Color & Control:

What I wish I knew about disability

A parent opens up about what they wish they knew when they began their journey taking care of their disabled child. Recently, in planning for the future of Holland Bloorview, parents were asked what they wish they’d known when they began their journey with a child with a disability. Here's my answer.

I wish I’d been given a more complex idea of what disability is, one that views it as generative and creative and part of being human, rather than reductive or “taking something away” from a person.

When my son entered the rehab world, no one told me that the disability experience could be considered a culture, and that people took pride in this community. I didn’t know that people choose to identify as “disabled,” like they choose other social identities. And that disability culture values adaptation, creativity and helping one another (also known as “mutual aid”). The importance of relying on each other would have tamped down the message families got about independence being the ultimate goal.

I wanted to hear that my child had value. I didn’t know how to ask clinicians for that. I frustrated my pediatrician by repeatedly asking if my son would live a “normal” life. Years later I deduced that my question was a roundabout way of asking about his worth. I knew “normal” was valued in our culture, and disability wasn’t. I wanted a clinician to tell me that my child had value, exactly as he was. That his worth didn’t come from efforts to reduce or mask his disabilities. 

When my child was born, I had no real experience with disability. I saw it as something unfortunate that would limit my child and cause other people to judge him. My understanding of children’s rehab at the time was that it would help to minimize my child’s disability. I was a believer in hard work, and I was confident that if I threw myself into the world of rehab exercises and therapy, that I could change the outcome for my child.

“Striving for normality is part of the core business of rehabilitation,” wrote the Bloorview Research Institute authors of this 2019 study in Qualitative Health Research. It looked at what clinicians “cheered” for in an outpatient clinic at Holland Bloorview for children with Duchenne Muscular Dystrophy, a degenerative neuromuscular condition that involves the loss of skills over time. For example, clients were cheered on when a therapist was able to achieve almost normal range of motion in their ankles. “We did not see what happened when Ron’s ankles stop looking ‘normal,’” the authors wrote. “When the body becomes “abnormal,” families are not always prepared for it…Cheer works against this preparation.”

As a newbie parent, no one told me that sometimes, despite best efforts, children don’t make gains in the way their parents initially hope. The drive to change a child often stems from the parent’s own discomfort with being different. What I needed, as a parent, was to focus on how I could better accept myself and my child. Acceptance of, and pride in, being different needs to be a stronger theme in children’s rehab. 

Here are some resources I wish had been dropped in my lap, because they would have forced me to examine my thinking about disability.

We Move Together, a children’s picture book about ableism, accessibility, disability arts and culture. It begins with this powerful quote from disability activists Aurora Levins Morales and Patty Berne at Sins Invalid:

All bodies are unique and essential. All bodies are whole. All bodies have strengths and needs that must be met. We are powerful not despite the complexities of our bodies, but because of them. We move together, with no body left behind. This is disability justice.

I wish every parent received a copy of this book as an introduction to the world of disability. In bright, bold images, it follows a group of children, with and without disabilities, navigating their day in the city. They move in different ways—fast, slow, on feet, in wheelchairs, using scooters, bikes and canes. Along the way they work together to overcome obstacles—whether it’s learning American Sign Language so everyone can communicate or building a small ramp so wheelchairs can get over a step into the ice cream shop. 

In a glossary at the end, the book defines ableism as “a form of discrimination. It wrongly considers only some bodies, minds, and behaviours to be normal, worthy, and valuable.” I’d like to see that definition posted in the halls of all children’s treatment centres. As a reminder to everyone, but particularly parents.

I wish a clinician had asked me to consider why I thought speech was preferable to sign language or gestures or voice technology, or to simply being silent but present. I may not have been able to hear them, because I was so rigid in wanting my child to have the same abilities as his peers. I can remember, so clearly, when we were teaching my toddler sign language, that I was embarrassed to use it in public. I can remember sitting in our local cafe, and refusing to let my hands speak, because I didn’t want to draw attention to myself. I wanted so much to be like everyone else. 

I wish someone had shown me this video of  Gaelynn Lea, a disabled American folk singer and violinist who talks about disability in a celebratory way. “Disability is also adaptability, it’s also resilience, it’s also creativity, it’s also inspiration for the art that we create, it’s also the way we move in the world, the way we relate to people…”

I wish I had heard disabled folk describe their technology. Year Of The Tiger: An Activist’s Life by Alice Wong is a must-read in this regard. The American advocate has a form of muscular dystrophy that made walking exhausting and moved, at age 7, from a walker to a manual chair to an electric chair. “…I took my rightful place on my motorized throne,” she wrote. “It was total liberation: I was in a comfortable position and, most important, in control.” For Alice, a power chair was an extension of her body, “a part of my personal space and sense of self.”

Alice was born in 1974, the Year of the Tiger, to Chinese immigrants living in Indianapolis. In her memoir she draws on the attributes of tigers and domestic cats as a model for living well. Last summer Alice had a medical crisis, was hospitalized in intensive care, and lost the ability to speak and eat. She had surgery on her throat to create an opening that connects a tube from her airway to a ventilator. “For now, every breath from my ventilator is a ferocious feline roar of defiance and joy,” she wrote in this Teen Vogue piece.

Wow. What an empowering image for kids who use ventilators. “Roar!” So much of Alice’s book is about “having a loving relationship with a radical body.” We need more research to identify how people with disabilities do that. 

Which reminded me of a 2011 study of children living at home with ventilators by McGill University bioethicist, nurse and psychologist Franco Carnevale. “Our preconceptions going in were that this was an intrusive, aggressive intervention and we needed to rethink the hardships we were imposing on these families,” he recalled.

Despite challenges, the researchers learned equally of the joy in these families’ lives. “My ‘pap’ makes me happy,” one preschooler said, describing their BiPAP, a mask that delivers pressurized air so that a child can take bigger breaths when their breathing muscles are tired or weak. “I really like my pap. The pap is good because it helps me to breathe.”

Year Of The Tiger chronicles how Alice developed a positive disability identity through friendships and working relationships with other disabled adults. In high school “I didn’t have any role models,” she wrote. “I did not have any adult in my life that also had disabilities, that ever said, like, “Hey, I’ve been where you’ve been. It’s going to get better.” 

I’d like parents to be given lists of disabled activists on social media to follow, and other firsthand accounts of disability. I know when my son was young, I didn’t want contact with disabled adults because I held the erroneous belief that a disability could be “overcome.”

I wish there was a rotating first-person exhibit in children’s acute and rehab hospitals, so that disabled experiences surrounded families. A recent example is the book As I Live and Breathe, a collection of short stories and images about growing up with a disability by youth leaders at Holland Bloorview. Images and excerpts lined one of our hallways. I’d like to hear about a variety of people’s experiences, including those who don’t lead conventional lives. What are some examples of rich lives by adults who don’t do traditional work?

What do you wish you knew earlier in your journey with your child? 

Louise Kinross is BLOOM editor and special projects manager at Holland Bloorview Kids Rehabilitation Hospital.

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