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.

The Deaf Community – An Important Message.

Many years ago, deaf people were not considered to be in a position where they could be a proactive member of society. For at times, families would hide their deaf child away because they felt ashamed simply because they had a child who happened to be deaf or even worse, were not diagnosed as deaf but for want of a better word, dumb. Some of these people were mistreated, abandoned and abused.

Looking around us today, it is a completely different picture. It is not yet perfect but the deaf now have a community which has come a long way and I am using the word “community” and not “culture” because the word “culture” is rather complex and divisive. When one uses the word “culture”, it is in reference to customs, habits, language and many other factors that belong to a particular group of people who are different to others.

Sign language alone should not form the basis for a “deaf culture” because deaf people are born into a culture that already exists – if you are born into the British culture then by default you are British. Bearing in mind, that sign language is derived and based on our mother tongue. Both deaf and hearing people as well as monkeys and apes can use this form of visual language. On the other hand, it would be wrong of us to assume anyone who may be hard of hearing, deafened, deaf or deafblind automatically know sign language. To presume that everyone deaf can sign is not correct and it is misinforming our society of today.

A baby who has been born deaf into a British hearing family, growing up with the family’s customs and ways, can he suddenly deny his family’s culture and refer to himself as deaf only? Insinuating, that because his family is hearing, they do not belong to a “deaf culture” despite having tried their very best to provide their child with an enriching and balanced upbringing, encouraging him to speak, sign and integrate with his peers regardless of whether they were deaf or hearing.

It would be extremely hard for me to separate myself from the people that taught me everything I know and in the process hurting them in return by secluding myself to another particular culture, especially one that we find difficult to define.

To put it simply, we have habits (no, not those long brown gowns!) which is interpreted by some as “deaf culture”, or more appropriately termed as learned behaviour. On the contrary, we can learn it, be aware of it but it does not mean we have to adopt it.

Sadly, there are deaf parents who hope their child will be born deaf because they believe they belong to a deaf culture only and by having a hearing child, they would break that familiarity to what they only know. This is an extreme stance to have and it is one that is potentially damaging.

By simply saying to hearing people “If you do not make the effort to communicate with me then I will separate myself from you all together” is so not the route to take; the more they see of you, the more they are forced to understand you. I say forced because hearing people have the option to learn at least some basic sign language like finger spelling which should at least be made part of today’s school curriculum.

One (i.e. Paddy Ladd and his Deafhood book) could argue that residential schools for the deaf is the main continuity for “deaf culture” being learned – perhaps forty years ago but not today. Because forty years or so ago, the differences in technology, segregation and concentration then and now could not be more evident unless influenced and taught otherwise by the older generations.

As stated on NDCS website, “90% of deaf children are born to hearing parents with little or no experience of deafness or knowledge of how to communicate with a deaf person”. The other 10% would probably grow up with sign language as their first language in cases where the deaf parents also sign rather than having to wait until they have contact with other deaf children, which is normally the experience of the other 90% at school. Approximately, nowadays, 90% of those deaf children born severely or profoundly deaf are likely to be implanted before their second birthday – More than 60% of the children at Mary Hare School now have implants.

Where hearing aids and implants are concerned, people have feared deaf identities and the linguistics will be lost, “I am still deaf” one may remark. Of course, you will still be deaf because your hearing aid(s) or implants will not be in use 24/7 and you will have grown up as a deaf person, lip-reading, signing (if able to). The deaf majority at present, thankfully, now sees a CI as a superior hearing aid, which actually has very little bearing on “deaf culture” despite a tiny percentage that are anti-CI and vehemently trying to turn people against CI’s by using an excuse along the lines of “social cleansing”.

There is a term albeit rarely used, which is the “hearing brain”. I understand this to mean when someone loses hearing later in life after growing up living life to the max as a hearing person possibly could, has been fortunate to receive a cochlear implant, only to characteristically revert to whom they grew up as. Do we or rather, should we put that down to “hearing culture”? When it is whom they have learnt and happen to be, within themselves and society just as we are who we are and that others have taught us who to become.

My fear of seeing people belonging to one culture and denying everything, everyone else around them is that there is a danger of separating ourselves from the mainstream culture we have to live in and share.

In being exclusive, this will undo all the hard work that has been achieved before us, by the many generations of deaf people. They are the ones who struggled and fought hard to finally be accepted within the mainstream society today. If anything, we should continue to strive albeit much harder to keep this sense of inclusion and integration developing but there is a cycle, especially where learnt behaviour is concerned, reoccurring in many senses that people need to break out of this habit, especially if they want to advance further as an inclusive and diverse community.

