'I'm trans because that's who I am'

By Louise Kinross

Logan Wong is known for his stylish bow ties. But in this photo, he's wearing a shirt with the colours of the transgender flag: blue and pink, the traditional colours for boys and girls, and white, representing people who are intersex, transitioning or a neutral or undefined gender. Logan is a transgender man who has cerebral palsy and grew up receiving services here. He's also the co-chair of Holland Bloorview’s youth advisory, and works as a host to inpatients in our teen lounge. He’s going into his fourth year of social work at Ryerson University. We talked about his experiences and how Holland Bloorview can better support young adults like him.

BLOOM: What does it mean to be transgender?

Logan Wong: It’s when the gender you’re assigned at birth doesn’t match with what you believe to be your gender. Trans is an umbrella. It can mean you’re a guy, you’re a woman, or you’re both. There are new labels coming up every day.

BLOOM: How did you recognize you were transgender?

Logan Wong: I came out publicly last September. But I’ve known I was trans since I was seven. When I was that age I presented as a male, and I was really self-conscious about my body. I don’t think anyone—including me—recognized it as being trans at the time. I thought I liked boy stuff, and I wouldn’t leave the house in a dress.

I have two older brothers. We have a home video of my birthday party when my parents gave me a Barbie. I threw it on the floor and started playing with my brothers’ hot wheels.

My parents recognized how terrible I felt about myself, and how much of a struggle it was for me. And my mom got better at buying gender neutral clothes and clothes that weren’t pink.

BLOOM: What’s been the greatest challenge?

Logan Wong: Definitely finding accessible and trans-friendly health-care, and my name change stuff and government forms. Changing everything from my name on my insurance to my name at school are examples.

I’m lucky to have finally found a doctor that is really educated in both transgender stuff and disability—which is really rare. I go to Parkdale Community Health Centre, and I had to transfer my whole primary care over there to be able to access testosterone. Before that, when I saw my regular family doctor, they were going to refer me to a hormone specialist. But there was a year wait list.

BLOOM: What’s been the greatest joy?

Logan Wong: How much pride I have, and how much I can use my experience, both as trans and having a disability, as representation for both communities at the same time. I really appreciate that opportunity.

BLOOM: What advice would you give parents whose disabled child is questioning their gender?

Logan Wong: I would say listen to what they have to say about themselves. Don’t make assumptions about what they’re thinking. Let them express themselves the way they want to.

BLOOM: Did having a disability make it easier or harder to accept your transgender identity?

Logan Wong: In some aspects it made it easier. I’m in a wheelchair and no one expects me to stand up and pee. So I don’t have to worry about facing harassment in the bathroom. I usually use a single stall bathroom.

Growing up, my life didn’t revolve around the fact that I had a disability. My parents believed that my life shouldn’t just be about therapy. That made me willing to explore other parts of my life and identity, so it made it easier for me to recognize who I am.

BLOOM: Is there anything about having a disability that made being transgender harder?

Logan Wong: Making people realize that I’m not trans because I have a disability, or because of other things that happened in my life. I’m not trans because I’m oppressed by other things, or because I’m attention-seeking. I’m trans because that’s who I am.

BLOOM: How does the disability community view transgender people?

Logan Wong: I definitely find more community within the trans and queer community. I do associate with the disabled community, but I’ve found able-bodied friends who are trans and queer are way more accepting of my identity. I think it goes back to some people thinking that I’m trans because I want attention.

I do feel I’m more welcomed in the trans and queer community. They don’t see my disability as a thing. It’s part of my identity, of course, but they don’t emphasize it as much as it’s focused on in the disability community.

Do I necessarily tell new people with disabilities that I meet that I’m trans? Not necessarily.

BLOOM: What would you like our staff to know about how they can best work with youth who are transgender?

Logan Wong: Ask them what their name is, and what pronouns they use. It’s very simple. Recognize that the documents you get might not have the name that they prefer on it. Don’t take the paper as the most important thing. Value what they say.

BLOOM: Have you ever received health care that wasn’t respectful or affirming of who you are?

Logan Wong: I’ve only had one experience, and it was recent. My cerebral palsy specialist at an adult hospital was blatantly transphobic.

BLOOM: In what way?

Logan Wong: He refused to refer to me with my now legal name, because he knew me before. I’ve chosen to not go to that person since. I called and explained that I was transferring to another specialist, because I don’t want this happening to another person.

BLOOM: What could we do at Holland Bloorview to better support youth who are gay, transgender or bisexual?

Logan Wong: I like the steps the equity, diversity and inclusion committee is taking.

BLOOM: Are you on that committee?

Logan Wong: Yes. They’ve encouraged staff to put their pronouns in their e-mail signature, which is really important, and created gender-neutral bathrooms. Instead of using mom and dad, just say parents. We have to think about it, not only in terms of children and youth, but the parents who are potentially trans.

