The response to the open letter

You may remember we sent an open letter to the CEO of Sign Health, Steve Powell?  You’ll be pleased to know we had a response.  Their response is below, and I quote:

Dear Sara and the Tree House team

Steve thanks you for your letter, and for your interest in the work that we’re doing. He’s asked me, as the person responsible for the project, to reply.

SignHealth has been working for Deaf people for nearly thirty years, and the charity is proud of the improvements and services it’s produced. We’re also painfully aware of all that still needs to be done in many areas, including access to information.

In an ideal world all information would be available to all users in a form they can easily use and understand.

As part of our efforts to move closer to that ideal, SignHealth tries to lead by example. Our website is offered in English and BSL. Our leaflets have QR codes leading to BSL clips, which sign the content. Aside from our health clips, our recent videos are almost without exception signed and subtitled.

We do this so we can ask others to look at their own websites and publications, and ask themselves if they are truly accessible to all. A surprising number of sites for or about D/deaf issues are inaccessible to BSL users.

At present, the BSL health videos we make are not subtitled. That is because they are a special case, and I will explain why.

A year ago the NHS Choices website had only 10 health videos in BSL.

The Sick Of It report showed that a lack of information was one of the reasons that Deaf people are more likely to have poorer health than hearing people.

So, we decided to do something about it. We set out to give people who use BSL as their first language a source of information, which will allow them to understand health issues and to make choices about their own health.

For most of those health conditions, this is the first time that information has been available in BSL.

All of the information we provide in the videos is already freely available elsewhere. They are all covered on the NHS Choices website, where all of the topics are already covered in captioned videos.

As a charity we rely on donations to carry out our work. Before we make a video we have to raise the money to make it possible. So we are using the grants we are given to make as much information as possible available to BSL users, who until now have had no access to information. We do it in the knowledge that people with other communication needs can get that information from the NHS already.

With sufficient funds we would love to be able to provide a large BSL health library which included subtitles too. The truth is we are struggling to find funding to do the work that we are doing already.

SignHealth works to improve access and healthcare for D/deaf people, and we provide services where that is the best way to make progress. We use our limited resources to work where there is the greatest need, and often that is in the BSL using Deaf community.

The work we do is not perfect, but we do the best we can with the resources we have.

Our BSL Healthy Minds, DeafHope and InterpreterNow services are predominantly for BSL users, but they are accessible and available to oral deaf users too. InterpreterNow is working hard to broaden its services so that they are available to all D/deaf and Hard of Hearing people too.

We’ve worked closely with the NHS on the new Accessible Information Standard (1605). We’ve asked them to fix the problems that our Sick Of It study revealed when it researched the healthcare of BSL users. But, we’ve made sure that the solutions benefit all deaf people, and even hearing people with other disabilities.

You say in your letter that you would like to support SignHealth, and we are pleased to know that. We work closely with a wide range of D/deaf organisations, and co-ordinating and combining our efforts makes us all stronger.

Although our approaches and priorities vary we are all working towards a common aim. That is improving access for D/deaf people.

Let’s do that by supporting successes which move us ahead in even the smallest way.

Yours,

Paul Welsh
Director of Communications.

Your thoughts?  The PDF copies of the original letter are shown below should you need to see them.  Anyway, please let us know your thoughts.  Comment away!

Sign_Health_1_of_2Sign_Health_2_of_2

Disabled Parking.

Some of the troubles the deafblind have to face – that even we are not aware of just as much, ourselves.

Parking like this is a hindrance, endangers and disables pedestrians using their guide dogs from safely walking on by.

She says whom I quote:

“I have asked my husband to film this for awareness to show how blocking pavement affecting us and evidence. The great way to raise awareness about parking on pavement blocking us, it’s forcing us to get on the road. In the fact, I’m deafblind I’m never able to know if another car is about to come, my guide dog refused to go through the gap because it’s too narrow, it’s very unsafe for visual impaired people with guide dogs, and other people with any assistant dogs, prams, wheelchair. Please be considerate and be kind not to park your cars on pavement. Feel free to share video thank you.”

Disabled Parking.

Disabled Parking.

Hence the title, “Disabled Parking” simply because they cannot park – correctly.

Another friend remarked how the other day, after seeing the above video which demonstrates one of the daily frustrations the deafblind community faces:

There was a van parked on pavement of a quite busy road, there were a chap who lives near me who has blindness and uses a guide dog, last night I was walking Boris and I saw his dog refusing to go anywhere, I asked if he’s alright, he said the dog won’t go further or go in a different direction (because he only knows this specific route to home and he uses this route every day), I said there’s a van on the pavement and he said “But the road is very busy too!” So I assist him different way of getting home without having to go through the traffic. He was very grateful, I left a note explaining the situation and said if it happens again the police will be called on the van (and photo taken with date on it!”

