Thursday, September 29, 2016

Disability in verse

We shared a poem by 16-year-old inpatient Maddy Workman (left) a few weeks ago. She'd spent five months at Holland Bloorview doing rehab following two hip surgeries and faces another one in the new year. 

It turns out Maddy's mom Danielle (right) is also a poet. "I wrote this about a year ago, to bring awareness to the fact that so many, including parents, have skewed perceptions of people with different abilities," Danielle says. "People often speak to Maddy as if she's a little child or speak over her, asking me for her information and jumping in to finish her sentences. And generally speaking, people are surprised that she is physically able to do things like draw a picture or write poetry. Even write her name by hand, hence where the poem came."

Maddy's Poem
By Danielle Workman

I wait. 
I wait anxiously.
I wait while I watch.
I watch her while she struggles.
Struggles to hold a pen in her writhing fingers clenched in a fist.
I wait and I watch while she struggles to make letters appear on paper.
I listen to her breathe, as the air rattles in her trachea grating over the scar tissue.
The scar tissue a constant reminder of the tube that kept her alive.
Kept alive despite the odds.
Kept alive despite the consequences that no one could know.
Kept alive despite faced with the choice to not.
No mother should ever have to make that choice because how is it a choice that can be made?
I can hear the struggle in her breath.
I can see the struggle as she wills her fingers to do as she tells them too.
Fierce determination in her eyes.
This labours on, as she etches out slowly one stroke at a time eventually making a rudimentary looking letter.
The letter M.
M for martyr?
M for magnificent?
M for Maddy?

And then she smiles, clearly pleased with herself.
I waited and I watched again while she started the next letter.
Something was different.
She didn't appear to be struggling.
Her fingers still writhing holding her pen tightly gripped in her clenched fist.
I listened.
I could still hear the air being sucked in over the scar tissue while she worked so diligently.
The rest of her body tightly wound, and yet this time I could see her smile, while she struggled.
Or was it struggling?
What was different?


The difference was me.
She's always just done what she needs to do.
It was as if I was seeing her through a new lens, despite her disability.
I was no longer pitying her.
Nor was I glorifying her.
I could just see her clearly now.

I waited and watched while she continued to craft her letters.
Each stroke laboured with intensity.
Each letter created, born out of will.
I waited and watched while her struggles dissipated and all that remained for my heart to see was her smile.
Her letters complete.
Her heart beating every beat full of pride.
Her letters simply read

Tuesday, September 27, 2016

Make work? Families still face too much of it

By Louise Kinross

A couple of weeks ago a story with this headline appeared in The Toronto Star: Easier path to cash for adults, kids with disabilities.

It kind of gives one the image of a limitless pot of gold at the end of the rainbow, doesn’t it?

The story is about how people apply for Special Services at Home funding and the Ontario Disability Support Program—and cumbersome red tape that made them prove their disability again and again.

SSAH is funding that enables families to hire a worker to help a child develop skills and participate in the community while giving the family respite.

In the past, families had to reapply every year—filling out numerous forms each time—even though in most cases the disability didn’t change.

It was a gigantic make-work project—for families and program administrators alike.

It’s reminiscent of stories we’ve read about Canadian war veterans who had to “prove” that they still had no legs
on an annual basis.

The changes to SSAH came after the provincial ombudsman’s scathing report on disability services last month. I’m not sure that what The Star calls “an easier path to cash” merits congratulations.

Perhaps “I’m sorry we’ve been putting SSAH families through this unnecessarily for decades” from a government spokesperson would be more appropriate.

There was no exchange of “cash” in the SSAH program in the way the headline implies. Workers invoice parents, who then pay them. Parents then send those invoices in to the government, and receive a cheque or deposit to compensate them, up to their funded amount.

The Toronto Star story also notes another change. Once a person with disability has met the criteria for adult services, they don’t have to prove their disability again to apply for ODSP. The ODSP covers basic needs like food, clothing and shelter and some health benefits.

That's good, but the story doesn't mention that you may have to get new documentation of old disabilities after you're on the program.

