a love letter to the one i work to forget

Last week we ran a poem called thoughts that live in the hole of my brain by 17-year-old Lexin Zhang. “When I was young, I thought about my disability as being a literal hole in my brain,” says Lexin (above), who has cerebral palsy. Following is a sequel poem Lexin wrote. At the end, she explains more about why she wrote this piece.

a love letter to the one i work to forget (cp)
By Lexin Zhang

The moment I took my first gasping breath
You imprinted onto my mind
And you haven’t left me since
Every one of my actions are wrapped up in your fingerprints

In the world we were born into
People were trying to save me from you immediately
Therapy attempted to have me forget the feeling of you in my bones
But we were born to be together
For the rest of our lives
And no one else’s opinion really matters
(not even mine)

In elementary school, I was stopped in the hall by a teacher I’d known for a while
He said ‘hey, you look like you’re walking better, keep it up’
I’d hear it from doctors—family members too
And I couldn’t help but smile
Every single praise I got in spite of you
Buried you deeper into a hole
I was trying to muffle,
To snuff you dormant
So you’d be easier to cuddle
I tried to love you, but I couldn’t—
At least, not properly

Despite the needles
My mouth still struggles around your name
Your presence soaks my tongue, tinted in your tone
I never really had agency over my words anyways
My mouth still morphs, shapeless, to fit with lips it never got to kiss

I try not to look at pictures
Because we always seem so stiff, like we painfully don’t fit

They say that love isn’t gazing at each other
But rather looking outward, together
In the same direction
We never did that—
Too busy analyzing body complications
Trying not to fall too far away from the ground
Stepping over and on each other’s feet

We’re so close and you’re so unique
That sometimes, when I introduce myself
All people see is you, and not me
Sometimes, I too lose myself in the vast landscape of you

But we were born to be together
For the rest of our lives
And you’re determined to stay by my side
Convinced that we don’t need to hurt all the time

I think I am writing this to let you know
That I am trying to love you
Love the jagged lines and silhouettes that stretch out from our limbs
Our small shaky hands spread out, straining impossibly wide
Eager to prove just how much they can catch
The twist and curl of toes and wrists and fingers
Latching at nothing in particular
Love the turns and churns of neck and face to form blobby cracked words
Love how our sound has to rumble through the throat to burst into clumsy existence

I’m trying to love what we sculpt
Every bone protrusion is a new mountain in the landscape
Each elongation is a paint stroke in the sky
Tense hard muscles bloom out rolling hills
I just have to trust that it’s quite the view if you find the right window sill

I caused us pain birthed from both dissection and neglect
I need to listen more often
You’ve hurt me too but
In truth, you make me a better person
More understanding, hardworking,
More clear of my values
Isn’t that what a good relationship is supposed to do?

I worked to forget you, drown you, even
I’m working to love you, and not feel so threatened

Lexin

___________________


BLOOM: Why did you write this poem and how does it relate to the first?

Lexin Zhang: This poem was me trying to reconcile with my disability and all the negative thoughts I had towards it. I wrote the first poem for school, it was like a chance to purge my recurring thoughts. This poem came when my social worker suggested writing an alternate narrative. The poem is a step forward. It’s me growing and evolving and recognizing that the thoughts I had before weren’t necessarily healthy thoughts.

Throughout the poem, however, it’s clear that it isn’t solely positive. There’s a push and pull between dislike and love. Even as I was writing it, it was hard trying to love my disability. I’m admitting that I’m not treating it properly and that, in turn, means I’m not treating myself properly.

Personifying a part of yourself that you’re conflicted with is common, at least from the poetry I’ve experienced. I made it sound like I was speaking about a soul mate, someone I was trying to love, and in a way I was. Honestly, I liked the analogy; it worked in so many ways. Personally, it made it easier for me to engage with my disability.

BLOOM: The poem really speaks to anyone who struggles with parts of themselves.

Lexin Zhang: Ultimately, it’s about my relationship to my physical appearance. Regardless of disability, everybody has something about themselves that they don’t fully embrace at first. It’s kind of like that battle to try to love every part of yourself. Self love, I feel, is something we learn to do. It’s never perfect. There are days when it’s harder than others. Everyone tries to be better—this is my way of doing it.

BLOOM: You just finished the Youth@Work program at Holland Bloorview. This is a summer program where you do work placements in the hospital, as well as attend workshops and meet with a job coach. You said Youth@Work influenced how you feel about your disability.

