BLOOM media roundup

Girl advocate for disabled American Girl doll to write book Kickstarter

Last year Melissa Shang, then 10 (above), got almost 150,000 people to sign a petition asking American Girl to release a doll with a disability. The company hasn't. BOO! So Melissa, who has a form of muscular dystrophy, is moving on to write a book about a middle-schooler with a disability. You can also hear Melissa and her older sister Eva calling for more visibility for girls with disability in the media in this TEDx talk: Why girls with disabilities matter. Rock on sister!

Ode on a stethoscope The New Yorker

How poems and medicine fit together in medical journals. Great quote from a seasoned doctor at the end: 'When you get in the twilight of your career, relationships, connections—with patients, and connections with those who help you care for patients—matter as much as or more than the chart, the medical record, the lab tests,' LaCombe said.

Girl invents Hello Kitty IV backpack for chemo and transfusions The Huffington Post

Kylie Symonds, 11, invents a wearable, portable IV machine for kids receiving chemotherapy or transfusions so they don't have to bother pulling cumbersome IV poles around. 

Disabled girl types with nose, opens online store to sell apples Shanghaiist.com

A young woman in Yuncheng, Shanxi province has sold over 350 kilograms of apples from her village over the Internet, using her nose to type and her chin to manipulate the mouse.

We wouldn't accept actors 'blacking up' so why accept 'cripping up?' The Guardian

'When it comes to race, we believe it is wrong for the story of someone from a minority to be depicted by a member of the dominant group for mass entertainment. But we don’t grant disabled people the same right to self-representation.'

Harsh critics in public spaces New York Times Motherlode blog

Blogger David Perry writes about how parents who take kids with disability out in public face constant judgment and prejudice that is isolating.  

Trapped in his body for 12 years, man breaks free NPR

Martin Pistorius was a healthy 12-year-old until meningitis took his ability to move and speak. Doctors told his parents he was 'a vegetable' but years later Martin regained the ability to communicate and said he had been aware and understanding.

Teen invents snap-on underwear for people with disabilities The Huffington Post

A girl who had to wear a fixator on her leg which meant she couldn't easily slip her legs into undies designs cool underwear that you put on with snaps.

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Nick knew how to take the pain away

By Louise Kinross

When I first got to know Nick Joachimides (above centre), it was in his role as a nurse educator at Holland Bloorview.

Nick was part of a research study to address a growing body of literature that suggested pain was under-recognized and under-treated in children with disabilities. The study aimed to shift the focus from treating pain in our kids to preventing it.

This was of great personal interest to me because my son had just had a major hip and knee surgery that wasn't successful: the hardware put in his hip had pulled out of the bone, taking a chip with it, he was in unbearable pain, and he had to have the identical surgery a second time to correct it.

I was an emotional wreck when my son came to Holland Bloorview in a body cast following this second surgery.

But I had one huge advantage. Nick worked on the unit my son was on.

Nick was convinced that by proactively treating pain with medication before it spun out of control, it could be kept at bay. He was implementing a number of best practices that included pain assessment tools to track pain; anticipating and treating pain prior to therapy or procedures; making pain management the responsibility of the entire rehab team; using distraction and relaxation techniques; and educating families.

Nick was caring, calm and unflappable.

When my son's cast had to be cut off unexpectedly because his wounds continued to ooze, Nick was part of the team that supported my son in the treatment room pictured (in the photo above he is with a different client).

Children need to feel safe in their hospital rooms, so painful or anxiety-provoking procedures are done in a separate room at Holland Bloorview.

I expected cutting the cast off would be traumatic for my son. I was also concerned that it might result in the hardware pulling out of his hip again. "He can't take another surgery," I remember telling Nick, which was really my way of saying "I can't take another surgery!"

I was astounded when I came to the treatment room and found my son lying on a bed, completely relaxed, grinning. Nick and a number of nurses and child-life specialists were circled around him, as was the orthotist who was cutting off the cast.

Fibre-optic lights were draped over my son, blinking peacefully, and his favourite Star Wars movie played on a large-screen TV above. I hadn't asked for any of these things. Because staff had gotten to know my son, they knew he adored Star Wars. They had taken the time to think about what might soothe him and take his mind off the medical procedure.

