In recognition of Albinism Awareness Day on 13th June, we spoke to Lucy of @everyone_loves_lijah to discuss her journey as a mother to eight-year-old Elijah and her personal experience of albinism, from discovery and diagnosis of her child to educating society on the condition.
A child model in many advertising campaigns, Elijah and his parents are keen to erase common prejudice and myth around albinism. Using their modelling contracts and social media platforms to raise awareness, the family hopes to instil confidence and pride in others with the same condition.
Please could you tell us about your personal experience with albinism?
Until we welcomed Elijah into the world, an angry little baby with a shock of gingery, blonde hair, I only knew what the mainstream media had portrayed of people with albinism – the white hair, the pink eyes, the ‘creepy, weird’ persona. I first heard the word ‘albino’ (incidentally, many people with albinism find this term offensive and do not like it to be used) when Elijah was nine weeks old and I took him for a routine eye test. The doctor asked me if I had noticed his eyes wobbling which I hadn’t (I have since found out that this is called nystagmus and nearly all people with albinism will have this). I had, however, noticed that he screamed an awful lot and was much more unsettled than other babies, especially when out in the sunshine or under bright lights when inside. The doctor brought in other professionals who questioned Elijah’s dad and I, announcing that because Dad was Nigerian and Elijah was so ‘white’ he was probably ‘an albino’ and possibly blind. I remember my first response – ‘But he doesn’t have pink eyes’, you see I only knew the myths and stories. In that moment I couldn’t see a positive future.
What followed was months of back-and-forth appointments, whereby professionals established the diagnosis and tried to gauge the level of his vision. As a new parent this was a very difficult time, imagining the worst, reading all sorts of misinformation and receiving very little support.
The greatest factor in quelling my fears however was Elijah himself. As he grew, he became more and more fiercely independent, a daredevil that would take on any physical challenge the world presented. Over time it has become clear that, although he does have a moderate visual impairment (currently he would not be able to drive legally here in the UK), he has made adaptations himself for this – holding things closer to read, making sure he wears his sunglasses when out in bright sunshine or light and relying on other cues that are not visual.
Elijah has appeared in many incredible advertising campaigns, he is beautiful. Has he always been a confident child?
Whilst Elijah thrived physically, this was not the case socially. Elijah has always stood out from the crowd. His bright, blonde curls instantly make him recognisable and his white skin and blue eyes stand in contrast to his obvious African heritage. People have always stared, whispered, pointed, wanted to talk to Elijah or touch his hair. Elijah has always taken a lot of the energy from a room and directed it towards himself. When he was younger, he did not welcome this attention. He did not want to be noticed or to talk to people. He would cry about having to go out, he would growl at people, he would openly tell them ‘I don’t like you’. As a mother, the most heartbreaking thing was my little four-year-old son breaking down in a shopping centre in tears, asking me why everyone had to look at him and begging to be ‘like everyone else’. I had to find a way to turn all of the attention that Elijah generated into something positive for him, to help him understand that whilst he did indeed look ‘different’, whilst he stood out from the crowd, that this was a privileged position to be in and, in fact, when people are looking they are already half listening. He had to decide on the message he wanted to give.
Someone had previously mentioned modelling to me and, although it was something with which I had no experience, I began to do my research and eventually Elijah was signed with an agency and began his modelling journey. He first worked for a big high street brand. An agency change later, Elijah is now with Zebedee Talent where he has gone on to work for many famous brands, including a recent overseas trip to shoot a big sports campaign that will be released this summer.
Long gone is the little boy who worried about ‘being like everyone else’. In his place is a confident and engaging boy who is able to navigate himself through all that life brings with self-esteem and confidence - the two factors that I truly believe are the key to the door of life.
In the hope of promoting awareness and inclusion this Albinism Awareness Day, what would you like others to know about albinism?
I would like people to know that albinism is not the myths. Albinism is not the stories of magic and mystery. Albinism is not a disease that you can catch or a punishment for previous wrongdoings. I would like people to know that albinism is simply a condition due to the particular gene pattern the person possesses. A condition that both parents must carry. A condition that yes, whilst it carries issues with vision and difficulties in tolerating the sun, it is not, when managed properly, a life sentence of non-achievement and limited success. Albinism is just an ‘is’. Elijah is a person with albinism, but he is also a brilliant student, a successful gymnast and is a little boy with the potential to do anything that he wishes in life.
Are there any pieces of advice that you feel would help other parents of a child with albinism?
Don’t be scared. Don’t lie to your child. Don’t tell them that they are not different. Celebrate their differences, teach them to be proud of who they are. Teach them to support and encourage everyone to find the difference in themselves and to welcome this. Teach them that they are indeed special but also that everyone else is special in their own right too. Teach them to advocate for themselves, to have confidence and a voice. Then, most of all, enjoy the ride – just like any other parent, because parenting is a ride and one on which you will make mistakes and ask questions that you never thought you would. A ride on which your child will probably teach you more than you ever thought they would.
All images by @everyone_loves_lijah
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