What is blindness?
Posted on 3rd December, 2024
International Day of People with Disability (IDPWD) is a United Nations day that is celebrated each year on 3 December. The day aims to promote an understanding of disability issues and mobilise support for the dignity, rights and well-being of those who live with disabilities.
To mark the day, we’re publishing an excerpt from chapter one from Michael Crossland’s important book Vision Impairment. In this extract, he describes how the word ‘blind’ can be an emotionally charged term, and how one of his patients took the news of worsening vision impairment in a surprising way.
‘So would you say I’m blind?’ Sam asked.
This sounds like a straightforward question. Sam had been attending my low vision clinic for six years, so surely I would be able to answer her without a second thought?
Sam had an eye condition called Stargardt disease, which was slowly causing the cells in the central part of her retina to stop working. Just after starting high school when she was 11, she had found it difficult to see the whiteboard in some of her classrooms. Assuming she needed an eye test, her parents took her to a local optometrist who prescribed spectacles, but they didn’t seem to make much difference to her sight. Her family realised there was something seriously wrong when Sam
asked for the ketchup bottle to be passed, not seeing that it was right in front of her. A trip to her doctor led to a referral to an eye hospital, blood tests, scans, photographs and the unwelcome news that she had a serious, inherited and generally untreatable eye disease.
Sam remembers the news being broken: ‘The consultant just said “there’s not a lot we can do”,’ she told me. ‘I felt a bit like he was washing his hands of me, although I’m really pleased he referred me to this place.’ ‘This place’ was the low vision clinic we were sitting in, buried away at the back of the hospital. At her previous visits to the clinic I had prescribed Sam strong reading spectacles, given her various magnifying glasses and shown her how to set up her iPhone to make it easier to see. I’d spoken to her specialist teacher for visual impairment to make sure she had a relay system for the whiteboard at school, and had given her details for a group so she could meet other teenagers with sight loss. Since her first visit, Sam had changed from being a shy and slightly awkward girl to a rebellious teenager (an appearance not helped by the way that her vision loss made it difficult to maintain eye contact), then a funny and engaging young adult. Now she had green hair and wore Doc Martens, a denim jacket and a ‘Meat is Murder’ T-shirt.
Sam’s question about whether I would call her ‘blind’ may have been spurred on by the fact that her vision had clearly got worse. For the first time, she could no longer make out the letters on the top row of my sight chart, four metres away from her. When I wheeled the chart closer to Sam she could read the first few letters by moving her eyes around, sliding the blind area in the central part of her vision away from what she was looking at and using her peripheral retina to just about see.
Sam had told me that she’d got the grades she wanted in her A Levels and that she was very excited about moving to Leeds to study politics. She’d told me that her football team had won a tournament that summer and that she’d started a band with some of her college friends. She could travel independently, using apps on her phone to help when she couldn’t see a bus number or platform sign. Her vision was too poor to have a driving licence, but she could cycle to band rehearsals. She’d
had enlarged print and additional time in her exams, but she didn’t read braille or have a guide dog. Would this active and successful teenager meet most people’s idea of a blind person? The poet Stephen Kuusisto talks about people entering ‘the planet of the blind’,1 but would Sam be welcome there?
The word ‘blind’ is emotionally charged and tends to be avoided by people working in eye clinics. In the UK, being ‘registered blind’ was replaced in the early 2000s with ‘having a certificate of vision impairment’. In ophthalmology research, we even speak about ‘double masked trials’ rather than the ‘double blind’ studies used in other areas of medicine.
This coyness around the word ‘blind’ isn’t universal. Many of the major sight loss charities use the word in their names, such as the UK’s Royal National Institute of Blind People, the National Association for the Blind in India and New Zealand’s Blind and Low Vision NZ. In 2011, the London-based Metropolitan Society for the Blind renamed themselves ‘Blind Aid’, which almost feels like reclaiming the word for people with vision impairment.
Writer Georgina Kleege uses the word ‘blind’ as she dislikes the alternatives: ‘The word “impairment” implies impermanence … but my condition has no cure or treatment … I crave the simplicity of a single, unmodified adjective. Blind. Perhaps I could speak in relative terms, say I am blinder than some, less blind than others.’ Kleege has only come to embrace the word ‘blind’ after several decades of low vision. She writes that as a teenager ‘the most I would admit to was a “problem with my eyes”, sometimes adding, “and they won’t give me glasses”, indicating that it was not me but the wilfully obstructionist medical establishment which was to blame for my failure to see as I should’.
When Sam asked if she was blind, I heard her father gently whistle at the gravity of the question. The room was so small that I thought I could feel his breath on the back of my neck. The background hum of the busy clinic around me seemed to drop, as if everyone was waiting for my response. Even as I spoke, I knew my answer was a cop out: ‘The word “blind” means something different to nearly everyone I meet,’ I told her. ‘We prefer to say “severely sight impaired”. It’s true that if you were in America you’d be called “legally blind”, but you’re certainly someone who uses your eyes for most things, so I don’t think “blind” would be the best word to describe you.’
‘Legally blind,’ Sam said, almost under her breath. I thought she was going to comment on this dramatic label, but she surprised me instead. ‘We’ve been looking for a name for our band, and I think that might be it!’