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IN TOUCH – Three stories on accepting blindness

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TX:Ìý 23.04.2019Ìý 2040-2100

PRESENTER:Ìý ÌýÌýÌýÌýÌýÌýÌýÌý PETER WHITE

PRODUCER:Ìý ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý LEE KUMUTAT

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White

Good evening.Ìý The many ways of adjusting to blindness.Ìý Tonight, we’ll look at only three: acquiring new skills:

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As close as I can get to the work and what I’m doing is riding the bevel of the tool.

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White

And tough love:

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You get dropped somewhere, you don’t know where, they will bring you in a van and you might go in circles, you might be driven around the same place five times just to disorient you and you will have to find your way back.

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White

Or turning to your creative side:

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I promised, just four years ago, when blindness certified, through poetry I’d share my tales of us far and wide, so no one ever need to feel alone with losing sight, explain their thoughts to loved ones through these verses that I write.

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White

Well, that’s one of our guests tonight – Dave Steele from Manchester, performing live there.Ìý And Dave, with us in the studio, you were a performer, although not a poet, before you began to lose your sight.Ìý Just tell us a bit about your background.

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Steele

Yeah that’s right.Ìý So, for years, before I started losing my sight, I worked as a professional singer.Ìý Started off the old route, as a lot of people used to do, I was a bluecoat at Pontins, the holidays parks, back when I was 18, in the Isle of Wight.Ìý

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White

But when you lost or began to lose your sight, that’s an inherited condition, isn’t it?

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Steele

Yeah that’s right.Ìý So, Retinitis Pigmentosa, for those that don’t know, is one of the most common sort of hereditary eye conditions.Ìý It’s actually a group of eye conditions, so there’s lots of different ways it’s affected.Ìý And it comes from my mum’s side, my particular gene type, so there’s like a one in two chance of every time a child’s born of them developing the condition.

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White

And times have been pretty tough for you over that period?

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Steele

Yeah, the first year especially, the first sort of year to 18 months, was pretty difficult, went through a lot of the things that most people go through with vision loss, loss of independence, lost my job within the first week because it involved driving.Ìý From that we struggled as a family to afford to pay the rent from where we were living, we ended up losing our house, fed our kids on food parcels for a little while.Ìý Things like Personal Independence Payment, which I know a lot of people sort of struggled with, that was a nine-month waiting list.Ìý So, yeah, it was pretty tough the first year.

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White

Is it fair to say the poetry was a bit of a turning point?

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Steele

It was a massive turning point for me.Ìý Obviously, I’d worked as a singer before and the way it came about was through social media, on the advice of my sister, who also has RP, I joined a few of the social media groups and got asked to perform at an event for people with RP and Usher Syndrome, which is deaf blindness, in Newcastle.Ìý The night before performing at this event I was in bed going over songs and ideas of songs to perform and I thought it would be a great idea if I could take a song that everyone knew but change the words.Ìý So, I chose Stand by Me by Benny King, because I like the opening line – When the night is come and the land is dark and the moon is the only light we’ll see – because that was like night blindness.Ìý So, I rewrote the lyrics to that.Ìý Performed it the following day and it had a really emotional response, put it on You Tube and started to get messages from all over the world and that’s where the poetry started.

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White

Okay.Ìý Stay there Dave, we’ll come back to some of this.Ìý But it’s always dangerous to generalise about how differently other countries do things but one thing we can say about the United States is the very hands on approach of its blind run organisations, such as the NFB or National Federation of the Blind.Ìý Now they run a number of residential courses teaching life skills with a strong emphasis on self-sufficiency.Ìý And what caught our attention on social media was a reference to the culmination of a nine-month long course in its Colorado centre with something called the drop.Ìý Well Danielle Montour is our second guest, joining us, oddly, from Manchester but it’s Manchester, New Hampshire.

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Danielle, you’ve recently experienced the drop, just describe it for us.

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Montour

Yes.Ìý You go into the programme and you sort of are built up with weeks and weeks and months and months of travel training.Ìý So, you learn all a bunch of things to build up to this but what eventually happens is you get dropped in the Denver metro area somewhere, you don’t know where, they will literally bring you in a van and you might go in circles, you might be driven around the same place five times just to disorient you but you will be disoriented and you will be dropped with nothing but your cane and a flip phone and you will have to find your back by only asking one question to get back to the centre.

