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IN TOUCH 鈥� The Accessibility of Covid Information; The Helen Keller Doubters

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TX:听 16.02.2021听 2040-2100

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PRESENTER:听 听听听听听听听 PETER WHITE

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PRODUCER:听 听听听听听听听听听 MIKE YOUNG

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White

Good evening.听 Tonight, the legal challenge aimed at forcing the government to provide visually impaired people with accessible information linked to the pandemic.

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Clip

We鈥檙e nearly a year down the line in this pandemic and still the government haven鈥檛 put into place systems which would allow them to record people鈥檚 communication preferences where they are blind or partially sighted.

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White

And the famous life of the American deafblind author and disability rights activist Hellen Keller is well documented, so why have doubts emerged online, particularly amongst younger people, that cast doubt on all she achieved?

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Clip

The discussion is really around like can disabled people do anything and really anyone who鈥檚 blind or deaf or both or mute cannot do all the things that everybody else can do.

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White

More on Helen Keller a little later.

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But first, we鈥檝e heard a lot in recent weeks about your concerns over the inaccessibility of information sent to visually impaired people relating to coronavirus and other health issues.听 You鈥檝e told us about unreadable letters and leaflets dealing with both covid testing and vaccinations.听 Amongst the latest emails to reach us comes this from Jane Sellers.听 Jane says:听 鈥淚 want to point out that the leaflet you receive after having had the vaccination is inaccessible due to its font size.听 And there鈥檚 no provision or offer of alternative formats.听 I was just given this leaflet and, as a totally blind person, there isn鈥檛 any way that I can read it.听 I just feel that blind and partially sighted people are being left out in the cold once again.听 Who鈥︹�� Jane says, 鈥溾��is going to do something about this?鈥�

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Well, we are trying Jane but perhaps Sarah Leadbetter is trying harder than we are.听 Sarah is taking legal action against the government over the fact that they didn鈥檛 give her accessible information on shielding.听 She鈥檚 now been granted a judicial review in the High Court and she joins us.听 Sarah, first of all, just so we鈥檙e clear, explain why you are classed as clinically vulnerable.

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Leadbetter

Yeah, I鈥檝e got an auto-immune disease, it鈥檚 a rare genetic condition, called Bardet-Biedl syndrome that affects my immune system and my eyes and lots of other things as well.

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White

And so, what was wrong with what they sent you?

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Leadbetter

It was completely in hard copy print, which I couldn鈥檛 read for myself and I had to wait for somebody to realise what the information was and what the letter was and tell that person to read it to me, which could be totally weeks down the line with important information on not knowing what鈥檚 going on.

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White

So, how in fact did you discover that you were on the shielded patients鈥� list in the first place?

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Leadbetter

Well because my mum had the same letter, she鈥檚 disabled herself, she realised what the letter was and said oh, could you read it for me.听 Well, that was two to three weeks down the line.听 I can鈥檛 read any print whatsoever; I have to use voiceover or assistive technology.听 She would not have read any letter or open any letter without my permission and that鈥檚 why it took so long to read the information to me.

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White

Now you want to be kept updated by email or with audio files on any health issues, so how has that worked for you in the past?

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Leadbetter

I鈥檝e never had it in the past, I just keep asking so I can have it done because the GPs and my NHS Trust were not 鈥� it鈥檚 not private enough to actually send out emails or audio files with important information to me.

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White

So, they鈥檝e all refused emails, for example, what, on security grounds?

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Leadbetter

Yes, on security and on privacy because they think it鈥檚 easy for people to get into it and find out what the information is and it won鈥檛 go straight to me and be read out by my phone and by voiceover.

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White

Right, now let me bring in Kate Egerton from Leigh Day, they鈥檙e the solicitors acting for Sarah in this case.听 Now you鈥檙e citing the Equality Act and the NHS Accessible Information Standard in your arguments, which we鈥檝e talked on the programme about before, on Sarah鈥檚 behalf, so, what are you saying this entitles her and other visually impaired people to in the case of information?

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Egerton

So, we鈥檙e arguing that the Equality Act requires the government to make reasonable adjustments to its policy on sending out hard copy letters regarding shielding and that requires the government to identify people who have communication needs to record those needs and to make sure those needs are met by sending out communications in an accessible format.听 And it鈥檚 very similar arguments under the Accessible Information Standard, which requires public bodies, when they鈥檙e sending out information regarding individuals鈥� health, to make sure that they identify, record and flag those needs in the case of any communications that are sent out.

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White

Well, we鈥檒l come back to how the government鈥檚 supposed to get this information in a minute but I mean it could be argued that we are facing pretty exceptional circumstances at the moment.听 Why are you arguing that the government should have been prepared for this situation?