BLOOM: What about creating some kind of peer support here for clients who are transgender?

Logan Wong: I think support groups, with the right intention, can always be a good opportunity to express the values of Holland Bloorview.

BLOOM: Why did you decide to be a youth leader?

Logan Wong: I decided to become a youth leader before I publicly transitioned. I wanted a platform to advocate for people with disabilities, and specifically youth voices. I feel we don’t hear enough from youth about their opinions on what’s happening in the disability community, or politics, or the world.

BLOOM: What are your hopes for the future?

Logan Wong: I’m hoping to be a social worker. I haven’t confirmed it yet, but I’m hoping my placement will be at the Ronald McDonald House. I’ve gained a lot of clinical experience in my work here, and I’d like to continue that in another space.

After I graduate I’m thinking about master’s programs, both social work and women and gender studies.

In Toronto, there are lots of trans-specific supports at The 519. 

Read More

How a tattoo made my disability cool

By Tim Rose

Hi there! My name’s Tim and I have a disability. But this article is not just about living with that disability, or about how it impacts my life. It's about the importance of celebrating disability and how it has led to very good things for me. It's also about some ink that I wear with pride on my arm.

Before going further, let me introduce myself more fully. I was fortunate enough to be born with cerebral palsy spastic quadriplegia. Growing up, I used to get frustrated with the limitations that my disability put on me. I couldn’t play sports, I couldn’t stay up past my parents’ bedtime and I couldn’t always play how I wanted to play. For years, these limitations bugged me. But then something clicked in my head: I needed to embrace my difference, not let it beat me. No matter how frustrated I got, it was a part of my life and it was up to me to make it cool. I did it with a tattoo.

Yup, almost five years ago I decided to embrace my disability by getting the blue wheelchair emblazoned on my right arm in permanent ink. I had talked about it for years as a way to deal with some of the challenges that my disability posed. Not only did it look awesome, but it made me feel like I was taking ownership of my difference. Yeah, my body is different from most, but that difference is not something to hide from. When I did it, I wrote a blog that has today inspired me to revisit what it meant to me.

You will be happy to know that, all these years later, I still love it. In fact, I love it for so many more reasons than I did when I first had it etched into my pasty arm (beyond the obvious that it looks great). For a start, the day I got my tattoo was the day I met the amazing woman who is now my wife. For another, it represents my disability positive career turn. I now run a business called Disability Positive Consulting where I help businesses, schools and health workers look beyond deficits and gain a new appreciation for what it is to live with disability. My tattoo reminds me every time I glance at it why I’m doing what I’m doing. Lastly, it has been a huge confidence boost for me and the way I embrace my difference.

When I first did it, I talked about how it helped me define my disability. Here is a snippet from that original post:

And so my tattoo is my way of taking control of my disability and my identity. I am branded now, not by society, by my own choice. My disability does not define me, I define it. My physical limitations are most certainly still here, but I have grabbed my disability and made it a trait to embrace. The tattoo, to me, represents a very true part of me. Yes I have a disability, but on my own terms.

In reading this over again, I'm struck at how this was the seed for me to begin to think positively about disability. It was the step I needed to take to start this amazing road that I’m on. As I look at the tattoo now, I feel that same empowerment and strength, it’s just reached a new level. I have now devoted my career, and taken the leap as an entrepreneur, in large part thanks to that tattoo and the way that it freed me.

Let me be clear that I'm not saying to be “disability positive” you have to have it inked in your skin. But whatever you draw empowerment from, hold on to it and celebrate it. Whether it is a family member, a movie or even a particularly hot article of clothing, embrace the feeling that it gives you. It just so happens that my mark is a tattoo. Remember, having a disability does not mean your life cannot be filled with awesome experiences. I had struggles, in fact I still do, but I also have a lot of opportunities because of my disability. It’s okay to get frustrated, but hold on to whatever you have that makes you feel good.

Photo by Jamieson Dean

Tim Rose is a Toronto-based disability activist, writer and speaker who believes in celebrating disability in all its forms. Driven by this idea, Tim founded Disability Positive Consulting, an innovative business to promote positive ideas around disability in businesses, schools and communities. 

Read More

Understanding disability: Black, white or shades of grey?

This painting by Bryan Pearce is part of a 38-image collection called BBC's Your Paintings.

By Louise Kinross

I'm intrigued by how such divergent perspectives on disability can pop up on social media in the same day.

Yesterday a colleague sent me a link to Tom Shakespeare's essay series on BBC Radio 3 called The Genius of Disability. 

