Monday, March 2, 2015

BLOOM media roundup

Disabled by design Slate
"We inhabit a culture that perpetuates the idea that disability lies in bodies rather than in design." Fascinating.

Disabled Girls Talk podcast on friendship Tumblr

I am loving this dialogue between two young American women with disabilities, one visible, one invisible. This piece is about how disability affects friendships. If you haven't heard Maddy and Emily, you're missing out.

StopGap: How this innovative Toronto business is making the city more accessible The Globe and Mail

Amazing video of Luke Anderson, the man behind storefront ramps that are making Toronto more accessible. Luke's life changed in a second when he sustained a spinal-cord injury in a mountain-biking accident.

When the system fails The New York Times

"In the overwhelming apparatus that medicine has become, sometimes the patient gets lost. So does the doctor." This is a heartbreaking tale from a primary doctor about a patient who fell through the cracks.

Deaf or death? In drug trial, parents weigh life vs hearing loss The Wall Street Journal

Hearing loss is one side effect of a drug in clinical trials to see if it extends the life of children with Niemann Pick Type C, a cholesterol metabolism disorder.

Mattia Luparia, the Jackson Pollock of the wheelchair Global Observatory for Inclusion

This young Italian artist uses a wheelchair with paint brushes and rollers attached. Great video with his father and samples from his art collection.

The MIT science club for disabled children Priceonomics
In the late 1940s Quaker Oats funded an MIT study that involved feeding 40 children with developmental disabilities cereal with radioactive tracers.

Rick's Rant: Fighting veterans Rick Mercer Report

A friend of Rick's who lost both legs in Afghanistan must get a doctor's note every year proving that his limbs haven't grown back.

Working wisdom: How workers with disabilities give companies an edge The Globe and Mail

A look at the business advantages to hiring people with physical and mental disabilities.

London school board failed in response to sexual assault, jury finds The Toronto Star

A London, Ont. jury has found a school board failed in its response to the sexual assault of a female student with a developmental disability in a high school washroom five years ago.

Ableism, community living and the myth of independence, The Caregivers' Living Room blog

"Recently, I've seen a trend that worries me. Social media disability support groups are commonly hosting conversations in which independence is trumpeted as an aspiration. That's okay, except that independence is simultaneously being presented as the most necessary ingredient to human worth."

FIXED trailer

"People should think of disability as another human experience that embodies qualities of human adaptability that are common to all people whether they have a specific disability or not."

A boy and his dog trailer

About the impact of a dog on a British boy with a rare genetic disorder.

Friday, February 27, 2015

Stick with this trailer for FIXED, it will blow you away


Thursday, February 26, 2015

What's in a name?



By Louise Kinross

It seemed a simple exercise. I was at Columbia University doing a a course for clinicians and writers on narrative medicine. In our small group, we were asked to write for five minutes on this prompt: “How did you get your name?”

Then we went around the table and read out our pieces. The stories that emerged were complex, powerful and in many cases deeply painful. Often times a person had been named in memory of a relative—but sometimes this connection was perceived as limiting, not liberating. Other times the child didn’t ‘click’ with his or her name, or family dynamics involved in the selection of the name caused discontent.

The exercise showed me how important the personal meaning of a name is and how people can interpret a word in strikingly different ways. Words matter and shape how we think about things. But sometimes the same word can evoke different or even opposing images or feelings in people.

Which brings me to the topic of how we name disability—or how we describe people with disabilities.

Back in the 1990s, when my son was born, there was a people-first movement that informed how we describe disability. The idea was that disability is a part of someone, but it doesn’t define them. So we referred to “a child with a disability” as opposed to “the disabled child.”

As parents, many of us alligned ourselves with this approach and still use it today.

But a rethinking of how disability is described is playing out on social media, where many adults with disabilities say they prefer to call themselves “disabled.”

Here’s how S.E. Smith at This Ain’t Living described it recently:

“There’s something inherently blamey, to my ears, about ‘person with disabilities,’ although I have the utmost respect for people who prefer to identify with that term (or with other person-first language, like person with autism, or person with mental illness). It sounds less like a part of someone’s identity (autistic or autistic person, mentally ill person) and more like an appendage, an externality, something sort of clumsily attached; something someone is forced to live with. It also sounds like something a person should be able to fix or overcome, rather than an accepted part of that person’s identity and reality.”

Smith notes that “person-first language is…rooted in the medical model: Something is wrong with you. You should be fixed.”

