Should Blindness be Front and Centre?

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IN TOUCH – Should Blindness be Front and Centre?

TX:  02.04.2024  2040-2100

PRESENTER:           PETER WHITE

PRODUCER:            BETH HEMMINGS

White

Good evening.  Do we, visually impaired people, want to be seen as a group huddling together for warmth or do we resent the tendency to shove us all in the same category, what, in less linguistically sensitive times, people used to refer to as ‘the blind’?  If you wanted to be a clever clogs, of course, you might claim that the mere fact that you’re listening to In Touch proves that we do see ourselves as, at the very least, an interest group.  But then you could contradict that by saying that many of us listen for information and that audience research and emails and letters we get show that many of those who do listen don’t have a sight problem at all, presumably they’re just nosey.  What is undoubtedly true though is that if you’re the shy and retiring type it’s not easy to go under the radar with poor sight or none.  I realised that at the moment I got up from the seat on the station platform where I was writing this script, I’d immediately be identified as part of that group, as I unfurled my white cane, searched for the train door and then tried to find an empty seat, attempting to avoid sitting on someone’s lap – all that stuff.

So, do we accept the inevitable and embrace the identity full on or are there ways to select the profile we want to share with the rest of the world?

Well, to discuss this dilemma I’m joined by three people who seem to have gone about this in rather different ways.  One who’s fighting her corner and other people’s at the same time.  One, who’s looked at the funny side of blindness and one who because he’s losing his sight has tried to analyse it.

Rachael Andrews, you basically took on the government by insisting on having a way to cast your vote secretly and independently and you’re currently taking on the social care system and your landlord for failing to send you accessible correspondence.  Are you a natural scrapper or have circumstances forced it on you?

Andrews

Am I natural scrapper?  Maybe people, who know me, would say yes but I would say no and I have to admit that a lot of the things that I now fight for, sometimes I’m doing it for the principle of it, sometimes I’m doing it for myself and sometimes I’m doing it for the people who come after me.  So, maybe I am a natural scrapper, I’ve never thought about it, possibly, yeah.

White

But you do seem to have developed a taste for it since the court case that brought you to people’s notice.

Andrews

Yeah, maybe, I don’t know if a taste for it is the right thing, I think I’ve been in the right place at the right time and people have sort of come to me and said – you know, I’m really fed up with this situation, what should I do about it but I don’t have the mental energy to take it on.  So, I am now vice chair of a local charity called Inclusive Norwich, so that’s what I do all day long, I not only fight the cause for people who are visually impaired and need access in that right but also for all sorts of other disabilities as well.  So, I think maybe I was in the right place at the right time and just sort of decided, yeah, okay, might as well, you know.

White

Right, we may come back to you on whether you want to do it all day long.  I want to bring in Jamie, Jamie MacDonald, you’re a stand-up comedian.  You’ve decided to mine blindness for its jokes, is that a defence mechanism or do you just think blindness can actually be quite funny?

MacDonald

Yeah, I think you can blend the blindness and humour quite nicely.  It’s interesting that this is the topic today because I’ve literally finished a show, my new work in progress show, that talks about us being… I feel that disabled people have only been accepted as a lump and I do believe we should be accepted on more of an individual level, I’d say that disabled folk were like snowflakes, you know, there’s not two of us the same and if a lot of us fall people panic.  And the struggle now, because I’ve got RP, so I steadily lost my sight over about 30 years, I don’t want to go back to the way it kind of was and I talk about this in the show, the difference between now and then, where it was a kind of inaccessible world 30 years ago but now the world is… it’s a more kind of caring, nice place towards disabled people.  But the new struggle that I find now is that nice, new, kind people will do the wrong thing but for the right reasons and I’ll have to thank them for it and kind of suck it up.  An example I use of that is when I got a cup of tea off the train, it’s always train act that was for blind people, isn’t it?

White

We’ll have some more, our third guest is between trains, so…

MacDonald

I got a cup of tea off the trolley; it was roasting and the old lady next to me blew on it for me.  And I just had to thank her and drink round the saliva.  So, I think there’s that kind of… there has to be… you are an individual but you are blind, so you have got one thing in common with other blind people but that’s it, that’s the one thing you have and then behind the eyes is totally different from the head to toes.

