Jessica Kellgren-Fozard started to lose her hearing aged 15, she has a genetic disability (Hereditary Neuropathy with Liability to Pressure Palsies) which contributes to deafness, among other effects on her nerves, muscles, ligaments and organs.
What’s your first memory of your hearing deteriorating?
Since my hearing deterioration was so gradual I didn’t notice for a long time. My parents and teachers thought I was merely losing my ability to concentrate and I felt I had to agree with them- although it was confusing to me since I could happily read a book cover-to-cover in one afternoon! I do remember very clearly sitting in one mock GCSE French ‘listening exam’ and looking around the room in utter shock that other people could understand the warbling rubbish coming out of the radio. But my teachers just told me I was really bad at French!
How did it make you feel and how did it affect your everyday life?
Before my hearing loss was diagnosed I definitely felt a knock to my confidence. The world seemed very confusing and I couldn’t understand why: I’d jump when my friends ‘suddenly’ appeared because I hadn’t heard them coming closer and I cried many times over why lessons were suddenly so difficult to grasp when I’d been an A student before. I would come out of a classroom and be startled to realise that I hadn’t actually understood one word of what had been going on. I thought my brain was letting me down and the adults were right: I was becoming a ‘lazy teenager’.
You were only 15, do you think it was harder to adapt having previously heard the world around you?
Possibly because my hearing loss was so gradual (over a period of three years until it plateaued out) I don’t find I greatly miss being able to hear or that I get sad about it. In fact, having been able to hear as a child and young teenager is actually really helpful! Since I know what things are meant to sound like I can just fill in the blanks. If I come across a new word or name I’ll have someone break it down into chunks that rhyme with words I already know so that I can then say it correctly!
Did you encounter any discrimination as you grew up?
I definitely encountered a lot of discrimination growing up as a person with an undiagnosed invisible disability, which in turn caused my deafness. I think it was very easy for people to look at me and think I was lazy or not trying hard when actually I was struggling and pushing myself the most.
As you’ve got older, has anything been harder or easier?
I was finally diagnosed with a genetic disability at the age of 17 and it was honestly one of the best things that has ever happened to me! All those years of struggling finally had a name and I could finally access the help I really needed. I now have a sign language interpreter for events and meetings and I can set my own goals based on what I know is achievable. I have a carer who is with me in the weekdays and my wife is always on hand the rest of the time. I wish I could have had the help as a teenager that I have now.
Why did you start your YouTube channel and what was the initial response?
I’ve had a YouTube channel since 2011 but didn’t really do anything with it until two years ago. I was working for a local TV station and received a message saying I was a ‘disgrace’ for calling myself disabled when I wasn’t visibly so! Clearly invisible disabilities don’t get enough exposure for people to think they don’t even exist. It felt like such a similar sentiment to what I had experienced earlier in my life that I didn’t get upset, I just felt motivated instead! I left my job to focus on YouTube and other awareness-raising platforms.
What’s your aim for your channel and is there anything you’d like to cover on it in the future?
My aim is always to bring together people facing similar issues but also educate able-bodied people in a fun and friendly way.
What are your YouTube community like? Have you found support or empathy from them?
I have a really great YouTube community! They are incredibly supportive and understanding of my need to miss a scheduled upload or take a few days just to be ill.
You recently did a video on queer sign language, why was this important to you?
As a deaf, queer person I thought it was so important to show the crossover between the deaf community and the LGBTQ+ community, both in terms of support from one to the other and also because too often deaf or disabled people are desexed and infantilised. We can have full and rich romantic lives as well!