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BBC Radio 4 In Touch
3rd February 2009

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Factsheet

DATA PROTECTION
Guest: Phil Jones, Office for the Information Commissioner

The programme take another look at how Data Protection laws can impede visually impaired people’s access to information.


CONTACT

INFORMATION COMMISSIONER (ICO)
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
Tel: 01625 545745
Fax: 01625 524510
http://www.ico.gov.uk/
The Information Commissioner's Office is the UK's independent public body set up to promote access to official information and to protect personal information.
The ICO regulate and enforce the Data Protection Act, the Freedom of Information Act, the Privacy and Electronic Communications Regulations and the Environmental Information Regulations.
The ICO provides guidance to organisations and individuals.


POLAR EXPLORER
Guest: Mark Pollock

Peter talked to Mark Pollock who has just returned from his latest challenge, the first race to the South Pole in almost a hundred years, since the classic Scott-Amundsen race. Mark was part of a team of three, in a race of six teams.

Mark’s previous adventures have included kayaking across the Irish Sea, and the highest and the lowest marathons (on Everest, and by the Dead Sea).


ELECTRIC CARS
Guest: Christopher Danielson from the National Federation of the Blind (USA)

With advancements in technology and a new administration in the White House, electric cars are approaching the stage where they may challenge traditional cars.

The programme report on a movement in the USA to introduce legislation aimed at minimising the risk to the visually impaired of silent electric cars.


GENERAL CONTACTS

RNIB
105 Judd Street
London
WC1H 9NE
Helpline: 0845 766 9999 (UK callers only - Monday to Friday
9am to 5pm )
Tel: 0207 388 1266 (switchboard/overseas callers)
Web: www.rnib.org.uk
The RNIB provides information, support and advice for anyone with a serious sight problem. They not only provide Braille, Talking Books and computer training, but imaginative and practical solutions to everyday challenges. The RNIB campaigns to change society's attitudes, actions and assumptions, so that people with sight problems can enjoy the same rights, freedoms and responsibilities as fully sighted people. They also fund pioneering research into preventing and treating eye disease and promote eye health by running public health awareness campaigns.


HENSHAWS SOCIETY FOR BLIND PEOPLE (HSBP)
John Derby House
88-92 Talbot Road
Old Trafford
Manchester
M16 0GS
Tel: 0161 872 1234
Email: info@hsbp.co.uk
Web: www.henshaws.org.uk
Henshaws provides a wide range of services for people who have sight difficulties. They aim to enable visually impaired people of all ages to maximise their independence and enjoy a high quality of life. They have centres in: Harrogate, Knaresborough, Liverpool, Llandudno, Manchester, Newcastle upon Tyne, Salford, Southport and Trafford.


THE GUIDE DOGS FOR THE BLIND ASSOCIATION (GDBA)
Burghfield Common
Reading
RG7 3YG
Tel: 0118 983 5555
Email: guidedogs@guidedogs.org.uk
Web: www.guidedogs.org.uk
The GDBA’s mission is to provide guide dogs, mobility and other rehabilitation services that meet the needs of blind and partially sighted people.


ACTION FOR BLIND PEOPLE
14-16 Verney Road
London
SE16 3DZ
Tel: 0800 915 4666 (info & advice)
Tel: 020 7635 4800 (central office)
Web: www.afbp.org
Registered charity with national cover that provides practical support in the areas of housing, holidays, information, employment and training, cash grants and welfare rights for blind and partially-sighted people. Leaflets and booklets are available.


NATIONAL LEAGUE OF THE BLIND AND DISABLED
Central Office
Swinton House
324 Grays Inn Road
London
WC1X 8DD
Tel: 020 7837 6103
Textphone: 020 7837 6103
National League of the Blind and Disabled is a registered trade union and is involved in all issues regarding the employment of blind and disabled people in the UK.


NATIONAL LIBRARY FOR THE BLIND (NLB)
Far Cromwell Road
Bredbury
Stockport
SK6 2SG
Tel: 0161 406 2525
Textphone: 0161 355 2043
Email: enquiries@nlbuk.org
Web: www.nlb-online.org
The NLB is a registered charity which helps visually impaired people throughout the country continue to enjoy the same access to the world of reading as people who are fully sighted.


DISABILITY RIGHTS COMMISSION (DRC)
Freepost MID 02164
Stratford-upon-Avon
CV37 9BR
Tel: 08457 622 633
Textphone: 08457 622 644
Web: www.drc-gb.org
The DRC aims to act as a central source of advice on the rights of disabled people, while helping disabled people secure their rights and eliminate discrimination. It can advise on the operation of the Disability Discrimination Act (DDA).


DISABLED LIVING FOUNDATION
380-384 Harrow Road
London
W9 2HU
Tel: 0845 130 9177
Web: www.dlf.org.uk
The Disabled Living Foundation provide information and advice on disability equipment.


