‘Dear Hearing People’ by Sarah Snow & Jules Dameron

Here is an impressive video made by Sarah Snow of Glide and Jules Dameron.

“The Deaf community tells all hearing people what’s truly on their minds— and it’s a big deal.”

You can also read about why, Sarah made this video.

http://www.glide.me/dear-hearing-people

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A Pleasure To Meet You.

I was encouraged by my best friend to share a video, that my daughter managed to sneak off me. (The little minx!)

I had previously been too fearful to share it because in it I speak. (I say “Is it recording?”) The last time I spoke in a video which was for the BBC, the fall out was unfortunately, predictable.

Too many people presume (albeit dangerously) and try to dictate our choices rather than respecting them.

By the way, I have signed ever since I could, because I have deaf parents – I believe in total communication.

So, come on over to The Tree House and meet me / us, cyber wise. Do feel free to share your videos too.

Positivity rules! 🙂

~ SJ (Sara Jae)

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 🙂

Raymond Antrobus: “The First Time I Wore Hearing Aids” (spoken word with captions)

Many thanks to the member who shared this video to our group that I just had to share with everyone else, here is a thrilling video for you to enjoy about how someone felt the first time he wore hearing aids and what the sounds meant to him. Enjoy!

PS hubba hubba!

~ SJ (Sara Jae)

The Deaf.

I happened to be in the vicinity of the National Portrait Gallery when I was notified that Grayson Perry had done a piece on the deaf community as part of his “Identity” series. This intrigued my friends and I so we seized the opportunity to view his art work – some of which resonated with us, especially the “Memory Jar” and “A Map of Days” which was rather unique.

The episode which portrayed Grayson Perry’s time and artwork as a result from having spent with selected members of the deaf community was being broadcasted the very same day, amongst his other research with other aspects of “Identity”. Once I saw the artwork that reflected the deaf community on display in the National Portrait Gallery, I just knew there would be a repeat of certain schools of thought, of which some will say is justified for their own reasons. I decided not to watch the said episode for my own personal reasons which was respected.

The Deaf.

The Deaf.

grayson perry 2

However, I suggested another piece of Grayson Perry’s artwork to my husband as I thought he would be interested in that aspect of Identity and he took it upon himself to watch the episode that featured Grayson’s research and the artwork. It happened to be shown in the same episode as “The Deaf”.

Subsequently we had a chat and I felt compelled to relay his thoughts to the rest of the Tree House dwellers for another angle on it all coming from a hearing person’s perspective.

My husband (who studied at St Martins Art College) says…

“As an artist it is not Grayson’s fault that he could not portray deafness very well because he is not deaf himself therefore could not grasp the true concept which is why his poster came out rather boring as deafness and sign language is very visual”.

On the other hand, my husband also felt “certain people who were chosen, were very selective in who they “grouped” with.” 

My husband then reminded me which I completely forgot about, how he did an identity project for his Masters as he is an “alien” in this country – One aspect of his project, he made a video of me signing and this video went up for debate amongst the students who were left feeling frustrated at not being able to understand and they dictated that he could not use this video because he was not deaf. He shut them up by saying it was part of identity and who he is, being an alien in this country – reversing the frustration back at them, at not being able to understand and/or follow a language.

It takes a lot for my husband not to like anything and what he perceived being presented via the deaf people in the episode was nothing new – to him.

I can only wish Grayson Perry had the opportunity to be exposed to a wider spectrum of the richer diversity within the deaf community so he could truly understand the issues that comes with deafness and our various communication abilities, skills and needs. There is no deaf culture or D/d per se – is there a hearing culture, H/h? Is there a blind culture, B/b? Let us not create any more division when there is no need or justification for it.

On that note, we would like to invite Grayson Perry and anyone else who may be interested in the deaf community to visit us at the Tree House, who would also be more than welcome to come along to any of our events in order to meet us for a truer insight into just who we are, a community that respects each and every one’s needs and their/our choices of communication methods which results in TOTAL communication. A community that respects each and every one for who they are and wish to be. A community that is inclusive of all.

But not one that would even dream of wishing a child would be born deaf.

Thank you for your time and patience.

