At Whose Fecking Mercy, Exactly?

complain button

The other day I was concerned to find quite a passionate post, ranting about being denied the opportunity to watch a captioned screening of a film they particularly and most eagerly wanted to watch. They went as far as to complain to Cineworld because they felt as though they were “at their fecking mercy”. So not my words.

Then I spot an editor adding fuel to the fire by suggesting they write a post about the dispute they were locked in, with Cineworld – for them to publish on their blog. Surely an editor is meant to fact check first? Or are they just desperate for ratings…

These days I do not wish to get involved with anything deaf related because usually, it’s the brutal truth which people know but refuse to accept. They are happy in their dream world, assuming all is against them when the fight to break down barriers are sometimes of their own doing.

This current dispute with Cineworld is unjustified. Because I myself had been following listings not just from “Your Local Cinema” but comparing them with official listings by the cinema companies themselves.

your local cinema logo

Why would I accept a third person’s say so? I’m going to double check it and make sure it’s correct or otherwise. This is how I knew Cineworld was not wrong and so felt the need to inform the complainer, of my findings. That actually, ‘Your Local Cinema’ was in fact publishing incorrect listings on occasion and even listed non-existent cinemas. Some of which had long been demolished. I had been checking throughout the holidays as there were and are films we, that my kids and I, would like to see and saw for myself, the inconsistencies.

Double check, the information and yourselves. Try not to be so trigger happy, eh?

~ SJ (Sara Jae)

The Right To Decide by Catherine Vest

A vlog about one’s very personal experiences was shared publically, this relatively hit home.

Vlog: https://www.facebook.com/cmcastil/posts/10102003581703274?__mref=message

Transcription:

“This is in regards to ‪#‎whyisign‬— I am one of those unfortunate individuals who was forced to learn ASL purely for survival. I was not linguistically deprived and was happy with my current method, which was Signed Exact English (SEE), until I was placed in a deaf school. The transition at the deaf school was brutal and I was bullied horribly because I signed differently. It is akin to bullying someone else who spoke differently, like talking with a stutter, lisp or some kind of speech impediment.

While many of you consider that it is a human right to have access to our language, I doubt many of you did stop to consider the possibility that bullying or tormenting someone else who happen to have different signing skills— that you may have denied our right to decide whether SEE or ASL would be best suited to our needs.

You took away my right to decide if I wanted to learn ASL and took away something that I grew up with and served me very well in many areas of my life.

You do not get to decide how my signing should look like- just like with our unique ways of communicating. This is how my sign looks like and you do not get to tell me that it sucks or that it does not fit in your ideal vision of how sign language should look like.”

Meanwhile… I would like to applaud Catherine Vest, for her courage in speaking out – in many senses.

~ SJ (Sara Jae)

Pitched Perfectly? If Only

Pitch Perfect was broadcasted on TV earlier this summer, it was only then my daughter and I discovered what an awesome film it was to watch. We enjoyed it tremendously and the subtitles were marvellous, I could follow every single word, the dialogue as well as the songs. I felt on a par to everyone else.

Recently I treated myself to a Pitch perfect DVD – I had debated with myself which DVD to buy, as the ‘sing-along’ version was available too. I could not make up my mind since I knew from experience that subtitles on DVDs were not as inclusive as on TV so my sister helped me to choose. We concluded the singalong version should allow me to watch the film’s dialogue as well as following the lyrics to the musicals however; this option of being able to toggle was not to be the case…

My daughter at present is home unwell from school due to a virus so I thought that by putting on the Pitch perfect DVD it would also cheer her up. I had very much been looking forwards to watching it once more in my own leisurely time. However, I have had to leave her side to let her watch and enjoy the rest of the movie since I could not follow/enjoy it.

The DVD menu gives you two options. First option is the “Play Movie” of which allows you to watch the movie without the karaoke style captions to the songs but upon selecting English subtitles for those like myself who happen to be hearing impaired, the subtitles omit the song lyrics. The second option “Play Movie with Sing-along” version only allows you to watch the movie with the karaoke style captions to the songs yet despite selecting English subtitles they do not show up at all for the dialogue remainder of the film. Examples of which are shown in the video below.

Why can’t people like myself who happen to be hearing impaired, watch a musical DVD (in general) at our own leisure with the subtitles reflecting the whole context of the movie? The dialogue and the lyrics…. Only then, it can and will be ‘pitched perfectly’…

Thank you, for your time and patience.

Nevertheless, my daughter thoroughly enjoyed the DVD…

~ SJ (Sara Jae)

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)

Ten Reasons Why We Would Like Change.

We are all too aware that changes need to be made and asks ‘What would you like to see be changed?’

