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IN TOUCH – The politics of power and blindness – part two

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TX:Ìý 27.08.2019Ìý 2040-2100

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PRESENTER:Ìý ÌýÌýÌýÌýÌýÌýÌý PETER WHITE

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PRODUCER:Ìý ÌýÌýÌýÌýÌýÌýÌýÌýÌý LEE KUMUTAT

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White

Good evening.Ìý Tonight, part two of our examination of how to stay in charge of your own life when you’re visually impaired and how to regain control if you lose it.Ìý Well this is a very individual issue which everyone will have their own take on.Ìý So, we’ve invited a group of people who heard that programme to talk about their own experiences and how they’ve dealt with them.

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Mandy Redvers-Rowe is a writer and actor, she began to lose her sight as a teenager.Ìý Darren Paskell has been blind from birth, he’s a technology information officer.Ìý Frank McFarlane taught at St Vincent’s School for visually impaired students in Liverpool – he’s blind himself.Ìý And Annie Rimmer is a psychotherapist.

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For me, one of the most disempowering experiences, which I still have, is just getting lost.Ìý It happens to all of us at some time and Darren Paskell, I know it’s happened to you, not only being lost but in what felt like a very vulnerable situation.

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Paskell

I’d sort of been at work but at the time my job involved me working a lot of evenings and I had got off my stop on the last train home and had the wonderfully enviable prospect of a 30-minute walk back home, just to go to bed, you know.Ìý And I started walking and realised after about five or 10 minutes, I thought I just haven’t got a clue where I am, I don’t recognise any of these steps, any of this pavement, any of this wall stuff, you know, and there’s nobody around.Ìý It’s just dreadfully disorientating.Ìý Actually I think it’s disorienting for anybody but if you happen to be in a position or in that mindset where you just have seemingly every confidence in your ability to basically be able to navigate your way around what should, to all intents and purposes, be familiar routes and then to find yourself in a situation where you’ve just, in effect, kind of gone off – I wouldn’t say off a cliff but you know you just feel if I could see where I was at this point I would know the door number that I was closest to or maybe recognise a lamppost or a post box or some kind of visual landmark and none of that information was at my disposal at this point.

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White

And it’s true, isn’t it, that even the acoustics at night are different, aren’t they?

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Paskell

Absolutely, well not just at night, Peter, but you’ll know this, the weather conditions can change acoustic footprints from hour to hour.

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White

And if the acoustics are different the same place can feel completely different at a different time of day.

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Paskell

That’s right and especially if you happen to be in a really open kind of environment, you’re not expecting to be there.Ìý Say, I found myself in a very large open space that I suspect might have been a car park close to a high street and being late at night it was completely deserted and when you’re in the middle of a situation like that you don’t have those inner shore lines or walls or buildings or anything to kind of orientate yourself by.

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White

So, what do you do?

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Paskell

Well at this point it was late and the last thing I wanted to do was be the idiot ringing up one of my housemates going – well, I don’t know where I am, I don’t expect you to know where I am, I know it’s late at night and I know I’ve woken you up but since you can drive do you fancy getting in a car… I didn’t want to do that, I really didn’t want to do that.

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White

It’s loss of control.

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Paskell

It is loss of control, exactly.Ìý And I sort of thought well I’ve basically got myself into this situation and I kind of – although this is foolish pride here but I kind of wanted to be the person to get myself back on track, as it were.Ìý So, what I did is I realised that I’d been walking for about five or 10 minutes and I thought right, I think I’ve more or less been walking in the same direction, so what I decided to do was do a 180 and start walking, very slowly and methodically, and I will do a rain check after about five minutes or so and hope that I’ve found myself in an environment that I recognise.

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White

Let me move on to Mandy Redvers-Rowe because I think – I mean you had this happen to you, you weren’t alone but in a way that made it worse.