There was only one person visibly stressed in the room: me. One of the child-life specialists suggested that it might be better for everyone if I went back to my office and they called me when the procedure was over. Ha ha! She was right.

When the cast was removed they found my son had pressure sores that needed to be treated. Nick is an expert in wound care and he always seemed to be able to change my son's dressings with a minimum of pain.

Something I learned when my son became an inpatient here is that nurses are the heart of the care we provide. They're the ones who are with you and your child for the most amount of time every day and night. They're the ones who problem-solve with you when your child's pain is bad. They're the ones who make handmade heating packs to soothe your child's aches. They're the ones who are there when everyone "leaves" for the weekend. They're the ones who give you a hug when you start to cry. They're the ones who make being in hospital bearable.

Two years ago I got to interview Nick about how he got into children's rehab. I was moved by a story he told about the deep connection he made with one inpatient boy on our complex-continuing care unit. "They want to have fun, they want to be treated like children," he said. "They need people here who can demedicalize the environment." One of the ways he did that was by concocting practical jokes with this boy that they'd play on other nurses. "We'd both laugh when we pulled off a good one," he recalled. 

In the last few years Nick moved out of frontline nursing and worked with people in and out of Holland Bloorview to make it a leader in patient safety and infection control. 

When I heard he was going to a new position at Bridgepoint Active Health Care I was so sad. Holland Bloorview and Nick went together. But then I learned he was returning to clinical care, as an advanced practice practitioner for wound care. I could picture the immense trust he would engender in the patients and families he was going to, the way he would work to take away their pain and put them at ease. And it totally made sense.

"Do you remember a nurse called Nick?" I asked my husband.

"Not really," he said.

"Come on," I said. "He helped Ben with his pressure sores."

"Oh him! Yes, he was very gentle and kind."

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'How poor are they who have not patience'

By Louise Kinross

Patience.

It's a quality that doesn't rank high in our competitive, consuming, instant-gratification culture. We want things, and we want them fast.

Some families reminded me recently of the importance of patience in raising children with disabilities.

The first was Pia Pearce, mother to Kevin Pearce, an American snowboarder expected to win gold at the 2010 Olympics until a crash nearly killed him, severely injuring his brain. Kevin was hospitalized and had to relearn everything—to swallow, walk and talk. He was unable to return to competition. It’s common for parents of children with traumatic brain injury to mourn the child they knew pre-injury.

“I didn’t see any value in going there,” Pia told me in an interview. Because of her experience raising her son David, who has Down syndrome, and two boys with dyslexia, “I had learned, over the course of time, a lot about patience and acceptance. Because I’ve had so much experience with accepting differences, my focus is on acceptance.”

That stuck with me and I wondered how it could apply to my experience raising my son with a rare genetic condition.

Last week I interviewed Joyce Scott, the twin sister of Judith Scott, a world-renowned fibre sculptor who's described in this New York Times piece as a “complex and brilliant artist and person.”

Judith—who had Down syndrome, was deaf and was institutionalized for over 30 years—didn’t find her gift till her mid 40s, when Joyce brought her to San Francisco and became her guardian. Joyce enrolled Judith in Creative Growth, a community art centre for adults with disabilities. At first Judith didn’t show any aptitude or interest, Joyce said. “It’s a place where they don’t teach art, they provide materials and allow people to explore them. Judy was there for about two years and she wasn’t liking drawing or painting or ceramics. We thought ‘Maybe this isn’t the right place for her.’”

One day Judith was sitting at a table where an artist was using textiles and “she took some of the materials—the threads and yarns—and found some sticks and she wrapped them and made this amazing sculpture that looked a bit like a Native American worship symbol and everyone was astounded,” Joyce recalled. “Once she started fibre sculpture, you could not get her to stop. Sometimes her fingers would bleed because she worked so many hours and so hard on it.”

Judith’s work, which combines fibre and found objects like an umbrella, branch, bicycle wheels and plastic tubing, has been shown in museums around the globe. Ten years after her death, “Bound and Unbound” is a 60-piece exhibit at the Brooklyn Museum in New York until the end of March.