Recent case in point: I was told that hearing-aid batteries are covered through ODSP, but I'd never followed up on this.

My son’s hearing loss has been documented since he was 18 months old. In fact, I’m sure it was included in our application to ODSP in the first place.

Imagine my surprise, then, when I asked our hearing aid provider about how to get batteries covered through ODSP, and I was told that due to a new regulation, we would have to take our son to see our family doctor, and get that doctor to write a note saying he had hearing loss.

Now, our hearing aid provider has decades of hearing tests on hand for our son. They could have easily sent these to ODSP, but apparently that wasn’t sufficient.

No, it would require two members of our family meeting with a family doctor who isn’t an expert in hearing loss to meet the new regulation. Other than seeing that my son was wearing hearing aids, the doctor couldn’t assess his hearing loss on the spot. Yes, she too would have had all of his hearing tests in her file.

But why, when his hearing loss has been documented for more than 20 years, was it necessary to get a new doctor to document it? Why weren’t the audiology tests that the hearing aid provider had sufficient evidence? Audiologists are regulated professionals are they not?

Then, after making the doctor’s visit with my son, my husband had to physically take the document to the hearing aid provider. We were told the government wouldn’t accept a faxed or scanned copy from the doctor.


And to top it off, my husband was told he’d have to do the same thing next year.

How does this benefit anyonefamilies, doctors or program administratorsin the system? 

Are there really people out there scamming the government for hearing aid batteries they don't need?

Monday, September 26, 2016

'Advocacy is draining:' A reader responds

A couple of weeks ago we launched the latest in our A Family Like Mine video series: 'The children that we have... they're just as human'. Terri Hart-Ellis, (above left), mom to Addie (right), who's in Grade 7 in Milwaukee, Wisconsin, posted this fabulous response. Thank you Terri!

She speaks truth.

She admits for me something I don't often admit to myself. And sure as hell not to anyone else. I fear it smacks of complaint, that it might fuel the very prevalent wrongheaded belief that people with disabilities are in any way a burden.

My daughter is my daughter and I mother her the best I can because I love her. That is true of both of my girls. Because they are mine.

But advocacy is draining, as she states here. Decision fatigue is part of my every day.

How do we approach this homework? What words do I use to challenge this approach at school while still preserving collaborative relationships? Is this enough therapy or too much? What vocabulary does she need for this trip to the grocery store?

Do I accept that stare and move on because I'm tired, or do I have the energy to clarify what it feels like to my family? Do I facilitate an interaction here with this acquaintance of Addie's who is ignoring her, or just let the opportunity pass.

When do I start talking to the next level of school about how we don't do segregated education or alternative anything? Should I use this five minutes I have programming her communication app or calling the medical supply company again? What accommodations does she need for 7th grade camp and how can I know the answer to that, never having been to 7th grade overnight camp?

Not a whine, not a plea for pity. Just a rare admission. I think this woman's articulation of many other beliefs I have about disability being a full human experience and not a lesser one, along with her comments on the drain of advocacy made me understand both things can be true. It makes days rather solitary for a variety of reasons. And while I know how to make the most of solitude, sometimes there is just too much of it.

Terri Hart-Ellis

Friday, September 23, 2016

In Paul's class, 'a friend is a friend, regardless of... abilities'

By Louise Kinross

Paul Alcamo is a veteran at Holland Bloorview. He joined the hospital in 1987 as a recreation therapist and later became a teacher in our school. Almost 20 years ago he helped found our reverse-integration kindergarten, which invites able-bodied children to attend our school for children with disabilities.

The two-year program is a partnership between Holland Bloorview and the Dr. Eric Jackman Institute of Child Study at the University of Toronto. It promotes inclusion by educating kids about disability and adapting all activities. Typical children are immersed in the disability world, enabling them to gain a deep understanding of diversity, while the children with disabilities develop confidence in voicing their needs. In recent years the school has struggled to attract children who don’t have disabilities. BLOOM talked to Paul about his life's passion.

