'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

Refugee claimant hits roadblocks getting disabled child's care

By Louise Kinross

I'm delighted to introduce the latest in our A Family Like Mine video series.

Meet Ola Atanda and her three kids: Bolu, 15, Abby, 7, and Rahmat Beverly, 19 months, who has cerebral palsy. The family, originally from Nigeria, has been living in a Toronto shelter for almost two years as Ola seeks refugee status. Ola is attending high school with hopes of going on to university to become a social worker.

Ola says her greatest challenge is getting Rahmat’s health needs met. “I’m having great issues with my Ontario Works case worker,” she says. “She never wants to approve any of her medical needs.” For example, she wouldn’t approve Rahmat’s feeding machine. “She’s a sick baby, a disabled child diagnosed with about six things…what do you want to see that could make her…eligible?”

Ola says her two boys get good medical care with their interim health card, which covers refugees without status. “I think the reason why I’m having this problem is because she’s a child with special needs.”

Check out all of our A Family Like Mine videos.

Read More

What works in children's rehab, and why, is researcher's passion

By Louise Kinross

De-Lawrence Lamptey has a PhD in rehabilitation science and a master’s degree in clinical psychology. He has right-sided weakness related to cerebral palsy and grew up in Ghana. “When I was growing up I was less aware of my disabilities than I am now,” he says. “I was born with a disability, but I was never raised as a person with a disability.” De-Lawrence is a postdoctoral fellow doing research in inclusion and participation at Holland Bloorview with senior scientist Gillian King.

BLOOM: How did you get into this field?

De-Lawrence Lamptey: I was born with a disability. I have a form of CP that affects my right arm and leg. But I grew up in Ghana feeling I was just as normal as any typically developing child.

BLOOM: Doesn’t that culture hold negative attitudes about disability?

De-Lawrence Lamptey: Yes. They attach superstitious beliefs to disability, so they believe it’s caused by a sin or a curse. I was teased, but it didn’t affect my goals in life, or the way I perceived myself. My identity was formed in my family, as opposed to the culture around me.

A second barrier I faced was that I’m left-handed, and in Ghana using your left hand with people in your interactions is culturally considered a sign of disrespect. So if I raised my left hand to answer questions in school, some teachers wouldn’t take my answer because they weren’t aware I was disabled.

In the culture, if you want to use your left hand in interactions you're expected to apologize beforehand, in order not to make people feel disrespected. Can you imagine if I had to say ‘I’m sorry I used my left hand’ to everyone I interacted with on a daily basis? I didn’t do that, so many people thought I was being disrespectful, especially those who weren't immediately aware that I had a disability.

I give a lot of credit to my mom. I was allowed to do everything, and I wasn’t overprotected. I wanted to do what I saw everyone else doing, so I learned how to ride a bike and to play the bass guitar, the drums and the piano. I felt whatever I wanted to do was possible and that things shouldn't be easy before they can be possible for me. I had a supportive family who said ‘Go for it.’

My mom told my teachers in school not to treat me any different from the other kids, so my teachers weren't overprotective either. This made my classmates more accepting because when we got into trouble during play we all got the same amount of punishment. And this made me feel no different from the other kids as well.

The only issue was that equal treatment didn't always take into account what I couldn't genuinely do because of my disability, and so it was cruel sometimes. It also meant that I had no accommodations, which was lacking in Ghana anyway. So you either learn to swim or you drown. In a way, this encouraged me to think out of the box to learn how to live without accommodations and still thrive.

BLOOM: What made you want to do research about children with disabilities?

De-Lawrence Lamptey: In Ghana, many adults with disabilities beg on the streets. If I was begging on the streets, I would be classified as a person with a disability. But when I did an internship in clinical psychology and families came to see me at the hospital, they felt I didn’t classify as a person with disabilities. They would say ‘You’re not disabled.’

It meant disability was not how I looked, but what I could do. That shifted my focus. It made me realize it’s what we do with children that would eventually decide whether they will beg on the streets, or not, in adult life. If I put myself in the shoes of those begging on the street, and grew up in their family, maybe I would have ended up in the street. I needed to get into pediatric rehab where I would be able to look at how to promote inclusion and participation of children with disabilities so they could reach their optimal potential.

Eliminating barriers in society is very critical, but sometimes it can be difficult to do in the short term. For example, initiatives to remove attitudinal barriers  have been going on for years and some progress has been made, but we still have a long way to go. Another example that takes time is redesign of existing architectural structures.

So if we can’t remove the barriers in the short-term, is it possible to work with children to help them work around the limitations of their disabilities, and the social barriers they face, to reach their optimal potential?

How can we teach children to be able to say, regardless of the barriers I face, that I should strive to live to my full potential? That’s why I was interested in working with Gillian on some of her resilience projects.

BLOOM: You mentioned you’re writing up a paper here about a study that looked at parents’ expectations of residential life-skills programs. For example, our Independence Program has youth spend three weeks living on a university campus. Why was there a need for this study?

De-Lawrence Lamptey: Even though residential life-skills programs have been going on for a long time, and people have studied various aspects of them, what parents expect their children to achieve, or the program to deliver, is relatively unknown.

How participants do after they go home to their family depends partly on the expectations of the family. I grew up in a family that was less protective. But what if parents have low expectations that their child will acquire certain skills? We want to be able to add valuable knowledge to improve the program, so that parents are better positioned to give their children the best support.

