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How Covid-19 has turned the world upside down for NI people living with sight loss

Two thirds of blind and partially sighted people say they feel less independent than before lockdown, according to RNIB NI. Linda Stewart hears more

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TV triumph: Andrea Begley

TV triumph: Andrea Begley

Begley with Danny O’Donoghue and Holly Willoughby after winning The Voice

Begley with Danny O’Donoghue and Holly Willoughby after winning The Voice

PA

Close bond: Max Boriskina with mum Jelena

Close bond: Max Boriskina with mum Jelena

Freddie Parkinson

The pair with his brother, Micky, dad Dennis and dog Leena

The pair with his brother, Micky, dad Dennis and dog Leena

Freddie Parkinson

With his sister Louise and mum Therese

With his sister Louise and mum Therese

Freddie Parkinson

TV triumph: Andrea Begley

Chairperson of RNIB NI, Andrea Begley (33), a civil servant and musician who won The Voice UK in 2013, is living with her mum, Ann, and dad, Kieran, during lockdown. She has two younger sisters.

Andrea developed juvenile rheumatoid arthritis (JRA) at the age of three and developed an eye infection which resulted in glaucoma. She has now lost most of her vision.

"One of the consequences of JRA is that it can cause infection in your eyes. I racked up 23 operations on them over the years," she says.

"Day to day, I would use a white cane to get around and I can't read print any more. I use a lot of speech technology, like phones and computers, that enable me to do day-to-day tasks."

Andrea recently joined other musicians from Northern Ireland in recording a song to thank the NHS.

"In my childhood, I spent a lot of time in hospital. I think as a child you don't really understand a lot about what's going on. I knew things weren't right, because I was always in and out of hospital and having operations," she says.

"Gradually I went from being able to read books to getting them enlarged. As I got into my teenage years, I had more and more loss of vision. As the years progressed and my vision got worse, the more difficult things became and the adaptations had to increase all the time.

"Enlarged print worked at the start, but later someone had to read to me or I had to use speech technology."

Andrea says she found it socially challenging as well and didn't want to use a cane.

"Particularly in my teenage years, you don't really want to be upfront about things like that. You want to be able to say you can do things the same as your peers," she says. "For a long time I was really reluctant to use a cane as I didn't want to be labelled as a blind person, but then it got to the point where I was walking into walls and things.

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Begley with Danny O’Donoghue and Holly Willoughby after winning The Voice

Begley with Danny O’Donoghue and Holly Willoughby after winning The Voice

PA

Begley with Danny O’Donoghue and Holly Willoughby after winning The Voice

"I suppose people describe sight loss as a bit of a grieving process - you've got to accept you need certain changes made and things to be done. The world is not built for people like us - it's built for sighted people and there still are a lot of barriers that you have to make your way around."

Andrea says that one of the biggest things that hit home was when her friends reached an age where they were learning to drive.

"That really did, and still does very much, limit my independence. It's something I've learned to live with, but when you don't have the choice it makes it that bit harder," she explains.

"Looking back now, it was difficult for me to vocalise how much of an impact the sight loss was having on me. On one hand, you want to pretend your vision is better than what it is - as a child you didn't understand the real impact of what was happening. As a teenager you are a bit socially awkward anyway and it took a long time to accept that unless you are upfront with people and comfortable in your own skin then other people are afraid often of offending you and as a child, you don't have the capacity to say 'It's just my eyes don't work very well - I need a wee bit of help'. Even if it's just for other kids and teenagers to understand why you couldn't take part in something like team games."

Andrea says music was a natural escape mechanism: "With singing you don't need any particular technology or equipment to do it."

"In terms of getting out there and doing gigs, I'm very much reliant on my parents or other musicians to give me a lift, and you don't have as great an ability to network as you have when you are sighted."

She admits she hasn't been out much during lockdown.

"I'm very hesitant about going back to normal life and a lot of that is down to the fact that I just don't feel safe. I moved in with my parents during lockdown and I am still here," she says.

Speaking as the RNIB has launched its World Upside Down campaign, Andrea adds: "This is a particularly difficult time for blind and partially sighted people like me who are used to navigating a world not designed with us in mind, but social distancing has really turned our world upside down. A lot of the strategies and tools we use to get around safely - like being guided - are not allowed under current rules, and many have been left stranded.

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Andrea with her country star aunt Philomena

Andrea with her country star aunt Philomena

Andrea with her country star aunt Philomena

"We've heard from many people who are incredibly anxious about how to manage the situation and we're concerned that this will have a real impact on people's quality of life. The 'new normal' risks causing a double lockdown for people with sight loss.

"We're asking the general public to help us safely social distance whilst getting on with life. By being aware of the challenges we might face, and simply asking if assistance is needed, you can help us keep our independence and stay safe.

"We also want the Government and businesses to take action, so that measures designed to protect us are inclusive to everyone, not just to those who can see them."

Andrea says that many social distancing measures are challenging for those who are blind or partically sighted.

"I don't think any thought has been given at all on the impact social distancing measures will have on people like me," she says. "You are talking about signage, markers on the floor, maybe screens. Even if I went into a shop and needed someone to guide me, that is quite close personal contact.

"I've a lot of concerns about going back to life before Covid. While I am not saying I won't go out a bit more, I'll definitely be doing it with family members.

"I went with my mum to Forestside and the shops had hand sanitiser stations, but if she hadn't been there with me I wouldn't know where they were."

Andrea adds that some visually impaired people have got into trouble in shops because they didn't have a cane or dog and others didn't realise they had a disability.