Shakespeare, a British writer and bioethicist, looks at the relationship between creativity and disability through a handful of disabled artists. "The stories I have found show that disability is no bar to success if an individual has talent and drive, and probably a fair share of luck," he says. Shakespeare holds these individuals up as role models for disabled people who have made "great creative contributions despite or because of their illness or impairment."

Something about the title, The Genius of Disability, hit me the wrong way. Isn't disability a hugely vast experience that varies from person to person, and even within a person, over time?  

One of the artists is British painter Bryan Pearce, who was born in 1929 in St. Ives, Cornwall and had an intellectual disability.

In his piece on Pearce, Shakespeare asks: "Does an artist have to be clever?" Then he questions what happens when a person "can't fully reflect on what they're doing... Can you make great art by accident?"

I know nothing about Pearce's disability, but to suggest that he couldn't reflect on what he was doing, or that the paintings you see on this page were created by "accident," is pejorative and patronizing. Perhaps Pearce didn't think about his work in the same way that a person with average intelligence would, but maybe his experience of the world gave him a unique way of seeing and depicting things.

Then I thought about Shakespeare's use of the word "accident," implying that what Pearce produced was somehow random.

And then I couldn't help thinking about how random or "accidental" a large part of talent is, as opposed to being something you develop through hard work, whether you have a disability or not (I know, no one wants to hear this. Everyone wants to believe that they "deserve" their success by working so much harder than others. Everyone wants to pat themselves on the back). A large part of success, I believe, comes from natural ability that a person is gifted with at birth. Yes, they have to develop it, but they start with the tools. Some people, because of the types of disability they have, do not start with the same tools. There isn't any justice in this.

Another artist Shakespeare profiles is Lucy Jones, a British painter with cerebral palsy and dyslexia. He notes that Lucy doesn't want to be "classified as a disabled artist." I thought this was interesting, especially since Shakespeare was suggesting that disability itself fuelled artistic genius.

Growing up, no one could understand why Jones couldn't read, Shakespeare reports. She did well in art but not in her other courses. At some point she got a device that allowed her to express her thoughts by dictating them, as opposed to writing them down, and Shakespeare says: "Now she was getting good grades and feeling like a real person."

Does academic achievement make one a "real person?" Does that mean the painter Pearce, with the intellectual disability, was not a real person?

It seems we often fall into this black and white way of describing disability. Some people, like Shakespeare, who has a form of dwarfism, describe it as an advantage, while others look at it only as a deficit. We want to pin it down, not see it as fluid.

At the same time I was looking at Shakespeare's essays, I saw this piece by a parent of two children with Down syndrome. The mom writes about attending a conference for people with Down syndrome, and how she couldn't help feeling like one of her daughters, who has more significant disability, was excluded. "Everywhere you turned there were presentations about teens and adults with Down syndrome who'd exceeded all expectations," she writes. This included people getting their driver's licenses, going to college and getting married. There were also "videos of dancers, musicians or athletes with Down syndrome." While happy for their success, where did her daughter fit in? Was this an event for high-achievers only, she wondered? Were people now being labelled within the disability community in a hierarchy of value? Was it possible that a person with Down syndrome could attend a conference about and for people with Down syndrome and feel invisible?

The author questions whether we're "trying to sell everyone a better, more desirable version of the child and their disability."

Which brings me to what I thought was a brilliant post by a person with autism and physical disabilities. It's about how "able" folk try to separate her from her disabilities. These are people who constantly tell her things like: "Don't let your disabilities become your identity" and "You're a person with autism, not an autistic person" and "Your disabilities don't define you."

The truth, she says, is that "however much I try to ignore them, my disabilities really do limit me." Why should she have to deny that part of her experience or pretend it doesn't exist? "When people dismiss that, they often end up blaming me for my limitations," she says.

Isn't that what happened to the mom who attended the Down syndrome conference only to feel her child couldn't measure up?

Rather than a source of creative genius, this woman with autism sees her disabilities as physical limitations and a brain that works differently from most. But she's not "giving up, showing low confidence or calling myself weak...After a lifetime of being told my disabilities are weaknesses, I'm being strong without denying them. This is empowerment."

Which brings me to an interesting discussion I participated in yesterday at lunch here at Holland Bloorview. It was about how advocacy skills can be taught to, and evaluated in, students training to work in children's rehab. In discussing advocacy in relation to children with disabilities, the term "self-advocacy" often comes up, and is held to be an ideal. The idea is that we can empower a person with disability, or give them the tools, so that they can speak for themselves. It's similar to our focus on independence as being the preferred state of being for people, with and without disability. 

But there will always be some children with disabilities who are not able to advocate for themselves (because they don't communicate in conventional ways or have multiple disabilities). They need parents and clinicians and others around them to be their voice. In these cases, has a failure occurred? If my child is supposed to be a self-advocate, does it mean that as a parent I've done something wrong, or not done enough of something, if he or she isn't?  

