question I got to open up. I was given a way to let myself off that hook and be my own frame of reference. That was extremely liberating for me and it gave me a way into self-actualization that was wonderful.

It’s still a great challenge to keep it up – to still be my own boss, to be my own gauge. As much as that’s the greatest gift, it remains the greatest challenge. A critical subtext for disability and for my palliative work comes to this issue of following one’s own gut and reconciling what the external world wants and thinks and needs from you with being true to yourself. There isn’t a pat answer to that.

When I talk to school kids they’ll say “Don’t you miss having two hands?” and I’ll invariably say “Yea, I do, but don’t you miss having three hands?” Because for me personally it’s as ludicrous to go around thinking about having two hands as it is for them to think about having three. “I don’t sit around missing them anymore than you sit around missing three,” I’ll say. This frame-of-reference issue is a powerful thing.

BLOOM: How hard was it to relearn how to do things as an amputee?

Dr. BJ Miller: It took five years of hard work before I felt truly in my body again and coordinated in a new way. I think the hardest thing remains the arm. Having two hands is way easier than one, and the hands are so important. Sure, I miss my feet, but they’re just like a platform. They’re easy to duplicate. I can get around on my prosthetic legs.

BLOOM: What did you learn about having a visible difference in our culture?

Dr. BJ Miller: I’ve learned a lot because I was suddenly snapped into being part of a minority, of being ‘the other.’ All of a sudden I embodied something that most people fear. I was very aware of this sort of repulsion that people felt. It was hard to see the terror on kids’ faces, or parents pulling their kids away from me. Or if I surprised someone, and I was wearing shorts, and they were horrified. Sometimes it took the guise of pity, which I knew from my mom was the enemy. Sometimes the pity felt nice because old women would come up and give me $20 – even when I was in medical school! It definitely was hard and I had to really concentrate on sticking my chin out when I walked out of my bedroom to face the day.

The fascinating part was that about two years after the accident I noticed people’s reactions got a little better. And after five years I noticed a big difference. I must have carried myself differently. At first, I’d drive like a mad man and get pulled over by the cops and they’d take one look at me and let me go. Or if I was flying, I’d be bumped up to first class every time and they’d sneak bottles of wine into my bag. But then that just stopped. Did I reach a new level that I didn’t trip up these responses in others or had society evolved?

BLOOM: How did you cope in the early days?

Dr. BJ Miller: I was full of pain and fear. But I can’t tell you how important it was having grown up with a disabled mother. For much of my mother’s life she used an electric wheelchair and being in the world with her, I vicariously learned a ton of the things we’re talking about. As a child I was sensitive and a little worried – ‘Gosh, I’m lucky in all these ways and could I even handle it if I had a disability?’

So I was coming from a different place when I became an amputee than most people. I loved my mother so much and was aware of the way the world treated her – and yet I didn’t want to collapse into hating life. These issues had been rumbling around in my head for a while. I didn’t wake up on day one and see my situation as a great challenge. But pretty soon I was aware that it was that – a great challenge. I knew that and I had to live it.

BLOOM: Do you have a personal philosophy that helps you see things with perspective?

Dr. BJ Miller: I’ve only read The Serenity Prayer a couple of times but I’d have to say that it registers with me. Teasing out what you can control from what you can’t control – I can’t think of a better skill to acquire as a human being than that. Because whether or not you qualify as disabled, life is full of pain and difficulty. Even if you have all the perfect circumstances, at some point Mother Nature will insist upon certain things from you, like your own death. You can’t change the things you’re looking at in so many ways, but if you’re going to use your energy, put it into how you see.

BLOOM: Why did you become a palliative-care specialist?

BJ Miller: Because all of the things I’ve learned to get through my day seem to have broader relevance for people dealing with various themes of suffering. Suffering is a unifying human bond and it comes in many stripes and colours. And even if you have a perfect life you still have to say goodbye to it at some point. I love finding and working from the common denominator – and suffering and mortality are the most thorough.

After med school I thought I would go into rehab medicine but when I did a rotation in that I was turned off. It seemed to be a very mechanical field, while a lot of what we’re talking about has to do with the transformational powers of coping with disability – that there’s this raw material for transformation and growth and interest.

The goal in rehab seemed to be to get back to where you were before the injury and that to me was fundamentally flawed. Generally it’s not possible, but more importantly, why undermine and cut yourself off from all the beautiful stuff that comes your way when you embrace differences? I’m sure there’s a balance to be struck with therapy, but overall, celebrating differences – especially the ones you can’t change – is a better way through, if you ask me.

Photo above by Brant Ward ran with a feature about BJ in the San Francisco Chronicle.

Thursday, December 15, 2011

Happy holidays!














Dear readers:

I am off to England tomorrow to a small town not far from where this robin had its picture taken.