"I've heard of people being shouted at because they didn't know they weren't keeping two metres away from others," she says.

Hairdresser Jelena Boriskina (30), from Newry, is married to warehouse manager Dennis (31), and has two children, Micky (6) and Max (10), who is visually impaired.

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Close bond: Max Boriskina with mum Jelena

Close bond: Max Boriskina with mum Jelena

Freddie Parkinson

Close bond: Max Boriskina with mum Jelena

She discovered she was the carrier of a rare gene called RS1 when tests were carried out on Max at the age of six to find out why his eyesight was deteriorating.

"When the tests came back, they said he had X-linked retinoschisis and there is no cure - he will have it for life," she says.

"It's genetic and I am the carrier. I was blaming myself for a long time for having it, but if I hadn't had children, I wouldn't have known about it.

"Max doesn't see in 3D and he gets mixed up with the colours pink and purple - he's a bit colour blind. If he takes a bike outside, he's struggling with kerbs. His overall vision is quite poor and sometimes he will bump into people in the shopping centre.

"I can see a person from 20 metres away, but he would only see a person from two metres away. He's 10 and he's learned to deal with it.

"Hopefully he's not going to be completely blind, but he will be visually impaired for the rest of his life because there is no cure."

At times, his impairment would have caused problems for Max in the playground when he accidentally bumped into other boys and they thought it was deliberate.

"He's big and strong, and sometimes they would push him back. He had a bad time a few years ago, but it's getting better now - he's very sociable and friendly," Jelena says.

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The pair with his brother, Micky, dad Dennis and dog Leena

The pair with his brother, Micky, dad Dennis and dog Leena

Freddie Parkinson

The pair with his brother, Micky, dad Dennis and dog Leena

"However, he's not allowed to take part in contact sports - his dad is a boxer and Dennis isn't even able to take Max to box with him."

Lockdown has brought its own challenges, including the difficulties of accessing his schoolwork in large print.

"He gets homework, but it's usually on A4 paper and he's always needed it on A3," his mum says.

And as lockdown developed, the schoolwork began coming via the school website.

"I was magnifying everything and it took forever," Jelena says. "I ended up buying him his own things, but I was sitting with him and rewriting everything. He loves reading and I wanted to get him Harry Potter in large print; it cost £250 for the book in large font."

Max is due to sit the transfer tests later this year and Jelena is concerned because he will need access to tests in large print.

"In my opinion, it's a simple thing - but it has to go through the social worker and the visual support teacher and it's a waiting game all the time."

Jelena also keeps a close eye on Max's medication, which is ordered to come from England.

"Max takes special medication twice a day, but he doesn't like the tablets so it has to be in liquid form," she says.

"We've been ordering the prescription over the phone and it has to be ordered from England and sent back to us."

Jelena has been wary about taking him into social situations in lockdown.

"I'm not even asking him to go to the shop - I'm trying not to expose the children to social contact, but I would say he'll be all right once everything goes back to normal," she says.

The RNIB has launched the World Upside Down campaign, calling for people to think about the challenges blind and partially sighted people might face and make small changes to keep everyone safe. To find out more, visit www.rnib.org.uk/campaigning/social-distancing

Tiernan Devine (16), who has four sisters and one brother, lives with his mum Therese (47) and sister Louise (17) in Turf Lodge in Belfast. As a child he was partially sighted, but his eyesight has completely gone now.

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Battling on: Tiernan Devine at home in Belfast

Battling on: Tiernan Devine at home in Belfast

Freddie Parkinson

Battling on: Tiernan Devine at home in Belfast

Therese explains: "He was born at 24 weeks and he had complications. When he was wee, he had no retina in his left eye but was partially sighted in the right eye, until recently.

"Doctors said his problems were due to being on a ventilator so young and for so long. When he was 10, we had to bring him over to the John Radcliffe Hospital in Oxford. He had to have a procedure, known as scleral buckling, to treat his retinopathy, but it was unsuccessful.

"He used to be able to see bright colours like the sun, but now he's just completely blind."

Therese says Tiernan has been receiving cane training from RNIB NI since childhood, but didn't get much support elsewhere.

"People didn't tell you what you were going to be in for or what to look out for. There was no support, going back 10 years or even longer," she says. "It was like throwing him in the deep end - he was treated just like one of the other kids. There was no special treatment and you just had to get on with it.

"He got teased a lot because of his blindness. His sisters were very overprotective of him."

Despite the challenges life has thrown at him, Tiernan still liked to get out and about as a child.

"We live in a cul de sac, where there is a field, and he had every part of the field mapped out - he knew where everything was," Therese says.

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With his sister Louise and mum Therese

With his sister Louise and mum Therese

Freddie Parkinson

With his sister Louise and mum Therese

Tiernan says that as a child he was aware that his health conditions made him different. "I would say to the people that aren't blind - don't judge a book by its cover, because there are more chapters in a book than you'll ever know. And to blind people, I would say don't give up and don't let people tell you what you can and can't do," he says.

At school, he is doing maths and science, and loves singing and playing guitar: "When I'm older I want to be a professional guitar player," he says.

Tiernan has spoken out on blindness issues and appeared on TV a number of times.

"I did a video for Stephen Nolan about how blind people and autistic people can work together," he says.

Normally he would be out and about with his sister Louise, but isn't leaving the house much during lockdown.

"It's different now, but I would only go out with my mum or sister if they're going round to the shop - other than that, I don't really go out," Tiernan says.

Belfast Telegraph