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IN TOUCH – The politics of power and blindness

TX:Ìý 21.08.2019Ìý 2040-2100

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PRESENTER:Ìý ÌýÌýÌýÌýÌýÌýÌý PETER WHITE

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PRODUCER:Ìý ÌýÌýÌýÌýÌýÌýÌýÌýÌý LEE KUMUTAT

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Music

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Clark

I think the first time I really felt utterly powerless, as a young adult, was when I was 16, it was my first year of sixth form and there was a Duke of Edinburgh project being run and it was an expedition to Malawi.Ìý And all of my friends were going and the guy running the project came to visit the school and at the very end of the presentation I approached him, just to say, oh by the way I’m partially sighted, what’s your policy on taking visually impaired students on this trip, thinking he’d say – oh well, it’ll be absolutely fine.Ìý But of course he froze and said – oh well, absolutely not, we couldn’t possibly take any visually impaired students on this trip.Ìý It was really the first time that I’d just come up against a complete brick wall and there was no way of talking my way out of it, there was no way of reasoning with him, there was no way of negotiating – he simply wouldn’t listen.Ìý So, it was the first time I’d really experienced that shock of just having every shred of power taken from me by somebody else.

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Tweddle

It’s something you experience throughout life, I think.Ìý I’m a working-class boy, one of my earliest memories is dad and Uncle Ken knocking through the wall in the front room to make an arch between the front room and dining room.Ìý And from a very early age you’re kind of aware that you can’t do those things, you’re never going to be out there under the car repairing it and so on.Ìý And those things matter because when you grow up in the environment that’s how you feel you should be.Ìý I think one thing I found is that as a child you think when I’m older that’s going to be different.Ìý And of course, it’s not.

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Paul

I have been involved with Toastmasters International for about five and a half years now and when I gave my first prepared speech to the club, and I was nervous about it, I’d practised it and sat down again feeling a bit like a bag of nerves and the feedback I got was that, although it had been a good speech, it was a shame I’d delivered this speech facing the wall.Ìý That’s when I felt like I was really starting to lose control there, I couldn’t believe that I’d managed to do that.Ìý Then the more I gave speeches in front of the club my feedback would be – these are really great speeches; however, you are very static on the stage and some hand gestures would really enhance this speech.Ìý Because I’ve never been able to see I have no understanding of body language and I just went away and felt very sorry for myself and felt quite powerless.

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White

Good evening.Ìý I don’t think any regular listener to In Touch could accuse us of playing down the capabilities of blind people.Ìý After all, in our time, we’ve featured parachute jumpers, racing drivers, judges, home secretaries, acrobats, actors – I could go on.Ìý If anything, we could be accused of the reverse – playing down some of the difficulties of everyday life, which all but a few super men and women have to contend with.

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Those voices you heard earlier belong to Chloe Clark, Allan Tweddle and Megan Paul, describing some experiences where their lack of sight isn’t simply a physical deficit, it puts them in a situation which can affect that sense, that we’re all entitled to surely, the sense that we’re running our own lives, that we’re in control.Ìý The contributors you heard just now used the word powerless and what we hope to do in these two programmes is to listen to stories that have caused blind people to feel out of control, analyse them and then perhaps concentrate on how to use the power we do have to put ourselves back in charge.

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So, let’s hear from our studio guests.Ìý Fern Lulham, I’m going to come to you first, now you’ve recently had something happen to you physically, which I think you would definitely say left you out of control.Ìý Just tell us about that.

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Lulham

Absolutely.Ìý I was in a car crash with my boyfriend.Ìý We were driving along a road towards Faversham; I knew it was sort of coming just from my boyfriend’s verbal reaction of going – oh my gosh – I could tell something was about to happen but of course I felt very powerless to protect myself in that moment.Ìý And then obviously the collision happened and I didn’t know which direction it had come from and why it happened and who was in the wrong, I just went spinning out of control, all I could do was scream and cry in that moment, it was really terrifying.

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White

And how long did the confusion last for?

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Lulham

It lasted a long time.Ìý Afterwards I sat in a nearby garden of one of the neighbours that had luckily come out to support us and help us and I still didn’t know what was happening.Ìý And then I got on the phone with an emergency service guy and he was asking me – is there anyone else on the road, is there smoke, is there gas on the road – and I had no idea, I didn’t even know what had happened still.

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White

So, in a way it wasn’t just the very frightening thing that had happened to you, it was the fact that you couldn’t give the information that you were expected to give?

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Lulham

Exactly, and it makes you feel sort of downtrodden and useless.Ìý I sort of wish I’d been a bit more assertive, in terms of just asking people.Ìý I think because I was in a very vulnerable state, that’s when my self-esteem issues, I would say, come into play and I think – oh I’m going to sound stupid if I say I don’t know what happened, because I was in the car and everyone else thinks I know what had happened because they may not know how bad my sight is, they’ve only just met me and all of that sort of stuff.Ìý So, I felt stupid to say to the people around – I don’t know what’s happened, can you tell me.Ìý And actually, that’s ridiculous and I should have just asked.