I had booked this ticket to take care of my uncle in hospital there, but sadly he died last week. So now I will be staying at his home in the beautiful Suffolk countryside. The robin is appropriate because my uncle always sent us Christmas cards adorned with robins.

Something I've noticed recently on the BLOOM blog: our page counts go up when we post videos (so you like watching them), but the comments go down. Thoughts? Is there a reason people don't like commenting on videos?

I won't have access to blogger until after Christmas. So I wish you all very happy holidays and am passing along a few links. Louise xo

Letting Ruth go: My daughter's wheelchair was her legs, her computer her voice

Asperger's syndrome inspires homeless woman's comic book strip

Official trailer: Rollin' with Zach

A drug that wakes the near dead

Tuesday, December 13, 2011

Focus on deficits masks a child's beauty

A highlight of the ethics conference at Montreal Children's Hospital was a parent panel. Nathalie Bouchard, above, was one of those parents. Here she talks about how a medical focus on deficits harms the relationship between parent and child. Nathalie was interviewed in a playroom at the hospital. I'm happy to report that shortly after this interview a tiny dog was brought in for 'pet therapy' and there were no more tears! Thank you Nathalie!

Still kickin' at Kumon

Monday, December 12, 2011

Advocacy in an unfamiliar culture

Getting your child with disabilities services can be a challenge. But imagine going to bat for your child in a language you don't understand? And what if you didn't feel comfortable talking openly about your child's disability? These are just some of the barriers facing parents in the Canadian Somali community says Shukri Farah (above) in another BLOOM clip.

Thursday, December 8, 2011

This and that

Over 70 per cent of 1,148 respondents to an online survey by the UK's Contact a Family said they've experienced mental-health problems such as anxiety, depression and breakdown as a result of the isolation they experience raising a child with a disability. According to Forgotten Families, British parents report "a lack of social interaction due to difficulties working and not having the time or money to do family activities others take for granted; a fear of how people will react when they go out with their child; and a feeling of being alone, even when surrounded by people, because no one else shares their experience."

I heard four-time Canadian Olympian rower Silken Laumann interviewed on CBC about raising a daughter with autism a couple of weeks ago. Silken lives with her partner GoodLife founder and CEO David Patchell-Evans (known as Patch). They each have two children, and Patch's daughter Kilee, 15, has severe autism and requires 24-hour care. This is a beautiful blog Silken wrote about the impact of attending a dance with Kilee and other youth with disabilities:

Just start dancing
These teens and adults live everyday in a world where they don’t “fit in” not because of anything that they are doing, but because of our own discomfort with looking different, acting different, speaking too loudly. These young people have the real gift, the gift of expressing themselves authentically, without a self-censoring process that sifts out so much of the joy. It is we who have the disability, the inability to express ourselves authentically in our life, the attachment to fitting in that is so near and deep inside us that we rarely can let go of it.

If your child has seizures and developmental disability, don't miss this webinar Dec. 13 moderated by parent and BLOOM contributor Elizabeth Aquino and hosted by the National Center for Project Access of the Epilepsy Foundation.

Webinar: Communicating with Your Developmentally Disabled Child During Adolescence and Puberty

Costs, quality-of-life ratings put complex kids' care at risk

Pressure to contain health costs over the next decade will put the care of a small group of children with complex medical needs and severe disabilities at risk, says Dr. Chris Feudtner, pediatrician and director of the department of medical ethics at the Children’s Hospital of Philadelphia.

“About 20 per cent of the pediatric population generates about 80 per cent of our health-care bill,” said Dr. Feudtner at a Grand Rounds on ethics in the care of children with disabilities at Montreal Children’s Hospital last week.

“The rallying cry is that we need to cut down on the use of what are called marginal therapies – on drugs, therapies and procedures that cost a tremendous amount of money but offer little benefit. It’s a short manoeuvre from that mindset to take certain people with certain conditions and marginalize them.”

Dr. Feudtner showed a photo of one of his patients – a baby who uses a ventilator – and said: “We don’t want to end up having a bureaucrat 1,000 miles away saying ‘this is marginal medicine and we need to cut it out.’”

In analyzing the costs and benefits of treatments, economists measure quality-of-life years gained or lost as a result, he said. These analyses are typically based on models that assume low quality of life for people with chronic illness and disability.

Studies of self-reported satisfaction with life in people with disabilities, however, show a different picture.

A large European study of children with cerebral palsy found they rated their quality of life on par with their peers.

Research shows that patients rate their happiness and satisfaction higher than their families do, while their families rate it higher than doctors and nurses do. And the longer a person has a disability, the happier they are with their life. One to two years after a spinal-cord injury, people tend to rate their life as good as, or better, than before.

