Clip I sometimes smell of perfume and not wet dog. I can ride at the top of the bus.

Transcription

1 Downloaded from THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT. BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE BBC CANNOT VOUCH FOR ITS COMPLETE ACCURACY. IN TOUCH Big Blind Walk TX: PRESENTER: PRODUCER: PETER WHITE CHERYL GABRIEL Good evening. Tonight, the Big Blind Walk we ll be exploring the why, the where and the how. And when you lose your walking partner, the pain and a few pleasures, when you have to part with a guide dog. Clip I sometimes smell of perfume and not wet dog. I can ride at the top of the bus. Well that s Tanvir Bush, in mourning with a few compensations. More from her later. Now, fancy a walk, a stroll to the shops maybe? You might even take on the odd hill. But that s not going to be enough for tonight s studio guest. Julian won t be satisfied until he s completed nearly a thousand miles. It s the distance between Lands End and John O Groats, a very famous distance of course, and Julian reckons it should take him, and a variety of human guides, around seven weeks. Julian, welcome to the programme. Thank you Peter, it s good to be here. There s only one place to start why? Why would you go so far for so long?

2 First of all, I believe that we need, all of us, to do much more about raising awareness and understanding of the impacts of sight loss socially, economically, financially, psychologically. There s a lot of sight loss around, as you know, and it s growing we re all living longer and getting older. But I m bound to ask how does you walking nearly a thousand miles help with that? My answer is I want to do something to raise awareness and understanding of sight loss. I also want to promote my research. When I lost my sight all those years ago I actually knew nothing about the amazing work that so many researchers and clinician scientists are doing on a daily basis to prevent sight loss and treat eye disease and restore sight. And it s your contention that there isn t enough research on this and that it does not compare favourably with other areas of medical research. Yes, there s a lot of very good research going on. If you look across the piste in fact, from cell therapies all the way through to robotics and artificial intelligence but I feel that not only does most of the population here not really engage and understand eye research but also that it s one of the most underfunded areas of medical research in the UK. So, if I can engage and enthuse a much wider population and encourage those in government and in other organisations to think again about the need for greater investment then I think it s a job well done. I mean give me the stats I mean when you say it s very underfunded, compared with what, for example? The government are currently spending more on dental hygiene and hearing loss than they are on sight loss. And when you look at the top 30 charities involved in sight loss only 1% of what they invest every year goes into eye research, rather than the practical support for visually-impaired and blind people. When you look at the members of the association medical research charities only.7% of the money they invest every year goes into eye research rather than any other form of medical research, then I think there s quite a disconnect between what people fear around losing their sight and what we re doing to invest in new research. And that s the interesting thing because you say that a lot of charities don t invest in it, which includes the charities that deal with visual impairment. I mean, as you said, the RNIB claimed in some research a little while ago that this is people s greatest fear. But this is what the retiring CEO of the RNIB said just over a year ago when we put the question to her about charities attitude to the funding of medical research.

3 Alexander RNIB took a decision not to get into funding medical research some years ago and I think that was where we drew the line between the here and now and the future. So, we don t put money into medical research and we have no plans to do so. We do put quite a lot of energy and effort and therefore some money into eye health issues. So, the easy things that people can do to prevent avoidable sight loss. You mean things like giving up smoking. Alexander Giving up smoking, losing weight, the healthy diet all those things that we all know. But also getting your eyes tested every couple of years. So, what s your reaction to that Julian? My reaction to that Peter, is that she s missing a trick. Eye health is one important issue but in fact investing in research that prevents sight loss from happening in the first place and treating eye disease in restoring sight, it might be through stem cell research, for example, or in rehabilitating patients through technologies are so important as well. And I want to, with this Big Blind Walk, kick-start the debate amongst government organisations and the voluntary sector into appreciating that we need to do much more. And yet, I mean that s what, in a way, we want to do because there is a debate to be had, isn t it, because it is reasonable also for a charity dealing with people with visual impairments to say money is very tight, services are diminishing, we have to concentrate on the people who are here now and that there are other ways to fund eye research. There are several ways of funding eye research but Peter I just want to go back to this point about the support for visually-impaired and blind people. When I lost my sight I really appreciated the white stick training, the computer training, the offer of a guide dog and so on. And I m not suggesting that that isn t important and hugely valuable to many, many people in this country. What I am saying is that none of that is actually going to give me back my sight or anybody else. And it s certainly not going to prevent the onset of sight loss and it s not going to treat eye disease. So, we do need more investment and we need more people to talk about it. And yet, just to pursue this a little bit further, despite what you say is a very inadequate funding level there is a lot of research going on and in recent years considerable advances. I mean cataract surgery is now very much a routine procedure because of work, drugs can slow down some forms of macular disease and even halt them, we re working on gene therapy for inherited conditions such as retinitis pigmentosa, which I think is what you have. The money is being found isn t it?