BLOOM: What kind of research do you most enjoy?

De-Lawrence Lamptey: I’ve been privileged to work in the world of describing and evaluating programs. I like to identify best practices in program design and delivery. I enjoy looking at what impact a program actually has on clients and families, for the purpose of using that knowledge to improve.

This research helps you do two things. One, most of the time when we look at the services we’re providing, we don’t know what is working, or even when it’s not working. And if it is working, we don’t know why. Every child is so different that even though most of the services we provide are evidence-informed, they may work for some and not for others. It’s very important that we optimize the service for a large group, so we can share the knowledge around the world about the effects of the program.

Second, this kind of research gives accountability to funders of the program. They need to know what impact the program is having to determine whether to continue funding it or, if it’s not working, what are the ways we can make it better.

BLOOM: What’s most challenging about your research?

De-Lawrence Lamptey: It’s mostly work I do sitting in front of a computer and typing, so sometimes I don’t have that much of a social life. I’m always working at a computer or reading and I’m always thinking. It can be difficult to turn it off. Even when I’m on my bike I’m thinking about the paper I’m writing, and if an idea comes to me in the subway, I have to write it down so I don’t forget. Subconsciously my mind is always working.

BLOOM: I read an article yesterday by a disabled researcher who said that people working in the field often don’t have disabilities, and tend to view themselves as experts, instead of listening more closely to people with disabilities.

De-Lawrence Lamptey: We all have different experiences. I have been fortunate to overcome many barriers to get a PhD as a person with a disability. People with disabilities face multiple barriers that make it difficult for them to acquire the necessary expertise to do the level of research we do. So it’s very important that we work together.

The greater challenge, I believe, is that the research we produce should make a lot of sense to users. But unfortunately, if we write in a language that makes sense to people with disabilities or service providers, it can limit the chances of it being accepted for publication into a scientific journal. Every discipline has their own language that they use. So I’m torn. To rise in my career, I need to publish. But that means writing in a way that people who need to implement the research may have difficulty understanding.

BLOOM: It bothers me that the research world makes itself exclusive by using jargon that the average person can’t understand.

De-Lawrence Lamptey: I think it's really important for us to write in a way that everyone can understand, especially those who use the knowledge.

BLOOM: What kind of work do you want to do in the future?

De-Lawrence Lamptey: The work I want to do ultimately would be to look at how we could mobilize resources to help people with disabilities in under-served communities in Western countries and in developing countries. I feel the world has given me a lot and I need to give back, and giving back means giving back to people who are most in need.

Read More

How vulnerable brains find workarounds is this scientist's passion

Photo and interview by Louise Kinross

Dr. Tomáš Paus is fascinated by brains—not individual brains, but the study of hundreds of thousands of them. As a neuroscientist, he studies how our genes, and our physical and social environments growing up, influence our brains. Why do some children’s brains find workarounds to compensate for early adversity—such as premature birth—while others don’t? And in children with brain-based disabilities like cerebral palsy or autism, is there a way to build resilience that can aid brain function as the child grows?

Tomáš is the new director of Population Neuroscience and Developmental Imaging at the Bloorview Research Institute. His research program will rely on an accessible and child-friendly MRI coming to the hospital in 2019. Tomas did six years of medicine and a PhD in physiology in the Czech Republic, where he grew up, before moving to Montreal for a post-doc fellowship in cognitive neuroscience. We talked about his move into the world of children’s rehab.

BLOOM: First of all, what is developmental neuroimaging?

Tomáš Paus: It’s imaging the brain, from conception onwards, and there are no strict boundaries on what we call development. Some people are talking about development when the brain is in the womb, others say the first three years of life are most important. Others say development is certainly happening in adolescence. In the context of Holland Bloorview, we’re talking about the first two decades of life.

BLOOM: You've come from Baycrest Centre. What research were you doing there?

Tomáš Paus: I worked on adolescence, mostly by studying children from mainstream high schools, some of whom experienced early adversity—for example, whose mothers smoked during pregnancy.

Many people have experienced an early adversity, and their brains overcame it in some way. Is it because they had ‘good’ genes or a good supporting environment at home, or a socially supportive environment in their community?

What is it that will maintain someone in a healthy trajectory of brain development despite experiencing adversity? If we can learn what this resilience is, perhaps we can supplement it to people who don’t have it naturally.

BLOOM: Which population will you work with here?

Tomáš Paus: We don’t know yet. We’re not going to focus on a specific diagnosis or disability, but a type of adversity that may result in many different outcomes. For example, very preterm birth—if you’re born at least two months before term—puts you in a more vulnerable position.

We know that some children handle it well, while some children develop immediate disabilities such as cerebral palsy, and some may have a higher likelihood of developing autism. Some children may be fine all the way into their teens, and then be at higher risk of developing depression, bipolar disorder or psychosis. Other children may be fine on those lines, but have learning disabilities.

One idea is to develop a large cohort of 10,000 kids, between the ages of five and 14, that we would follow for 10 years. A group of them would have been born very pre-term, another group less pre-term, and another group at term.

BLOOM: Has this been done before?

Tomáš Paus: I’m not aware of any large, population-based study of children who were exposed to early adversity and may have a variety of outcomes that range from healthy brain development to having autism or cerebral palsy.

BLOOM: Why is there a need for such a study? 