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Redvers-Rowe

So, I was out one day, my children were much smaller than they are now, they were about five and 11, something like that and we’d all been to shop at the supermarket and on the way home we were going to go to the park.Ìý I knew geographically in my head where the park was and where the graveyard was and where the road was and I knew it should be a straightforward walk through.Ìý So, we started to walk through, it was a very hot day, what I hadn’t fully appreciated about the graveyard was there’s lots of little paths and lots of windy paths and both my daughters can see but I can’t and I had my guide dog and I thought we would easily find our way but we just got horribly, horribly lost.Ìý And we kept walking around and then my youngest daughter was going – we’re lost, we’re lost – and I’m going – no, no, we’re not lost, we’re just having an adventure, we’ll find our way, listen out for the playground we’ll hear the playground.Ìý And of course, I could hear the playground but I couldn’t find the way through.Ìý And then my youngest daughter threw herself down and went – we’ll be lost forever; we’ll never find our way out of here.Ìý But we were absolutely lost.

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White

But I mean you’re laughing about it but the problem is having the children with you, you’re supposed to be in charge in a situation like that.

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Redvers-Rowe

You are, you are, yes.

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White

And I’m wondering when that kind of thing happens what that does to your sense of being in charge.

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Redvers-Rowe

I think I’ve always been very open with my children and where it counts I’ve been in charge and need to be but there were times when those things happen, not very happen but when they did and I just sort of accepted I am blind.

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White

I can understand the children will accept that but what about the adults?Ìý And it isn’t so much what they say to you sometimes but what you think they might be saying to each other and all that kind of thing.

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Redvers-Rowe

Yes.Ìý I think I was careful what I told people and what I didn’t tell them.

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White

Yeah, they see it though don’t they, I mean you know should she really be out with those children?Ìý What do you mean by – you’re careful what you tell them?

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Redvers-Rowe

So, in terms of what anecdotes I told friends and things, I was careful.

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White

Annie Rimmer, we have been talking about situations where people feel a sense of powerlessness, but the issue did come up of this idea that we can be the most powerful person in a room, as a blind person.Ìý What’s your view about that?

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Rimmer

I think that’s true.Ìý I think I feel that quite often but when, like Priya was saying last time, when I’m in a situation where people don’t know me or I walk into a room I can feel sometimes people’s anxiety around me.Ìý That doesn’t necessarily feel like a very welcome sense of power but talking to people and enabling them to help feels good because I feel at my best when somebody’s helping me and they’re beginning to relax and feel confident, I can then relax and feel confident and that’s a good feeling.

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White

Isn’t that a huge responsibility, having to feel – when you walk into a room that you’ve got to put everybody else at ease?

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Rimmer

It’s a responsibility but I guess I can step into that or not, as I choose.Ìý I think the problem is that people are feeling anxious about their sense of responsibility around me.Ìý And I’m the one, actually, with more experience of this than most people I meet are.

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White

Let me bring in Frank McFarlane.Ìý You teach or you taught, for many years, blind and partially sighted students.Ìý You obviously want young people to know that there are many things that they can do in life, that they do have many options, does that include, though, telling them how to deal with these kinds of knockbacks that we’ve been talking about?

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McFarlane

I think, yes, you’ve got to try and prepare them for situations where they actually can’t do something, accept it, it’s not weakness.Ìý I used to try and prepare them and say to them – it’s a sighted world out there, the world is not going to make every effort all the time by everybody to adjust to you, get on with it and prove wherever you can that you’re as good as sometimes you even have to prove that you’re better than your sighted peer at a job interview or whatever it is you’re doing.Ìý But there are some things you’ve just got to accept you can’t do.Ìý One of my first experiences when I went to teach at St Vincent’s, I came across a boy who was totally blind and he was determined he was going to work on board ships and he was going to be a purser and I just said to him – don’t see how you’ll do that, I don’t think you can do that.Ìý And he tried several times and never succeeded.Ìý And I think it’s only fair.Ìý You’ve not being ultra-negative, you’re being realistic.

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White

What about – just staying with you for a minute Frank – what about what Annie was saying about this idea, then, of being potentially the most powerful person in a room?