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Egerton

Well, this isn鈥檛 the first time and probably won鈥檛 be the last time that the government is communicating with people regarding health issues.听 So, for example, I understand the RNIB have had previous concerns about the accessibility of correspondence regarding screening programmes and I also understand there鈥檚 a bit of pandemic planning that went ahead when there were concerns about the Swine Flu.听 So, this isn鈥檛 the first time and also, we鈥檙e nearly a year down the line in this pandemic and still the government haven鈥檛 put into place systems which would allow them to record people鈥檚 communication preferences where they are blind or partially sighted.

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White

Now the Department of Health and Social Care tell us that they have issued guidance for the clinically extremely vulnerable with information on how they can keep themselves safe during the restrictions and that this, along with a wide range of public health guidance, has been made available in a variety of formats.听 And they say letters detailing shielding advice are also available in a range of formats and are also sent by email where an individual has registered an email address with their GP practice.听 Now Sarah鈥檚 told us that her GP and the health authority that she鈥檚 in are not willing to do this, is it possible 鈥� can the government argue that this information wasn鈥檛 actually available to them?

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Egerton

That鈥檚 right, the government say they have emailed people where they their email addresses but that relies on GPs having up-to-date records, which of course they should but we don鈥檛 think that discharges the government鈥檚 obligations under the Equality Act and the Standard.听 Also, we think this information could and should be available to the government, whether it鈥檚 via the sight loss registers or via a person鈥檚 summary care record.听 We understand that it鈥檚 not going to be a simple process and there might be steps that need to be taken but we don鈥檛 think that that is disproportionate to the benefit that could be gained by blind and partially sighted people to having their communication preferences identified and then met in the provision of important correspondence regarding their health.

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White

So, you鈥檙e saying that there are plenty of other sources from which they could have got this information?

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Egerton

Yes, I mean we鈥檙e not 鈥� we鈥檙e not experts but it seems to us from a fairly straightforward search of how NHS Digital works and also the information that鈥檚 available to local authorities via certificates of visual impairment which obviously records someone as being registered as having a sight impairment but they also record people鈥檚 communication preferences.听 So, we think that information is available, it鈥檚 just the government needs to make steps to identify where that information is and then pull it into their shielding patients鈥� list.听 So, we don鈥檛 think 鈥� we certainly don鈥檛 think it鈥檚 impossible and we think it鈥檚 achievable and would be very beneficial to a lot of people.

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White

Sarah, can I just ask you?听 I mean are you now, after this experience, are you still pressing your GP and your health authority to make this possible?

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Leadbetter

Yes, yes I am 鈥� yes I am, I keep asking them can I have it in audio, can I have it in email but for some reason our NHS trust and our doctors will not just have email as a form of sending out information to you and won鈥檛 even take my email address.

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White

I just finally want to go back to Kate.听 Just remind us what can a judicial review actually achieve? 听I mean is this likely to be just a gesture or can it bring about real change?

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Egerton

Yes, it can certainly bring about real change.听 So, a judicial review is a challenge against a decision by a public body and the judge, here in the case, has a wide range of powers.听 What we鈥檙e asking for in Sarah鈥檚 case is for the judge to make an order declaring that the current scheme is unlawful and also an order mandating or requiring the government to put in place a different scheme which meets its obligations under the Equality Act and the Accessible Information Standard.

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White

So, really what you鈥檙e trying to do 鈥� this isn鈥檛 going to help Sarah in this individual case 鈥� what you鈥檙e trying to do is make sure this doesn鈥檛 happen in the future?

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Egerton

Yes.听 Well, we hope that throughout the course of the current pandemic that the government will put into place a scheme that is lawful and, as I explained earlier, I think, this could be really important in terms of the way the government communicates with people with disabilities in the future.

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White

Kate Egerton, Sarah Leadbetter, thanks very much indeed.

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And we will, of course, keep you up to date with what happens about that judicial review in the High Court next month.

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And thanks for all your comments about last week鈥檚 programme where we looked at the delays in adding audio description to On Demand TV box sets.听 Channel 4鈥檚 All 4 service and the 鲍鱼tv鈥檚 iPlayer team said that they would try to get AD rolled out faster when a new box set was made available so that we could watch it at the same time as everybody else.听 Well now we鈥檝e heard from Andrew in Cornwall, emailing us to add ITV to the list.听 He said: 鈥淚鈥檓 watching the new series of Finding Alice, audio description is very good on the live broadcasts, so definitely exists for this programme but then when it鈥檚 online via the ITV Hub, the very next day, it doesn鈥檛 have AD.听 Very strange,鈥� says Andrews, 鈥渨hy is this?鈥�

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Well, we put your question to ITV, they told us: 鈥淎udio description should be available on the Hub to coincide with the programme鈥檚 time of broadcasting.听 Recently we have been trialling several full episode drops on the Hub allowing for complete series to be made available to viewers so that they can watch in one go, before broadcast transmission.听 We鈥檝e been actively working to extend the availability of our audio description and anticipate that going forward any new dramas that appear on the Hub in their entirety will feature audio description.鈥�

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Well, it seems that everyone is promising improvement, do continue to let us know where it is and isn鈥檛 being achieved, whether it鈥檚 broadcasters or streaming services.

