I have a mild tremor. It’s not a major disability. So why did the Toronto Star suggest otherwise?

Show of Hand
Photo by Alicia Churilla

In September 2019, I applied for the Ryerson School of Journalism’s Barbara Turnbull Award, a prize named for one of the Toronto Star’s pioneering reporters and the first person with quadriplegia in the newsroom. To accompany the application, I wrote an essay about the challenges I’ve faced as a person with a disability. Before submitting it, I made sure to indicate that I wanted my application to stay private. I’m self-conscious about my disability and didn’t want to draw any attention to it. I didn’t think I would get the award, but then I did. I didn’t think that receiving the award would attract so much attention toward me—and then that also happened. I especially didn’t think the process would in any way change my view of disability itself, but that happened too.

I’ve had a hand tremor all my life. This tremor, which is relatively small and hard to notice, has still made life complicated for me. When I said I wanted to go to journalism school, for instance, my doctor suggested I pursue a major that involved “less writing.” My tremor would make it difficult for me to keep up, she said. Many people I know are unaware of my tremor. My knowledge of disability doesn’t end there: I was raised by someone who didn’t have the choice to disclose or not. My mother died of complications from multiple sclerosis when I was 16.

While my mother’s disease made me recognize how minor my disability is, it also made me feel even more ashamed of it. I saw how people looked at and treated my mom—I saw their fear, their discomfort and, sometimes, their disgust. Some of those feelings I have about myself, too. I’ve struggled with having a tremor. Similarly, I’ve fought against publicly admitting that I have anxiety and depression. I don’t want to have these things, and I would never, until now, tell anyone I have them. My reluctance belies everything I tell my family, my friends, and my coworkers. I’m that person. You know, the one who says not to be ashamed of the very things that I, myself, am deeply ashamed of.

I rarely publicly identify as disabled, especially to people who have disabilities. I’ve never felt “disabled enough,” particularly because my privilege has shielded me from experiencing many of the struggles other people with disabilities face. Still, as with many facets of my life, I wander in the grey area between disabled and not. It’s a lonely and confusing place. In my private life, I’m okay with these things. But in the public eye, I can’t say I feel the same way. That is, until I won the Barbara Turnbull Award.

I felt such heightened anxiety in the days before the awards ceremony in early November. What would people think when they saw me accepting a $1,159 award intended for a student with a “real” physical disability? At the event, not long after the ceremony began, a Star reporter approached, asking to speak with me. My heart sped up, but I hesitantly said yes. He led me into a hallway. A photographer followed us.

I wish I could remember with more clarity what happened next. The hallway was busy and crowded, and I was already concerned about whether or not I was “disabled enough” to warrant the award. After all, Turnbull, as I learned during the ceremony, typed her stories using a mouth stick.

What I do remember is repeating small details that felt significant to me. I insisted on how minor I felt my disability was and how I felt undeserving of the award, especially after learning more about Turnbull, who died in 2015. At some point, to reiterate how small my disability felt, I brought up my mom. When the reporter circled back and asked about that detail, my chest tightened. I immediately thought of my family and what they would think about me sharing a story that I felt wasn’t entirely mine to tell. I remember thinking that I had to change the subject immediately and end the interview, but the reporter was persistent and I was ready to say just about anything to get out of there.

The article came out just a few hours later. It described how I “overcame” adversity and mischaracterized my hand tremor, which I can mostly control with medication, as something that “causes parts of my body to shake uncontrollably.” It also mentioned my mother’s death, as if, just as I’d feared, my tremor on its own wasn’t enough for me to warrant the award. I can only vaguely remember the days and weeks that followed. I could barely sleep as the article circulated among my classmates, my workplace, and the Internet.

I had to keep thinking about disability, though: a month prior, I had agreed to write a piece for the Ryerson Review of Journalism about the landscape of disability reporting. I was more nervous than excited, even then. I knew I would likely have to disclose some personal experiences for the reader to understand why I could tell this story. But more than anything, I was scared to cover disability. Sure, I have some lived experience with it. As my experience as a story subject showed, though, reporting on disability is different; it requires working with the disabled person being interviewed to ensure the journalist is representing the individual in a way that doesn’t fall into easy tropes.