There is a still a lot that has to be done, in terms of educating society that we are all equals and just as capable but not by creating and realising any further divisive ideas. With positivity, forward thinking and unity, this can be achieved by the deaf community but only if the will is there.

~ SJ (Sara Jae)

Independence.

© The Tree House 2014
© The Tree House 2014

Remaining independent is one of the main reasons why the Tree House (so far) has no sponsors or partners who can influence our balanced views to suit one’s needs or agendas. Every minute and beads of sweat that has been spent in dedication towards the Tree House is purely voluntary – out of generosity and passion. I am sure that I am not alone in truly admiring those for giving and for not receiving because all of the contributed writings, edited videos are of very high standards.

Now and again, there will be moments of holding one’s breath because we strive to provide an impartial and independent platform for those who are or wish to be “open minded, forward thinking, think the unthinkable, and say the unsayable all the while thinking outside the deaf box.”

By facing reality and being realistic of our deaf ways, it does mean that now and again there may be acts of dispelling myths. We all need to keep up with the times, accept, respect current ways of modern thinking whilst being inclusive of today’s diversity. Only then can “we” move on.

However, if a neutral sponsor who is willing to remain impartial, open-minded, keeping in line with the Tree House’s ethos and has the loyal dwellers best interests at heart shows an interest, they will then be considered. As that is one aspect, we would be willing to move forwards with because it is not about us but the society we have to live in and share.

“To thine own self be true” – Shakespeare.

~ SJ (Sara Jae)

One Year On – Something Inside So Strong.

Upon reflection on how The Tree House has been nurtured since the seed of reality was first planted one year ago, how it has grown into a strong foundation and radiates with the warmth of the light from within. It is those who are able to welcome, include and consider diversity – all the various communication needs or abilities regardless, who exhibit a true strength of character.

Combine that strength with a sense of mutual respect for all and genuine intent to effect change for the better. Barriers are slowly but surely being broken down as the way forwards is being paved by those unsung, for simply being true to themselves and others in standing tall with courage.

With each and every one of you, wherever you may be – over the past year, there has been something inside growing ever so strong. Moreover, because of you wanting to be accepted for whom you may be and to have your voice – you are why we continue so. Onwards and upwards – wherever it may take us.

We are truly honoured to have been graced with the pleasure of your company.

Here we humbly share with you our very first anniversary tribute.

Thank YOU!

Can you tell who is hearing, hard of hearing, deaf or deafened in this video? Can you tell who relies solely on sign language to get by? Can you tell who is a CODA? Can you tell who is a lip-reader? Can you tell who tries their best to adapt to present company? No because that is the beauty of being so diverse and inclusive of all. All of which is not obvious in making this video and soundtrack possible.

Unfortunately we could not include all the clips and photos we were provided for this compilation as we sadly could not fit it all in order to show the full extent of the diversity. Thanks ever so, to all of you who contributed and supported us in the making of this video. It is very much appreciated – more than you realise. Please take your hats off to Paul for his time and patience in editing and compiling the videos together which produced the awesome final cut.

The full lyrics to the sound track on our video can be found by clicking on this link: (Something Inside) So Strong by Labi Siffre.

To view Sambuca’s or Danielle William’s (full length) signed song to the soundtrack “Something inside so strong” please click on these links: Sambuca’s signed song or Danielle William’s signed song.

Please feel free to join our rather diverse Facebook discussion group.

To be notified instantly of any new articles by The Tree House, please feel free to follow us on Twitter @treehouseviews, subscribe to our Facebook page and/or add us to your circle on Google + .

Positivity rules!

~ SJ (Sara Jae)

How Would You Like To Be Called?

I had been anticipating my ENT appointment for months now and finally this day had arrived. But, what a day?!

To begin with, I had been a regular patient at my local audiology department but when we last phoned for another appointment – I was notified I had to be referred back to audiology by visiting my GP, to ask to be referred to ENT who would then put me back through to audiology. What a palaver but if I needed new ear moulds and hearing aids then so be it. I persevered.

Going through the broad spectrum of emotions and thoughts, as I decided I needed to be there at least twenty minutes early to claim a prime position, in the waiting room – close enough to scan lip movements for any names being called out. I had clarified with the receptionist if they would be calling out names, she confirmed this and that she would let them know I was hard of hearing. I explained that I was deaf to reinforce just how profound my hearing loss is. “Oh ok, same thing” she replied. I had to remain calm and took my seat albeit feeling rather surprised.

