How a disability ramp made one little girl's day

By Louise Kinross

Yesterday on the Danforth I saw a toddler with mini ponytails sprouting out of her head. She looked like she'd just learned to walk. She stopped in front of one of the StopGap ramps that dot the Toronto street, allowing those in wheelchairs or strollers to get up over the single-step storefronts (See our story on Luke Anderson, the man behind the StopGamp ramps).

She toddled up the apple-red ramp, got to the top, produced an enormous smile, then toddled down. Then she did it again. And again. And again. Her mother was several feet up the street, unlocking a bicycle. Every time the girl got to the top of the ramp, her tiny figure disappeared out of her mother's sight line. Just for a moment. Then reappeared.

For the next 10 minutes, this little miss continued to take small steps up the ramp, turn around, smile at her physical mastery, then come back down. People on the street began to stop to watch her.

While she probably wouldn't have tried the single step up to the door independently, the red ramp with the most gradual of inclines gave her confidence. It was the perfect example of universal design.

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What does a 'blind' photographer see?

By Louise Kinross

When Mark Nicol was a kid he picked up his dad’s camera a couple of times but was frustrated because he couldn’t see through the viewfinder.

That’s because he was born with vision loss: he sees one-tenth the resolution of what someone with regular vision sees.

So it may be surprising to learn that today Mark’s passion is photography. And his images are part of an exhibit called The Mind’s Eye at the Canadian National Institute for the Blind (CNIB) in Toronto.

“The beautiful thing about photography is it’s a creative outlet,” Mark says. “No one is saying I have to take the same pictures or do the same style as someone else. Being creative means finding your own way.”

The CNIB exhibit includes pictures from photographers who are blind or partially sighted from across Canada. “There are many misconceptions about vision loss, but none as pervasive as a life of complete darkness,” says Len Baker, executive director and regional vice-president Ontario. “We wanted to challenge this stigma.”

Mark says he got his first camera in his 30s, when digital cameras came out and he realized he could see through the LCD screen. “I thought I’d get it to take goofy snapshots of friends but I started using it creatively right away and was hooked.”

One of the ways Mark makes photography work for him is to have an eyeglass prescription built into his viewfinder so he can take his glasses off and put the camera right up to his eye. “I’m still only seeing one-tenth of what someone with good vision sees, but as far as I’m concerned, things are as clear as they can get.”

Another way he adapts is to use auto-focus. “In the old days before our current round of digital cameras, a lot of photographers were focusing manually by turning a ring on a lens. I can’t see well enough to do that. Mastering my auto-focus system, and knowing when I can count on it and when I can’t, has been crucial.”

Mark, who lives in Victoria, B.C., says he’s a generalist who loves shooting everything from landscapes and architecture to pets and portraits. “I also adore doing travel photography and I have a little studio in my garage where I do some product work.” The photo above of St. Peter's Basilica in Rome is his (please click on it to see it in its entirety).

Mark says he’s not sure that the images he produces are different because of his vision loss, but his method of taking them is.

“I’ll walk the scene a lot before I take a picture and explore my subjects differently than someone who has better vision.”

Mark says people assume that vision loss is the same for everyone, but in fact is very individual. “There are people in this exhibit with a range of vision and with completely different types of vision from what I have.”

He notes that there are photographers in New York City who work without any sight. “They’re in a photography studio and they sit a person down in a completely dark room and they set the camera on a tripod. They open the shutter and they walk over with various flash lights and they actually paint light on the person, feeling the person’s face and getting a sense of where the person’s limbs are. At the end of the session they have a picture of a person painted with light. It’s a completely different approach.”

He encourages parents of kids with vision loss to let their kids try photography. “As a visually impaired person figuring out photography, you realize a lot of it is simple problem-solving: ‘Mom, I can’t see if my picture is in focus.’ So you have to do some problem-solving. I’m amazed at the incredible images people take who have much lower vision than me, or no vision. Either you solve the problem or you come about it backwards and maybe you don’t solve it, but you take it in a different direction with a photo where that problem isn’t an issue anymore.”

The Mind’s Eye exhibit is on at the CNIB at 1929 Bayview Avenue in Toronto. Friday May 22 from 9 a.m. to 4:30 p.m. is the last day. 

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Could surgeons benefit from a coach like athletes do?