Tomáš Paus: Some kids—no matter what you do at the time of an event like hypoxia of the brain—will have damage. Now we need to work out what we can do, at any time of their life, to help the brain achieve its potential. When the brain has to find a detour, some brains find the detour more easily than others. What does it depend on?

Does it depend only on the biology of the brain and the genes of the individual? Probably not. Does it depend on the family and what they’re doing and how they’re doing it? Most likely. Does it depend on the peers that the kid is encountering through childhood and adolescence, or not encountering, if there is social isolation? Most likely.

But we don’t know how it works, and I want to know how it works, because then we may be able to use this knowledge and provide a supplement. Perhaps it’s an app for parents, or a school policy that will improve integration, or a particular type of support at a particular time in the child’s life. It may be a technology that helps kids with disabilities to function better.

BLOOM: Isn’t there a danger in implying that resilience is largely up to the individual, or family? I’m thinking of some doctors who pushed back against the idea that burnout could be solved solely through building their resilience, rather than changing the system. 

Tomáš Paus: Very good point. That’s why we need to emphasize that the sources of resilience are at multiple levels. Some of them may be at the level of the individual. Others may be at the level of the household, and others are at the level of the community and education system. And even at the level of the individual or the family, you don’t want to have solutions that require their effort.

I know I’m lazy when it comes to exercise. So the only way I can build it into my schedule is if I do it automatically. So every day I walk from Lawrence subway station here and back, and that gives me my 12,000 steps a day. So the solutions for resilience have to be really smart, and nudge or guide you in a way. It can’t be that something beeps at you and says ‘Please do this.’

There's a book called Nudge that talks about how we can help people make better health choices by nudging them in the right direction. For example, in a subway, when you have a set of stairs and an escalator, how do you nudge people to take the stairs? You paint piano keys on those stairs and, somehow, subconsciously, people find it interesting to be walking up piano keys and it works.

BLOOM: You’re not suggesting that through resilience we would somehow remove a disability are you?

Tomáš Paus: No, we will not be able to remove the disability, absolutely not. But we may be able to find workarounds for living with disability. For example, take the work Tom Chau is doing here with external devices that help kids with disabilities to function better. We may be able to learn how those devices interact with the brain, and affect the brain, over months and years. We may be able to suggest how to tinker with a device to increase its usefulness.

BLOOM: Many people look at something like autism or intellectual disability now as a difference that has value, not just as a deficit. Will your work just measure kids’ brain function in conventional ways?

Tomáš Paus: There are current population studies with strong imaging components that are focused on the general population. They’re focusing on normal kids. We’re moving in the opposite direction.

We're opening the range of variability, and the range of possible outcomes, and there will be no judgment. I was just interviewed on CTV News and the reporter asked: ‘Will you be studying atypical brains?’ I said I don’t know what is atypical or typical. I don’t want to make any judgment about what’s normal or not normal. It’s the diversity that will tell me how it all works.

BLOOM: What’s the greatest challenge of this work?

Tomáš Paus: The first is we need people to get excited about it, because it requires a commitment of 10 years. This would not be a study where you show up once.

We would bring the kids back every two years to do scans and answer questionnaires. We’re thinking about innovative ways to collect information on the behaviour of the kids and families by having them wear technology. So perhaps, with their permission, they would wear a smartphone that would collect information.

BLOOM: Why were you so interested in the brain in the first place?

Tomáš Paus: Who wouldn’t be? It came to me through psychology and psychiatry. I was interested in people’s behaviour. As a teen I read a lot of novels about people’s behaviour. I grew up in a small town not far from where Sigmund Freud was born and lived for a few years. But I think it was the human behaviour through novels that really got me going.

There was a large psychiatric hospital next door to where I grew up, and I would pass it every day. My teacher of biology in high school saw my interest, and encouraged me to go and talk to a new senior physician at that hospital. The physician said he’d just read about how Vitamin C can be good for attention, and asked me if I’d like to do a study on it. My father worked for a pharmaceutical company and helped me to set up the placebo pills. And my mother helped me with typing things up.

BLOOM: You mentioned that your wife, Zdenka Pausova, is also a researcher.

Tomáš Paus: Yes, she works at SickKids. Her primary interest is in cardio metabolic health. She’s an expert in genetics, but now she’s looking at the relationships between cardio metabolic health and obesity and brain health in teenagers and adults. She has a big National Institutes of Health grant to look at the relationship between inflammation induced by obesity and how it can potentially induce inflammation of the brain.

BLOOM: What are your first impressions of Holland Bloorview?

Tomáš Paus: It’s a very cheerful environment, and I keep running into people in the hallways and talking about things that interest me and interest them, so it’s very interactive. There are little barriers between the hospital and the research institute, which is impressive. It’s amazing how strong that integration is.

Did you like this interview? Sign up to receive our monthly BLOOM e-letter in your inbox. It includes our latest stories on families raising children with disabilities and the work of clinicians and researchers at Holland Bloorview and beyond. Plus links to mainstream disability news, new books, and shout-outs to people and groups making the world more accessible.

Read More

After deep brain stimulation, 'I can't be happier'

By Louise Kinross

We recently heard from former Bloorview School student Osmond Shen, who wanted to share his experience with deep brain stimulation to treat involuntary movements caused by cerebral palsy. "It's made a huge difference in my body," says Osmond, 20, who enjoys playing Nintendo switch games with his brother Edmond, studying with a tutor, and online shopping. Deep brain stimulation is a surgery where thin wires called electrodes are placed into one or both sides of the brain in areas that control movement. The electrodes are connected by extension wires to a battery-operated device, similar to a pacemaker, placed under the skin below the collarbone. A few weeks after surgery, this device is programmed to interrupt the atypical signalling patterns causing movement problems.

