The Six Degrees Of Separation.

six_degrees_of_separation

The six degrees of separation.

I have a sweet recollection to share, of a particular time long ago when a father wished to purchase for his daughter, a bag she so coveted. Mine. Was this you or perhaps, do you know them? If so, please do let us know.

I had jumped onto the train, all ready to meet friends with my roller-blades tucked away in my brand new sporting bag, that I had purchased especially.

As the tube rattled along and made its course, everyone was either reading the newspaper or dozing off encouraged by the monotonous vibrations of the train. I for one usually contemplated to pass the time.

Someone suddenly but gently tapped me on my knee, I was mildly astonished that someone wanted my attention. He explained that his daughter admired my bag and wanted to enquire as to where he could buy her, the exact same bag. I looked besides him to find his daughter being ever so shy. I remember being as shy as she once. Bless.

I seized the opportunity to draw a detailed map for them, alighting from a specific tube station, directions and the name of the shop. Even, where the bag was in the shop… His daughter seemed silently appreciative whilst her father seemed a little daunted, perhaps at the thought of making his way through crowds of people within the busy streets of London, with his daughter in tow.

My instincts told me he had at least, a little bit of experience with deaf people, knowing how to speak and listen in return. Therefore, I asked him, if he knew anyone that happened to be deaf. Much to his surprise at my evaluation, he then confessed his wife was deaf who remained in the United States whilst he was holidaying here, with their daughter.

Not forgetting the desired bag, their stop was the next one coming up. Mine was not for several stops after. He had shown me patience and kindness as a stranger, “What shall I do? I cannot leave them stranded at the mercy of body pushers” I thought…  I decided to listen to my instincts and got off the train with them instead. He seemed to be somewhat surprised yet relieved that I was able to join and guide them through the bustling streets of London, which was heaving with tourists. He was no longer nervous and seemed more at ease; this meant his daughter was relatively more at peace.

Upon arriving at the shop, I showed his daughter through to where there was an identical bag to mine, waiting to be owned, by her. Different shades of gorgeous purple – who could resist? At last, two people were happy, having been looked after, satisfactorily. I explained that I now had to go because I was meeting friends, wisely omitting that I was late. After all, it was my choice.

I bode them well, to take care and to enjoy the rest of their holiday before turning around and leaving them to continue their retail therapy. As soon as they could no longer see me, I ran like the wind to make up for lost time.

My friends at the time was wondering where I was but they could not get annoyed with me once I explained, what I had been up to. Bless their cottons!

Who knows if the ‘six degrees of separation’ reasoning is viable yet my faith and trust in fate will remain. If this somehow reaches you and this has made you smile in reminiscence, being the daughter and/or the father – ‘Twas truly, my pleasure.

🙂

~ SJ (Sara Jae)

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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

Thank You.

The seed which planted the Tree House ten months ago having been nourished over time by its valued and respected members, will be celebrating its first birthday in February. It has truly been a wonderful experience with lots of challenges. The Tree House has covered a wide variety of things ranging from supporting the Love Subtitles campaign, fundraising for Sound Seekers down to the simple goodnights reaching out to people when tinnitus gets too much in the small dark hours.

As now is a very seasonal month, a lot of you will be busy with your own lives, families and friends which mean the admins of the Tree House will be able to get a well-deserved rest, while the Tree House appears to be quiet. But never fret, we hope to bring you a lot more articles and exciting projects in the New Year so please watch this space!

I would like to express my appreciation to each and every one of you for helping to build the strong foundation on which the tree house is built. A huge thank you to the admins and the contributing authors team for voluntarily giving up their precious time to support the Tree House and what they believe in – moderating a platform where people can discuss issues in a civilised manner. It is a result today of what people have made it, above all it is a place where people feel safe to “speak up” without fear of being judged.

Thank you ever so, all of you – for being you and for being part of the journey that has made the Tree House what it is today.

