Pixel.

A beloved friend unusually wanted my attention and it turned out to be for this very impressive video which is titled “Pixel”.

As quoted from their page, “Pixel is a dance show for 11 dancers in a virtual and living visual environment. A work on illusion combining energy and poetry, fiction and technical achievement, hip hop and circus. A show at the crossroads of arts and at the crossroads of Adrien M / Claire B’s and Mourad Merzouki’s universes.”

An exceptional visual experience with elements of surprise! Naturally, we just had to share it with you too because we enjoyed it so.

Source of Video.

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.

Will My Child Be Okay?

As any mother would naturally anticipate and share the same relative concerns of “Will my child be okay?” Yet when it comes to that precise moment upon finding out a child may have a form of a challenging disability, we all take a moment to reflect on it.

One rather anxious mother’s question of the like was asked of Coordown when it was confirmed after agreeing to undergo tests for Down’s Syndrome; her unborn baby would have this genetic condition.

Here is an extremely heart-warming video response they (15 people from around the World) made for her which I am sure gave her goose pimples as it did me and I shall take my hat off to Coordown Group for one of the most reassuring letters.

Enjoy…

~ SJ (Sara Jae)

Disabled Parking.

Some of the troubles the deaf-blind have to face – that even we are not aware of just as much, ourselves.

Parking like this is a hindrance, endangers and disables pedestrians using their guide dogs from safely walking on by.

She says whom I quote:

“I have asked my husband to film this for awareness to show how blocking pavement affecting us and evidence. The great way to raise awareness about parking on pavement blocking us, it’s forcing us to get on the road. In the fact, I’m deafblind I’m never able to know if another car is about to come, my guide dog refused to go through the gap because it’s too narrow, it’s very unsafe for visual impaired people with guide dogs, and other people with any assistant dogs, prams, wheelchair. Please be considerate and be kind not to park your cars on pavement. Feel free to share video thank you.”

Disabled Parking.
Disabled Parking.

Hence the title, “Disabled Parking” simply because they cannot park – correctly.

Another friend remarked how the other day, after seeing the above video which demonstrates one of the daily frustrations the deafblind community faces:

There was a van parked on pavement of a quite busy road, there were a chap who lives near me who has blindness and uses a guide dog, last night I was walking Boris and I saw his dog refusing to go anywhere, I asked if he’s alright, he said the dog won’t go further or go in a different direction (because he only knows this specific route to home and he uses this route every day), I said there’s a van on the pavement and he said “But the road is very busy too!” So I assist him different way of getting home without having to go through the traffic. He was very grateful, I left a note explaining the situation and said if it happens again the police will be called on the van (and photo taken with date on it!”

Show us you care by being aware!

~ SJ (Sara Jae)

Never Look Down on Someone Unless You Are Helping Them Up.

The moment I read Teresa Garraty’s article on Limping Chicken “Is it time for deaf people to be a little less angry?” I knowingly smiled. I felt she made her point which in my eyes, from my own more than fair share of experience, was justified.

Her article very bravely made light of the facts around us because: “it is relatively true and reminds people not to take things so seriously. Not to be so immersed and concentrated. Not to be fighting all the time. It is not directed at people who campaign tirelessly but at the attitude within societies that give off those vibes of us not being a welcoming and positive community which is in turn misleading them?” As I gave my response on the back of it amongst other rather emotive feedback and watched some bitterness simmering which once again only confirmed Teresa’s whole point?

I concluded, “I just think if we come across as “angry” we won’t be heard but seen as just that. I can see her points from being on other teams and since I left those I can see those attributes which I have shrugged off as I do not want to be seen as demanding or “angry” but as welcoming and positive. Which would make inroads more? Being welcoming or being “angry” which is how hearing society is perceiving us? Hence why I said it’s misleading them because we aren’t angry. Some only appear angry. Most do react as though they are angry.’”

“When anger rises, think of the consequences.” – Confucius

With actions comes consequences: relatively soon after her initial supposedly “controversial” article, Teresa followed up with what she meant by her angry deaf people article to explain in depth, apologising to those she did not intend to cause any offence to, which I thought was admirable of her because members of the public chose to take offence? I was very concerned to learn that she was bullied as a result of her tongue in cheek article. This was sadly inevitable knowing how society behaves, yet it could have been avoided if people within the deaf community had their sense of humour about them. But perhaps their true colours were exposed instead? Who knows. I personally think Teresa should have been warned of potential back-lash from the more experienced writers and contributors but there is only so much people can help others with. Out of a negative, comes a positive. Teresa, in my eyes, is now wiser and more experienced regarding people’s ways.