Judith’s story made me think about how impatient we typically are—as families and professionals—when exposing children or adults with disabilities to activities or work. How often do we encourage a person to try something like art—on a daily basis, for two years, as Judith was—when the person doesn't show any affinity for it? Rarely. We're more likely to assume the person isn't capable and insist that they move on. I think Judith's story is exceptional because without her unhurried time at Creative Growth, her talent would have remained hidden.

“I feel so strongly that people who may look different or appear to be somehow ‘less than’ or who are labelled ‘less than,’ have great giftedness and great potential,” Joyce said. “I see Judy as a kind of a model for that. Who would have thought that someone labelled as profoundly retarded and deaf and institutionalized for most of her life had this amazing greatness within her as an artist? What she needed was an opportunity, a place, and respect.”

I think the key word is respect. Because Joyce respected her sister, she continued to support her participation in the art program even when Judith didn’t appear to be making gains. When you respect someone, you give them time. You give them latitude. You believe they have worth. You value them as they are. 

I saw the benefits of patience in my own life recently. My son has been working at two high-school work placements. He has significant disabilities and a lot of growing and maturing to do. So this has not been without bumps. I reached out by email to the owner of one of the businesses to ask how things were going. 

In his response, the owner began by describing our son as “an awesome individual.” He went on to say that they had seen “slow but real improvements” in our son's work, behaviour, focus and attention. He addressed one of our son's challenges and his need to improve. He finished off by saying that our son was an asset to the team. 

I read this message to my husband and we teared up. We agreed that we had never had a message like this about our son before. Usually the feedback we receive focuses on the negative. And that invariably leads us to question our own weaknesses as parents.

What I took from this business owner's message was that my son was being given time to develop and improve at his work. They were being extraordinarily patient with him. Despite his disabilities, they saw his value. This made my husband and I feel more hopeful about our son and more motivated to support him and stay positive about his experiences.

It made me wonder why we don't talk more about the benefits of patience in parenting kids with disabilities and the intrinsic self-worth of children (distinct from ability). Is it possible that we're missing something in our focus on goals and outcomes and hurrying people along in their development? Are we too quick to judge people incapable? And resign them to the margins? Maybe we could all benefit from more patience.

The photo is of an unnamed sculpture from Judith Scott's Bound and Unbound exhibit at the Brooklyn Museum. Please click on it to see the full image. The headline above is a quote from Shakespeare's Othello. Look for a more in-depth interview with Joyce Scott in the winter issue of BLOOM next month.

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Israeli military opens training to disabled youth

By Louise Kinross

Special in Uniform is a world-first: a four-year training program that prepares youth with disabilities to serve in the Israeli Defence Forces (IDF) alongside their peers. No other nation's military trains people with disabilities for service. A decade ago IDF Lt.-Col Ariel Almog argued it was time to include youth with special needs and began “one by one to take youngsters and train them,” says Yossi Kahana, Special in Uniform co-founder. Today the program, funded by private donors and the Israeli government, works with 200 adults with a variety of intellectual and physical disabilities and plans to expand to military bases across Israel.

BLOOM: What is the purpose of Special in Uniform?

Yossi Kahana:  In Israel, army service is the gateway to successful integration into society and the workforce. The entire population joins what is known as the people’s army at age 18, after Grade 12, for two to three years. So siblings, friends and neighbours go to the army and youth with special needs stay home. They receive a letter saying you're not eligible and you're released from service. A number of years ago the commander Lt.-Col Ariel Almog decided that it's time to include people with special needs because they add great ability and can contribute. We wanted to open the door to them. We did a pilot of 20 men and women and it became an official program and now we're launching it nationally.

BLOOM: Who can participate?

Yossi Kahana: The age range is 18 to 24. They have a variety of physical and mental disabilities. Some have physical challenges and some have autism or Down syndrome. We work with their special-education school so in their last year they begin coming one day and then two days a week to our program. We have an apartment where they're trained to live full-time, first a couple of days a month and then for longer periods of time. Parents of children with special needs tend to protect their children so they don't have the same opportunities to do things on their own—to go to the mall and shop or communicate with the public or learn how to be responsible. They don't know how to act in a public place. We're giving them an education they're not getting in special-ed school or at home. They start as volunteers and along the way most will become [paid] soldiers.