Which brings me back to our tendency to describe disability in black and white ways, to assert that it means this, or it means that, but not both. And to take such strong positions, as if we have to prove to the mainstream world that there is value in a life lived with disability. 

In discussing the painter Pearce, Shakespeare says "people with cognitive disabilities still have value and can do work of value."

He says it, but as an academic, and based on some of his comments, I'm not sure he really believes it, or believes it uniformly for all people with intellectual disabilities, regardless of ability.

Rather than seeking out famous, high-achievers like Pearce, I would rather Shakespeare had taken the time to find stories that show the value of a range of people, including those whose worth could only be shown through their relationships with others, not by what they can "do."  

Read More

What's in a name?

By Louise Kinross

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

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

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

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

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

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

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

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

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

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

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

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

Some childhood disability researchers have adopted this approach. 

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

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

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

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

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

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

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

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

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

Read More

What's in a word? Stigma

The other night I found Ben in bed, his face behind a book that was jiggling about because he was laughing so hard.

The book was The Tale of Benjamin Bunny by Beatrix Potter.

It's a tiny hardcover book my dad read to me as a child. My dad was a wonderful storyteller and hearing him read was like listening to music. On the floor beside the bed was The Tale of Peter Rabbit.

Ben has always loved the antics that Beatrix Potter's animals get up to. He wouldn't let me see what page he was on, but I figured it was something about Benjamin and Peter getting into trouble in Mr. McGregor's vegetable garden.

After he went to sleep I flipped through the book and came to this illustration of old Mr. Bunny (Benjamin's father) lunging at the cat who's been sitting, for five hours, on a basket under which Peter and Benjamin quiver.

Old Mr. Bunny had no opinion whatever of cats. He took a tremendous jump off the top of the wall on to the top of the cat, then cuffed it off the basket, and kicked it into the green-house, scratching off a handful of fur. The cat was too much surprised to scratch back. 

That was probably the page I thought.

Ben has always loved the absurd, the over-the-top, the darkly humorous.

When I saw him that night, I couldn't imagine anyone more happy or caught up enjoying a moment.

And who am I to question that his way of life is any less valuable because of his IQ, I thought, because he's not thinking what average 18-year-olds do.

Today is the fifth year of Spread the Word to End the Word, the campaign by Special Olympics to get people to stop using the word "retard" because it's a demeaning slur against people with intellectual disabilities.

I'm tired and not a little disheartened with the arguments put forward, often by the brain elite, that when words like retard, imbecile and moron are used, the speaker doesn't have a person with intellectual disability in mind.

Come on.

Everyone knows that these words have a particular zing because they were once descriptors for people with intellectual disabilities. As the most stigmatized, hated and feared group on earth, calling someone a retard, imbecile or moron is the ultimate put-down.

I remember being asked to fill out a survey at a large children's hospital about prenatal testing. The survey was being conducted by students who were training to be genetics counsellors.

One of the questions asked whether, as a parent, I would terminate a pregnancy because the child had mental retardation and would have no quality of life.

The question was problematic because of its simplistic construction, equating low IQ with a wasteland worse than death.

High IQ is not correlated with a good and satisfying life, and neither can low IQ be assumed to suck the richness out of life.

So next time you're looking for a word to heap ridicule on someone—stop... and think—and leave people like my son alone.

Read More

Has your doctor heard about these 'F-words?'

By Diane Kay

About a year ago, I contacted Canadian researcher and developmental pediatrician Dr. Peter Rosenbaum. I wanted to ask his advice on the pros and cons of walking in children with cerebral palsy.

My son Alfie, 7 (above centre), has significant challenges because of cerebral palsy. He wants to walk, despite using what many call an abnormal pattern of movement. Alfie LOVES walking with our support or a walker. It isn't functional, we’re told, but his slow and excited steps give him a hard-to-beat feeling of independence that he may not experience when he's older.

Our government-funded physios say walking is bad for Alfie's hips because his tight muscles pull him into an unusual gait. They say Alfie should spend most of his time in a seating system or wheelchair or use a standing frame (which Alfie hates). On the other hand, private physios say Alfie should have a walker because he can take steps and enjoys it.

In trying to decide whether we should encourage Alfie to walk, Peter suggested I read a paper he and a colleague had written called The F-words in childhood disability: I swear this is how we should think!

The F-words are function, fun, friends, family, fitness and future. The words are based on the World Health Organization’s International Classification of Functioning, Disability and Health (ICF), which is a way of thinking about health that applies to everyone, not just those with disabilities.

The ICF framework is a diagram that shows how body structure and function, activity, participation, environmental factors and personal factors are interrelated and influence a person's health. No one factor is more important than another.