Lexin Zhang: Yes. After doing Youth@Work I feel I’ve reconciled even more with my disability and, I don’t know another way to phrase it, but I’m not as ashamed of it in a way. Youth@Work made me realize I could present myself with a disability and it wasn’t anything I had to hold back. As I say in this poem, I wasn’t trying to muffle it. I wasn’t trying to make it quiet and not noticeable.

BLOOM: What was it about the program that led you to feel differently?

Lexin Zhang: The environment is safe and it feels like I can do things and be confident with who I am—every part, not just selected sections. I can push forward who I am as a whole, instead of just the parts I’m okay with, [while] blocking the parts I feel are negative.

The staff I worked with gave me a sense of ease and safety. I can’t even remember how I was before this. I don’t know if it’s just because when I’m here I feel more confident about myself, but I hope that transfers to the rest of my life.

BLOOM: So you think there will be a long-term impact?

Lexin Zhang: I think this will change how I view certain things forever. It’s a weird feeling to know you’re in a moment of vital change, in regards to who you are as a person.

When you’re surrounded with able-bodied people who are working so hard to achieve in school, you forget that it’s okay to be disabled or different. I’m trying so hard to line up with them, that I kind of forget that it’s okay to not be with them at the same level.

Being surrounded with people with different abilities at Youth@Work, you remember that you don’t need to be doing the exact same things as everyone else. Youth@Work reminded me that it’s okay to be disabled in every sense of the term, and it was an odd epiphany, a pivotal moment in my mind.

I know this will change the way I act or perceive myself in relation to society or other people. I won’t be able to fully grasp how the experience has affected me until I’ve seen all of it come to fruition later on in life.

Even though this poem wasn’t written too long ago, I feel like the way I feel now is different. I’m really thankful for that.

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End the stigma

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Dear Everybody: It's time to end stigma

By Louise Kinross

Check out this TV ad in Holland Bloorview's new anti-stigma campaign, Dear Everybody, which launches today.

Dear Everybody is an open letter from children and youth with disabilities, and their families, that pushes readers to confront their own biases about disability and human value.

The letter begins: "Every line of our letter helps people understand our lives, puts a little information into our world and takes a little stigma out of it."

Some of the letter's points include:

• Not everyone with a disability looks like they have a disability.
• Just because someone doesn't do something the way most people do it, doesn't mean they can't do it.
• Talking to someone with a disability like they're a baby is rude unless they're a baby.
• Just because someone doesn't speak the way you do, doesn't mean they don't have a lot to say.
• If being around someone with a disability makes you feel uncomfortable, you aren't around someone with a disability enough.

Share our letter with your colleagues and friends.

In addition to donated ads on TV and radio, and in transit shelters, restaurants and online, please visit our website, www.DearEverybody.ca. It brings together personal stories, resources, videos and ways for people to get involved. You can also read our position paper that defines stigma and its impact, and includes key recommendations. Become part of our social media campaign by using the hashtag #DearEverybody.

Finally, come visit our installation at The Eaton Centre from August 28 to September 2 to hear messages from kids and youth with disabilities. Go to Level 1 of the Eaton Centre in the open area near The Gap, in the space between the escalators to Level 2 and the escalators down to the Food Court.  

The Toronto Star wrote about our campaign today. You may recognize Jadine Baldwin, who wrote this recent piece for BLOOM.

And 17-year-old Maddy Hearne spoke this morning on CBC's Metro Morning about how people react awkwardly to her post-concussive syndrome, because they can't see the injury. 

The creative for our campaign was donated by KBS advertising agency.

Join us!

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thoughts that live in the hole in my brain

By Louise Kinross

Lexin Zhang is a 17-year-old student participating in Holland Bloorview’s Youth@Work program. This is a poem she wrote about having cerebral palsy. Following the poem are some questions we asked her.

thoughts that live in the hole in my brain

By Lexin Zhang

When I was a child, I’d fantasize a world of ‘what ifs,’

Like, ‘what if I was famous?’ ‘what if I could walk over lakes?’

‘What if the hole in my brain

Where the dead lay

Was no longer an empty grave

But littered pink with thousands of cherry blossoms?’ or,

‘What if doctors and nurses didn’t make mistakes?’

In a universe where that’s true

I’m a dancer, or maybe an athlete.

I don’t have thick strained words

That tumble down my tongue,

That I, and others, shy away from.

I hold drinks at parties, I don’t feel heavy.

What’s it like to not be balancing on a tightrope,

Knowing that the one thing I can do, for certain, is fall?

Painfully familiar with the word ‘almost.’

Instead of wishing that no string

Hung over the Atlantic, leading back east.