BLOOM: Are there any disabilities you can't accommodate for?

Yossi Kahana: It's how they perform with the disability. They have to have a certain level of communication and understanding and learn how to behave among others and work on their own. They have to be able to function well in the community. Our job is to train them and coach them and push them.

BLOOM: In a video posted online we see participants going to live on the base for a week-long basic training.

Yossi Kahana: That's the last stage of training.

BLOOM: What are some of the jobs they do? In the video some were packaging masks?

Yossi Kahana: Each citizen gets a gas mask and batteries and medicine in a package. So some of them are in charge of putting that together. Others are taking computers that aren't working apart—for parts—or working in the kitchen or office. Each is assigned to a meaningful job and they are coming in each morning and doing their job. There is a program for soldiers with autism working in intelligence. They are analyzing what comes in on satellite maps from different locations and they can find a needle in a haystack. They have a visual ability that is 10 times more accurate than the regular person and much faster.

BLOOM: What kind of support staff do you have to make this possible?

Yossi Kahana: We have therapists, social workers and school special-ed directors, principals and teachers working with us. It's a big team and there's a lot of work behind each person that becomes a soldier.

BLOOM: It sounds very expensive.

Yossi Kahana: At the end of the day it's about funding. Initially we had philanthropists in Israel supporting us, and now we receive some funding from the government. We're trying to educate the government and communities around the world in order to raise more funds.

BLOOM: What changes do you see in participants?

Yossi Kahana: When they're getting the uniform you see the smile and the joy and the self-esteem is rising right away. This is something like magic. Every day on the base they are having so much dignity. They start the program thinking they can't do anything. Their parents have protected them and they didn't get the challenge or chance to go out and try to live on their own. We see an increase in self-esteem and they do what they thought they couldn't do. They are doing a job, they know how to work, what the responsibility is. Just imagine when the family and neighbours see the person come home in uniform. It changes the environment. For the parents there is so much joy and pride.

BLOOM: I just read an article in the Jerusalem Post about a survey that found that 40 per cent of Israelis don't want their child to go to school with a child with disability. It seems there's still quite a bit of stigma there. How do you make the army a welcoming place?

Yossi Kahana: Israel is a young country and there's a lot more work to be done in terms of acceptance and inclusion. But before our people with special needs come, the commander gathers all the soldiers and educates them about these new soldiers: what they need, what the challenge is. We're preparing them. And we see some interesting things. One of our commanders told me that when she has a regular soldier who's a problem—who wants to go home or is not coming in on time—she matches this soldier with one of ours, and she sees an incredible increase in morale. Now that soldier has a responsibility to someone who has a disability and feels ashamed to run home when these guys are trying so hard. Hopefully our soldiers' interactions with soldiers with special needs will lead to more tolerance and acceptance in the real world.

In the short run this program is making our soldiers more sensitive and tolerant to people who are a little different than them. In the long run, we [increase] the value of the army because no army in the world is accepting people with special needs and disabilities. Our soldiers are helping to build this army and they are sharing the same dining room, eating lunch together, and accepting our soldiers with special needs as part of them. It's a big change. We hope that in future every base in the country that has jobs will accept people with special needs. It will be huge.

BLOOM: What difference will Special in Uniform make to these people's futures?

Yossi Kahana: If we look at the big picture, if you serve in the army many doors are open to you. That's true for regular people and it's even more true for people with special needs who have difficulty getting a job in the community and being part of society. For them, the army is a golden gate to the community.

BLOOM: How did you get involved in the program?

Yossi Kahana: I'm the father of a child with special needs. My older son is serving in the army and my younger son, Gershon, who is nine years old, is autistic. My dream is that my younger son will one day join his brother in the army. So I helped to put together the Special in Uniform program. I co-founded the project and created the plan for it and advocate for it.

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Would your kid like to do this?

Wheel Dance is a Canadian non-profit hoping to bring ballroom dancing classes to children with disabilities.