~ SJ (Sara Jae)

Latest Hurdle in Renewing Freedom Pass.

In the post I received a letter from my local concessionary travel team which left me feeling stunned and concerned for other people who also happens to be deaf, living in my local borough. I knew not all would be claiming Disability Living Allowance (DLA) or be in receipt of the Higher Rate  Mobility Component.

Me being me, I set out to challenge the Local Authority over concerns they raised within me in said letter by sending them an email which I can only hope I made it clear enough that one could not send out a letter like this without giving those who are eligible any other alternatives to provide proof they are entitled as not everyone claims DLA or gets the higher rate. If people / councils are going to manipulate residents into feeling worry and despair then surely I am going to pull them up on that!!

“Dear Sir / Madam,

Thank you very much for your letter advising me to renew my freedom travel pass. There are issues within the letter which concerns me because not every deaf person gets the Higher Rate Mobility Component of the Disability Living Allowance – surely our deafness which is covered by the eligibility rules should be enough?

I recall in the past Hounslow Borough requesting our audiograms of which I am sure many were obliged to produce however being told I was not deaf on my audiogram was a farce and I had to defend myself by correcting them that if they were going to ask for audiograms as proof of our deafness they should be employing an audiologist who is qualified to read audiograms and then able to determine who is deaf enough or not. I have been profoundly deaf since birth and this felt like an insult to me. I was then allowed to renew my travel pass but it was not without any ill feelings.

The subsequent new Freedom Pass renewal system went very smoothly and was a pleasure however this time around; I am left stunned at the lack of knowledge in the differences between disabilities and our needs. You are requesting proof of mobility of which some may not choose to claim or do not have the higher rate of. I understand that this rate gets automatic renewal but it is very unfair to ask this of those who are eligible already by being deaf – covered by the rules for the Freedom Pass by the Transport of London and the “Guidance to Local Authorities on assessing eligibility of disabled people in England.” I attach photos of the categories and some points from the Guidance for your information.

rules

Guidance to Local Authority PDF.

Freedom Pass website.

22 For applicants outside the above categories, the Department recommends that  the next most robust means of assessment is likely to be via local authority lists of  registered disabled people where these are relevant. This is covered in more detail below  for people who are blind or partially sighted, or profoundly or severely deaf. Where a  person is registered with an authority outside their current area of residence, the local  authority may wish to consider the desirability of contacting that authority as against other  means of assessing eligibility.

39 There is no statutory registration system for deaf people. However, many will be registered on a voluntary basis with their local authority social services department. The register is open to people who have varying degrees of hearing loss, so in checking the register a local authority is advised to check that the applicant is profoundly or severely deaf before issuing a national concession bus pass.

Please could you now explain to me, why we are being expected to provide proof of our income/benefit when it has nothing to do with our eligibility for a freedom pass when we are already eligible and entitled to one due to our deafness? It is becoming even more apparent to me just how much knowledge staff has in terms of the differences in disabilities and the various needs / abilities of each resident in the borough. One cannot send a template letter to all those categorized, claiming DLA when they may have other disabilities that decrees them eligible otherwise.

My records should show evidence of the audiograms I provided you with in the past and I would have thought this was more than enough proof of our disability which we happen to have. To see other people like myself be put through this ordeal is very unfair on them and because of this, I will be taking this up with certain charities that advocates for the deaf and hard of hearing, local mobility and disability teams as well as Transport for London as it also concerns them it being their concessionary passes of which we fulfil their criteria that one could mistake you for overlooking.

I would be more than willing to come in for an assessment but only if you are able to reassure me there is a qualified audiologist present – who can sign. Or as the guidelines suggest, you could contact my local audiology department for the necessary proof.

29 Where, as a last resort, it is necessary to use a GP, the contact should be made  direct by the authority, having secured the applicant’s agreement, and the GP should only be asked for answers to factual questions. They should not be asked for an opinion on whether someone meets the criteria.

I have asked for another copy of my awards letter as requested which should not be any of the concessionary team’s business so will also be taking this up with my local MP and councillor as our deafness and audiograms in the past should be more than enough evidence to allow us to continue being in receipt of Freedom Passes. The rules and eligibility guidelines is there in black and white which works out for the best all round to protect everyone in their best interests.