BLOOM: What problem were you hoping deep brain stimulation would treat?

Osmond Shen: To decrease my dystonia, or uncontrolled body movements. Before my surgery, my legs were painfully stuck together all the time. Also, my neck was becoming so stiff and stuck to one side, that it was difficult to turn my head back and around. I experienced lots of pain when my muscles were stiff, and, when you go through constant pain during the night, you [don't] have enough sleep.

BLOOM: Had you tried other treatments?

Osmond Shen: Yes. I had been on an intrathecal baclofen pump since 2005. But even though for the last couple of years I've been on a high dose of this medication, my body was still stiff.

BLOOM: Who suggested deep brain stimulation to you?

Osmond Shen: My baclofen pump doctor at Toronto Rehab referred me to a movement disorder clinic at Toronto Western Hospital.

BLOOM: I thought this surgery was always done while the patient was awake, but that wasn't the case for you, right?

Osmond Shen: No. I wasn't awake during my six-hour procedure, because of my uncontrolled movements.

BLOOM: Was the recovery painful?

Osmond Shen: It wasn't painful, but it was very uncomfortable. I had staples on three parts of my body because, in addition to deep brain stimulation, I had my baclofen pump replaced. The staples were itchy and made me so uncomfortable.

BLOOM: What difference did deep brain stimulation make, in terms of how you feel, or what you can do?

Osmond Shen: First of all, I can turn around my neck easily. Also, I have much less pain in my legs. It's made a big difference since it was turned on. My body has been much more relaxed and flexible. Life is much easier for me now.

BLOOM: Many people would be anxious about having this surgery. Did you do anything in advance to try to help you relax?

Osmond Shen: My parents, my physiotherapist, my neurosurgeon and my family friend were all so positive, and on the same page, and kept encouraging me to go for this procedure. My part was doing research about this technology on the Internet.

BLOOM: Is there anything you aren't happy about with the results?

Osmond Shen: I can't be happier than I am today. The results are what I expected, and my doctor said it usually takes about one year to reach its full result, so I still expect more improvements.

Read More

New takes on disability and adaptation

By Louise Kinross

There are so many wonderful media stories on new ways of thinking about disability and adaptation at the moment.

Let's start with this interview with A. Laura Brody in VoyageLA. Laura is a costume maker and designer who "[re-imagines] wheelchairs, walkers, and mobility scooters as works of art," she says. "My interest in mobility devices came from dealing with a former boyfriend's stroke. I was fascinated by wheelchairs, walkers, and any other devices that help people move and adapt. However, I couldn't understand why their designs were so cold, clinical and hideous. They were almost insultingly ugly." I pulled the photos above of a wheelchair Laura turned into an Edwardian throne from her website Opulent Mobility.

This afternoon I heard another wonderful CBC Tapestry episode hosted by Canadian singer songwriter Christa Couture. BLOOM interviewed Christa in the spring, after a maternity photo shoot she did with her prosthetic leg went viral. Christa had her leg amputated as a young teen to treat cancer.

Last month Christa did a series of Tapestry interviews on Rethinking Disability. They include a talk with Eli Clare, author of Brilliant Imperfection: Grappling with Cure, who is an American poet and activist with cerebral palsy. "On an individual level, my cerebral palsy is defined as 'trouble,' both medically and culturally," he says. "And yet, I don't have any idea who I'd be without tremoring hands, slurring speech, tight muscles and a rattling walk. So the idea that my cerebral palsy could be cured, in other words taken away as if it never existed, would totally and completely change who I am." This interview blew my mind.

Christa also interviewed Halifax sex educator Kaleigh Trace on how she came to love her body, including a disability she acquired in a car accident as a child. And Christa talked with Toronto's StopGap founder Luke Anderson on the merits of identity first vs. person first disability language. 

The Tapestry episode this afternoon included a candid interview with Amy Silverman, author of My Heart Can't Believe It. Amy is an American journalist who learned she wasn't as accepting of diversity as she thought when her daughter Sophie was born with Down syndrome. "We all have something that rocks our world ... that is a challenge that we think we could absolutely never meet," she says.

Finally, this Tapestry interview with Simon Paradis, a musician who suffered a severe brain injury in an accident, and his wife Kara Stanley, explores how the Canadian couple try to embrace a new normal. "There are moments when I'm playing at a gig, and I look at my left hand and think I'm going to play this Jimmy Page rift that I really like, and all of a sudden my fingers do something completely differently from what I'm actually trying to think of...' Simon says.

I think Christa Couture deserves her own CBC program to explore disability and adaptation.

Here are some other films and articles worth a watch or read.

Between sound and silence, The New York Times
This is a fabulous short film where adults who are deaf describe what it's like to live with cochlear implants.

Children are being euthanized in Belgium, The Washington Post
An opinion piece about three children given lethal injections in Belgium. They included an 11-year-old with cystic fibrosis and a 17-year-old with Duchenne muscular dystrophy.

Matt, Healthy Debate
A fascinating interview with Matt, a young man who becomes a personal support worker for another young man who has quadriplegia and uses a ventilator after breaking his neck in an accident. I'm not sure why Matt's last name isn't identified?

