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SPOTLIGHT: ALLISA SWANSON AND WINNIE LUK ON WORKING WITH DISABILITY
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text-decoration: underline; } </style> <div class="body"> <h1>SPOTLIGHT: ALLISA SWANSON AND WINNIE LUK ON WORKING WITH DISABILITY</h1> <div class="meta"> <span class="author">iatse891</span> <span class="divider">|</span> <span class="published">Oct 29, 2024</span> <span class="divider">|</span> </div> <div class="text"> <p><em>October is National Disability Employment Awareness Month — an opportunity to champion inclusion and accessibility in the workplace for people living with disabilities. In this Spotlight, 891 Costume member Allisa Swanson and Executive Director of the Disability Screen Office Winnie Luk share their experiences working with disability and how union members and industry leaders can help make the motion picture industry more accessible.</em></p> <p>Allisa Swanson, an 891 Costume Department member for 25 years, started losing her hearing in high school. By the time she was in her twenties she needed hearing aids. Growing up, she always knew she wanted to be a costume designer, enamoured by the costumes in movies such as <em>Star Wars </em>and <em>Alice in Wonderland</em>. Some of her earliest memories are tied to what she or someone was wearing. Now an award-winning costume designer for film and television productions shooting in BC, Allisa rose to the top of her craft by relying mostly on her own creativity to manage challenges that come with working with a disability.</p> <p>“I'm hard of hearing — that's my disability. When you take my hearing aids out, I can't actually hear anything anymore, but it hasn't led to a speech impediment because I lost my hearing a little bit later in life, so I had gone through speech. I think I was losing it in high school because my mom used to always yell at me for yelling. I would come home from school, and she'd be like, ‘Turn the volume down.’ She figured it was because I was in theatre that I was so loud.”</p> <p>Today, Allisa is the president of the <a href="https://www.caftcad.com/executive-board-allisa-swanson">Canadian Alliance of Film and Television Costume Arts and Design (CAFTCAD)</a>. She has earned numerous awards for her work in the motion picture industry, using her own tools to navigate work with a disability. Her toolbox includes her hearing aids, knowing how to lip-read, and finding creative ways to constantly ask people to repeat themselves.</p> <p>“I want people to know I wear hearing aids because I still don't always hear things 100%, or I may answer people, and they look at me, and I'm like that was not the question you asked me.”</p> <p>“Every once in a while, I try to sort of make light of it. If somebody's saying something to me and I don't quite understand, I will ask 'Did you say that a duck is wearing a toupee?’ If that's what my brain actually heard, as long as it's, you know, not rude, I will repeat that out loud. Because I do it in a funny manner, then people remember easily and I don't have to retell somebody.”</p> <p style="text-align:center;"><img alt="" src="/site/assets/files/4235/allisa_with_mug.441x0-is.jpg" width="441" /><img alt="" src="/site/assets/files/4235/allisa_with_paint_splatter.441x0-is.jpg" width="441" /></p> <p>Allisa’s sense of humour makes it easy to connect with her, but the jokes don’t offset the serious extra effort she has to put in each day.</p> <p>“I’ll leave some meetings and be totally exhausted because I've had to strain so hard,” she says, explaining that it’s not always possible to be close enough to a speaker to hear them clearly or lip-read.</p> <p>“It can be emotionally draining just trying to keep up with what everybody's saying all the time. I've been doing it for so long that it’s kind of just part of my day, but we have really long days.”</p> <p>October is National Disability Employment Awareness Month — an opportunity to champion inclusion and accessibility in the workplace for people living with disabilities. More than a quarter of Canadians live with a disability that limits their daily activity. In a <a href="https://www.statcan.gc.ca/o1/en/plus/5980-disability-rate-canada-increased-2022">2022 survey launched by Statistics Canada</a>, 27% of Canadians aged 15 years and older reported living with one or more disabilities, an increase from previous years.</p> <p>IATSE 891 recognizes the need for more conversations and action to make workplaces more accessible and inclusive, and to ensure people with disabilities have access to accommodations that reduce barriers to employment.</p> <p>Allisa recounts some tough days in the industry while figuring out the best role for her as an ambitious creative who is hard of hearing. Working on set with walkie talkies that weren’t compatible with hearing aids was a nightmare. In those early days of her career, she’d often have people yelling at her, unaware that she couldn’t hear.</p> <p>“I had the hardest time as a set supervisor because there's so much noise coming at you from all angles when you're prepping and I'm not able to understand what direction things are coming at, and I don't hear that well behind me.”</p> <p>“I found that I got yelled at probably more often because I was missing things so people would yell in my direction, and not even like a nasty yell, but just voices raised heading in my direction, and it gave me a little bit of anxiety, although we didn't know to call it that back then.”