“It’s a great physical workout, it’s a social activity, it’s fun and it’s a great confidence booster,” says Dr. Iris Kulbatski, executive director of Wheel Dance.

The group currently offers subsidized beginner and advanced ballroom classes to adults with disabilities and a standing partner at an accessible studio in York Region. They’re looking for Toronto area dance studios, rehab facilities, schools or community centres to partner with to offer the activity to children.

Children who use wheelchairs can learn to dance with a parent, sibling or volunteer from Wheel Dance.

Iris would love to hear from parents who’d like to get their kids involved. You can e-mail her at wheeldance@outlook.com.

The photo above is taken from the International Paralympic Committee's Wheelchair Dance Sport Facebook page.

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BLOOM media roundup

Vulgar poster campaign sparks Human Rights Tribunal The Toronto Star

Anonymous posters displayed in a Scarborough co-op targeted residents with disabilities. In one case,  a 9-year-old boy with cerebral palsy was described as "a retarded monkey" who "should have been put down when he was born." A group of residents, including the boy's mother, are having their case heard at the Ontario Human Rights Tribunal today.

Song and daughter inspire plans to celebrate people with disabilities The New York Times

Inspired by his daughter, who has Prader-Willi Syndrome, New York jazz pianist Mike LeDonne is organizing an annual disability pride day. The first Disability Pride NYC parade takes place this July.

New #IMREADY campaign pushes for child models with disabilities to be featured in media ABC News

Parent-founded Changing the Face of Beauty is challenging retailers to become part of their #15in2015 campaign by using kids with disabilities in their advertising.

"A living hell" for slaves on remote South Korean island salt farms CBS News

Hundreds of people with disabilities work unpaid 18-hour days on salt farms on remote South Korean islands according to an Associated Press investigation. And although 50 island farm owners and regional job brokers were indicted, no local police or officials have faced punishment, despite multiple interviews showing some knew about the slaves.

An oasis of care for people with intellectual disabilities The New York Times

A sobering story about American parents trying to find health-care for adults with complex medical needs, including intellectual disability. The Lee Specialty Clinic in Louisville, Kentucky is one of the few free-standing facilities designed to provide medical and dental treatment to this population.

Majority of autism increase due to diagnostic changes, finds new study Forbes

Almost two thirds of the increase in autistic Danish children results from how autism is diagnosed and tracked, found a new study in JAMA Pediatrics, lending more support to the idea that the apparent rise in autism rates, or at least most of it, is unlikely to be "real."

Innovative wheelchair technology is helping people stand up The Globe and Mail

An innovative wheelchair design by Chilean physiotherapists helps patients move from a seated to an upright position, allowing them to see the world from a different perspective.

Did we miss a good story? Post a link in the comments! Thanks, Louise

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Looking up

A year-and-a-half ago Sue Robins (with son Aaron) wrote what's become our most read post: The invisible mom. It was about how moms of kids with disabilities can face the same social exclusion their kids face. Now Sue gives us an update on the steps she's taking to make her family be seen and understood at their local school. Thanks Sue! Louise

By Sue Robins

When I wrote The invisible mom last year, it hit a sensitive nerve with parents. Many wrote to say they too had felt the sting of being left out of parent circles at their child's school. They too felt like invisible moms.

There's still a gaggle of moms who stand in the playground at my son Aaron's school, and I still haven’t been welcomed into their circle. 

I've thought a lot about why I've been left out, and how I may contribute to my own invisibility. For example, in the past I always walked through this parent group with my head down. As a first step, I vowed to look up to see if I could make eye contact with anyone and initiate a smile. So far I haven't connected with any of the moms, which is disheartening.

However, I've realized that if I want change to happen, I have to lead it myself. Here are six things I've been working on in the past year to make myself more visible at my son's school.

1. I presented our story

I was fortunate to be asked to speak last March at a Parent Partnership Group at our school on the topic of What Inclusion Means to Me. It was the first time that I stood up to speak to other parents and teachers about how it feels to have a child with differences. I tried to be honest and authentic. I public speak for a living, but still, I was SO nervous.

