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.

~ SJ (Sara Jae)

Latest Hurdle in Renewing Freedom Pass.

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

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

“Dear Sir / Madam,

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

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

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

rules

Guidance to Local Authority PDF.

Freedom Pass website.

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

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

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

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

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

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

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

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

Regards,

Sara Jae.”

 

(Full name not disclosed on here for privacy reasons)

 

Updated on 12/11/2014

My second email:

Dear Sir / Madam,

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

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

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

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

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

whether someone meets the criteria.

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

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

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

Thank you ever so, for your time and patience,

~ SJ (Sara Jae)

 

 

Updated 13/11/2014

A response from one of my councillors:

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

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

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

Regards,”

 

to which I replied with;

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

To be concluded….

 

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

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

Deafness in Sport by Jennifer Wilson

I was born profoundly deaf, and enjoy life as much as the next person. I do think it is fascinating that the country is becoming seemingly more accessible with their curricular and non-curricular activities, whether sporty or not (even though I do not consider myself a sporty person, or attend any sports events).

Surf

But in my view, there is still much work to be done. Perhaps the reason I do not participate in sporting events and clubs is because, although I seem reasonably confident as a deaf person on the outside, I still fear marginalisation and belittling. There have been times where I have tried to get involved with a society, only to be told I must be placed in a section designed for people who have limited knowledge of that particular activity (even if I do have knowledge!!), or worse isolation, because either I would distract other students, due to my deafness OR I am – apparently – incapable of understanding simple instruction.

This brings me to realise that people sometimes treat disability as if it is black and white. Where deafness is concerned, people assume that we ALL must be BSL users and therefore unable to communicate using speech. This is not the case; deafness is very complex, as there are many different varieties of deafness, and deaf people use many different methods of communication. Yes, a lot of deaf people use BSL/SSE as their main form of communication, but not all of them do. People assume we must join a ‘deaf only’ group, and we simply must be a BSL user because we are deaf. Everyone is different. Some people may have used the same language since they started communicating, some people may have switched to a different communication method at some point in their lives. This does not make them unable to communicate, it just means they PREFER to communicate in a certain way. It is up to us how we want to communicate, and we do try our hardest to make things easier for you to communicate with us. Please try and meet us halfway.

However, in the rare event that I have been able to join in with the so-called ‘normal’ people in sporting events, belittling still rears its ugly head. Either the instructor will shout out to everyone that there is a deaf person in the group, and to treat me with respect, or they will ask me in front of everyone how I want them to communicate with me. (Cue feeling smaller than a dust mite). I’m all for being treated with respect, but I do not want people to be “especially nice” to be just because my ears do not work! Without meaning to be crude, how would a ‘normal’ person feel when participating in their favourite hobbies, if they were treated every day as if they are about to die?

Whatever happened to customer confidentiality? Disabled people are perfectly capable of feelings, and consider being asked in detail (without permission) about our disability in front of a massive group, (especially with people we have never met) quite as rude and embarrassing as asking someone how they got that massive scar on their forehead, or why they are so cross-eyed, pointing their deformity out for the world to know. The best action to take would be for the organiser/instructor to e-mail and ask beforehand, or take the deaf person aside, and ask them what their preferred method of communication or help (if needed) would be. Deaf people do NOT wish for “special treatment”, no matter how kind people think they are being. It would be much less marginalising for organisers, instructors and fellow students to treat us just the same as everybody else. If we want the other students to be aware of our disability, we will either ask the instructor to tell them, or tell them ourselves.

This brings me to another more complex problem, regarding other students. If they decide to be accepting and offer their help, fantastic! But more often than not, other peoples’ help can prove to be more of a hindrance. People get so absorbed and fascinated in helping us to communicate, that they actually answer questions for us without our knowledge! This is condescending, if not downright dangerous. Think of it this way – would you answer for a ‘normal’ person, if they were about to sleepwalk into a busy road? Would you answer for a ‘normal’ person, when asked what they wanted for lunch, then accidentally order them something they are allergic to? The point being, although we may need some extra time or help for communication, we are perfectly capable of independent thought, and are able to make our own decisions, and would much rather be able to answer for ourselves.

It would be extremely beneficial for sporting companies and the general population if more awareness was raised about disability, by organising compulsory disability awareness training, and organising more than a select few methods of communication. Some companies only offer telephone communication, which can be difficult and also make deaf people lose their independence. Would you want to be forty years old and have to ask your six-year-old child to phone the leisure centre and ask what time the swimming pool is open?

