‘Reflections of a First Timer’ by Gareth Brydon
As a 46-year-old man who spent a large part of my life not even knowingI had albinism and being discouraged from labelling myself as disabled in any way, I’d never contemplated attending a condition specific conference. It was only a chance meeting with Albinism Fellowship trustee Jo and member Andrew Bennett, who is also the charity’s PR advisor, at LOOKFest in July 2019 that convinced me to give it a try and I’m very glad I did. Thanks both!
Meeting other first timers on Friday evening was an invaluable introduction. Issues voiced in relation to things like diagnosis, confidence, self-esteem, and peer support would be explored more fully over the weekend and so the scene was set.
The great outdoors
Following a quiet night on Friday where I met an engineer, a librarian, and two first class honours Oxford University graduates with albinism, Saturday morning saw us forsaking the Rugby World Cup to visit the LeaGreen Outdoor Activity Centre. Once there we rode go karts, climbed thewalls of a prefabricated cave, and tackled a muddy assault course. Aside from being astounded by the agility of my peers and reminded how middle-aged and lazy I’ve become, I also realised by watching others fit them without fuss that my life long struggle with adjustable helmet fasteners was far more to do with general impatience and ineptitude than visual impairment. After a morning that passed in the blink of an eye, we arrived back at theconference centre a little bit tired and muddy but ready for the rest of the day.
Setting the picture straight
Following an afternoon of fantastic workshops on subjects including QTVI support, diagnosis and treatment and welfare benefits on Saturdayevening I had some of the most humorous, empathetic and enlightened conversations about lived experience of albinism. The challenges and joys of being a dad who can’t drive and uses a magnifier to read bedtime
stories, the importance of having a correct diagnosis and what that means in terms of heredity and future conversations with children, the difference between strawberry blond and regular blond hair, and most profoundly the innate ability of people with Nystagmus to work out when wall mounted pictures are wonky and straighten them.
All in All
Over the two days I was amazed by the people I met, stories I heard, and things I learnt. Aside from the positive atmosphere, sense of community, and warmth throughout I was also struck by the power of albinism in bringing together people from across the world in rural Derbyshire to share with one another and stand up proudly to say; ‘THIS IS ME’!I’m already looking forward to the next conference in 2021 and hope to get more involved with the Fellowship generally. Thanks to all involved for an incredible weekend!!