My Ruby Blind Day
The Monday before last, 60 years ago, the queen ascended the throne; 200 years ago last week, Charles dickens was born. The nation (according to Radio 4 at least) is taking any opportunity to celebrate any anniversary we can, however significant or insignificant!! Well, inspired by such ecstasies, I’ve decided to celebrate the ruby anniversary of going blind! Hurrah! Tiddley-pom, Tarrum-tarrum! Ping!
So last Wednesday was my Ruby Blind day! Yes, 40 years ago last week, I went blind. 40 years ago on the 9th February 1972, the operation set to “save” my sight, failed. I stepped into a world that would, within 18 months fade to an opaque mistiness. Back then, immersed in the negativity of the age, I called this world “the grey bumbling world of the blind”. But doesn’t the world regard such events as tragic? What, and in one so young – they gasp. Not only was I only sixteen, but considered to be a promising painter, to boot. Positively heart-tugging, wouldn’t you say?
Ever since I REALISED that some people in the world couldn’t see, I’ve known that one of them one day might be me. Even before I understood this, other children had already started to treat me differently, for I was severely myopic. ”
Oi blindy” they would yell as I sought to find the safe path between them and their nastily threatening bouncy balls. Not only did I look different but I was lousy at most games.
For all those reasons and more, I was mocked, ostracised and sometimes bullied by other children. I had no language to explain what was different about me. All I knew was that I was different, and being different meant feeling inferior in some way.
Ok, so going blind wasn’t actually much fun. Since the summer before, I’d been putting up with various invasive and sometimes painful interventions, when I first became aware that the vision in my left eye had iridised into refracted crunchy shards of diffused light, of use neither to man nor beast. Each examination under general anaesthetic made me sick as a pig and more than that, loitering for hours with nothing to do in gloomy corridors other than sit with my eyes tight shut against the searing pain of the dilating eye drops was so boring, even if it did mean I got the day off school! Until the rebellion of the retina of my left eye precipitated a chain of medical interventions, during the previous summer, I had struggled to keep up at school. I had no way to articulate why I couldn’t see the same way others could and without being able to explain this, my needs were never considered. As soon as someone gave me a label (even though this was to shift and change as often as my ability to see the objects around me), my (till then ignored) need to move closer, to have things written bigger, to be given more time, were finally met. I was given permission to be visually impaired, even if they couldn’t understand just how little sight I ACTUALLY HAD left. As a result, my performance at school rapidly improved and within six months the prospect of collecting reasonable grades at ‘O’ level was for the first time in my academic career, looking possible.
My class mates soon got used to me wandering up and peering closely at things. I was able to explain my seeming rudeness as just not being able to see what was going on. Now that I had a name for it, I found new confidence to engage more with others instead of hiding my impairment behind a mask of aloof and lonely independence. At school, the other girls rallied round and were competently supportive. If they felt anything about what was happening to me, to my immense relief, no one mentioned it.
So when I finally prized my poor swollen eyelid open on that morning in February 1972 after the operation, what I saw was a vividly green sky, a frothy white candyfloss blob (which was a tree of some kind in blossom) Framed by a gently oscillating and muzzy window-frame. Darkness hadn’t so much descended upon me, rather the world had melted into indistinct patches of colour and shade. Everything was now tinted with yellow, its filter marooning reds, gilding whites and turning blues to green.
In the next 18 months, the world would turn from misty shapes aping reality into an obstinately black edge series of patches of dull coloured amorphous shapes, shot through with beadlets of shimmering light bearing no resemblance to what was in front of me. Darkness never descended totally. For some years to come, I was to be bothered by this strange visual tinnitus until I at length forgot to look anymore.