“Who judges quality of life in people with disabilities?” Dr. Feudtner asked. Should it be a panel of doctors, a random sample of the population who haven’t experienced disability or a group of patients or parents who understand firsthand what it means to live with the condition?

“Our current analyses of quality of life don’t account for the amazing capacity of people to adapt and grow, to handle difficulty, and to say ‘my life is good,’ without changing the difficulty.”

That’s because ratings are determined by able-bodied people who try to predict the impact of disability on everyday life.

Current analyses of quality of life don’t factor in the cost or benefit of a drug or treatment on people connected to the patient, such as parents, siblings and grandparents.

“Is medicine a one-on-one proposition or do we look at it from a societal perspective that includes people connected to the patient?” Dr. Feudtner asked. “If we cut respite care and a parent has to stay at home, do we count their lost wages as costs? If my child’s quality of life growing up makes me happier, do we count that? What are the ancillary benefits of having a child do better? There are instruments to measure family stress and depression. If a family receives social services, does their level of anxiety and depression drop?

“Right now a huge amount of the costs of raising children with severe disabilities is being born by the families.”

In a study of children receiving palliative care, Dr. Feudtner found nearly half were facing substantial financial strain. Those who reported the direst finances had children whose health had declined most steeply.

“It’s hard to figure out how to capture these costs,” he said. “But to disregard them means that you really aren’t operating from a societal perspective.”

With unsustainable health-care costs projected over the next decade, “ethical pronouncements about ‘it’s the right thing to do for children’ will not have the same sway they had in the past,” Dr. Feudtner said. “We have to marry the ability to speak to deep ethical values and go head to head with accountants.”

Joey, above, is a child with complex medical needs.

Monday, December 5, 2011

The demonization of the disabled












There is a climate of hostility towards people for whom life is already difficult and it is being fostered by politicians and journalists, writes Observer columnist Ian Birrell.

The demonization of the disabled is a chilling sign of the times

Swimming lessons






















In the 1970s there were no special swimming lessons for kids with disabilities in Edmonton. My brother loved the water, so my parents registered him for swimming lessons. The staff looked at him and said that the teacher wouldn't have him in the class unless a family member was there to help Leo. My parents looked at me. I knew they wanted me to say I would sign up for the same class, and be Leo's helper. I told them what they wanted to hear. This story is about why I never learned to swim.

Swimming lessons
By Sophia Isako Wong

I am afraid of the water. Clutching the side of the pool, I edge my way along, hoping the teacher won't notice me. All the other kids are in the middle of the pool; I am the only one who can't keep up.

"Come on, Sophia! Let go of the wall and kick your legs!"

I transfer one hand to the flutterboard, a thin slice of blue Styrofoam that doesn't support my weight sufficiently.

"You can do it! Both hands on the flutterboard, and kick your legs straight out!"

I take a deep breath and start kicking my legs. Maybe if I can get my legs going first, I'll be able to let go of the wall.

SPLASH!

Without looking, I know what has happened. My brother Leo has done it again: a big cannonball into the pool, gleefully creating a big noise and splashing all our classmates. The teacher calls my name. I wave my arm to show I've heard her.

"I'm coming." I pull myself out of the pool, drop the flutterboard, and make my way to my brother. Eyes shining, he watches me approach him with a huge smile on his face.

"Hey Sophie, did you see me? I made a big splash! That was fun!"

"I know, Leo. I saw you, and I heard you. Did the teacher ask you to do that?"

"No, it was my idea! I made a big splash!"

"Leo. Look at me. This is not play time. This is swimming-lesson time. Can you listen to the teacher, please? The other kids don't like it when you splash them."

He is crestfallen. "Oh."

I give him a big hug. "We'll play in the water after class, I promise. Can you do just swimming for now? Just until the end of class?"

"Oh.... ohhhhkay."

I point toward the teacher and look from his face to hers, until his eyes focus on her. I return to the edge of the pool. Now the kids are doing a different exercise and I've missed the instructions. Shivering, I grab my flutterboard, get back into the cold water, and watch them. I’m still afraid of the water.

Sophia Isako Wong is an associate professor of philosophy at Long Island University in Brooklyn, New York. Her brother Leo has Down syndrome. Here's what she said about the photo above: I don't have any photos of us in the pool, but here's one of us in the bath -- another activity in which I routinely supervised my brother while my parents were out of the room. I think our expressions show the way we feel about water.

'Burden' of complex kids not whole picture, ethicist says

I was privileged to interview Franco Carnevale at the ethics conference on children with disabilities at the Montreal Children's Hospital last week. Franco is a clinical ethicist who worked for a couple of decades as head nurse in the pediatric ICU at Montreal Children's. He's also a psychologist!