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White

So, what happened to you, what was your version of the drop?

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Montour

So, I was dropped in the middle of a park in Denver and there’s a moment on these drops, you just kind of stand there and you’re hit with the fact that you don’t know where you are and you start to take stuff in.Ìý So, in those first few moments all I hear is a car kind of easing by on one side of me, a bike kind of going by on another, I hear a bird chirping off somewhere – I’m going, okay, there’s no cars here, this is not a street, this is not – I’m not in any place…

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White

I mean that’s what I mean – but parks are difficult places to get out of because you haven’t got walls, you haven’t got sides, you don’t know where the gates are.Ìý How did you get out of the park?

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Montour

There comes a point where you just have to pick a direction and go okay, I hope I’m going the right way.Ìý I heard someone walking with a stroller in the park, so I decided that I would follow where they were going to see if I could – because if they were going there maybe I would want to go there…

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White

But there are stringent rules about what you’re allowed to do and what you’re allowed to ask.

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Montour

Right.Ìý So, you’re only to ask one question ever, during the whole route, that’s all you’re allowed to ask.Ìý You’re given a flip phone and you give your phone to the people at the centre, so that you can’t call – you can’t use GPS, you can’t look at the nearest bus stop, you can’t do any of that – you literally just have a flip phone for emergencies and that is it.

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White

I mean I’m reasonably confident now but that would be terrifying, you’re what – 22 are you, yeah, it must have been fairly scary?

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Montour

It was very, very scary. ÌýNow unlike Dave you’ve been totally blind from childhood, why did you go on this course?

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Montour

Really, I just didn’t have all of the skills, I didn’t know a lot of blind people growing up, I really had not met many of them at all until I was in late elementary school.Ìý And I really just – my parents were not really educated on blindness, I wasn’t educated really on what blind people could do.Ìý They were terrified of having me cook, for example, because they didn’t know how to teach a blind person how to cook and I didn’t know any blind people who cooked so I couldn’t tell them differently.

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White

And what were your thoughts when you heard you would have to do this – the drop?

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Montour

I was one of those people who was kind of like – how can you expect anybody to travel without their phones, how is that even safe, how would you send out somebody without their phone and alone and you know this and that.Ìý So, it was a mix of indignation and honestly just kind of terror at the prospect of having to do it.

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White

And I think you had what you described to me as travel anxiety anyway.

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Montour

I did, yeah, I experienced assault on other instances of travelling as a young woman by myself, so it was definitely something of a scare for me to be willing to get lost and allow myself to be lost and find my way back on my own.Ìý The way for me to get over things is to go through them.Ìý And so, I really needed – it was kind of a way of me facing it head on and kind of acknowledging that this is a problem that I’ve been struggling with and that this is the way to really get through it and conquer it and conquer part of myself too, which is kind of cool.

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White

Let me come back to Dave Steele, who’s sitting here listening to that, what formal training have you had?

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Steele

Well formal training would be when I got my guide dog for example, I did a residential course.Ìý I did cane training before that with Guide Dogs.

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White

How long was your residential course?

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Steele

So, the residential course I did was 11 days…

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White

Which is not – this course is nine months, that Danielle does…

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Montour

Wow.

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White

I suppose, Dave, what I really – how well prepared do you think you were for what’s happened to you?

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Steele

I don’t think I was, to be honest.Ìý Like a lot of people with Retinitis Pigmentosa, because it’s such a gradual loss over a long period of time, I was in denial for years.Ìý I had the early onset of RP when I was probably in my early 20s, of struggling from light to dark places, that feeling when a normal sighted person will walk from the outside sunshine into maybe like a cinema and it takes a couple of seconds for your eyes to adjust, I wasn’t adjusting.Ìý But I just sort of put it to the back of my mind and got on with things.

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White

Sort of thought it would never happen, even though you knew it might.

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Steele

Yeah, well with RP, I was always told, I wouldn’t be affected by it really until I was an old man, so I just put it to the back of my mind.Ìý It wasn’t until five years ago, when I went for a routine eye test, that I was told oh no, it’s really here now.