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McFarlane

I think you can be.Ìý Different people have different perspectives of blindness, they shut their eyes jammed tight and think that’s what it’s like being blind, well of course it isn’t.Ìý I agree with Annie that if you’re talking with people on a level playing field and you’re having a discussion and I’m looking at the person etc., then I think, yes, you’re showing that as a blind person well you’re just blind and so what, sort of thing.Ìý And if you can be accepted as that, that’s a fair way towards winning the battle, you never totally win the battle but who does win every batter in life – nobody.

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White

There is this whole issue of where people want to take power away from you, not necessarily meaning to be destructive but in fact just saying I can do this quicker or I can do this better.Ìý And what about resisting that, as opposed to just letting them get away with it because it’s quicker?Ìý Darren, what’s your attitude to resisting handing power over?

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Paskell

Having an idea of what expectations you have before you kind of enter into a situation is always helpful because if you know what you want it’s going to make it, hopefully, easier for you to be able to communicate to somebody else exactly what you’re expecting them to chip in with.

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White

Is it our responsibility to make people feel comfortable, particularly if it’s at the expense of your own independence and control of events?

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Rimmer

I don’t think it’s about having to make people feel comfortable, I think it’s about what’s the most helpful thing in the circumstances.Ìý So, I think is this going to help me too, if you can feel a bit less anxious about helping me, if I can say look, let me take your elbow, that’s a good way of doing it, then everybody wins.

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White

Of course, that can descend into exploiting people as a blind person.Ìý I mean you know you can get to the point where you actually make use of it, or indeed using your blindness to get something that maybe you’re not entitled to, I mean it’s called playing the blind card.Ìý What about that?

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McFarlane

Show me to a pub and then buy me drink as well – yeah, absolutely.Ìý But it does – sorry folks – it does happen though doesn’t it and…

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White

Well it does.Ìý Annie.

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McFarlane

…people are exploited.

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Rimmer

I think – I can see that it’s tempting sometimes to be a bit lazy or to accept the generosity of someone else.Ìý It’s such a learning curve for me as to where I – that line is between giving my power away or having someone want to take it away or holding on to it too tightly.Ìý I want to be facilitated to do things for myself, I can get very frustrated when I’m prevented from doing that because of a badly written website or something but I keep going and then eventually I bad temperedly hand over and say – oh well you use the mouse then.Ìý And it’s a real struggle, I find, an ongoing struggle to try and find that place where it feels like it’s more equal and it’s more open and it’s more transparent.

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White

Mandy.

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Redvers-Rowe

In my really, really busy day do I want to be wasting half an hour finding something just so that I can say I did it, I found this bit of information or do I say I put that on a list for the day I have my support worker in and say please find me this, please find me this.Ìý So, I can speed up how I work.

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Paskell

I think there will always be an element of tension when you’re in a situation that could potentially be disempowering because thinking about, say, an inaccessible website or system or something, sure, should it be up to me to try and essentially waste time because if we’re talking in the currency of time, sure it’s going to be far more efficient properly if I can get somebody else to do – but actually I quite like it because I think to myself this gives me an opportunity to dialogue with somebody to actually show them how much better things could be…

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McFarlane

Get it improved.

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Paskell

Exactly, and if it gets improved for me it’s going to impact others as well.Ìý I think what we’re finding here is that there’s no one real fast reliable rulebook of exact processes that can be used to kind of navigate reliably through all of these situations I think.

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White

Well because everyone we invited seems to relish this discussion so much, it’s only fair, as we near the end of these two programmes, to bring back last week’s contributors to join in.Ìý Priya Commander, Rob Murthwaite, Fern Lulham and Red Szell.Ìý

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In a relationship how do you make sure that these boundaries, we’ve been talking about, are respected?Ìý Red.

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Szell

Yeah, I think it’s got to be a bit give and take.Ìý In 22 years of marriage my wife doesn’t want to be my care worker but you know she’s quite happy to give me a hand where I’m struggling to do something.Ìý It’s not handing over all your power to someone else just because you can’t see.