THRIVE
The Geoffrey Udall Centre
Beech Hill
Reading RG7 2AT
Tel: 0118 9885688
Email: info@thrive.org.uk
www.thrive.org.uk
http://www.thrive.org.uk/gardening-for-partially-sighted-people.asp
www.carryongardening.org.uk
Thrive is a national charity, founded in 1978, whose aim is to research, educate and promote the use and advantages of gardening for those with a disability. Thrive’s vision is that the benefits of gardening are known to, and can be accessed by, anyone with a disability.





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Transcript

IN TOUCH

TX: 03.02.09 2040-2100


PRESENTER: PETER WHITE

PRODUCER: JOE KENT

White
Good evening. Tonight two very different views of risk. We welcome back the blind man who has just spent January racing the best part of 700 miles across the Antarctic ice cap. We'll also though be talking to American campaigners worried that the lack of noise made by increasingly popular electric cars could be the latest road safety hazard.

First though more on the perplexing issue of data protection and how it seems to be preventing some blind people getting information in the way they would prefer. You may remember that we recently spoke to listener Adrienne Chalmers.

Chalmers
I see a CPN once a month.

White
That's a community psychiatric nurse.

Chalmers
That's a psychiatric nurse yes. Now we make appointments for the next visit when she comes round, however, if there needs to be a change in that appointment time the most effective way of her communicating that to me has been by e-mail. I don't read Braille, I don't read print and that was just the easiest thing all round. Now in October she informed me that a policy of NHS Lothian now prevented her or her secretary from e-mailing me solely about changing appointment dates.

White
So in other words there is no way that you can really get it unless you got a print letter and you can't read that, you'd have to depend on somebody else to do that for you.

Chalmers
Yes and it seems absolutely ludicrous that something which is supposed to be to protect my confidentiality actually means that the only way they can communicate with me is by a method which guarantees that I don't have confidentiality because I have to get a third party to read it to me.

White
Well NHS Lothian, the board involved, told us at the time that they were sympathetic and that they were looking at the policy but that this was appropriate in the light of the Data Protection Act. Some of you have told us that you do receive appointment information via e-mail, while others have had similar problems with a range of organisations. To try to get to the bottom of who's right I've been talking to Phil Jones from the Information Commissioner's Office, which is responsible for data protection law.

Jones
I wouldn't want to criticise anybody for taking their responsibilities seriously but the really important point to stress is that what you're required to take is appropriate security measures and - and this is a hugely important point - that you're entitled to take into account what the wishes of the recipient, the individual, whose personal information is potentially at risk.

White
So the fact that Adrienne, in this case, offered to sign a waver, she said I do understand the risk but I still want that, that should have been an overriding issue really?

Jones
Well what it does mean is that with that agreement from Adrienne, if she was prepared to give a clear commitment that she understood that there was a degree of risk, it was a degree of risk she was prepared to accept, that would ensure that NHS Lothian would not be in breach of the Data Protection Act. And I think one of the things that I would stress here - I mean lots of very sensitive or relatively sensitive information is sent through the general post, for example, hugely sensitive information may be isn't. And so I think it's important to be mindful both of the nature of the data but in this particular case the wishes of the individual concerned.

White
So the business of how high is the security is that an entirely subjective thing, is it basically down to the customer?

Jones
Information has different sensitivities to different individuals depending on their circumstances. And for those reasons you can see why organisations would wish to err on the side of caution. But I think that unless the information is of particular sensitivity it seems to me that it would be perfectly reasonable, it's my judgement, that it wouldn't involve a breach of the Data Protection Act.

White
So that phrase: "particular sensitivity", what do you mean by that because in a way what I'm asking you is can the customer override almost any sensitivity if he or she says it doesn't matter to me?

Jones
The reason I'm being quite careful here is that I could understand that if there was information of a remarkable degree of sensitivity and an organisation felt that the person they were dealing with, even though they might have said yes I agree, hadn't fully appreciated the extent and nature of those risks. Now I think in those cases I would understand them sticking to their guns as they were.

White
Quite a lot of listeners have asked us about encrypted e-mail - is that a way to ensure that our data is protected and people can receive information in the format they feel most comfortable with?

Jones
There may be - I don't know - but there may be some practical implications for organisations in rolling out such solutions. What I'm saying is it's not the Data Protection Act that stops them doing it. If there are technical measures they can use then certainly those are likely to be able to make it so that they can even send fairly sensitive information by e-mail.

White
So if the act doesn't stop information being included in e-mails - and you've made it clear that it doesn't - why do you think there's such discrepancies surrounding who's willing to do what?