4 Not enough money is being found is the point. And I completely agree with you. When I was diagnosed with retinitis pigmentosa back in the mid- 60s my mother was told that she should take us to faith healers. That was really where we were at that point. And you scroll forward 30, 40, 50 years and yes we now have laser surgery, cataract surgery, corneal transplantations wonderful advances in surgical equipment and procedures. They re using next generation sequencing now to sequence the genome. So, there is a lot of activity in research but it needs continual funding. So, where s the money going and who will decide how it s going to be distributed? The money is being received by the National Eye Research Centre based in Bristol, they are a national charity. They will be managing the fund 75% will be going to them, 25% will be going to my social enterprise Vision Bridge because I feel passionately that there should be a twin track approach to this. On the one hand, we should be investing more in eye research and on the other we should be talking about research and Vision Bridge is all about trying to make that connection between what goes on in the laboratory and what happens in the clinic. And that s a national enterprise organisation, which means that you aren t allowed to make profits, is that right? Yes, I have a social enterprise. We are supported by well over 200 academic researchers, clinicians, scientists and patient advocates and we run around the country talking about research, essentially giving it, if you like, a context that is more inspirational. Let s just pause for a moment because we ll come back to the walk itself. I want to take a little detour though to explore what happens when man s and woman s best friend is due for retirement. There was considerable controversy on this programme last year when Red Szell suggested that a guide dog wasn t necessarily for everyone and particularly not for him. Well writer, Dr Tanvir Bush, has taken a different view, she recorded her experiences for us from her home. Bush My best friend, my muse and guide dog Grace retired last April. And due to circumstances out of our control she has been very happily rehomed with a wonderful family. I am alone but I m on the list for another guide dog. Being alone again has caused me some unexpected consternation. You see Grace was the ultimate ice breaker eyes turn to her, expressions soften, people smile when they see her coming. I often felt like her PA, dragging along behind, basking in her reflected glory. Sometimes it could be a right real pain in the proverbial. In spite of the large black and yellow sign on her harness reading Please, don t distract me, I m working people could still be quite rude when I asked them not to fuss her or to leave us alone so she could do her job safely.

5 Grace didn t help by making eyes at everyone. She could and still can seriously work a room that dog. When Grace and I both in full PhD regalia, both hatted and gowned, were invited to lead the procession out of Bath Abbey on our graduation day, Grace just made the assumption that everyone in the abbey was there for her. She nodded and smiled nobly and posed for photos, just like a furry Beyoncé. But the thing is that while Grace was guiding me I wasn t being given the crip stare, that slightly slidey sideways stare that people often use when they re nervous about someone with a disability. There was always this great warm furry beasty between them and the scary blind woman. And now I m Graceless, I ve got no conduit, no ice breaker, people have to negotiate me directly again and I them and it s hard. For nearly eight years I was part of a team. People would call us both Grace and I didn t mind. And I love her so much I thought the whole of Bath Abbey should have been there just for her. But that s not the point. The point is I m having to renegotiate my identity again. And I m blinder than I was eight years ago and I m older. On the plus side, leaving the flat with a guide dog meant harness, water bowl, play collar, lead, dog towel, wet wipes, poo bags, squeaky toy and sometimes I d even remember Grace! And now I flit, a mere handbag and cane. I don t leave a trail of poo bags, dog fur and fishy treats in my wake. I sometimes smell of perfume and not wet dog. I can ride at the top of the bus. I can stay overnight at a friend on a whim without having to worry about dog piddle. And I don t have to take Grace out to pee in the howling gales at 5.00 a.m. I take more risks, physically, than I would with her too, in that I ll go walking alone and if things go wrong at least I know I haven t caused harm to her. I need only be anxious about myself. How deliciously selfish, it is a freedom but it is a freedom to be lonely. So, do I want another dog? Yes, with all my heart. But that dog won t be Grace, so maybe it won t work. I don t know. We ll have to wait and see. Dr Tanvir Bush. Interesting to get your reactions to that. Julian is still with me. Clearly, you re a keen walker, we ve established that, ever contemplated a guide dog? Do you know Peter I haven t. Why not? Because I have two dogs already, I ve grown up with dogs, I love dogs. I don t need another companion and as Tanvir said there s a lot of responsibility dealing with a guide dog, living with a guide dog.