BLOOM: Why did you choose the field of children’s rehab?

Paul Alcamo: I worked in a program at North York Parks and Rec with kids with a range of abilities, and that spawned my thought of this as a career. I liked these kids and thought it was a natural bond and connection that I wanted to continue. I’ve always enjoyed the interaction and meeting the challenge, together with the children, to help them learn and grow.

BLOOM: What is the integrated kindergarten?

Paul Alcamo: It’s a classroom first and foremost that tries to give children as rich and joyful a learning experience as we can. The overriding philosophy is that a friend can be a friend, regardless of their abilities. We embrace all of the important things that are wonderful about Ontario’s curriculum—enquiry and discovery and taking joy in learning and sharing that with your friends. We have to make sure we differentiate it so we can accommodate the different abilities in our class. We have a healthy combination of direct teaching and situations where children are encouraged to pursue their questions or ideas about big issues.

BLOOM: I know you have amazing themes where you transform the classroom?

Paul Alcamo: I’ve always felt that in order to develop your understanding of a topic you have to practise it in an active way. With our pretend centre we’ve created a whole dig site where the kids become paleontologists extracting dinosaur bones. Then they go to the museum to clean the bones and put them into the shape of the dinosaur, and then describe the dinosaur. We’ve turned the pretend centre into a coral reef, a rainforest and a den where bears can hibernate.

Last year on a walk outside the kids saw these bugs crawling under a rotting log, and they asked: ‘What’s going on there?’ So we created the framework of the rotting log in the pretend centre and the kids dressed up as wood lice and bess beetles. They re-enacted how a bess beetle chews up wood that is partially broken down by fungus, and poops it out and feeds it to its larvae. The information that they develop and practise through play really stays with them, and they go home and tell their families about it.

BLOOM: You do a lot of teaching about friendship.

Paul Alcamo: We talk a lot about abilities and who’s the same and who’s different. We embrace the idea that caring, sharing, including and encouraging are four things that are really important to friendship. The kids come in and report if they saw someone doing any of these four things, which keeps them mindful of how others behave. They have a language. For example, you’ll hear: ‘That’s not a very encouraging thing to say.’ Or ‘You’re not including him properly.’ This is a philosophy that you have to imbue and work at.

BLOOM: What kind of changes do you see in the kids?

Paul Alcamo: The kids who come in and are getting therapy? I see them realize that they have to be outgoing in order to make friends. And that if you stay quiet and still, and don’t advocate for yourself, you run the risk of being left alone because you’re giving that signal that you want to be by yourself. ‘Do you want to be by yourself? If not, go ask someone to play with you.’

With both groups we make them understand there are ways to figure out how to play together. Sometimes that means changing the equipment or the jobs you do in the game, or where the game is played, or your boundaries or your timing.

We have to be very explicit with the kids about what they’ll do if they use a walker or a power wheelchair or run on their legs. We don’t just tell them it would be ‘nice’ to consider their friends’ needs.

With tag, we change the roles so everyone is working hard, but at their level of ability. So if you’re using a walker or wheelchair you can hold on to a long Styrofoam pool noodle and go forward. Even though you can’t move as fast, the longer noodles give you extra reach to tag kids. But if you run on your legs, you have to run backwards to tag people. So you’re still working hard, but we’re slowing you down.

For kids who are reticent about being ‘it,’ we came up with the idea of Captain Invincible. This is the person who’s allowed to unfreeze people when they’re frozen. It’s a powerful role, but you can go at your own speed.

BLOOM : What changes do you see in the other kids?

Paul Alcamo:
Sometimes at the beginning of the year, they’ll refer to another child by their equipment name. So they may refer to ‘the wheelchairs.’ By the end of the year, they’re just using their friends’ names. They have an understanding of what their friend needs to do this or that, and they’re not upset about adaptations. It’s a matter of ‘these are my friends, we play together, this is how my world works, and this is natural.’

BLOOM: What’s the greatest challenge?

