YouTube is a space where people with disabilities are able to present their lives and show what living with a disability is truly like, with full control over their own narratives.
Whilst this has certainly widened understanding and discussion of disability within the digital space, is the pressure placed on these creators too great, and are these creators influencing opinions beyond the YouTube bubble? We sat down with Lucy Edwards, Oliver Lam-Watson, Daniel M. Jones, Hannah Witton and Jessica Kellgren-Fozard to find out.
The discussion quickly turned to the unique pressures disabled creators experience. One of the first to be brought up was an urge to overshare in order to answer people’s questions about disability.
“It’s a balancing act between sharing intimate, genuine content with viewers and scratching the surface of things you don’t want to share,” stated Oliver. “If I just share it, everyone already knows. Only you can decide if something is right for you to share, but over time you become more comfortable with your audience and yourself on camera.”
Although, he cautioned that people should never push themselves to share things they aren’t comfortable with on YouTube, “It’s a mutual relationship and you need to feel comfortable with that.”
Daniel told us about how “people ask really personal questions”, and explained that on rare occasions has emailed viewers individually in response to questions he’s received during live streams. However, overall, he feels that “the more open I am, the better it is for everyone”.
“If we want to be transparent advocates, I think we should all do that,” he says.
Jessica emphasised that, whilst she tries to be as open as possible with her audience, she won’t share her whole life with them. “My channel is all about accepting yourself with whatever hardships you may have and I try to model that by always being open when it comes to my own disabilities and experiences living with them,” she explains. “Despite that willingness to share, there are definitely things that I don’t talk about: situations that someone else involved hasn’t given me permission to talk about and my personal care because it’s too intimate to put on the internet!”
Hannah’s experiences this a little differently. “I don’t feel much pressure to share about my personal experiences because I’m genuinely happy and comfortable to share those,” she told us, before discussing the pressure she often feels to weigh in on disability politics and advocacy in general. “That’s just because it’s such a new world to me and I’m very much learning. If people ask what my opinions are on some issue, my answer most of the time is, ‘I don’t know, I need to understand the situation better first!'”
Lucy pointed out the importance of being entirely yourseIf in videos. “I think each video I post and every bit of content I appear in proves that living your life and being unapologetically you wins!”
“I think I get the right balance between sharing enough of my life versus sharing absolutely everything to my audience,” she adds. “It’s important you have a strong sense of self identity on and off social media.”
An encouragement to overshare is, of course, not the only issue that comes with being openly disabled online. Oliver told us about the pressure he feels to make inspirational and motivational content, which he feels he does, but that he tries to stray away from “toxic positivity”.
“Sometimes I don’t feel good. Some days I feel quite down,” he explains. He worries about his videos coming across in this way, as he feels like he’s asking for sympathy. However, he goes on to add that when he has shared his struggles with his audience, people have been very understanding, and he wonders if this issue is worsened by creators going along with this stereotype of being constantly motivational, rather than the audience themselves.
Daniel feels a major issue is “reflection and relatability”, saying “there is pressure to be relatable to everyone” before adding that a lot of worse days are simply not filmed.
“Why would I film that?” He says. “It’s interesting. You try to be transparent and fluid, but there are some things you’ll never see. It’s a balancing act of keeping people feeling it’s real enough. People compare their life to yours, but nobody is the same.”
“It’s interesting. You try to be transparent and fluid, but there are some things you’ll never see. It’s a balancing act of keeping people feeling it’s real enough. People compare their life to yours, but nobody is the same.”
Hannah stated that, for her, “there’s a pressure to always have something new to say about it”, and this simply isn’t realistic. “Two years ago, my life completely changed, but now I have a new normal and I just get on with it for the most part.”
Meanwhile, Jessica says, “Because I am open about my condition, I have amazing fans who understand when I am too unwell to post a scheduled video or attend an event. The pressure for me is that I want to, but I have to say no sometimes.”
The topic of representation on YouTube then came up. Is there enough? What can we do to improve it?
As Oliver put it, “’enough’ is a difficult thing to comprehend”. He doesn’t want people to feel like they have to represent disability if they don’t feel comfortable doing so. “I’d really encourage people, if they can, to pick up a camera and start a conversation.” He emphasised the important role of disabled people on YouTube, in that this allows individuals to answer questions and educate, which, in a way, can make life easier for others.
“We’re disabled by society in the way they view and perceive us,” he says, and he feels that through education this can be changed.
Daniel emphasises that, whilst there are some great disability advocates on YouTube, “if you look at, for example, lifestyle vloggers, there are a bazillion big YouTubers. When you look for autistic YouTubers who have a large following, there are very few. I don’t think that it’s anywhere near what it needs to be”.
“ If you look at, for example, lifestyle vloggers, there are a bazillion big YouTubers. When you look for autistic YouTubers who have a large following, there are very few. I don’t think that it’s anywhere near what it needs to be.”
Hannah feels that there are two answers to this question. “Yes, there is plenty of representation on YouTube of all sorts of people from all sorts of backgrounds, she says. “But, no, if you look at the most popular channels, the most popular kinds of content, the majority of what rises to the top is white, straight, able-bodied and middle class – and, to be fair, until two years ago, I ticked all those boxes!”
Lucy explained how important she feels her content is in terms of representation. “I love sharing my life online because if another blind person stumbles across my content, it gives me such joy,” she says. “It’s about creating a community, people that understand. It’s also about educating others. I put myself out there online because I think it’s important to show people that having a disability doesn’t end your life. It’s just the beginning of a different one.”
She continues, “Maybe some would say I share too much of my life and my relationships, but if I didn’t do that, then where would representation be?”
Elsewhere, Jessica discussed the growth in the number of disabled creators. “There are more and more creators sharing their disabilities online, and it is an amazing, positive thing to see.”
