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Slip slidin' away

By Louise Kinross

Yikes.

The Canadian winter is treacherous for youth who use wheelchairs or walkers finds a Holland Bloorview study published in Disability and Rehabilitation last month.

Researchers interviewed 12 youth aged 15 to 22 who use walkers and power or manual wheelchairs about the challenges they face getting around in winter.

Their comments paint a stark picture:

“In the slush and snow my walker seizes up” explains one participant, who notes that she falls regularly and has broken her leg “more than once.”

From a power wheelchair user: “With public transit sometimes their ramps don’t work…because it’s cold so the hydraulics don’t work…So even if the bus comes, the ramp doesn’t work. So you wait for the next bus. I have times where I waited for four buses.”

Snow-blocked pathways and sidewalks force participants onto the road. One was hit by a car at an intersection when she had to drive on the road because the sidewalk wasn’t plowed.


Most youth can't wear gloves because it impedes their ability to use their walker or wheelchair—so frostbite is a common problem.

One recounted getting stuck on patches of ice and having to wait to ask someone for assistance or call the police. Another was choked when her coat became caught under a wheel.

These extreme conditions led many youth to fear and avoid going out, which made them feel lonely and isolated.

When they did go out, they had to depend more on parents or others to ensure they were safe, whereas in the summer they could go independently.

Participants suggested strategies to help others with mobility devices cope with winter. These included having equipment more frequently maintained to keep it in top working order; paying more attention to conditions of paths and sidewalks and avoiding problem areas; asking a pedestrian about whether a route was hazardous; giving yourself more time to get somewhere; and putting flags and lights on wheelchairs to improve their visibility. To prevent isolation and depression, some participants kept busy in activities like adapted winter or indoor sports. Girls were less likely to participate in adapted sports than boys.

Because heavy winter coats were hard for youth to put on and limited their movement, they suggested wearing layers with a thinner winter coat. Some wore anti-slip boots.

Researchers found that youth with walkers had more serious challenges in the winter than those with wheelchairs, due to smaller wheels on their devices.

Clinicians must ensure youth get proper training on maneuvering their wheelchair or walker, and enlisting mentors may be helpful, researchers said. Expanding clinic times should be considered to recognize the extra time it takes to get to appointments and to leave enough time to assess clients for signs of depression. A winter survival guide could include tips for spotting hazards at street crossings, maintaining wheelchairs, dressing appropriately and recognizing signs of frostbite, as well as a list of adapted local activities.   

The big picture

By Sandra Joy Stein

The note announcing picture day came home in my son’s school folder.

“Wow,” I thought. “Look how far we’ve come.” The fact that my son attends school at all is quite an accomplishment. It wasn’t until three years after the onset of his autoimmune encephalitis—where the immune system attacks the brain—that we received medical clearance for him to participate in an educational program outside of hospital or home. After considerable work to get all the necessary systems in place, for the first time since his illness he was now attending a barrier-free neighbourhood school, accompanied at all times by a nurse.

I was occasionally thrown by how immediately his entry to school brought many ordinary experiences to our extraordinary lives. He had homework; I received emails from the PTA; I signed permission slips for fieldtrips. And now, it was picture day.

I picked out an outfit, lamenting that on that particular day I did not have the requisite time (or patience) to engage him in the choice. I sent a back-up outfit, should vomit or drool sully my original selection. As the wheelchair lift was raising him onto the bus, I made a request to his nurse. I had recently seen class pictures in which a group of currently able-bodied children stood clustered in the centre of bleachers with the one child who uses a wheelchair positioned to the side of the bleachers, separate from the class. 

I find these images to be unnecessarily isolating to children who work tirelessly to participate in a world that has not been designed for them. I suggested that if the whole class were posed in such a way, with my son off to the side, to please ask for an alternative arrangement. She agreed to raise the issue should it come up.

Mid-day I received a text message from the nurse informing me that for the class picture they took my son out of his wheelchair and his teacher supported his head and torso so he could sit with the rest of the children. That made sense to me since they do take him out of the chair to sit with the other children regularly and his head and trunk control have improved enough over time that with a little input from an adult, he can sit in some of the classroom chairs safely. In the class picture, he would be right beside his peers, a full member of the classroom community.

