Sunday, February 7, 2016

'Everyday life no longer made sense to my new brain'


My Beautiful Broken Brain is a documentary about a 34-year-old filmmaker's life following a stroke that left her unable to speak, read or write but able to sense colours and sounds in a new way.

It's produced by David Lynch and looks fabulous.

Thursday, February 4, 2016

Look again: 'What I was teaching was about seeing'

By Louise Kinross

In 2007 photographer Brenda Spielmann began an innovative program at Holland Bloorview that brought together children with and without disabilities to take digital images. She knew photography was an accessible medium because her son Dylan (above with twin brother Kai) has a disability. More recently, Brenda told me she was starting a project that would involve taking mother and child portraits. Some of the pairs would include children with disabilities. I spoke to Brenda to learn more about why parents of kids with disabilities may want to consider photography—for themselves and their kids.

BLOOM: What is your favourite kind of photography?

Brenda Spielmann: I love storytelling, and storytelling to me involves portraiture and a very personal documentary style.

BLOOM: Why is photography a great art medium for disabled kids?

Brenda Spielmann: The reason I began the program at Holland Bloorview is that digital photography is so accessible to children with disabilities as a form of expression and a voice. In the old days, photography was done in the dark room and you stood over trays of chemicals to develop the film. With digital they can do it in their wheelchair and it doesn’t require a lot of dexterity. It allows them to enter the social world because they can take photos of whatever they want, just like everyone else, and post them on Facebook and Instagram and be part of a social conversation. To me it was this entryway that fights isolation that was so important. Regardless of the disability, there is often isolation.

BLOOM: How is photography possible for kids with little hand control?

Brenda Spielmann: Now it’s even more accessible because you can use an iPad with a large screen and an app that allows you to press anywhere on the frame to take the photo. The iPad can be secured with a tripod on a chair or on part of the frame of the chair. One girl in our program wasn’t able to use her hands at all and she became the director and would choose how to compose the shot and said ‘press the button now.’

BLOOM: What was the name of the program?

Brenda Spielmann: I called it Light Writers. When you split the word photography in Latin and Greek, photo means light and graphy is drawing or writing. Photography means to write with light. So I said we’re the Light Writers.

What I was teaching was about seeing. We get so used to everyday life that we take things for granted, or we’re jaded, and we stop seeing. I taught them to see everyday life in the smallest details.

BLOOM: How can photography be beneficial for parents?


Brenda Spielmann: It can be used as a form of expression and to document change in your child. Photography has a wonderful element of surprise. When looking at the photo afterwards,  it may reveal something that you had no idea about.

If you have a child who is non-verbal, the child can take photos of things and objects and you can use that as a tool of communication.

BLOOM: I was thinking that we don’t often see images of kids with disabilities around us. At least in the media.

Brenda Spielmann:
I have been thinking about this as well. I think we need to look at images of disability more and more so that they become normal and everyday and people become desensitized and comfortable with them.

BLOOM: Is that part of the purpose of your new mothering project?

Brenda Spielmann: The main thing for me with disability is that it’s about isolation: isolation from the point of view of the person with a disability and the parents. And being invisible. It’s ‘hush hush.’ It’s still stigma. People become shunned in a way. It’s not talked about but it does happen.

I want to photograph mothers of children who are able and disabled and see if something is different. I don’t have a plan on the outcome, I just have an idea.

My idea is to take very traditional portraits. I’m thinking in terms of the whole field of renaissance paintings that glorify the mother, and seeing what comes up because children move and moods change.

People talk about the child with a ‘problem.’ I just want to show the beauty and love of it.

BLOOM: What do you hope people take away?

Brenda Spielmann: My goal ultimately is that the relationship between the mother and child is beautiful—so that a mother of a child with a disability produces the same feeling as a mother with an able or ‘normal’ child as people call it.

If you’d like to participate in Brenda’s mothering portraits, or to learn about her workshops on photographing your family, e-mail Brenda at brenda.spielmann@gmail.com


One family shows how games make therapy fun

The Globe and Mail has a fabulous video and article about how therapeutic video games are being developed at Holland Bloorview for children with cerebral palsy. Our family leader Cheryl Peters and her daughters Jillian and Lauren are the stars. This is a lovely video which includes footage from Jillian growing up and interviews with scientist Elaine Biddiss and Dr. Darcy Fehlings. Enjoy!