I’d call the country I was born into, home.

Live my life there. Love where I’m from.

What that’s like, I don’t really know

Because I can’t live in a country, attend an education system,

That would retch me up like mucus and bile,

As if I were something senile.

So, I stay parched, trembling in one cramped position,

And sometimes I wonder.

What would it be like to not worry

If I worked hard enough,

If my persistence was enough.

Hiding behind piles of compensation, for my body

To not be seen as a mirror of my mind.

When I was eight, I had a best friend.

The game we played every single day was ‘what if?’

We’d pretend to be vets, spies, superheroes, bakers…

We’d pretend to be mothers;

Though we could just be ‘pretend mothers,’

Because holding a baby with two hands doesn’t work

If you have one on a walker,

Or one outstretched to balance,

To anticipate the fall, the failure.

Looking back; I was silly,

Having spent my childhood worrying about

How people saw me,

How arms were supposed to wrap around a body of such complications.

How I was supposed to live alone.

Sometimes, I’m silly, and I still worry.

As a child, I once said, ‘I should have died at birth’

So my mother wouldn’t have to suffer

More than she already had.

If those nerves weren’t dead,

Would I feel less like lead?

Feel limitless, and not tie my failures to the misuse,

Abuse, of her hard work?

She’d be overseeing the constructions of skyscrapers,

Claiming her rightful piece of the sky, not spending years

Making sure that I

Didn’t end up twisted on a bed for the rest of my life.

Maybe my father would feel more ease

In his chest when he looks at me.

I’d fishhook my fingers onto the corners of my mouth

To form the word ‘sorry.’

My grandfather and I, we are a lot alike;

Every time he watches me when I’m not looking,

His soft eyes are brimming with tears, thinking

Who I’d be, without my cerebral palsy.

____________________

BLOOM:  Why did you write this poem?

Lexin Zhang: These are thoughts I’ve had since I was young and they’ve lived in my brain. When I was young, I thought about my disability as being a literal hole in my brain. But it’s metaphorical too. These things live in the deepest part of my brain, and I have only thought them to myself. They’re dark thoughts that are tinged with instinctual emotion.

BLOOM: When you refer to the string over the Atlantic, what do you mean?

Lexin Zhang: It was a lot of frustration toward feeling like I was not exactly belonging in any society, whether that was where my family was from, or where I grew up. I would prefer not to be specific about my experience because I don’t want to influence the way readers interpret it. I want it to be applicable to [everyone] in some way.

BLOOM: This is a beautiful line: ‘I hold drinks at parties, I don’t feel heavy.’ Does your cerebral palsy make you feel heavy and weighed down?

Lexin Zhang: Yeah. Because I think especially as you get older you don’t feel as light as when you’re younger, when you ran around better. As you get older, you feel like your limbs are heavier. You try to do stretches and do physical things to deal with that, but I’ve encountered a lot more physical issues as I’ve gone through my teenage years.Though, the feeling heavy part is mostly to do with figuratively feeling weighed down and hindered from doing things, sometimes simple things, that I want to do.

BLOOM: You talk about falling in the poem.

Lexin Zhang: The falling down is literal and metaphorical, because I’m like that. It’s about literally falling down as a child. More so now it feels like learning that I fail at things, and indirectly disability is a factor to do with the failure. It’s a part of me and it does deter me from doing certain things. When I wrote this, I was in the thick of what I considered failure so I didn’t want to appreciate the challenges, and failures, I was met with.

BLOOM: But just as your experience with disability has been hard, that experience has also shaped you in phenomenal ways.

Lexin Zhang: It’s a part of you that forms your personality. Whether I succeed or fail, disability makes a contribution. I could never find myself fully relating to people who say that they 'are x y z, despite their disability.' I always feel like I’m every bit of who I am because of my disability.

BLOOM: It’s a factor when things are hard, and it’s a factor when things go really well. In what way do you think people see your body as a mirror of your mind?

Lexin Zhang: I think it’s very easy for people who aren’t familiar with people with disabilities to take me at face value. Humans naturally judge and categorize. When they see the way my body moves, or if I open my mouth to speak, there’s no way for them to know I don’t have a developmental disability as well. I constantly felt like I needed to win people over and compensate with academia. Prove to them that I’m intelligent and articulate.

BLOOM: You write about how when you were eight, you and your friend imagined your future and in addition to talking about careers, you talk about being ‘pretend mothers.’ But then you say in your case it would always be pretend because ‘holding a baby with two hands doesn’t work if you have one on a walker.’