In the last decade, disability reporting has improved in many ways. But it still falls far short, particularly in the mainstream media. Advocates say that stories about people with disabilities rely on two tropes: charity case or superhero. The charity case describes people who “suffer” as a result of disability. They are discussed as though their lives are without dignity and, sometimes, as in a 2019 ESPN profile of a golfer with Down syndrome, Amy Bockerstette, also referred to as “Amazing Amy,” are not even interviewed for stories about them. The superhero presents a person with a disability as extraordinary, as they “overcome” disability and offer the reader or viewer an inspiring story.

“We very rarely see a middle ground when it comes to the portrayal of disability,” says Ing Wong-Ward in a 2016 interview. The disability advocate and former CBC journalist, who died in July 2019, said that when journalists further perpetuate those tropes, it suggests there are only two stories to be told about disability.

Another disability cliché involves focusing on frustration. Take the coverage related to neurodiversity or autism. Most stories are built on parents’ and teachers’ perspectives and frustration about the lack of funding and support for children but frequently fail to include the perspectives of people with disabilities or disability advocates with lived experience.

Aaron Broverman, a freelance journalist with cerebral palsy, says journalists must resist the temptation to fall back on these narratives. Sometimes, he says, instead of dwelling on the hardships associated with disability or looking at people with disabilities as inspirational figures, “It should be more like, ‘oh, by the way, this person also has a disability.’”

The work of disability scholars, activists, politicians, and people with disabilities in all areas of life has led to significant changes in disability rights. So why are so many journalists still telling the same stories about people with disabilities? While doing research for this story, I revisited the essay I wrote when I first applied for the Barbara Turnbull Award. In 500 words, I discussed some of the experiences I had while growing up with a tremor, like avoiding social situations—especially ones that might involve eating or drinking, which is when my tremor becomes most evident. Even so, I never thought of myself as disabled. How could I? My mother was “wheelchair-bound,” I wrote, “incapable of even feeding [herself] or going to the bathroom on [her] own.”

When I reread this, I stopped at the words, “wheelchair-bound.” I know now how inaccurate it is to write that a person is bound to a wheelchair. As Broverman explains, it’s factually incorrect to suggest that a person is ever confined to a wheelchair for 24 hours a day. “Everybody goes to bed; everybody leaves the chair at some point in their day,” he says. “I much prefer ‘wheelchair-user’ or ‘uses a wheelchair’ because that’s more factual than ‘confined to a wheelchair.’”

There are many examples like this, and if you’ve never been close to a person with a disability, you probably wouldn’t know about any of them. Even as a journalist who has lived experience with disability, I still reached for a tired and inaccurate phrase like “wheelchair-bound.” There’s not enough education about these things, says Broverman, and when journalists rely on these stereotypes it downplays the actual issues. Given all this, I understand why the Star reporter fell into an overused, harmful trope. Who can say if I wouldn’t have written a similar story?

[The story] also mentioned my mother’s death, as if, just as I’d feared, my tremor on its own wasn’t enough for me to warrant the award

As with other marginalized groups, having more disabled journalists could help make disability coverage better. But there just aren’t many self-identified disabled journalists—perhaps because, even in 2020, disabled journalists are met with institutions that don’t have enough knowledge and awareness of disability. Sheyfali Saujani, a retired CBC journalist who’s partially-blind, worked in journalism for over 30 years. For much of her career, she says she didn’t claim her identity as a disabled person.

In the fall of 1982, Saujani’s parents accompanied her from Waterloo to Ottawa, where she would be attending journalism school at Carleton University. When Saujani’s mother met with the director of the program she explained that her daughter was partially blind and asked the director what he could do for her. “He basically looked at her and said, well, what do you expect me to do?” says Saujani. At the time, accommodations weren’t provided in post-secondary schools. “He was just a representation of the time, when people with disabilities were still being institutionalized. They were segregated; they weren’t integrated,” says Saujani.