“Let us be grateful to the people who make us happy; they are the charming gardeners who make our souls blossom.”

– Marcel Proust

blossom

~ SJ (Sara Jae)

In Dedication by Anon.

How many friends do you have?  I am not talking about Facebook “friends” now.  I am not talking about the people you kinda know, your acquaintances.  I am talking about actual friends.  If you were going through a difficult time, who could you turn to?  Who could you tell your story to without fear of being judged?  Who would let you cry on their shoulder?  Who could you text or call at say 3am and have a listening ear?  That is just the very question I asked myself at work the other day – and the answer for me personally, the very high figure of four!

 friends

Four people in my life that I could consider a friend.  One of my friends goes back nearly 20 years.  20 years!  I sound old.  (Perhaps I am?)  Two of my other friends go back around 18 years.  We used to work together.  Of one of these friends, my spouse thinks we have an “odd” relationship, and yet we have been there for each other time and time again.  The other guy, we don’t see each other as much as we used to due to him moving out of town but when we see each other, it’s like we haven’t been apart.  It’s is never long before him and me are putting the world to right about various issues!  And my other and last friend, a very odd one this, this person I met by “accident” and not all that long ago.  I wasn’t looking for a friend.  It just … happened.  Organically you might say.  It is odd though because this person knows so much about me in such a short space of time.  We instantly “clicked”.  (Well, from my point of view we did!)   A person although I have known a very short space of time, compared to the others, has always been there for me, time after time, through thick and thin, good times and bad.

This post is just to simply say, “Thank you”.  Thank you to the four.  Life sometimes has been hard, really hard.  In the last year or so, particularly hard and challenging.  There have been times where the brown stuff has one and truly hit the fan, yet these four, at different times, have been alongside me to help me through it.  Times when I really didn’t know what to do or say.  When I didn’t know which way to turn, these guys have been there for me.   Thank you, thank you!  Although I have told my friends this face to face, I want to say it again, publically for all to see, “Thank you”.

I would urge you, if you don’t have someone you can call a friend, find one.  It’s an old saying that gets said time and time again, “A problem shared is a problem halved”, but it is oh so true.  These guys have been there for me, through thick and thin and if I can be of the same nature to any of the people who would consider me a friend, it would be my pleasure!

 

Thank you for being a friend
Traveled down the road and back again
Your heart is true you’re a pal and a confidant. 

(Lyrics to the “Golden Girls” theme TV show)

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.

Credit And Respect Where It Is Due – Please.

How should one feel after numerous times of making suggestions and coming up with ideas only for someone else to make it their own?

This website and group is not for other people to make gains from and it would be nice if respect and credit is paid where it is due – please.

Because next time, we will kick ass. 🙂

So please, pay credit where the content first originated and respect the people who came up with or wrote it.

Thank you.

~ SJ (Sara Jae)

A Show of Gratitude.

“Yesterday is history, tomorrow is a mystery, and today is a gift; that’s why they call it the present.”

– Eleanor Roosevelt.

gift

On this exceptionally memorable date, I would like to extend my annual show of gratitude to the doctors and nurses of Charing Cross Hospital who several years ago gave me the best birthday present one could ever ask for. 

A second chance to cherish life and being able to watch my beautiful children grow up of which I intend to make the most of.

I never ask for much but I would very much appreciate it if you too could show your gratitude to our NHS services, especially the Doctors and Nurses who devote and dedicate so much of their time and passion to ensure we get the best care around the clock – please could you join forces against any NHS closures and get involved?

For if Charing Cross Hospital had closed down then, I would not be around today.

And last but not least, to our beloved Tree House and its dwellers for creating such a unique place without any barriers.

It is what we all make it.

Please accept this dedicated post as a token of my gratitude for being true to yourselves.

Thank YOU, to each and every single one of you, my family and my friends – for putting up with me 😉

Carpe Diem – Everyday x

~ SJ (Sara Jae)