³ÉÈË¿ìÊÖ

Downloaded from www.bbc.co.uk/radio4

Ìý

THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT.Ìý BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE ³ÉÈË¿ìÊÖ CANNOT VOUCH FOR ITS COMPLETE ACCURACY.

Ìý

Ìý

IN TOUCH – Books on Blindness

TX:Ìý 18.07.2023Ìý 2040-2100

PRESENTER:Ìý ÌýÌýÌýÌýÌýÌýÌýÌý PETER WHITE

Ìý

PRODUCER:ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý BETH HEMMINGS

Ìý

Ìý

Ìý

White

Good evening.Ìý Books on blindness are a bit like buses – you don’t see one for ages, then they all come in at once.Ìý And two have just landed on the In Touch desk, which have particularly intrigued us, both because of their similarities and their differences.Ìý They’re both by authors who’ve been gradually losing their sight over a long period of time but, in particular, they’re also about people’s attitudes to blindness, both the attitudes of the public of blind people themselves.. of the cultural histories that have given rise to those attitudes.Ìý And, of course, we’re immediately in trouble because I’ve used the ‘blind’ but blind can mean so many things from having no sight at all or very little, to having a bit of trouble with your eyes but it can also evoke reactions ranging from horror at the very prospect of it, the belief that it can render you totally dependent on other people and the idea that it bestows almost magical powers of perception through other senses in compensation.Ìý Oh, and the authors – Selina Mills and Andrew Leland – are from either side of the Atlantic, so, maybe some cultural differences there as well.

Ìý

They’re both joining us.Ìý So, first of all, given that blindness can mean so many things, let’s establish your own personal situation.Ìý Selina, as far as sight is concerned, what’s your situation both historically and now?

Ìý

Mills

My historic situation is I was born blind in my right eye completely and then my left eye, which is my functioning eye, started losing perception and I went to a couple of specialists and they all said – well, it’s a sort of cataract at the back of the eye, it’s called post anterior cataract – I always thought sounded very grand.Ìý So, I’m sort of living in a middle bit, which is I’m definitely legally blind but I can see some things.

Ìý

White

Do you have a sense of – to put it bluntly – how much more sight you are likely to lose?

Ìý

Mills

It’s interesting, over years you realise it’s the incremental grain of sand.Ìý So, I wouldn’t notice if it changed tomorrow like a tiny bit but then in about three years’ time I’ll go – Oh yeah, I used to be able to see that.Ìý So, it’s a time issue, you sort of find yourself learning it over time.Ìý And you notice how much you’ve lost.

Ìý

White

Andrew, same question really – you have retinitis pigmentosa and there are quite a few versions of that as well but, for you, what does RP mean and in what way would you explain your sight situation?

Ìý

Leland

I think I have what doctors have suggested is a pretty classic version of RP, the sort of majority of people with RP, I think, have something similar to my experience which is as a teenager I had night blindness, so going to a movie theatre I was sort of baffled how everybody else handled it so effortlessly – finding their seats in the dark.Ìý And over the years that has incrementally declined and so night blindness sort of turned into leaving people hanging for high fives, you know, my peripheral field just gradually narrowed over the course of decades to the point where I crossed various milestones thinking – maybe it’s not safe to drive at night, maybe it’s not safe to drive during the day, I’m going to give my bike away – until finally, really like five or 10 years ago, was the period that I felt I could actually start to use the B word because I was like, maybe a white cane is in order here, I think a screen reader might be a good idea.Ìý And, like Selina, I find myself still with a foot in each world a little bit but increasingly feeling like it’s time to really adopt the mantle of blindness.Ìý Wherever I go I use a white cane, whenever I’m on my computer the screen reader is on and yet still I have about 5% of what a fully sighted person sees that I use – I use all the time.

Ìý

White

So, staying with you Andrew, why did you write the book?Ìý I mean, I suppose, the clue is in the book’s title The Country of the Blind: A Memoir at the End of Sight but facing up to it is one thing, writing a book, plunging into the Country of the Blind, is another.Ìý Why did you do it?

Ìý

Leland

Well, as I described that decision to start using a white cane, to start taking on some of these like more immediate trappings of blindness and particularly the white cane, just overnight transformed the way that people treated me, everyone from strangers on the street to my closest intimates – my wife and my mother.Ìý And that moved blindness from being a sort of abstract distant thing that I ought to be concerned about, to suddenly like in my face, something that I ought to figure out.Ìý And not just a practical problem but all of these sort of larger social problems as well.Ìý And so that got me writing because it felt both urgent and interesting.

