I reviewed the Hawking movie….

Some of you may be aware that a Stephen Hawking Documenary is getting a cinema release on 20th September.

If you haven’t seen it – here’s the trailer…

Live for films were kind enought to get me onto a press list to review the movie early – and you can read the full review here (short: the man is more remarkable than the movie)

A quick note – many of you will have arrived here from my twitter feed and so I should point out that the Live for films review is about the film as a film, not as it relates to disability – I should say that I do have some complex thoughts on that one – but I might wait to see what the community reaction is before blogging them, plus I’d like to chat to some  people first.

Visiting the House of Commons

Big ben

So I was at the house of commons this week, meeting with some people from NHS England about AAC supply, largely as a result of my work on the Domesday Dataset.

I’ve not fully digested most of the content of the meeting – so I’ll come back and do a proper full blog post when I have. For the moment, It’s fair to say that I was very impressed with the people: smart, professional, clearly with the patient in mind, but less impressed with the policy being carried out (largely on data collection grounds). One thing that was really clear that came out of the meeting was now necessary advocacy groups are for any form of specialised commissioning.  Indeed – it’s becoming clear that the system relies on their existance as a key part of quality control. I need to so some quite hard thinking about how I feel about this in terms of supply, transparency and healthcare.

Currently, it’s showing me the problem with preperation – I had nicely prepared my talks for
Communication Matters National AAC Conference this weekend, and now I find myself ripping them up and starting again…

Subtitling…. I have questions.

Just been reading the (excellent) Pesky People piece on Doctor Who not having subtitles, or at least not having them turn up at the same time as the broadcast. Worth reading at length but the short summary is:

So imagine my outrage when last year, the Doctor Who Christmas Special, ‘The Snowmen’ wasn’t subtitled on iPlayer. I missed the original broadcast as I was staying with friends and their TV signal was buggered. I tried threatening them, but it didn’t work. I had my heart set on watching the special on iPlayer that night, and I wasn’t prepared to listen to any excuses about the wifi and how long it would take to download; in the end, it took over three hours. Very kind of them to invite me over and everything. Love you, guys.

It wasn’t subtitled. It wasn’t bleeding subtitled!

[…]

Eventually, after four long days, the BBC deigned to subtitle the Christmas Special of one of their most popular shows of all time.

Something that’s always annoyed me about accessibility issues, is that some of them are demonstrably easy to fix. For example I accept that the London Underground is a massive and very old piece of engineering and design, and is going to a significant effort before it’s properly wheelchair accessible – I get that. But I don’t understand how subtitles are hard for a pre-recorded program. In fact, let me take that back a bit, I understand that the timing and the summerisation is a skill, but I don’t understand how it takes more more than say a day for a suitably trained person to drop them in. Anyone?

My contact with deaf/Deaf people is actually fairly limited (Although, my brother does use a sign for ‘Dalek’, I suspect it’s not the offical BSL one) so I’ve got a couple of questions for people, any responses welcome…

  • Is it the case that programs are subtitled when broadcast but then not on the iplayer?
  • Is it regularly the case that programs wait days for subtitles?
  • is there a subtitle fetching API? (one for coders, that one)
  • Live-broadcasts are obviously hard, no question – are the ‘quick’ subtitles at the time worth watching? *and* do the subtitles get better if you watch a (formerly) live event on iPlayer later?
  • How do the terrestrial channels compare? Is ITV/Sky any better?

No one should have a gun, except maybe blind people.

So I get a lot of my disability news from http://samedifference1.com/, which I highly recommend following. One of the posts today was this one:

No One Should Have A Gun License- Especially Not Blind People

A few years ago, I lost a close family member to a gun that was used for no reason.

I came away from that very painful experience with a very strong hatred of guns. I feel very strongly against gun licenses. I feel very strongly that America’s gun laws should be changed. I feel very strongly that no one, in America or anywhere, should be legally allowed to own a gun.

Until now, I’ve never had any reason to write this here.

Today, however, I have learnt that some US states allow blind people to hold gun licenses and legally own guns. Readers, I feel very strongly that if there should be any minimum requirement for owning a gun, it should be full eyesight.