Lexin Zhang: That was definitely one of the more secret thoughts I've had. I only really discussed it once, that time with my friend [who also had a disability]. It was in a joking, but real way: ‘We’d probably never have babies because we’d drop them. We’re not good at holding things.’ It’s funny. But it’s also kind of sad. Society likes to tell us that we need to do certain things at certain points of our lives. And as a child with a disability, you look at that and think ‘how am I going to do that?’ You’re always thinking how am I going to live independently, never mind how am I going to have a family or do things that are considered important in society.

BLOOM: We’re going to run a second poem of yours next week, which is a sequel to this one.

Lexin Zhang: I was talking to Lisa, who’s a student who works with the social worker Gabriella. Lisa suggested I tell myself a different narrative. Not necessarily positive, but from a different angle. Me coming to terms with my whole disability, not just parts of it.

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How 'there's a new rule' broke me

By Louise Kinross

Hoops. This is another story about the unnecessary hoops people with disabilities and their families are forced to jump through to get government supports.

A year ago I wrote about the nonsensical, make-work project the Ontario Disability Support Program puts families through to get NEW documentation for long-term disabilities.

At the time, I’d learned that we could get our son’s hearing aid batteries covered through the program.

However, ODSP first required us to take our son to see our family doctor, to get that doctor to write a note saying he had hearing loss.

A family doctor cannot diagnose hearing loss. Only a regulated audiologist can. 

But ODSP would not accept 20 years’ worth of audiology reports documenting my son’s permanent hearing loss.

Instead, ODSP insisted that my husband and son take a morning off to go to the family doctor, to ask the family doctor to write a note saying my son had hearing loss.  

Then—wait for it—ODSP required my husband to hand-deliver the doctor’s note to the distant ODSP office. The government would not accept a faxed or scanned copy of the letter from the doctor’s office.

I had almost forgotten this outrageous and unnecessary run-around.

UNTIL THIS MORNING.

That's when I called our hearing aid provider to tell them we needed a refill on my son’s hearing aid batteries.

These are the batteries approved for coverage by the ODSP. How difficult could this task be?

"I'm afraid there's a new rule," the provider said. 

Heart drop. Why did I even entertain the idea that I could accomplish this task with one call?

"We used to be able to e-mail a request for the batteries to ODSP," she continued. "But now ODSP stipulates that we e-mail the request to the family, and the family needs to physically take the paper request to their ODSP worker for approval."

What? What?

We are ALREADY approved for the batteries.

The "request" that I could drive over to the ODSP office is the same one that the hearing aid provider could e-mail.

Why must I take time off from work to take a piece of paper to the far-away ODSP office for an item that has already been approved, for a disability that has been documented for over 20 years? A disability that doesn’t change over time (unless it gets worse).

Why must an adult with a disability, and possibly a mobility problem, have to take time from their day to go to an ODSP office to get an item covered that has already been approved?

Why are we wasting the time of people with disabilities, their families and family doctors, as well as the time of the ODSP worker who has to entertain these visits, rather than accepting documentation from an audiologist that a person has a hearing loss?

Why? 

Then, the provider added: "Just so you know, even if you take this sheet of paper over to the ODSP worker, it may not be approved right away."

That's when I reached breaking point.

Why do I need to get an in-person approval for something that is ALREADY APPROVED?

I got out my Visa card and told the provider to charge us the $50 for the hearing aid batteries and to put them in the express post.

Then, I came in to work and wrote this article. Because I want everyone to understand how a population that is already marginalized is being disadvantaged by the very government that purports to serve it. And how our dollars are being wasted.

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It's the little things, like shoes

By Louise Kinross

A year ago I bought my son two pairs of the same New Balance training shoe—one in white and one in black. A colleague had recommended it as one that works well for people who need a lift added to one shoe, because of a difference in the length of their legs.

There’s nothing wrong with this particular shoe, per se. But it’s boring.

Before my son went off to camp this summer, I told myself I would find a new pair of shoes for him, a pair that not only fit his unique feet comfortably, but which were also high on the cool factor.

I knew this would be a challenge. I did not imagine that two months later I would be shoeless, and sitting in a work meeting looking dejected and asking: “What was that journey called that knights were sent on, you know, like in that poem Sir Gawain and the Green Knight?”

“Quest?” my colleague offered.

“Yes! Quest! That’s it!”

Let me explain. My son’s feet do not fit standard sizes. “Would it be okay if I wrote about how hard it is to find a pair of shoes that fit you?” I asked him this morning. He nodded in the affirmative.

