Ellen Doherty, 47, from Glasgow, who has macular degeneration due to Stargardt’s disease, became one of Scotland’s first Sight Loss Council volunteers earlier this year and is determined to inspire others to make accessibility a priority.
Ellen, who spoke at a fringeeEvent on street accessibility at the weekend as part of the SNP Conference, is a highly independent person but she still faces daily challenges including poor street accessibility. Navigating streets can be difficult and stressful due to the lack of visual cues, unexpected obstacles, and inconsistent designs.
A trained mental health professional and mindfulness tutor at Strathclyde University, Ellen explains that sight loss is one of the most traumatic experiences a person can face, with constant reminders every time they open their eyes.
Simply leaving the house or visiting places requires extensive planning, and confidence can be easily shaken. This is why it’s crucial to involve people with vision impairments in planning for street accessibility and to use their lived experiences to guide informed decisions.
Ellen comments on her sight loss: “When I was seventeen, I was struggling to see the blackboard at school, so I went to the opticians with my parents to see if I needed glasses.
“I was told I had Stargardt’s disease and that I would lose my eyesight prematurely. This was obviously a huge shock, but I just got on with my life and tried not to think about it. I wasn’t given any real information about what was happening, or offered any help or support, so I just pushed it down and tried to pretend everything was normal. I was 17 years old, it really meant nothing to me.
“So I finished school and went to university, and then in my final year, when I was twenty-one, I lost my central vision almost overnight. It was very overwhelming and traumatic. I drove myself to the eye hospital where I was given my CVI certificate, and then I had to get the bus home.
Again I tried to supress my feelings and tried to pretend it wasn’t happening. I finished my pharmacology degree at university and got a 2.1; but I now couldn’t use it as you can’t do benchtop science with vision impairment.
So, I went back to university to do a master’s in psychology, but I hadn’t really thought about the impact my sight loss would have on this. Eventually, I had to put this on hold for a year as I wasn’t prepared to cope with my new reality, I didn’t even have a magnifier to help me read.
“For years I struggled to come to terms with my sight loss, so I didn’t want to talk about it, I didn’t want to ask for help, I just tried to ignore it. My approach has always been to keep my head down and just get through it.
My vision impairment isn’t obvious and for a long time I didn’t want to over enclose, I didn’t want to talk about it and felt like it wasn’t anyone else’s business. At 30 I also developed MS which impacted my sight loss further. MS can be brought on by a traumatic event so it could have been my sight loss which caused this.
“I have always been hesitant to engage with sight loss groups. Since losing my sight was not something I wanted in the first place and it already occupies so much of my life, I didn’t want it to take up any more space.
However, I now realise the importance of talking and sharing, both for myself and others, and that I have a lot to offer through my lived experiences and work experiences. There needs to be more general education about vision impairment and improved awareness-raising, as vision impairment can mean so many different things.”
Ellen’s experience with sight loss, much like many others, has been deeply traumatic. She now aims to help others through her work as a mindfulness and wellbeing tutor and volunteer for the Sight Loss Councils.
“This is one of the main reasons why I am so happy to join the Sight Loss Councils. My skillset centres around helping people, and there’s a significant need to enhance the help and support provided to blind and partially sighted individuals.
” From my own perspective, it was so difficult to lose my eyesight rapidly, I desperately needed help and guidance so I could come to terms with what was happening. I felt like my eyesight had been snatched away and I just didn’t know what to do, or to whom to turn. I now know this shouldn’t have happened and that I should have been given far more help and support.
Ellen adds: “When someone experiences sight loss, they need help to stay on the right path, including psychological therapy, mobility and accessibility assistance, and help with employment. No one should be left to navigate sight loss alone.
“It is one of the most traumatic experiences a person can endure, with constant reminders every time they open their eyes. Escaping from it is impossible. For those who haven’t experienced it, it is very difficult to understand. This is why it is so important that we use lived experience to raise awareness and ultimately make changes.”
Sight Loss Councils are delivered in Scotland by Sight Scotland, Sight Scotland Veterans and Visibility Scotland and funded by Thomas Pocklington Trust.
For more information please visit sightscotland.org.uk
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