This is my Dad's story. In his own words:

I started losing my vision at the age of forty and was registered as blind ten years ago. I have a condition called Retinitis Pigmentosa that progressively narrows my field of vision and retards adaptation time. It also results in severe loss of acuity of vision and colour-blindness. But there is still a speck of light at the end of the tunnel although it is gradually fading.

I am on an inexorable journey from the sighted to the unsighted world. I have been on many journeys before, but this one is the most challenging – physically and mentally – that I have ever undertaken. It is not one which I embarked on willingly. It has unsettled my world – a world that is now significantly narrowed, and claustrophobic, devoid of colour, of aesthetics and of physical beauty. 

For someone who was a physics scholar with a photographic memory,  an athlete a portrait painter, a modeller, a collector, a DIY enthusiast, and a driver (!),the unsighted world feels infuriatingly limiting. Everything learned, has to be unlearned and then relearned, everything has to be de-constructed, and then put back together again in a different order. It is tempting to underestimate the challenges of moving from a visual to a tactile and aural way of being and doing.

Unexpectedly, my condition brings a consciousness of  diversity within the world of sight loss. I now know there ere many different ways of being blind. First, those who are partially sighted, albeit severely, and those who have no sight at all. There are those who lose their sight in later life, and those who are born without sight. And then, there are the different choices they make – there are the ‘canes’ and the ‘canines’.

As for me, I am forever trying to explain to people that I can see but that I cannot see, with the attendant danger of being suspected of suffering from a wilful delusion, a mental aberration. 

So what is my lived experience?

At a physical level, it means that I have to learn to walk again with confidence and pride, I have to stop shuffling and move with more grace and poise. I have to stop feeling uncomfortable in the company of others while working to reduce their discomfort. I have to stop being annoyed with my family for rearranging the home furniture. I have to learn to be more patient as I scour the kitchen floor, tile by tile, to find the pickled onion that has shot off my plate. I have to avoid talking to hat and coat stands at conferences. I have to drop all that cultural awareness stuff about maintaining eye contact. I have to start listening and communicating with my whole body. I have to concentrate on trivia that I have never had to concentrate on before – like not placing my cup of coffee too close to the edge of the table. Or to  recheck the light has been switched off and that the door has been locked. I have to run my hand down my arm to locate the other hand before it can reach out for the bowl of crisps or the glass of wine.

There are many pre-emptive measures I can take. I only buy black socks. I can section my wardrobe with dividers. I memorise the number of steps rather than relying on others to count them for me – people have different ways of counting them. In restaurants, I order food that can be picked up without the use of a fork and knife. I avoid getting using cash machines in public places. I look for lavatories with cubicles where I can sit down to have a pee – it is altogether less hazardous. 

At a metaphysical level, the adjustments are of a completely different order. My disability is now the means by which my very identity is conceived and constructed, both internally and externally. Sight loss is now as significant a determinant of my lifer as colour, culture and class have been. At times, it becomes the most significant factor that determines the quality of my life. 

In a non-inclusive environment, I am rendered more spectator than player, more of an observer than participant. In a patronising world, I am categorised more as a victim of discrimination than as a survivor of adversity. I need to remind myself to resist this disempowering perception of disability. I have to maintain some control in setting the rules of engagement and the boundaries across which discourse takes place and power is negotiated between the sighted and the unsighted world.

Because sight loss is not just a personal issue, it is a structural one. It is as much about the way in which society is put together as it is about personal endeavour and achievement. As a person with sight loss I cannot but conclude disability is  first and foremost as a fairness and justice issue. It is not my challenge, or your challenge, but our challenge.