My son has an unusually high instep, which means that most shoes are not roomy enough to do up over his instep.

In addition, he wears in-the-shoe orthotics, so his shoes need extra width.

The sole must be wide and relatively flat, so that a lift can be put on the left one (forget all those shoes with big bumpy things on the bottom).

And he needs lots of ankle support—he can’t wear those weightless Nike Free running shoes that one of my daughters has in about six different colours.

The ideal pair is laceless and easy to put on. And it must come in a boys size 2.

I began by visiting a children’s shoe store in Toronto—nowhere near my home—where I purchased a pair of Asics running shoes that I thought might work. I didn’t bring my son because it isn’t easy for him to walk, and I wanted this search to be painless for him.

I got them home. I took out the insole and managed to shove one of the orthotics in—just barely.

“Can you put this one in?” I asked my husband.

He began to manhandle the shoe.

“But don’t WRECK the shoe, I may have to bring it back!”

He got the orthotic in. But it was pushing out against the sides of the shoe. Would this cause the shoes to tear?

I asked my son to try them on. It sounds easy, but it wasn’t. We both had to work to get his foot in there—me holding the back of the shoe down while he tried to step in, at the same time as standing up, to add pressure. It was obvious there wasn’t enough room for his instep.

I wasn’t cast down. I drove right back over to the other side of town, in rush-hour traffic, and asked for the larger size. When I brought that pair home, they didn’t fit either.

That’s when I decided to do this shopping thing from the comfort of my own home. I went straight to Nike.com. High-tops, I thought, would probably be a safer bet, for the added support.

I found these Nike Air Force 1. I sent the link to the person who makes our lifts and he said one could be put on them.

I ordered.

They arrived. They looked great. But when my son tried to put them on it was like trying to force a square peg into a round hole. We did finally get the shoe on and done up. But his instep bulged out of the top so the velcro strap hardly reached over to the other side to close them. His feet were falling out of the shoes.

I put the Nikes back in their box and dumped them in the back of my car, where I still had the larger pair of Asics rattling around in a box.

Nikes is a dream to order from, by the way, because they cover the cost of returning items (how do they do that?). I put the address label with the bar code they provided on top of the original label and handed the box over at UPS. A few days later the money was credited to my account.

While googling “best children’s shoes for orthotics” I came across recommendations for Plae shoes, based in San Francisco. On their Facebook page they had photos of kids wearing the shoes with orthotics. Customers said they were wider than usual, didn’t have an insole that had to be pulled out before placing orthotics, and had velcro tabs.

I thought this pair might work.

I put them in my cart and started to type in my address. I scrolled up and down under “state/province” but they only listed states. What? They don’t ship to Canada? The nerve! How provincial could this company be?

I “chatted” online with a service rep who told me that Nordstrom in Canada carries some of their products.

I called Nordstrom downtown and described the shoe. The salesperson put me on hold. Ten minutes later he picked up the phone again. “We don’t have that style,” he said, “but we do have a Plae shoe in…” and then he proceeded to describe this other shoe—blah blah blah—the elaborate details of which I can’t recall. “Hold them,” I said, mentally changing my plans for that night.

I messaged my brother, who lives in Boston, to ask him if I could have the pair I liked on the website shipped to his house. “Sure,” he wrote back. “And I’ll even pay to ship them to you.”

Then I drove to the Eaton’s Centre to see what style of Plae shoe they had in stock.

Major disappointment. Before I went to the cash to ask for the shoe I’d put on hold, I perused those on display. There was another Plae one. They were sneakers, not the high-tops I was looking for. I picked them up but they just kind of flopped in my hand. No marks for support.

An overly helpful salesperson swarmed in on me.

“Are you looking for something specific?”

“I called and had a pair of Plae shoes put aside for me. But I’d also like to look at the other shoes as well.”

“Of course,” she said, “I’ll go grab the Plae ones you called about.”

I found a pair of Adidas high tops that I thought might do the trick. I picked them up and sat looking at them, opening them and closing them and trying to eyeball whether they were likely to fit my son’s feet. The more I stared at them, the more uncertain I grew.

The salesperson was now by my side, with the pair of Plae shoes I’d put on hold. “I definitely don’t want those,” I said, “but I’m not sure about these,” I said, gesturing to the Adidas.

“They’re great shoes,” she said. “We’ve had no problems with them.”

“I’m just not sure if they’ll fit my son’s instep.”

“How old is your son?” she asked.

Oh brother, I thought. If I tell this lady how old my son is, she isn’t going to understand why his feet are so small. And then I’m going to have to tell her a long story.