I look forwards to “hearing” (pardon the pun!) from you.

Regards,

Sara Jae.”

 

(Full name not disclosed on here for privacy reasons)

 

Updated on 12/11/2014

My second email:

Dear Sir / Madam,

Last week I emailed the below (forwarded) message to some of the recipients named above and received no response except from Hounslow’s Advocacy team. I am appalled at the inefficiency of the customer service given by the civil service because they are paid to do their jobs, not to ignore residents and to actually know the guidelines for Travel Passes without being told them from eligible users.

I had to phone the concessionary Travel team the other day who instructed me to obtain a letter from my GP when it is clear in the Guidelines that this should only be done as a last resort and if this info is required, the authority concerned are the ones who are supposed to contact the GP’s. My GP is currently writing up her letter to confirm my deafness however we should not be required to provide new evidence every x number of years in case we miraculously become hearing because this is a life long disability. I understand this is one way to weed out the fraudsters but this is very troublesome for those who are genuine and those who do not need to be exposed to template letters regarding mobility and rates of the DLA because it’s not applicable to them when they are eligible otherwise.

29 Where, as a last resort, it is necessary to use a GP, the contact should be made

direct by the authority, having secured the applicant’s agreement, and the GP should only

be asked for answers to factual questions. They should not be asked for an opinion on

whether someone meets the criteria.

I will email my GP’s letter to the concessionary travel team once I receive it for their records and I trust this will be good enough as reassured by the admin staff who answered my call which was relayed via my husband. But what about everyone else who has had to endure signs of ignorance from those who instructed their office workers to carry out such an inefficient job yet this is not their fault when they are only being told what to do?

One of my friends who does not claim DLA and is deaf, received the exact same letter as I did asking for proof of the higher rate of mobility – this confirmed to us this was a template letter being sent out to everyone concerned. Hence showing the extent of knowledge regarding our various communication needs and abilities from those not in the know when they should be – after all, its their job which they are being paid to do? Being in the know would make life so much easier all around – nothing about us, without us.

Please, could someone this time take a moment to respond and reassure me they are looking into the inefficiency of it all as it affects both ourselves and yourselves.

Thank you ever so, for your time and patience,

~ SJ (Sara Jae)

 

 

Updated 13/11/2014

A response from one of my councillors:

“I am sorry that you got so little response to your letter, but many Councillors will have thought that they have little chance of affecting the outcome, and cannot see what they can usefully do. We do not have any contact with the staff who make these decisions, and no input into how they devise their procedures. If I could see a way of making them simplify what require of you I would do it, but I am sure that any intervention from me would be ignored.

You make very good points about the bureaucracy surrounding disability making it so much worse. I have a family member whose struggles to get the flu jab would almost fill a book. No one wanted to take responsibility for letting him have an egg based injection although he has had them for years without any reaction. I do bear such things in mind when we make changes to services at LBH, and try to ensure that common sense prevails.

I hope Hounslow’s Advocacy team are able to help you to move things forward, and I am sorry that I cannot do anything to assist.

Regards,”

 

to which I replied with;

