When Holly Tuke was born at just 24 weeks she weighed less than 1kg and her future hung in the balance.
But, 23 years on, Holly is a force to be reckoned with as she challenges stereotypes and fights for the rights of people with disabilities and writes an award- winning blog, Life of a Blind Girl.
As a result of being born so prematurely and weighing just 625g Holly has retinopathy of prematurity.
“I have perception of light and dark, so have no useful vision,” explains Holly from York. “I also have a detached retina in my left eye.”
She spent her first day in special care at St James’s Hospital in Leeds.
In the womb, the retina (the light sensitive surface at the back of the eye that converts images into nerve signals that the brain understands) develops slowly and the retinal blood vessels often only complete growing by the end of gestation.
If a child is born prematurely these blood vessels can grow abnormally causing damage to the retina and, of course, vision. This is called retinopathy of prematurity.
Retinopathy of prematurity (ROP) affects around 20 per cent of babies who are born prematurely.
But this determined young woman has never let her disability hold her back.
“I read braille and use a screen reader which means I can access the internet and most websites.”
Ever modest, Holly doesn’t just read braille in English, she reads French, German – and music.
The screen reader does exactly what it says on the tin. By using either a voice synthesiser or a braille display, screen readers are able to read any text that’s displayed on the screen to the user. As she has never had vision, Holly says she knows no differently and sees her sight loss as a positive.
“It’s definitely helped me. It’s given me unique skills which I wouldn’t have if I was sighted.”
As a youngster attending the mainstream Joseph Rowntree School in York, Holly’s parents encouraged her to do everything her sighted friends were doing. She then went on to study at York St John University where she now works as an assisted technology advisor, helping disabled students access equipment and extra support.
“People often say to me ‘how did you do that?’ and I say ‘in the same way as sighted people do’.”
The only thing it seems that Holly can’t do is drive, and that has brought its own frustrations.
“I use a lot of public transport and there is supposed to be assistance, particularly on the trains, and it often doesn’t turn up.” Access to live concerts is another bugbear for this keen music lover.
“Being disabled, you cannot access VIP packages to gigs or take advantage of early booking as, more often than not, accessibility is not included or clear.”
It was these frustrations and also a desire to raise awareness of the challenges facing someone with visual impairment that saw Holly start her blog in 2015.
She finds social media empowering and uses it as a tool to educate people of what it’s like living day-to-day with sight loss.
“Initially I wanted to share my experiences of living with vision impairment and to show other vision-impaired people that you can live a normal life,” says Holly.
“It has developed into a platform that provides people with advice and support on all things visual impairment and disability. I also aim to tackle the stigma surrounding disability,” says Holly. “I didn’t have any idea where it would lead, or whether anyone would want to read it, but people have said it has helped them look at visual impairment in a different way.
“I try my best to educate people on visual impairment and disability. By doing this, I hope it portrays the fact that just because a person is blind, visually impaired or has another disability, it does not mean that they cannot get to where they want to be in life, it does not mean that they have to be treated any differently to anyone else and it does not mean that they cannot carry out everyday tasks and activities because truth is, they can.”
It seems that Holly is doing something right, and people are listening and taking notice.
In 2017 she was shortlisted as health blogger of the year and appeared on The Shaw Trust’s Power 100 List 2018 of most influential people.
“It’s a bit surreal really,” she says. “I don’t see myself as inspirational or particularly infuential – I am just being me
“I have a passion for helping others and winning these accolades has given me the opportunity to do that.
“People have so many misconceptions about people with visual impairment – often they are trying to be kind, but I wish they would just ask rather than assume I can’t do something.”
Holly is also passionate about making a difference and is lobbying councils and the powers that be to put disabilities first.
“Accessibilty shouldn’t be an after thought, it should be fundamental,” she says.
“If I didn’t have a visual impairment then my blog wouldn’t be what it is today, Life of a Blind Girl most certainly wouldn’t exist. If I was sighted, I may have started a blog to discuss other things and share my interests such as music, beauty and fashion, but it wouldn’t be centred around disability.
“Therefore, I wouldn’t be known as a disability blogger.
“There’s no doubt about it, my disability has a huge impact on my life and many aspects of it are shaping my future.
“However, my disability isn’t the only thing that defines me, my visual impairment is one of the many aspects that makes me who I am.”
To learn more, visit Holly’s blog lifeofablindgirl.com.