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. 

Thursday, January 28, 2016

In Lucy Jones' hands, disability and style are a perfect fit



By Louise Kinross

Lucy Jones, 24, is described as one of the world’s brightest entrepreneurs by Forbes Magazine. Forbes named her to its 2016 30 Under 30 list for her work designing clothes for people who use wheelchairs: "Her modular pieces incorporate features like added fabric on kneecaps and elbows, zippers that run the length of the arm, and snaps and magnets that make dressing easier," Forbes says.

Lucy, originally from Wales, now works in New York City for designer Eileen Fisher and Runway of Dreams, a not-for-profit that's pushing mainstream labels to produce adapted versions of clothes for kids with disabilities. You may remember our story on designer Mindy Scheier, the mom who founded Runway of Dreams when her son Oliver couldn’t pull jeans over his leg braces. BLOOM spoke to Lucy about her clothing collection Seated Design, which she developed as a graduate student at the Parsons School of Design in New York.

BLOOM: I read an interview where you talked about how clothes express identity. What does that mean for people with disabilities who often can’t wear mainstream clothes?

Lucy Jones: Everyone should have the right to express themselves. Say I’m wearing trousers that have some sort of detail on the pocket. If I sit down, the detail doesn’t work in the seated posture. That’s a shame that detail doesn’t apply to someone who uses a wheelchair. They should have the same rights of expression.

BLOOM: My son isn’t able to fit standard sizes, and it seems that people with disabilities often have to choose function over style. They have to choose clothes that accommodate their differences, but aren’t necessarily the clothes they want to wear.

Lucy Jones: If you’re a great designer you should know how function and design go hand in hand. That needs to be drummed into designer’s heads. Function can determine style, and each should inform each other.

The biggest thing when I come up with a new function is I say ‘Is this stylish? Is this desirable? Would I wear it? Would my friend wear it? If I’m seated, do I feel great and comfortable and attractive?' When designing, we should be asking questions about how it looks in all different positions, and how it functions if you only have the use of one hand or you’re an amputee. We shouldn’t be designing based on how something looks on a hanger.

BLOOM: I understand your cousin Jake, who has hemiplegia, is the inspiration for your work?

Lucy Jones:
Yes, he gave me the idea. He rang me up about four years ago and I asked him how his day was. He said it was really bad and the little things in life really get him down
like doing up his jeans because of the fly front and zipper. He dresses with one hand. So for Jake it's a chore. 

I remember thinking ‘I’ve never talked to him about that.’ I’d always seen him manage and he has the best attitude. I hadn’t considered it. The solution seemed so simple to me and I was appalled that there wasn’t anything out there for him. I took the idea back to my professors. I told them ‘Now I feel I shouldn’t be designing unless I’m designing for the right reasons.’

BLOOM: What are some of the ways that off-the-shelf clothes don’t work well for people who use wheelchairs or who have other physical disabilities or weaknesses?

Lucy Jones: A did a lot of focus groups and learned about things I hadn’t thought of. For example, the weight of clothes if you have trouble with balance or if one side of your body [is paralyzed]. Coats are super heavy. It’s very hard in standard clothing to maneuver your body into arm holes and zippers, especially if you can’t see them.

With many clothes, wearing them in a seated position is uncomfortable and not a good fit. If you’re seated, your jeans will fall in the back, because your fat and muscle spread. Your thighs expand, your kneecaps are bent and fabric gathers in the back which is uncomfortable.

Buttons are real challenges. Collars are an issue. If you’re self-propelling in a wheelchair your neck and muscles are far stronger, so you’re going to have more muscle bulk. So standard collar sizes won’t suit a standard top anymore. You’re going to end up needing a larger collar with a size small. These are things that have to be looked at.

BLOOM: How did you find models to work from?

Lucy Jones: That was really easy. I sent a mass email on Craigslist and posted on Yahoo classifieds and contacted organizations. I couldn’t believe the response I had back from people saying 'I'd love to work with you.' I did focus groups. One of my main models is Ronnie. I love her energy.

She has multiple sclerosis and she’s really struggled with clothing. She grew up wearing a standard size, then she began using a manual wheelchair and then moved to an electric chair. It was so interesting to see all of the alterations she had done by seamstresses so that clothes would fall better and feel more comfortable as her body changed. Ronnie can't independently dress. I was dressing her and I noticed how difficult clothes are for a caregiver dressing someone.

BLOOM: What is different about your designs for people using wheelchairs?


Lucy Jones: The main difference is the entry point into garments. I know elbows are an issue if you don't dress independently. It's uncomfortable when caregivers pull limbs through armholes. I found ways to open up the back seaming to expand the space to provide for comfort. Then it would draw with a string back into a tie or bow that is much more appealing.

