Mask Warriors.

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Photos by SJ

I had to go into the local pharmacy this morning to pick up a prescription for my daughter, the staff were all wearing face masks.

Talking at me….

I’m patiently letting them know I’m not able to understand them as I am profoundly deaf and I cannot lip read them with their masks on.

They started pointing away here and there, still talking at me, I’m close to walking out but my daughter needs this prescription.

Someone gave me a pen and paper, I write down what I’m there for and who it’s for. Hand the pen and paper back… Prescription is found and she returns, trying to talk at me again.
I’m close to feeling emotional, anxious and once again I patiently remind her that I can’t hear her or lip read her because of her mask, or any of the mask wearing staff within that shop.

She realised and finally empathised, lowered her mask and spoke to me with a smile in her eyes.

What a world of difference that made. 😏

I had to go to the bank last week to sort an issue out, the staff in there were wearing those transparent facial shields – it may have been surreal still but it was certainly a lot more “friendly” and we could still easily communicate. I’d pick that over a face mask, any day.

~ SJ (Sara Jae)

Deafness Blues

Challenges ahead

I was reminded today just how hard it can be, to be deaf.
An ATM was hungry and gobbled my bank card – not that anything was wrong with my card or account. Stupid (Link) machine played up. Arse.
Panicked a little as I had both X & X with me. I looked at Y in despair and said “My card is gone.” He also knew it was the machine and not my card cos I’m good that way 😜
Banks were closed… tried calling a number via my phone but I’d no credit. I’ve the minutes!! But not credit to call their rates… my money was in the bank. My card was in the machine.
Double arse!
Y’s luckily has dual SIM cards so he could use one of them to call the emergency line with.
Braced for hassles because he was speaking on my behalf.
“I need her to speak on the phone”
“She’s deaf, she cannot hear on the phone.”
Five mins later, I was asked to say my DOB into thin air, phone next to my lips.
How surreal.
Then my address.
Spoke to the ghost again and pushed away the phone. How uncomfortable that was yet it had to be done.
Bearing fraud in mind, card was stopped and a new card ordered.
X looked at me the n amazement, “What if you couldn’t speak clearly enough?!”
A night of despair and undue stress would have been the order of the day otherwise.
Gratitude overcame me and thanked Y for his help.
How frustrating.
For us all.

Treble arse.

~ SJ Sara Jae)

Update: There is no need to use Signvideo (which is only available with several banks) or Typetalk because downloading a mobile banking app will do the job. And then some.

A Pleasure To Meet You.

I was encouraged by my best friend to share a video, that my daughter managed to sneak off me. (The little minx!)

I had previously been too fearful to share it because in it I speak. (I say “Is it recording?”) The last time I spoke in a video which was for the BBC, the fall out was unfortunately, predictable.

Too many people presume (albeit dangerously) and try to dictate our choices rather than respecting them.

By the way, I have signed ever since I could, because I have deaf parents – I believe in total communication.

So, come on over to The Tree House and meet me, cyber wise. Do feel free to share your videos too.

Positivity rules! 🙂

~ SJ (Sara Jae)

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.

The “Read My Lips” Challenge.

A lip-reading challenge called #readmylips was set upon the Tree House dwellers by Kimberley Lucas which the members embraced with open arms and acceptance. A series of lip reading challenges ranging from easy to difficult not to forget memorable and humorous was the result. However, this shall not end within the Tree house as we invite you, to guess the song/poem we are silently reciting and once you have – please challenge others too as this is all part of raising awareness about Lip-reading.

Lip-reading to some comes naturally while others are self-taught and others rely on sound and context for assistance.

Have fun with these #hotlips and ‘Carpe diem’ !

~ SJ (Sara Jae)

Damned If I Do, Damned If I Don’t

I have decided to seize the day in order to try to end the on-going issues from last week’s chain of events. It is time for everyone else to put it to bed and move on. Respect all around x

“Hello Everyone,

Last week was a bad week for me and I’m sure it was the same for other people too.

Why bad week?

Because people criticised my choice of what to do. Last week, people didn’t respect the various communication needs and differences.

Last week, people attacked me because people made videos which were divisive, not only one but two, three, four and so on. Through all of them, people criticised.

I feel nervous making videos because never make but last summer I did make videos for one person but that person hurt me a lot. I didn’t feel I could make videos so stopped.