Instead, I opted for: “He wears a size 2.”

“Oh, well that’s easy,” she said. “Why not just buy him a size 3? Then you know they’ll fit and he’ll wear them for a while.”

Oh dear. I know this is what it’s like to buy shoes for people who fit standard sizes. But my son DOES NOT fit standard sizes.

“You can return anything for a refund for up to 30 days,” she said, smiling and cocking her head to the side hopefully.

I bought them.

When I entered the house, my husband gave me a puzzled look. He’d seen shoe boxes coming in and going out of our abode for the last few days.

“What did you buy?”

“A pair of shoes.”

“Another pair?”

“The other ones didn’t fit!”

I called my son up to try them. “What do you think?” I said. He smiled, and I could tell they met the cool factor.

Then we tried to put one on.

Remember that first pair of Nike Air Force high tops we got?

This shoe was made the same way. For someone with ZERO in-step.

You can imagine the salesperson’s surprise when I returned with them the next day and became the first disappointed customer. "They didn't fit," I said simply.

I was frustrated, but I wasn’t giving up. I started surfing the web looking for other types of high-top shoes. I came across this Ecco site and thought these shoes looked cool, well made and sturdy. And, they had a velcro closure. I chatted with a service rep who told me they came without insoles, which is handy for orthotics.

I ordered them.

The Ecco shoes arrived. They were gorgeous. Beautifully made. I wish I could afford a pair myself. But they didn’t fit.

I posted a message on the Three To Be Facebook group, to ask other parents for shoes that work well with orthotics.

One mom suggested DC shoes, because they’re wider than usual. I went to dcshoes.com. I thought these might work. But couldn’t I get these shoes somewhere locally? I went to a SportChek, but it turned out to be one that hardly stocks any kids’ shoes. I went to “Find a store” on the DC shoes website and typed in my postal code. It pulled up a store called CORE on Queen St. E. It was 8 o’clock at night, but I called.

“I’m looking for a Plae high-top shoe in a boys size 2,” I said.

“This is a sports marketing agency,” the woman said, while music blared in the background.

“Well, your company is listed on the DC shoes website as a distributor. Did you used to be a shoe store?”

This woman wasn’t interested in prior incarnations of the building.

So I ordered the DC pair online.

They were my last shot, because my son was leaving for camp and the window for having a lift put on them was closing.

DC Shoes sent me a tracking number, and everything was going according to plan. Then I got an e-mail alert to say the delivery date was being delayed four business days. It would take that time, the note said, to bring the shoes from the U.S. through customs at the Canadian border. What? Four days!? Was someone walking them over? I didn’t have four days.

I messaged the company to complain that they weren’t honouring their original delivery date. They were not moved, on compassionate grounds, to find a solution.

The DC Shoes arrived the day before my son went to camp. They didn’t fit. I had to pay the courier to send that pair back.

I couldn’t believe that I’d been on this mission for over a month, and had nothing to show for it.

To rub salt in the wound, Nike had already designed an "accessible" shoe. 

The LeBron Soldier 10 FlyEase was developed for a student with cerebral palsy who needed a shoe that fastened without laces. It has an ankle zipper that makes it easy to put on and do up.

In our April issue of BLOOM, we gave a shout out to Nike for the latest version of this FlyEase, noting that LeBron James had handed out pairs to kids at the Cleveland Clinic Children’s Hospital for Rehabilitation.

At the time, I thought they looked perfect for my son.

But when I sent a picture to the orthotist, he said the sole was too narrow in the middle to work with a lift.

Huh?

You mean Nike’s accessible shoe isn’t accessible for my son?

I’d watched the videos about how this shoe was designed. I’d posted all over social media, letting all my disability friends know about it.

If Nike’s accessible shoe didn’t fit my son’s foot, what would?

I went back to Nike.com and noticed they offer customers the ability to customize their shoes in a million ways (slight exaggeration). In boys’ shoes, you’re given 11 options for things like tongue, swoosh, midsole treatment and laces. Within each of those categories, there are dozens of colour options to choose from. You can even get polka dots for goodness sake. You can choose whether to have the Nike name on the back of the shoe. Or to leave it blank. Frankly, I got tired of clicking on all of the possibilities.

Why, I thought, isn’t it possible to order a lift in a standard size from the manufacturer, instead of having to take your shoes to an orthotist and pay that person, in addition to what you pay for the shoe? And if the lift came from the manufacturer, it could be designed to match perfectly, not stand out, which is how some of the lifts end up looking.