</p> <p>Today, most people on her team know she is hard of hearing, which helps communication run more smoothly, but now and then she’s forced to improvise. During costume fittings, for example, actors open up to her and end up whispering when they forget she’s hard of hearing. Sometimes, she says, she just has to smile and nod. In meetings, meanwhile, she tries to sit right next to the director so she can read their lips. As a back up, she makes sure her assistants take good notes.</p> <p>Advocating for yourself, she points out, is a skill many people living with disabilities end up learning out of necessity. Part of Allisa’s job and every day living, for example, involves accepting a constant need to ask people to repeat themselves.</p> <p>“My daughter is also hearing impaired, so we figure it's genetic. She's just starting grade 6, so she's much younger than I was when I started losing my hearing. It's one of the things we talk about all the time. I remind her that mommy is always asking her to repeat herself and I need her to do the same thing. Nobody stopped talking to me and stopped being my friend because I've asked them to repeat themselves.”</p> <p>When asked if she ever considered asking for more supports at work, Allisa says that the thought never even occurred to her.</p> <p>“Though I like to think I'm super important as the Costume Designer on a show, we all know where we sit in the hierarchy. I'm important to some people, but production as a whole tends to look at us all as we're just crew. So I sort of have that mentality a little bit, and it's never really occurred to me that if I said, ‘Hey, could you guys do this for me?’ that they would actually do something for me. So, I've never really thought about what could be done.”</p> <p><strong>MAKING THE SCREEN SECTOR MORE ACCESSIBLE</strong></p> <p>When asked what supports there are for people with disabilities currently working in the industry, Winnie Luk says there aren’t enough. As the Executive Director of the new Canadian national non-profit, the <a href="https://www.dso-orphe.ca/">Disability Screen Office</a> (DSO), and as someone who has lived with various mobility issues since her mid-twenties, she is working hard to change that. She has been in conversations with IATSE 891 and other labour unions and industry partners to outline a grand strategic plan for creating more supports and pathways for inclusion in the motion picture industry for people living with disabilities.</p> <div style="text-align:center;"><img alt="" src="/site/assets/files/4235/winnie_luk_headshot_may_2023.533x0-is.jpg" width="533" /></div> <div> <p>"Everyone will have a disability at one point in their lives. Disability and accessibility is personal and everyone should be prioritizing access,” says Winnie.</p> <p>“The idea that this has been ignored for so long does yourself, family, friends, colleagues a disservice. It does not make sense that we're not planning for this because it's going to happen to you, and if your organisation or your employer are not thinking about it, talking about it, putting it in their strategic plan, you should be asking why.”</p> <p>Winnie describes herself as a builder with experience growing grassroots organizations from the ground up. Her work supporting strategic plans as Director of Operations and Events for the <a href="https://insideout.ca/">Inside Out Film Festival</a> led to it being one of the biggest queer film festivals in Canada. Meanwhile, her advocacy work for <a href="https://www.rainbowrailroad.org/">Rainbow Railroad</a>, a non-profit helping LGBTQ2SIA+ asylum seekers, helped save thousands of lives.</p> <p>Severe sciatica and burnout led her to re-evaluate her relationship with work after recalling times when she would be lying on a boardroom table and forced to work horizontally while her team met around her because of her severe pain. Helping queer asylum seekers travel to safety was high stakes and made it hard for her to feel like she could take breaks, but eventually her body let her know she needed a different pace of work.</p> <p>Part of what she emphasizes now is the importance of prevention and safety in the motion picture industry and the need to create a culture where workers have more choices and aren’t driven to burnout.</p> <p>“I talk about prevention a lot because my lens comes from doing work in life and death situations and when I came back to film and entertainment, I felt it was important to remind people this work is not life and death. There is no good reason why our hours are so gruelling,” says Winnie. “Mostly it's to support and help the bottom line of very few people who are gatekeepers of the industry who want to save money, but that can’t come at the cost of sacrificing the wellbeing of workers.”</p> <p>Winnie says she understands there’s a percentage of workers who prefer to work long hours for a few months and then take off for the rest of the year, but she notes that’s a privilege not everyone can claim.</p> <p>“When it comes to working intense hours, the notion that everybody can do that, or that everybody wants to do that, is ridiculous,” she says. “The most important thing about disability advocacy and accessibility work is freedom of choices.”</p> <p>The mission of the Disability Screen Office is to break down accessibility barriers and foster authentic representation on and off screen. Right now, they are collecting data on current gaps in support and barriers to participation, which will culminate in a Best Practices Guide for supporting people in the industry with disabilities. The goal is to create industry standards for disability representation and inclusion in the Canadian screen sector.</p> <p style="text-align:center;"><img alt="" src="/site/assets/files/4235/winnie_luk_presentation.441x0-is.jpg" width="441" /></p> <p>The DSO is also creating an online Industry Resource Hub on their website, which will include a searchable directory of disabled talent and creatives, consultants and facilitators, accommodation service providers, and accessible venues.