(SJ says, “I would like” because her grandmother always said, “I want – never gets”!)

Here is a list of some of the changes the Tree House dwellers long for;

I would like to see the deaf community put their differences aside and work together to improve access. I wish they would realise no one is superior or inferior to another.

I would like to see a bridge built between people of every walk of life (deaf and hearing for example) working together to establish common ground and to work out ways to bridge gaps that exist between the two camps.

I would like to see the deaf community unite regardless of different communication abilities to work towards the same aims because that would make inroads more.

I would like to see a day when being deaf does not feel like being punished for something you did not do!

I would like peace because I am a troubled person.

I would like people to stop having one rule for themselves and another for others because that is just selfish and unfair.

I would like change to happen from the top down so everyone is equal regardless of whether they are deaf, HoH, deafblind, blind, hearing or different in any other way.

I would like to see respect and tolerance between all human beings across the planet, and the gap between rich and poor hugely reduced.

I would like people to realise just how diverse the deaf community is and that not everyone is reliant on the same assumed method(s) of communication.

I would like to see the deaf community and the hearing world to look at the full picture instead of looking at one spot constantly and focus on the diversity cos we all are diverse and lastly unique…

Compiled by SJ (Sara Jae)

Stop The Online Abuse.

Being in the public eye for the past two years has subjected me to many forms of online abuse be it indirectly or directly. I have witnessed the “mob mentality” escalate appallingly fast when someone may have a different school of thought, or by simply being different. Take the time for example when I was attacked for choosing to speak instead of sign in my BBC interview. I naturally speak when I am with hearing people as I am more comfortable doing so yet my choice to speak was not respected by those who demanded that I signed just because I come from a deaf family. I was put between a rock and a hard place and I was damned if I did sign and damned if I didn’t. The sheer number of sheep flocking was astonishing – thank God I am not a sheep! These days, too many people take advantage of peer pressure to manipulate and dictate others what to do.

“Hate, it has caused a lot of problems in the world, but has not solved one yet.” – Maya Angelou.

There will always be someone who can put forwards different perspectives on issues and situations due to their experiences in life and knowledge, making the impact for change greater – surely everyone deserves to be respected with kindness just as much as the next person regardless? It is extremely healthy to have variations of viewpoints so one can be educated and decide – especially for themselves.

When having a different opinion one tends to be singled out as a “Troll” yet to single that person out as a troll must be another form of abuse in itself.

The World Wide Web.
The World Wide Web.

However I have recently experienced a new form of online abuse and I have been left saddened by it. This experience has made me want to retreat, have nothing at all to do with the world-wide web to distance myself from all the negativity and to restrain myself from reacting. Life is far too short.

To go onto social media and post potentially libellous material which names a person, persons and so on when they cannot defend themselves surely must be another form of online abuse? Especially when there is no evidence that the named party has attacked or done anything wrong yet people feel the urge to personally attack the named party? And what’s worse, people adopting the “mob mentality” by joining in and adding fuel to the fire. No one is born with hatred – it is instilled and mimicked. If only respect worked in the same sense.

Seeing that occur from a distance opened my eyes and I soon realised I had been in the very same position numerous times now. Unfortunately I know I am not alone in this experience for a friend of mine was personally attacked recently by someone posting a video onto social media publicly naming him and criticising him. If only he had sorted his dispute out privately with the named person – he would not be now known as a bully within our circle of mutual friends.

I will not tolerate or condone any form of online abuse around me especially bullying. I made it clear that I would not stand for this within the Tree House in the form of personal attacks (or when we are named outside the safety perimeters of the Tree House which subsequently is inviting us to take action) or be associated with those seen to be contributing to the very public online form of abuse. Yet making it clear, I was inevitably set upon. My position as founder in trying to protect the Tree House from any potential damage was questioned, undermined. oppressed and criticised. Being unbiased and diplomatic sets myself apart from others and this helps me to look outside the box – as always I will do as I deem just, adapting to each situation based on my experience. Was my being criticised and slated another form of online abuse? Maybe not in their eyes but it certainly felt like it to me.

To have thick skin is very important and deaf people are extremely vulnerable to the various forms of abuse, be it online, within society, at school, at work and unfortunately at home. In all walks of life, there will always be that someone who will try to drag others down no matter who they may be, for being different. My scars have healed over many times now hence why my skin has grown thicker and if I can refuse to be manipulated, so can you. Positivity rules!

Do not encourage any form of online abuse because these emotions which are associated with being bullied will exhibit themselves within the victim(s).