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White

So, we’ve had the creative approach, the tough love approach and Chris Fisher’s found a third way, using going back to what you knew when you could see.Ìý Chris was always someone of a practical turn of mind, so when he lost his sight, he began to think of things he could still do with his hands, result – Chris Fisher is now a commercially viable wood turner.Ìý

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Our reporter, Tom Walker, has been to talk to him and find out how he does his new job.

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Fisher

When I was sighted, I was very, very acted, very gung-ho, I had a huge passion for motorcycling and I owned many high-performance Japanese motorcycles and a couple of Ducatis.Ìý I was a student pilot, so I was working towards my PPL before I went blind.Ìý I love working with my hands and I was in the automotive industry and did vehicle restoration and the last place I worked was for BMW.Ìý

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Walker

And in, what, October 2008 you lost your sight or at least the process of losing your sight began.

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Fisher

Yes, I woke up one morning, Tom, with really blurred vision and didn’t know what was causing it, I was hoping that it would clear up after an hour or two, it didn’t.Ìý At first, they thought it could have been early onset of macular degeneration and a couple of other conditions but it transpired that it was toxoplasmosis that caused irreversible damage to my retinas.

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Okay, Tom, so pull down the face shield there now, that’s going to provide lots of protection.Ìý I’m just positioning the tool rest now.Ìý As close as I can get to the work and what I’m doing is riding the bevel of the tool.Ìý It’s not cutting it, so as I lift the handle up the sound changes and we’re taking cuts now, nice and gentle.

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The day that I was diagnosed, I don’t mind, I was crying because you lose so much instantly, the thought that I’d never be able to ride a motorcycle again or get my pilot’s licence was hard to take and the fact that you know I couldn’t see my wife and son and you can’t even see nature and beautiful things anymore, it’s really hard.Ìý Everything that the sighted community take for granted we have to work very hard to try and get our independence back.Ìý So, yeah, it was a struggle but I’m glad I persevered and got to where I am.

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So, that has put in – just that little noise there was me pushing the tool in gently and it’s left a score line.Ìý So, that is now a point of reference for the handle, so I can do another one…

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The reason I got into wood turning is I’m a huge horror film fan and I wanted a nice vampire stake as a piece of horror art.Ìý I didn’t just want to get a sharp knife and whittle a piece of wood, I wanted something a bit more Hollywood, something a bit more stylised.Ìý So, I listened to You Tube for 600 hours, which equates to five or six hours a day for six months, something daft like that.Ìý Assimilated as much information as I could about tools and techniques, health and safety, finishing.Ìý Purchased a lathe, got some tools, got some wood and taught myself.

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I’m just going to operate my talking tape measure…

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Talking tape measure

Eleven and three quarter inches.

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Walker

What adaptations have you made to make this safe and accessible?

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Fisher

Well I rely heavily on smart technology and employ phones and talking tape measures and one of my lathes has got a foot switch.Ìý Everything in the workshop has a place, so I’ve built a workshop for me by me, so really you have to consider being blind in everything you do.

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Walker

To what extent do you think people, customers, come to you because they’re kind of quite interested in the fact that you’re a blind wood turner?

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Fisher

I think that has a part to play.Ìý I don’t want too many customers really just taking a pity purchase, if we can say that, I’d rather people say that is an amazing piece of work could you make me one.

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Walker

What has being a wood turner done for you psychologically, spiritually in your life?

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Fisher

It’s given me such a great sense of achievement, it’s made me part of a world wide community of other wood turners and makers from all over the world.Ìý It’s given me a source of income.

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Walker

And has it helped you to cope with the loss of your sight?

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Fisher

Yeah, it is great therapy because when you’re in your workshop and you’re concentrating on a piece of work you truly are in the zone, nothing else matters, you’re in the moment, you’re being creative, you’re expressing yourself.Ìý I’m in here with the radio on and a cup of tea and I’ve got the lathe on and it really is a time for me to shine.

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White

Chris Fisher talking with Tom Walker.

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Dave Steele, the message seemed to be, it’s all about using what you’ve got and you told us, you made a very conscious decision to do this and perhaps to inspire people.Ìý Is that your job – I mean are you doing it for you or are you doing it for them or doesn’t it matter?