Rich Donovan was the only trader with a physical disability, The Muse
Rich has a new book coming out called Unleash Different: Achieving Business Success Through Disability. Here, he talks about working on Wall Street as a portfolio manager and how he created some workarounds, because his voice can be difficult to understand.

Boy with mystery condition is worshipped as a god, Born Different
A six-year-old Indian boy with disabilities is worshipped by locals who believe he is the reincarnation of the Hindu god Ganesha.  

Read More

A girl who wanted to disappear becomes 'The Pretty One'

By Louise Kinross

Keah Brown is an American writer working on a book called The Pretty One, which is a collection of essays about living as a disabled woman of colour in a white, abled world. Keah studied journalism at the State University of New York at Fredonia and lives in Lockport, N.Y. She’s a senior entertainment writer at ClicheMag.com, and her essays have been published in The Rumpus, Harper’s, Teen Vogue and Lenny Letter. I first heard about Keah a year ago when she launched a photo campaign with the hashtag #disabledandcute on Twitter and it went viral. I wanted to talk to her about the impact of racism and ableism when she was growing up.

BLOOM: How did your experiences as a black, disabled woman figure into your desire to write?

Keah Brown: Writing is something I’ve always done. Even in secret, when I was growing up, I had little notebooks that I’d write songs in. And the songs would become poems, and the poems became stories, and it was a natural progression.

When you grow up not seeing yourself represented in any form of media outside exploitative telethons, you get the urge to say ‘Hey, that’s not how any of this works.’ I’m here to tell my story because I don’t want to be forgotten, or be assumed to be a certain way when I’m not.

The Pretty One is about our need to change the culture and the ideas that shape the way we see disability, because they’re harmful. The Pretty One is about joy, and about finding a way to the other side of what is self-hate or poor self-esteem.

The narratives we usually see are about people with disabilities who hate their bodies. We often see that in movies, where a disabled character wants to die. I wanted to showcase how someone who feels those things comes out of it—and the work that takes—and the process of getting to be a person who is very much joyful and happy and full, in a way she never was before.

Obviously there’s going to be a bit of heartbreak and loss and grief. But ultimately The Pretty One is about joy.

BLOOM: So the book is written as a series of essays?

Keah Brown: It’s a collection of 13 personal essays, at this point. I'm not sure if that will change. We’re shooting for a release date of spring 2019.

BLOOM: You’ve written about having cerebral palsy. How does it affect you?

Keah Brown: I have hemiplegia, so it affects my right side. I’m able to walk, but I need to take breaks, and I get aching limbs and arms and hips. But at this point, I don’t use a mobility aid.

BLOOM: Last year you wrote a beautiful piece on Roxane Gay’s book Hunger in The Rumpus. It begins like this: ‘There’s a moment in every day where I think of my younger self—the fifteen-year-old me, the sixteen-year-old me, and the twenty-year-old me who prayed morning, noon, and night to be rid of my body. When I was younger, my scars, bruises, bent fingers, limping leg, and crooked lips disgusted me.’ In the essay, you write about your desire for invisibility when kids would ask you what was wrong with your body.

Keah Brown: Because I wasn’t surrounded by many other disabled people, let alone kids, I saw my disability as this thing to run away from, or to try to pretend that it wasn’t there. I had a very happy childhood from kindergarten to Grade 5, and Grade 6 was when I realized I had a disability.

With my other siblings—I have a twin sister and a brother—they’re able-bodied and my mom never treated me any different. Whatever they got I got, and we never talked about my disability in terms of it being this difference and that difference was bad.

Then when I got to middle school and kids made fun of me in the cafeteria, it kind of stuck with me. If someone made fun of this thing that was different, then it must be bad. So I spent a lot of time wishing to be invisible and wishing that I would wake up in another body. I felt I was being punished in the body I had. I wanted to be just like everyone else and to blend in. I was tired of people asking questions and staring at me.

BLOOM: What would you tell other children whose differences make them want to disappear?

Keah Brown: The best advice I can give is that they are who they are, and all that they are is enough. It’s not only enough, but it’s beautiful and worthwhile, and their bodies tell a story. It doesn’t matter if they don’t look like a certain person, or look a certain way. What matters is that they figure out who they are, and celebrate that. That is the person they're stuck with for the rest of their life, so it’s important that they learn to love that person.

BLOOM: You’ve written about how when children don’t fit conventional European white standards of beauty, there’s almost an expectation that they should hate their body.

Keah Brown: Absolutely. There’s this idea that if you’re different you should feel bad about being ‘other’ and breaking the mould. When you do that, people don’t know what to do with you. They assume you don't know what to do with yourself, and you should be uncomfortable, because they’re uncomfortable. To those of us who are different, our differences make us unique. Those unique things make us who we are, and who we are is enough.

BLOOM: You created the Twitter campaign with the #disabledandcute hashtag. What did you hope to achieve with that?

Keah Brown: I didn’t hope to achieve anything. I started it for myself and posted four pictures and the hashtag, just to celebrate myself and other disabled men, women and non-binary people. I wanted to say ‘Hey, I finally feel good in my body and you should too.’ Then I left Twitter and went back to an essay I was writing on a deadline.

When I came back, #disabledandcute was trending. By the end of the week I was interviewed by a bunch of different publications, and I learned that #disabledandcute went viral and spread from Twitter to Facebook to Instagram and Tumblr.