She really emphasised how important this is for the disabled community at large. “We need to speak out, so others can hear and see us. ‘You can’t be what you can’t see’ is a phrase I’ve always stood by. One of the best things about YouTube, to me, is the vast range of representation you can find on its platform.”
The conversation then moved to the misuse of disabled people’s content as “inspiration porn“, prompting a discussion about what can be done. Daniel made it clear that companies will always share content in this way, but added that videos can’t be shared without the person’s consent. He says, “As disability advocates, we gotta stop selling ourselves out!”
Hannah focused on the importance of challenging this when you see it happening. “Jessica Kellgren-Fozard does a great job in her videos of explaining why ‘inspiration porn’ is a tad problematic, and hopefully by educating more people about why it’s not great, it’ll empower people to challenge it.”
Jessica summarised the discussion in two simple sentences. “I hope that with increased visibility and better education of people’s differences, whether you’re a disabled or non-disabled person, that someone’s achievements will be valued contextually and not just held against their physical or mental abilities. I think, really, the idea of achievement should be in the eye of the beholder and not the subject of others.”
“I hope that with increased visibility and better education of people’s differences, whether you’re a disabled or non-disabled person, that someone’s achievements will be valued contextually and not just held against their physical or mental abilities. I think, really, the idea of achievement should be in the eye of the beholder and not the subject of others.”
The conversation moved to representation in wider media, and whether disabled people online were influencing mainstream media to represent more people with disabilities regularly. Oliver made it clear that he doesn’t know. “I’m seeing disabled people a little more in media, but often they are played by abled actors,” he says. “I think it doesn’t make sense.
“One of the things I find most annoying in media is it is usually disabilities that are visually appealing,” he goes on to add. “There’s room to represent more people. I’m on crutches, but I have all my limbs.”
He emphasised that we shouldn’t differentiate between disabilities based on how visually appealing they are.
In his response to the question, Daniel said he’d like to think so, but “unfortunately, mainstream media has big difficulty representing disability, especially mental health or neurological conditions”.
One example happened to Daniel himself. After being chosen to be on a popular TV show, he was dropped just three days before filming was due to start, as the show wanted to “play it safe”. He added that the fact he was even considered for this show is down to his work online, so there is a positive impact from digital representation, but it’s clearly not enough.
“I don’t know if we can claim that online representation in YouTube videos will change the way Hollywood casts movies,” said Hannah. “But there is something to be said for baby steps. If online communities are helping people realise just how unrepresentative mainstream media is and complain about it, maybe – just maybe – some change will come.”
“I don’t know if we can claim that online representation in YouTube videos will change the way Hollywood casts movies, but there is something to be said for baby steps. If online communities are helping people realise just how unrepresentative mainstream media is and complain about it, maybe – just maybe – some change will come.”
Lucy offered a unique insight as a trained journalist. “I love mainstream media,” she says. “I see the value in both mediums. I would say the main difference is what audiences you are targeting. Who are you connecting with?”
Jessica told us how statistically mainstream media is not representative enough. “Almost 20% of people in the UK have a disability, but still only 2.7% of characters in films do. It’s my hope going forward that we’ll start to see a better representation of our society as a whole.”
She also pointed out that the diverse experiences seen on YouTube may not be representative of wider media just yet. “The great thing about online content creation is that it’s driven by the audience and what they actually want to see, rather than media big bosses,” Jessica explains. “This means there is a greater scope for representation because the audience wants to see a world on screen that they can relate to. This means that YouTube and other online platforms are really diverse, culturally rich places, but I’m not sure that we’re yet seeing a reflection of this in mainstream media.”
After delving so deeply into the unique joys and trials of being disabled on YouTube, one thing became incredibly clear: while their experiences varied, all the creators loved the camaraderie and connection that came with being disabled on YouTube. Despite its unique difficulties, everybody we spoke to easily relayed what they love about being a disabled content creator.
For Oliver, “it’s reaching out to people and them reaching out to you, and having interactions I never would have usually had and, it sounds stupid, but being the person I didn’t have growing up with a disability”. He wants to make videos and interact with people like himself at that age, and says he enjoys “being stupid on camera”.
Daniel also spoke about the community and “having that ability to communicate with people who get you”. He feels “there’s a sense of camaraderie and feeling like I belong”.
“The best thing about being a disabled creator on YouTube is definitely knowing that I’m helping people by speaking publicly about my experiences,” says Hannah. “And by showing my scar and stoma bag photos and videos online.”
“The best thing about being a disabled creator on YouTube is definitely knowing that I’m helping people by speaking publicly about my experiences, and by showing my scar and stoma bag photos and videos online.”
Lucy told us that uploading YouTube videos allowed her to accept her blindness in a completely different way. “Without my blindness, I wouldn’t be Lucy,” she explains. “I have always been someone who loves to be in front of the camera. A massive part of my personality is that I love to be social – I don’t stop talking!
“My disability is part of me and not all of me,” Lucy continues. “It does not define me but, it’s an added extra of Lucy. Something that I have learnt to understand, grieve and conquer!
“When life gives you lemons, make lemonade because otherwise the lemons will just go off! I don’t want to sit here wondering what my life could’ve been if I was sighted Lucy. I want to think of each day like a new way to learn and live and have fun.”
Jessica highlighted the opportunity for connection, as well as the overwhelming positivity she receives from her audience. “I get to speak from the heart on a subject that is so personal to me and that affects my daily life – often not in the best ways, but people actually want to hear more!
“They feel connected and spoken for,” she adds. “They open up and share their stories to me and to one another. I feel by starting my channel it created a space for a community I wish I had been a part of when I felt so alone as a young person.
“I started making videos with the hope of spreading positivity into people’s lives. What I didn’t realise was how much positivity I would find in return.”
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