In contrast, Smith describes the “social model: You have an impairment, and society disables you.” For example, “society is built for people who are not paralyzed, thereby making it difficult for you to fully participate in society as an equal.”

The social model of disability teaches that people are marginalized by the environment, people’s attitudes and inaccessibility, rather than the disability being something that resides within them.

Some childhood disability researchers have adopted this approach. 


“‘Disabled people’—the terminology that I most often use—suggests that disability is not something a person has, but rather something experienced as a result of prejudice, discrimination and social exclusion,” says Bloorview Research Institute scientist Barbara Gibson, who is a co-author of Rethinking Rehabilitation: Theory and Practice expected out in March.

Among disability advocates there is a move to identity-first language. Lydia Brown describes this in a piece at The Autistic Self Advocacy Network.

…When people say “person with autism,” it does have an attitudinal nuance,” Brown writes. “It suggests that the person can be separated from autism, which simply isn’t true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the colour of his or her skin.

“In the autism community, many self-advocates and their allies prefer terminology such as ‘Autistic,’ ‘Autistic person,’ or ‘Autistic individual’ because we understand autism as an inherent part of an individual’s identity—the same way one refers to ‘Muslims,’ ‘African-Americans,’ 
LGBTQ,’  ‘Chinese,’ ‘gifted,’ ‘athletic,’ or ‘Jewish.’

Emily Ladau, a disability blogger at Words I Wheel By and contributor at the Disabled Girls Talk podcast (which is a really cool dialogue between two young women) expands on this idea.

“You wouldn't go out of your way to say ‘a person who is female’ or ‘a person who is Jewish,’ because neither of these things are perceived to be negative by society in the same way as disability. When you say person with a disability, it implies you want to remove the disability from the person, as though acknowledging their disability means they are less of a person. However, disability is simply a state of being—not something that should cause shame. And in fact, my disability identity is something in which I personally find a deep sense of pride...”

I think we should respect the words that people choose to name themselves, recognizing that we need to clarify the intentions behind them. Ask people why they choose certain words—don’t just assume that you know what's intended, which is what I used to do. In the past I interpreted the phrase ‘disabled children’ to be a devaluing of a group. I had my word police antenna up, and I was quick to judge.

But after listening to adults talk about why they identify as 
disabled, and researchers explain their rationale for positioning people as being disabled by physical and attitudinal barriers, I hear the words in a new way.

Emily Ladau, in a great read on language sums it up beautifully: “Language is rarely ever a clear-cut matter.
” What do you think? 

Tuesday, February 24, 2015

My epic parenting fail

By Louise Kinross

I’m often sent story pitches for what strike me as ridiculous products that in no way relate to parenting, let alone parenting children with disabilities—but which perhaps tell us something about our culture.

Case in point. This morning I got an e-mail suggesting a story about
the Beebo—a rotating bottle holder you place on your chest while feeding so that your hands are free to read to your newborn (or accomplish other tasks—let’s not even go there).

A publicist suggested this would make a great story because it’s almost National Reading Month and four studies show that reading to a newborn boosts their development. For example: “According to analyses of the Program for International Student Assessment, which is given to 15-year-olds worldwide, the biggest factor influencing higher scores was whether or not a child was read to on a regular basis when they were young.”

Reading this story pitch on this particular morning made me cry. When my son was four months old, not a newborn, he loved to be read to, and he would sit in my lap and track picture books left to right, even though he had an undiagnosed and untreated hearing loss.


The reason I cried thinking about that memory was that I heard some news yesterday that I didn’t want to hear.

The information was delivered by a very kind, committed person, but the news itself was related to yet another thing my son may never do.

He’s almost 21 now, and you’d think I’d have been given the extended list of what my son “can’t” do. Goodness, it’s not like we don’t have file folders full of bulky reports detailing the myriad of everyday things—like talking, or running, or doing a handstand in the pool or writing effortlessly, or reading at his age level, or having friends—that are beyond his grasp.


Of course we also have reports on the ways in which we’ve tried to find alternate paths for these things—like a voice device to take the place of speaking—that have failed. Not always because my son “can’t” do what is needed, but sometimes because he “doesn’t want” to do it. And when a child grows up, you can’t always force them to do something in the way that you can a small child.

So in the case of a voice device, he finds them cumbersome and clunky (and as a Mama, I have to agree that they’re not intuitive and user-friendly the way mainstream business technology is).