Nowadays when someone reacts angrily, I am instantly reminded of Teresa’s article and once again smile. I know for a fact a friend of mine is on guard with the article ready to present before the offending party. That is who he is but for me, I so just know it is going to wind them up even more. ‘Tis best to let things be. Why? Because we can. There is no point in dwelling over an iota of bitterness because that iota is only going to grow into an ounce, which in time will weigh tons; becoming overbearing and diseasing your mind along with your soul. Paranoia will also creep in which one will eventually pass onto those around them. Deal with it.

“There are two things a person should never be angry at, what they can help and what they cannot.” – Plato

Lone campaigners have the passion and desire to see change out of frustration, due to the pace or finances others impose. This is highly admirable because it is a voluntary action which means sacrificing valuable personal time and sweat for a cause they believe in – I pay respect to each and every one who find it in themselves to be subjected to intense passion and genuine interest from the bottom of their hearts. It frustrates me still, to see “friends” patting each other’s backs behind the scenes. It is happening everywhere, the most blindingly obvious has to be the government who more or less went to school with one another.

We have seen several hardened and angry members enter the Tree House who over time have mellowed wonderfully and stayed on, with their sense of humour, trying to resist the urge to come out and joke along. Naturally there will always be one or two who lose their footing along the way but since people know how it feels to be bullied, isolated, singled out, put down and how it hurts to be kicked whilst down after so long, it has automatically become second nature to us to help them up on their way again. It is what you, the people are making it.

It is always healthy to exercise our free speech as nature intended, within reason and respect, in order to teach others. In the past I have been dictated to, to not say this, to not post that, to delete this, to remove that especially when what I said or had done in the first place was justified. How else will people learn, reflect upon, see things and others for what/who they truly are? There is always a balance and only a wise, experienced person will know when to control themselves.

“Never look down on someone unless you are helping them up”

– is another favourite quote of mine.

~ SJ (Sara Jae)

Eyes down for a full house!

As a school girl, history lessons were never at the top of my list, so my neighbouring classmate and I would pass notes to and fro, silently mouthing or signing momentarily to pass some of the time. Under the watchful eye of our history teacher, she once asked me with a hint of despair “Why don’t you enjoy history?”

“It all happened in the past and that’s where it should stay?” would be my usual response. Even to this day when speaking of past experiences, I tend to leave it all in the past. I could never see the reasons behind dredging up the past to learn from. Do we actually learn not to make the same mistakes or was it merely the power of suggestion for some to be challenged by? Some figures within the deaf world have published books and held lectures on deaf history. Once again, I find myself within that zone. “Do we really have to listen to that record?” I would ask myself.

Someone once implied we should listen to our forefathers and take heed in order not to make the same mistakes they did, in this day and age. I pointed out that in the olden days the attitudes and times then were different to today’s so why should we have to listen to what was said before our time and follow suit? When its the present society we should be listening to, adapting to and learning from in order not to make the same usual delayed reaction like generations before us have done so.

Walking through the bustling streets of London, I tend look up to admire the architecture whilst everyone else grudgingly looks downwards. Every being, structure has its own story to tell, in their own unique ways.

The opportunity arose to see the Supreme Court of United Kingdom. I felt a spark of interest. Purely because I have a genuine interest in the Law and worked at the Immigration Appellate Authority. But, this tour was the first one they would be trying out with STAGETEXT, live captions on a tablet. I had never experienced this form of communication support in the past so felt rather intrigued, seized the day and reserved myself a ticket knowing a few friends were also going. Two birds with one stone.

Upon arriving at Westminster tube station, I was at once overwhelmed with how touristic London had become. Cameras were in full force everywhere, motors revving past, the chatter of people, and the whirlpool of colours – spinning all around me. Then there was this idyllic backdrop in all its splendour, Westminster, The Houses of Parliament and Big Ben standing very proudly, tall and yet so intricate.

Having spotted my friend Rich, we decided to impersonate tourists ourselves by having our photo taken with Big Ben in the background. The hustle and bustle all around reminded me of the “Hands on ears” deaf awareness campaign so I asked this lovely lady if she would take a picture for us, of us. She smiled and willingly obliged. I suggested to Rich, “Let’s put our hands on our ears!” The lady seemed to question “Why hands?” in such a way that I realised she might be deaf aware so indicated I would explain after. She understood my body language. How strange but nevertheless posed for the #handsonears photo with our positive support regardless.

#handsonears
#handsonears

Intuition encouraged me to ask her, if she could sign. She smiled and signed “Yes” We smiled too in wonder, consequently holding a brief natter. What are the chances of that?! A tourist, who knew sign language supposedly had to cross our paths, right there and then.