Ìý

White

And when you say treating you differently, in what way, can you give a stark example of that?

Ìý

Leland

Sure, I mean, with some vision and using a white cane at the same time is a bizarre experience because you can sort of see how people look at the blind from the inside in a way.Ìý And I just saw these sometimes looks of sort of aversion – you know people looking away and steering away, you know, yanking their toddler out of the way when I’m still like a half a block away.Ìý Makes you feel like a pariah.Ìý So, I was walking around just with this feeling that people sometimes doubted me also, like I would feel guilty pulling out my phone and looking at it with magnification because it would be like – well, I’m a blind man, what am I doing using my eyes looking at my phone?Ìý And one time I was walking down the street in New York City and I kind of caught the eye of a guy giving me one of these sceptical looks, and then he actually said something, he was like – You can see.Ìý And it just felt like such a – such a puncturing but also, like vindicating, like okay, like it’s not just in my head, people really do have these attitudes towards me.

Ìý

Mills

Totally, yes.

Ìý

White

We’ll come back to the issue of fraud.Ìý You use a great phrase, Andrew, you say ‘too blind to be in the world of the sighted, to sighted to be in the world of the blind’.Ìý Is that where you were or is that where you are?

Ìý

Leland

You know it’s both, you know, it’s a work in progress. I think I had this idea that I would write the book and have the revelations and everything would be solved but the reality is, it’s a daily practice – it’s a moving target of my vision, as I lose more and more vision but also, just figuring out how to wear the mantle, you know, how to be blind really, is the job.Ìý And so, I still play games with myself in my head, I’m like – well, you should really turn your screen reader back on your phone, like I don’t know why you’re straining your eyes to do this – and I just like play these mind games with myself but they’re actually important in terms of figuring out how to inhabit this life.

Ìý

White

And Selina, I hear the recognition in your reaction.Ìý Your title Life Unseen: A Story of Blindness suggests a history of blindness but it’s much more than that, isn’t it?Ìý It’s a mixture of culture, history and just what it’s like to be losing your sight.

Ìý

Mills

I mean literally when I hear Andrew I’m just like – Oh yes, yes, oh god, I don’t have to write my book, he can just do it.Ìý But it’s so true, I call it the Mosses effect, I pull my cane out and literally it’s like the splitting of the seas in Marks & Spencer’s, everyone’s like – oh my god, she’s going to hit me with her cane.

Ìý

White

You see some of us who can’t see think that’s brilliant.

Ìý

Mills

Well, yes, that is true but, on the other hand, it’s the horror of the mothers and little girls going – what’s that ball there, Mummy – and she says – Don’t stare at the woman darling.Ìý And you get that a lot.Ìý So, I think what I was trying to do was I was trying to explain why we get these reactions and I wanted to think about why we did that, how we had learnt this behaviour.Ìý And so that’s why I mix it with history.Ìý So, I was trying to explain the past filtering into my shopping in M&S.

Ìý

White

I want to stay with that idea because, you know, you’re both aware of the very many positive things about being blind but is it really so surprising that people react to blindness the way that you’ve just described?Ìý I mean it’s all very well to talk about it as just an attribute like a personality characteristic or a hair colour but to anyone facing the loss of sight that’s not how it looks at all, not at the beginning anyway.

Ìý

Mills

I think that’s a really good question because I’m not trying to say this is like this wonderful joyous, let’s all go blind but what I am saying is how we have, as a culture and a society in the West at least, it has become stigmatised, it has become objectified and therefore I think these books are really important because what they’re saying is – look, we can look at it in many ways, it’s not just this sort of mellow drama.Ìý And, of course, it’s frightening and, of course, who am I to speak on behalf of anyone, I can only describe my personal journey.Ìý So, what I am trying to argue and I think Andrew is too, is how do we get there, how do we get to that point of treating people weirdly and strangely.

Ìý

White

And you give some pretty horrific examples of that in Greek mythology, in Medieval times, in Biblical examples, it’s been a theme right down the ages, hasn’t it?