White

Okay, let me bring in Andrew Leland, who is the one who’s between trains.  As a reaction to knowing you were likely to lose your sight, because I think you’ve got the same thing as Jamie actually, you’ve written a book – The Country of the Blind – analysing the different ways in which we react to the situation.  Has it made you want to join the club?

Leland

I mean I’m joining it whether I like to or not, there’s no cure for RP and my vision changes year by year.  So, in that sense, I’m on a one-way train and there’s no getting off of it.  But I guess the question is more about whether I band together with this lump, you’re describing, or try to be individual.  And I find real solace and power in connecting with other blind people.  I think about something a blind friend of mine said about braille, which is that, we take for granted how kids, sighted kids, are just surrounded by a world of print and to sort of expose the blind kids to a commensurate amount of braille requires like a really concerted effort.  And I’ve found that with blindness in general, you know, like I think just figuring little things like what kind of screen reader should I use or what kind of cane or should I learn braille – all those questions I’m very alone in until I really had to spend years immersing myself.  And those are just on a purely practical level, crucial questions and things for a blind person to figure out.  And so, yeah, I think community has real value there…

White

But there’s another way to look at it, Andrew, which some blind people do say to me, which is the only trouble with a lot of blind people getting together is that then they all whinge.  Is whinge an American term, I’m not sure, moan, complain.

Leland

If not whining, we would probably say whining or complaining.  But, yeah, I mean, I would say there’s therapeutic value in complaining, you don’t want to have that be your primary occupation but you’ve got to have a release valve for it and if there’s no one else in your life who’s going to be able to appreciate a stranger blowing on your tea in quite the same way, I think there’s value in that.

White

So, will you go on?  I mean I know in doing your research you went to a lot of large organisations, things like the NFB – National Federation of the Blind – in America, do you think you’ll stay with that kind of stuff?

Leland

Stay with those kinds of group?

White

The organisations, yeah, I mean I just wonder whether you’re a joiner or whether you want to be a slipper under the radar, carry on.

Leland

Well, I’ve cracked that code by becoming a writer and I feel like I can hide under this cover of journalistic objectivity and say, you know, I’m writing about the NFB but I don’t join them but along the way I get to meet all these incredible blind mentors and go to their training centres.  So, I try to have my cake and eat it too by dint of becoming a writer.

White

I must say, I mean, it is the contradictions in our own attitudes that quite interest me because you quite often hear blind people say things like – I just want to be treated like everybody else – but of course, at the moment we are treated like everybody else that can lead to problems too because it means you won’t get the help when you need it.  Rachael, essentially, your campaigns involve us not being treated like everyone else, don’t they, I mean they involve concessions or perhaps you’d prefer it if I said adaptations but they certainly don’t involve us being treated like everybody else?

Andrews

No, I think you’re right, I think what the campaigns and the work that I do and the people that I work with, what we do is we want the outcome to be like everybody else.  So, although I recognise the fact that when I go and vote I’m never going to be treated like everybody else because the voting system is entirely a visual thing, the outcome of what I want is the same as everybody else, if you see what I mean.  So, I want it on equal terms.  But I do recognise that because of the dint in my blindness I cannot do it like everyone else.  So, yeah, it’s a difficult balance to strike but you don’t have a choice, as Andrew said, we’re on a train and there’s no getting off.  So, you’ve just got to do what you’ve got to do really.

White

Right.  Is there… yeah go on, Jamie.

MacDonald

Well, just I’d argue that there’s… in a way that there’s no blind, there’s also no everybody else, that’s the kind of bit of a cover up concept as well because it’s like, it suggests that everybody else is treated brilliantly and we’re treated awful.  I think, when you say, we want to be treated like everybody else, it’s more like we just don’t want to be patronised or dragged across streets that you didn’t want to cross, you know, just people’s understanding of blindness because basically what you’re dealing with, when you’re being mistreated as their interpretation of what they think you want them to do in this nice world.  So, we’ve kind of created a rod for our own backs by saying this is people not being treated like this, oh so it’s alright, so we’re going to get treated like that are we.  You know, the genie’s out the bottle.  But I don’t think there’s a case to say there’s an everybody else and then there’s blind people, I don’t think either of those are single things.