How hard could it be to design a lift in a couple of common sizes that can be put on and taken off a shoe? It didn’t sound like rocket science to me.

I remembered that the Nike guy who designed the FlyEase shoe with the zipper was called Tobie (unusual name). I googled “Tobie Nike e-mail” but I couldn’t find his e-mail. I did find his last name: Hatfield.

So I called the corporate offices.

I asked for his e-mail.

“We aren’t able to give out e-mails,” the woman said. “But I can give you his number.”

Bingo, I thought.

I called and left a detailed message. I explained that I’d shared the FlyEase with our BLOOM readers in 181 countries. Then I said I’d looked at all the ways people can customize their Nike shoes, and I was frustrated that there wasn’t an option to purchase a lift, which is something my son needs. Wasn’t it possible to make standard, removable lifts that could benefit people with disabilities?

I was excited. Maybe Tobie would be interested in this idea.

I didn’t hear back from Tobie.

I did get a call from Molly (these Nike folks have hip names, huh?), who apparently works with Tobie.

Molly said Tobie got my message, but was unable to personally respond. She said they had floated the idea of customizable lifts in the past, and it’s something they hope to do in the future. But there were no immediate plans.

Which left me back at ground zero.

AAAAAHHHH.

I went back to the website.

Maybe I would purchase a pair of the FlyEase ANYWAY, just to get them in my hands. Maybe I could find someone who could work a miracle by affixing a lift onto them.

Then I realized the shoe didn't come in a size 2. The sizes you could click on started with a 3.5.

Really? Why?

Why would a kid wearing a 3.5 be more likely to want this shoe than a kid that wore a size 2? A kid who needs the access due to disability in a 3.5 would also need the access in a size 2. Had Nike done some kind of sophisticated buying pattern analysis on this?

I typed in my e-mail and a question: Why isn't it possible to purchase this product in a size 2 or 3?, I asked.

Nike e-mailed to thank me for my question. I can’t find their response now. They said they would share my feedback. But when I checked back days later, you could still only buy the product in size 3.5 and up. Ditto when I looked today.

I do not like giving up. I do not give up easily. Anyone who knows anything about disability, knows that a parent will go to the ends of the earth to get something for their disabled child, to have them included, especially if that something is freely available to other children.

And that's how I ended up thinking about the fact that I'd had to write an essay in university about Sir Gaiwan and the Green Knight. I felt like one of King Arthur's knights, who kept coming up against impossible tests. Heck, I'd gotten an 85 in a course on Chaucer's Canterbury Tales. But in all of the legends I could remember, there was some kind of resolution, some happily-ever after, even if it wasn't perfect.

Why wouldn’t a company as big and successful as Nike design a few accessible shoes with different features, and with the ability to customize things like a lift? I know it’s not a big market. But they've received GREAT press for the FlyEase. That media is worth its weight in gold. Access options allow people to WEAR their shoes, period. Not just decorate them. Who can't get behind that?

My trial is not over. Yet.

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A doctor reveals her hidden disability

By Louise Kinross

Dr. Paige Church is a neonatologist at Sunnybrook Health Sciences Centre and a developmental pediatrician who sees children with spina bifida at Holland Bloorview. Last Monday, she wrote about what it’s like to be both a doctor and a person with a disability in a JAMA Pediatrics article. Paige has spina bifida, and she begins the riveting piece with her own medical record.

BLOOM: You and I did an interview a couple of years ago, but you decided it wasn’t the right time to share your story. What changed?

Paige Church: I think our conversation instigated a lot of reflection, and then maturity and time added perspective. I had to think and think and think about how to tell the story in a way that maintains dignity and privacy, but that draws attention to the issues that are woven into it.

BLOOM: What do you hope health professionals take from it?

Paige Church: That we need to start being more individualized, and not textbook, in conversations with parents whose child may have a disabling condition. Trainees at times have found it frustrating that there’s no formula. They want to cling to ‘If this happens, then this is what I do.’ I think when it gets into conversations around disability and living with x, y or z, it isn’t that easy to formulate that life into a simple package. Messaging that it is simple is a mistake.

BLOOM: How were you taught to counsel parents about a pregnancy that involves a disability?

Paige Church: There are essential components that need to be conveyed, but we make the mistake of simplifying it to such a degree that you can do it the same for everyone. We need to focus a lot more on exploring [each] family's structure and values and perspectives. I might spend an hour just talking to one couple about who they are: Their jobs, their values, their religion, their extended family, their thoughts about disability.