</p> <p>“More stories are wanting to centre disabled narratives or engage disabled industry members to work —whether writers, editors, directors, producers, actors or designers. What we want to do is create a space where people can connect and find one another.”</p> <p>These are just some of the projects underway by the DSO to make the industry more accessible and inclusive, and Winnie says there’s a special role for unions.</p> <p>“We have the <a href="https://www.canada.ca/en/employment-social-development/programs/accessible-canada.html">Accessible Canada Act</a> enacted in 2019 with a deadline of creating a fully accessible nation by 2040. Each province has their deadlines as well. Unions can rally around creating introductory videos about people’s rights and responsibilities as outlined in the legislation, and make it part of mandatory training.”</p> <p>The DSO is also working on creating a Production Accessibility role — someone trained and certified to help productions look ahead to make filming more inclusive both in front of and behind the camera.</p> <p>“We want to develop and formalise and train this new role, and we need union labour organisations buying into this,” says Winnie. “The role does exist at a coordinator level in the U.S. but here we want to elevate it to include decision-making power and be inserted at the very beginning of the life cycle of a project. That way they have influence on budgets and locations and scheduling, because what we need for accessibility to work is to be proactive.”</p> <p>Allisa says that the industry needs to be better at proactively choosing buildings and locations that are wheelchair accessible, for example.</p> <p>“We often choose weird buildings that are super old that nobody else wants to move into because they're cheap. We have to start making it so that there are elevators if there's more than one floor. That should just be one of the caveats. Even if we need it to be cheap, it has to have an elevator,” says Allisa.</p> <p>“We are automatically limiting people who need wheelchairs or crutches because some of our locations are not accessible. Having offices that allow better access and elevators means if people get hurt, they do not have to quit their job because there is no elevator and they're on crutches.”</p> <p><strong>SHARE YOUR STORIES</strong></p> <p>Beyond the need for proactive planning and building new roles to advance accessibility, Winnie wants to see and hear more people in the industry start to share their own stories.</p> <p>“There's a whole generation of folks that were told never to talk about it, sweep it under the rug, ignore it. But there's a younger generation coming up who want to be more aware, who want to be diagnosed.”</p> <p>“So many industry leaders have now divulged their disabilities to me. The fact that disability has not been discussed or talked about for so long, many folks are coming to me in tears. It's very emotional. It's a lot like coming out for folks with non-visible disabilities. As someone who has worked in the queer community for 20 plus years, I see many parallels between the disability community and 2SLGBTQIA+ community. Imagine being a leader with some influence in this industry but you still feel like this is one aspect of your life that you can't share or talk about.”</p> <p>“So, something I would bring forth to the industry is a call to really start sharing your stories and start talking about living and working with disabilities.”</p> <p>Allisa wants to see more stories shared too, and reflects that storytelling is at the heart of motion picture production work.</p> <p>“Part of our job of storytelling and as storytellers is to include more people. We still have a little bit to go for including people with disabilities, particularly ones like mine that you don't see,” says Allisa.</p> <p>She would like to see more people on screen wearing hearing aids but adds that efforts on better inclusion need to be more than zeroing in on someone’s disability as a plot device or storyline. As a costume designer she notes there are creative ways to style characters and their hair to make someone’s hearing aid visible without overly focusing on it. What’s important is ensuring characters with disabilities are portrayed with real depth and humanity.</p> <p>“It doesn't have to be pointed out to be made a big deal of. It's just that's who they are. The story is about the person. You just happen to notice that they are wearing a hearing aid. If we can add that in commercials and TV series then that helps to make it so that people see themselves, they see their mom.”</p> <p style="text-align:center;"><img alt="" src="/site/assets/files/4235/allisa_-_early_career.jpg" width="634" /></p> <p style="text-align:center;"><img alt="" src="/site/assets/files/4235/allisa_-_collage_awards_and_dog.png" width="641" /></p> <hr /> <p><em>Written by Claudia Goodine, Copywriter for IATSE 891. Special thanks to Allisa Swanson and Winnie Luk for sharing their stories. </em></p> <p><em><strong>Are you an 891 member working with a disability interested in being featured in an upcoming Spotlight? Know an 891 member making BC’s motion picture community a better place for workers? Help shine a light on the people making this Union a community of inspiring creatives, builders, and advocates for workers. Email spotlight suggestions to <a href="mailto:communications@iatse.com" target="_blank" rel="noreferrer noopener">communications@iatse.com</a>. 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