Some disability rights campaigners may disagree with my view. Some disability rights campaigners may say that blind people have a right to do, to own, anything they wish.

Readers, in most cases, I would fully agree that blind people, that all disabled people, have every right to do, and to own, anything they wish.

However, there is something else that I have always felt very strongly about. That is, that in doing anything they wish to do, all disabled people should know their own limits. I have always felt very strongly that disabled people should never try to use equal rights or disability rights as an excuse to do something that puts themselves, or anyone else, in serious danger.

[…]

My personal opinion is that America’s second amendment law needs to change for everyone. However, if that can’t happen, then at the very least, the states that allow blind people to own and carry guns really need to change that law.

I strongly disagree with Ian Macrae, editor of Disability Now, who feels it should not be society’s job to say that blind or disabled people should be excluded from doing something because it is too dangerous.

 

I argree, as I usually do, with the vast majority of SD’s opinion. But I’d like to put forward another side to the debate, simply because it’s a nice oppertunity to have a rational discussion about stuff that people rarely get to be rational about.

My (current, I am open to persuasion) position is as follows – I find the US gun situation horrifying, but the more I find out about it the less of a solution I can see (for those interested, I find freakanomics to have interesting things to say on the subject, and Nate Silver is practically a personal hero on this). In the UK, I think that fewer guns are a better thing and I recognise that gun crime is a significant problem that needs to be solved, but if you gave me two (highly specific) wishes, then I’d solve UK heroin use and UK alachol abuse before I solved UK gun crime.

But to make an actual point. If my neightbour buys a gun, then there are three things I would worry about.

  1. them shooting me on purpose
  2. them shooting me or themselves by accident.
  3. the gun being stolen and the burgler shooting me on the way out.

I think that, without being overly silly, we can assume that a blind person with a gun not more likely to shoot me on purpose than a sighted person, and so we can dissmiss point 1.

Regarding point 2. I don’t believe that a blind person is more likely to shoot me accidently than a sighted person. If I gun goes off, accidently and unaimed, then sight is not a factor. (they might have pointed it at my by accident, but I suspect that’s as likely as a particularly stupid person waving it in my direction as ‘a joke’). The real question here is ‘Is a blind person more likely to discharge a gun accidently?’ But my first aligence is to science here and so we can check – we can ask questions like ‘Of the number of people who accidently harmed someone with a gun in the US in the last five years, how many were registered blind?’ and if we know that and the proportion of blind gun owners, then we have an ability to make the call.

Regarding 3. Yes, this is real factor. I don’t doubt it. But I don’t think it’s any more likely to happen to a blind person than an elderly person. Again – this is something that actual statistics should be able to help with. Let’s be scentific about this – do people with sight problems get burgled more or less? My gut says less (Possibly out of the house less, perhaps more likely to have an alert dog, often keeps burgler-unfriendly hours), but I’d love to see some data.

So i’d like to withhold judgement until I get some actual data, but looking at the three possibilities, if I have a blind neightbour and a fully sighted neightbour, and one of them is going to get a gun, then I’m probably hoping its the blind one.  I think one gun is one too many, but I think that if we’re going to reason about the pragmatics, we should do so with data.

For your interest here’s the (ironically not screenreaderable) orginal story in private eye.

photo (1)

 

 

Activist dropped by disability charity over offensive tweets (updated)

(For those coming back for a second time – the edit is as the bottom of the article)

From The Disability News Service we have

A disability charity [Leonard Cheshire Disability(LCD)] has had to scrap plans to sponsor a disabled activist to attend the Labour party conference, after it was alerted to a string of offensive messages he sent other disabled campaigners on the social networking website Twitter.

This has been making the rounds on Twitter recently, and I’ve been thinking about it a little. The activist in question, Simon Stevens (@simonstevens74 as it happens) is someone I quite like the existence of. For sure, we would, if we corresponded, disagree about almost everything that it is possible to disagree about including, but not limited to, politics, disability rights, accessibility,  engagement style, and polite use of Twitter, but netherless I pay attention to him, partly because I think ignoring people who disagree with you isn’t a particularly healthy way for a society to function, but also because it is oddly nice to know that the disability community is no more homogenous than any other community.