Here he talks about "an implicit understanding that (children with disabilities) don't count in the same way as other children" -- a bias found within the health system itself. To illustrate his point, he shares a research project to study families of children who live at home with ventilators. Franco admits that going into the study, he assumed they would be documenting primarily hardship and stress. But what he found was "a lot of the most stressful moments in life are intertwined with the things that matter the most." He titled the resulting paper: Daily Living With Distress AND Enrichment.

Do not miss this clip! Go directly to YouTube for a full-screen version. Louise

Friday, December 2, 2011

Does every child matter?

The results of 'Does Every Child Matter, Post-Blair?' were released today. The research project at Manchester Metropolitan University asked what life in England is like for disabled children age four to 16. Researchers spoke to disabled children, their parents/carers and professionals to ask about their lives from 2008-2011.

Here are a few findings I know will resonate with readers. Check out the report in detail (link above) to learn about the researchers' recommendations. Louise
  • disabled children sometimes sit outside 'mainstream' children's policy and 'mainstream' services including education, health, leisure and social care
  • families with disabled children are often isolated with little support in their communities
  • despite changes in legislation, disabled children are still excluded from a range of leisure activities. The biggest barrier to disabled children's access to leisure was the attitudes of other people. Physical and attitudinal barriers mean that many disabled children had no choice but to attend segregated leisure activities.
  • disabled children living with life-limiting conditions and their families are likely to experience isolation and poverty. Parents and carers are often excluded from support networks. The discrimination families face in life continues in death.
  • parents come under huge pressure to make their disabled children 'normal.' When families differ from the 'norm' this leads to exclusion -- children are excluded from friends, schools and leisure opportunities and parents are excluded from friendships and work
  • disabled children have often been excluded from arts for its own sake (their creativity is often thought about in terms of therapy)
  • parents are often asked to talk negatively about their disabled children in order to access services and support, whether in education, health, leisure or social care/benefits. Parents are asked repeatedly to talk about what their children can't do, as opposed to the support they require. Parents say this has a negative impact on their relationship with their child.
  • disabled children often have to deal with negative perceptions of their bodies, including being stared at or questioned about their bodies. Disabled children's bodies often cause emotional reactions in others because they serve as a reminder that none of our bodies are normal
  • when disabled children are viewed as 'vulnerable,' bullying is often accepted as inevitable. Often the bullying goes unnoticed by the adults who are sometimes also the perpetrators.

International disability day













Change your Facebook profile picture for the day December 3 to support the International Day of Persons with Disabilities. Use your own social network to raise awareness!

How?

1. Visit the Holland Bloorview fan page.
2. Right click on our profile picture and select "save target as" in the drop menu.
3. Save the image on your desk top.
4. Go to your Facebook page and change your picture.

Ask your friends to do the same!

A fate worse than death?















I attended a fascinating conference Wednesday at the Montreal Children's Hospital on ethics related to the care of children with disabilities.

One of the themes was cultural devaluing of children with disabilities – and how it can play out in decision-making about care, including whether to withdraw care from premature newborns with significant disability.

A neonatologist in the audience made the following comment.

“There is a feeling among my colleagues – an unspoken and probably unconscious bias – between physical and mental disability. Sometimes neonatologists think if you're not perfect mentally, you're better off dead. But when it comes to physical disability, they will go a long way with interventions.”

Neonatalogists care for newborns with complex, life-threatening problems related to prematurity, illness or congenital disability.

I think the stigma that intellectual disability is worse than physical disability is widespread, even within the disability community itself.

We can't know if what the doctor said about the pervasiveness of this attitude in neonatology is true. Perhaps she is ascribing her own bias to others. But it would certainly be shocking if specialists trained in the care of disabled newborns held such views.

According to the American Academy of Pediatrics, neonatologists go to medical school for four years, then train as pediatrics residents for three years, then train for three more years in newborn intensive care. That’s a decade of learning.

Is it reasonable to expect that in this 10-year span the attitude that intellectual disability is worse than death would be challenged?

Neonatologists, as part of their training, should be required to have extensive interaction with families of children with intellectual and other disabilities, so they have a firsthand understanding of what life with these conditions is like. I hope we hear from a neonatologist about what kind of exposure to families of children with disabilities is included in their training.

At the Montreal conference we also heard about the Disability Paradox – that people with serious disabilities rate their lives as good or excellent while able-bodied people, particularly medical professionals, rate quality of life in people with disabilities as poor.

And we heard about research that shows that the way a health problem is framed influences the decision a family makes about treatment choices. How clinicians order information, the words they choose and even the tone of their voice can have a significant impact on how parents of children make medical decisions.

If a neonatologist were to believe that intellectual disability is a fate worse than death, how could that bias not seep through when conveying this diagnosis to families? Wouldn't that belief run contrary to communicating that a child with intellectual disability has value?

When a life hangs in the balance, I believe parents should receive the most complete information about intellectual disability, including the perspectives of families whose children live with it.