But I digress.

Yesterday I was told that my son is likely incapable of doing something that the average person takes as a given and necessary and productive part of life.

It’s not that we, as his parents, weren’t aware that this prospect was unlikely. We may be hopeful, by we’re not stupid.

It’s more that we were hoping that there might be a different ending to this story, in the way that ever since he was born, and ever since his diagnosis, and all the way through his years of growing up, we have held onto hopes that we could “change his story” and make it what we wanted it to be for him.


At first, we wanted to give him what we felt was a “just” and “fair” starting point for a person in this life, in the same way that we were given this starting point in our own lives, one that entailed many gifts of ability—not because we deserved it or had earned it. That is why they are called gifts. 

And when we couldn't give him that starting point, we thought maybe we could wrestle back some justice in the way he developed. You know, those stories about beating the odds that everyone wants to hear?

Whenever I get news like this, even though I know it’s counter-productive, I can’t help looking back and wondering what I didn’t do, what I could have done differently, and trotting out examples of other family situations that have turned out differently, even for individuals who have the same syndrome as my son.

Okay, maybe my kid was dealt a bad hand in life, but couldn’t he be one of the lucky ones amongst those kids who have been dealt the same hand?

And then I have to acknowledge that, in fact, my son has been making some nice gains recently in different areas—for him. The problem is that we will be the only ones to recognize them. He is on a completely different trajectory from other young people, an alien, if you would, on this planet. So those gains he makes don't mean anything here in this world. They will never be enough.

There isn’t any point to this post, any silver lining, other than the fact that one of our readers sent me a lovely message of compassion and encouraged me to stand back and regroup while holding on to the belief that our son’s life can still have meaning (even though it will in no way resemble that of others).

When I receive story pitches about products like the Beebo that are touted to significantly improve the abilities a kid is born with, I don't know whether to laugh or cry. Do parents need to worry about whether they’re immersing their newborn in reading? Will it make them better, more successful, parents if they’re reading to their newborn rather than cuddling and cooing to them? Will it change the course of their newborn’s life?

Cause I have followed, to the best of my ability, every instruction, every piece of stray advice and every therapy recommendation given to me to support my son since birth. And I have bought some of the craziest products and alternative therapies—at great expense—on the off-chance that a smidgeon of their marketing spin was valid. I work in a hospital, after all, it’s not like I don’t hear about the latest things. I started an international organization for families affected by my son’s syndrome. I know how to research. I know how to work hard.

And it didn’t make a difference.

So I say take your Beebo bottle holders—and your plans for raising your newborn’s IQ through reading—and shove them. If we don’t have time to hold a newborn, and his bottle, because we're too busy reading to them, something is seriously wrong with this world.
  

Sunday, February 22, 2015

For Hanzhen, life is in the detail






By Louise Kinross

Hanzhen Yap is a 16-year-old Malaysian artist with autism whose intricate sketches of historical buildings, animals and everyday objects have been shown in 27 exhibitions. He lives in Johor Bahru. For our interview below, Hanzhen's parents read him our questions. “For questions that he doesn't answer frequently, Hanzhen struggles to find the words, says his mother Yvonne. His parents have elaborated on some answers. Please click the image above to see it in full.

BLOOM: What do you enjoy drawing the most and why?

Hanzhen Yap: I like to draw buildings. Buildings are nice, with lots of details. Arulmigu has the most details.

Parents: Hanzhen loves details. Somehow this has always been the right formula for him—the more complex is the object, the better is the outcome. Hanzhen is referring to his favourite sketch of the Arulmigu Rajamariamman Devasthanam Temple in Johor Bahru (see image below). This small Hindu temple serves the vibrant Indian community that [includes] some of the busiest and ethnically colourful shops around that area. Hanzhen seems to have captured the essence of this vibrancy in his sketch.

BLOOM: Do you draw real-life objects or from photos?

Hanzhen Yap: I draw from the photographs.

Parents: Hanzhen will take photographs of the object from many different angles and then he will select the angle that he prefers to sketch. In the case of a building, the ideal situation is when he is able to visit the site and spend some time there to absorb the atmosphere and the feel of the place before he starts on his drawing.

BLOOM: How did you learn to draw?

Hanzhen Yap: When I was small, Mom taught me how to draw. I also practised drawing with Pa. We drew all the things in the house.