“Dear Sir / Madam,
Thank you very much to Councillor XXXX XXXXX for responding – it was nice that someone finally took the time to do so however it left me feeling quite stranded because I thought that was what Councillors were for? I was advised that they CAN affect the outcome. The guidelines for the councils are quite clear as you have been elected to represent us and do our bidding – in my case, the councillors on the Chiswick Riverside / Turnham Green ward. The council staff work for the councillors, of whom are obliged to follow the laid down guidelines.
You should be contacting the councillor with the disability portfolio and subsequently go to the staff if the rules / guidelines are not being obeyed or fulfilled which is very obvious in this instance with the issues I have presented to you.
It is already hard enough for deaf people to reach the correct contacts because we cannot scream down the phone demanding to be put through to those in a higher position – it’s a much slower, longer, and more stressful process trying to find the right people to speak to. Yet most will not take the time to respond to an email and brush it under the rug. As I have experienced bar two people so far.
Please do not make us feel like we are not your responsibility and that we should find someone else to complain to – we need to be listened to by you because we are feeling the side effects of the inefficiency within the council’s structure, that you work for. It is crystal clear no one knows the guidelines, or has the knowledge regarding different disabilities and needs to carry out a more successful system for it to work with minimal stress and imposition on others.
All those who happen to be disabled/ deaf/ without speech/ blind and other eligible statuses should not have to feel aggrieved by the “bureaucracy surrounding disability making it so much worse.” We should not have to provide new evidence every x years in case someone has grown legs or become hearing again. when the exhausted avenues of evidence we have provided in the past should be more than satisfactory. We have a lifelong disability that people know nothing about and it is those people who dictate our lives according to their limited knowledge of our disabilities and various needs.
I find it extremely hard to explain how frustrated I am at the barriers I am encountering and seeing my family and friends experiencing the very same barriers. I am not doing this for myself but for all the residents in this borough who have fallen victim to a system which is extremely flawed especially for those who have been eligible from day one.
When there is a will, there is a way – please, help your residents who happen to be disabled to have a fairer experience which is justified based on our various disabilities and needs? One cannot send out a template letter (just because it is easier to do so) without giving those who are eligible any other alternatives to provide proof they are entitled as not everyone claims DLA or gets the higher rate for mobility as this is not applicable to all.
Regards,
Sara.”

To be concluded….

 

Update: I had heard nothing at all since my last email to the Team which enclosed a copy of my audiogram and a letter confirming my deafness and the level it was at (and always had been! and always will be!) so I relatively soon after paid a visit to my local Town Hall where the receptionist made a call to the Concessionary Travel team on my behalf. She finally had some good news for me – my Travel Pass would be renewed and will arrive in the post early in the new year, 2015.

We will always have to fight for our rights, even though we are entitled.

Fun, Fundraising and Fire at the Tree House BBQ

soundseekers

Poster by Mark Bushell.

We recently held a Summer BBQ party for Tree House members and friends at SJ’s request since this was her aspiration. We thought it would be fun to eat lovely barbecued food and homemade cakes with great company, whilst raising funds for the charity Sound Seekers. This is a small UK-based charity, which helps deaf and hard of hearing children in Africa by providing hearing aids, audiology services and deaf education, all things we take for granted here in the UK.

Tree House BBQ_header

We had all been looking forward to this for a long time and the Tree House events team had been preparing for it for several weeks. Promotional flyers had been made, tickets sold, food bought and prepared and raffle prizes donated by local shops and cafés.

We would like to give special thanks to our local butcher ‘Quality and Excellence’ in Theydon Bois for providing the meat, to the ‘Green Owl Café’ in Buckhurst Hill, ‘Chigwell Health Foods’ and my mum for donating raffle prizes, as well as to the many Tree House members who prepared food, baked homemade cakes and gave up their valuable time to help out on the day.

In order to make this event accessible to all the deaf and hard of hearing people there, we are also very grateful to Carol, the professional lipspeaker, who voluntarily gave up her own Saturday to be with us and provide lipspeaking and BSL interpreter support to assist the communication and interpret the talks for us. On behalf of the Tree House, we would like to thank Lesley Pizzey Weatherson-Emm from Lipspeaker UK for organising this.

TH BBQ blog_Carol

Thankfully, that afternoon the sun came out and the rain held off. We all sat in the garden and enjoyed ourselves, chatting away and meeting new friends. It was great that there didn’t seem to be any communication barriers despite the fact that as a group we ranged from hearing people to hard of hearing and deaf people with various communication methods.

I (Richard) was kept busy barbecuing the food, ably assisted by Mark Bushell and others. It was a great team effort with several Tree House members all helping out serving the food and drinks.

TH BBQ_Richard Mark

After we had eaten we all gathered round to hear Emily Bell from Sound Seekers talk about the work they do in Africa to help and support deaf children there. Carol provided excellent lipspeaking and BSL interpreting to Emily’s talk to make it accessible to everyone. It was very interactive and interesting, as Emily kept involving us by asking us lots of questions. She explained that through lack of educational and therefore employment opportunities, combined with a lack of audiological support, deaf and hard of hearing people in poor countries were likely to be some of the poorest and most disadvantaged in society.