◾Depression

◾Shame

◾Low self-esteem

◾Sadness

◾Difficulty trusting others

◾Anger

◾Anxiety

◾Frustration

◾Fear

The offenders’ hatred should not dictate your time and you would only be lowering yourself to their level if you join in or encourage it. Rise above it because people who show their true colours in this manner deserve to be reported to the police so keep a record of all the evidence and present it in order to take action. I have done this in the past being a victim and they have listened – they issued warnings to the offending parties. With actions comes consequences – if they can dish it out, they can certainly take it.

Please, don’t have one rule for yourself and another for others – put yourself in the victim’s shoes and walk hundreds of miles in it first, taking a look in the mirror before passing any judgement or criticism.

“Darkness cannot drive out darkness: only light can do that. Hate cannot drive out hate: only love can do that.” – Martin Luther King Jnr.

It is about time online abuse in its various forms is stopped. Help by being a part of that change in stopping personal attacks, cyber bullying and all forms of online harassment. Fight back – especially for justice.

Thank you, for your time and patience.

~ SJ (Sara Jae)

Some useful links for your reference:

Internet Safety

Bully Online

Crown Prosecution Service

Taking action about Harassment.

Harassment Act 1997

and last but not least,

I would like to applaud Dr Taylor.

Update: Defamatory gossip is now being spread about The Tree House and myself which is once again another form of abuse – Please keep evidence of this as we have built up a case which we have taken action on with positive results.

I Long To Be….

There are barriers that our deafness prevents us from fulfilling certain aspects of life so I set dwellers a task to finish this sentence according to our own interpretations and dreams for in dreams are seeds planted of reality.

“I long to be….”

For in dreams are seeds planted of reality.
“For in dreams are seeds planted of reality.”

 I long to be free as a bird.

I long to be confident.

I long to be loved for being me.

I long to have stress free conversations, access to services where everyone is aware of our needs.

I long to be a performer on the stage where I warm people’s hearts and put a smile on their faces for days weeks and even years later.

I long to be able to give my daughter the best possible future without having to constantly chase education and medical professionals.

I long to work for education authorities who understand that a deaf child is not going to “get better” next year, and yes, they will need continued support.

I long to be someone who can make a difference and inspire others too.

I long to be given more access to services without having to constantly struggle with basic things like shopping, ordering food in a restaurant, or travelling.

I long to work somewhere I feel I belong, where I don’t feel socially isolated, and where colleagues are deaf aware, or willing to learn deaf awareness.

I long for access but the crafty part of me would like to continue crafty conversations where not everyone understands!

I long to be understood.

I long for a world where web live chat is a common alternative to phone calls!

I long for the day when hearing people no longer frown at me and say ‘I telephoned “Joe Bloggs” [whose deaf] yesterday but they didn’t answer the phone??!’

I long to see the technology we REALLY need to communicate (as deaf people) SPEED UP …and coming up to speed!

I long to see society take responsibility for excluding us in developments, new services, buildings etc.

I long for people to understand that Hearing Aids are great, but do not “solve” my “problem”.

I long to know if I’m meant to feel complimented or insulted when people say to me ”you’re deaf, really? Wow don’t you do well’

I long for hearing people to simply accept us as one of them.

I long to see an approved national independent governing body for all deaf issues.

I long to see people no longer dictating and undermining others.

I long to be a classroom teacher still, a job I have done for 30 years.

I long to be understood by the hearing community (of which I am part) and not have them say when I say I work with deaf people stupid things like ‘oh, you must know Braille’.

I long to read people’s minds… so I don’t have to make attempts at listening to them.

I long to be awarded a life-long exemption certificate from the hassles of having to prove I have not miraculously become hearing due to the inefficiency of the government and their services.

I long to be able to sing along with everyone else as I can hear the words of a song or even just be able to know what the song is and who the artist is.

I long for people to stop hanging up on type talk calls!!

I long to be taken seriously by all. Too often are my views brushed aside or disregarded simply because I won’t always be as confident in voicing my views as a deaf person in a mass of hearing people, and also some disregard because I am still young.

I long for labels to be dropped – at the end of the day we are all human, we all live on one planet and we all have the right to be ourselves – throw the labels away.

I long to able to occasionally be able to take back everything I’ve said, when I’ve answered a question only to find out I misheard and nothing I said makes sense in the conversation.

I long to be able to go about living my life the way I want to without having to adapt to what society insists we do!

I long to be always a Spring Chicken.

I long to open up narrow minded people to the wonderful and diverse world we are a part of as it is they who create barriers and divisions!

I long to see access rights for all the various communication needs and abilities.

I long to be accepted for the intelligent person I am.

I long to be considered as an equal and included as an equal based on justice.

I long to be listened to…..

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,

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.