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White

Right.Ìý That’s one sudden big event.Ìý I want to go to Red – Red Szell – now you’ve been gradually losing your sight since a teenager.Ìý Married, you’ve a family, you’ve done a range of jobs, when have you felt most out of control over that period and what caused it?

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Szell

I know that I used to be able to see a lot of the things that I can no longer see.Ìý I hate to say it, I feel most in control when I’m climbing a rock and I’ve got all my hands and feet and no white stick in my hand and I just know what I’m doing and I’m following the cracks up the rock.Ìý And I feel least in control pretty much as soon as I leave my front door and walk up to my local tube station to go to work because the randomness of stuff that gets left over the pavement changes every single day and you never know whether you’re going to have an accident or not.

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White

Has there been a correlation between the amount of sight you have, because it’s changed over a period of time, and the amount of power you have?

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Szell

I think definitely, yeah, certainly.Ìý The amount of power I feel I have, which is linked as Fern says to self-esteem, the less I can see the more worried I am about being wrong footed by the world around me.

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White

You talked about being anxious, but that isn’t quite the same as being out of control is it, I wonder what you mean by out of control.

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Szell

Out of control is when I have absolutely no idea whether I’m standing on a pavement or on a traffic island and there’s traffic going all around me and I can’t even hear people around me to ask.Ìý Anxious is wondering whether you’re crossing the road as quickly as everybody else is around you and whether you should have just grabbed somebody’s arm and say – could you give me a hand to the other side of the road.Ìý All of which is actually surrendering control of your own self.

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White

Let me bring in Priya Commander.Ìý She is a psychotherapist; she is herself blind.Ìý Priya, everyone has accidents, everyone feels inadequate at times, so in the context of blindness are we any different to anybody else because you know some blind people listening to this will say – yeah, well know, it’s everybody, you just shrug your shoulders and you get on with it.

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Commander

No, I don’t think we’re any different, it’s just that perhaps having any sort of impairment you’re more vulnerable on a random, probably daily, potentially hourly, if you’re out and about, basis.Ìý So, yeah, it’s about being vulnerable I think really and we’re all susceptible to that, it’s just that when you’re blind you have to find strategies for coping with it which change, especially – it sounds as though Red and I are in the same position in the sense that we’ve both experienced gradual inexorable sight loss and that means constantly having to readjust your way of coping and doing things.

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White

Well the interesting word you use there is constantly isn’t it, because I just wonder what effect the frequency with which these things happen is a big factor, is what perhaps makes it different from a blind person’s point of view?

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Commander

Yes probably.Ìý I think that’s true that Fern’s experience of a shocking car accident, that could happen to anybody but it’s first of all her response but it’s also potentially, if you’re a blind or severely sight impaired person, you’re susceptible to accidents every day.

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White

Let me bring in Rob, Rob Murthwaite, now semi-retired, travels quite a lot, like Red you have Retinitis Pigmentosa.Ìý You’re also a guide dog owner and I think you’ve said that can cause you problems of control.

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Murthwaite

It can do in the sense that a lot of people seem to feel free to interfere with the guide dog, in a way that they probably wouldn’t if I was using a white cane, they wouldn’t be grabbing hold of it or stroking it.Ìý I was on the tube last week and the dog just plonks himself down, wherever he plonks himself down, there were people around who kept telling me my dog was in the way and so on and so forth, and trying to get me to move the dog, I just refused to do that and said well if people need to get past the dog they’ll have to ask me to move the dog.

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White

And why actually didn’t you move the dog?Ìý That would have been the easiest solution.

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Murthwaite

Because I didn’t know where to move the dog to and also I think one of the things about being a visually impaired person is that I think it’s reasonable for me to expect other people to learn how to deal with it as well, it’s not just a case of me dealing with my visual impairment, other people need to be able to deal with it in a reasonable and sensitive way as well.

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White

But I suppose the problem is, is that where the powerlessness comes in, because you’re not going to suddenly get people to deal with it in a reasonable way are you?

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Murthwaite

I think you have to take control of the situation and try, in a nice way, to help people learn.

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White

So, I’m going to stay with you because that’s what I was thinking, so, you’ve led me to it.Ìý What is power in this situation?

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Murthwaite

I think it’s something that you learn in the process.Ìý I mean I’ve been visually impaired, not all of my life but for a very long time, I’ve had a severe visual impairment and I think when I began to lose my sight seriously it was often a difficult relationship with sighted people from whom I needed assistance.Ìý But I’ve learned, I think, to be assertive in a gentle and reasonable way, I know what I need and I’m insistent on getting what I need and not what other people think I need.Ìý And sometimes that can cause problems with people.

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Lulham

Sometimes power is about the way other people view you and how assertive you are, like Rob was saying there, and sometimes power is simply about how you view yourself and thinking – is this situation worth me getting this upset about, don’t let it spiral out of control in your mind, take back the power by seeing it for what it is.

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White

So, when do you feel most powerful would you say?

