‘EU Referendum in BSL Survey’ by Drip Media

The EU (European Union) referendum leaflet is in just written English, large print and audio CD. There are no visual materials for those who rely on sign language hence why, I support this video by Drip Media in trying to gauge just how many people would like to see the same content available to them so they too, can make an informed choice however which way they would like to vote.

Their video is in BSL yet it is captioned to be inclusive of all.

Please complete their survey in order to assist them in achieving what I hope, will be a successful and fair result. This will only take a minute of your time.

http://www.dripmedia.tv/eureferendum

Thank you for your time and patience.

~ SJ (Sara Jae)

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User research with people who are deafblind: it makes Sense by Joanne Schofield

The lovely Simon Hurst​ has shared yet again another link (on behalf of his colleague) with the Tree House dwellers in the hope that we could all share it, comment on it and help them to perfect PIP that bit even more so.

“Often the people who need to use government services the most are those who find it the hardest to do so. They don’t want to interact with us – they have to.

I’m a Content Designer with the team building the digital Personal Independence Payment (PIP) claim, a benefit for those who have difficulties as the result of a health condition or disability.

We want to make the digital PIP claim as effective as possible and I make sure what we write meets the needs of the users clearly, simply and quickly. If you’ve seen the existing paper application form for claiming PIP, you’ll appreciate this is no mean feat.

I recently joined our user researcher, Simon Hurst, at Sense, a national charity that supports people who are deafblind. Deaf-blindness is a combination of sight and hearing loss that can affect a person’s ability to communicate, access information and get around. There are about 250,000 people who are deafblind in the UK, many with varying degrees of vision or hearing.

We met with five deafblind users to get their views on how we could improve our latest version of the digital PIP claim….”

Please visit and comment on the *original source* to read the rest of her entry. Thank you very much.

Joanne Schofield -content designer, DWP

Joanne Schofield – content designer, DWP.

Computer Says No By Rosie Malezer

Rosie Conan

Rosie Malezer

I am a Deaf Australian Aboriginal living in Finland (I am now also a Finnish citizen). On 23.11.2014, I lost my hearing – LITERALLY overnight. I woke up, could hear nothing. My husband spoke and I saw his mouth move, but I heard nothing. I could not hear my cats, the wind blowing outside, the television, my telephone, my alarm to wake me. Not a thing, except for a ringing in my ears. My left ear has louder higher pitched ringing than right ear. Over the past five months, I have been passed back and forth from specialist to specialist, doing many tests (some quite painful) to try and determine what is going on. The Audiologist at TAYS (Tampere Hospital in Finland) advised in November that a Cochlear Implant would not only help me to hear again, but would also remove the ringing in my ears. At all visits, I had my husband and Mother-in-Law with me so that there would be no misunderstandings due to communication. Many hearing tests later, all saying the same thing (I cannot hear, not even through the bone behind my ear) led to diagnosis that I am profoundly Deaf.

Each visit to each specialist, each test, each social worker cost us around 32€ and with well over 10 visits in a five month period, it quickly adds up. The cost was crippling, especially since my Unemployment Benefit was cut immediately on my diagnosis of Deafness and I was instead placed on Sickness Benefit until the hospital could determine what is wrong with my ears. Why can’t I hear? What caused my Deafness? So now, we are buried in hospital bills, but life was made a tiny bit easier when the hospital supplied me with a communication device that enabled me to have a TWO WAY conversation without needing pen and paper. I was also provided with flashing lights in my home to tell me when the doorbell rings. It made things a little bit easier.

After all the tests and the confirmation that I would be receiving a Cochlear Implant in March 2015, I was at peace with the fact that I may never hear again. Being Deaf no longer scares me because I had a support network. I had even let myself be open to the fact that doctors will cut open my head, put a device inside, drill into my skull, thread wires into my cochlear and my brain while hopefully not damaging the nerve that controls my facial muscles. I was ready. And then I receive a letter saying they want me to do one more test. Regardless of how painful it might be, I said okay. I wanted to hear again. I miss my husband’s voice. I miss talking to my family on the phone who live in Australia.

