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The long term impact of ROP blindness: Kevin Carey’s story

Kevin Carey discusses with our lead educator, Clare, the many ways his life has been impacted by ROP
CLARE: Kevin please can you start off by telling us about where you were born and how preterm you were and where you received neonatal care?
KEVIN: I was born in the first epidemic of retinopathy of prematurity in 1951 in the West Riding of Yorkshire. I was nine weeks premature 3 pounds 2 ounces (1417 grams), born on a Sunday morning, blue, put into a fruit bowl by the fire until the ambulance came to take me to Halifax General where I was immediately put into an incubator.
CLARE: And where you give oxygen to your knowledge.
KEVIN: Lots of, and was in hospital for almost a year. So I was in hospital for a long time until they wrapped me in olive oil and cotton wool. I’m not sure why? It’s perhaps as well in the sense that at the time, people did not believe that working-class parents like mine could rear blind children.
CLARE: And what did your parents think when they gave birth to a preterm baby?
KEVIN: My dad was fighting in Korea and my mother was obviously under the influence of her parents. Because I’d been conceived out of wedlock, my mother’s mother thought that my blindness was a punishment for their sin so we didn’t actually start out very well really.
CLARE: Did that impact on you and how your mother treated you?
KEVIN: I don’t think it did. I think it’s far more important in the context of my lifelong relationship with my mother that we didn’t bond, because I was in hospital for so long. And at 2 years and 5 months, I was sent to a residential boarding school for blind children because West Yorkshire Education Authority again didn’t think that working-class parents could rear blind children, so I was stuck in a boarding school - Two and a half years, so I never did really get a proper bond with my mother.
CLARE: And were you completely blind at that age or did you still have some vision?
KEVIN: My right eye was completely gone, I had residual vision in my left eye. Now the problem with discussing it is that I have never seen with normal vision. So I’m not very clear how my vision at the time compared with the vision of ordinary people not least because more than 80% of the children in my residential boarding school also had retinopathy of prematurity. And I knew I only had one eye, which was unusual, as opposed to the general preference for two. I knew that I had to go very close to read print and look at pictures.
So I looked at pictures at about a foot and a half; I read newspapers but I got my nose black; I watched television at about a metre; but my distance vision, I think, was good in outline but not in detail. Living in a mill town I could see mill chimneys from a very long way off. I could see the moors on the opposite side of the valley from where I lived. I could see the railway trains down in the valley, so I think I was all right for big things I wasn’t very good for detail of big things and small things… wasn’t going to…
I recognised people by clothing and context and voice rather by their faces, so it was a bit of a mixed bag but I did teach myself to read print but at that time people thought the print was like reading was like money, which is the more you use your eyes, that the less sight you had left, which was clearly stupid because they didn’t apply it to themselves.
CLARE: Did you get to know any sighted children or were all your friends also blind?
KEVIN: Boarding school made it very difficult. I was left at home days on end during school holidays and became a very great reader. I did walk alone in the park and on the moors but I knew no sighted children until I was mainstreamed at secondary school.
CLARE: You went to a school for any child for secondary, is that right?
KEVIN: Yeah, so in primary school, I was educated as if I were totally blind so it was Braille, it was raised line diagrams, it was modelling. As I said reading print was forbidden but I did it anyway. We were only allowed to watch television at weekends which is terrible deprivation because in the time that I had residual vision I spent all my time, of, really, going through art books, television. Anything I could get to see I got to see I mean I was greedy for visual images.
CLARE: Can you tell us a little bit about your occupation, what jobs you’ve had, and also a bit about your other interests and activities?
KEVIN: I thought I was going to lead a pretty normal life with my residual vision, but in 1975, I got acute glaucoma in my seeing eye, and it had to be enucleated in 1976. And as soon as the enucleation took place in the seeing eye, the blind eye, got extremely sore and that was taken out in (19)77. So suddenly I went from being quite functionally good with my vision to being totally blind, it took about a year and a half. So I started out doing what I thought I’d always do which is I started out as a journalist at the BBC.
I had to reconfigure my life and I went to work with Sightsavers International, which dealt with blind people because at the time there was no really well-paid job I could think of immediately, I couldn’t get back into journalism which is what I’d always planned to do. I couldn’t get from journalism into politics, which I’d always planned to do. So I worked in Sightsavers all over the world for 15 years, and then I became a freelance IT consultant. I write novels and poetry and plays and generally an arts travel and wine person.
CLARE: And Kevin, what, would you say would be the major impact of the loss of vision on your life?
KEVIN: Well the main impact if you look at my peer group at the end of my time at Cambridge, was that I have made in my lifetime less than 20% of what they’ve made. And I don’t think it’s because I’m less clever than my peers, it’s just that I had much less choice. Whatever I could do was less well-paid than my peers. So the first thing that it’s done, is it hasn’t altered the quality of my life, but it’s certainly altered the income of my life, which isn’t the same thing. I don’t think we should be coy about that, I think that’s quite important.
It cut down on my vocational choice; it cut down on my cultural experience; it probably made me much more faithful to my spouse than I otherwise might have been; ‘cause it limits everything, it just limits choice. I can’t even, between meetings, wander around the streets looking in shop-windows. I’m either sitting in the place where my meeting just finished or sitting in the place or I’m waiting for the next one. So serendipity is really a thing you miss. It, it’s a really bad thing to miss.
CLARE: Retinopathy of prematurity is now a condition which is affecting preterm babies throughout the world, and is causing a lot of blindness in Southeast Asia, in particular. And Africa is the region where the next epidemic of blindness is anticipated, so what would you see as being the priorities that really need to be addressed?
KEVIN: Well apart from understanding how you can minimise the amount of it that occurs, which is obviously the first thing you do. The really important thing, I think, and this is not just true of retinopathy of prematurity, but it’s true of a lot of people with low vision, and that is I don’t think low vision is very properly understood. In the 21st century, most of us are spending a huge amount of our time, operating inside a metre or maximum two metres, whether we’re looking at screens; whether we’re looking at mobile phones; a lot of our time is spent in very high definition information. And that’s against a background of ophthalmic tests, mostly designed for the agricultural age and heavy industry.
We actually need to know how children with very limited vision operate inside a metre so that we can get the best out of their residual vision for as long as possible, and that means not only static objects but we spend an awful lot of our time now, although we don’t think about it very carefully, we spend a lot of time with moving objects, because your screens aren’t standing still. From my experience I’d say that, I was very lucky that I was extremely rebellious and spend a lot of my time, A), learning to read print, and B) looking at loads and loads and loads of pictures and that’s made an immense difference to the rest of my life.
But if I had done as I was told I, I wouldn’t have all that visual memory that I’ve got which actually stood me in good stead.
CLARE: Kevin… Thank you very much indeed.

Kevin Carey was the Chair of the Royal National Institute of Blind People, the UK’s leading sight loss charity and the largest community of blind and partially sighted people. Amongst many other positions he is also founder and director of humanITy, an e-Inclusion charity, a novelist and published poet.

Kevin was born in the UK in 1951 during the first ROP epidemic. In the video on this step he discusses the many ways his life has been affected by his ROP blindness, from childhood to adulthood.

As you listen to the conversation, reflect on the available services and support mechanisms for parents, families and children with ROP in your setting. What else needs to be done to ensure that children with visual impairment from ROP have the best opportunities in life?

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Retinopathy of Prematurity: Practical Approaches to Prevent Blindness

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