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Steele

I suppose it doesn’t matter, I mean, you know, you speak to any songwriter they’re doing it – they’re writing for the listener or they’re writing for themselves – probably a bit of both.Ìý When I started to lose my sight we lost a lot of things and I lost a lot of confidence and pride but writing the poetry and helping people through that poetry gave me my purpose back.Ìý So, yeah, I feel good about helping people.

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White

Danielle, what’s your thought about this?Ìý I’ve been to National Federation of the Blind conferences, the ones you have in the States, and they rather go sometimes for the inspirational approach, I just wonder how you feel about this?

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Montour

It depends on what you’re inspiring them to do.Ìý And at least, for me, it depends on what people are saying I’m inspiring them with.Ìý Look part of me says if I’m inspiring somebody by doing what I do and being who I am that’s a cool thing.Ìý But at the same time, it can have the sort of cognisant connotation too, like oh you’re so inspiring, you’re walking in the grocery store.Ìý Okay, but you’re sighted and you’re doing it just fine, why are you looking at me like I’m – like I’m learning how to toddle.Ìý Now if a blind person comes up to me, and I’ve had this where blind people have been like wow, your training sounds really great or I’m really – like your story inspires me to want to go this, that’s a completely different ballgame to me because you’re going at it differently, you’re not – they’re genuinely encouraged to do something.

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Steele

I think confronting your fears, your biggest fears and challenges, is inspirational…

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Montour

I agree, for anybody.

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Steele

… in any walk of life.Ìý Yeah, absolutely.

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White

Let me just ask you both one quite question.Ìý Danielle first.Ìý How accepting are you of your visual impairment now?

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Montour

So, I am pretty – you know – it’s been my life forever.Ìý Just a quick background.Ìý I was born with bilateral retinal blastoma, which is a form of eye cancer. Similar to Dave mine is the dominant genetic thing, so I have a 50% chance of passing it to any kids I have.Ìý As of right now, oddly enough, my partner also had retinal blastoma, so we’re actually two-thirds chance now, so it’s a 67% chance to pass.Ìý Most of the time, I’m pretty good with my blindness, I’ve known it forever, I haven’t really known anything different but I’d be lying if there were times when I didn’t wish I could see my family or even myself, I’ve had a lot of body image issues due to not being able to see my own face or my own body and not being able to see what people look like around me or body language.Ìý So, I’d be lying if I said that I was always okay with it and always happy with who I was.

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White

And Dave, you said that you’d been in a state of denial about it, how are you now?

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Steele

Back and forward, a lot better than I was and the poetry has sort of helped me to get there and the support of other people and my family and my wife especially.Ìý But I’m at the last stages of my sight now, I’ve got less than five degrees of my vision left and it’s declining very rapidly.Ìý So, you are almost constantly grieving for something that you haven’t lost yet but you’re also reliant on it because you’ve still got that little pocket of central vision and your vision doesn’t work.Ìý So, it’s like having to use something that’s actually broken, which is the toughest part.Ìý But also, going back to what Danielle was saying there, the hardest part for me and also is the thing that inspires me the most to do what I do is because of the children side of things – there’s a one in two chance that my children will develop it when they’re older and I want to show them that there’s so many things you can still can do despite vision loss.

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White

Dave Steele, Danielle Montour, thank you both very much indeed.Ìý And that’s it for tonight.Ìý Please call our dedicated In Touch phone line to leave your thoughts and comments.Ìý That number:Ìý 0161 8361338 – 1338 – or email us at intouch@bbc.co.uk.Ìý So, from me, Peter White, producer Lee Kumutat and the team, goodbye.Ìý But Dave Steele read us out with one more piece of poetry.

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Steele

So, I’m going to read a poem that was written for my son, there’s a one in two that he could go blind when he’s older.Ìý This is called Shift this Cloud.

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I carry heavy guilt through sleepless nights and secret tears

I wait to know the answer, ticking clock of RP’s fears

But if in future blindness does come knocking at your door

I’ll lead you by example, show you life is so much more

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My son be proud, we’ll shift this cloud and dance in heavy rain

I’ll show you all that’s possible, strong heart and long white cane.