On 11.3.2015, I was led into a small room and electrodes attached to my head. I was then told close my eyes. This is never a good request as I suffer from Agoraphobia with Panic Disorder (since 1996) and panic attacks sneak up on me. But in the past five months, I have found a way to keep them at bay without being unconscious. I have been taking ASL Sign Language lessons relentlessly with a great teacher and have been progressing well with my exams. I decided that I will keep my eyes closed in this final test, but instead of sitting in darkness and letting it take over me in the form of a panic attack, I would sign as much as I could remember without having my papers in front of me with the words. I got through the two hour test (barely) and was quite proud of myself with the amount of words I could sign, as well as the fact that I did not have a panic attack.

The next place we had to be was the Audiologist’s office. She at first refused to use the communication device. Not so professional. Then she used it and typed so badly that I could barely understand what she was saying. Then when she realised that her “mistakes” were crippling a medical appointment that I was again paying for, she suddenly remembered how to spell. She said that the electrodes connected to a computer which showed that my ears were healthy. They reacted to noise which was played through headphones during that 2 hours. Noise I swear on the life of everybody I love that I did not hear. Not a single thing was heard. I told her this and she said I can hear. My husband sat beside her, becoming as angry as I felt, that a so-called medical professional was not hearing MY words. I have not been able to hear a thing except for ringing since 23.11.2014. She shrugged and said “You can hear. The computer told me so.” She then went on to tell me I am obviously crazy and need to see a psychiatrist. I was so hurt, offended, angry, disgusted that I got up and walked out. My husband followed.

I cried my eyes out from the chair in her office all the way to the car, and to home. I had already figured out that DEAF means USELESS to Finland – a country that portrays itself to the world as a leader in Deafness. I guess this is the equivalent of Australia trying to show itself as a leader in human rights. Both of these things are now completely laughable. A total sham. Until you see the world as Hearing and then are forced to see the world as Deaf (a change that happens overnight), you cannot possibly conceive how significantly different you are treated, all of the rights you lose, how you go from being a valuable member of society to being a waste of space.

To add insult to injury, the assistive devices that I have relied on have been demanded back. They are to be returned IMMEDIATELY to the hospital. So now I go back to being Deaf without any help. Back to being able to only communicating with my husband and nobody else. Back to not knowing if the postman has brought a parcel to the door. Back to not knowing if Poliisi or Fire department are knocking because an emergency has happened. I am back to being truly alone.

I love Finland and I love Australia. Don’t get me wrong. I am an Australian Aboriginal who has witnessed horrors within Australia that the media never dare talk about. I am a Finnish citizen who spent five years learning the hardest language on Earth so that I could comfortably live in the most beautiful country on Earth.

UPDATE: Human Rights groups are now investigating the said Audiologist, and it turns out she is a repeat offender. She treats Deaf as non-people. She did end up removing all of my assistive devices, after which an emergency meeting was held between the hospital, my family and a Deaf social worker. The hospital admitted there were big problems with her and assured me that Deafies do matter in Finland. I am starting to believe that the Audiologist is on borrowed time in her job, which gives me some restored faith in humanity. As a newly Deaf woman, I have support networks in Finland, for which I am so grateful.

I actually said this out loud to myself when I was doing the dishes, right after Finland Deaf Association contacted me and said they will help me. I was so glad I made a noise about what happened.

 

~ Rosie Malezer.

An Open Letter To Steve Powell, The CEO Of SignHealth

Dear Mr Powell, 

We are writing to you as an open letter from The Tree House group on Facebook and blog (https://viewsfromthetreehouse.com/), we are disappointed to find that there is lack of subtitles on videos that SignHealth have produced.

We would like to remind you that The Tree House Group represents some of the 10 million deaf and hard of hearing people in the UK and we promote diversity, which means we welcome people of all backgrounds including all communication techniques they use. No one is inferior or superior to one another as we are all in the same situation.

We want to make a few points regarding your lack of subtitles on your videos

• There are approximately 10 million deaf and hard of hearing people – 1 in 6 people in the United Kingdom whereas there are approximately 17000 BSL dependent users.

• We believe that subtitling the videos will enable SignHealth to reach out more people who may be deaf oral, use signed supported English, hands on signing for deafblind. Reaching out to the deaf/deafened/hard of hearing people will make your cause stronger than ever because you have more people supporting the cause.

• We know for a fact that deaf people with various communication mechanisms do have problems with healthcare,

o Not enough time to familiarise with a doctor

o Inability to lipread doctors with accent

o Wrong assumptions about lipreading and mistaking that we actually understood everything.

o Inability to book communication support in urgent appointments

o Lipspeakers in short supply

o Having to use family, friends for communication support and many more to list.

