Sight loss won’t stop local teen Olivia

Olivia O’Kane (19) was diagnosed with albinism at birth and is now registered as severely sighted impaired. Albinism is a rare, inherited life-long condition. People with albinism do not produce sufficient melanin (pigment) and this can affect their skin, hair and eyes.

“I get asked about my vision all the time”, Olivia says.” But because I was born with albinism it’s just the ‘norm’ for me. I can see outlines and colours, but not details. I would have to be very close to an object, or touch it, to know what it was.” She added: “I’ve always relied heavily on my hearing. In fact, when I was younger, I would know when my mum had come to pick me up because I knew the sound of her car’s engine!”

Olivia is approaching the end of her first term at the University of Ulster, Magee studying Speech and Language Therapy. It’s a notoriously competitive course, with around 600 applicants for just 40 places.

She said: “I always enjoyed school, I went to St Mary’s Grammar School in Magherafelt which was wonderful, so university seemed like the next natural step. I knew I wanted to work with children with some sort of disabilities and in the field of communication, so speech and language therapy seemed like a good fit. My own experiences have taught me that communication is so important. Not having all your sight means you really need to communicate clearly to people what you need.”

“When I went into secondary school I got an iPad and that was a total game changer. I could enlarge everything, make it bold etc. It made an amazing difference. My school was so supportive and never made me feel like my sight loss was an obstacle that couldn’t be worked around.”

Olivia credits her family with her positive, ‘can do’ attitude, particularly her mum Fiona. She says: “My mum has always been my cheerleader. She encouraged me to do everything, like singing lessons and piano, and my sight loss was never a ‘get out of jail free’ card. I have to do just as many chores as my three younger brothers!”

While waiting for her A-level results to come back during the summer, Olivia and her parents went to visit the campus and meet with staff to discuss reasonable adjustments.

Olivia explained: “I think it would be fair to say there was some misgivings from the university. SLT can be quite a ‘visual’ course and I think they were concerned as to how I would be able to participate.” But Mum Fiona wasn’t deterred and she contacted RNIB for support.

RNIB Employment Officer Clare Dixon worked up Olivia’s case and accompanied her and her parents to another meeting with the course director. She proposed a number of possible solutions including using technology, in this case a distance viewer camera, to help Olivia see people’s faces from further away. She also offered visual awareness training to the faculty to help staff understand more about sight loss.

Clare said: “It was a real pleasure to support Olivia with getting started on her university course. She is so capable and determined and I have no doubt she will be an amazing speech and language therapist in three years time!”

She added: “People with sight loss may be worried that they will be unable to find work or stay in their current job but there is help and support available. Through our job retention programme, Workable NI, we provide tailored support to blind and partially sighted employees who are facing any difficulties in work due to their sight. Depending on individuals’ needs, options include IT training, advocacy and mentoring support.”

RNIB also offers pre-employment support help people gain the experience and confidence they need to secure employment. For example, weekly one-to-one support focusing on job searching, applications and CV development, as well as ensuring customers are aware of reasonable adjustments and other supports that will help them once they enter employment. The charity also provides advice and training to employers.

Reflecting on the past few weeks, Olivia admits it’s been a time of big change. “It was a bit scary going to a new place where I didn’t know anyone,” she said. “I’ve always had mum and dad to help me but now I’ve realised I have to use my own voice and advocate for myself.

“It helps that my support worker from school has come with me to uni which is lovely because she knows me so well. I can’t believe the first term is nearly done!” She added: “If I had one piece of advice to share it’s to not listen to the stereotypes about sight loss. Everyone’s experience is so different so it’s important to stay determined and just believe in yourself.”

Mum Fiona said: ‘I’m so proud of everything that Olivia has achieved. When she was little, all we would hear was what she wouldn’t be able to do. I remember one doctor saying ‘well she’ll never ride a bike’ and that really stuck with me.

“Time and time again she proves people wrong. I’m delighted that she’s settling in so well at university and we can’t thank RNIB, and especially Clare, for all their help, encouragement and support to get her there.”

The RNIB Employment team can be contacted via email on [email protected] or via the RNIB helpline on 0303 123 9999. For more information, visit www.rnib.org.uk/nations/northern-ireland/employment-services.