Paul Alcamo:
Just making sure you stay on top—that your accommodations are in place, you have differentiation in your lessons so everyone has what they need to learn, and you’re conscientious about reinforcing that we’re all friends and we all have to find a way to play.

BLOOM: In the past you had more kids without disabilities, but you mentioned enrollment has declined in recent years.

Paul Alcamo: It’s a sad occurrence. I think there may be a number of factors. These days most families send both parents to work, whereas when we began the program there were a lot of stay-at-home moms. Also, we used to be the only full-day kindergarten, but we don’t have that niche anymore.

The families who do come are very committed to the idea of learning about the world of their classmates with disabilities and how to include and adapt and see their friend as a friend. We have families who come back to meet every year on the last day of Centreville for a reunion. We’re still accepting families through the Institute of Child Study until January of next year if anyone is interested.

BLOOM: Have your thoughts about disability changed?

Paul Alcamo: I’ve always had the belief that first and foremost these are children. Honestly, as I’ve gotten older and become a parent, you reflect on these things and it hits you a bit more. If anything, it’s made me someone who is even more emotionally committed to these kids. My attachment to these kids goes even deeper.

Thursday, September 22, 2016

In Brazil, a 'disabled chick' draws about stigma, love

On her blog, Vanessa Krubniki tags this comic under "love," writing: "...I have worried myself sick about how I am supposed to convince someone to date a disabled chick who can't even tell a joke. You might think that there are people out there who enjoy a darker approach to things and I supposed that is true, but the fact is, everyone likes fun people. And I, I have too much real life in me, too much blood under my fingernails."

By Megan Jones

When Vanessa Krubniki creates a comic, it’s more than just a drawing: it’s a lesson, a memoir, an emotional outpouring. The 23-year old psychology student from Curitiba, Brazil has spinal muscular atrophy, and uses her artwork to capture what life is like for young women living with physical disabilities.

The comics follow a character named “Cassie Q,” detailing her interactions with family and strangers and her thoughts about everything from love and work to depression, stigma and self-esteem.

Originally a painter, Vanessa first tried to her hand at drawing comics about a year ago. “It started off as a game,” she says. “Something to do for fun.” But as she showed more friends her work, they encouraged her to post her drawings online.

Today, Vanessa regularly shares her comics on her blog, which has gained followers from Canada, the United States and Brazil, among other places.

She readily admits that while her character has a different name, they’re very much the same person: everything that happens in her comics has happened to her in real life. For that reason, her artwork is extremely personal. It allows her to vent about the things that frustrate her, and helps her to process the circumstances that make her sad.

The personal nature of her work has resonated with readers. Vanessa says she’s spoken with other young people with disabilities who have connected with her online after checking out her blog. “Lots of people say the comics make them feel understood,” she says. “It’s really special to hear that.”

Vanessa knows what it’s like to feel like an outsider. In Brazil, she says, disability is largely misunderstood, and many people with special needs lack support.

She’s not the first to make this observation. Cities in Brazil have long been criticized for their low level of physical accessibility. According to a 2015 BBC article, only seven per cent of working-age Brazilians with disabilities have completed any kind of higher education, and only two per cent are a part of the workforce. And as NPR reported the same year, a poll conducted by IBDD, one of the country’s disability advocacy groups, revealed that a staggering 80 per cent of people with disabilities didn’t feel like respected citizens in their home country.

When these factors pile up, Vanessa says, many young people with disabilities wind up feeling alone. She herself isn’t in touch with any local disability activists, and says she only has one other friend with special needs who she talks to regularly.

In order to cope, she, like her readers, has turned to the Internet to connect. Vanessa says she reads articles by disabled journalists which help build up her own activist framework.

“Hearing life stories from the perspective of someone with a disability validates my experiences,” she says. “I often feel very disconnected, but reading these things, I get a sense of belonging, and I can connect my experiences to a larger oppressive system.”

Knowing that others are looking to her comics as a point of relation, Vanessa fears that her art isn't uplifting enough. There’s a pressure on people with disabilities to be inspirational, she says, particularly if they’re building a public presence. But a sunny outlook isn’t always realistic. There are days when Vanessa finds it difficult to be hopeful, and she doesn’t shy away from that in her work.