J-school was tough for Saujani, but she felt supported by the program and was determined and excited to be on her own for the first time. At the time, she had enough vision that she was able to read without many assistive devices. But when she graduated, Saujani says, she got her first journalism job at CBC by “semi-passing.” She did, however, tell CBC that she couldn’t drive because she was legally blind. She recalls never asking for help and carrying her own “accommodations” around with her—a pair of Coke-bottle-like glasses that allowed her to read with her nose right next to the page, plus a hand-held monocular to see into the distance. “I didn’t ask the system to make any changes; I didn’t ask for any technological things; I didn’t ask for special assignments; I just went in and did what I was assigned to do as best as I could, working to accommodate myself to the way the system operated.”

But from the late nineties to early 2000s, Saujani struggled to keep up and her health deteriorated, in part from working 10-12 hour days. “At the time, I hadn’t thought to ask for [accommodations] and I’m not actually sure if I would’ve been hired if I had asked for them,” says Saujani. “It wasn’t normal to ask for accommodations. It wasn’t standard practice for companies to be required to think about providing accommodation.” As a result, she took a year-long break from journalism. When she returned from stress leave, she “came out as disabled” and was provided with more of the accommodations she needed. Not everyone at CBC overlooked Saujani’s disability, though. She recalls that early in her time at CBC, a manager provided Saujani with a larger monitor of her own accord. But shortly after she returned to CBC, as she was spending half of her time at current affairs and the other half archiving, one of Saujani’s managers asked her to archive visual content. “[It] was ridiculous because I’m partially blind,” says Saujani.

Education could be the answer to better disability coverage. But on its own, putting educational resources on disability in front of journalism students and journalists isn’t enough. As journalists, acknowledging our own biases and recognizing the need for consistent, in-depth coverage of disability is part of the answer, too. Sometimes that means writing a heavy and complicated story about bureaucratic policy. Topics like the Ontario Disability Support Program and the Canadian Pension Plan aren’t “the stuff of easy headlines,” says Saujani, but navigating these systems is the reality for people with disabilities.

Anne Zbitnew, a Humber College professor and the project lead on a unique course about accessible design for digital media, says she started thinking a lot about accessibility while teaching students from Community Integration through Co-operative Education, a program for adults with developmental disabilities. She didn’t consider running a course, however, until October 2015, partially because she couldn’t find someone to caption videos for a student with a hearing restriction. Zbitnew thought if students and faculty could caption the videos they made, it would alleviate this problem. By August 2016, she’d received a $130,900 grant from the Broadcasting Accessibility Fund (BAF) and, with the collaboration of Humber and the help of her advisory committee, was able to create a course called Making Accessible Media. The accessible online course intends to educate post-secondary schools and media professionals on inclusive design and accessibility in media, but is also available to anyone who wants to consider accessibility in media.

The course also takes students on a brief journey of the basics of disability and accessibility in the media. Among other topics, it tackles representation of people with disabilities, misconceptions of disability, and language. Last year, Humber received a $131,481 grant from the BAF to expand the course. The expansion will include the creation of three accessible films—they are captioned, have audio descriptions, include transcripts, have American Sign Language, and will speak to representation of disability in relaxed performance, meaning that it will be a calmer sensory experience. The films will also be led by filmmakers with disabilities, including Saujani.

CBC, Saujani’s former employer, is currently working on turning Making Accessible Media into an online course specifically for CBC journalists and employees. Jason Boychuk, the co-chair of CBC’s “abilicrew”—an employee resource group for disabled employees and allies that was first introduced in 2016—says the course was eye-opening. Enough so that it prompted CBC into making changes to its style guide.

A lot of these kinds of resources have been spearheaded by people with disabilities. Marichka Melnyk, a friend and former CBC colleague of Wong-Ward, says Wong-Ward was outspoken about accessibility and disability during her time as a journalist at CBC—both inside and outside of the newsroom. “She didn’t allow anybody to be politically incorrect about disability,” says Melnyk. In 2016, after 23 years at CBC, Wong-Ward left to become the associate director at the Centre for Independent Living in Toronto (CILT). During her time at CILT, Wong-Ward became even more candid in her advocacy, especially on her public Facebook and Twitter accounts where she frequently discussed articles about disability—the good and the bad.

In June 2019, Wong-Ward took to Twitter to share an article that was written by Kim Sauder, a journalist who is autistic, about fake autism treatments and the lengths parents will go to “cure” their kids. “Why can’t society accept that disabled people are part of humanity? We have always been here. We will always be here, despite this idea that science will one day ‘fix’ everything,” wrote Wong-Ward. “It is not disability that needs to be ‘cured.’ It’s the attitudes toward disability that do.”