Wednesday, February 3, 2016

Yes! Disabled consumers demand fashion and fit

Dear Louise: Your fabulous article (In Lucy Jones’ hands, style and disability are a perfect fit) forwarded to me by my son BJ Miller about Lucy Jones certainly spoke to me: I've been disabled since infancy by polio.  

Growing up with a disability back in the ’50s and ’60s was different from what it is now: back then, people with disabilities were seen as less desirable” or “acceptable.” One way I tried to fit it was to always wear clothes that were “in.”

Lucy Jones has uncovered a real need, a market segment that is waiting to be filled. She's also chosen to work with a talented and unfussy, unfrilly designer in Eileen Fisher, who knows how to marry form and function to yield great design.

Lucy Jones “gets it,” that the way people dress is an important personal statement, perhaps especially for people with disabilities, because, as I learned when I was young, it's one way to “fit in.”

Yet it's extremely hard to find fashionable clothes that are flattering with the myriad of figure and function issues we have.  

The search and the trying on can be physically and emotionally exhausting, especially when results aren't satisfactory. It often comes down to choosing between unfashionable “clunky” clothes that fit and work well (assuming we can find even them), or fashionable ones that don't. 

In addition, the higher fashion clothes are more expensive to begin with, and on top of that, they usually need to be altered or even remade, which adds more expense (assuming we can find a skilled tailor)!

Finding well-fitting and fashionable clothes can be a big consumer of our most precious resources: energy, time, money. People like Lucy Jones can help us conserve these to spend in better ways!

Yours truly,

Susan Miller, St. Louis, Missouri (pictured above with her husband Bruce, right, and son BJ, centre. Many of you will remember the interview we ran with BJ, who was a Princeton sophomore when an accident at college left him a triple amputee. He's now a palliative care doctor at the Zen Hospice in San Fransisco.)

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Tuesday, February 2, 2016

What's most important? Intelligence or emotional health?

By Louise Kinross

What factors in childhood predict later satisfaction and happiness in life?

Two articles crossed my desk about studies that come to vastly different conclusions.

The first article is about a study published in 2014 in the Economic Journal by London School of Economics (LSE) researchers. This study finds emotional health in childhood and later is the most important predictor of adult life satisfaction. 

Researchers used data from about 9,000 people born over a three-week period in 1970 and tracked by the British Cohort Survey, which has participants fill out a questionnaire about their lives every five to seven years. 

Emotional health, the LSE researchers found, is more important than education or income to future happiness. Least important, they say, is intellectual performance as a child. 

The second article is a piece I read on Saturday by Globe and Mail columnist Margaret Wente: The explosive science of genetics,

It suggests the exact opposite.

In it, Wente refers to a 2015 study in Molecular Psychiatry from Nature.

"Intelligence (as Dr. Plomin and others wrote in an influential piece in Nature) is 'one of the best predictors of important life outcomes such as education, occupation, mental and physical health and illness and mortality.' 

"Intelligence, one of the most heritable behavioural traits, is also an important factor in class differences," Wente writes. "Intelligent people are healthier, happier and stay married longer. They are also likely to marry each other and produce intelligent children. The implications for inequality and social mobility are significant."

The findings obviously have implications for parents raising children with intellectual disabilities. But I think they also relate in some ways to people living with physical disability. In both instances, people with disabilities tend to rate their quality of life much higher than their families or doctors and researchers do.  

The common view is that disability, of any kind, is a negative.

In NeuroTribes, Steve Silberman's groundbreaking new book on the history and nature of autism, he presents a different view.

He notes that Hans Asperger, one of autism's research pioneers, saw a child's gifts as "inextricable from their impairments." According to Asperger, the "positive and negative qualities" of a child with autism, or any disability, "are two natural, necessary, interconnected aspects of one well-knit, harmonious personality."


This reminded me of a piece by parent and author Rob Rummel-Hudson. 

In it, Rob argues that his daughter's differences are generative. "It changes everything about how she thinks and how she processes the world around her," he writes. "Those different paths are hard for her teachers and friends and even her family to understand, and impossible for us to travel. But they are her paths, and they are beautiful." 

I wrote about it here: Disability doesn't just take, it gives.

I wondered how the 'emotional health' researchers written about above would square their findings with the 'intelligence' scientists, and vice versa. 