Peter and Dr. Jan Willem Gorter took these concepts and translated them into the simpler, family-friendly F-words, which they argue are also connected. These words convey what’s important to children with disabilities and their families in a way that I could relate to.

For example, if a family is having emotional or financial problems, this can impact on a child’s ability to function and have fun.

If a child isn’t able to get a key piece of technology, it has ripple effects on what a child can do.

And sometimes fun is just as important a reason for doing things as function. It was this description in Peter's paper about the word function that gave us confidence to support Alfie’s walking, even if it isn't the most efficient way for him to get around:

“We used to believe that from a very young age children's everyday activities… had to be done ‘normally,’” write the authors. “We have likely inhibited children's development by stopping them doing things considered to be outside the normal—literally ‘abnormally.’ One need only think of preventing children with cerebral palsy from pulling to stand and walking in a crouched gait or expecting children to communicate only with spoken language… Performance improves with practice, and hence our primary emphasis in counselling and intervention should be on promoting activity.”

And in writing about the importance of fun, the paper says: “…do not worry about expecting children to do things ‘normally.’”

It notes that youth with disabilities participate less in sports, hobbies or even hanging out at the mall than their peers. The simple answer is to ask children what they want to do… “It is the doing, rather than the superior level of accomplishment, that is most meaningful to most children,” they write.

We had always erred on the side of “if Alfie enjoys it, then why not?”

But reading these words in black and white in a research paper made us realize that it might be better for Alfie all round if he does do things—in whatever way he can.

I wonder whether professionals consider the effect that function has on having fun and participating and making friends? Or the way having fun can help build abilities?

The F-words, and how they’re interconnected, make sense to me, but I haven't seen the ideas applied by professionals with Alfie as much as I would have liked.

In thinking about my role negotiating with service providers, I decided to create an “F-words agreement” that we would share with professionals. This laminated print-out would be Alfie's document: he owned it, and he would show it at clinic visits as a starting point for discussion. To me it represents an informal but serious pact between the child and whoever they rely on for support. I see the F-words as a minimum standard, especially when decisions about services and interventions are made.

For example, under Function in Alfie's agreement it says: “I want to do stuff. It may not matter if I don't do it like everyone else.”

Under Family it says: “They know me best and I trust them to do what’s best for me. Listen to them. Talk to them. Hear them. Respect them.”

And under Future: “Tomorrow is what I make of today. I don’t want opportunities to pass me by. Help me achieve what I can today.”

We used the agreement for the first time when Alfie needed surgery to reduce his spasticity.

During a pre-op physio assessment, we shared why we thought it was important for Alfie to regain his pre-surgery skills.

“But Alfie won't be able to keep up with the other children on the playground if he's walking,” one of the therapists said.

I said we thought it was also up to other children to adapt their games to include Alfie.

We showed them the agreement, but to our surprise, the therapists didn't respond. There was a loud silence.

More recently I wrote to Alfie’s multidisciplinary team to ask for their specific feedback on the agreement, but I haven't heard anything.

Being cynical, I wonder if there’s a reluctance to implement these ideas because it would commit service providers and funders to doing more?

I hope other parents will create an F-words agreement with their child—one that could evolve with a child's development and interests. My initial idea was that you could issue it to your child like a passport in a plastic wallet or holder or on a keychain.

The message behind the F-words is that children with disabilities have a right to a future. The future may be tomorrow, but what determines its quality is what our children do today. Now when we're told something Alfie wants to do “isn't functional,” I'm confident in my reasons for saying “Sod functional, it's fun!” And I have the evidence in the ICF to back it up.

Diane Kay lives with her husband and two boys in North West England. She’s a volunteer for a charity that provides advice on special education and disability discrimination. Diane co-presented a workshop called “The F-words in childhood disability: Why is it so hard to do in the real world?” in Pisa, Italy. Her son Alfie goes to the same mainstream school as his brother Laurie, 5, with one-to one support. In addition to walking, Alfie loves swimming, music and going up and down in elevators. Watch a video of Peter explaining the F-word concepts.

Read More

Let's rethink 'normal' in children's rehab

By Barbara Gibson

Rehab professionals want to help improve the lives of children with disabilities. But they sometimes struggle with two conflicting visions of how to do that.

Is their role to "normalize" bodies that are impaired, or to promote acceptance of diverse bodies and abilities?

As a physiotherapist and child disability researcher, I know that “normal” is often taken for granted as a benchmark to assess quality of life. To rate life quality, we often measure the amount of help a person requires to carry out daily activities. Our questionnaires assume that the more you do on your own, the better life will be. So walking independently gets a higher score than walking with a cane. And walking with a cane rates higher than using a wheelchair.