Not everybody liked what I had to say. I had a heckler at the back, a mom who felt that kids like mine took away from her kids' time with their teachers. That was challenging. But at least I had the opportunity to share my story with a larger group. I started to become more visible, at least to the small audience at the meeting.

2. I reached out to other parents who had kids with differences

The Assistant Principal who asked me to speak on inclusion started to informally introduce me in the hallway to other moms who have kids with differences. My son Aaron is the only kid in the school who has a visible disability. In a setting of 900 children, it's impossible to identify who's the parent of a kid with autism or an invisible disability without some assistance. Turns out there are 27 students who have support in the classroom. I wasn’t alone!

3. We began a Family Inclusion Group

I discovered that I wasn’t the only one struggling with IPPs and calls from the school! Five of us moms started talking to each other in the playground about starting an inclusion group in partnership with the school. This would be a group of families with kids with diverse learning needs and anybody else interested in inclusion and building a compassionate school community. Some people in our disability community were not supportive of our inclusion group, and accused me of starting a segregated group, but I ignored them and soldiered on. We had to start somewhere.

We started to meet for coffee at our local recreation centre. We met with the school's new Assistant Principal to plan a formal meeting. We only had four parents attend the first meeting, but our school trustee showed up! This was exciting to us. We wrote a Terms of Reference, and worked hard to partner with the school. As an added bonus, a mom joined our planning group who has typically developing kids, but who really believes in supporting us. That almost made me weep. We are not alone, even in our wider community. People do care about our kids. We just have to be given opportunities to find them.

4. We had regular coffee meetings

This fall our little group regularly met for coffee to vent, support each other, and come up with constructive suggestions to improve things at our school. We grew close, and survived a rocky meeting with the school about cuts to the educational assistant budget. We’ve had a setback, relationship-wise, with the school, but we aren’t giving up.

5. We started representing at Parent Council

We committed to showing up at every Parent Council meeting. Even better, we have a standing agenda item to give an update about what we're doing. The first time we had to present to this bigger parent group I was quaking in my boots. What was interesting is that the other parents said they wanted to know how to talk to their children about our kids and differences. They said they didn't know where to start. At the last meeting we shared an essay I wrote with some tips: How to be part of Aaron’s village. I haven't noticed a difference in how parents interact with me. However, last month as Aaron was walking to school one of the Parent Council moms shouted out to him: "HI AARON."  This seemingly minor happening is a major breakthrough for us.

6. I volunteered for more field trips and Hot Lunch

If I want other parents to accept Aaron and me, I have to do my part to be more visible. So I’ve made an effort to volunteer more at the school. That way at least the kids in his class get to know me as Aaron’s mom. I’m a true introvert, and volunteering for Hot Lunch with the other moms is a BIG stretch for me, but my first shift is in January. Wish me luck.

In December I met some of the moms from our inclusion group at a local fancy restaurant for a holiday lunch. We talked about things other than school, like where we went to university, our Christmas traditions, our other kids. We are getting to know each other as people, too, not just as "special needs" moms. At the end, we all gave each other a hug goodbye.

I wish that the world was accepting of my son and our family, but that’s not our reality. I know from my paid work life that good change management strategy means that you celebrate the 20 per cent of people who get it (our inclusion group), and focus on the 60 per cent who are neutral or not engaged (like our Parent Council). The other 20 per cent, who don’t get us, like the heckler at my presentation? Forget about them. They aren’t worth your time or energy (Believe me, this is a tough lesson to learn, and I certainly don’t practise this philosophy every day).

Because of our inclusion group, us moms are not alone. We greet each other in the hall. We no longer stand separately in the playground after school. We have found each other. We vow not to exclude others as they have excluded us. We are open to anybody who wants to join us. We listen to each other, root for each other, and our kids are slowly getting to know each other too. This is awesome. Aaron now knows the names of the inclusion moms' kids, and they greet each other and high-five in the hall. He’s building his own community too.

Even when things aren’t okay, they will be okay because we have found each other. Here’s to building safe spaces, like BLOOM, where we can support each other and share information. I truly believe in my heart that together we are stronger.

Please share any strategies here that you've tried to promote your family's inclusion at your school.

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