Regarding some of the facts – there’s an interesting (and I think well recovered from PR standpoint) side to this: the statement by LCD said:

“We have decided to withdraw our support for an independent campaigner attending the Labour Party conference. We made this decision with regret after we had read recent public statements by them.

“The purpose of the Access All Areas programme is to enable campaigners to express their own personal views at conferences. But we have always made it clear to them that this should be done with courtesy and respect for others.”

Which is kind of interesting: the notice appears to say that it’s not Steven’s views that are a problem (they are certainly not mainstream-disability, as a range of bloggers have noted) , or the reactions of other people with disabilities to the idea of him in some sense representing them (which have been… forthright) , it’s that he expresses them in an impolite way. Which I think says are remarkable amount about british culture in its right…

For interest, the text of the Access to All scheme is here (it doesn’t mention representing the community as a whole). It’s also worth reading the Kittysjones piece on the subject, (which gets bonus marks for quoting and linking to sources).

EDIT – 1 month later,

I’m updating this piece because Simon has made his side of the story known…. and has put forward a campaign. I’m going to applaud several things about this.  Primarily, he’s put forward (I understand) all of the documents relevent to the campaign, even those that show him in a poor light – and that sort of disclosure is something I’d like to see more of regardless of where one is on the ideological scale.

 

But that’s not the most important thing, the most important thing is that far too many disabled people are ignored, far too many are patronised, and far too many are taught to be content with what they are given. And if there is one thing I can say about Simon Stevens, is that if he thinks he’s being mistreated, he will raise hell.  For anyone with a disability, a health condition,  a vulnerability – I would rather they were disagreeing with me than being silent.

 

Recording communication

Visual of letter sent by job centre

From Skwawkbox I came across a rather sad example of secrecy in bureaucracy. The crux of the issue is that a benefit claimant would like to be able to record their conversations with the officials concerned and the officials don’t like this, to the extraordinary length that they appear to have referred the claimant to a psychologist. The mysteries of the psychologist angel are beyond me. But I am passionate about information, open information, and accessible information. It’s not obvious to me why someone said by a official, while officially discharging their official duties, is not to be recorded. I *can* see why the statements made by the claimant might have privacy implications and why certainly no information should be made public without the claimant’s consent. Does every 100th claimant get given a state secret? (an *actual* reasonable reason might be that one might accidentally record the private conversation going on at the desk next door, but that’s not what’s going on here)

From the point of view of the claimant I can see it might be useful to record conversations for such purposes as:

  • Because you have a poor memory,
  • Because you have trouble reading and writing and struggle to make notes
  • Because the information being imparted about benefits and taxation and jobs is complex and you are more likely to understand on a second listening
  • Because you get the feeling you’ve been screwed around by the system a little much and you’d like to have a record of what’s going on.

For the record, during my PhD I would record supervision meetings/tutorials that I had with my supervisors (with their full advance permission) and found that on a second listen I understood vastly more that I did at the time. I highly recommend audio recordings wherever possible.

And this is were the disability angle comes in properly, because it’s quite hard to have clear-cut issues when one brings in the full spectrum of use cases.  So If I’m not allowed to perform an audio recording, am I allowed to bring along a shorthand typist who will accurately note down every word we say? If I am, then I’ve got an auto-transcription app on my phone – you speak near it and it produces as text the words you said – that’s no a recording, is that okay?

You make thing I’m being silly with this and I am, but I’m heading to a serious point. Because I do a lot of work with Augmentative Alternative Communication AAC devices like these:

For the people who use them, Stephen Hawking is the example that everbody has heard of, they are often the only possible way of communicating. And, in many designs, the automatically log what people have used them to say. So if an AAC-user goes into the jobcentre, are they allowed to use their device to communication? After all they are automatically recording the entirely of one side of the communication…

From Skwawkbox via Samedifference

#remember to do via samedifferenece