Last week I talked with one person by making videos again. Why? Because I wanted to sort out the problems and I don’t want bad feelings between us. We corresponded by sending video messages – all sorted out. Not easy.

Same other people when I sign I feel concerned about being criticised but now I don’t care because I will do what I feel is right, what is inclusive of all.

Lot of people think if (I) we can sign and speak as well, it is an easy life – no, you’re wrong. We (I) suffer more.

You see last week, what happened? This was out of our control. The BBC decided to make this video of which I did not know there would be other speakers too, I didn’t know but I was happy to see their video showed speakers to show the variety in the end. But when they did the interview, I didn’t know.

The first interview, I tried to sign and speak which no one knows about. People still criticised me. Not my problem but yours. The second interview, I felt like speaking because it was easier (to a hearing person) quicker so we could all leave. Also because the other people that was there all signed. I felt I wanted to show equality as there was signers but no speakers so I braved it and tried my best to speak, the interpreter present knows this and he stayed just in case I changed my mind and wanted to sign instead. I come from deaf parents and my first language is sign of which I know is not perfect but still I braved it.

If I sign, im damned if I do, if I speak, im damned if I do. I cant win.

When I see people using sign language, I feel others should try to sign, add subtitles so those wont be left out. When I see orals or typers I feel like I want to show sign so all is included.

Our Tree House, if people want to put BSL videos on – welcome. I will volunteer to transcribe and I have done so in the past to make sure everyone is included.

This morning I woke up and saw numerous videos on FB with sign language in. It was good and nice to see but still it means I have mixed feelings. Why? Because only signers will understand and the speakers who write cant understand. I feel like I am being torn, can’t win, always stuck in the middle, hurt because want to see everyone being equals. Don’t want signers to be left out, speakers to be left out.

The Tree House is about equality, showing respect no matter what your communication needs are. At the same time, while its good to see signing more in videos but on the other hand it is appeasing the bsl using community to make them feel better because we know they feel “Where is sign language?! “We have to hold onto it!” worrying it will cease. Don’t worry, wont cease.

My view, Facebook is only for social media. Sign language videos will make people become more addicted. It is also not a replacement for real life. In real life, there is a strong community. Facebook is only facebook,

Last week, people spat their dummies, behaving as if everything had to be done “my (their) way!, me me me me” Not everything is about you, have other people with different communication needs, difference schools of thoughts, need to remain calm and not spit their dummy, behave like a baby, throwing toys out of their prams.

Then what happened? People made videos of which some points were not true which is why I stood up for myself (as I was there!) because I am a big believer in the truth, I don’t like lies. Last week, people who made videos, I tried to tell them they were wrong and it was misleading. (People were jumping to conclusions based on assumptions) should have said what was right and I tried to explain. What happened? Their friends blamed me.

People sent me messages which were not very nice, people oppressed me, dictated to me as well as to other people. Hold on, don’t forget, I am from deaf family and I do sign. If you want to judge me, you’re wrong to do so.

This is another form of bullying. If it continues, I will take action.

Sorry about my signing, I feel nervous because I don’t like videos. I worry that people will download them and edit accordingly to portray those as a bad person. This is another reason why I don’t make videos, we have to be careful, for safe guarding.

I hope everyone will carry on respecting the different communication needs and not only sign language or only speakers. There are people who are in the middle. Need to open, have an open mind as well as respecting. We can’t do “My way, me me me” all the time – it won’t work. People (outsiders) will view us and think we are childish.

Just imagine last week, if hearing people saw what happened – they would think “My god! So that’s what the deaf community is like?!”

My conscience is clear, I tried my best, if people want to criticise and bully me – not my problem.

While im signing in this video, I feel mixed up because I know some of my friends wont understand so I have to transcribe also. It’s only fair.

Facebook is only for quick posts, not for life stories or continuous videos, Just quickly contact because it is visual. That’s it. It is not a replacement for life (in general).

Nervous. Thank you for watching and hope you understand me well.

Bye”

I am only telling it like it is as honesty is the best policy – life is too short yet please spare a moment to remember how to prioritise, triviality versus Apartheid? No contest.

~ SJ (Sara Jae)

Update: Here is another version of last week’s chain of events by Paul titled “Who really cares?”