Rita Simons and informed choice


Since everyone else is having their say on last night’s BBC documentary Rita Simons: my daughter, deafness and me I thought I would slip in my tuppence.

Firstly, that I thought the whole thing really demonstrated the importance of informed choices. Every deaf child is different. My sister is deaf and what worked for me didn’t work for her and vice versa. There’s no right “solution” for every deaf child. Parents of deaf children need access to expert, unbiased information to help them decide what’s going to work for their deaf child.

Despite this, throughout the whole programme, Rita was surrounded (intentionally or not) by people who were telling her she must do this or musn’t do that. The worst example was of the “Deaf community” telling Rita that cochlear implants were tantamount to abuse. I felt Rita showed considerable restraint; I would have probably chucked my pint over whoever said that, for their tactlessness and insensitivity towards a mother dealing with raw emotions.

(I put “Deaf community” in inverted commas because it wasn’t representative of the Deaf community I know or want to know)

She was also given information by professionals that was incorrect or misleading. I’m not an expert, but it’s not inevitable that children with Pendred Syndrome will lose all their residual hearing (I say this as someone with Pendred Syndrome myself). And not everyone with a cochlear implant is going to be nattering away on the phone. Cochlear implants are not a cure for deafness.

It was a shame that Rita didn’t get the opportunity to speak to more deaf young people with slightly less extreme views or to see how deaf children fare in mainstream settings. Whether this was by design or just the producers looking to make good telly, rather than balanced telly, I’m not sure. It was also a shame Rita also seemed oblivious to the information and resources available by the National Deaf Children’s Society whose reason d’etre is to ensure parents like Rita are exposed to all the facts and information they need. Their statement on the programme sets out the importance of informed choices far more eloquently than I ever could.

And more importantly it was a shame that other parents of deaf children might have been left with a skewed view on the options for their child. A real shame.

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What an ill chicken tells us about deaf access to universities and colleges


Sorry, I didn’t do a blog yesterday, my chicken was ill.

If you haven’t a clue what I’m talking about, then clearly you haven’t yet watched the BBC3 documentary, Deaf Teens: Hearing World, nor been aware of how a sequence involving a notetaker explaining she couldn’t support a deaf student for a whole 2 hours because her chicken was ill exploded onto the deaf community’s consciousness. Charlie Swinbourne’s blog explains how this quickly went viral, with a Facebook group attracting 1000 members in less than 24 hours and tweets abound using the #deafteens hashtag.

How did it pick up so much attention? Well, frankly it’s the most ridiculous (and hilarious) excuse I’ve ever come across for communication support failing to come through. Secondly, behind every brilliant joke is a regrettable knowing truth. In this case, that knowing truth is that deaf young people are rarely in control of their communication support at college and universities and too often are left to fend for themselves. The sequence hit a real nerve.

On the programme, this was the deaf teen’s first day at university and somehow they still managed to cock up (no pun intended) her communication support by not checking whether her notetaker could stay for the full 2 hours. Not exactly an auspicious start. In a further epic fail, another student on the programme at a different university on her first week was forced to lipread a lecturer in a dark room. My own experiences at university weren’t much better – I had to arrange my own provision and my “communication support” were often other students trying to make a quick buck. It also took around 9 months for my council to sort out my Disabled Students Allowance.

I’m sure there are a lot of good intentions out there. But a lot needs to change before deaf young people can be confident they’ll get the help they need at colleges and universities, without having to rely on the good health of chickens or other random occurrences.

The documentary, by the way, was brilliant and must-see viewing for anyone wanting to understand the experiences of deaf young people.

Hands up for help on the telly

The BBC2 programme See Hear featured the National Deaf Children’s Society Hands up for help! campaign this week. It was a great summary of what the campaign is all about and included some good vox-pops, such as one from a deaf young person on why her visiting Teacher of the Deaf is so important. It also included a cute deaf baby if you like to go “awwww!” at such things.

Image courtesy of http://www.bbc.co.uk

One of the Mums was from Hillingdon in London and See Hear went on to interview a man from the council. He basically admitted that the council doesn’t provide better support because it doesn’t have the money. So there you have it. If you’re a deaf child in Hillingdon, you’re probably not getting a fair chance to achieve. And this situation is being repeated all across the UK.

If you’re angry about this, you can contact your councillors using NDCS’s fancy thingybob to demand they, at least, maintain spending on help for deaf children. At a time when lots of councils are making cuts, the situation in places like Hillingdon could get even worse.

Oh, and you can watch the See Hear programme online. Let us know what you think by leaving a comment below.

Memo to the BBC: your promotional DVDs…

If you are going to send me – a deaf person working in a deaf organisation in a role that involves campaigning for the rights of deaf children and young people – a marketing DVD about “oustanding children’s content” from CBeebies and CBBC, along with a covering letter that states BBC has a responsibility to produce content “in a language and style our young audiences will understand”, you may want to consider putting subtitles on the DVD.

Just a thought.

UPDATE (8/10/10): Following this blog, the BBC sent me a very nice email apologising and explaining that the DVD was a limited print run of DVDs for key stakeholders, and that all programmes shown were subtitled when shown on TV (as is all BBC content on their main channels) and on commercially available DVDs. I’ve also been promised another DVD with subtitled content. It’s much appreciated that the BBC have taken the time to respond in this way.

Radio programme about deafness – (not) accessible!

Image courtesy of www.bbc.co.uk
UPDATE (3.15pm)

Well, turns out it wasn’t accessible at the same time as broadcast on the radio after all. Signed version and a transcript will follow “later”. I’ve cancelled the warm fuzzy thoughts. Not quite sure I understand the point of trumpeting something as accessible if deaf people can’t access it at the same time as everyone else. A real missed opportunity and rather just highlights how deaf young people and adults are treated as second-class citizens by our media.

