Therapy, The Deaf Way.

therapythedeafway

By SignHealth.

Over the past few weeks I have seen a campaign by SignHealth and their supporters from within the deaf community, steadily grow.

I wanted to share with you, my personal experience.

At one point last year, a deaf friend was concerned enough to put me into contact with someone offering their professional help except, how could I talk to them when their sibling was one of the bullies? The deaf world was much too small, typical and predictable for my liking. I felt extremely claustrophobic.

Eventually, my GP referred me for counselling to help lift me out of my depression and certain trains of thought. Members of the deaf community had brought all of my life altering experiences on so it was only natural for me to want to stick with a local counsellor, who was hearing and had very little (if no) experience with deaf clients.

My counsellor began the first of our many intensive sessions, asking if an interpreter should be present to help us communicate with ease. This was enough reason to make me clam up. I refused their offer politely and asked if we could continue without one, as I was confident it would work.

I did not at the time trust anyone that had any connections to the deaf community; enough to be anywhere near me. Not even an interpreter bound by confidence because they too, I could not trust.

In time, my counsellor’s deaf awareness grew with each session and once they took me by surprise by saying, “I am glad we didn’t use an interpreter because you would not have told me everything. You would have been extremely cautious. I did not think our sessions would work without one and you proved me wrong. You have taught me that not every deaf person needs an interpreter present and not every deaf person relies solely on sign language.”

Their acknowledgement and increased deaf awareness made my heart smile. I suddenly felt freer than I had ever been and that feeling of being finally understood, not just me but the deaf community too, how diverse it actually is and how our needs and abilities differ, was priceless. This was therapy, albeit my way.

Each to the their own for reasons that should be known to themselves, only.

It is vital that we fight to retain our choice to be counselled however we wish, be it the deaf way or the hearing way in order to be at our most comfortable, for our therapy to succeed. And for that, we should be grateful such a service like SignHealth exists because they do work, for those who choose them. For those who need them. For those who solely rely on sign language, for they do exist.

No one deserves to be ignored.

I wish SignHealth all the best with their latest campaign, to continue providing “a national psychological therapy service where all the therapists are fluent in British Sign Language (BSL)”.

#TherapyTheDeafWay

Finally yet just as importantly, I would like to applaud SignHealth for adding captions to their videos, making it more inclusive and accessible to all. Thank you, for doing so. 🙂

~ SJ (Sara Jae)

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Anisa And Samian Face Deportation

There is a petition that is fast being shared via social media directed at the Home Secretary, Theresa May, to grant Anisa and Samian indefinite leave to remain.

“They have been living here with their loving foster family since they were abandoned by their parents in January 2013. Anisa and Samian are both profoundly deaf. They have attended mainstream schools in Tower Hamlets and are now at a specialist school where they are learning British Sign Language (BSL). Their foster family, with the support of Tower Hamlets education authority staff, are also learning BSL.

The Home Office claim that Anisa, Samian and their foster family are lying. They claim they are still in touch with the children’s parents, but have provided no evidence to support this. There is an appeal hearing to decide the case on 30th March.

As members of the local community, we demand that Anisa and Samian are allowed to stay in the UK where they have an established network of care, support, friendship and specialist schooling which meets their communication and educational needs. If deported, they go back to a very uncertain future in Bangladesh. It is disgraceful that such vulnerable young people should be treated in this callous way by the British Government.”

Having worked for the Immigration Appellate Authority in the past, they, the Home Office most likely will have the evidence required or, the lack of supporting evidence from the appellants to reach this determination.
Otherwise, what the public / the appellants need to do is prove that they genuinely fear for their lives upon being deported to their homeland.

Anisa (14) and Samian (12)

Anisa (14) and Samian (12)

~ SJ (Sara Jae)

 

Views From The Velvet Prison by Mervyn James.

Mr Mervyn James.

Mr Mervyn James.