“Mumble Mumble” started off the processing by the nurses and trainee doctors. Feelings of dread were not appeased nor swayed when I noticed this LED display board to one side welcoming patients;

“Welcome to ENT you will be called through to see a member of the ENT team”

IMG_0966

My GP’s surgery has the same sort of contraption except they use it to announce patients’ names on it, for a certain designated room to be seen by Dr X or Y. So relatively I wondered why the ENT and Audiology departments despite being specialists, could not implement the same quality of service to be inclusive of all. Digital technology in this day and age has advanced greatly but not in our NHS hospitals it seems. This needs to change for the better, for their sake and ours. After all, they did ask how patients wanted to be called.

How would you like to be called?
How would you like to be called? On the screen in ENT.

A Tree House dweller informed us that he once had a placard with his name on it whilst waiting for his appointment, much to the other patients’ amusement at the time. Unfortunately that is how appalling services can get and this is what he felt he had resort to in order to be seen.

I was now sensing the other patients in the ENT waiting room were becoming restless, demanding to know when they would be next seen and this poor nurse was trying to appease them. By this time I had managed to pull myself together from feeling quite annoyed at being passed to audiology and then back again to ENT not knowing why or if I would be seen, if at all. If they were getting angry at being delayed by mere minutes, I thought to myself how should I be feeling only to be made to wait potentially a few months extra for my new ear moulds and hearing aids after waiting months already, especially in such an environment?! I decided I was not going to let them feed me any negativity and found some inner peace to remain patient.

Patience is a virtue.
Patience is a virtue.

From not the usual place names were being called out (the doors in the photo above) but further to the side – I just about saw my name, whilst glancing, being clearly spoken. My turn – Glee and amazement at catching that! I had the consultant this time around who was particularly interested in my family’s history of deafness – why they were deaf, how and if my children were “ok”. He then enquired how my hearing aids were. I mentioned I had had them for about ten years now and the last time audiology tried to provide me with a new pair they did not suit me so handed them back hence why I was now eager to try again as my current ones were starting to become slightly temperamental. I am also scared of being left stranded with nothing to hear with. He explained to me that any new pair of hearing aids is most likely not going to suit me based on my audiogram so he is ordering a head scan to find the biological cause of my deafness since my mother was born deaf – cause also unknown and my father became deaf through meningitis. He was especially interested in my mother’s deafness and if she could talk well. “Yes” I replied, “Just like I can”. The consultant then expressed. “I would like to put you down for a cochlear implant if the new hearing aids do not work for you”. Instantly emerged a brand new, never experienced before emotion and it is one I cannot find the words to describe.

As my consultant returned me to the audiology’s waiting room and found me a seat; I thanked him for his time. Suddenly I found myself dismayed, wondering why I was once again back in Audiology! Recurring feelings along the lines of, “Do they know I’m here / am I in their queue?” I scanned once again for any names being called out. Whilst scanning one caller, I had not noticed another came out to call but noticed she had gone into reception to make a query about this piece of paper in her hand. She came back out and said… My name – Glee once again! Phew, that was a close call I determined– I had missed that first time around because I only have one pair of eyes.

Ear moulds casts were made and she too concurred that the new hearing aids might not work very well for me due to the “different new sounds” they would make. But as anticipated I was going to have to wait at least two months more for another appointment to get and try out these new hearing aids. If only they had seen me when we first called as I was already a patient then, I would not have had to wait so many months more. She understood my frustration and said she would try to get something earlier.

A cochlear implant? Me?! I must admit though being an honest person, if I hadn’t written this article regarding cochlear implants I most probably would not have been as open to the idea. One thing I do know at this point in time is that I am not looking forwards to the realisation of being left with less than adequate hearing from prospective replacement hearing aids – my current ones have lasted me for so long and they will not always continue to serve me well. Remaining positive though that the new pair will work just the same or better and if not, perhaps the next steps are meant to be. I would very much prefer to have the same quality of sounds or better – not less. Just as you would expect a replacement PC of the same specifications or upgrade to better specs.

Does this mark the beginning of what could be the next stages in my journey? Only time will tell and more patience once again. Upon reflection, I realised that by asking patients to be referred through all over again it was giving the consultants a chance to catch those that may have filtered through first time around and a chance to produce a more updated yet better care?

Going back to the title of this article, “How would YOU like to be called?” Be the change you wish to see so start that ripple effect by being courageous and letting your GP’s surgeries, Audiology and especially the ENT departments know, just how THEY can be more inclusive and improve their services.

Carpe diem!

~ 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,

Sara.

 

 

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.