Maybe I’ll ask the TV licensing people if they mind if I pay my licence fee “later”…

Original blog (9.40am):

Word reaches me that BBC Radio 4 will be showing a programme about deafness this afternoon THAT WILL BE ACCESSIBLE TO DEAF PEOPLE. How modern!

Apparently, signed interpretation and a transcript will be on the web at the same time as broadcast on the radio. If true, it will be fantastic and make a really refreshing change. I’ll be tuning it and hoping it’s a good one. But in the meantime, warm fuzzy thoughts to the BBC today.

Let us know what you think of the programme. Below is some more info about it:

A Small Piece of Silence

Today, 14:15 on BBC Radio 4

Synopsis

A Small Piece of Silence by Katie Hims

A Small Piece of Silence started out in a very different way to most radio plays. After David Bower’s striking performance as Quasimodo in Radio Four’s production of The Hunchback of Notredame, the producer Susan Roberts suggested a contemporary play be written specially for him. After many initial conversations with David who plays the lead character Joe in the play, Katie Hims’ story began to emerge.

In A Small Piece of Silence, Joe who has been Deaf since he was born , works in an ordinary council office . Every day he makes the same journey to work on the bus, seeing the same people . Then one day a young girl signs her name to him. A_N_G_E_L.

Joe has been working in the council’s housing office for 17 years. Apart from one small promotion he has remained in the same job surrounded by the same people . Vernon has been there for the same amount of time. He eats Joe’s food and talks too fast in the pub ..but Joe goes along with it.

Into their world comes new office recruit Shelly who begins to fall for Joe. Until Joe realises that she is having a relationship with Richard Humble , the leader of the council

At the end of Shelly’s first week there is a huge fire in a nearby block of flats. Joe learns that Angel was one of the people who has died.

And so Joe’s life is changed forever as he embarks on a quest, turning detective to find out what has happened.

A Small Piece of Silence is a love story, detective story but, using sound, it attempts to give us a picture of the world of someone who can’t hear. It examines the issues around how society deals with Deafness through the character of Joe.

Cast
Joe ….. David Bower
Shelly ….. Maxine Peake
Vernon ….. Ralph Ineson
Brigitta ….. Deborah McAndrew
Marion ….. Ruth Alexander-Rubin
Richard/ Bus Driver ….. Terence Mann

Music composed and performed by Liran Donin

Artistic consultant Isolte Avila. Developed in partnership with Signdance Collective.

Directed in Manchester by Susan Roberts.

Liran Donin provides specially composed music and a soundscape that illustrates Joe’s view of the world. Joe suffers from Tinitus. Liran, underscores this condition in sound.

David Bower is one of the creative directors of Signdance Collective , an international dance music theatre company lead by Deaf and physically disabled dance theatre artists working alongside composer musicians.

Katie Hims’ first radio play, ‘The Earthquake Girl’, won a Richard Imison Award in 1998, and since then her work has never failed to make an impression. In Katie’s world there is a semblance of normality but underneath all that you can be sure is that something strange — and rather magical — is going on. Her most recent work for radio includes 43.59: 45′ original play and FIVE WEDDING DRESSES: 5 x 15′ BBC Radio 4, Woman’s Hour.

Subtitled Youtube access for deaf people

Happy day. Youtube have confirmed there will be automatic subtitling on its English videos.

Back in November, Google announced it would be aiming to do this. Today’s announcement confirms it for Youtube. The story has already been covered on BBC news and the National Deaf Children’s Society has done a statement on it..

It’s not going to be 100% accurate, as no speech recognition software is perfect. Not ideal but I know that many deaf children and adults are quite adept at filling in the gaps and working out what was meant to be said. And, of course, telling everyone about the funny bloopers. My favourite blooper is when someone on TV said “Help yourself.” The subtitles reported it as “Help your elf.” I still chortle thinking of it.

Anyhow, the Youtube announcement now puts the pressure on others to follow suit. I won’t name names because everyone knows about my grudge against the BBC’s lack of online subtitles, even for stories about deaf people. Some good news as we go into the weekend though. Are others happy about the news too?

Update – BBC’s online video content: where are the subtitles?

A nice man from the BBC emailed me very quickly after I complained about the lack of subtitles on an online video story about deaf children and cochlear implants, which I talked about in my most recent blog. Here’s what they had to say:

I’m afraid we simply don’t have the technology to provide subtitles on online videos, although I know that a limited pilot project is still under way. We could and should have added a transcript but that’s really down to lower staffing levels.

This has been discussed in the past and I admit not much progress has been made. The simple answer is for the people who make the reports in the first place – this one came from Nottingham – to be aware of the issues and to make a copy of their written scripts etc available. Interestingly this is the second complaint on this topic I have dealt with today.

I will take this up and will speak to my colleague who looks after disability issues to see if there’s some way of communicating to all our journalists the importance of providing a more accessible multimedia version of stories such as this.

Many thanks for raising it.

On the one hand, at least they recognise the problem and sound sufficiently contrite.

Still… its depressing that even after at least three people have complained about it, there is still no transcript on the webpage accompanying this story. Deaf children and adults are still being denied access to a story about deaf children, and denied a right of reply if they disagree with the report. And there remains the principle of access to all online video content, and not just those which are of particular interest to deaf people.

Accessibility of online video content is going to be an issue I suspect will crop up again and again. It’s now on NDCS’s campaigns radar and is something I hope to do some research into.

In the meantime, we’ll be keeping an eye out for more examples of inaccessible online video content.

Yours,

A still disgruntled viewer from Bermondsey