IT is the age when most teenagers are anticipating the freedom of their university or college years.
At 18, Claire Forde says she felt as if her life was over.
In a matter of weeks, she had lost 80 per cent of her sight.
At the age of eight months, she was diagnosed with hydrocephalus – a condition that causes cerebrospinal fluid to build up in the brain, damaging tissues.
Surgeons fitted a device known as a shunt to drain the excess fluid and, for years, the condition caused no issues.
However, when she was 18, a routine scan showed there was a blockage in the shunt. It was successfully replaced but the build-up of fluid caused irreversible damage to the optic nerve, which transmits all visual information to the brain.
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“It was heartbreaking and terrifying at the time because you go from having very good sight to very poor sight,” said the 25-year-old from Greenock.
“I lost all of my forward vision and most of my peripheral vision. It was the timing of it too. I lost my sight in March 2014 and I was just about to sit my Highers in sixth year.
"My friends were all going off to university and college at a time when I needed them most.”
A keen football fan, Ms Forde said one of the worst aspects was the prospect of never being able to watch Celtic play again.
“I thought my life was over,” she said. “It was really, really hard.”
They need to encourage people from all backgrounds and diversities.
Inverclyde Council arranged for her to do a seventh year at school to complete her Highers and she learned Braille from a teacher who persuaded her to join Haggeye – a youth forum and campaigning group run by the Royal National Institute of Blind People (RNIB).
“I’ve always had a passion for politics and really enjoyed it,” she said.
Ms Forde was persuaded to put her name forward for election to the Scottish Youth Parliament, giving her the chance to represent those with sight loss.
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She was voted in as a MSYP alongside Steven Sutherland, 27, from Kilbarchan, Renfrewshire, who has the sight loss condition hemianopia.
With the support of her fellow MSYPs, she flourished in her new role. Through her campaigning efforts, mandatory vision awareness training will be introduced across the public sector and she has helped to reduce the stigma of canes.
“Many young people are embarrassed to use a white cane,” she said. “We all know young people are vain about how they look – I was one of them: I didn’t want people to pity me.
“Those not using a cane, however, are more likely to walk into things, to trip and fall, be abused or even assaulted by fellow pedestrians for their ‘clumsiness’ or for ‘not looking where they are going’. I was very gratified recently when a 14-year-old girl with sight loss told me I had inspired her to proudly use her cane.”
“I’ve got to the stage now, where it’s part of me, it’s part of my physical appearance.”
Ms Forde believes there is not enough diversity in Scottish politics, referencing Denis Robertson, who represented Aberdeenshire West from 2011 until 2016 and was the first blind MSP.
“ I think there is still obviously major, major work to be done,” she said.
“I don’t know whether disabled people in general don’t have the confidence to put themselves forward or they just feel intimidated.
“They need to encourage people from all backgrounds and diversities.”
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Ms Forde will complete her second, final term in November, but says she has no ambitions to become the next Nicola Sturgeon.
“What really struck me was the fact that blind, partially sighted and disabled people have to fight for what they need and what they are entitled to. It’s actually quite shocking.
“I think the treatment of disabled people could be better, especially the public’s perception,” she added. “That’s what inspired me to get into politics.
“But in terms of pursuing a career, I think it would just be too much pressure.”
Ms Forde said losing her sight has made her appreciate what she has, including the unwavering support of her parents, Eamonn and Ellen.
She was still attending Celtic matches most weekends, pre-pandemic, thanks to
volunteers who provide detailed commentary for blind people.
After her two-year tenure as an MSYP ends, she will continue her campaigning work with the RNIB and hopes to pursue a career in radio after dipping her toe into podcasting.
“There are days when you think ‘what’s the point’, but ultimately there are things out there to achieve,” she added. “You’ve just got to persevere.”
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