As a result, her comics can sometimes seem bleak. In a description that accompanies her post “The Complicated Life of a Bug,” for example, she writes: “Everyone has their little web of aggravators, things that stop them from moving forward…. Sometimes with disabilities, this web gets so detailed and so layered that it might seem impossible to move. I fear that one day it will be impossible to move.”

With posts like these, Vanessa says she occasionally worries that she’s reinforcing the idea that life with a disability is automatically a bad one. “I think many of my experiences with a disability have been negative so far,” she says. “But that’s not how it has to be. Society has to change.”

The topics she addresses most frankly, perhaps, are sex, intimacy and love. Like many other 20-somethings, the concept of dating takes up a lot of mental energy: one of her biggest hopes right now is that she’ll find a romantic partnership soon. Unlike most though, she doesn’t feel she can’t openly discuss her needs with very many people. In fact, most people, Vanessa says, assume she doesn’t care about sex or relationships.

“It gets overwhelming when you have a very central longing and you can’t talk about it,” she says. “People with disabilities don’t really have room to address those needs. My comics are a way to bring that out into the open.”

Whether it’s through expressing sexual desire, dissatisfaction with social structures or frustrations with family and friends, Vanessa encourages others to elevate their own voices.

“Young people with disabilities should take their power back,” she says. “Standing up for yourself is hard and can be very stressful. But sometimes you have to act against the status quo. If something isn’t working for you, don’t just let it go.”

The comic below, called Cassie's Folding is tagged under "depression." 

"In my life I have been folded. It's kinda like when it's simply not okay to be you, and not even knowing what to say or what to dress, because any sense of confidence has been systematically chopped off. In my life I have been folded. In half, and half, and half, and half. And what I had left was a Q for a signature."

Tuesday, September 20, 2016

Disabled teen plays lead role without speaking? Hello 'Speechless'

By Louise Kinross

On Sunday, New York Times TV critic Neil Genzlinger wrote about "Speechless," a new ABC family comedy set to air tomorrow.

The series created a buzz in the disability community because 16-year-old JJ DiMeo, one of the main characters, has cerebral palsy and doesn't speak. 

Genzlinger tells us that he understands this world personally because his daughter, who has Rett syndrome, is non-verbal. 

In fact, Genzlinger says he watched the pilot episode while at Camp Communicate in Maine, which is for kids who use voice devices to communicate.

Not only is the show unique in casting a non-speaking person as a central character, but Micah Fowler, the actor playing JJ, has cerebral palsy himself.

Fowler is able to speak, but in the show he communicates by selecting letters to form words with a laser pointer attached to his glasses. A partner then reads them. 

Whoa! A disabled person playing a lead role and communicating with technology that's stigmatized in the wider world? This is earth shattering.

Scientist Gail Teachman, who worked as an occupational therapist for 20 years at Holland Bloorview, has researched how people tend to exclude high school students who use voice devices. In a BLOOM article, she notes that even when a teen gets good at using a device, out in the world "People don't stop, they don't wait, and they don't value what [the person has] to say."

To cast JJ, who labours to communicate, is as bold as "television's first single mother or black lead or transgender storyline was," Genzlinger says.

Watching the pilot at his daughter's camp, Genzlinger says the consensus among staff and campers was that whoever wrote the sitcom "gets it." And apparently he does. 

Creator Scott Silveri grew up with a brother who was non-verbal, Genzlinger says. He told Genzlinger he wasn't interested in a story "about" disability, but rather, about a family and the interplay among its members when one has a disability. 

Authentic representation of disability on TV, the stage and in film is a hot topic. 

In Los Angeles, the musical The Hunchback of Notre Dame is playing with John McGinty as the first deaf actor to portray Quasimodo, more closely resembling the deaf character in Victor Hugo's novel. For each of Quasimodo's songs, a singer joins McGinty on stage, while McGinty signs the song in American Sign Language. 