By Louise Kinross

I just read a fascinating review of the new book Do No Harm, a memoir by one of Britain's top neurosurgeons Dr. Henry Marsh. 

New York Times reviewer Michiko Kakutani describes it as "an extraordinarily intimate, compassionate and sometimes frightening understanding of his vocation."

This quote from the book stands out: "It's one of the painful truths about neurosurgery that you only get good at doing the really difficult cases if you get lots of practice, but that means making lots of mistakes at first and leaving a trail of injured patients behind you."

This reminded me of a National Post story last month in which a Toronto surgeon advocates for ongoing coaching of surgeons using video replays of operations.

"We graduate, and then we start practising," said Dr. Teodor Grantcharov of St. Michael's Hospital. "And nobody watches anymore. Nobody sees what you do and how well you do it. We're waiting on adverse outcomes."

The Post story references a study by Grantcharov in the journal Annals of Surgery that compares coaching residents using video to conventional training in the class and in the operating room with senior surgeons.

According to the study, general surgical residents at the University of Toronto who met with an experienced coach who used a video of a trainee performing an operation to identify errors, then showed an expert clip and gave advice, performed at a higher skill level and made barely half as many technical mistakes as those taught conventionally.

It works for training athletes and pilots. Doesn't it seem like a no-brainer that it would work for surgeons, including neurosurgeons?

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How to keep climbing with a medically complex child

By Jade Biesinger

My name is Jade and I live in England at the other side of the “pond” with my husband and four lovely children. Heni, one of our daughters, has Trisomy 18.

Heni can’t walk, talk or do everyday tasks and is classified as having profound and multiple learning disorders. She wasn’t expected to live beyond birth but here we are—almost 20 years later—still heading in to uncharted territory.

I've often described our experience raising her as feeling like we are climbing up a mountain. We started out with lots of energy and supplies, only to find that they have been used up along the way—having covered many different terrains. As time has progressed the ascent seems to have steepened and we've got progressively more tired and feel in need of more rest stops.

During this time I feel I've given up lots of “me”—looking after Heni and subjugating my own needs to the bottom of the pile. I’ve encountered “ill” health, “un” sanity (I won’t say insanity because that’s something different) and at times have been bereft of creativity or balance in my life. Perhaps you could describe it as survival mode?

I was stuck. Stuck in the house, stuck in the role of carer, stuck in the mindset of “will life ever be any different?” I was living what sometimes seemed like a monochrome life—one I had never expected to be living for so long, but all the time keeping my head down and continuing to climb.

As I’ve journeyed on experiencing the valleys and peaks, I’ve not only been searching for ways to help my daughter and family and add colour to life’s struggles, I’ve also been looking to improve my own health and wellbeing.

When Heni was younger she used to have the energy to do full days at school but progressively over time I’ve seen her energy wane and her capacity reduce (strangely on par with my own?).

Nowadays she only has the energy to go to college for three-and-a-half hours in the mornings and then comes home to rest, sleeping for about one-and-a-half hours.

My time to accomplish anything has therefore dwindled from a whole day to a few hours.

Making time count is important to me, and I put my health as a high priority. Some of the things I do during that time frame are to go for a walk or run or do some form of exercise (according to how and what I feel I am capable of). I try not to overextend or overdo anything, but to be consistent in my actions. An important learning point for me was:

I can only give out so much before I become depleted. So I have to consistently fill myself before I can give to others.

I liken it to a watering can with a bunch of holes. It’s never going to be full up because it’s continually leaking out. You have to patch the holes up and replenish it before it can give water out of the spout and shower the flowers! I can’t always control every type of energy expenditure (like when my husband works away a lot or when Heni takes a dive for the worse) but I can control the other holes that leak energy.

For me, those include food intolerances, not eating right, sleep problems, negative thinking and too much or the wrong type of exercise.

It wasn’t until about eight years ago that I suddenly realized that I was “toast” and needed to have a break—on my own! My husband virtually forced me to go. I cried all the way to the airport and most of the journey to my destination, by which time I wondered how on earth I had got in to this state.

I had always been an independent person who would do anything and loved exploring and adventure. But I’d become a shadow of my former self. I needed some ME time. Which is the second thing I had to learn:

I’m always too hard on myself and feel guilty for everything and anything. Therefore it’s important to learn to quit the guilt.