Ìý

Mills

And – yeah – so Medieval farse, let’s take a blind man, put him in the middle of your church square and give him a stick and tell him to find a pig – that’s really funny, apparently.Ìý But then you get like a daytime talk show, like in America there’s a show called Ellen, I think it’s now stopped, and she made people put on eye masks which had eyes on the masks and they all had to crawl around on the floor to find the prize, which was a car or a holiday and the audience thought that was hilarious.Ìý And I was thinking – okay, where does that sort of pantomime relationship to blindness come from?Ìý Oh look, Medieval France.

Ìý

White

I said we might have some cultural differences; do you recognise that Andrew – American daytime television trope?

Ìý

Leland

Oh yeah, the disability simulation thing is pretty common.Ìý One of the – the largest charity that raises money for eye research, to prevent blindness, is the Foundation Fighting Blindness and they were trying to piggyback on the ALS ice bucket challenge and they created a campaign called the How I See It Challenge where they printed up sleep masks, sleep shades, and you were supposed to put them on and record a video of yourself trying to do something without vision.Ìý And, of course, if you have no blindness training and you throw on a sleep mask, it’s scary and you’re knocking things over and some people were trying to take care of their kids or use the kitchen, they were things that you really need training to do as a blind person.Ìý And it just exacerbates the fear of blindness.Ìý And I think it’s a problem to try to reduce blindness to a feeling of a sighted person terrified in two minutes versus what most blind people experience as a years long process of adjustment.

Ìý

White

But, on the other hand, when you’re thinking of people who face the loss of sight, they don’t see those reassuring things like it’s just an attribute, what they see is – I won’t be able to drive, I might not be able to see my family’s faces, I won’t be able to read.Ìý And the figures still suggest, on both sides of the Atlantic, that the likelihood is that I won’t be able to work.Ìý So, it’s not really surprising, is it, that people take it pretty damn seriously.

Ìý

Leland

Yeah, this is something that I encountered in my research where I really was interested in like the National Federation for the Blind, which is the largest blindness consumer group here in the US and some of the battles that they’ve fought because I found them really illuminating about these attitudes towards blindness, both sighted people looking at blindness and also blind people.Ìý And there’s a guy named Father Thomas J Carroll who was an important figure in developing blindness training techniques, he worked at some of the early veterans’ centres for World War 2 veterans coming home who were blinded, and he wrote a book about blindness and the first line is: ‘Blindness is a dying.Ìý And Kenneth Jernigan, who was one of the leaders of the NFB in the ‘60s and ‘70s, he hit back hard and he said this point that, Peter, you’re bringing up that blindness is just a neutral attribute, it’s a neutral characteristic and it causes some inconveniences but really once you figure out the tools you need, it’s not so bad.Ìý And my perspective on it – I think you’re right, that for somebody who’s losing their sight after living decades or their whole like with sight, you have to acknowledge that grieving process and there is like a death component to it, as horrifying as that sounds, because Jernigan’s point was like – I’m not dead, there’s no grieving that needs to happen, I’m just a happy person.Ìý But I think the reality is for someone in my position and perhaps in Selina’s position like there is a level of grieving that has to be done.Ìý But at the same time, I think it’s important, like all grief, that it’s not something that you’d remain in, you grieve in order to move on.Ìý And then you can arrive at that neutral characteristic, until perhaps you experience depression or discrimination and the characteristic is not neutral because the world perceives it that way but then you can push back against it.Ìý So, these are the sort of paradoxes and dichotomies that I find myself navigating in the book but also, in my day-to-day life.

Ìý

White

One of the things that you both stress in your position of being half way between sighted and blind, and Andrew’s already mentioned it, is your vulnerability to accusations of fraud.Ìý Selina, Andrew’s given his example of somebody just seeing him walking with a reasonable amount of confidence and saying – You can see – you were reduced, I think, initially, to impotent and then very potent rage by one incident…

Ìý

Mills

I think the word is incandescent.

Ìý

White

Yeah, what happened?

Ìý

Mills

So, I was coming off a train and I’d done this trip many times, so I knew the platform, I knew exactly where I was.Ìý And got to the gate and the guard said – Can I see your disability card?Ìý And he started telling me off and that I was faking it and then he said – I saw you, you were fine, you were breezy walking down the platform, you don’t need this.Ìý So, I’m very patient and I go – Yes, I understand it might not look that but I’m really well trained.Ìý And it’s sort of like a switch, I was polite three times – Yes, I understand, no they don’t give this disability pass to anybody, I promise you, they have… you know, I was really being thoughtful.Ìý And then he started saying, you know, people like you… and without swearing, all I can say is there were some words used and also I’ve pulled out my false eye and I said – Yeah, I’m faking it, this is what I’m faking.Ìý And I threw it sort of right in front of his face and he was so obviously shocked and he said – No, no, please come through, come through.Ìý And I was so shocked that he could – to not accept what I was saying and also, like put all his prejudices on to me.