6 I think we ought to find a bit more about you. When did you lose your sight? I lost it completely in I woke up one day and had this very weird feeling that I would lose it within probably three weeks. I d been seeing out of 2% in one eye for a long time before that and it s incredible what you can see with 2% in one eye. And I was sure enough I d put my daughter to bed and woke up in the morning and I couldn t see her. Was that the toughest And that was quite a tough thing. thing about it. That was very tough. And I couldn t, of course, navigate my way round the house, I fell over the dog, she wasn t happy about that. And of course, I couldn t see my wife either and my friends, I couldn t navigate outside, it became very isolating and very alarming and very confusing and very disorientating, all in one 24-hour period. Can we talk a bit more about the actual mechanics of this walk? It s all very well to do it but someone who can see can gain all sorts of things from it they can look at the scenery, they can watch the wildlife isn t walking, if you can t see, a bit dull? Well Peter that s an interesting point. I tandem cycled from John O Groats to Lands End back in 2010 and you interviewed me about that. The average speed we were doing then was about 20 miles an hour. Walking we re averaging about three miles an hour. So, this whole experience is going to be very slowed down for me. I had a very strange compulsion when I went blind to get outside and stay outside. I want to feel the sunshine on my face, the rain, the wind essentially battling the elements, if you like. Because there ll be some quite rough terrain won t there? Yes, there will, especially in the Highlands but I want to be able to feel the terrain. I also love the interaction with my wonderful guides who will have that job of not only stopping me from falling into potholes but also describing the landscapes around me. As you know Peter, with no sight, you listen very hard. I m interested that you say that because there are two ways of looking at it and because do you want someone describing the terrain and the area and the things around you relentlessly? I can remember when I did my Comic Relief walk it was great to start with and then it was it was in the desert this so there s a boulder, there s another boulder, there s a sand dune

7 A boulder is a boulder. A boulder is a boulder. Can you have too much chat and description on a walk Yes, you can. And a great friend of mine, who s my tandem buddy, there are periods of silence, which is wonderful. And I m sure there will be periods of silence on the walk. In fact, a friend of mine who will be guiding me at some stage said to me the other day now Julian I am going to be walking with you for five days, do we have to chat all the time? And the answer to that is no you don t. The answer is certainly not. And are you expecting a good deal of media interest for this? Yes, I am. There is some good television interest coming down the track, which is great. And I m hoping that the local regional press will pick this up, social media has already got hold of it. And I m hoping that this will become a massive collaborate effort Peter and I hope you re going to join me as well somewhere at some time along the route. I m a small cog in a very large wheel and I m inviting eye health professionals, patients, the public to come and join me. Well I ll tell you what I may well take up your invitation. But I want you to do one more bit of work for us because if all that wasn t enough we d like your help with a programme we re planning in the very near future. It s an idea suggested to us by listener James Bird, he wanted us to consider the effect of visual impairment on men s sense of their masculinity. He pointed out that regardless of current views of equality there are still deeply ingrained ideas about what a real man should and shouldn t do things like the difficulty of getting a job or being able to take hold of physical jobs and not being able to do it. We thought this well worth a look, so we d like to hear listeners views and yours first, Julian. Are you partly doing this to prove that a blind man can still be a tough guy? I ve always been a tough guy Peter, I don t think I need to prove that I m a real man. No joking aside, I m doing this because I want to also prove that visually-impaired blind people and sighted people can get out and enjoy the countryside. And that you can be as mobile as you were before you went blind or became very visually-impaired. Okay, well we wish you the best of luck with it. We ll keep an eye on your progress. And we want to hear listeners views on that and Julian s proposed walk. You can call our

8 actionline on for 24 hours after tonight s programme. You can intouch@bbc.co.uk or you can click on contact us on our website and download tonight s and other programmes from there. From me, Peter, tonight s guest, Julian, thanks very much for being with us Thank you, Peter. producer, Cheryl Gabriel, and the team, goodbye.