I began it to try to celebrate myself, but it became a thing where all disabled people could celebrate themselves. That’s what I’m grateful for. It will be a year this Monday that I posted it.

BLOOM: As a child, how did you experience racism and ableism.

Keah Brown: I didn’t really know what they were as a child. People would speak to me really slowly and would be condescending, as if they assumed I didn’t understand them.

I was never ashamed of being black and in terms of racism, we were sheltered from most of that in my childhood. There were small comments that people made. But never anything that I really had to internalize or keep to myself, in the way I had to with things people said about my disability. Disability as a 'bad' thing outweighed my blackness.

I was always very proud of being black and confident that being black was something beautiful. I grew up in a household of other black people who loved themselves, so I loved myself too. Our blackness was something we had in common, whereas disability was the thing we didn’t share.

I felt disability separated me from my twin sister. I just wanted to be like her and look more like her. I wanted all of these things I thought she could have that I couldn’t have.

BLOOM: Was disability accepted in your family?

Keah Brown: I did feel accepted. I have a humongous family and they were very much always ‘That’s just Keah. It’s who she is.’ My disability wasn’t like a thing that people were weird about. It was what it was. It wasn’t something we addressed or ignored, or pretended that it wasn’t there. It was seen as an aspect of me, but it wasn’t all that I was.

BLOOM: Did you ever feel your disability was marginalized in the black community?

Keah Brown: Not really. The majority of the comments I received as a child—and even now—come from white people. People of colour tend not to say much to me about my disability, unless they know me. The stares and the mocking and the talking slowly is a thing a lot of white people have done. Most of the rough experiences I’ve had have been from white people.

BLOOM: You’ve written about lack of accessibility. What message does it convey to people with disabilities?

Keah Brown: In my freshman year in high school I had a big surgery, and then I had to come back a year later and have a plate taken out. That’s when I realized how inaccessible the building was. There was a kid named Mason who used a wheelchair and I used a walker, and we had to go to the back of the school just to get into it. The elevators were really slow and it took us longer to get everywhere.

These are all things abled people take for granted—that they can get to and from places without any problem.

Today, it's still a really big issue for me. I can’t get down the stairs safely in a mall. Going up the stairs is fine, but coming down I have to reach my left hand over my right arm to hold the rail.

What was good in my childhood was that there were always people around to help me before I knew I needed help. They helped me figure out ways to trick an inaccessible system. That's how I figured out how to put my left hand over my right one to get down stairs.

Or if I’m standing for a long time, I shift my weight from left to right so that my whole right side isn’t aching by the time I move again.

I spend a lot of time in my house, which is very accessible, and in my room where I write. It’s a single level house with a basement that's easy for me to get down to.

I’m able to figure out how to navigate in my own house. The issue starts when I get to public places and they don’t have the same accommodations.

BLOOM: I read that you went to a largely white high school and college. How did that affect you?

Keah Brown: I think what I know now I couldn’t articulate then. When you don’t see enough people who look like you during the day, you start to retreat into yourself. Even though there’s nothing wrong with my black skin, you keep some things to yourself, because you’re trying to navigate a world that's vastly different from the one you knew before.

In a primarily white institution, I was taught mainly about white writers and journalists. I had to look outside the classroom for writers of colour, and to find heroes of my own who looked like me.

The way I handled those experiences was to lean on other people of colour who could commiserate with me. They understood what it’s like to experience multiple micro-aggressions from other students.

BLOOM: Were these people outside the school?

Keah Brown: No, they were the few other black students. We’d acknowledge each other with a head nod and eat lunch together and go to the movies and hang out.

BLOOM: You said that your book is about the process of getting to a point where you love your body and celebrate it. How did you get to the other side?

Keah Brown: Girl, a lot of tears and definitely counselling, and trying. I tried for the first time. What I’ve found is that sometimes you want something but you don’t really work for it. I had to really confront my own problems with disability, and not just my own disability.

I had to confront my own internalized ableism and views about what disability is and what it can be in order to make myself a better person.

I got tired of living my life like it was the world’s worst punishment. I got tired of getting up and feeling like ‘I hate you, you’re ugly,’ and insulting a body that was doing the best it could to keep me alive.

I thought I was giving myself these insults to prepare myself for when other people said them. But it never made me feel better.

I had to actively try to be kinder to myself. I found something I liked physically and mentally about myself, and worked every single day at it. Self-love and self-worth is an everyday practice. This is not a one-time thing. It’s a constant.

BLOOM: You mentioned counselling was helpful. Was it hard to find a therapist who understood about disability?

Keah Brown: I went to counselling at college because it was free. The first counsellor, while I’m sure she was a lovely person, didn’t work out. She treated me as though my self-hatred was something I should just be over.

That’s an issue that sometimes happens when a person doesn’t have physical disabilities. They don’t feel comfortable around disability, so they want you to be over it, and not talk about it.

The second counsellor I had was brilliant and did a really good job.

Counselling helps. I also had to do a lot of internalized work where I acknowledged that I’d met these disabled people online that I love, and they mean the world to me, and it was time to start looking at myself with that love.

Throughout my time of self-discovery I also read books and found fictional characters to fall in love with and grow with. I found bits and pieces of things they did that I thought I could emulate.

Read More

'Trust your instincts. That's what I tell parents'

By Louise Kinross

Fahima Afroze is a biomedical engineer with three daughters. Myreen, 11, has autism and Zafreen, 8, has cerebral palsy.