Accessible Media Inc. (AMI), a media company built to provide inclusive programming, is working hard to change attitudes—and representation in journalism. At AMI accessibility takes precedence in its office space, content, and workflow. David Errington, the president and CEO of AMI, says when someone is hired part of the company’s onboarding process is to educate and inform the new employee about various disabilities. AMI also commits to ongoing disability training for their staff. “We are creating our own journalists,” says Errington. “Eventually I see [AMI’s journalists] playing a role elsewhere. They may get hired at CTV or CBC, and I think that would be great.”

Even at an organization centred around providing content for people with disabilities, it’s still difficult for them to find persons with disabilities who have broadcasting experience to hire. Errington says that the organization is working to change that through AMI’s internship and mentorship programs, both of which require their applicants to identify as a person with a disability. “It’s a matter of making people aware of [the positions at AMI], and making those skills and opportunities available,” says Errington. “We’re leading the way in that.”

In the Canadian broadcasting system, AMI has been producing disability content since 1989, when it was established as the National Broadcast Reading Service (NBRS). Today, it’s still leading disability coverage in Canada and the world. Part of this is because of AMI’s status as a “must carry” service, meaning that all digital cable and satellite providers in Canada are mandated to carry the service. While the service is also available online through ami.ca, Errington says that it’s because of their “must carry” status that AMI exists and is like no other channel in the world.

Kelly MacDonald, an AMI employee of nearly 20 years, says that he’s noticed a change in the way that people treat him as a blind person since AMI’s become more well-known in Toronto. Before, he says people were surprised just to see him out doing stuff, but now, they ask him the same questions they would ask any other TV personality. “Those questions have changed, which means to me that people watching AMI-tv, whether they’re watching Murdoch Mysteries and see promos for programs on AMI, they’re used to seeing blind faces,” says MacDonald.

As for the future of AMI, Errington hopes to see the organization become a content company that is fully focused on and made by persons with disabilities. Currently, this is true for about 60 percent of AMI’s content, but Errington says the organization’s goal is to become a channel that is fully dedicated to persons with disabilities and that creates content that “empowers, informs, and entertains” the disability community, especially those who are partially-sighted or blind.

In order for journalists to move beyond tropes and not fall into overused rhetoric of “overcoming” one’s disability, better education is needed in journalism schools and media organizations. Eliza Chandler, an associate professor at the School of Disability Studies at Ryerson University, says that when journalists move beyond those narratives, they can create new journalistic standards that change the whole industry. This is a big responsibility, but it’s critical for the advancement of disability rights and social justice. “When journalists take [reporting on disability] seriously it puts them in a position of making significant social impact and social transformation,” says Chandler.

Broverman believes that training programs, such as the Making Accessible Media course, can serve as a lens into how stories about people with disabilities, and the diversity of their experiences, are going to be portrayed in the media going forward. For many journalists, a part of this training will be addressing their own biases about disability. “What exists to help journalists overcome their biases?” Broverman asks. “I get why you would think the disability story is a really amazing story and kind of miraculous and stuff.”

When I think back to my own biases—the ones I had before this story and the ones I’m still working on—I can’t help but feel empathy for the general assignment reporter who was assigned to write a story about the Barbara Turnbull Award winner. Unfortunately, not much of who I am made it into that story, however, a number of facts and false equivalencies about my life did. But, as I said earlier, before it happened to me, I could’ve written that same story.

It is not disability that needs to be ‘cured.’ It’s the attitudes toward disability that do Ing Wong-Ward

After speaking with disabled journalists, scholars, and activists, I was starting to feel hopeful about the state of disability coverage. Then I talked to the Star and once again experienced firsthand what it’s like to try and raise disability reporting as an issue.

First, I approached Jason Miller, the reporter who had interviewed me. In an email to me, he said that he “admired” that I wanted to “shed light on best practises for reporting on people with disabilities” and then referred me to his editor, Julie Carl, with whom I later spoke about my concerns. She also didn’t comment but referred me further up the ladder to Kathy English, the Star’s public editor.