White

Right.  I did promise, Rachael, to come back to you on the issue of do you really want to be doing these things each day and every day because almost once you get your identity as a campaigner, you’re sort of stuck with it, aren’t you?

Andrews

Yeah, kind of and I’ve really kind of embraced that by joining Inclusive Norwich and being very…

White

Did they pay you to say their name twice Rachael?

Andrews

No, no but I am the vice chair so I’m going to get it in whenever I can, you know, I understand there’s no such thing as bad publicity.  But, no, you don’t want to do it all the time but there are certain times where the world forces you to have to do it or if you don’t want to, you can go away and go – okay, well I’m just not going to do that thing again or I’m not going to go with that shop or I’m not going to interact with that thing.  And sometimes I do just go home and go, do you know, I can’t be bothered, I’m not doing it today, I’d just rather go and walk my guide dog.  And there are other days where I’m mostly at the time – yeah, okay, let’s have a bit of a scrap.  So, like Jamie says, there’s no one type of blind person and you don’t have to be the same sort of blind person every day either.  So, it just depends on how you’re feeling, you know.

White

I want to go back to Andrew on Penn Station in New York because it’s the contradictions that do fascinate me.  I mean, again, it was on a station the other day when I realised just how drastic some of the contradictions are in that I wanted to just stand on the platform waiting to meet somebody, I didn’t want to go anywhere, I didn’t want to do anything and I stood on that platform and about five people came up and wanted to help me.  Now when I do want help, none of those people are ever around, you know, and so I get angry when there’s no one to help and I get angry when people want to help me when I don’t want help.  Is that something you’ve seen in your… these contradictions that seem to assail us really?

Leland

Yeah, that is such a confounding problem.  And to expect the world to finely calibrate itself to be just what every blind person wants and then, of course, like you say, some blind people want more, some blind people want less where different situations demand the differences…

White

Yeah but the trouble you want more and less within about 10 minutes of it yourself, you know, it’s not other people wanting… it’s you wanting, yeah, that’s what I find so tricky.

Leland

Yeah, yeah, I mean, there’s no universal rule.  I mean I think the only rule of thumb that I think sighted people just need to understand and to carry with them is to listen to the blind person because I think so often somebody will say – Oh, do you need some help – and then they’ll say no and then that answer will be sort of brushed off and they’ll say – Well, let me just offer you something, clearly you’re in distress on some level – and just pushing and pushing.  And I don’t know if it requires like wearing a t-shirt that says like actually I’m fine, thanks, unless I’m waving my arm.  But I think that’s the big lesson is just believe the blind person and let the blind person say what they need rather than offering it to them or dragging them across the street.

White

Right.  I want to stay with you to raise something which I’m going to raise with all three of you.  It’s just one of the best quotes, I think, I think it was in your book, Andrew, but I’ve seen it a few times, this lady Georgina Kleege who said: “On a good day, my blindness is less important than the weather.”  Is that something you can… as someone who’s losing their sight, is that something you can imagine?

Leland

Yeah, you know, I think it’s tricky to compare disability to other identities but I also think it’s useful in a way.  When I think about, let’s say gender, I’m a man and there are times when it’s important for me to say that, you know, and to be a man.  There’s times when my masculinity is relevant.  But when I’m going to eat lunch later today, I’m not going to be eating my salad as a man, right, I’m just eating a salad.  And I think blindness can have the same kind of valence, it’s like there are times, yes, when I need an accessible voting machine, right, or I need these materials to be put in accessibly or there needs to be braille labels on this elevator.  But many times, I’m just, you know, I’m eating lunch, I’m going to work, I’m hanging out with my family and blindness does matter less than weather, as Georgina said.