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White

Rob.

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Murthwaite

Yeah, it’s getting the balance and being honest with each other, I think.Ìý I may find some things more difficult than my wife may realise, even after all these years but equally I may be able to help more but she’s got to let me know, I may not sort of twig that I could do a bit more about any particular aspect.

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White

What are the signs?

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Murthwaite

Spare room? [Laughter]

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Guest

Not being given a cup of tea when she makes one herself.

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Guest

I think what Frank said earlier on about being realistic is really important actually.Ìý And I think with disabled people or visually impaired people, for me, it’s understanding when I need help but the real issue is who decides when that is and who decides what I can do and what I can’t do and how I get that help.Ìý I don’t think you lose control when you get assistance, I think you lose control when you get the assistance that you don’t need or you don’t want.

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Szell

It is about speaking up though, isn’t it and I think my worst years were the quiet ones where I just sat there and thought I had to be able to do this for myself.

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White

So, yes, so how much, Red, does loss and grieving for your sight, how much does that equate with loss of power?

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Szell

I think a huge amount.Ìý In the States they call it rehabilitation, you have to get over your sight loss as if it was a drug addiction.Ìý And I think, yeah, it has really fed into that, I’m a lot happier now that I know that I have to choose my battles and focus on what I can achieve, rather than seeing only what I’ve lost.

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Commander

Being partially sighted is a very difficult place to be actually and some – I know that, for me, once I started to use a long cane and then ultimately got a guide dog, having an identity as a blind person made life an awful lot easier because I didn’t feel I had to pretend anymore, I wasn’t in that twilight zone of being a phony sighted person.Ìý But just to come back, to pick up on what everybody’s been talking about – communication seems to be the key to how to have trusting relationships and not to feel dependent in a way that is uncomfortable.

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Rimmer

And I wouldn’t want to go along with an idea that somehow there can be this ideal state that we achieve of trust.Ìý I think, you know, a lot of what we’re talking about is accepting limits and part of that is accepting our own limits, which we’ve talked a lot about, but part of it is also accepting the limits of other people in our lives who may not be giving us what we – what we would like, even when we tell them.

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White

Yeah but it’s finding the language to set those limits isn’t it?

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Guest

It’s exactly that, though, it’s like being in a foreign country – we are blind people in a sighted world, we don’t speak the same language.

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White

Can I ask you about embarrassment because that’s something – I think we feel, even the ones of us who march about trying to look very confident, we actually feel embarrassed far more often than we would admit and I’m just wondering how much that is about diminished or causes diminished control?Ìý Mandy.

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Redvers-Rowe

I think I’ve been through being partially sighted and I agree with you, that was harder in a way than now I can’t really see anything.Ìý And with that acceptance that I can’t see anything I’ve lost a lot of the embarrassment, I just go with it, I don’t worry so much about it.Ìý I was in a situation the other week where I wasn’t with my guide dog, my husband had gone to the loo and I was – it was at the Edinburgh Fringe actually – and I was waiting outside a venue for him and then a load of people said hello and I thought they’re saying hello to me, and I went hello and I go – you weren’t saying hello to me were you.Ìý But I can’t see, so sorry about that.Ìý But I actually wasn’t embarrassed, I just handled it by explaining that why I mistook their acknowledgement and dealt with it and it was okay.

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McFarlane

I think sometimes we fail to remember that sighted people make mistakes as well.Ìý I used to play a lot of golf and if I missed the ball you’d call an air shot.Ìý I know people who go well I’ve seen blind players play they’re awful or if I play a good shot – oh they’re brilliant.Ìý But in actual fact sighted people miss the ball, sighted people spill water and you know if you can come to terms with that – oh lord, done that again.

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Guest

Again, it’s that acknowledge of vulnerability, isn’t it, it’s like you know we’re all in this together, we all do these things and oh silly me and if you can just sort of laugh it off and acknowledge it in that way, that’s brilliant.

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