My story.

July 2015, South Korea. 

It’s hard to believe I didn’t notice it sooner. But somehow, impossibly, I was only just realising that something was wrong. It had happened so slowly – that was the problem. 

I could see what looked like hundreds of insects, and they were crawling out of a tiny, oscillating sun, so brilliantly white it seemed to bruise. I closed my eyes. The insects, the sun – it was all still there. That’s because they weren’t in front of me: they were inside my eyes. 

Something was wrong, and I was 19 years old, alone, and five and a half thousand miles from home. Panic rose in my throat like vomit. I left my room to walk down to the main road. Even though it was past midnight, Seoul was hot and humid, and walking through the sticky air felt like wading through liquid. I flagged down a taxi and asked the driver to take me to hospital, struggling to construct the sentence in Korean as panic held me in a chokehold. 

Every six minutes, someone else in the UK begins the terrifying journey into sight loss that I began that night. That’s 250 people every day.

I learned about blindness through experiencing it. But for many, it is only when it happens to them or someone they know that they seek out information about sight loss. And it seems that ignorance is being passed down from one generation to another. 

According to one study, 43 per cent of blind or partially sighted children had been bullied at school, and their parents believe education about sight loss can play a key role in ending this abuse. Only 15 per cent of parents with a visually impaired child felt that other parents were presenting their own sighted children with a positive role model for how to interact with the blind and partially sighted. But 91 per cent felt that educating these parents would help change the way their sighted children treated their blind classmates. 

Leading ophthalmologists and researchers have called for 2020 to be the year for Britain’s new government to take “urgent action” against blindness, in an open letter published in January 2020 in The Guardian. They criticised the fact that only 1% of UK grant funding goes to eye research, denouncing this as “unacceptable” when “so much more needs to be done”.

I want to take this further. Let us not only make 2020 the year to fight sight loss with science, but let’s make it the year we become better informed about what sight loss actually is and how it affects people’s lives.

Many people assume that blind people see nothing but blackness. But just as the people affected by sight loss are diverse, so too are the ways in which your vision can be affected.

Me.

I have a condition called familial exudative vitreoretinopathy (FEVR), which causes the abnormal development of the blood vessels in the eye. It’s a rare, hereditary, and degenerative eye disease that affects an estimated fewer than one in 100,000 births. People with this disease will not always experience visual symptoms.

Emma.

When Emma’s mother saw that her eight-year-old daughter’s eye was extremely bloodshot, she took her straight to the GP. They were then sent straight to A&E.

Weeks later, the retina detached and Emma lost the vision in her right eye from a virus called acute retinal necrosis. Three years later, aged 11, the same virus began to infect her left eye, but was fortunately caught early. Emma was left with only light perception in one eye and limited vision in the other.

Mark.

For Mark, the retinitis pigmentosa he had had since birth lay inactive and undetected until nine years ago, when deterioration began and he was finally diagnosed in his thirties. 

John.

John has had retinopathy of prematurity since birth, and as a result, can see only “a binary world of light and dark”. 

“I get the idea of there being a spectrum of colours, but I could never imagine what that looks like in practice. I think that seems odd to some people.”

Maegan.

Maegan was two years old when one eye was removed in her battle against retinoblastoma (a type of cancer). She retained functional vision in her other eye until she lost all sight when an operation that aimed to reattach her retina went wrong. 

“In the span of just one morning, I’d become completely blind. As one may imagine, it was absolutely terrifying.”

She was seven years old. 

Now with two prosthetic eyes, Maegan describes her field of vision now as like “extremely thick fog”. 

“It’s as if I can nearly glimpse through a layer of blurry, grey-white, but not quite. It isn’t dark, as is so often thought. Rather, it’s dreary in appearance, as fog is.”

Blindness does not only affect the way you physically perceive the world, but also has a drastic impact on people’s mental health. Many blind and partially sighted people feel isolated and dependent, and suffer from episodic or long-term depression, anxiety, and agoraphobia.

The data is compelling and upsetting, and beneath the surface of the numbers are great swathes of people who are losing – or have already lost – the ability to effortlessly do everyday things like reading, writing, cooking, and travelling around on their own, things that most people take for granted. For me, the hardest things were the isolation from the written language, not being able to see the faces of the people I love, and the knowledge that things would only get worse with time. 

For Emma (now 26), having a visual impairment had a big impact on her mental wellbeing. She was diagnosed with depression in 2016 and prescribed antidepressants.

“I felt loosing my sight made me more dependent on carers, and made me feel more isolated. I also felt more annoyed, irritated and frustrated at every day tasks.”

For Mark, it was being a parent that made blindness especially difficult.  

“For a long time, I was in a state of depression which lasted years, as I was a single parent bringing up three children. I felt that my eyesight had affected how I brought them up, not being able to do things sighted people could with their children. It made me very sad.”

Maegan, now 17, said: “Blindness has caused extreme detriment  to my wellbeing.  The inability to drive causes me great sadness and frustration. 

“I’ve lost a freedom so many others have and take for granted. It especially upsets me because I know that I cannot change it.”

Mark.

“What I do want people to know about people with sight loss is that just because you have a disability does not mean you cannot achieve great things.”

John.

“I’d like people to know that it’s a physical condition which doesn’t need to create a difference between blind and sighted people.”

Maegan.

“If I were to let anyone know the most important fact about blindness, it’s that the disability does not, in any way, define the individual. 

“We have hobbies, preferences, styles, and more, not  determined by our blindness. 

“We are people too, not objects to avoid, coddle, or ridicule.”