How could I leave my daughter? I asked myself. How could my other children cope? What if anything happened to my daughter while I was away and the worst happened: she died? Would I ever forgive myself for leaving?

The week I had away was a wonderful pause in space and time. It made me realize that I needed to be strong, I needed to recharge so I could go back and have something to give back out again. I needed to stop the guilt and realize I wasn’t super human and could only cope with so much. I needed to look after myself too.

It sounds kind of selfish when you read it in the cold light of day—but what is the alternative?

There is a quote that says: “To lift someone else you have to be on higher ground.” How does losing your physical or mental health put you on higher ground?

I returned back from the holiday in a better space, but guess what?

It wasn’t long before that watering can was emptying again…and quicker! For a number of years I did a solo holiday or went away with a girlfriend. I always had fun, enjoyed the change in scenery and always came back feeling recharged and ready to go again. But, it’s surprising how soon you forget, so my lesson 3 was:

Remember the things you’ve already learned! Get up, dust off, try again.

I would forget to take a break and replenish my energies and land back in the same place as I’d previously been!

Even now I’m still resistant to the fact that I need help and I need rest from time to time. I still feel guilty and find it hard to just do nothing!

So what is the consequence of consistently neglecting yourself and not listening to your needs? Probably one of the most frequent occurrences resulting from “dis” ease today is that of chronic stress, which is the precursor to most illness out there.

Which leads me on to lesson four:

I’m in charge of my own health.

Now that doesn’t mean I don’t go to see any one to advise on health matters…on the contrary. I think it’s important to get the best advice possible and that often involves a number of different opinions.

For me that involved getting a series of lab tests done to show me what was happening in my body. I learned I was quite severely depleted in practically everything! All of a sudden I understood why I felt so rubbish! What I had failed to realize was that the constant stress I had been under was using up all my nutrients and leading me to a point where it was a struggle to do anything.

On to lesson five?

By small and simple habits are great things brought to pass!

Everyday consistency of small actions for me means taking supplements, small changes in eating or exercise habits and getting to bed a few minutes earlier. It takes time to get in to a hole and it takes time to get back out again. Often the temptation is to do something a few times and say “well that didn’t work” and move on to something else, without really giving it a chance. Sometimes it takes years for health to return fully. So, I am expectantly hopeful. Which leads me to lesson number six, my most recent:

Be patient, hold on to hope and enjoy the journey.

I read an article recently that described a demonstration. A person held two soda cans, one empty and one full. The empty can was squeezed and began to bend and then collapse under the pressure. The full can withstood far greater pressure and held firm. The demonstration was likened to us needing to be filled with spiritual strength (whatever that looks like for you as an individual). When spiritually fed and “full” we are able to withstand far greater outside pressures and forces. It doesn’t matter how many respite breaks I take or vitamin supplements I pop if I don’t have this type of strength. Without it I would have been crushed a long time ago.

There’s a scripture on a quilt that hangs above my bed, which reads: “I’ll wait on the Lord, be of good courage and he shall strengthen my heart.” I love reading those words and realizing that there is someone who understands the big picture, someone who I can “hope in and hope on,” someone who is teaching me, step by step, to be a better person and who is beside me (and you) every step of the way.

I gain strength in the knowledge that I’m not on this journey alone and that there’s someone higher and far greater than little old me who doesn’t have all the answers.

There are also people like you who are trekking up your own personal mountains, on similar journeys, but experiencing different valleys and peaks. We have to remember that as we climb we are doing so without a map. We don’t know where the peaks and valleys are and sometimes we can’t even see the top of the mountain. My wish is for us all to keep “on the way” and learn to love the terrain. And I hope that when we look back on the view we will see that our journeys were varied, rugged but stunningly beautiful.

Being a carer to my daughter has been one of the most difficult journeys I have ever had to take. It’s still a learning process and there are still peaks to tackle, but little by little I am learning to stop, enjoy the vistas and savour the time I have left with her. My plans for the future, and advice to you? Keep going!

You can follow Jade on her blog Henibean. She describes it as “learning how to live amidst challenges and maintain health, sanity, creativity and balance.” She uses her experiences as mum to Heni and her background as a physical therapist and naturopathic iridologist. “Please drop by and join me.”

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BLOOM media roundup

Here are some recent stories related to disability, parenting and health. If we missed a good one, please post in the comments. Thanks!

