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Love Your Eyes – the journey to accepting sight loss

Love Your Eyes

World Sight Day 2021

On World Sight Day this year, we got a few guests together to talk about the theme ‘Love Your Eyes’, putting our own slant on the theme. We wanted to talk about how we come to accept our sight loss and the importance of that acceptance in helping us to get on with our lives and seek the help we need, when we need it.

We were delighted to be joined by Mike Brace, former Paralympic skier; Dave Nason, Accessibility Lead at Sky and Amie Hynes Fitzpatrick, Corporate Social Responsibility Lead at Scope Eyecare and Healthcare. Thanks to our guests for their honesty and openness during this really valuable discussion.

You can watch the full discussion with Mike, Amie and Dave here: https://youtu.be/PmbvJkmmXGQ

The journey to sight loss is different to everyone and so too for our panel. Amie and Dave both have degenerative eye conditions and have been dealing with low vision since childhood.

“I have Stargardts and Macular Dystrophy and when I was younger there were always things I couldn’t see but I didn’t pay much attention to it. It wasn’t until I was around 10 or 11 and couldn’t see the blackboard in primary school that it became more obvious and in my early teenage years I noticed a lot of changes as my eyesight continued to deteriorate,” explained Amie.

Dave had a similar experience: “When I was a teenager I realised that my bad eyesight was very different to other people wearing glasses. I remember one day when I was 15 or 16, sitting in the passenger seat of my Dad’s car at the traffic lights and I realised that I couldn’t see enough to be able to drive. Those kind of moments just clicked into place over the years.”

For Mike, however, the experience was very sudden.

“My journey was dramatic and traumatic. I can pinpoint my sight loss to the day. In November 1960, I was playing football in the local park when I saw some kids. I asked them what they were doing and they told me to get lost, but I didn’t. I saw what looked like a black medicine bottle on the ground and picked it up just as the banger inside it blew up. One eye was badly injured and I eventually lost the sight in the other eye through sympathetic ophthalmia and a detached retina a few years later.”

One of the themes that emerged from our discussion was the need to balance independence as a blind or vision impaired person with the need to ask for help occasionally.

Dave: “I have a progressive condition so my need for assistance changed as I got older. It was really in my late teens and when I was in college that I needed more assistance. My problem was that I never looked for help. I didn’t have an understanding of what was out there so didn’t know where to turn.”

Both Dave and Amie agreed that meeting other people with sight loss had a hugely positive impact on their lives. “A big turning point for me was when I went to the NCBI training centre in my late 20s. For the first time I started meeting other people who were blind and started using lots more technology.”

Amie adds that seeing someone use assistive technology for the first time was both empowering and terrifying.

“When I was diagnosed with Stargardts, my Mom wanted me to meet other people and I had a demo of JAWS and Zoomtext. I could see it would help me but it was also terrifying. I didn’t know if I would ever be that good but it stuck with me that technology would make me more independent and I slowly got better at it.

Mike also found it very difficult to accept his sudden sight loss. “I resented going blind and I didn’t want much assistance. I just wasn’t accepting that I had lost my sight. In those days, there wasn’t much around. The emphasis for me was independence and that’s obviously very important but I wish someone had helped me develop ways to cope with dependency. It took me a long time for me to ask for help because I thought it took away from my independence and my self-worth and self-belief.”Our final question to the panel was what they would say to their 18-year-old selves, now that they are somewhat older!

“Own it!” says Dave. “Accept your vision for what it is, learn how to ask for help and accept help. I didn’t want to stand out so I hid my vision impairment for as long as I could. I didn’t use the help that was out there. If I’d even carried a symbol cane at an earlier age, it would have helped me with social connections in college and to introduce myself as vision impaired from the start.”

Amie shared what would have helped her when she was younger. “What would have meant the most to me would have been someone saying ‘it gets better’. The supports are there and there are great leaders who are owning it and living it. Be kind to yourself. It’s quite traumatising to lose your sight and to continue to lose your sight – nobody expects you to be the most perfect blind person overnight.”

Mike’s words to his younger self echo what Amie and Dave said, with a focus on self-belief. “Have a better sense of self-belief and be more challenging. It was so important to me to challenge what I thought my abilities were. If people around you tell you you can’t do something, you have to challenge that and get people to see your ability rather than your disability. That comes from self-belief.”

For more advice on how to tackle life’s challenges, read our blog here