Parents: Hanzhen is referring to the training sessions where we taught him speech and reading by pairing every word with a thumbnail sketch. We devised this simple speech training technique because he was a visual learner and could memorize what he saw. Together we drew everything around the house, from cups to keys, telephones, credit cards and even his father's feet! Soon he began to draw better than any of us.

BLOOM: How are you able to capture so much detail in your drawing? When I look at your elephant, for instance, I see so much more than I would normally see.

Hanzhen Yap: That’s my elephant “Loxodonta Africana!
(see below) I see a lot of details on the elephant’s face. It’s rough, it’s serious, and many many things...

Parents: Hanzhen sees objects in incredible details and interprets them in an ornate fashion, clearly displaying a unique style.

BLOOM: What is most difficult about drawing?


Hanzhen Yap: Difficult... when it’s on a big paper… like the JB Skyline. I get very tired after that.

Parents: His detailing to perfection and his desire for correctness are what make him tired.

BLOOM: Did having parents who are architects help you in your drawing?


Hanzhen Yap: Yes, Pa and Ma helped me to choose the picture to draw.

Parents: We are helping him create popular sketches and collections. We are like his manager!

BLOOM: How do you hope your drawings affect people?



Hanzhen Yap: I hope…. a lot of people will like my drawings.

Parents: His drawings give a lot of hope to gifted special artists. It opens up possibilities for parents seeking a future for their kids.

BLOOM: How do you get ideas for what to draw? I liked your collection on kettles. How did you decide to do that?


Hanzhen Yap: Pa and Ma helped me to choose.

Parents: We know the subjects that he will excel in sketching, thus we would channel his energy towards them. If we had already prepared a collection of subjects, then he would choose the ones that he prefers to draw first. For example, he had chosen to draw the Sydney Opera House, the Town Hall and the Harbour Bridge as his first subjects from our last Sydney trip. He enjoys sketching in a series that has a finite collection, almost mathematical in deciding.

BLOOM: How has your autism affected you?



Hanzhen Yap: I don’t know.

Parents: Hanzhen has been told he’s autistic but he is not able to grasp why he is different and how autism has affected him. However, even before he was told, he appeared to be conscious of being different. Often, when in public or during functions, we see him looking at his brother for cues on how to act. He takes our directions very seriously in public areas, knowing not to confuse others who do not know his condition. However, he lets his hair down in the company of people that he knows!


BLOOM: What advice would you give to other youth who have autism?


Hanzhen: Try and draw like I draw and… become successful!

Parents: Great one, Hanzhen!

BLOOM: What would you like to do in the future?


Hanzhen Yap: I want to go to university… to learn to draw better.

Parents: Upon completing his O-levels, Hanzhen hopes to get a placement at the reputable Nanyang Academy of Fine Arts in Singapore to further his art education at the tertiary level.






Friday, February 20, 2015

Every kid deserves a pair of jeans

By Megan Jones

In the summer of 2013, Mindy Scheier was faced with a problem. Her son Oliver, then nine, wanted to wear jeans to school.

Oliver, who has a rare form of muscular dystrophy, has trouble using buttons and zippers. He also wears leg braces, which don’t fit easily under restrictive fabrics like denim.

Mindy, who lives in Livingston, N.J., had a choice: she either had to tell her son he couldn’t wear the clothing he wanted, or send him to school without leg braces and risk that he might not be able to use the bathroom by himself.

“It was terrible,” she says. “I felt like I just didn’t know what the right thing to do was. Oliver views himself as a typical [child]. So he was completely confused as to why it was even a question whether he could wear jeans or not.”

In the end, Mindy let her son wear what he wanted. But the worry she felt as she sent him to school got her thinking about how limiting mainstream clothing was for children with disabilities. A fashion designer by trade, Mindy had adapted some of Oliver’s clothing in the past so that he could wear it comfortably. But the mom of three wondered how parents who didn’t have the sewing skills to modify off-the-shelf clothing managed to dress their kids with disabilities.

Then Mindy had a brainwave. Instead of thinking it was her responsibility as a parent to modify clothes that already existed, why didn’t she insist that companies create children’s wear that was adaptable in the first place?

With that idea in mind, Mindy, who in the past has worked for big names like Saks Fifth Avenue and Macy’s, decided to combine the two things she knew intimately about: clothing and disability.