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Now the American deafblind author and disability rights activist Helen Keller left a remarkable legacy.听 She lived from 1880 to 1968 and overcame the enormous challenges of losing both her sight and hearing before she was two years old.听 She went on to learn to speak 鈥� here鈥檚 a little of her doing just that from our archives:

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Archive 鈥� Helen Keller

It is not blindness or deafness that brings me my darkest hours.听 It is the acute disappointment in not being able to speak normally.听 Longingly I feel how much more good I could have done if I had only acquired normal speech.

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White

Helen Keller went to Harvard.听 She wrote 12 books and travelled the world.听 But now a conspiracy theory seems to be calling her achievements, even her very existence, into question.听 It鈥檚 often teenagers who鈥檝e been doing this using social media platforms like Tik Tok.听

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Selina Mills, a visually impaired writer and historian, has been filling me in.

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Mills

So, the bottom line is 鈥� and the line that鈥檚 been retweeted and re-Tik Toked 鈥� is Helen Keller was a fraud.听 And if she did exist there is no way that she could have written 12 books, travelled the world, did all the things she did.听 It鈥檚 just a complete discussion and negation of her life.

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White

Now it may not seem very funny but I gather this may have all started as a joke, but it鈥檚 widened out into a conspiracy theory, hasn鈥檛 it, that鈥檚 been widely reported in the national press.听 How can a woman, who is so well documented, photographed alongside US presidents like Eisenhower and JFK, how can she end up having so many doubts cast around her existence?

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Mills

I think there鈥檚 a younger generation that hasn鈥檛 learnt how to discern and look at evidence and data and historic well-documented information.听 The second thing, is ableism, the discussion is really around like can disabled people do anything and really anyone who鈥檚 blind or deaf or both or mute cannot do all the things that everybody else can do.听 And I think that is what鈥檚 sort of perpetuating this at the moment 鈥� 600,000 people shared this piece of information that she didn鈥檛 exist.听 So, I think that is the worrying thing 鈥� the second, albeist take.

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White

And this is not a new thing, I mean even in my own humble way, when I started to broadcast, I got people writing in saying 鈥� you can鈥檛 really be blind 鈥� and that鈥檚 because I was able to read reasonably fluently.听 I mean there does seem to be this resistance somewhere in people鈥檚 nature to the idea of disabled people achieving things.

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Mills

It鈥檚 really shocking.听 I thought about is it even worth talking about it because you鈥檙e perpetuating the myth by giving airtime, so to speak, but actually the worst thing about this is we鈥檙e talking about you and me, we鈥檙e saying we cannot do things but obviously we can.

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White

I鈥檝e seen the suggestion and it鈥檚 quite an intriguing one, that the people who do this are actually immensely insecure and feel embarrassed by the fact that disabled people have achieved so much more than they have, do you give that any credence?

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Mills

I鈥檓 not sure if it鈥檚 helpful to compare and contrast, I mean I鈥檓 very sorry if they are insecure and I鈥檒l send them on a course.听 I feel there鈥檚 something very fundamental here which is you don鈥檛 get to decry the achievements, small or big, of any disabled person, full stop, it鈥檚 just wrong.

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White

Would you like to see a tougher approach or is this actually more about education?听 I mean what 鈥� there鈥檚 a lot of discussion going on now about restricting what can be said on these websites 鈥� would you go down that line?

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Mills

No, actually I wouldn鈥檛 because I think it鈥檚 fine for us to talk about it and challenge it.听 I do think education is really important and Tik Tok did actually come out and say we will not support this and we will take down any misinformation.听 So, I don鈥檛 think we have that job.听 But I do think we need to think about how we are telling disability stories and the inspirational versus the burden are no longer valid, we鈥檙e just people getting on with our lives.听 And I think there鈥檚 an education issue here.

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White

Of course, Helen Keller was a political figure in her day, she was a campaigner, she was quite controversial.听 I mean she鈥檚 not above criticism, is she, in the same way that any political figure would not be above criticism?

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Mills

I totally agree with that and I think one thing to bear in mind is that there were critics of her in the day, including the FBI, who had her on their list and a lot of her editors and publishers refused to let her write about things like apartheid, she was only allowed to write about blindness because, quote, 鈥渢hat鈥檚 what sold鈥�.听 It鈥檚 like any historical figure, you look at the evidence, you look at what鈥檚 around, you look at letters, diaries, whatever there is and you make your decision based on historical facts and evidence, you don鈥檛 make your decision based on a rumour or gossip.听 It鈥檚 very disturbing that this got so much traction just based on some kids having a laugh.

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White

That鈥檚 Selina Mills.

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And that鈥檚 all we鈥檝e got time for this week.听 Do let us know what you think about anything at all you鈥檝e heard in the programme.听 Our email is intouch@bbc.co.uk and you can go to our website for additional information or to listen again to tonight鈥檚 and previous programmes.听 From me, Peter White, producer Mike Young and studio managers John Cole and Philip Halliwell.听 Goodbye.

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