Making our way to the Supreme Court, there stood a grand looking building decorated with stone carvings, sporting the Royal Coat of Arms. Walking through the front doors was like going back in time but with hints of the present and future. It was a mix of old blended in with the new. This was because the old building over time wore out and since restoring and renovating the building as it had previously used to be a courthouse, Guildhall and then a Crown Court better known as the “Middlesex Guildhall” before being chosen to date, the location for the Supreme Court. The stone walls and original chandeliers looked at home side by side engraved glass panels with combined phrases from the Judicial Oath et cetera.

Holding the tablet for the very first time, I had no idea what to expect. How did it work? I asked a very kind new face which I could now put to her name. She explained that it was all through Wi-Fi. The speaker would usually have a microphone that someone would listen from and type, which sent out live subtitles over Wi-Fi. I was a little dubious knowing how bad live subtitles were on the TV. Much to my delight, which at first was a very surreal moment, the subtitles started flowing on my handheld screen – I looked up and around me, smiling seeing how everyone was following with ease. Equally. It is a bit like seeing all the passengers around you on the tube looking at their phones but in a different setting, for entirely different reasons.

It was amazing how this technology worked, so quickly and accurately. As it was their first time, it was only natural there would be patches of areas where the signal cut out and tablets had to be rebooted but knowing the speaker was achieving this via a Skype phone call, who on the other end sat a most patient lady called Wendy. I have to say, I was very impressed. It was nothing like I envisaged it might be but better. Kudos to STAGETEXT for all their hard work in order to overcome barriers on an united and equal basis, so we could enjoy this experience we would never had been able to fully enjoy or understand without them.

Live captions on a tablet.
Live captions on a tablet.

On the first floor, there stood courtroom two and this huge impressive glass wall. An inspirational quote from the human rights campaigner Eleanor Roosevelt, which read “Justice cannot be for one side alone but must be for both” This stopped me in my tracks because it was extremely clever the way they designed it, to run along both sides of the glass panel.

The Supreme Court's official emblem.
The Supreme Court’s official emblem.

England: “A symmetrical five-petalled wild rose with stalk and leaves, an English symbol since the Tudor dynasty.”

Scotland: “A purple thistle, associated with the tradition that an early Scottish army was saved when barefooted Viking invaders stepped on prickly thistles in the dark, crying out in pain and waking the defenders.”

Northern Ireland: “A light blue five-petalled flax flower, representing the linen-weaving industry which was so valuable that nineteenth century Belfast was known as ‘Linenopolis’.”

Wales: “The green leaves of a leek, deriving from the medieval legend that St David ordered his Welsh soldiers to wear leeks on their helmets during a battle against the Saxons.” All four symbols placed inside an almost circular frame depicting Libra, the scales of justice, and Omega, representing finality.

These four symbols were also integrated into the carpet’s design – specially designed by Sir Peter Blake who is better known as the designer for the album cover of the Beatles “Sergeant Pepper’s Lonely Hearts Club Band”. The carpet reflected his personality and era in a psychedelic sense which seemed quite groovy.

A relative question regarding the design was raised; If Scotland was to gain independence what would happen to the symbol that represented Scotland on the emblem?? The answer which was not expected, was one of that the emblem would have to be redesigned (to remove the symbol) and the carpet would also have to be replaced! If needs be, needs must.

The Supreme Court poem was written by Sir Andrew Motion, Poet Laureate between 1999 – 2009, to mark the creation of the Supreme Court.

Tides tumbled sand through seas long-lost to earth;
Sand hardened into-stone – stone cut, then brought
To frame the letter of our four nations’ law
And square the circle of a single court.

Here Justice sits and lifts her steady scales
Within the Abbey’s sight and Parliaments
But independent of them both. And bound
By truth of principle and argument.

A thousand years of judgment stretch behind –
The weight of rights and freedoms balancing
With fairness and with duty to the world:
The clarity time-honoured thinking brings.

New structures but an old foundation stone:
The mind of Justice still at liberty
Four nations separate but linked as one:
The light of reason falling equally

The poem is also inscribed on the semi-circular stone benches opposite the main entrance.

The Library which is not open to the public was such a privilege to view, just being allowed inside. There was even a book on display from 1661! The whole building and tour experience left me feeling extremely grateful to be on their very first try out tour. There was a mixture of humour, education, technology and history. My goodness, if my history teacher could read this now – she would be rendered speechless!

The Library.
The Library.

So thank you ever so, to the staff of STAGETEXT and to Simon especially, who was our guide. He had a lot of patience and the right customer service skills needed. All the best and we shall look forwards to more.

~ SJ (Sara Jae)