• We want to be part of and support SignHealth, because of the problems we all have encountered in the NHS, but not having the subtitles in BSL videos makes it exclusive. It makes us feel that we are being discriminated for using other forms of communication not BSL.

• We would like to ask what are SignHealth’s aims? Are you focusing on the deaf people as whole or deaf people who rely on BSL?

We hope SignHealth would consider our request for subtitles on your videos to be taken into consideration, because we strongly believe that you will reach out to more deaf people who require your help. There are softwares that subtitles can be created on videos, as most of us have managed to do it when we make videos for The Treehouse group. If you wish to know more, please contact the admins of Treehouse Group.

We look forward to hearing your response on this issue within 7 days.

Yours Faithfully

The Tree House team;

Sara Jae,

Sebastiaan Eldritch-Böersen,

Andrew Arthur,

Daniel McManus,

Paul Leonard,

Michelle Hedley,

Kimberley Lucas,

Claire Leiper,

Jamie Danjoux

In addition, members of the public.

 

Jamie Danjoux Is Petitioning Sky – To Enable Subtitles

Here is a very important post that was shared to our Facebook group by Stephanie McDermid of Love Subtitles, to try and rally, raising more awareness on the lack of subtitles across media platforms;

“Over the last three months Amazon has gone from offering zero access to people with hearing loss to subtitling 40% of their content, focusing on subtitling their most popular titles. They say that they still aim to subtitle 100% of content and will continue to make progress over the coming months.

Sky subtitles: we believe in better.

Amazon is a fantastic success story, but deaf people are still facing discrimination from many providers.

Despite having over ten million paying subscribers in UK, over 96% of Sky’s on-demand content has absolutely no subtitles (e.g. on catch up TV and box sets). Sky has set no timeframe for improving this.

Deaf teenager Jamie Danjoux has set up a petition asking Sky to offer subtitles for their on-demand service. As a Sky subscriber he feels ripped off – and completely excluded from catching up on his favourite TV shows.”

As quoted from Jamie’s petition;

“My name is Jamie, I’m 16 years old, and I have severe hearing loss in both ears. 

Like you, I enjoy watching the latest must-see TV show. Whether it’s Game of Thrones or this week’s episodes of Eastenders, I want to be part of the conversations that all of my friends are having. However, as a Sky customer, I’m always missing out.

Like most people with hearing loss, I rely on subtitles that show us what’s being said on screen and what other viewers can hear. Without them, it’s just moving pictures to me. There are more than 10million of us in the UK yet, despite being the UK’s biggest television subscription provider, Sky’s On Demand and Sky Go services, as well as their box sets, are completely inaccessible to us, because they have no subtitles.

People with hearing loss want to be able to watch what they want, when they want, how they want – just like everyone else.

I feel angry and upset that my disability doesn’t matter to Sky. It’s unacceptable that they are denying people who have a hearing loss access to the same level of entertainment as hearing people. That’s called discrimination under the Equality Act, which states that people with hearing loss shouldn’t get a poorer service due to their disability.

Worse still, we’re paying more than £250 a year for a service that we can’t fully use. This isn’t fair.

Sky have replied to this petition in the past saying that they are ‘exploring how to address this gap’. This simply isn’t good enough. Customers have been raising this issue since 2011, but it’s still not a priority for Sky. They won’t even state a timeframe for getting this sorted out.

Sky have even told some customers with hearing loss that, because Catch up TV is given ‘free’ to customers, it doesn’t matter that it’s not accessible! I find this insulting to people with hearing loss.

It’s the 21st century and the technology is available to ensure content on Sky’s On Demand services can have subtitles, just like on their ‘traditional’ channels such as Sky News and Sky One.

I simply want the same service as everyone else. Please help me to get Sky to improve their service for people with hearing loss.”

Sign and share Jamie’s petition now, pretty please?

https://www.change.org/p/sky-enable-subtitles-for-ondemand

Thank you, for your support.

Wishing Jamie Danjoux, all the best 🙂

Hearing Hands.

Once upon a time, Muharrem, who has a degree of hearing loss went about his daily routine as usual. Except, he was then pleasantly surprised to see strangers all around him using sign language, which made his day pass by easier.