But then came a second text message: “Solo pic was in his wheelchair but they’re gonna photoshop his headrest so you can’t see it.” I felt a lump in my throat. I had asked that he not be isolated from his peers in the class photo, not that his individual shot omit all traces of his illness. Who thought we would not want to see the headrest of the chair that has become the means for our son to move around in the world? I thought to write back immediately saying: “He uses a wheelchair. It’s fine. Keep it in the pic.” But I often find that taking time after my initial visceral reactions leads to better outcomes. So I waited for my husband to come home to discuss it with him.

My son loves having his picture taken. At times, when his body is behaving in ways that seem beyond his control, I hold up my cell phone to snap a selfie of the two of us. Upon seeing our image on my phone he often focuses, calms, and mugs for the camera. It’s a phenomenon I cannot begin to understand, so I don’t try. I have several pictures of the two of us, looking right at the camera, smiling together as if someone just told us to say cheese. When I post these pictures on Facebook, I comment that they are from the “If you didn’t know you wouldn’t know” files because there is not a visible trace of the three years my son has been battling his disease. 

I am admittedly more likely to post these pictures to Facebook than the ones where the visual effects of the disease—the deviated gaze, the open, drooling mouth, the protruding tongue, the asymmetrical facial expressions, the blank stares—are visible. I have justified this tendency by looking at the postings of friends’ kids whose childhoods have thus far not included disabling diseases. We all post what we believe to be the most attractive shots of our kids, the ones where they look happy and loving and impish and proud…right?

But the thought of any part of his current state being photoshoppedout of a professionally taken picture disturbed me. I told my husband the story and he had the same reaction. Our son used to walk on his own. He does not now. He may or may not walk again someday. In the meantime, there is no need to photoshop any aspect of his current state out of visual existence. 

We wouldn’t want the photographers to airbrush in a smile that his facial muscles didn’t authentically produce or paint the missing teeth back into his mouth. In fact, we wouldn’t want them to change a thing about his picture, as it is a snapshot of his incredible life as it is today. There is nothing about the physical imagery of his journey that brings us shame. Quite the opposite, he is a powerful testament to resilience in every image we capture of him with or without the wheelchair, the drool, and the varying facial asymmetries. He is our son and we stand in awe of his beauty.

I texted the nurse that night asking if she happened to get the photographer’s contact information so we could communicate that we do not want any photoshopping of our son’s picture. She informed me that they would be back to the school the following day and she would let them know.

The next day I received a text from her: “Spoke to photographer. He is leaving headrest in.”

I noted how the attention I was able to give to this issue served as yet another indication of just how far we had come. I was not at this moment suctioning the trache he used to have. I wasn’t watching the alarming ICU monitor while a medical team ran in to resuscitate him. I was not making an impossibly hard decision about medications or surgeries. I was asking that the wheelchair headrest captured in my son’s school picture not be photoshopped out, the health equivalent of a first-world problem.

Sandra Joy Stein is an education and leadership consultant, writer and poet who lives in New York City.

The 'unwelcome' mat

By Steve Kean

I love Toronto, I really do. But sometimes I just don’t feel the love in return.

A few weeks ago was one of them. I was at St. Lawrence Market getting supplies for dinner with my wife and a friend when my favourite cheese guy told us that he was leaving to manage a new restaurant in the neighbourhood. But the new hot-spot-in-the-making—in a historic building—won't be wheelchair accessible, he said, so I won't be able to check it out.

I have spina bifida and use a wheelchair.

I've been inside 400-year-old buildings in the U.S. that have been retrofitted, so I don’t buy the “well, it’s a historic building” argument anymore.

In 1967 my parents were supposed to be rejoicing in the birth of their first child. Instead, they watched helplessly as concerned doctors and nurses rushed to save my new life. Since that fateful day I've had over 15 surgeries and probably consumed more than $100,000 in health-care dollars. A system of people, most who've never met me, has expended substantial resources to keep me alive.

So why then is it that the system that valued me so highly when I was born doesn’t deem me worthy of having an accessible environment? Access means I can contribute and live a full life.

Too often, our health-care, businesses and city attractions and amenities seem to work against people with disabilities and their families.

Is it because we're not cute little babies anymore? Do I not matter because I'm a grown up—sometimes smelly, sometimes scruffy? Does the government believe that I should take care of all my needs just like any other adult?

