WHEN Eleanor Mclachlan was born, her mum Annabel was told by doctors that a child like her is born in Jersey only once every 30 years.
Leaving the Hospital sheltering her new baby under a blanket to protect her from the sun, Annabel was scared and uncertain about how she was going to support her youngest daughter.
No dedicated service on the Island existed to advise her on what to do.
Born with white hair, pale skin, and eyes that appear red in the sun, Eleanor has the most severe type of albinism, a rare genetic disorder that affects one in 17,000 people in the UK.
In pure numbers terms, that likely means fewer than ten people on the Island have it. Eleanor believes she is the only person in her age group in Jersey with albinism.
It means Eleanor has various conditions affecting her eyes, such as astigmatism and nystagmus. She is also extremely sensitive to bright light and must wear factor 100 suncream to protect her pigment-less skin from the sun’s rays.
Deciding to share her experiences publicly for the first time, the 16-year-old sat down with the JEP to discuss what it’s like living with such a rare condition, coupled with being one of the youngest people to benefit from local sight loss charity EYECAN.
Wanting to raise awareness about albinism and shake the stigma associated with a young person with a disability, the Highlands student said after a long time of denying her albinism she feels it’s time to educate others to benefit herself.
“I’m just kind of owning it now,” she said.
But it has been a tricky road for her and her family trying to get to this point and understand what albinism means and what adjustments Eleanor needs to live life to the full.
Her mum Annabel described what it was like at first.
“We had to learn a lot from the very beginning,” Annabel explained. “When she was born I didn’t really have anyone to speak to so just had to read books that were about raising children with albinism.”
With Eleanor unable to talk as a baby, her mother had to cover her pram in UV blankets, shade her eyes from bright lights in supermarkets to stop her crying in pain and deal with pointing and staring from passers-by.
“It was all a really big change for us,” Annabel added. “At the start I didn’t know where to turn.”
Having no choice but to contact what was the Jersey Blind Society at the time, which was later re-named as EYECAN, Eleanor’s family was desperate for understanding.
The charity was able to support Eleanor by providing specialised equipment such as magnified mirrors, a mobility cane, and iPads for school. The charity also helped install blackout blinds all over her family home.
“I came here for help and they were brilliant,” Annabel added.
Eleanor said that the charity was one of the only places that understood her.
“Whenever I come here [to EYECAN], I feel very supported and understood. They get it here [having albinism],” she said.
In comparison, when using public buildings such as the Hospital, Airport, or even at school, she would constantly have to repeat herself about what changes need to be made – and the message does not always get through.
“Some people just won’t get it at first,” Eleanor said. “I don’t mind explaining but sometimes if they’re not listening, it can be really irritating.”
Moving to Highlands College this September was her latest challenge and Eleanor, with the help of EYECAN, communicated what changes needed to be made to support her in the new environment.
“I need to get to know a place,” Eleanor explained.
After touring the campus with the help of EYECAN, Annabel noticed that white strips were needed on the stair edges as Eleanor cannot perceive when a step ascends or descends.
They also asked for blinds to be installed in the communal hallways and she also has her own dark room to go to if she needs.
More than physical challenges, Eleanor said joining a new course brought other obstacles, such as making friends.
As she is unable to make direct eye contact or see their faces at a distance, Eleanor said at first she was unable to talk to her new course mates.
“It was really difficult because I can’t see people’s faces unless they’re up close. So it was very difficult to memorise names or put names to faces and I was trying to explain that, but it’s very difficult for a sighted person to understand,” Eleanor explained.
Deciding to take the matter into her own hands, a charity worker from EYECAN presented a talk with Eleanor in front of her class about albinism and what it means.
“After I did that, people were starting to talk to me and I think it was beneficial for everyone,” Eleanor said.
“Now, when I come in the class and the seating is different, someone will point it out to me and things like that.”
She said feeling the difference makes her feel “really happy”.
“People are actually thinking about me for a change,” Eleanor said.
She added that an increase in general awareness about living with sight loss or supporting people with vision impairments helped give her the confidence to speak more openly about her own experience.
“I’ve been seeing lots of people online share their stories and raise awareness about their conditions so I thought I should give it a go too,” Eleanor said.
Annabel added: “[Eleanor] amazes us all the time as parents. We are so proud of her.”
But for a young person with a rare condition, getting the message through to others remains a challenge as people make assumptions that disability is linked with wheelchairs or old age.
Annabel said when parking in disabled spaces with Eleanor, members of the public are quick to confront them, even though they are blue badge holders.
Equally, Eleanor said she’s experienced backlash as a child when sitting on the disability seats on the bus.
She said having to defend her disability has made her want to deny that she needs support.
“I just didn’t feel like I was disabled enough,” Eleanor said.
“It wasn’t great that I was denying it because then I missed out on opportunities like trying to apply for a guide dog, or getting equipment that would actually help me,” she continued.
“I didn’t want people to see me as blind because people make assumptions. Using things like my cane in public also made me feel vulnerable and I don’t like that.”
However, as she has started to advocate for herself more and felt the improvements, Eleanor is on a journey to accept herself and the rare condition she was born with.
Now in the “very exciting” process of applying for a guide dog, she hopes her story will not only raise awareness about albinism but encourage other young people with disabilities to speak up for themselves when no one else will.
Currently, Eleanor and her family are working to get International Albinism Day recognised in Jersey for the first time next year on 13 June.
