The Disability and Disfigurement Online panel took place in Panel Room C on Saturday at Summer in the City 2017. It featured creators Grace Mandeville, Nikki Lilly, Krystal-Bella Shaw, and Jessica Kellgren-Fozard. It was chaired by Vix Jensen.
This was the first time a panel discussing disability and disfigurement had taken place at Summer in the City, and the panellists were all very excited to begin.
After asking the panellists to introduce themselves, Vix kicked off the discussion by talking about how YouTube can be a positive and empowering space for creators, and how it can give them the chance to help and educate others.
Krystal has been diagnosed with dyspraxia, autism, and Asperger’s, as well as having a neurological disorder. “I was only 18 when I was diagnosed with a neurological disorder and I couldn’t find any help online, and so I decided to be that person who provides the help online,” said Krystal. She went on to add that people can then use educational videos like hers to help explain their disability to family members.
“Some people find it hard to have a voice about themselves,” she explained. “It can be a tough type of thing to talk about to family, so it’s given them the platform and the voice that they didn’t have to share with friends and family.”
Nikki has a condition called arteriovenous malformation, “so basically it causes me to have really bad nosebleeds and the raised [part] on my face”. On her channel, she talks about her life, her condition, her treatments, and her passion for makeup and baking.
Speaking about the supportive community on YouTube, she said: “I was at home a lot after I was diagnosed, so you can get to be in touch with the outside world and it definitely helps raise your confidence because it’s kind of like you’re talking to your friends, and you get those lovely positive comments. It’s really rewarding, and everyone who follows me, I would consider as my friend.”
Grace, along with her sister Amelia, upload comedy skits onto their shared channel, and she has often used her disability as a mechanism for humour. On the panel, she referenced several videos in which she uses her foreshortened arm for comedic effect.
“Usually if there’s something awkward, people don’t know how to handle it,” she observed. “If you make a joke about it, they laugh with you, and that’s how they learn more. That’s kind of my tactic. I just think to break boundaries sometimes you have to allow people to laugh because people don’t realise they can laugh about it, and once they do, then you can just get on with your lives together.”
Many of the panellists have experienced hate comments on their videos, as well as intrusive questions about their disabilities. Vix asked them how they deal with this.
“The comments I’ve got [are] things like ‘What condition do you have?’, or ‘Why do you look that way?’, or ‘You’re not normal’ and things like that,” shared Nikki, “and when I see things like ‘You’re not normal’ and stuff like that it makes me think, ‘Who is normal?’ Like, no-one in this world is normal, and because my condition is so rare […] it’s hard for everyone to know what AVM is, and so I think with my channel, and through getting hate, what I’m just trying to show people and teach people is what my condition entails and why I look a certain way, but that it’s not a bad thing to look this way.”
Jessica has “a big range of complex neurological disabilities”. She talks about vintage fashion and style and LGBTQ+ issues on her channel, as well as using it as a platform to educate people about her disabilities and chronic illnesses.
“People who keep coming back and watching my videos, they obviously know my disability, they know what’s going on, but people who come for the first time and are like, ‘Wait, hold on, that deaf girl has a really good voice, it’s definitely a lie, it’s all fake’,” said Jessica. “I don’t why any people think that – like, what is their motive?”
“Some people say, ‘You’re too attractive to have a disability’. You know – ‘Oh, you’re so pretty, I can’t believe you have a disability’,” said Krystal, who expressed her bemusement at this statement. She also described comments she’d received along the lines of: “‘Oh, you don’t have a neurological disability, you’re just not in line with your body, you just need to take a few more tablets, some Vitamin C.'”
“The good old cure comment,” interjected Jessica, jokingly.
“It upsets me when I do a collab with a YouTuber and people start commenting on their video [with] negative things towards my disability, because they feel really awful about it,” admits Grace.
“I just don’t think it’s fair for that person to have that on them, and they start apologising to me and saying, ‘You know, I’m really sorry that my audience did this’, and I’m like, ‘It’s not your fault’, but it does make them feel bad, and you just kind of have to forget about it,” she added.
Vix added that oftentimes people are ignorant of disabilities and that it’s not necessarily a problem to ask people questions about them, as long as you go about it in a polite way. “I think we need to show people that you don’t need to be scared to say, ‘Oh, what’s wrong?'”
To this, Krystal responded: “In my videos, I’m as open and as clear as possible about everything so that my viewers feel comfortable to talk to me about anything – you know, it’s given them a place where they can ask.”
“It’s recognised as hate speech if you’re rude to someone based on their sexuality, whereas when it came to disability, people were horrible to me at school and the teachers would never call them out,” said Jessica. She pointed to the lack of education in schools about disabilities as a cause for ignorance around the topic and emphasised that it’s something that they need to build on.
“I agree with you,” replied Grace, “which is why I think actually this panel is so important. We’ve all been dying to have this panel happen since… well, since Summer in the City have started having Summer in the City events.”
On the subject of visibility on YouTube, Grace added that she felt that it was important for more people with disabilities to start speaking out on the platform: “We can’t change the amount of people that have a disability online unless people start taking the risk.”
Vix then asked the panellists how they felt about the representation of disabilities on YouTube, and what their personal goals are to improve representation on the platform.
Jessica felt that there are changes YouTube could make to ensure the platform is more accessible; for example, improving the quality of automatic captions. “I can’t even watch my videos, I have to wait for my friend to do the captions for me,” she said, also adding that, for her audience, she feels “so bad that I can’t have captions immediately.”
Grace spoke about her experiences through her acting career, emphasising that it can be very challenging to fight for equal representation in traditional media. One of the reasons she values YouTube is that “you don’t have to ask anyone’s permission”.
To this, Jessica responded that if YouTube creators could show that there is a market for content which discusses disabilities, this would increase the propensity of traditional media to cover it. “Fight the power,” added Krystal, which was met with laughs all round.
“My main goal is to grow my channel and get more in touch with people all around the world,” said Nikki, “getting [new audiences] aware about disabilities – not just my own disability, but all disabilities.”
“I’m personally a great believer in soft activism,” shared Jessica, “which sounds like such an oxymoron, but I think that the way to change public perception, to change society, is very subtly. It’s by inserting characters into a children’s storybook, who happen to have this [disability], but you know, it’s just kind of mentioned – it’s not a plot point or anything.”
When Vix asked if anyone had any questions, one audience member asked for the panellists’ advice on growing an audience online, especially when your videos are about your disability. “I understand it can be demoralising sometimes when you’re like, ‘I know there is an audience for it – where are they?'” said Krystal.
“Just post it wherever,” she continued. “Like, don’t be afraid to spam, because I know with other kinds of things it’s like, ‘Don’t spam everything, it’s so annoying’, whereas you have something really important to tell. So don’t be scared to send it everywhere, because you have a right to do that, you know? Not everyone knows to look for that content, so sometimes you have to go out and look for your audience.”
Photos by George Yonge.
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