Blind Spot E-Book

Maud Rowell

• Herausgeber: 404 Ink
• Kategorie: Geisteswissenschaft
• Serie: Inklings
• Sprache: Englisch
• Veröffentlichungsjahr: 2021

Seitenzahl: 118

Beschreibung

Two million people in the UK live with sight loss, and many more worldwide. Yet the general population knows very little about the day-to-day life of the blind, who must move through a world not designed with them in mind, from city planning and technology, to pop culture and education. What's more, blind people often fall off the pages of our history books, despite being some of the most prolific figures in their fields. In Blind Spot, Maud Rowell challenges readers to think differently about what they may take for granted, carrying them on a whirlwind tour through time and space - from Japanese tube stations to the 18th century museum - to showcase what the world looks like for someone who does not see. She offers practical insights based on her own experiences, as well as spotlighting incredible blind pioneers - explorers, artists, scientists, and more - through history and the current day, unearthed through her own research and interviews. In educating us about the realities of sight loss, Maud shows us how to be aware of our own blind spots, offering the knowledge needed to become better, more tolerant members of diverse communities. Society needs to support everyone - it's time we caught up.

Leseprobe

Blind Spot

Published by 404 Ink Limited

www.404Ink.com

@404Ink

All rights reserved © Maud Rowell, 2021.

The right of Maud Rowell to be identified as the Author of this Work has been asserted by her in accordance with the Copyright, Designs and Patent Act 1988.

No part of this publication may be reproduced, distributed, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without first obtaining the written permission of the rights owner, except for the use of brief quotations in reviews.

Please note: Some references include URLs which may change or become unavailable after publication of this book. All references within endnotes were accessible and accurate as of September 2021 but may experience link rot from there on in.

Editing: Heather McDaid

Typesetting: Laura Jones

Cover design: Luke Bird

Co-founders and publishers of 404 Ink: Heather McDaid & Laura Jones

Print ISBN: 978-1-912489-42-8

Ebook ISBN: 978-1-912489-43-5

404 Ink acknowledges support for this title from Creative Scotland via the Crowdmatch initiative.

Blind Spot

Exploring and Educating on Blindness

Maud Rowell

Contents

Introduction

Chapter 1: On visibility

Chapter 2: On accessibility

Chapter 3: On culture

Afterword

References

Appendix

Acknowledgements

About the Author

About the Inklings series

Author’s note

Throughout this book, I have used the terms “blind” and “blindness” to encompass a diverse spectrum of non-normative ways of seeing that cannot be corrected; I have only used terms like partially sighted or visually impaired when quoting someone else. The reason for this is purely personal – I do not wish for my vocabulary to feel clinical or medical, or categorise people unnecessarily. It is not that I take offence from alternative terms – it is simply that I identify as blind, and so this is the word I choose to use. I also think rehabilitating the word “blind” to refer to all of these ways of seeing helps people better understand that blindness, by its very nature, is spectral – it is not just one thing. We should embrace that it has a multitude of meanings, and manifests itself in different ways for everyone.

Everyone I spoke to directly is referred to with their given name after being introduced; Japanese and Korean names are written with their family name first and given name second.

Introduction

“Are you human?”

This question floats in the middle of my computer screen, accompanied by a gridded image on which I am instructed to pick out all the traffic lights, motorbikes, or taxis. It’s a common enough dialogue box to encounter on the web – a way for one machine to determine whether or not it’s interacting with another. Ever the shapeshifter, it has previously greeted me in the form of a string of shadowy letters printed in a wavy, obtuse pattern inside a pale grey rectangle, which I must transcribe. Easy enough – if you can see. The problem is that I can’t.

There is a small icon to indicate that I can switch the cue to an audio one. But the visual cue always comes first, and the audio is always the alternative, the deviation from the norm. The question my computer is asking reminds me that among those for whom this test is designed to be simple, I am atypical.

For the majority of the human race, sight is the primary sense: it is how we chiefly perceive, build, navigate, and describe the world around us. The very origin of the sense was a game-changer. It first appeared in now-extinct trilobites 541 million years ago, triggered an evolutionary arms race, and ushered in a golden age of biological innovation known as the Cambrian Explosion.1 Almost every animal in existence today can trace its ancestry back to this flourishing catalysed by the organic camera, humans included.