Ìý

White

Another thing that comes over in both your books is the uncertainty of diagnosis and what that does to you.Ìý Andrew, you have an illustration where good news can be bad news, you know, this is about the rate at which you were losing your sight.

Ìý

Leland

Yeah, so, I mean, I was diagnosed as a teenager and the doctor told me it would be a very gradual decline until middle age, when it would fall off a cliff.Ìý I’m in my early 40s now.Ìý After moving to Massachusetts, I was re-establishing care and there’s this sort of medical fellow very breezily disabused me of this and he said – Oh, actually, RP doesn’t work like that, it’s a logarithmic linear…. I had no idea what he was talking about but basically was saying – the rate of decline doesn’t accelerate, you’re not going to fall off a cliff.Ìý This was very good news and I was delighted but then, at the same time, I was still experiencing vision loss in the months after that, so there was a way in which their very scientific explanation – oh you’re not actually going more quickly than you are.Ìý In the subjective experience of the patient, of the person who’s losing sight, it can still feel very much like you’re going blind quickly.

Ìý

White

But there’s a great punchline to this story, Andrew, which you haven’t used.Ìý Tell me how your wife reacted when you told her that you were actually losing your sight more slowly than you’d been told.

Ìý

Leland

Yeah, there goes your book, she said, because I’m sitting there writing this book about going blind and then they’re suddenly telling me – like, well, actually, you know, might be 10 years, 20 years… you know, and yeah, there goes your book.Ìý And this is the complicated thing about my book’s subtitle – A Memoir at the End of Sight – and I really kind of went into a deep philosophical fugue a little bit, like, what is the end of the sight, does it have to be like the final light leaves the room or am I there now, you know, I’m already doing all these blind things.Ìý The thing I found in myself and in the stories of lots of other people in my position is that it really encourages denial and this sort of clinging to vision until the last possible moment.Ìý Writing the book gave me a really strong impression that that way disaster lay.Ìý I would be doing myself such a disservice to try to cling to sight, even though it has its advantages and there are people in my life who would sort of encourage me to continue to do things that way.Ìý And so, just like in my life, I might push myself to write more, to become a better writer or to go to the gym and to keep my body fit, you know, there’s this new element in my life now where I practise braille and I learn the intricacies of my screen reader and I push myself to travel with my cane and it’s become another part of my life.Ìý I’m patting myself on the back as I practise my braille every night.Ìý And the pay off is huge, I mean the pay off in terms of my comfort with blindness but also, just my productivity as a blind person, I know that it’s the right decision.

Ìý

White

°Â±ð±ô±ô…

Ìý

Mills

So, it’s an ownership, isn’t it, it’s all about ownership.

Ìý

Leland

Yes, absolutely.

Ìý

White

Well, Selina Mills, Andrew Leland, thank you both very much.Ìý We only got through a smidgeon of the things that are contained in the books, you can get an audio copy of the Country of the Blind by Andrew Leland on Audible and Selina’s book Life Unseen: A Story of Blindness is available in large print from Bloomsbury Publishing, there’s an audio version, as well, you can find that wherever you get your podcasts and will soon also be available on Audible.

Ìý

We’d love your views about our discussion and your own experiences.Ìý We’re also planning a programme about delays in getting the services that especially newly blind people need.Ìý I’m talking about things like registering as blind, getting your certification of visual impairment certificate so that you can get, for example, benefits that you’re entitled to, an assessment of your needs and the delivery of those services.Ìý You can email intouch@bbc.co.uk, you can leave a voice message on 0161 8361338 and there’s more information on our website, if you can manage to get to it, that’s bbc.co.uk/intouch.Ìý

Ìý

One other thing, you’ll know that here on In Touch we’ve been following the issue of the closure of ticket offices.Ìý Well now there is a public consultation run by Transport Focus and London Travel Watch, it ends on Wednesday 26th July, that’s Wednesday week, you can submit your responses via their websites or you can call 0300 123 2350.Ìý More information on that is also on our website.

Ìý

From me, Peter White, our guests Selina Mills and Andrew Leland, producer Beth Hemmings and studio manager Simon Highfield, goodbye.

Ìý