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Lulham

When I’m giving knowledge and vulnerability to people, so talking about my experiences, like I am now, people say there’s a lot of power in vulnerability and knowledge is power.Ìý And I think a lot of times being able to share those things with people about what it is actually like.Ìý When I was listening to all of these stories I almost sort of started tearing up just because when you listen to people and you know what they’re going through I think that’s such a powerful thing because it connects you with people and instead of it being a us and them situation, like oh move your guide dog, you suddenly realise oh actually if that was me I would probably feel this and this and this and it just bonds you in such a significant way.Ìý And I think there’s huge power both in knowledge and vulnerability.

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Szell

I think it’s also a matter of a lot of my dissatisfaction with my blindness was because I was brought up a sighted person and was surrounded by sighted people.Ìý I realised when I started losing my sight, I was running to keep up with them and actually I think if you can bring the world to a pace that you’re happy with then you’ll feel more in control.

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White

Do you think about control?Ìý Do you plan it, do you put yourself in situations where you will be?

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Szell

Actually, I try and put myself in situations where I won’t be in control or be controlled by other people, I try and put myself in situations where we’re sharing responsibility.Ìý I’m good at doing the cooking and washing up, my children are far better at setting the oven temperature and making sure that something is browned on all sides.

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Commander

Just listening to everybody, in terms of feeling powerful, it’s an internal experience, people can be annoying and – especially if you’ve got a guide dog.Ìý I have one, I’ve been told – get the dog away – and stuff on public transport.Ìý If I’m feeling a bit anxious and vulnerable or out of my comfort zone I might react in an aggressive manner or I might also feel sorry for that person for being such an idiot.Ìý So, it really is very subjective how you respond and what makes you feel powerful because something can have happened before that experience that is disempowering to add to it.Ìý So, I think, yeah, most people do need to feel that they’re in control most of the time but to have some sort of techniques for managing when they’re not.

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White

Yeah, so, when, for example, you’re in a situation where either you feel you want to or need to hand power to other people, to get them to do things, can you do that without losing power yourself?

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Commander

Well I think that’s very powerful to be able to ask others to help you to do something that you need doing.Ìý And most of the time my experience has been very good, that people like to be asked.Ìý I think that part of the problem for anybody with an impairment, whether it’s visual or other, is that others are trying to second guess what you might need.Ìý So, when you actually say could you tell me how to get from A to B or where the chair is or where are the lavatories, people are delighted to be able to tell you because they themselves are anxious in your company as to what you might need and whether they’re going to read you right.

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White

So, how much does external power influence internal power, I guess how you feel about yourself and the fact that you are managing to keep your self-regard.Ìý Fern?

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Lulham

I think it can and like everyone’s mentioned it is inevitable in some respects.Ìý I think it’s easy to say the old adage of don’t worry about what everyone says to you, just be confident in yourself and that’s all that matters.Ìý And we’d all love to reach that enlightenment, wouldn’t we, but it’s probably not going to happen.Ìý You know, there are going to be things.Ìý Sometimes you can brush things off, sometimes you can’t and I think it’s perfectly alright if you can’t, you just need to forgive yourself for that.Ìý But I also do believe in building up your self-esteem, in being confident and again, I guess it’s that communication between the internal and external power in that you want to see other people as working together with you, rather than me versus the world, you want to see them as people that want to help you and that you can help by sharing your knowledge.

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Commander

Confidence, it needs work actually.

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White

And how important is it, Priya, to confront this because some people will be irritated that we’re even talking about it and I just wonder how important you think it is to confront it, some people will think even talking about it is – we shouldn’t probably do because…

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Commander

I think it’s helpful to talk about these things because everybody has experience of feeling disempowered at some point or other in their lives.Ìý One of the things that I did want to say today about this is that actually my experience of being a blind person, either with a long cane or with my guide dog, is that I have quite a powerful effect on people when I – especially strangers – when I walk into a room, perhaps in a professional capacity and most of the people who are in that room who may not know me are quite thrown by the fact that there’s suddenly a person with an impairment in the room and they don’t know what to do.Ìý And that’s a powerful position to find yourself in, not necessarily positively powerful because then, I think all of us have to work very hard to try and make ourselves pleasant and friendly and all the rest of it.Ìý But actually, having a disability is a powerful vehicle and it’s about embracing the fact that you – you’re not inconspicuous.

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Szell

I find the first thing that happens when I walk into a room, as a blind person, is they offer me a chair, which, you know, I don’t know whether they are overwhelmed by my potential and feel they have to cage me but that’s certainly how it feels.

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White

Well, I’m going to stop you there because we always knew from the start that this subject was too much for one programme.Ìý So, we’re going to be returning to it next week, with a different cross-section of visually impaired people, with their own ideas and experiences.Ìý Meanwhile, thanks very much to Priya Commander, Rob Murthwaite, Fern Lulham and Red Szell.Ìý And there will be an extended podcast of this programme available from our website and on Â鶹ԼÅÄ Sounds.Ìý From me, Peter White, producer Lee Kumutat and the team, goodbye.