White

I mean Jamie, this issue of contradictions but also if Georgina Kleege is right and it’s less important than the weather, that’s tough for you, isn’t it, you’ve built a lot of your act on the fact that it’s quite a big deal?

MacDonald

Well, if it’s less important than the weather, that’s the case when it’s icy, when the weather is very important.  I see contradiction in… the blindness as being part of everyday life is part of the [indistinct word], it’s not exceptional, it’s just little things, it doesn’t have to be a significant blind thing.  Like I always think it’s hilarious that they put braille, the word ‘bleach’ in braille on bottles because I just wonder whose life has that saved, you know, like these little kinds of insignificant inconsequential things but are just so hilarious, it’s like no blind person’s going to drink bleach because there’s no braille on the bottle telling them it’s bleach.  There’s so many little things that are overlooked… I mean it’s not a significant blind thing that we all kind of take care walking down the street, that’s just how we live our life, the blindness kind of steers our life in that kind of scenario.  But I do feel that it is always there, if you think about it, you’re always doing something like, you know, if you’re doing something with the oven, you’re not looking at the numbers, you’ve figured out how to do it.  But that’s governed by your blindness.

White

The great thing about this bottle story is that somebody pointed out that it was so significant that the English put braille on a bottle of bleach but the French put it on a bottle of champagne, which says a lot about the English, I think.

Rachael, less important?  How many days is it blindness less important than the weather to you?

Andrews

Well, I think that depends on what you’re doing…

White

On the blindness and the weather, I suppose.

Andrews

Yeah, I think it also depends on, unfortunately – and this seems like a really terrible generalisation to make – but the rest of the world because I can [indistinct words] down the street with my guide dog and most people say – oh are you training the dog – for a start because, of course, apparently… I mean I don’t even know what a typical guide dog owner’s meant to look like, apparently I don’t look like one.  And then they will say – how fantastic the guide dog is and oh I bet you’d be lost without him.  Yes I would.  Isn’t he handsome?  Yes, he is.  Oh he’s so amazing.  Yes, he is.  And then I’ll move off and they’ll go – Oh mind those steps or mind the lamppost – and I’ll think well did you just not sort of spend 10 minutes telling me how fantastic he was.  So, the rest of the world does have a little bit of a problem with what to do and how to treat visual impairment.  So, sometimes, if I don’t meet that in the rest of the world my visual impairment is not that important.  I mean, obviously, as Jamie says, it governs how you do things but it’s not front and centre of everything I do.  It’s when it goes wrong that it actually has to come front and centre.

White

That was, in a way, right at the root of why I wanted to talk about this.  Front and centre.  Let me just go back to you, Andrew, finally on this.  You’ve written a book about it, you’ve spent a huge amount of time researching it.  Can you imagine it not being front and centre?

Leland

I mean I think that… that the point that was just made is spot on.  I wrote about a blind bioethicist named Adrienne Asch who was blind from birth and always argued that blindness was incidental in her life and… until she entered the job market, she graduated from college and was exclusively denied a job because she was blind.  And her friends joked, like Adrienne is 23-years-old and just realised she’s blind.  And I think that that kind of sums it up for me, is that you don’t need to think about it, it’s just a way of living until it excludes you and it pushes you away from inclusion, whether that’s inclusion to information, how you access information or society or employment and all the things that blind people can be marginalised from.

White

Okay, that sounds like a good place to stop.  Andrew’s got to catch a train, Rachael’s got to go to a meeting, what have you got to do Jamie?

MacDonald

I’ll go for a nap, I think.

White

Go for a nap.  Well, look, thank you all so much – Rachael Andrews, Jamie MacDonald, Andrew Leland – between trains – thank you very much indeed.

We’d like to know what you think, listening to that, are you a huddler together for warmth or a striker out for your own identity or are we entitled to do both?  You can email [email protected], leave your voice messages on 0161 8361338 and there’s more information on our website bbc.co.uk/intouch.  Next week, we’re going to be looking at plans to improve the ways visually impaired students get tailor-made equipment and human support.  That’s it, from me, Peter White, producer Beth Hemmings, our guests and studio managers Kelly Young and James Bradshaw, goodbye.