By assessing physical abilities alone – and ignoring social influences on wellbeing like relationships, security and expectations – these measures reproduce cultural biases about what constitutes a good life and inadvertently reinforce exclusion. On these measures children with disabilities are marked as “other” and in need of intervention.

Of course cultural values about disability don’t originate in rehab. They reflect societal values.

Developmental psychology is largely responsible for the concept of the “normal child.” Bodies which can’t be fixed through surgery, therapy or medications fall outside the limits of normal development and bear the stigma of pathology.

New parents are a good barometer of mainstream ideas about disability. Many parents of infants with disabilities come to rehab with high hopes that surgery, drugs and intense physio will cure their child – or dramatically reduce differences – and the willingness to “do whatever it takes.”

Because of the value placed on normality, parents – particularly mothers – find themselves caught between pushing for intervention and defending their child’s worth. They are put in the paradoxical position of saying to their child “I love you as you are” and “I would do anything to change you.”

When parents have unrealistic expectations, rehab therapists struggle with how to support these families while not destroying their hope.

Walking is an example of a rehab goal that is a taken-for-granted good in children’s rehab. Intense walking training is built into the system in a way that largely precludes parent decision-making about whether or not to have treatment. In Canada, preschool children routinely receive intensive publicly funded standing and walking therapy two to three times per week. Use of walkers and powered wheelchairs may be discouraged until other options have been exhausted. Many parents seek out additional private therapies – often at great monetary and time costs.

The focus on walking (from formal therapy to home and community programs to conductive education camp) can fill up days – leaving children little time to just be kids.

Because their bodies have been identified as in need of fixing, children themselves come to understand that they fall outside an accepted norm. In our culture, in addition to conveying mobility, walking and “standing on your own two feet” symbolize a whole set of moral virtues – including dignity and autonomy. The drive to walk can create an overfocus on bodies and therapy.

And even with intense therapy, some children won’t ever become walkers or will use wheelchairs to get around some or all of the time. (As they age, we are better able to predict the walking abilities of children.)

Studies with self-reports from children show they are keenly aware of how others stigmatize them. Interestingly the same studies find children don’t necessarily internalize this stigma or identify themselves as disabled. This may suggest that children are less concerned with walking and more concerned with being able to get around.

A study of adult wheelchair-users revealed a distinction between the way they viewed their wheelchair positively as children, and the negative views their parents held of the wheelchair. Many stopped associating “not walking” with a medical condition. Wheeling became a normal mode of movement. This shift in attitude helped wheelchair users gain a positive identity and achieve life goals in spite of the stigma attached to wheelchair use.

In my own research with children with cerebral palsy, children were conflicted and ambivalent about the value of walking. When choosing whether to walk, crawl or wheel, they considered the amount of energy needed, the activity, the environment and their preferences. They resisted negative views of disability by expressing pride in the speed, colour or features of their devices and in identifying themselves as wheelchair users.

However, children over the age of 11 expressed that it was important to be identified among peers as “someone who can walk.” These findings help demonstrate how children are socialized to divide the world into walkers and non-walkers. They learn a dominant message, reinforced by years of rehabilitation, that non-walking and non-walkers are problems to be fixed.

Promoting acceptance of diversity and difference are given short shrift in rehab compared to the amount of time, energy and money spent on achieving, or moving closer to “normal:” normal bodies, normal behaviours, normal movement, normal activities.

There is positive change in the way the rehab world views intervention. The introduction of the World Health Organization’s International Classification of Functioning, Disability and Health puts the rehab focus on social participation rather than fixing bodies, and acknowledges that function results from many influences.

But the politics of disability are still largely absent in rehab talk.

This is where cross-pollination between rehab professionals and disability studies researchers is invaluable. Rehab researchers who are immersed in disability studies (like me!) are in a unique position to challenge rehab assumptions from within. We need to encourage our colleagues to think differently. And rehab professionals have a wealth of knowledge and experience to help children reach their full potential – knowledge that isn't always recognized or appreciated in the disability studies community.

Barbara Gibson is an associate professor in the Department of Physical Therapy at the University of Toronto, and a senior scientist in the Bloorview Research Institute.

Read More

Is difference an illness, an identity, or both?

I'm ferociously reading Far From The Tree by Andrew Solomon. His insights on how parents find meaning in raising children with disabilities and other differences is fascinating. I've marked up the first chapter with lots of underlining and asterisks, but this passage really made me think.

"Anomolous bodies are usually more frightening to people who witness them than to people who have them, yet parents rush to normalize physical exceptionalism, often at great psychic cost to themselves and their children. Labeling a child's mind as diseased -- whether with autism, intellectual disabilities, or transgenderism -- may reflect the discomfort that mind gives parents more than any discomfort it causes their child. Much gets corrected that might better have been left alone.