And then convey essential information in real-life terms, not medical labels that often don't make sense. We need to describe the day-to-day outcomes that are possible, and explore how this information fits into a family and their resources and challenges. There isn't a specific recipe for any given condition. It has to flow from the questions, concerns or insights that [a particular] family shares.

I worked with and learned from Adrienne Asch, who was an American bioethicist and disability advocate. She taught me a lot. She challenged me to think about how families are not clubs. You don't pick your members. Certainly I want children to feel loved and accepted and that factors into my counselling significantly.  

BLOOM: In your article you talk about how the effort to appear normal in your life and work is exhausting. What motivated you to want to appear normal?

Paige Church: I might be making a sweeping generalization, but I think for kids who grow up with a disabling condition like mine, where there are no outward signs, you have two paths to walk when you get to school. One is that the school treats you like everyone else, and you keep quiet about your extra issues. The other is to start sharing information that is quite private. When you get into bladder and bowel management, how do you do that in a way that isn’t stigmatized or bullied? As a child, I think I just perceived the stigma and decided to go the way of least resistance, and keep this all very quiet.

BLOOM: I’ve heard some unbelievable stories about children who are incontinent, and how they don't drink for the entire school day to avoid having an accident.

Paige Church: Yes, this is a strategy that's used. It's not a good one, but it's reinforced because it works, at least in the moment. I certainly have used it myself. It’s a strategy we use when we can’t afford to have problems. When I had an appendicocecostomy, my surgeon said ‘Why am I doing major surgery on you?’ I said ‘Do you realize that I've been limited to eating a handful of crackers for the whole day? I can’t afford to have an off day. I can't afford to not be available to go into an emergency in the NICU.’

BLOOM: I wasn’t clear on what that surgery was.

Paige Church: The distal end of the appendix is cut off to create a hollow tube and channelled through the abdominal wall to make a stoma you can put a catheter into. This is an option for some children with spina bifida and other conditions associated with fecal incontinence to evacuate the bowel once a day in a controlled setting. 

BLOOM: But before the surgery you didn’t eat during the day? So you were starving?

Paige Church: I’ve got more dental bills than I can count. You eat candy most of the time.

BLOOM: Doesn’t it seem unfortunate that a person has to have a major surgery for incontinence?

Paige Church: No. It was life-changing for me.

It takes the pressure off. It gets you back to being like everyone else with a degree of control over these private functions. It still isn’t perfect. But if six out of seven days are more controlled, it allows you to focus on other aspects of your life, without being consumed by worry.

BLOOM: Because you have firsthand understanding of spina bifida, you must have had unusual conversations with youth with spina bifida, in the early days before you shared about your experience.

Paige Church: Early on I looked like I was a real expert, which was kind of nice. I knew a lot of the intimate details. Over the years I’ve learned there’s no way to say ‘I have spina bifida, too,’ because there are a thousand different types and many ways a person can be affected.

As a resident, I once shared when a baby was just born that I had spina bifida. But the baby’s level of involvement was different than mine. It set the stage for expectation, and, as a result, I worry that it did more harm than help with bonding.

Now I share my story on an individual basis. It may be with parents when their children are toddlers. Or with older children who are struggling with some aspect of the condition, and I can share my story to lend insight.

BLOOM: In your article you talk about how the medical world views disability in a black and white way as a negative. You were taught that telling someone they have a disability is equivalent to telling someone they have cancer or will die.

Paige Church: Absolutely.

BLOOM: What I got from the article was that your experience of disability is the opposite of simple. That’s it’s rich and complex and full of ambiguity.

Paige Church: Yes, and that richness and ambiguity is not captured anywhere in medicine. For every horrible thing I’ve experienced, I can say there are five things that have been great. For example, if I didn’t have spina bifida, I wouldn’t have my daughter, who we adopted. And my life would not be full without her. And I wouldn’t want my own child in a trade for her. If I could have, I’d have had more of her.

BLOOM: You note in the article that your challenges with spina bifida helped you pick a fabulous husband.

Paige Church: It shapes who you are. Because of some of my obstacles, I grew and changed. I kept looking and waiting for someone who wouldn't see the challenges, but rather would see me.

BLOOM: You say that you provide counselling that is balanced, sensitive, thoughtful and individualized, rather than objective. What does the word objective mean in medicine?

Paige Church: It’s supposed to mean you don’t have any bias. You’re not bringing into the discussion anything that is subjective or is your interpretation. That’s not necessarily a bad thing. But it does become a problem when you think about the fact that it’s impossible to not have some degree of inherent subjectivity.

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