Speaking to Amanda Eleftheriades, Clydesider volunteer Johnny Dale shares his experience of near sight loss during childhood followed by a lifetime battling systems blind to his access needs.
“To be able to see the flowers, the trees, the sky, it’s like I’ve been given a second chance at sight again and I’m so grateful for it.
“Now I just need the people who are meant to support me to see what I can do, and not try make me do what they think is best, just to get me off their hands.”
At the age of 14 Johnny started to lose his sight.
His GP initially put his vision problems down to migraines.
Johnny refused to accept this, and when McLaren’s Opticians in Clydebank spotted a change in shape in his eye, he was referred to specialists at the old Western Infirmary.
“I knew it was going to be bad news because he looked at both eyes for a very long time.
“Then he told me I had this disease called Keratoconus,” Johnny remembered.
“It is an inflammation of the cornea which makes it bulge on the outside and distorts vision.
When you look at things it’s like seeing a mixed-up puzzle in front of you.”
Johnny was given gas permeable contact lenses to try and help maintain his vision but as the disease progressed it became more difficult to get the lenses in place.
“On the day of my step-grandfather’s funeral I couldn’t get the lens for my right eye to stay in
“I had been told this would happen eventually, it’s the stage when the cornea comes apart and the retina keeps trying to add fluid to the eye to clear it, so my vision was totally blurred.”
In January 2002 at the age of 17 Johnny had his first cornea transplant.
He then had to endure months of his body trying to reject the new tissue and needed steroids and immune-suppressant medication to protect it.
“It takes a long time for sight to start to come back and it happens in wee flashes.
“It’s like someone giving you a glimpse of what it’s going to be like and then taking it away again.”
Eventually his right eye had improved sufficiently that in 2005 he was able to have a second transplant and the cornea in his left eye was replaced with healthy tissue.
Throughout this time, he received support from the Royal National Institute for the Blind (RNIB) who helped secure a grant for a specialised laptop, camera and magnifying software.
They also sent a support worker to his home, at the time in the Highlands, to show him how to use all the new equipment.
But when he returned to Clydebank to go to college, he discovered a missing link in the support as no-one explained his situation to his tutors.
“It’s a lot of equipment and the tutors would avoid me when I started to set this up in the classroom, they didn’t understand why I needed it.
“If RNIB had been able to explain to them about my sight it would have helped.
“But it was better than when I was at school, I wish I’d had all that equipment then.”
College was a difficult and stressful time for Johnny as he found most tutors lacked understanding and resources to support disabled students.
Charities intended to help people with disabilities also let him down.
He recalled at one point being sent to join a group for adults with severe additional needs.
“None of them could talk, they were just sitting in this room rocking back and forwards and they wanted me to join them because I couldn’t see properly!
“Fortunately, my gran was with me, and she just said we’re getting out of here.
“Most of these big charities don’t look at the individual person, they just try to make you fit in with what they can offer.”
Love of Nature
Refusing to be neatly pigeon-holed Johnny instead focused his attentions on nature and the environment.
And over the past 10 years he has almost single-handedly reforested his family croft in the Highlands.
He also volunteers with several community garden groups and is a Board member of Kingsway Community project.
Passionate about the environment he is keen to share his extensive knowledge and experience of working alongside nature and has written several articles for the magazine.
Now he would like to get a job working with nature or gardening but finds the services funded to support people with disabilities into the workplace still don’t understand his needs.
Johnny said: “The job centre referred me to Enable and since I’ve been going there, I’ve told my story to at least four different workers.
“None of them last long.
“The last young girl I saw arranged to meet in Costa café in Clydebank.
“It was the middle of the day, and she was sat right by the coffee machine, so it was almost impossible to hear her.
“As well as my sight problems I also struggle with processing words when there is a lot of background noise.
“She didn’t seem interested in anything I had to say, just constantly tapping away on her laptop without even making eye contact.
“Then she said ‘I think the best thing for you is to go to college.’
She didn’t even ask if I’d been to college before or what I wanted to do.”
Get To Know Us
Johnny said he’s sick and tired of being passed from one place to another.
“They don’t know what to do with me, so it’s a game of pass-the-parcel with Johnny.
“They moan at us when we don’t turn up, but why should we, if they don’t treat us like individuals, as human beings?
“They should employ more people with personal experience of sight loss and other disabilities, so they understand what it’s like and have some empathy.”
Johnny feels of all the different systems and organisations he’s been involved with, only the RNIB really understood his issues and provided the support needed.
Although able to see in bright daylight he still struggles at dusk or when it’s raining and often needs to ask for help to read a bus number or get on a bus if his vision is blurred.
“I keep getting told ‘you can read, you can write and take all those beautiful photos, your sight can’t be that bad,’ but I can’t focus on text for long as my eyes and brain don’t process it in the same way, and I get motion sickness.
“I need two cleaning fluids for my lenses but that’s £46 a month. I can’t afford that.
“Now they want me to go back to college but what support am I going to get there?
“People don’t understand, even when I explain it over and over.
“Telling my story time and again, it gets so my body and mind just give up talking.
“It feels like, what’s the point? I just get quieter and quieter because no-one is listening to what I have to say.”
For now, volunteering in the community gardens and sharing his nature and wildlife posts on Facebook is where Johnny feels understood and appreciated.
We asked Enable for a comment but they failed to reply.
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