Within a few months, she launched Runway of Dreams, a not-for-profit that aims to convince larger mainstream labels to produce adapted versions of current, fashionable clothes for children with disabilities. The company’s philosophy is simple: Kids deserve to wear whatever they want to wear. And it’s time for the fashion industry to step up and help them do it.

“We have plus-sized department and petite departments and maternity departments,” Mindy says. “And we have nothing for the differently abled community? It is so mind-boggling that this has not been done yet.”

Runway of Dreams isn’t the first company aimed at designing clothes specifically for kids with special needs. Other adapted clothing options exist, but they’re limited, often expensive and seldom trendy. Mindy hopes her project will ultimately give more people easy access to affordable clothes kids will actually want to wear.

Since she came up with the idea a year-and-a-half ago, Mindy has reached out to others to get a better sense of the range of clothing needs kids with disabilities have. She started with a large Facebook survey, which received answers from parents and children all over the world.

The survey revealed that people with disabilities struggled with three main things when it came to dressing. The first was fasteners: buttons, snaps and zippers seemed to be a problem for nearly everyone across the board. The second was the way clothing needed to be put on—kids with cerebral palsy or muscular dystrophy, for example, have low muscle tone, and can’t easily lift a sweater above their heads. The final issue was the ability to adjust the garment to fit—especially important for those with differently shaped bodies, and those with equipment like leg or back braces.

Using this information, Mindy designed a few prototypes and tested them with a group of high-school students and their parents at a school (see photo above). She partnered with Maura Horton, a Raleigh, N.C.-area woman whose company MagnaReady produces washable magnets that can be used in clothing.

They modified pieces with magnets—like a dress-shirt that opens along the back, allowing the wearer to slip their arms inside, and fastens easily.|

“It was one thing to talk to people but another to have them judge, feel, see the modifications that were made,” Mindy says.

Participants’ reactions confirmed for Mindy that Runway of Dreams was an important project. One boy with muscular dystrophy travelled an hour-and-a-half just to participate in the group. He told Mindy that he’d recently been accepted to Harvard, and that what he wanted most for his first day of university was to wear jeans like a typical freshman.

“Being able to wear what you want brings you personal confidence,” Mindy says.

“Differently abled kids are constantly being told, ‘You can’t play that,’ or ‘You can’t wear that.’ I think it will resonate that someone is saying, ‘You know what? You can actually. We’re going to make it happen.’”

So far, Runway of Dreams is in talks with one large clothing company, which Mindy hopes will lead to an official partnership. She’s also reaching out to other designers and manufacturers. Since adapted clothing caters to such an underserved market, she believes it’s in companies’ best interests to get involved.

“Forget about the feel good aspect of it,” she says. “There is a huge population of people out there that are ready and waiting for something like this to happen. They’ll spend their money on it.”

One day creating accessible clothing will be mandated, she predicts, and all companies will have to make a percentage of their clothing adaptable.

Until then, she’s pushing them to get involved. “As a mother, whether your kid has a disability or not, you know how hard it is not to have your child feel good about themselves,” she says. “I’m asking everybody to spread the word because we can make this happen together.”

At the very least, Mindy’s project has left her son (below) hopeful.

“Oliver and I were just interviewed on CNN,” Mindy says. “He ended the interview by saying, ‘I told my mum how lucky she is that I was born with muscular dystrophy. Because we wouldn’t be where we are right now if I didn’t have it!’”

To check out a great video on Mindy's work, or become more involved in the movement, visit
Runway of Dreams.  

 

Wednesday, February 18, 2015

Take a look, then look again


By Louise Kinross

Look at this illustration of an elephant. I couldn't stop. I kept seeing in the detail things that I hadn't initially seen.

This is one of my favourite sketches by Hanzhen Yap, a 16-year-old from Johor Bahru in Malaysia. Hanzhen's intricate drawings of animals, historical buildings and everyday objects like kettles have been shown in 27 art exhibitions.


Hanzhen has autism, and his parents taught him to speak and read by pairing words with thumbnail sketches that they drew together. As a young child they drew everything around the house.

"He draws primarily from photographs, even though he draws very much better if he has seen the object recently where, we believe, the image is still fresh in his mind," says his mother Yvonne.

I sent Hanzhen a list of questions about his art, his autism, and any advice he might have for other youth with disabilities. He's going to work on responses with his parents which we'll share in the next week or two.

Hanzhen just completed a commission for the Consul-General of Singapore in Johor Bahru.

I can't wait to share his thoughts on his drawing process. Stay tuned!