When he finds out why and how, his reaction is priceless and most likely this heart-warming stunt will make you shed a tear or two, also.

All because a world without barriers is everyone’s dream.

This ad was made by Samsung, Turkey in order to promote their video call centre – for people with hearing problems.

Come In Take A Seat I’m All “Hears” by Wendy Bebb-Sutton

Firstly I should introduce myself, I was born hearing, but following an accident at the age of sixteen, I lost almost all of that hearing. I wear two hearing aids, which, up until the age of forty I kept well hidden under my hair. After a complete lifestyle change at that time I no longer hid my aids, I finally arrived at the stage in my life where it wasn’t a secret, I was deaf, if my aids offended anyone, well that was their problem.

A visit to the theatre in Bristol one evening sparked the interest in sign language. The performance was enjoyed by the hearing in the theatre and the deaf, thanks to the lady stood on the side of the stage, who acted as interpreter . So where did I fit in? The answer was , I didn’t. For the first time in my life I realised that I needed to face my deafness. I struggled to understand conversation even with the use of hearing aids, indeed so many times I would nod, smile or even just say yes, when really I had no inkling of what was being said.

That theatre visit turned my life around, I knew then I wanted to be able to sign. So after attending various different colleges, I am now more than happy to communicate using BSL. I am also lucky that my partner also learned alongside me, thus making our communication now for the bigger part, sign. Well time moves along and I have reached the stage that when I have hospital procedures I use an interpreter, this is not an option but a necessity. I spent too many years relying on my partner listening to doctors or consultants, I now accept my deafness.

The question that I have asked myself recently is……”how comfortable is a deaf person, with an interpreter present at what can be, very personal times?” How many of us deaf folks lip read quite well, at least I do, but NOT with all people, it can be a real struggle. Sometimes, however, it is not always appropriate to have another person present, I for one have no idea of the confidentiality issues involved with an interpreter, indeed have no idea where I would find this information from. This uncertainty of another person at my appointments came to a head a few years ago, when I attended my first visit to a counsellor. This lady is hearing and was made aware of my deafness by my partner. So, from the onset we were both aware of our sensory differences. Well, I was extremely lucky, I find her quite easy to lip read , I don’t think my deafness has been an issue for her, however for me there have been issues that only perhaps the deaf or indeed a someone who needs to talk to a counsellor would understand. As everyone who uses BSL to communicate knows, facial expressions, body language and placement are a must, this involves face to face conversations. Likewise, if lip reading a hearing person you will need to watch the face of the speaker. This was, and is my stumbling block, I think that the majority of people when taking about something they are not comfortable with do NOT want to look at the other person. I must spend at least half my counselling session staring at the most uninteresting walls. This is a double edged sword, I am either embarrassed, ashamed or quite simply unable to look at my counsellor at these times. Which I believe is quite natural for all of us when in an uncomfortable situation, I find this thoroughly frustrating, I DO NOT want to make eye contact. Given that the only way I know what is being said, I MUST look at my counsellor. A difficult situation overall.

What comes to mind for me is the recent changes in the Welsh government laws that introduce accessibility for all. Surely questions need to be asked about the numbers of counsellors who are BSL users, I have tried in my limited capacity to find out the figures; I am given to understand there is a deaf lady counsellor in South Wales, however she works in Bristol, hardly easily accessible. The whole dynamics of mental health support from a patients perspective has dramatically reduced its services and availability in the last few years. Indeed our help through the avenue of counselling is limited to the magical ‘six sessions’ hoping to resolve matters and that’s IF the client has no communication needs.

So, given the fragile structure of the NHS in the counselling and mental health sector, exactly how does a deaf person cope in this situation? Well, for my part, I am incredibly lucky, I have a counsellor who gives me time, is patient, never rushes me, ensures when I can’t lip read certain words or phrases, to say explain using words I can follow. I am incredibly lucky to have someone who has given above and beyond what one would expect; sadly I am in the minority.

So my deaf friends, don’t hesitate to demand your accessibility, it’s your right. The need is there, for more counsellors who use BSL, maybe more deaf in this profession, certainly interpreters at sessions if we are happy with that situation. The name of my counsellor……….. no sorry folks, I won’t share, after all I have my own deaf friendly who ‘hears’ me. Go on, demand your deaf rights, accessibility for all.

~ Wendy Bebb-Sutton.

Wendy Bebb-Sutton