The culture gig is, basically, a response to isolation, and controlled environment approaches… not in-built genetic norms of any kind, since only point 2% of the entire deaf area with profound loss that relies on sign language, has a true genetic background. I do not think we do deaf children or deaf adults a service by pandering/recognising that Isolation as an acceptable norm ever.

It can be seductive to think we/they are ‘with own kind’, but the ongoing effect and lifestyle is isolation.  Many years when I started out and went profoundly deaf, I called this ‘The Velvet prison’… cool, cosy, and a defence and ultimately a refuge against a hostile hearing world, mainly because the belief is it is too tough out there… it certainly was for me at that time.

Now, I’d rather push access and education to break that up, so true equality and inclusion is seen in real time and not an occasional favour both mainstream and the deaf sign users go with occasionally, ‘look busy we are being watched..’ sort of thing. To use a rugby term, it was ‘going through the phases.’ but then failing to follow through to score a try at the end.  Playing the game not really expecting an end result.

There is no access, no equality, and no inclusion unless, we are all in it together, if that isn’t the case, then what we see is a ‘secular or segregated’ approach, whereby those who feel they are unable to avail themselves of the ‘bridges’ of communications, or utilise the laws that exist to enhance integrations between hearing and deaf, who are then doomed by default, never to take any active part in their own inclusion.

For many adults it is already too late, you can’t teach some of these old dogs new tricks, and they are perfectly content to stay as they are, ‘all deaf together’ or ‘all hearing Impaired’ together or even ‘all hearing together.. well, all of some or other together… but we do need to stop these views being portrayed as a virtue and part of being a deaf or person with other hearing loss. Isolation is not a cultural trait, it is a norm forced on people by a lack opportunity to break out, via discrimination, or oppression, or simply by personal choice.

That need not be the case for all but a very few. It has to be said, many with hearing and hearing loss, but not profoundly deaf, do seem to adopt the ‘let’s leave them to it..’ or ‘cest la vie..’ approaches, and they/we should not be doing that because it feeds the view isolation is inevitable, or even a lifestyle choice and right.

Occasionally it can look like ‘Not our business…’ and then divides become apparent, acceptable and very real.  In reality the ‘non-deaf’ with all their varieties and degrees of loss are at present not visible, unlike others who are HIGHLY visible through sign mediums, but the ‘non-deaf’ are the least empowered of all…. If you talk about ‘Invisible’ disabled then, that is us, it certainly is not someone deaf who signs who cannot HELP but be visible.

It may account for people who represent those areas latching on to aspects of sign so their issues can be seen too. It doesn’t work given the huge profile of signed language currently, and the awareness approaches that seem to be opposing each other by virtue of the fact they use different means to communicate, and/or a mixture of such approaches that the more ‘purist’ of deaf advocates don’t approve of. There is now a division of communication approach that polarises people. Deaf awareness never worked, never will.

Probably the biggest issue all with hearing loss now face, is how to pursue own access to the ultimate aim of acceptance and integration. Utopia will not happen. Even Martha’s Vineyard, which was held up as a yardstick to true deaf-hearing communal acceptance, disintegrated when that isolation was broken. In the Middle East, a whole tribe of nomads near Israel are near all deaf, and face the same outcome.

Perhaps herein lies the real reason for the pursuit of culture with some deaf, if that isolation, (which is the glue that holds the deaf ‘community’ together), is broken, then, so is their social base destroyed, certainly put under extreme pressure, who wants to be alone ? A powerful reason to pursue a cultural ideal.

~ Mervyn James.

Who can also be found at “At The Rim.

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…

~ SJ (Sara Jae)

 

How Would You Like To Be Called?

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

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

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

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

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

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

How would you like to be called?

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

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

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

Patience is a virtue.

Patience is a virtue.

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

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

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

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

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

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

Carpe diem!

~ SJ (Sara Jae)

(Update: A few months after sending this to the hospital and relevant parties concerned, I returned to ENT to find their digital screen as photographed, displaying patient’s names as they were being called… Result!)

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…..

~ 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)