Jones
The point is that there's a trade off on the one hand between the remarkable ease and speed of e-mail, which we all get used to, and the legitimate concerns that there are about the potential for things to go wrong - messages to end up in the wrong place or be seen by somebody else. And when you ask why there's a big discrepancy in the way that people behave, I suspect that might have something to do with experience, you know if somebody's had a bad experience they're likely to adopt more stricter measures. And also, I suspect, that there'll be different levels of risk assessment made in different organisations.

White
Do you think maybe the commission could be doing more to make organisations aware of their duties to disabled people because at the moment it seems that blind and partially sighted people have to fight this battle individually?

Jones
One of the things that we would try to do is to try to ensure not only that people are mindful of their data protection responsibilities but where it's appropriate to draw to their attention that they shouldn't apply the law too vigorously in a way that has an untoward or detrimental effect to individuals that arguably might be out of proportion to the actual risks involved. Certainly we're keen to intervene and help in those ways where we can, the only reason I'm being slightly cautious is we're a relatively small organisation and there's an awful lot of things on our plate at the moment and some of those are to do with people losing lots of data.

White
Phil Jones from the Information Commissioner's Office.

Now one man who may be chortling a little more than most at the paralysis of London in about eight inches of snow yesterday is Mark Pollock. Now Mark is an incorrigible blind adventurer who's just returned from his latest challenge - the first race to the South Pole in almost a hundred years, since the classic Scott/Admundsen head to head. Well Mark was part of a team of three in a race of six teams. This follows, for him, kayaking across the Irish Sea and the highest and the lowest marathons - on Everest and by the Dead Sea. From a noisy Heathrow this morning, just back from the race, Mark told me how he'd fixed on this latest challenge.

Pollock
I had gone through January and I hadn't decided what I was going to do for 2008 and I found out that they were doing this South Pole race for the first time. So it was through slight boredom and concern that I didn't have anything planned that I found out about this thing.

White
Because you have done a challenge a year, haven't you, pretty much, for the last 10 years?

Pollock
And my sport had been rowing, when I went blind I stopped rowing and I didn't know that blind people really did any sport - that's how little I knew about blindness and perhaps some of my own prejudice. But then I suddenly was blind and it took me three years to get back into sport. And then I moved on to these adventure races - six marathons a week in the Gobi Desert; Iron Man Triathlon; all sorts of races, which lasted anything from a day up to maybe two weeks. But this South Pole race was nearly seven weeks away and it was way off the scale for me, about a thousand kilometres skiing and pulling pulks and just living at minus 40, minus 50.

White
So this one has been the toughest of the lot has it?

Pollock
It's been the longest I've ever been away from home in my life. It was the coldest, it was the furthest distance, it was the most expensive.

White
What intrigued me was something you said about it, I think even before you went, which was that you were going to suffer from a lot of the sensory deprivation that you actually needed. I mean you were going to have to wear heavy gloves, the kind of noise you experience. What did that prove to be like in the end?

Pollock
I really want to go back and listen to a lot of the stuff that I said before I went. I think I was concerned that using the gloves I wouldn't be able to use my touch and that and I was concerned about getting frost bite because I know for myself and lots of other visually impaired people touch is important. But I didn't really understand how important it was until I was down there and I couldn't use my fingers and that was really, really tough just to do anything - to get your water in during the breaks, to scoop out some food to keep you going during the 12, 13, 14 hour days.

White
What about the hearing - I think that would have worried me more?

Pollock
Yeah before I went down there my thinking was that we were going to have our hoods up all the time, that I was going to be very, very windy and I wouldn't even be able to talk or communicate with my two team mates. Now that wasn't so bad, we were able to hear each other and as time went on we didn't really speak much to each other - we just got up in the morning, got out on the skis and just got moving - and I followed Simon O'Donnell, I was off the back of his sledge with two carbon fibre poles going from the back of his sledge to my ski poles based on a kind of guide dog harness principle, I could feel him go left, right, up and down over the waves of snow. And we didn't need to talk as much, so we managed to build a system to get round that and it was the touch that was the big thing.

White
What are you going to do next?

Pollock
I'm going to stick on snow, I don't know about other blind, visually impaired people but I do not like mountains with rocks all over the place or deserts with rocks all over the place, I don't enjoy that. I do enjoy the snow, it was like having two white sticks with the ski poles and I think I'll be back on the snow doing some other expeditions.

White
The publicity issue is quite an interesting one. I mean some people have said you didn't get enough, other blind people, you probably know now, rather object to the idea of the sort of triumph over tragedy publicity, what's your attitude to it?

Pollock
Many, many people don't think that anyone who's visually impaired can do anything, so if they see that someone is doing something that they would find difficult themselves there's going to be an interest factor there and that's just a fact of life and I don't think our team can be worried that we didn't get enough. One of the Norwegian guys on the team sort of posed a question to me - is doing something like this maybe setting the bar at a level that is saying to other blind people you have to go and do these things - he didn't have an answer and I'm not sure I have an answer. But it's something - it's something to discuss and I'm not saying that everyone has to go and do these things, it's just happened to be right for me.