English confirmed that there has been no newsroom-wide training on covering disability at the Star in the 13 years she’s been there. Disability was more on the radar in the 90s, it’s true: the Star had a dedicated disability columnist, Helen Henderson, as well as Turnbull, who worked there as a reporter.

It would be fair to say here that the Star has lost many columnists since the end of the golden age of newspaper reporting: it also no longer has a social justice issues columnist, for instance. Even though part of Laurie Monsebraaten’s position as the Star’s social justice reporter is to report on disability rights, it falls alongside a number of her other focuses and doesn’t arise as a story topic as often as it once did. “I think it’s fair to say [disability reporting] has not emerged as a priority—for this newsroom or others,” says English.

When we get to discussing the article about me, English asks me to consider the reporter’s position. He most likely would have been assigned the story just before interviewing me, she says. Maybe the reporter didn’t know what questions to ask. My interview with him was brief, and English insists that this wouldn’t have been enough time to come to an understanding. I can’t expect in-depth context in that kind of quick-hit story, she says. “Do you feel you stepped up to help them understand your disability?” she asks. I do. “It’s unfair to a general assignment reporter, he doesn’t have…he didn’t have the background to cover it, but it wouldn’t have been covered at all if a general assignment reporter didn’t get sent out to it,” she continues. I insist that I understand the job of a general assignment reporter, and that I would’ve hoped that an editor would have caught these things. Still, English goes on to explain the job of an assigning editor and tells me that there’s very little “one-on-one careful editing anymore” due to cutbacks.

Before I can finish my next question, in which I would have asked if a lack of editing is to blame for the article’s inaccuracies, English cuts me off: “You know what, Julia, I can’t be sure that an editor would even be aware of those things because I don’t think that awareness exists in most newsrooms,” she says. I can’t tell if English is frustrated by my questions, her own responses about the lack of knowledge surrounding disability in the Star newsroom, or something else entirely. But it’s concerning to me that so little thinking seems to go into reporting on disability at the Star.

“We tend to respond to the things that become issues, and [disability coverage] just hasn’t risen up as an issue in our history,” says English. She adds that the only issues that have been brought to her attention regarding disability coverage have been concerned with the language used. I’m beginning to understand why more people with disabilities aren’t calling issues to the Star’s attention. I know where English is coming from, yet I feel helpless that all of my conversations with the Star, as I’m told in an email from Carl, will be reduced to a “lunch-and-learn” about disability coverage. As much as Miller and Carl seem willing to learn more about some of my concerns, I’m just another complaint.

Stephen Trumper, a writer and magazine editor of over 30 years and a former professor of mine, has paid close attention to the Star’s disability coverage over the years. The Star set new standards for disability coverage, specifically when Henderson and Turnbull were hired, and this was a “high-water mark for commitment to disability,” says Trumper, who has quadriplegia. “The Star should be applauded for what it did 20, 30 years ago for covering disabled issues, but now it’s embarrassing how little they do. In fact, it’s shameful.”

Even if the mainstream media doesn’t prioritize disability coverage, taking the time to accurately represent people with disabilities in the stories that are written is critical. The tools are there, as are disability community members who are willing to talk. More education in journalism schools and organizations seems like an essential step in this process.

The money I received from the award was certainly helpful, but even more so was everything I’ve learned since the Star article about me was published. My experience as a subject in a story about disability pushed me to do more research and think harder about the experiences of sources, especially those who belong to marginalized communities. I can’t still say I regret applying for the Barbara Turnbull Award. The process of writing this story gave me invaluable experience and made me consider how much is at stake for people with disabilities when speaking to journalists.

Disclosure: Stephen Trumper, who is quoted in this article, was the instructor for the Fall 2019 part of the Masthead course that produces the Ryerson Review of Journalism. He became a source for this story in the spring, when he was on leave.

 

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About the author

Julia Simioni is the newsletter editor at the Ryerson Review of Journalism. Before moving to Toronto, she was an editorial intern at Ottawa Life Magazine. Her journalistic interests range from wellness, internet culture and anything absurd. When she’s not at school or at work you can find her drinking matcha, looking at pictures of her dog or reading anything by Jia Tolentino. She frequently hate-reads Goop.

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