"One of the things I feel very connected with is sometimes I do feel excluded, and I do feel like an outcast," McGinty says in this piece in LA Weekly. "It's one of those things of being a deaf individual in a hearing world."

McGinty says he relates to the inner world of Quasimodo, even if he doesn't have similar physical traits, such as a crooked spine.

Earlier this year, I read this fascinating piece about the movie adaptation of R. J. Palacio's bestselling book Wonder, about a 10-year-old boy born with unusual facial features. "I won't describe what I look like," he says on the first page of the book. "Whatever you're thinking, it's probably worse."

The book is a fabulous account of what it means to look different in our society, and how others come to see him.

But instead of casting a boy with a craniofacial disorder, an actor will spend hours having his face altered with makeup and prostheses, then "fake" a speech impediment.

"We are inspired by seeing real minorities on the screen, not Caucasian actors cast as ethnic characters, and not actors pretending to have a disability or physical difference," writes Cynthia Murphy, who has Treacher Collins syndrome. "We are just asking for an accurate picture of how we live on a daily basis, and to see and feel the real deal."

I couldn't have said it better. 

Genzlinger in The New York Times says he hopes Speechless "breaks down the sense of isolation that envelops families like the DiMeos."

Making those families visible in an authentic way is a first, long-overdue step. We all long to see ourselves in mainstream storylines.

Thursday, September 15, 2016

When medicine doesn't go according to plan

'In the first couple of months of being at Bloorview I really had hope…that I would get my life back…As I was there longer I started to realize that the changes in my body aren’t easily fixable.' 
Maddy Workman, above right, studying chemistry in the Bloorview School.

By Louise Kinross

Maddy Workman, 16, has spent five months at Holland Bloorview after a hip surgery that wasn't successful. She’s since had a second surgery and will have a third in the New Year. In Life is a Climb she writes about having to come to terms with pain and muscle spasms that make it hard for her to do the things she used to do.

“Before the hip surgery I was a regular teenager who needed a wheelchair to get around, but I didn’t need a bunch of help,” Maddy says. “I had really good control in my right arm. I could draw, I could paint. And I loved to bake.” Her favourite concoction? Macaroons. 

Maddy has a penchant for purple and pink. Her wheelchair is purple, her iPad cover pink, and her clothes a mix.

Maddy now copes with uncontrolled movements in her right arm that make it difficult to do everyday things. “The more I try to do something with my arm, the more my body resists it,” she says. “The doctor said the pain in my hip is causing spasms in my arm. If I want to do something as simple as brush my teeth, my arm doesn’t want to do it.”

Accepting these changes, and trying out adaptive equipment for cooking and other activities, has been tough, Maddy says.

“For me, I need to talk it out verbally when I’m frustrated,
” Maddy says. At Holland Bloorview that’s often been with social worker Val Lusted. “She’s really good. She says I go through stages of frustration and sadness, but then I come out on the other side.”

Maddy advises other kids in rehab to accept their emotions. “When you’re sad or frustrated or angry you’re allowed to be like that. But don’t stay in that place forever. When I found out the news that I needed a third surgery on my hip, I asked ‘why did this happen to me?’ I was not happy—for Friday, Saturday, Sunday, and a little bit of Monday. But then I got better.”

This weekend Maddy returns home to Ariss, Ont. where she's in Grade 11. In January she'll be back for another surgery. “I can’t wait to get back to my school and family,” she says. Read her poem below.

Life is a Climb

By Maddy Workman

In the first couple of months of being at Bloorview I had hope for the first time in a while,

Hope that I would get my life back.

I had hope that I would be a regular teenage girl again who just needed a wheelchair to get around.

As I was there longer and longer I started to realize that the changes in my body aren't easily fixable and that I have to figure out how to deal with the changes.

Change is very hard for me, and I never really had a huge change in my life.

Change is hard physically,

Change is hard emotionally,

Change is just hard to deal with.

But, if I want to be happy I have to deal with the changes and get though them, because life's a climb.