Neurodiversity & Disability on YouTube with Jessica Kellgren-Fozard
Dec 01, 2023 – minute read
Dec 01, 2023 – minute read
Every single person on YouTube experiences the world differently and for those with neurological conditions like autism or ADHD, the platform can be an opportunity to share experiences, find community and embrace differences.
Disabled and queer creator, Jessica Kellgren-Fozard, started posting videos on YouTube back in 2016 because she saw it as a more accessible option than traditional media. As someone who is deaf and disabled, content creation allows her to manage her schedule and space in a way that works for her and her body. Her channel — which recently hit 1 million subscribers! — is well known for starting unique and nuanced conversations about disability history and advocacy. Despite this, Jessica went her entire life up until this year not realizing she has ADHD.
Looking to learn more, we sat down with Jessica and talked about late diagnosis, neurodiversity and accommodating yourself as a disabled creator.
Jessica: My channel primarily covers chronic illness, disability and LGBTQ+ issues. It's sort of an edu-tainment type of channel. I like to think that I am helping people to learn about new areas or helping them to gain a deeper understanding of different lives, different ways that the world can look in a really positive way. I think a lot of the stories that we have about disability, about chronic illness, even about LGBTQ+ stories are often quite sad. I really wanted to have a place where I could share happiness and queer joy. And I love that I'm able to do that and have a place where I can share that.
Jessica: Yeah, I had a really interesting pathway being diagnosed with ADHD. I already have two genetic disabilities that I was born with and they have a whole host of symptoms. I have chronic pain, chronic fatigue, brain fog, a thing called postural orthostatic tachycardia syndrome which affects my ability to stand up, so I couldn’t just point to a set of these three things and easily add them up to ADHD. It was difficult for me to be able to recognize if symptoms were normal for me as a disabled body or part of something else. It really took outside influences and my friends who had ADHD being like, "Oh, Jessica, you should get this checked out."
I cried with relief when I was diagnosed, because it was very validating. There were so many things that looking back I'd really struggled with and then just to know, oh wait, these are all this thing? Gosh, wow, this is lovely! Brilliant! Wonderful! And it felt so empowering as well.
“ I think a lot of the stories that we have about disability, about chronic illness, even about LGBTQ+ stories are often quite sad. I really wanted to have a place where I could share happiness and queer joy.”
Jessica: I think a lot of people with ADHD cycle through all the different types of organizational planning stuff. I use Google Calendar, but I don’t use it just to know where to go at certain times. Instead, I have my color coordinated to-do list with filming in one color, writing in another, interviews like this one in another, etc. It’s a really great organizational tool for me.
But the main thing that really changed with my diagnosis was recognizing that there are some things that just are not going to work. I don't need to bash myself over the head about being a pretty rubbish neurotypical person. I could just be a really great neurodiverse person, and that's fine! Batch doing content doesn't work for me personally. That's not how my brain works. Okay, fine! I don't need to worry about it or beat myself up.
Jessica: Oh, absolutely! I really think people who are neurodiverse are the most creative, interesting, inspiring people I've ever met and I think my ADHD really gives me this sense of creativity.
When I was a child, adults used to tell me, "It's 2:00 AM, you have to go to sleep!" and I tried to explain, "How could I possibly sleep? Inside my brain right now, it's like I'm writing five different books, having four different conversations and putting on plays all at the same time." And they're like, "...could you not just stop?"
No, I can't. I can't stop, but I’m wonderfully creative! I could read through seven books in a day when I was a child and I have this ability to create and come up with stuff. I've got a list of 250 videos to film, and whenever people ask how I come up with ideas for videos, I get to tell them that that’s just not the problem for me.
“ If someone doesn't wish to identify as disabled, that's obviously perfectly fine, but for me, disability is a really positive word. It's affirming and uplifting and I want to help other people to see it that way.”
Jessica: Going forward, I intend to speak more specifically about what life is like with ADHD and I also want to talk more about neurodiversity under the umbrella of disability. If someone doesn't wish to identify as disabled, that's obviously perfectly fine, but for me, disability is a really positive word. It's affirming and uplifting and I want to help other people to see it that way.
I also think there’s a real benefit to sharing your experiences online. There are alot of things you might not even realize affect ADHD. It’s like an iceberg. People see the commonly known parts like hyperactivity, but at the bottom, underwater are the messier things that you don’t necessarily tend to think about like having a bad memory when it comes to eating, etc. I think the real benefit of the internet is that we're able to talk to other people who we wouldn't in our day-to-day lives and share our lived experiences.
Jessica: Firstly, you don't need to have all of the fancy equipment. You can start filming on your phone. Actually, phones have really good audio recording, sometimes better than the kind of lower level cameras that you can get just FYI.
Secondly, don’t feel like you have to box yourself in. People often think they have to try and appeal to as many people as possible when they're first starting out and it's really not the case. The internet is such a big place. We are all so diverse, and often what people are looking for online is the representation that they are not finding in traditional media, on television, in films, in other spaces. So be yourself, be your niche, really just be true to who you are and your people will find you. Don't try to appeal to anyone else and smooth down your edges!
Images taken by photographer, Kitty Wheeler-Shaw.