When Farzeen, now 4, was hospitalized at six months old, Fahima knew her way around the health system.

“They thought Farzeen had a bone infection, but she kept getting other infections,” Fahima recalls. “She caught hand, foot and mouth disease, and had yeast infections in her tongue. They brushed it off and said ‘she’s a kid,’ but my other kids weren’t that susceptible. I kept asking if we could call someone to look at her immune system, and they looked at me like I was the ‘crazy mom.’ One day a doctor left her medical record in the room by mistake, and I read it. I saw her neutrophils dipping to a dangerous level. Neutrophils are a component of the white blood cells. Without them, you have a suppressed immune system. When I showed the doctor, his eyes widened and he paged hematology and the cancer clinic. They gave us the diagnosis of Neutropenia, which is the body’s inability to make neutrophils. I knew something was wrong with her immune system! I had a maternal instinct about my child, and I was collaborating. But they were renowned specialists thinking ‘she can’t teach us our job.’ Trust your instincts. That's what I tell parents.”

With three daughters and three diagnoses, Fahima juggles over 300 medical appointments each year. “If they had the same thing, I could take them to the same appointments,” she says, but each child sees different specialists. Because she can never be certain about the length of visits, “I often have to drag the other two with us. Your sense of normalcy changes when you have a child with special needs. Our new normal is spending the whole day at hospital, or the whole day getting a leg casted.”

When she's not ferrying her children to doctors and therapists, Fahima is advocating for their inclusion.

One of her greatest frustrations is disability stigma. “It’s how people treat your special-needs child,” she says.

After her daughter Myreen spent a few years in a contained ‘community classroom,’ Fahima fought to have her educated in a regular class. “It’s the mindset at the school board that children who are differently abled don’t flourish in the regular class, and have to be segregated. They are very proud of their community classrooms.

“My whole philosophy is that there are no community classrooms in life. There is no community classroom in the workplace, in a place of worship or at an amusement park. We are expected to thrive in regular society. The school board is giving these students the mindset that they don’t deserve to be with socially ‘normal’ people. How do you impart social skills when you segregate students from society? Their peers are their best mentors.”

In the community class, Fahima says Myreen didn’t learn the regular curriculum. “They teach life skills, and it’s up to the teacher how she wants to teach life skills. My child was taught that the stop sign is an octagon for three years. Here’s a child who’s so bright, she knows all the polygons in the world.

“The community classrooms assume the students aren’t going anywhere. So while other students graduate with a diploma, they will graduate with a certificate. We’re closing doors on them before they’ve even tried life.”

All three girls are now in regular classrooms. “My kids have learned to manage in life,” Fahima says, yet they're socially isolated.

When Myreen joined a regular class, she “did well, getting lots of As and Bs. But she didn’t know how to handle the bullying,” Fahima says. “The other students put her up to do things, and she got in trouble. I proposed a buddy system, where an older student would support and mentor a younger student, and could be vigilant to prevent bullying. But the school didn’t do it. That would be going the extra mile.”

Fahima’s second daughter, Zafreen, is in Grade 3 on the ground floor of the same school. She wears leg and hand braces. Fahima is concerned about next year, when the Grade 4 classes move upstairs. She hopes the school will let Zafreen use the elevator. “Every time I ask for the littlest things, it’s like I asked for a kidney or money out of their own pockets, and the push back is crazy. I’m labeled as ‘that mom.’”

Fahima says it’s draining to advocate constantly. “How much can you preach and teach people along the way? I feel I’m doing this over and over again. Every year, I have to battle with a new set of teachers and reinvent the wheel.”

Because her children fall in a grey area, “they aren’t good enough for inclusion, but they’re too good for services,” she says.

Fahima pays for most of her girls’ therapy privately. “I have a new way of counting money,” she says. “I call it ‘therapy hours.’ If I see a $600 coat, I know that’s more than five hours of therapy, so I’m not buying that coat.”

Outside of school, her children tend to participate in adapted or special programs. “Even with camps, you have to choose the special-needs camps, because they will have the accommodations,” she says. “I can’t believe this is 2017 and I’m fighting for inclusion.”

Fahima recalls meeting a social worker who asked how she was coping with three children with chronic conditions. The social worker noted the increased risk of depression in parents who have only one child with disabilities. “I showed her my schedule of 300 plus appointments a year, and I told her I volunteer at places like Holland Bloorview. ‘I don’t have time to get depressed,’ I said.” Fahima laughs. “I guess I could pencil depression in on Tuesday, from 12 to 2.”

“I would be lying if I said it was easy. The hard work, the blood, the tears are too real. But, once you go past the grieving point, you have to hope for the better. You have to make the best of what’s handed to you.”

Volunteering keeps Fahima motivated and energized, she says. She co-founded the York Parent to Parent Support group, which helps parents advocate for their children at school and in the community. She also sits on Holland Bloorview’s Research Family Engagement Committee. “It’s a way for me to give back and a way for me to connect with people,” she says. “It’s not only my children whose social lives have suffered. When I’m volunteering, I don’t feel alone. I see other people in similar or even worse pain, and it’s a humbling experience. I get a reality check. I also like to share knowledge so that someone can learn from the lessons of my life. I hope that someone else may be able to bypass some of what I’ve experienced. And I feel supported when I hear other people’s stories. It’s not just me.”