Visual information is so important to our brains that it can even override other kinds of sensory intel, literally altering reality as we perceive it. In a phenomenon known as the McGurk effect, for example, when we see a video clip of someone’s mouth pronouncing the syllable “fa”, that is the sound we hear, even if the overlaid audio is of the syllable “ba”. Our brains trust our eyes so much that they overwrite what our ears are telling us. Our reliance on sight is also the reason so many of us are afraid of the dark: the complete lack of visual stimuli is such an extreme sensory deprivation for humans that an ancient, obsolete anxiety creeps in, and our imaginations fill the unknowable black void with danger. Horror films capitalise off this instinct all the time.

As the visual system is our primary sensory organ, fear of blindness is extremely prevalent. In one 2016 study, 2,044 American adults were asked what the worst disease that could happen to them would be: blindness was the highest ranked answer nationally, having been selected as either the first or second worst case scenario by all subgroups of respondent.2

In another study conducted in the Indian state of Andhra Pradesh in 2002, researchers found that blindness was – again – the disability that was feared the most (it was selected by 92% of respondents, with paralysis coming in second).3 This study also asked its 10,293 participants to say whether or not they agreed with the following statements: 1) blind people have to depend on sighted people to do most of their things; 2) blind people can never really be happy; 3) not much should be expected from blind people; and 4) losing one’s sight means losing one’s self. Across every subgroup, at least 70% of respondents agreed with every single statement; in most cases, more than 90% agreed.

For the first 19 years of my life, when I could see, I had no cause to think about whether or not I agreed or disagreed with those statements myself. I had never encountered anybody blind, and I only saw one-dimensional stereotypes or clichés of blind people in the media and in pop culture – certainly no one to whom I could relate. Blindness (as a concept, a social issue, a reality) floated far away from the edge of my own consciousness, something abstract and intangible. It may as well have been pulled from the world of fantasy or fiction. If I’d interrogated myself, I’m sure I would have envisaged blindness as like being enveloped in pure blackness, as many others do. It’s the “darkness which the blind do see” after all, as Shakespeare wrote in his 27th sonnet.

Then, one hot June night in Seoul, South Korea, as I was finishing up a year of travelling and working before beginning my undergraduate degree, I realised quite suddenly that people’s faces had become invisible. Or rather, there was a kind of shimmering hole in the middle of my vision, so that when I looked directly at something, it was eaten up by that fuliginous central lacuna.

I took myself to hospital, and underwent days of tests, without conclusive answers. Then I was taken in for the first of many eye injections. No one explained the procedure to me, so I lay on the gurney staring up at impossibly bright lights, fighting the panic that was rising in my throat like vomit. The needle went in, and was withdrawn again, and after that the surgeon told me – as I wore my clear plastic eyepatch, feeling fragile and self-conscious – that I had a rare, degenerative eye disease that would make me blind. The injection had not been to cure a small medical blip that could soon be forgotten, as I’d hoped. Rather, it was the beginning of my new life, with a disability that wasn’t static, but something requiring regular trips to hospital and eye injections every four to eight weeks, potentially forever, to try and slow inevitable degeneration down.

Going blind myself, I found that a part of me really did feel that losing one’s sight means losing one’s self. I was the girl who was always reading books, writing stories, drawing and painting. If I had to sacrifice those aspects of myself, what would be left? If I couldn’t see, who was I? Blindness had floated towards me out of the ether, and now it touched every single aspect of my life. And the loss of my sensory comfort zone alone was terrifying – but so too was the harmful narrative surrounding disability I unearthed inside myself. This toxic thinking now applied to me as well as to a whole community that had suddenly stopped being invisible, because now I was looking for it.

So much of that internalised negativity stemmed from ignorance. Without knowing about how blind people engage with the world, I was unable to picture my own future and think strategically about the changes that lay ahead. Without understanding that blindness could manifest itself in the way it did for me – slowly losing my central vision over years – I was completely unprepared for the grieving process that I had to go through. And without being aware of the many brilliant blind people in the world today and throughout history, I struggled to conjure examples of people who proved that the blind really could be independent, and successful, and happy, and realise their ambitions without sight loss limiting them.

