The Disability Online panel took place on Saturday in Panel Room B at Summer in the City 2018. It was hosted by Vix Jensen and featured Georgia Rankin, Oliver Lam-Watson, Hannah Witton, Laura Brouwers, and Jessica Kellgren-Fozard.
Vix welcomed the room and introduced herself as a disability advocate, public speaker, and content creator who has cerebral palsy. She invited the panel to introduce themselves and their experiences. Georgia introduced herself as a beauty YouTuber under the channel MakeupJunkieG and explained that she has undiagnosed skeletal dysplasia. Oliver explained that he creates videos about being a wheelchair fencer on his journey to the 2020 Paralympics, and that he was born with a knee problem which affected his whole leg. He went onto crutches at the age of 15 and “since then, I make the most of it”.
Hannah said that she is primarily a Sex Education content creator who has had ulcerative colitis (a form of IBD) since the age of seven, but had previously “never really considered myself disabled”, instead referring it to a chronic illness during her ten years of remission. At the end of 2017 and beginning of 2018, she needed emergency surgery and is now living with a stoma. Laura said that she is an artist who shares some of her life online and sometimes creates art addressing autism. Jessica explained that she shares her vintage style online, and lives with hereditary neuropathy with pressure palsies and mixed connective tissue disorder, which also gives her postural orthostatic tachycardia syndrome. It affects her nerves, muscles, and organs, and she lives with chronic fatigue and chronic pain. She was undiagnosed until she was 17 when both her arms were paralysed for a year-and-a-half. “Occasionally bits of me stop working, but I like to make videos about how my life is actually really fun!” she said cheerfully.
Vix noted that this was the second year of the panel and it was quite a full room, feeling that this showed the demand for discussions like this. She asked the panel, “How far do you feel that we have a community on YouTube and that our voices are lifted up by the platform?”
Jessica observed that since her channel gained a lot of traction six months ago, she gets asked, “Why are there more disabled people on YouTube now?” Her response is that they’ve always been here – “You’re just noticing/paying attention now.” Hannah said that the internet was incredibly helpful for her during her surgery process. She began searching for advice online regarding stoma bags, watching videos, and reading blog posts, and found there was a digital community of young people who had them. “I saw it was manageable and I could do it too,” she said.
Georgia said she feels that there could always be more people speaking out and being visible with brands, particularly in beauty and fashion. She said she finds that when brands have a certain image, they want their influencers to fit in, meaning she feels she’s not accepted because of how she looks. “The industry needs to be more accepting,” she affirmed, noting that whilst there seems to be some progress in the TV world, she’s not seeing it in the online and beauty industries. Georgia said she wants more visibility so “we don’t see it as a difference, we see it as normal”, and added that she would “love to not have to retweet when a brand uses a disabled person in their ad”, gaining laughter from the audience and her fellow panellists.
Oliver said that “it’s easy to feel that you’re less”, noting that even the word “disability” has negative connotations, implying that people are lacking in some way. He felt that it was important for disabled creators to use YouTube and their community to show that “this is just your normal”. The panel unanimously agreed, with Jessica pointing out that “20% of people in this country are disabled – we are the largest minority!”
Laura moved the discussion to the risk of being “seen as a token”. She observed that, in her experience, a lot of people in the public eye who have autism tend to be inspirational speakers, which can suggest that you have to be a public speaker and “‘inspirational’ to be accepted as part of the disabled community”. Jessica agreed: “I like being an inspiration – but why do you think I am?” She said that if someone sees a person in a wheelchair out and about, and mentally jumps to calling them “inspirational” based on appearances alone, that’s problematic. “Find out something about that person and then find them inspirational,” she advised.
Vix noted how important it was to use the platform to amplify the voices of disabled people, as she finds that they are being steamrolled with regards to issues like the banning of plastic straws. Jessica, who recently created an extensive video challenging such bans, raised an eyebrow and took a sip of her drink with a plastic straw. She briefly discussed her video, explaining that she tried to address all the arguments she could think of in that video as disabled people needed plastic straws (and specifically plastic) but were being refused them. “It’s excellent that people want to help the environment and cut down on plastic,” she said, “and disabled people aren’t exempt. But they should be able to do it where they’re able to do it.” Jessica also pointed out that plastic straws only made up 0.025% of ocean waste.
Vix then asked whether the panellists would like to share any advice for people with chronic illnesses or disabilities who wanted to create videos. Georgia felt that people should just do it and not care about what others think. She shared that she used to be concerned about other people’s judgements until she decided to let that go: “I’ve got a wheelchair and blue lipstick on – I’m bold enough!” She added that, in her experience, YouTube was a less judgmental space than real life and provided an escape for her, and said that by creating videos, “you’re representing other people and your followers will then be inspired by you – it’ll make a domino effect”.
Oliver shared that when he first started on YouTube, he was self-conscious about his leg and would never have photos that showed below his waist. When he found that people had been privately discussing his disability amongst themselves, he decided to start talking about it online. “I’ve already told everyone everything online. There’s no room in my life for someone like you to talk about that behind my back,” he said.
Hannah, Jessica, and Laura then discussed blacklisting slurs or certain words in YouTube comments. Hannah and Jessica said they do not use the blacklisting feature, but understood that it could be useful for those starting on YouTube, and suggested having a moderator for comments. Laura felt that not hiding comments that contain slurs “gives you an idea of what we hear as disabled people”, and that “it’s important for neurotypical people and able-bodied people in general to see the reality”.
The conversation then moved on to how the creators discuss their disability online. Hannah has recently had to adjust to a shift in content post-surgery, and whilst she still does sex and relationships videos, she’s found that creating videos about her surgery and stoma bag was part of the healing process for her. She expressed her gratitude that, as she already had an audience online, there were a lot of subscribers who had stoma bags too and were ready to help and support her. Jessica agreed: “One of the best things about YouTube is that I don’t feel alone anymore.” She said she found it comforting that although she has to spend a lot of time in bed, so do many others and they come together online. Georgia discussed her chronic pain and how she has found that people find “the more raw things are, the more fascinating it is”, but warned against voyeurism. Laura said that, as her disability is neurological, she doesn’t like to share how she experiences it. She said that despite the severity of her condition and being institutionalised for most of her teenage life, she used to feel that she had to justify how she qualified as handicapped. “Not everyone who has a disability has to show they’re disabled,” she said.
The panel then took questions from the audience. One attendee asked how they came up with ideas for content. Jessica shared her method to the awe of the other panellists: she schedules her videos using Google Calendar, creating an event for the videos that she wants to make – “Currently I have 200 that don’t have a day!” The panellists also said that they found the comments section and conversations with people in their lives to be the best places to generate ideas.
Due to time constraints, the panellists were only able to take one more question, and were asked by an audience member to discuss how they deal with negative reactions to them talking about their issues online. Laura said she felt one of her biggest problems was being used as a tool in the false belief that vaccinations cause autism. She added that it’s not worth paying attention to negativity like that and “there are better discussions to have”, and said: “I don’t think those conversations are worth having with those kinds of people.” Laura rounded off the discussion by saying, “I don’t think anybody with a disability should have to compromise what they speak about because of fear of being misused.”
Photos by Rebecca Need-Menear.
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