Living with an invisible disability

Note – this post is being re-shared to explain why I campaign for libraries, and why I am standing for election as a CILIP Trustee. You can find more information and voting papers here.

Ten years ago I was on holiday in Cornwall with my family and I was sitting on a grassy slope enjoying the sunshine and the view, when I noticed a very small black spot in my vision. I was tired and the sun was bright and so I dismissed it as eye strain. Two days later the spot was still there, but had now been joined by another one. I called my doctor and got an appointment as I thought it might be an eye infection, or maybe a scratch caused by sand blown around on windy Cornish beaches. I wasn’t worried.

My doctor was. He sent me immediately to the eye emergency clinic for an examination. They were worried too. They could see holes in my retinas and they sent me for emergency treatment. The edges of the tears were burnt with a laser to stop them from spreading any further. They can’t be fixed. After this I was sent to Moorfields so that they could explain my condition to me. All of this happened in a two week period and so I was swept along without much time to take it all in. I learnt the name of my condition (lattice degeneration) and how rare my type is. I was told that there are many types, and mine isn’t one of the good ones. I was told that my retinas were like “wet tissue”, or “over stretched balloons”, or “stockings with ladders” – my eyes were compared to a few other odd things too. I was told that it’s untreatable, and that one day it will leave me blind, or maybe blind in just one eye if I’m “lucky”. I was told that could be in ten years, or maybe twenty, or it could be tomorrow. I was told that my vision would get worse, but might plateau, or might stabilise and then get worse again. I was told that it probably wouldn’t make much difference unless I “read a lot” (it’s my job, I read around 100 books a year). I was told I had the eyes of an 80 year old. I was told I’d “probably get used to it”.

Of course even though I was told all of this, I didn’t really hear it. In fact I left various doctor’s rooms hearing only one word – blind. That was all I knew – that I was going blind.

It wasn’t the doctor who gave me the information I needed to carry on, it was the library. Thanks to the library I was able to find everything from medical text books, to advice books, to leaflets, to helplines. I found support and information and I was able to set not only my fears to rest, but the fears of my family.

It’s been ten years, and my vision has at times deteriorated, and then stabilised again. My library and my librarian have both been there for me. Finding new information and keeping me supported. There really isn’t anything else in my community that can do this for me. Last year my vision took a bit of a downturn and I had new symptoms to deal with. I now find that my peripheral vision is almost nonexistent, and focussing takes so long that moving or scrolling displays are almost impossible to read. Where stairs do not have clearly marked edges I have to take great care as they can blur into one, this means that many escalators resemble a silver-grey river which can be quite alarming. Artificial light can cause eye strain that often blurs out the vision in one or both of my eyes, and can sometimes cause a visual migraine that makes me almost blind for a few hours. Those two holes left me with blind spots, and my general vision is rather like looking through a dirty net curtain.

I have adjusted (although I get very angry at organisations such as train companies who seem to refuse to understand disability awareness guidelines which would make travel much easier) There is no label to show the public my kind of disability. Thanks to many changes in legislation I’m not entitled to any help. I’m not visually impaired enough to qualify for registration yet. I don’t get a badge, or a stick, and no one can tell I have it. People get angry behind me on public transport when I have to stop and stare at steps, or doors. They don’t give me their seats even when I’m holding on with both hands because my peripheral vision is so poor that I can’t tell what’s next to me, or because my balance is affected by my inability to focus. I am very patient with other people who tut when I can’t see that my ticket is the wrong one, or that it’s the wrong way up, or when I have to stop for a few seconds longer than they need. It’s not their fault that they can’t see my disability, as beyond an odd tilting of my head to get objects into the clearer bits of my field of vision, they can’t know what’s wrong. Being angry with them doesn’t help me.

To give you an idea of what my vision is like, I have prepared this image. I have always taken photographs, and discovering that I have a visual impairment might confuse some people as to how I do this. I do it by learning the camera’s capabilities and then trusting it. Mostly when I’m taking photos I actually can’t see what I’m taking until I look at it on the computer screen.

This is a photograph I took recently.   

And this is a a fair approximation of what I actually see. 

I take photos of everything because it’s really the only way I can see what the view actually looks like.

One day I won’t even be able to do that. This scares me because the way the UK is going I am afraid that there will not be a care network in place to support me. I am afraid that the burden of care will fall entirely on my family, and that’s not fair. I’m a hugely independent person and it’s not the thought of being blind that scares me, it’s the thought of being a burden – of being entirely dependent on the people I love. I need something else in my community that will support my needs and keep me going. I need something to keep me sane and to allow me to hang on to my independence. I need a library, and I need a librarian. I need to know that I will have a librarian who knows me and understands me. Someone who can hold onto audio books for me, and read the back of the boxes. Someone I can trust with my private information who can look things up for me. I need a safe and reliable place that I can get to in my community where I can turn to someone for help. I need somewhere local where I can have access to materials, and information in different formats. The thought of not having that really scares me.

When we talk about all of the things that libraries do for people, we often forget all of the things that they might one day do for us. You possibly feel that you don’t need your library now, but one day you might. I hope for all of our sakes that it’s still there when you do. I know that librarians are discreetly doing this sort of supportive work in their communities every single day. I know this because for decades I did it myself for other people.

I hope you won’t ever need libraries and librarians for the same reasons I will, but just in case let’s all stand up for our right to keep them right where they belong – in the hearts of our communities.

Dawn Finch

Past President Chartered Institute of Library and Information Professionals (CILIP)

Children’s author and librarian

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3 thoughts on “Living with an invisible disability

  1. J. Austin says:

    Thank you for your magnificent story. My own vision is not much different in its complexity and potential for (sudden) blindness – a doctor I must see calls it the “canary in the coal mine” indicating multiple systems unseen within me are about to fail and must be dreadfully medicated. This shapes how much I can do working in these U.S. public libraries I love. Let’s read while we can and give able assistance to all who need public libraries, veterans hospital libraries, and other patient libraries. It’s time for me to walk now, a little like Harold Fry, while keeping an eye on the shore for that large alligator not far enough away across the grass!

  2. Hi, I hope you know about the Royal National Institute of Blind People Library! http://www.rnib.org.uk/books?gclid=CNGt9eLsm8sCFYlcfgod0FMDYQ

    • Dawn Finch says:

      I’m a librarian, I know it very well. I’ve supported both children and adults with their help. However my condition doesn’t register me blind and so I’m not entitled to use their services.

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