A life in motion, stopped cold The New York Times

Video about a Brazilian who learns she's qualified for aerial skiing in the next Winter Olympics from an ICU bed after breaking her neck in a skiing accident.

Social media campaign aims to increase profile of Canadian research The Globe and Mail

Research2Reality is a $400,000 social-media campaign shining a spotlight on the work of academic researchers at six universities across Canada, including the University of Toronto. Follow their video series.

Sex, lives and disabilities Science 2.0

"Disabled people's sexuality has been suppressed, exploited and, at times, destroyed over many centuries. It has been seen as suspect, set apart and different from the sexuality of non-disabled people." This piece looks at the move toward sexual rights for people with disabilities.

'On the Move' by Oliver Sacks The New York Times Sunday Book Review

Author Andrew Solomon writes: "The emergent field of narrative medicine, in which a patient’s life story is elicited in order that his immediate health crisis may be addressed, in many ways reflects Sacks’ belief that a patient may know more about his condition than those treating him do, and that doctors’ ability to listen can therefore outrank technical erudition."

Holograms of disabled people appear if you try to park in their space Digital synopsis

Projections of a real disabled person pop up every time a non-disabled driver tries to park in a disabled spot in this Russian mall. 

The life of Barbara Turnbull, in her own words The Toronto Star

An ebook written by Barbara Turnbull, who died on Sunday, described her physical and psychological battles and the lessons she learned after the shooting that left her a quadriplegic 30 years ago.

Patient care for children with intellectual disabilities can be improved Global News

Research at IWK Health Centre looks at how stigma in hospital affects care of ‪kids with intellectual disability.

Pilot project to give cash to Ontario patients for self-directed home care The Globe and Mail

Patients or caregivers will receive money to purchase services they choose after a scathing report on Ontario's home care.

The case for more black doctors The New York Times

"For now we have to attack the problem of racial health disparities from as many angles as possible. Black doctors are an important part of this mission."

Film review: Where Hope Grows Variety

A drama about a fallen-from-grace baseball player who needs a shot at redemption, and a young grocery clerk who could use a best buddy while dealing with Down syndrome.

Halifax hospitals replacing flower beds with vegetables CBC

Vegetables will replace flowers, shrubs and even the lawn outside 10 different hospitals. The facilities will work with food banks, community groups and restaurants to find hungry people for their home-grown food (what about the patients?).

And finally, on Sunday May 17, hop over to The New York Times' Motherlode blog to read this piece running that day:  "Come read a different kind of tech story, about a mother who thought a 3D printed prosthetic arm would be perfect for her 8-year-old, and a son who thinks his arm is perfect just the way it is."

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A reading from author Julie Keon

Here's author Julie Keon reading from her new book What I Would Tell You: One Mother's Adventure with Medical Fragility about raising her daughter Meredith, who was born with severe brain injury. The book, targeted to parents and professionals, can be purchased on Julie's website.

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What Barbara Turnbull said about rehab and grief

By Louise Kinross

In 1983 Barbara Turnbull was shot during a robbery at a convenience store where she was working a night-shift as a Grade 13 student. Last Sunday, The Toronto Star, where she worked as a reporter, wrote that she had died at age 50 as a result of complications from pneumonia.

Barbara gave a fabulous talk at Holland Bloorview in 2002 about her 18 months in rehab and how she learned to navigate the world with quadriplegia and a lot of technology. I wrote about it in our staff newsletter at the time.

What jumps out at me as relevant today was a comment she made about professionals not allowing her to express her grief. "At one time, when I was going through the worst depression, a nurse said 'If you're not careful, people aren't going to want to be around you,'" she recalled. "It had such a devastating impact on me, because I felt I had to be upbeat for people or else I'd end up alone."

Holland Bloorview scientist Barbara Gibson spoke to BLOOM recently about how therapeutic environments may send the message that negative emotions are to be repressed. "Sometimes patients are made to feel that they can only express positive emotions with professionals," she said. "You know, 'we're all cheerleaders here.'"

I thought that was an important message to keep in mind.
What Barbara Turnbull told us she found most helpful during her rehab was talking to people with acquired disability who were further along in the journey and could encourage her and offer practical advice.

Photo by Toronto Star photographer Lucas Oleniuk

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