But humans can excel without sight, as countless examples prove. Blind people have given us some of the world’s greatest and most culturally significant works of literature, art, and music. They have climbed Everest and won Masterchef. They have revolutionised the mathematical realm, redefined language, and developed our understanding of the solar system and of our oceans. And they have driven – and continue to drive – innovation in almost every field, because seeing differently engenders extraordinary creativity in the realm of problem-solving. Blind people think outside the box that most of us spend our lives in, and we can all harness and benefit from this, in terms of intellectual progress and social justice alike.

So while sight loss will always be an adjustment, it should never mean a severing from your sense of self, or from happiness – and we shouldn’t think it does, either. No one should have to feel that should they go blind, they must sacrifice their dreams or independence. We must fight the pervasive ignorance which feeds this mindset, and which continues to relegate blind history, blind accomplishments, and the realities of sight loss to the shadows. Doing so is a crucial step towards us all becoming better, more tolerant and empathetic members of diverse global communities, and towards making our world more equal, more creative, and more accommodating of difference.

So let’s start with the basics. What is blindness, what does it look like – and why does knowing this matter?

Shakespeare, and so many others, are wrong: it’s act-ually rare to see nothing but the colour black. Blindness is a spectrum, and can take many forms (and most contrary to the popular imagination, people who have had their eyes removed see a kind of white fog). The Argentinian writer Jorge Luis Borges (1899-1986) sought to dispel this myth, stating in a 1977 lecture: “The world of the blind is not the night that people imagine.”4 For Borges, pure darkness was even one of the things he could no longer perceive, and he spent a long time struggling to sleep after the night became characterised by a “greenish or bluish mist, vaguely luminous”.5

One tangible effect of this lack of awareness of a low vision spectrum is the fact that blind people face accusations of faking their impairment, because they contradict the popular image of someone with their disability. That Stevie Wonder is only pretending to be blind has been a popular conspiracy theory for years.6 It’s not just celebrities who catalyse these rumours: a photo taken without consent of a blind woman holding a cane in one hand and a smartphone in the other went viral on Facebook in January 2019, and she was voraciously denounced as a fraud by the online community.7 This is no isolated incident: blind people often have to justify their disability to uninformed strangers, and I have certainly had to engage in this emotionally exhausting practice on many an occasion.

Clearly, a lack of awareness is not a neutral position to take, or an apathetic one: it can inflict palpable damage, and we are passing it on from one generation to another. According to one UK study from 2015, 43% of blind children had been bullied at school, and their parents believed education about sight loss can play a key role in ending this abuse.8 Only 15% of parents with a blind child felt that other parents were presenting their own sighted children with a positive role model for how to interact with the blind – but 91% felt that educating these parents would help change the way their sighted children treated their blind classmates. 

Ignorance also begets inaction, because you can’t act on knowledge that you do not have. Without knowing about the realities of sight loss, people don’t factor access-ibility into how they create culture, interact socially, or design environments, objects and infrastructure. This perpetuates a cycle of injustice on a much larger scale. Every book that is not released in an accessible format, every museum which excludes the blind from engaging with their own history and heritage through artefacts, every city which can only be explored safely and independently if you can see, increases the gap between those who have sight and those who don’t. How can we expect great things from blind people when we don’t grant them the same access to so many of the things which educate us, give us pleasure, or make us human?

There are also layers of injustice at play here, because blindness does not affect everybody equally, even though it can affect anybody. Globally, more women than men experience blindness (in the UK, two thirds of people living with sight loss are women), and certain ethnic groups are significantly more at risk of some of the leading causes of blindness than others.9 Black African and Caribbean people are four to eight times more likely to contract glaucoma, and among the South Asian community, diabetic eye disease is three times more prevalent.10

It’s also lower-income countries and communities that are more acutely affected. In the UK, the leading causes of blindness are diseases for which there are currently no cures – but worldwide, 80% of all sight loss is preventable, and the issue becomes access to healthcare.11