Fahima recently spoke at a golf tournament by the Ontario Glass and Metal Association, which was dedicated to Holland Bloorview’s Family Support Fund. After talking about how her family has benefited from the fund, which supports equipment, recreation and respite, a participant offered to match the $3,000 that had already been raised. Most recently, she shared her story with Holland Bloorview research students.

Fahima became a family leader at Holland Bloorview even though her daughters are not clients. “We fall out of the catchment area because we live in Markham,” she says. “I’m allergic to the words ‘catchment area’ and ‘mandate.’ Every rejection letter I get has these words in it. We have nothing that compares to Holland Bloorview or SickKids where we are. Diseases don’t come by catchment area. It’s unbelievable that there would be such a difference in services just 40 miles from Toronto. I intend to speak to the CEO at Holland Bloorview about it, if I can.”

Fahima grew up in Iraq and Kuwait, and her family were refugees during the Gulf War. “When you’re a refugee, you’re not even treated as a human being,” she says. “You’re treated with no respect. You’re at the mercy of other people.” Eventually, the family was able to get a “flight from Jordan back home to Bangladesh.”

Fahima was studying engineering in Utah at the time of the 9/11 terrorist attacks. “I volunteered to speak about what it means to be Muslim, and that terrorism is not a religion,” she says. “No religion preaches to harm humanity. Instead, they preach unity, brotherhood and love for mankind. I wrote a paper called The Gulf War: Facts vs. Fiction and I got an A for it.”

Fahima came to Toronto 11 years ago. She is a Canadian citizen. Her oldest daughter Myreen hopes to be a surgeon and a pianist. She already has perfect pitch, her mom says. Zafreen wants to be a teacher. And Farzeen has her sights set on being a dancer. “We have the same dreams as any parent does,” Fahima says.

Like this story? Sign up to receive our monthly BLOOM e-letter in your inbox.

Read More

Parenting as a grandmother: 'You're so much wiser'

By Louise Kinross

At age 63, Marna-Rose Minett has raised two children.

Now she’s raising a third—her granddaughter Rayne, 7, who has cerebral palsy and lives with Marna-Rose and her husband Wayne.

Preparations are already underway for Halloween.

“Rayne loves dressing up in costumes,” says Marna-Rose, pulling up a picture on her phone of Rayne posing as “super girl.”

“This is a costume I originally made for my daughter,” she says, pointing to Rayne in a spotted leopard suit. “Rayne loves music and dancing. She has her own keyboard and two play guitars. She’s trying to talk me into riding lessons,” Marna-Rose says, looking at a photo of Rayne atop a pony. “She’s bright and sunny and personable. She charms a room. She’s really positive, and also very tenacious, when she wants to do something. She makes friends and she wants to be with people and do things.”

Marna-Rose became Rayne’s primary caregiver when Rayne was 18 months old. Rayne’s mother is very involved in her life, but needed to work on her addiction issues.

“You’re so much wiser,” Marna-Rose says, comparing parenting at this stage in her life to when her own children were young. “Things that would have made my husband and I crazy with our own kids are minor bumps in the road with Rayne. You have that perspective.”

While in some ways their parenting style is more laid back, Marna-Rose says they’ve been very hands-on with Rayne’s physiotherapy. “We realized how incredibly important that was for her over the long term, so we worked really hard on that. Maybe if we were younger we would have let that slack a bit.”

Rayne has stiff muscles, but “walks, runs, dances and skips,” Marna-Rose says. Her speech is delayed, and while her grandparents understand her at home, Rayne uses a communication device at school. She graduated last year from Grade 1 in the Bloorview School and is now in a contained Grade 2 class in a neighbourhood school. “We appreciate her milestones more,” Marna-Rose says. “I don’t know if it’s because she’s our granddaughter, or because of her disability.”

When Rayne was born, disability was not new to Marna-Rose. She had studied kinesiology and worked in group homes, including managing one for adults with cerebral palsy. She was also executive director of a program that offered respite to parents of children with severe disabilities.

“Oh good, I can handle this," Marna-Rose recalls thinking, when the doctor said Rayne had cerebral palsy. “That was my first thought.”

Marna-Rose says the biggest challenge of parenting as a grandparent is physical exhaustion. “I have a bad back, and I was already an older mom once, when I had my own kids. I really notice how I don’t have as much physical energy and strength. You get down on the floor, and it’s hard to get back up. If Rayne needed soothing I was sitting in a chair somewhere, I couldn’t carry her. It’s parenting with an aging body.” 

As a grandparent, Marna-Rose says she hasn't had to deal with any feelings of guilt about Rayne's disability. “I know that can get in the way for some parents.”

Advocacy comes more easily at this stage in her life, she says. “My son is gifted and I was used to advocating for him. Being a grandparent, I think I’m a little more reasoned with my advocacy. I’ve had experience dealing with the school system. I can step back a bit, and I have the words. I need more sleep, but I have better words!”

Marna-Rose and her husband investigated a support group for grandparents raising their grandchildren, but “decided we didn’t need it. Our support group of friends, even though we’re all older, is strong, our family was very supportive, and the Bloorview School was fabulous. Our daughter is still there 100 per cent for Rayne.”

Marna-Rose works full-time as an administrator and she and her husband find yoga a great way to re-energize. “One piece of advice I would give to other grandparents raising a grandchild is ‘Remember, you know how to do this. You can manage.’ Because they do. They’ve already raised their own kids, so they have the life experience to have their grandbaby full-time. Use your friends for support.”

Read More

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.

Read More

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.

Read More