..."We often use illness to disparage a way of being, and identity to validate that same way of being. This is a false dichotomy...Many conditions are both illness and identity, but we can see one only when we obscure the other. Identity politics refutes the idea of illness, while medicine shortchanges identity. Both are diminished by this narrowness.

"Physicists gain certain insights from understanding energy as a wave, and other insights from understanding it as a particle, and use quantum mechanics to reconcile the information they have gleaned. Similarly, we have to examine illness and identity, understand that observation will usually happen in one domain or the other, and come up with a syncretic mechanics. We need a vocabulary in which the two concepts are not opposites, but compatible aspects of a condition. The problem is to change how we assess the value of individuals and of lives, to reach for a more ecumenical take on healthy. Ludwig Wittgenstein said, 'All I know is what I have words for.' The absense of words is the absence of intimacy; these experiences are starved for language."

Louise here again -- I've often felt I don't have the words to describe my experience with a son who won't achieve conventional success, but who has a rich and valuable way of being and from whom I've learned the most about what matters. As Solomon says: "These experiences are starved for language." We don't have the vocabulary or imagination to articulate them because they fall outside mainstream thinking and language. We need new words -- new ways of defining beauty, wisdom, purpose, movement and strength that capture the diversity of how our children express these things.

Read More

Coming clean on the word disability

I think my best writing happens when I most don't want to write about a topic.

Perhaps that's because it gets at my own ambivalence about the topic and my desire to mask that vulnerability by remaining silent. It means I'm confused and I don't know exactly how I feel. All I know is that the received wisdom on the subject doesn't sit well with me.

Today that subject would be use of the word disability.

Outside of my work at Holland Bloorview, I find I rarely use the word in conversation with people and in particular with my son Ben, who has many diagnosed disabilities. In fact, I can't remember when I last spoke about disability with Ben. A part of me thinks that I "should" be talking about it on a regular basis with Ben, to help him become a better advocate for himself.

But the truth is that in our everyday life I don't see Ben as disabled. The first quality that comes to mind when describing Ben is not disability. I see him as different, yes. Challenged by unusual and grossly unfair circumstances, yes.

I also see him as he defines himself -- as smart, funny and gentle.

I don't reduce him to what he isn't -- "lacking" in ability or the "opposite" of able, which I think is the most common mainstream use of the word disability.

In the disability community we tell ourselves a story about the word disability. We tell ourselves that it used to be a word used to oppress our loved ones, but that disability activists have claimed ownership of it and freed it from its earlier connotations.

We tell ourselves that when people hear the word disability, they don't conjure up an image of lack or loss.

That may be true within the disability community (though we still tend to view certain types of disability as more okay than others) and in places like Holland Bloorview, which have a disability-positive culture.

But when I read mainstream news or follow generic parenting blogs, I see a narrowing of who is valued and who isn't in this society. I see a rigidly-held concept of what it means to live a "productive" life and what is needed to get there, not a flexible one.

I see a culture that places more value on individuality, conformity and competitiveness than community, diversity and collaboration -- though companies and groups launch convincing PR campaigns to suggest otherwise.

I do not see an opening or shift in how people view the word disability when attributed to a person.

I see a culture that is quick to judge people as "deserving" of their situation in life. If I'm a success by Western standards it's because I worked my butt off. And if I'm not, it's because I was lazy. Most people still operate under the fairy-tale illusion that we start off equal in life.

A couple of years ago I led a workshop on how to write about disability. As I put my slides together, I remember feeling torn. Two of my directives seemed contradictory. On the one hand I told people to use neutral language devoid of value judgment: "Stay away from words that elevate people with disabilities to superhuman (saint) status or suggest they're less than human, tragic (abnormality, defect, victim)" I said.

On the other hand I gave them the seal of approval on use of the word disability. I told them that disability is the preferred descriptive term.

But there isn't anything neutral about the word dis-ability. The word "dis" is described in the Oxford dictionary as "expressing negation" or indicating "reversal of a state."

Who wants their human identity to be summed up as a negation of something?

My other son has attention problems. He hasn't been formally identified as having a learning disability, but he takes medication to improve his focus. Last night when I sat in a therapy session with him the counsellor referred to his "learning disability" while we went through a psychological assessment. I don't think he's ever heard his attention problems classed as a disability before. And I had to wonder how that sat with him.

In his head, was he thinking: "I have a negation of the ability to learn?"

No, he wouldn't know the dictionary meaning of the word "dis," but he'd know intuitively that it was bad. When you diss someone or something, you put them down, right?

And if we were judging the precision with which the term "learning disability" allows you to envision how a specific child's mind works or how they live in the world, would you give it an A?

It's the same when applying the word disability to a physical or developmental disability. It tells you almost nothing about the package of qualities that is that person.