She gave us examples of the work that Sound Seekers do to try and improve the lives of deaf and hard of hearing people in the African countries where they work. They partner with hospitals to develop audiology services. They do this by training existing nurses to provide basic audiology services, as well as organising volunteer audiologists (often from the UK) to visit them to provide them with refresher training and teach them new skills.

TH blog_audiologist 2

They also partner with schools for the deaf to improve their capacity through specialised teacher training and sign language training, as well as upgrading their facilities. She also talked about a project they are running in Sierra Leone to provide targeted screening of under-18s, who have increased risk of hearing loss. This provides them with the appropriate audiological and educational support that they need.

I was really surprised to learn that people in the countries where Sound Seekers work are much more likely to be deaf than in the UK because of hearing damage caused by preventable diseases, ear infections and medicines causing hearing loss, which often go undetected for years, often until it is too late to treat them. She said that the World Health Organisation estimates that up to 50% of hearing loss cases could be prevented, and many of them very early on, if young children were screened at an early age. This is why Sound Seekers are working with teachers and community health workers, (including a new project in Zambia) to deliver key messages about ear and health care in their local community.

TH blog_Emily in Africa

She also described a project they have in Gambia & Sierra Leone where they are working with mainstream schools to train teachers on deaf awareness and what they should do if they suspect a child in their class of having hearing loss. Often children with a moderate hearing loss are left behind in the enormous mainstream classes, with many dropping out altogether. This project is designed to keep those children in school.

TH blog_Soundseeker school

Emily’s talk left a great impression on all of us, as we realised how lucky we are in the UK to have access to free hearing aids, cochlear implants, audiology, education and hearing screening through the NHS and our local authorities. This makes a massive difference to people’s educational achievements, career ambitions and general quality of life.

After the talk I thanked everyone for coming, donating or volunteering on the day, which was followed by our raffle and cake sale to raise more money for Sound Seekers. Lizzie, Sarah and Jeanie did a fantastic job selling their cakes and serving tea and coffee. They had decorated their cake table beautifully too, making such an effort. Mary Berry would be very proud of them!

TH blog_Lizzie Sara Jeanie

In the evening, several of us stayed there until late, having great fun playing the African drums provided by Mark from Incloodu. We all had such a good time banging on those drums and enjoying ourselves by the warmth of a big open fire blazing away.  It was wonderful to take part and watch others having a go. Michael Theobald’s unique style of drumming was legendary and he made us all laugh, as you can see in the You Tube video here (which was made by Sara Jae).

This is the first time that the Tree House has held a fundraising event like this, and we’re all really pleased that it has been such a success. We also managed to raise about £700 for Sound Seekers, which is fantastic! Thank you to everyone for getting involved in such a passionate way and to Emily from Sound Seekers for coming along and giving such a great talk about such a wonderful charity.

The next day I was really moved by the words of Sara Jae from the Tree House about it, which I now want to share with you all:

“It was such an honour to be present and realise just how much of an effect Sound Seekers is creating in Africa, for the better. But on this occasion, it was with our help via the Tree House and its members seizing the day to donate and sacrifice some valuable personal time for the cause. Yet for those who could not come, they were there in spirit”.

TH BBQ header_fire

We’re looking forward to many more ‘Tree House’ events in the future, whether they are for fundraising, fun or both. To quote Sara and the Tree House motto ‘Carpe Diem!

by Richard and Joanna Turner

To find out more information about Sound Seekers and to make a donation, please click here:

http://www.sound-seekers.org.uk

The Tree House would like to thank Mrs J.E.Turner, Mrs C.Holland, Mr Ian Hore, Joanna Gretton, Eloise Garland, Lauren Harris and Steve Bell for their kind donations and raffle prizes. Also, we would like to thank the following very kind local businesses for their generous raffle prize donations and support for this event, as well as Chigwell Health Foods. Last, but certainly not least, we thank Mark Bushell from Incloodu for bringing his African drums:

http://www.qualityandexcellence.co.uk

http://www.greenowlcafe.co.uk/Home/

http://www.incloodu.co.uk

 

Update: A note from the founder and owner of ‘The Tree House’ – some of the people featured on this entry are no longer associated with The Tree House for several reasons. Thank you for your time and patience.