Having Faith and Living with Neurofibromatosis
British actor, presenter and campaigner, Adam Pearson was diagnosed with neurofibromatosis from age five. In this interview, he shares how his Christian faith has helped him through the journey.
Adam Pearson has presented several BBC documentaries and plays a main character in the film Under The Skin, alongside Scarlett Johansson. Diagnosed with neurofibromatosis type I, a genetic disorder that causes tumors to form on nerve tissue, he passionately campaigns to raise awareness of this disability. Before taking to the big screens, Adam attended the University of Brighton and Emmanuel Church, which happened to be the same university and church I attended whilst living in Brighton. I reached out to Adam for an interview, to which he generously agreed. This is the interview below:
Where is your hometown?
Croydon, in South London. I moved to Brighton to study at Brighton University and stuck around for three years.
What did you study at Brighton Uni?
I studied Business Management. I enjoyed it. I think it’s important to have a somewhat vocational degree, like TV was always plan A for me, so plan B had to be rather solid and business seemed like a natural fit because I done well at it in GCSE and A Level.
You also attended Emmanuel Church whilst you were a student. What was your experience there?
I really liked it there. Although I didn’t come here in my first year, my advice to Christians coming to uni would be to find a church straight away, don’t try to become popular or well liked in your halls because popularity is a really crappy foundation to start building on. I went abit nuts in my first year. I suppose I thought that being a Christian was all about not descending people, so when you drink or the joints were going round, I thought saying no would upset people, and I thought that’s not what Jesus would do, when in fact, it is exactly what Jesus would've done. So in retrospect, I probably should've started coming to Emmanuel in my first year and of all the guys of Brighton Christian Union and Sussex Christian Union recommended here and they had the free bus service, which stopped outside my halls of residence. So the kind of lazy man in me, thought it was a safe bet. And I instantly connected with it. Really good worship, really good preaching, really nice people. They knew what they were doing. I was also the administrator for Brighton University Christian Union. I had a background in event managing because all my friends were in bands, so I used to do all their social networking and stuff for them.
What was it like growing up with Neurofibromatosis (Nf)?
So there's the medical side of things. I got diagnosed when I was 5 years old in 1990 and medicine in the NHS at that time wasn’t what it is now. They didn’t isolate the gene for NF type 1 until the 90s, I was 'ahead of the curb,' so to speak. Even now I spend a lot of time in and out of hospitals keeping a tag on things, etc. But when I was younger it was even more so because we were trying to get to know this 'demon' we were wrestling at the time. Primary school was alright, but when you hit secondary school, this weird social pecking order kicks in- it’s almost Darwinian in its methodology. The whole bullying thing started. I was stressed out with possible appointments and trying to get my education sorted out. When you're 14/15, your hormones are running rampant and I suppose the bullying compounded that slightly. I coped with that terribly. I got really jetted up about the whole thing. I was smarter and wittier than the kids who were bullying me. So they'd say something and within like half a second I'd reply back and then you become the instigator. Education is very weird. And the disability discriminatory Act was quite a new thing so a lot of people didn’t know how to use it. People would question whether this was discrimination or is it just 'boys being boys,' whatever that means.
What is your story of becoming a Christian?
I'm from a family of Atheists and Agnostics but became a Christian when I was rather young. I was about eight years old and in the Easter holiday, there was a club going on at a church. You know table tennis, penny sweets, happy days. And I was not a smart eight-year-old, so neither me nor my brother, who went with me, had put two and two together and thought club, church, Easter, they might mention Jesus like once and so it all started happening. At that point, you either walk out or stay and listen. So I stayed and listened and started going to the Sunday school that the church had there. I originally just went to hang out with two of my very good friends from primary school, who I'm still really good friends with now, and also just to ask difficult questions in a bid to irritate the staff for my own amusement. But the more awkward and difficult my questions got, the more answers they had and the really weird thing about knowledge is, once you tag it, you have to do something with it and you reach this point where you have to make a decision where you either have to say yes or no. You can't plead blind ignorance anymore. And I remember that, it made more sense to say yes than no.
How has your faith impacted your journey with Neurofibromatosis (Nf)?
I think it gives you purpose. I think God never gives you anything more than what you can handle- and it sounds ridiculous to say but- I think it’s made me a better person. It’s made me more understanding and more compassionate and it’s given me opportunities that without my disability I wouldn’t have had. If I was just your white, middle class, able-bodied male, my documentaries wouldn't work. Whereas if I do it, it’s all of a sudden interesting and noteworthy.
Are there any difficulties have you faced through your faith journey?
I think everyone- disability or no disability- has reached that moment where they are just so stressed and they think why me and they shout something at the sky. I think that’s just a perfectly natural part of the Christian journey. I don’t think its exclusive to me as a disabled person, its more other people who have problems with it- 'Oh how can you believe in God because of what's happened to you' and its like, well how can I not believe in God because of what's happened to me? In a world nominated broadcaster, whose done films, TV and Radio. On paper, me on my own could not pull that off. I'd be arrogant to think that I've gotten this far just by myself.
You're doing some great work with helping to remove the stigma that is often attached to the disabled community, such as making documentaries with the BBC. Are there any other projects you're working on?
I do a lot of public speaking, like doing the Tedx Brighton event and that’s always been the goal, to raise awareness of disabilities and campaign for equality. Being famous was never part of the plan for me. Because I quite liked my privacy back in the day, when I had it. And now in a world that is obsessed with the media and everyone's accessible on Twitter, you kind of forego that for the greater good, I suppose. But I think, a lot of people don’t know what God wants them to do and in those instances, it’s important to nail three questions down: What do you like, what are you good at and what bothers you? And if you find your misery, you'll find your ministry. And I was and still am so frustrated at the way disability is dealt with in the media. It tends to fall into shorthand cliché's and it’s a lot of mainly white men in a room, talking about how they think disabled people are and making programs based off that. So I consider myself the voice of reason in my industry. Even from an off-camera point of view, I'm heavily involved in things like The Undateables on Channel Four, by making sure they nail the language and they don’t use tropes like 'suppers wrong' or 'tragically disfigured' or any of those grandioso nouns that they use.
What were your aspirations when you were younger?
I didn’t really have any. I was never really that kid. I think when I was three I wanted to be a train—not a train driver, an actual train. This is the academic stock I come from. And then I think at one point I wanted to be a pro-wrestler and that’s still very much the case. If they called me tomorrow, I'd probably do it. I think I wanted to work in advertising then it quickly worked out that it’s a cut-throat environment. So I sort of fell into television. I applied for a job in Radio at BBC Sixt music. And whenever I make plans, God goes, 'no that isn't happening.' Like, I wanted to go uni at Bournemouth and I got into Brighton. The college I wanted to go to accepted me, all my friends were going, but I had to put two choices down and so I put the local sixth form just as a joke, then they gave me an unconditional offer. I was like 'oh my word, that took the cat amongst the pigeons'. And so, I fell into TV working in on-screen diversity, which aims to ensure that all minorities across the board are represented accurately.
What do you think of Brighton as a city?
I love it. I miss it so much. This is my first time in the New England site in five years, it feels so weird. Yeah, I remember setting up events in here when I did Impact from 2007-2008. That was after I finished uni.
What inspires you to have the positive outlook that you do in life?
I think you need to live the life you have, as oppose to mourn the one you don’t and I wish I worked this out younger. I didn’t get my head in this space until I was in college. You can get angry and moan about your situation all you want but it’s not going to change anything. So you reach this kind of Damascus road moment where you decide what you want to do, what you want to be and you be it.