Social-distancing with sight loss: living in the dark in a Covid-19 world

Social-distancing with sight loss: living in the dark in a Covid-19 world
Maeve Doyle, second from left, with her dad, John, her mum, Deirdre and her younger sister, Eimear.

Social distancing is a tall order for 17-year-old Maeve Doyle. When she’s out for a walk with her dad, John, and their German shepherd, Ború, the Lucan teen can’t tell if she’s six feet away from people.

Maeve has Stargardt disease – inherited retinal degeneration that causes progressive vision loss due to damage to the central region of the retina. The condition runs in her family and her 21-year-old brother, Seán, has it too.

“I have very poor depth perception, which means I don’t know how far away people are. I’ve barely left the house since the lockdown started. I don’t want to go out. When I do, I stand next to my dad and he can see when people are coming, and say ‘oh, we have to stand in here now’,” explains Maeve, who was diagnosed with Stargardt disease at the age of five.

Because she has it so long, she has “mostly adapted fine” to life with sight loss. In primary school, she used magnifying glasses and sat at the front of class, near the whiteboard. She started to learn Braille and visiting teachers helped her with her studies. But secondary school was tough for the girl who relies on her peripheral vision. “The school often forgot about my sight loss and I’d miss out on work.”

Moving to a different secondary school, with “a good track record with visually-impaired people”, has made all the difference – she has had SNAs for the first time and her grades are up. “It’s been amazing. The school has been so proactive, always making sure I have everything I need,” says the Leaving Cert student, who adores baking, is an avid gamer (“especially Pokémon, ever since I was a little girl”) and loves science – she wants to study Science and Biology at third-level.

It was partly with a view to college and to life on a big crowded campus that Maeve decided she’d train in use of a cane – the mobility aid helps somebody with sight loss to locate potential hazards, as well as changes in the texture and level of the ground ahead. “I don’t wear glasses so I don’t look visually-impaired. A cane would be a good signifier to other people.”

And her eyesight is worsening. “I’m pretty independent. I get the bus and I go to the cinema or shopping with my friends [in normal times] and if I know the place I’m fine. But if it’s too bright or too dark or it’s a new place, I can’t navigate. I find it difficult going up and down stairs – it’s hard for me to know where the step ends.”

Thinking ahead to college and how essential a cane would be, she says: “College campuses are so big and there are so many people. I mightn’t have an assistant or they mightn’t be with me at all times. My friends mightn’t go to the same college so they wouldn’t be able to help.”

Social-distancing with sight loss: living in the dark in a Covid-19 world

Maeve’s cane-training was an early casualty of the Covid-19 shutdown. The day after school closures she was to attend a meeting with NCBI (National Council for the Blind of Ireland) about starting the training. “The meeting had to be cancelled. I’m still in contact with NCBI and they’re prioritising me – as soon as they can they’ll get me training,” says Maeve, who – like over 60,000 other students – is also grappling with the Covid-19 impact on this year’s Leaving Cert.

“July 29 feels so far away. I haven’t got my head around it. I know it’s there and it’s coming but it feels so far away that I feel I can’t reach out and grasp it.”

Meanwhile, Maeve’s current reluctance to go outside, even for a short walk, is mirrored across the 220,000-strong community of people affected by sight loss in Ireland. “People living with sight loss navigate their entire lives through touch – now they don’t even have that,” explains Fighting Blindness CEO Kevin Whelan.

The charity is the primary source of specialised counselling support for people living with sight loss in Ireland, as well as their families and carers. With the Covid-19 closedown they’ve transitioned their service from face-face to telephone counselling. “Demands for our support services have increased dramatically. People with sight loss have predominantly elected not to go out – they’re much too anxious. They feel safer in their home, but there’s a feeling of isolation and of a need to talk about that,” says Whelan.

To combat this isolation, Fighting Blindness has set up various platforms on Zoom, e.g. coffee mornings, a technology club (“the idea is to explain how devices like ipads can be more helpful in an unsighted world”) and music lessons (“because art is a significant support to people with disabilities”). Whelan urges anyone concerned about somebody with sight loss in their family or community to contact Fighting Blindness for tips on how they can make life more bearable for the affected person at this time.

Rugby legend and Fighting Blindness ambassador Shane Byrne recalls his grandfather, a surgeon, tragically losing his sight and hearing in his early 40s in the space of just nine months. “As a family we know how much devastation and grief sight loss can cause. Fighting Blindness is providing vital support to people living with sight loss and their families – it’s an invaluable organisation. During this difficult time, I would urge those who can to donate to them.”

For more information on how Fighting Blindness can help you or a family member in current circumstances, visit www.fightingblindness.ie/Covid-19. You can donate online via www.fightingblindness.ie/donate.

Looking out for those with sight loss during Covid-19

NCBI (National Council for the Blind of Ireland) is concerned about the ongoing impact that social distancing rules are having on the mental wellbeing of people who are blind or vision impaired.

They say people with sight loss live in a more tactile world – and the absence of human contact and touch further exacerbates feelings of isolation.

NCBI chief services officer Alan Breathnach says: “During Covid 19, people are still receiving a diagnosis and/or experiencing a deterioration of vision and trying to come to terms with what this means for their future. This adjustment, coupled with the instinctive human need for physical social connection at a time when it’s not permitted, can be overwhelming for some.”

NCBI offers tailored practical and emotional support to service users countrywide to help them through this challenging time. This can include telephone and video calls in a one-to-one or peer group setting. Anyone seeking support can call NCBI national helpline 1850 334353.

The charity provides:

  • Emotional support/counselling for people struggling to come to terms with sight loss.
  • Rehabilitation training, including independent living skills and mobility training, which may include using a long cane.
  • Advice and information.
  • Low vision solutions e.g. magnifiers and other aids, to help people read standard print.
  • Assistive technology advice and training to either magnify or read aloud what’s on screen.
  • Library – large-print and audio books – giving back joy of reading.
  • Employment advice.
  • NCBI must raise €3 million annually just to keep operating at current levels. To donate and for more info, click here.

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