How we have battled back from adversity and triumphed
To mark International Day of People with Disabilities this Thursday, two young people talk to Stephanie Bell about how they are achieving their dreams
‘Education is crucial to removing the barriers’
There is very little James Douglas has not been able to overcome in his life despite living with severely restricted eyesight.
But while the Londonderry teenager is determined to live his life to the full, it hasn’t been without challenges, most of which he feels could have been avoided if society was better equipped to understand how to include disabled people.
James (17) is a pupil of Lumen Christi College where he is studying four A levels in physics, biology, chemistry and maths with the hope of going on to specialise in astrophysics.
He lives with reduced vision due to oculocutaneous albinism, a rare disorder characterised by a reduction or complete lack of melanin pigment in the skin, hair and eyes.
James says that simply trying to get others to understand how he sees the world has been one of his biggest challenges growing up.
“My eyes are unfocused,” he explains. “The best way I can describe it is that it would be like someone looking through the lens of a camera that isn’t focused.
“When people asked me what I can see it has been difficult to answer. I don’t know what normal vision is so it is a bit like trying to describe a colour to a colourblind person.
“I came up with the unfocused camera analogy and that has made a big difference.
“I think communication by professionals should be more child friendly as it would have made life easier for me if someone could have helped me to be able to tell people sooner what my vision was like.”
Taking part in sports and activities in youth groups was more challenging for James because of his vision and again, he feels that the issues he faced could easily have been avoided.
“In sports clubs and things like that being able to articulate how I see can make all the difference,” he explains.
“It meant that when playing something like badminton, just making the shuttlecock green instead of white meant I could play or using a slow tennis ball would mean I was included instead of having to sit out.
“It is very simple but it is the difference between whether a young person with a disability is included or excluded.
“I think education is key to removing barriers because if youth workers and people in the community understand, then they can make the adaptations.
“I have found that youth leaders do their best to help but if they have never been on a course to train in what amendments they need to make then they won’t know what needs to change. I think the willingness is there but people just don’t understand how to help.”
James credits his family — parents Judith and David and older sisters Sara (23) and Rebecca (21) — with supporting him to make the most of his life and the opportunities which many of his peers take for granted.
He has also found the support of local charities helpful, especially the Royal National Institute for the Blind.
He recently took part in their ‘Our Futures’ project to try and help further develop ways that young people and children with sight loss can be included in society.
He admits that as he has grown up, he has felt the impact of his disability more, watching his friends do things that he cannot.
“A lot of my friends are learning to drive and I can’t — I do feel it a bit. It is a missed opportunity,” he says.
“I can’t go on ski trips or do the Duke of Edinburgh Awards. I went on a geography trip with school to Iceland and my dad came with me to ensure I didn’t trip and fall. It was good fun having him there but kids who didn’t know me found it a bit weird.
“I was safe which the most important thing was, but things like that make you feel different and a bit isolated.”
James is planning to study astrophysics at university and even though he knows looking through a telescope will be a challenge, he is determined not to let it stop him from realising his dream.
He adds: “I feel it is very important to build life skills for living independently. In school, I rely on my classroom assistant to help with things, but when I move on to university I’ll need to prepare to do things for myself, both in the classroom and wherever I end up living.
“I haven’t faced a problem yet that with the help of my family we couldn’t solve.”
‘I have learnt to take things in my stride’
Andrew Herd (28) from Belfast has Asperger’s Syndrome which is a condition on the autism spectrum.
For Andrew, the biggest challenge he faces in his day to day life is change to his routine which has made living through the past few months of the pandemic especially difficult for him.
He is a client with the social enterprise Now Group through which he has found satisfaction working on a placement with the Ulster Historical Society.
He also participates in Now’s social group Kidnap Wednesday which has continued to meet online during the pandemic.
A keen learner, he went on to gain numerous qualifications in further education and is proud of what he has achieved through administrative placements with Now.
“My work at the Ulster Historical Society has stopped because of the pandemic,” Andrew says.
“I do data entry for the Society, putting their old books onto the internet. I like to keep busy. When I left Park School in Belfast I went to Belfast Met and studied one year of IT. Then in 2012 I did a business course and for two years after that a travel and tourism course.
“I am a very able guy — if they tell me what to do I can do it to the best of my ability.”
Andrew is also an ambassador for the Now Group, helping to promote its work at events around the country.
He has a positive attitude to his condition which has helped him to cope during the Covid pandemic when much of his normal routine has been suspended.
‘I don’t know what normal vision is like’
“When I was three years old my mum took me to the doctor and she was told that I had Asperger’s Syndrome,” he explains.
“Many famous people have Asperger’s and you can see how successful they turned out.
“The only thing I know about my disability is that I don’t like change to my routine. But once it happens you just have to role with it.
“At the start of the pandemic it was like everything had been taken away from me and it was a big change. It was like a bitter pill to swallow but it had to be done.
“I like going out for a walk especially during these times when everything is up in the air and it is all doom and gloom. Walking is beneficial as it helps me to keep my head clear so that I can deal with life.
“I have had to adapt to doing Kidnap Wednesday through Zoom and that has been a big help in taking my mind off the gloom.
“I made my first Victoria sponge cake in my mum’s kitchen through the group.
“I think as I have grown older I have learnt to take things in my stride and overcome things. Every day is a school day and you pick up new things,” he adds.