Well, I can take care of most of them. I do a job, two in fact. I help to pay a mortgage and even clean the place. And, I cook. In my own home, designed from the floor plans to meet my needs and those of my wife, everything works. Our little box in the sky is my sanctuary. There I feel welcome. But life is lived outside too, and that’s the problem.

Sometimes as I wheel around Toronto I notice every barrier that society has put up to make me and other people with disabilities feel unwelcome.

I count every step. Every staircase. Every door without an automatic opener. Then there's the insensitive jerk who luxuriates in the comfort of the oversized, accessible public bathroom stall as I wait, trying not to piss my pants.

Usually I am 'grace under pressure.' But occasionally I come apart. I just snap. By the time I get home I'm raw. I need a hug. I need to vent.

There, in my soft place to land, I feel the warmth and love of my wife's hug. She listens quietly and intently as I recount my day. Sometimes I scare her: “Why did they bother to keep me alive and healthy only to throw me out into a world that doesn't appear to want me?” I'll say.

Businesses see accessibility as an added expense and don’t see the value. Many employers see a wheelchair or some other difference and don’t see the skills and abilities of a person. They have to be shamed or worse, forced by the law, into making people with disabilities part of the equation.

I've thought a lot about how I can cope better in a city that makes me feel like a burdensome afterthought, instead of an integral part. Maybe some of my ideas can help youth with disabilities and their families.

First, seek out that hug. Family and friends are on your side and we all need allies when we leave our sanctuaries and go after what life has to offer. Once your spirit is bolstered and a little less raw and raging, look carefully at the particular barriers that are getting in your—or your child's—way.

Who’s directly responsible for a barrier? Who can help you take it down? Try talking to them. It might just get fixed and you’ve helped not only you, but everyone with a disability who comes after you.

Some walls that get thrown up in front of us can’t easily be torn down and so all we can do is try to work the problem. Speak to someone on the ground, maybe the store manager. If that doesn’t do it, work your way up the line.

Toronto hasn’t put out the welcome mat for people with disabilities. Will it ever?

I can’t wait. Time is moving forward and limited. I am squeezing every ounce of life out of my years, to borrow from a cliché. See the golden light first thing in the morning. Take a picture in your mind or with your camera or phone. But see it. Feel it. Notice everything you can.

When the things you can’t access get under your skin, ask for that hug and then fight just a little for change. Other people will notice. The next person with a disability will be able to spend more time here enjoying life, and less time struggling and feeling excluded, thanks to you. Maybe they'll even feel welcome in Toronto, like they belong.

Steve Kean works three days a week as programs and services coordinator at The Spina Bifida and Hydrocephalus Association of Ontario and two days a week as Steve Kean Photographer, doing commercial photography. Visit if you are a foodie!

Imagine...a doll with pink hearing aids!






















A fuscia pink wheelchair and hearing aids are part of a new American Girl line of accessories that includes purple sunglasses, earrings in the shape of pets and a flower-power purse.

Brilliant!

But after noting that these items allow kids with disabilities to see themselves in their toys, and help normalize differences for all children, Jezebel writer Dodai Stewart questions whether the company isn't focusing too much on "ultra-customization" -- instead of allowing girls to imagine themselves in a different time and culture.

"Does it put too much emphasis on the individual?" Stewart writes. "Is it all connected to this new selfishness, the kind of parenting that insists every child is a special snowflake, worthy of praise just for existing?

Huh?!! wrote Ellen at Love That Max this morning, which is where I heard about the story.

Stewart continues: "It seems like, with the original history-oriented American Girl Dolls, the doll was a time-machine friend, the book taught a lesson, and you didn't have to be black to learn from Addy, the girl who escapes slavery during the Civil War."

Yup, that makes sense.

But Stewart then questions whether the custom dolls mean "there's less interest in exploring different cultures."

Whoa!

News flash: Disability is a culture, an identity, a minority group that is devalued. Why does Stewart assume that only a girl who wears hearing aids or uses a wheelchair is going to purchase these accessories?

What about the girl who hears fine but want to imagine, through her doll, what it's like to wear pink hearing aids and speak with her hands and her mouth?

Isn't that the same as pretending you're the girl escaping slavery in the Civil War?

How is it any different?

For the first time millions of little girls (and boys) are going to be able to use their play in a way that opens up their minds to greater diversity.

Every child is a snowflake, and the more we encourage kids to create stories and play about all variations of those intricately-patterned crystals, the better. There isn't anything selfish about that.