So I sent an e-mail to each of the lead researchers.

I'll let you know what I hear.

Monday, February 1, 2016

How difficult could caregiving be? This sister found out

By Louise Kinross

I caught part of this excellent interview on CBC's The Current this morning.

It's about Helen Ries's journey as an Ottawa woman who took over care of her adult brother Paul, who has Down syndrome. Paul, who works delivering mail at Canada Mortgage and Housing Corp., moved in with Helen and her husband after their mother died in January 2015.

Helen's built this amazing website aimed at developing a community of friends and family around her brother so that he can lead a rich life.

She documents her first year as his primary caregiver here in what she calls a failure report.

"I assumed that if I could take a few months off of my full-time work to organize supports, I could sort out our finances and apply to increase my brother's government funding, then hire a few people to help out," she writes. "Everything would be sorted out and I could get back to life as it was in about a year."

A year later, this MBA grad decided she had to resign from her job with the Ontario government. "As one other sister told me, it took her YEARS, yes that is right, years to right herself after becoming the sole caregiver of her brother."

On CBC, Helen talked about how damaging the assessment for supports was to Paul, two days focused on "what Paul cannot do" that led him to self-harm.

She also noted that money her parents had set aside in a Henson Trust can't be accessed because of limits imposed by the Ontario Disability Support Program.

Meanwhile, Paul hasn't been able to get an increase in Passport funding through Ontario's Ministry of Community and Social Services.

"I thought given his situation was truly a crisis he would qualify for some additional Passport funds so I could hire people to support Paul in his daily life," she told CBC.


Take a listen. Or send Helen a tweet

Friday, January 29, 2016

What New York Magazine got wrong about intellectual disability

By Louise Kinross

A fascinating piece came out in New York Magazine earlier this week called How Smart Do You Have To Be To Raise A Child?

It raises excellent questions about the rights of disabled parents, including those with intellectual disabilities, to care for their kids—noting that 37 American states make a disability reason enough to terminate those rights.

However, one statement in the piece never should have made its way past a fact-checker.

In talking about whether intellectually disabled women can raise their children, the author writes: “one of the signs of intellectual disability is a limited capacity for empathy.”

WHOA Nellie!

Halt!

Where on earth did that come from?

As someone who has a child with an intellectual disability, works at a hospital for children with disabilities and has been writing (and reading) in the field of parenting and disability for years, this struck me as false. Outrageously simplistic. And dangerous.

Lack of empathy is not a marker for intellectual disability.

But just to be sure I wasn’t confused myself, I reached out to a number of experts.

First I e-mailed Dick J. Sobsey, associate director of the JP Das Centre on Developmental and Learning Disabilities at the University of Alberta.

“A lack of empathy is NOT a general characteristic of intellectual disability and certainly not for someone with a mild intellectual disability,” Dick wrote. “Mothers’ ability to attach to their child and respond to their needs is affected by their own experience as children.

“Sadly, children with intellectual disabilities are much more likely to have grown up in institutional care or to have been abused and neglected. Institutional care, abuse and neglect are risk factors for difficulties with empathy—in women with and without intellectual disabilities.

There is no reason to believe that an individual cannot be a satisfactory parent simply because of an intellectual disability.”

I then e-mailed Dr. Brian Skotko, co-director of the Down syndrome program at Massachusetts General Hospital for Children in Boston. “People with intellectual disabilities do have the capacity, to varying degrees, to be empathetic,” he wrote. “To assume otherwise would be presumptive. If someone has a lack of empathy, it doesn’t necessarily mean that they have an intellectual disability. And if someone has an intellectual disability, it does not necessarily mean that they have a lack of empathy!” (that's his exclamation point)

Finally, I messaged Dan Habib, filmmaker in residence at the University of New Hampshire’s Institute on Disability. Dan is a member of the President’s Committee for People with Intellectual Disabilities.

“I agree with your critique,” he responded. “This is one of the more widely accepted definitions of intellectual disability. Nothing here implies lack of empathy.

Dan is currently producing a documentary, out in 2017, called Intelligent Lives, about how the segregation of people with intellectual disabilities became the norm, and why it's slowly being dismantled. 

So please, New York Magazine, when writing about one of the most marginalized populations on the planetplease get your facts straight.

Photo above from New York Magazine.