Sometimes it will hit me when I'm doing an interview, how clunky, inadequate and biased the word disability is as a descriptor. I'm so used to letting the word roll off my tongue that I don't hear it the way the average person does -- the way people outside our community do.

And I'll catch myself feeling stupid when I ask someone to comment on something related to "kids with disabilities" -- as if this diverse population of human beings could be lumped into a separate species.

Disability in the common vernacular is about what isn't -- it's the absence of something that our culture has deemed good.

It would be as limiting and non-descript as saying I was non-male or non-hair (I have alopecia) or non-young. It doesn't say anything about who I am.

Recently I wrote to Xavier Le Pichon, the French geophysicist who helped create the field of plate tectonics. Contrary to popular Western conceptions about what makes a person human, Le Pichon believes that fragility and empathy are our defining traits. While developing his scientific theories, Le Pichon lived in the original L'Arche community for people with intellectual disabilities. His children grew up there.

"Our culture views disability as a loss, as taking away an essential part of a person and diminishing their value," I wrote to Le Pichon. "How do you view disability based on your time living in L'Arche?"

"In L'Arche, I do not think of...persons as having disabilities," he said. "They are just friends. I consider some of them as being the closest friends I ever had. When you love somebody, you do not think of him as having disabilities. He is what he is. That's it."

It reminded me of when I visted L'Arche in France in the summer. When I asked questions about people with disabilities there, I was met with a blank look. Just who was I talking about? Was I really that coarse and simplistic in my use of language? At L'Arche they don't use the word disabled. It isn't in their lexicon.

I get that in order to acquire funding for the services our kids need, they must be categorized.

But on a personal level, I don't think the word disability plays a big part in many family's lives. I think families are more focused on what their child "is" -- which is immense and can't be quantified in words -- not what they aren't.

Read More

Are people with disabilities a new economic market?

Rich Donovan (above) was a trader for Merrill Lynch who started Lime Connect, a non-profit that helps companies recruit people with disabilities at the college and professional level.

Donovan is now CEO of Fifth Quadrant Analytics, which provides corporate clients with tools to capitalize on disability as an emerging global market. Here, people with disabilities are seen as consumers, talent and taxpayers.

"In the last U.S. census, 19.6% of the population thought of themselves as having a disability," Donovan writes in Essential Accessibility. "That's not a political or medical designation, but rather how people see themselves, and how their purchasing habits are shaped. If you include close relatives as well, people with an emotional connection to disability climbs to 53% -- over half of the population.

Read more about Lime in this Wall Street Journal piece.

Read More

Identity: Is it what you do?

New Jersey author Amy Julia Becker, mom to Penny, spoke earlier this month to BLOOM readers about Raising kids with disabilities in an age of achievement. Click the link and check her out! Amy wrote A Good and Perfect Gift. We have a few copies of her book available at $15 Canadian. Thank you Amy Julia!

Read More

Does every child matter?

The results of 'Does Every Child Matter, Post-Blair?' were released today. The research project at Manchester Metropolitan University asked what life in England is like for disabled children age four to 16. Researchers spoke to disabled children, their parents/carers and professionals to ask about their lives from 2008-2011.

Here are a few findings I know will resonate with readers. Check out the report in detail (link above) to learn about the researchers' recommendations. Louise

• disabled children sometimes sit outside 'mainstream' children's policy and 'mainstream' services including education, health, leisure and social care
• families with disabled children are often isolated with little support in their communities
• despite changes in legislation, disabled children are still excluded from a range of leisure activities. The biggest barrier to disabled children's access to leisure was the attitudes of other people. Physical and attitudinal barriers mean that many disabled children had no choice but to attend segregated leisure activities.
• disabled children living with life-limiting conditions and their families are likely to experience isolation and poverty. Parents and carers are often excluded from support networks. The discrimination families face in life continues in death.
• parents come under huge pressure to make their disabled children 'normal.' When families differ from the 'norm' this leads to exclusion -- children are excluded from friends, schools and leisure opportunities and parents are excluded from friendships and work
• disabled children have often been excluded from arts for its own sake (their creativity is often thought about in terms of therapy)
• parents are often asked to talk negatively about their disabled children in order to access services and support, whether in education, health, leisure or social care/benefits. Parents are asked repeatedly to talk about what their children can't do, as opposed to the support they require. Parents say this has a negative impact on their relationship with their child.
• disabled children often have to deal with negative perceptions of their bodies, including being stared at or questioned about their bodies. Disabled children's bodies often cause emotional reactions in others because they serve as a reminder that none of our bodies are normal
• when disabled children are viewed as 'vulnerable,' bullying is often accepted as inevitable. Often the bullying goes unnoticed by the adults who are sometimes also the perpetrators.

Read More