White
Mark Pollock with some musings from Heathrow. By the way they came fifth out of six in the race. But I don't think that mattered to them too much.

And this e-mail from Alex Scott is another illustration of how varied people's attitudes to visual impairment can be and how little we can be lumped together. After hearing Ian Macrae last week express his lack of interest in items about potential if somewhat distant cures for blindness, Alex sent us this:

E-mail from Alex Scott
As someone in my late 40s who experienced major sight loss because of glaucoma I was fascinated to hear last week's report on stem cell research and optic nerve regeneration. More of this please. To even question whether we want information about these important developments, no matter how far off real and effective treatment may be, shows there is a double standard in operation. In Touch seems to forget about people who've become blind as adults and who have lost their sight after years as sighted persons. Instead it seems to concentrate on people who've been blind since birth. Sometimes those of us who have known what it is like to see and would like to regain that lost sight are made to feel like poor relations.

Do let us know what you think about either of those issues. Items about cures and treatment and the amount you'd like to hear about them and also about the value of the extreme physical challenge to the image of blindness.

And now for another distant prospect which could be coming a little nearer. For decades we've been told that electric cars are greener, cheaper and quieter. Somehow though they've never really got off the ground have they. But suddenly with the volatile cost of fuel and a president in the White House who seems to take green issues seriously it's very much back on the agenda. But not everyone's happy. The lack of noise worries visually impaired campaigners in the States. And if you want to tell the difference, where else to go but to BBC Television's Top Gear. Here's an equally noisy Jeremy testing the Porsche Carrera GT.

Clip from Top Gear

And this is the electric high performance car the Tesla Roadster.

Clip from Top Gear

So the screeching tyres there just a reflection of the way that Top Gear and Jeremy Clarkson, in particular, like to test their cars. Chris Danielson is from the American National Federation of the Blind in the United States, he's based in Baltimore. Chris, how great do you think are the dangers?

Danielson
The National Federation of the Blind is very concerned about the danger of these vehicles. We have tested these cars with blind volunteers listening for them and we are not able to hear them when they are running on their electric motors. Now so far we've only tested with the hybrid cars, which are the most popular vehicles that use electric technology, and of course they also have a gasoline engine. So there are times when you can hear them but when the gasoline engine is turned off you can't hear them at all. And this has also been scientifically verified by a perceptual psychologist Dr Lawrence Rosenblum at the University of California at Riverside.

White
But is this a future worry Chris, I mean have there been any serious accidents to visually impaired people as a result of these cars?

Danielson
Well we're not sure that we can verify at this time any accident where a blind person has been seriously injured or killed. We do know that there have been close calls - blind people have reported having their canes run over by these vehicles. And we do know, for example, that they're dangerous even to sighted people. Last May a young boy in Minnesota was riding his bicycle and did not hear one of these vehicles and he wound up on the windshield of the car. Fortunately it wasn't travelling very fast and he was not seriously injured but he definitely didn't hear the vehicle and so he collided with it.

White
So how common are they in the States at the moment?

Danielson
There are hundreds of thousands of them on the road at this point and of course that's a very small number when you compare to the total number of cars. But as you said with environmental concerns coming more to the forefront now and these kinds of vehicles becoming increasingly popular and of course completely electric models coming on the market eventually this could become a major issue. And what we're trying to do is to make sure that a solution is in place before these cars proliferate to the point where the danger is very common.

White
What's the attitude of the manufacturers because as we know there is a breed of motorist who likes their cars to make a noise - the boys on - and very much Top Gear is a bit of a boys' toys programme - and they're not untypical of quite a lot of American car users are they?

Danielson
There's sort of two camps - there's people who like for their vehicles to make a lot of noise and then there are some advocates who say that it would be nice if vehicles were completely silent. What we're advocating is something in between the two extremes, we're not saying that cars need to sound like they did 20 or 50 years ago or like they do on Top Gear but we are saying that they need to emit some minimum level of sound and that needs to be scientifically established. We're still working out how the exact solution will look but we have had conversations with the auto manufacturers and those conversations are going very well.

White
Is it just people with a visual impairment or are there other road users involved in your campaign?

Danielson
All pedestrians to a certain extent listen for traffic, we are all hard wired instinctively to listen for approaching sounds and this is one of the reasons that we're told when we're children to stop, look and listen before we cross the street. This is going to have an effect on other pedestrians, on people who ride bicycles and other people who use the roads who don't happen to drive.

White
Chris Danielson thank you very much indeed.

Your comments welcome on anything in today's programme. You can make them by calling our action line on 0800 044 044 or of course by e-mailing us via the website, just go to Radio 4 and then to In Touch. And you can download a podcast of the programme as from tomorrow.

That's it from me, Peter White, my producer, Joe Kent and the team, goodbye.


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