I went back to school and sat my mocks. As February turned into March, I watched the world around me change from the monochrome of hostile winter to the brilliance of benign spring. My painter’s eye feasted upon the shape of bare branches, dark against the vivid green sky as they frothed into creamy blossom and frilled into leaf. I watched the sun streaming low between the houses and splashing across the pavements. I stepped into the sunlight and it dazzled me , turning the world gold and black, immobilising me in its glare. If I had any consciousness that this would be the last Spring I ever saw, I never dwelled on it
On Easter Monday, I woke up to see that the poster of Bop Dylan had melted into a shifting patchwork of blacks, whites and greys. Within a few hours I had exchanged my bed for a hospital one. The pressure in my eye was out of control, and its very structure had buckled against the onslaught of haemorrhaging fluids. It hurt, but then in those days it always hurt. For five weeks, I lay flat on my back and fretted. My exams were but a few weeks away, the green spring was edging into a blindingly bright summer; I had lessons to attend, subjects to study AND PARTIES TO GO TO. Talking over my head, the doctors recommended I be registered as “blind”. Blind. That short sharp slap of a blunt and final word, flat almost, left me breathless. It sent shivers down my spine. I felt somehow exposed, pinned helplessly under a spotlight for all to see. The silent subject of my nightmares, the place of panic that I fell into when I woke in the night and couldn’t see a light, had arrived, although it wasn’t actually dark. I went back to school to sit my ‘O’ levels. Toting my bright,shiny,new long white cane, smartly dressed in my neat school uniform, I was a shocking sight. This was not meant to have happened and momentarily for everyone around me as well as for me, the world had turned upside-down. After all those years of living with a hidden visual impairment, I was suddenly the centre of attention. Utterly visible now, I could do nothing without someone having something to say about it. I had got used to being invisible. It was shocking to no longer be ignored. Before blindness descended, I had been afraid to look at people in case they saw that my eyes were different, I would put my head down and avoid eye contact. If people thought me rude so be it, rather that, than they discover I was different. Now, there was no choice and there was nowhere to hide either. IN the midst of my blindness, I had become over-visible.
40 years ago, there was no protection against discrimination. Disabled people were the problem, not society, the environment or anything else. My future prospects were immediately narrowed. Time and again I would be reminded that it was my fault if something was less easy for me to do because i was blind. Most insidiously, I wasn’t to expect to live anything other than an ordinary but restricted life.
I lasted one term in the sixth form at mainstream school before I was removed to Chorleywood College, a special if somewhat expensively exclusive school for blind girls. My blind survival skills were ruthlessly and effectively hot-housed over the next two years, so was my bolshie spirit – though that was perhaps an unintended consequence of the experience! . I was shocked to realise that even for my academically gifted and capable classmates , the future offered narrow prospects, the best of which was to find a sighted husband. Well as you can imagine, I wasn’t satisfied with that!
An insidious bi-product of confinement to special school was to determine me never to have anything ever again to do with disabled people, so eagerly did I want to escape the restrictions I felt being put on my dreams by association with them. During that time, isolated if surrounded by non-disabled friends, despite shining as a blind person in a sighted world, quietly I blamed myself for every piece of discrimination and exclusion that came my way. Only when I was finally able to share these experiences with other disabled people, did I learn that it wasn’t me at fault but society. The day I discovered this, I let go at last of the shame of being a blind person and began to celebrate this part of me as something positive.
Life’s path is strewn with obstacles, whoever you are. For a blind person there are many hazards. The pain of walking into a lamppost pales into insignificance compared with the pain of rejection because of other people’s narrow view of my capabilities as a blind person. Bruises mend, dents to self-esteem are harder to heal, but they are not incurable.
For 40 years I walked a path as a blind person, strewn with obstacles. I’ve climbed quite a lot of them. One or two have defeated me. I dreamed back then of going to art school and thought this lost to me. I went to art school – in fact I went to two!
Sometimes kettled by other people’s limiting beliefs; I have become formidably articulate in describing what is wrong and what needs to change. Belligerently persistent, if something gets in the way, I move heaven and earth to shift it. If it’s immovable, I find another way round. My experience of living as a blind person in a sighted world has taught me these vital skills.
Would I be quite so belligerent and tenacious had I not gone blind? I like to think that my experience of visual impairment has positively shaped the way I think and who I am. However, I also have a determinedly independent, resourceful and energetic frail 85 year old mother, and so resistance might also be in the genes.
Confined by other people’s discrimination, I fight back against restrictions. Ubiquitously notorious as my friend Polly describes me; I hope I stand as a positive role model for other disabled people. So I celebrate my ruby blind day; I look back to the journey taken with not a little pride. Over the last 40 years, I’ve sat down in front of parliament demanding discrimination legislation that has changed disabled people’s lives beyond recognition. I’ve worked from within local government to make them support disabled people to live independently, I’ve chained myself to buses so that disabled people could have freedom of movement, I’ve argued with police and law makers to get them to recognise the existence of disability hate crimes and make them do something about them. But what kind of world will we be living in when I celebrate my Golden or even my diamond blind day? Will we still have a welfare state or national health service that adequately supports those who need it? Will we continue to have (even though it is somewhat limited) protection from discrimination? Will my disabled comrades and I be still at large, fighting for our rights, changing the way the world is so that it is more inclusive of all people, or will we have been locked away in institutions because all support for independent living has been withdrawn? Well if I’ve got anything to do with it, we’ll be rising up, fuelled by our pride in who we are as disabled people.
Kirsten Hearn (14th February 2012)