I am aware that some companies do offer e-mail as a method of communication. The problem with that is that people do not sit at their computer for hours, just waiting for an e-mail. Another potentially problematic part of this is that, if a deaf person was awaiting important information or class times, they would not receive this information until it is regrettably too late.

Companies and societies that claim to be disability/deaf aware do need to take a good hard look at how they are approaching the problem. If they are unsure of whether they are doing the right thing, they do need to find a way to contact deaf people, and ask them how they would want to be treated. Relying on information from an uninformed source can have disastrous consequences in the sense that they have thought up the information for themselves, rather than asked someone who is deaf what the best action to take would be.

Overall – ASK US – NOT other people. We do not get offended when people ask us how we want to be treated or what help we need (if any), but we DO get offended when people ask others for our opinion. Remember, everyone is unique.

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 deafblind 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)

Pierce Starre: Breaking free: Part 1

Last Friday, June 6th 2014, young Mr. Pierce Starre set off on his 30th birthday into a 30 day journey of the unknown.  Did he jet off to a faraway country? Sail to the middle of the Ocean? No, he went somewhere better… somewhere closer. That somewhere is right here, on our doorsteps. England! We truly do have a beautiful country, we just need to open our eyes and see, walk a little further from the towns.

Pierce Starre: A child of deaf parents, a caring partner and a wonderful father.

Pierce Starre: A child of deaf parents, a caring partner and a wonderful father.

His journey started in Derby, the place where life finds him now, and will end on the 6th July at Whiston Hospital just outside of Liverpool, the place where his life began; but has never revisited. Pierce did not rigidly plan his journey, just the general path; fate would decide how his journey unfolds.

Breaking free

Breaking free

In the opening of his blog BORN TO BIRTH Pierce tells us that his journey is about exploring the notion of living unconventionally, that too many of us are trapped by the routine of life and we seldom break from it. So far Pierce’s exploration has evolved to something far more than what I believe he was expecting. Along the way he has met many people – all of them with kindness in their hearts, and Josephine the lady who will save the world along side him! His sleeping arrangements have varied over the past 7 days from pitching a tent in the middle of a lush field to a stable and a Wendy house! All of the people he has met, places he has seen and slept can be found on his blog (link supplied above).

I personally have been enthralled by Pierce’s journey so I sent him a cheeky little message asking if I could interview him over the entire period of his journey. To my delight, he agreed! So here I give you a haphazardly put together interview to bring you Pierce’s feelings and views along his journey.  At this time, of asking, Pierce said, I quote…

‘I have a feeling of completeness in my heart. I feel alive.’

Kirsty: It has been a week now so I must first ask how are you?

Pierce: I am in good spirits. I initially was struggling with my foot which flared up due to inappropriate shoes I began the journey in but I purchased a new pair and soothed them in rivers and collected rainwater, it has now cleared up. Hay fever and aching shoulders, due to my heavy bag, are my main grinding factors at the moment but my determination and focus gives me the strength to continue.

Achy feet!

Achy feet!

Lizzie: What is your philosophy and how does it relate to your journey?

Pierce: My philosophy: One Life, Embrace It. I think this probably is evident in my journey.

Kirsty: I am loving every minute of your journey, I love the photographs, and the way that you write. Through your words I am there, absorbing your surroundings, I can see the conversations, the smiles and crinkly eyes. I love Josephine, Calv, the stick, and the horse shoe. Which part or parts are your favourite/s so far?

Pierce: The journey as a whole has been wonderful, each moment is unique in itself. I don’t have a particular favourite. I am overwhelmed by the kindness, the people I have met and stories I have learnt. The beauty of Nature. I will say this: I am glad I broke out my systematic life to experience all the incredible moments. We can all do it, we just need to learn not to fear.

Kirsty: Paul and Andrea, they are an interesting couple and I loved reading about them and of showers in the rain. Here is a cheeky question – have you showered in the rain yet?!

Pierce: I haven’t experienced a shower in the rain yet however if it rains on this journey again at some point, I will put myself out there and do it, after all I don’t get many opportunities to shower on this journey.

Kirsty: Thank you!

Pierce: Thank you for your continued support I really appreciate it.

You can read all about Pierce’s journey on his blog which he updates daily. Next week we will be contacting Pierce again to see how he is getting along, to ask more questions to bring you “Part 2”. If you have any questions that you would like us to ask please feel free to ask us on here or on our Facebook group.

Thank you for reading and have a lovely weekend wherever you may be 🙂

– Kirsty Vessey

(For part 2, click here to read)

– Kirsty McMullan.