Show us you care by being aware!

~ SJ (Sara Jae)

The Misconception of Deaf People’s Hearing Perception by Daniel McManus

In response to this article in the Independent of the moment deaf woman Joanne Milne is overwhelmed as she hears for the first time after having cochlear implants switched on and;

Additional links for your info Why You Shouldn’t Share Those Emotional ‘Deaf Person Hears for the First Time’ Videos and the Daily Mail’s article which shows Joanne Milne wearing hearing aids as a child, also here are the subtitled versions of the BBC broadcast, part 1 and part 2 which William Mager and Craig Crowley take part in a discussion about cochlear implants sparked off by the emotional video of a woman who had her cochlear implant switched on.

While this, luckily, is clearly a very positive experience for Joanne Milne, it’s most likely that she HAS heard sounds before but with a pair of analogue hearing aids (as is standard practice for all deaf people), and this is the piece of information that many news publications seem to conveniently omit and so this misleads the audience into thinking that she had never heard any sounds before whatsoever [only the ITV News mentions this, it seems]. The quality of the analogue hearing aid, however, was low since this was first designed in the ‘80s and ‘90s as an improvement from the much older versions of hearing aids decades before. Hearing sounds for the very first time would actually require Joanne Milne to gain natural acquisition of speech and environmental sounds during the critical period of her life which would be between 0 and 2 years. And most people who have been deaf since birth do not have that privilege. Instead, they are introduced to hearing aids and are taught to recognise sounds through speech therapy at school—this is why Joanne is able to understand the nurse’s speech with little difficulty in the video and why she is able to recognise that the nurse’s voice is high-pitched.

The analogue hearing aids are analogous to a blurry photo lens and the cochlear implant a clear lens. When you have a CI you hear much clearer and more detailed sounds – like the rustling of shirts, the gentle scrape of a hairbrush as it runs through your hair, certain speech sounds (especially the sibilants, like the s, sh, ch, ts) – all the “small” sounds that cannot otherwise be picked up by analogue hearing aids. This is why Joanne Milne is overwhelmed.

Her experience of hearing sounds for the first time isn’t the first. Many deaf or deafened people who have cochlear implants have had varied experiences of hearing sounds for the first time after having had low-quality analogue hearing aids for a while, some positive, some negative. CIs (cochlear implants) don’t always work for some people because the severity of their deafness varies from person to person and medical professionals use criteria tests to determine whether CIs are suitable for you. For example, I’m deaf with significant residual hearing so this means that CIs are not suitable for me so I only wear a digital hearing aid (this is the modern version, an improvement from the analogue one), but for some people who are deafened as a result of trauma or disease, CIs may be suitable for them if they wish to have them.

In the deaf communities worldwide, CIs are actually an extremely sensitive subject. Some people view them simply as a way of making big profits for medical professionals – CIs are jaw-droppingly expensive (but free on the NHS in this country) while the outcome of this for deaf patients is not always positive or beneficial. Potentially fatal complications following operations can occur, such as the tragic case of an infant who died following an operation in Germany, and there is an increased risk of contracting pneumococcal meningitis if you are not immunised against it. For some people, CIs simply fail because medical professionals overestimate the benefits in term of language acquisition where this depends on the patient’s ability to learn to understand speech sounds—remember that learning new sounds much less distinguishing them is much harder the older you get, or social inclusion where some medical professionals and opponents of sign language believe that only speech and not sign language would benefit the patient’s language and social development when in fact this is not always the case. Furthermore, some people strongly object to medical professionals who advise parents to have CIs on their infants because at this age infants cannot make their own decisions and as a result when they are adults they may be resentful.

From my point of view, it is interesting to see Joanne Milne’s not-so-unique case in the media spotlight much to the curiosity of the hearing majority (and I can clearly see why – she took a huge gamble on CIs because if the operation had failed then she would NOT have been able to use her old hearing aids again and the double whammy of both complete deafness and the progressively worsening blindness as a result of her incurable Usher syndrome would be devastating) because for us in the deaf communities getting a CI is nothing more than simply statistics, and, at the same time, it is also interesting to see how we never, ever seem to see deaf patients’ bad experiences in the media spotlight because CIs have always been dished out to deaf patients for decades, and with very mixed outcomes…

By Daniel McManus.