I completely altered the anatomy of the sleeve (see photos below). I add way more fabric and padding around the elbow. That way if you're resting, your arms can lay more comfortably. If you're self-propelling, you have the amount of pull in the elbow you need, so it doesn't put pressure on the fabric. I did the same to the kneecaps: I took away all of the gathering at the back of the knee crease.

The other functionality I added is zipping. I realized when I was pulling Ronnie's arm through a sleeve how difficult it is to get a sleeve over the elbow. It's like putting your foot through a sock. Ronnie wanted to wear shirts. Shirts are everywhere in everyday society. She's a business woman and she wanted to look formal. So I did the shirt so that the whole arm can be zipped up in the sleeve. You put the arm through the armhole and lift the sleeve around the arm and zip it up, like you were putting a banana back together.

BLOOM: There are some designers who make clothes for people with disabilities but I've heard they can be quite expensive.

Lucy Jones: We want clothes that can be affordable. Because this project was a school thesis, I was allowed to think big and not think about the cost. A lot of my functions would not be cheap to produce and manufacture. But other things, like the sleeves that open with zippers, are easy and really cheap.

I would never want to make a separate line or category of clothes, because I think everyone should go and shop where they want to shop. It should be mainstream. That's why I'm working with Runway of Dreams. They're going to be having a huge launch with a major brand in March to adapt existing clothing. So it's the exact same line, the exact same clothes, with the adaptations built in.

BLOOM: What sizes?

Lucy Jones: It's kidswear but the sizing runs up to adults.

BLOOM: What is your role with Runway of Dreams?

Lucy Jones: I'm working with Mindy to launch a new campaign for diverse individuals who use wheelchairs or crutches or who are amputees. It's so diverse and obviously the alterations need to reflect that. It's problem-solving. It's knowing you can make someone's day easier and make them feel included.

BLOOM: Do you also do other work?

Lucy Jones:
I won a nation-wide competition and am working with Eileen Fisher on a one-year residency as a social innovator. I'm working with two other girls to design solutions for all of the damaged garments that customers have brought back that we don't want to put in a landfill. There are heaps and heaps of damaged garments.

BLOOM: Wow! Amazing. How does it make you feel to know that Forbes has named you as a top entrepreneur?

Lucy Jones: I think this is showing that there are steps toward inclusivity in design. The fact that people nominated me and the design judges thought it was a great idea for the fashion industry. It makes me proud to know we're moving in the right direction.

BLOOM: Sometimes I feel cynical about people in fashion wanting to see more inclusion, or even understanding why it's important. It seems that how we define beauty is becoming more and more narrow.


Lucy Jones: What I have seen, and what I do think is so positive, is this collaboration by Runway of Dreams with the major brand I was talking about. We had an event with kids with disabilities modelling the new clothes and having the best day ever. Most of the parents were in tears because they said this is crazy to have our kids wearing the same brands as the other kids.

Kids with disabilities are singled out in the class and the parents said that to have their kid wearing exactly the same thing was a huge breakthrough. Parents of young kids were choked by the whole thing. One dad said he couldn't express how much it meant to him and his family. The CEO was present and the style team said this was one of the best days they've had at work. It totally shook them to see how happy the parents and kids were.

BLOOM: I imagine that experience made them feel like they were respected and valued. It said something about how they were viewed.


Lucy Jones: Even though it was positive, it was almost like, why should they have to live with that? Why hasn't this already been done at a high level of design?

BLOOM: I know parents who spend an unbelievable amount having mainstream clothes tailored, but sometimes they still don't end up looking right.


Lucy Jones: We want adaptations already in the garment. This is design for humanity. This is just one collaboration. The idea is to tackle loads of brands and if we can have the same experiences with many brands, I think we're going to make waves. I get shivers thinking about it.

BLOOM: You said your project at Parsons explored the relationship between disability and beauty. But disability doesn't usually fit into conventional ideas about beauty.

Lucy Jones:
I think there is a way to change perceptions. There's no simple answer to that, it's just great design. We've been informed as a society that when people look or walk differently it's a bad thing. It's not, it's just adjusting your eye.

There's a famous furniture designer that I love, Charles Eames. He made a leg splint that I thought was a wall piece. I thought it was an ornament because it was so beautiful. That's really smart. I want to see hearing aids with Beats. There's no reason why walking canes can't be 3-D printed. When you have a wheelchair it doesn't have to look bulky and thermoplastic. You can redesign it to be whatever the person wants, whatever makes them feel themselves. Great designers know how to do it.