‘Ishaare. Gestures and Signs in Mumbai’ by Annelies Kusters

“Ishaare” has a double meaning: it means “gestures” in Hindi and Marathi, but it also means “signs”, as such indicating that there cannot be made a strict distinction between them. However, whilst there seems to be overlap between gestures and sign language, they differ too, as the protagonists of the movie show and tell us. The film “Ishaare” documents how six deaf signers communicate with familiar and unfamiliar hearing shopkeepers, street vendors, customers, waiters, ticket conductors and fellow travellers in Mumbai. Reena and Pradip, who is deaf blind, go grocery shopping along local streets, in markets and in shops. Sujit, our guide throughout the movie, communicates in public transport. Mahesh is a retail businessman who sells stocks of pens to stationery shops. Komal runs an accessory shop with her husband Sanjay, where most customers are schoolgirls. Durga is the manager of a branch of Café Coffee Day, an upmarket coffee chain. When enquiring, selling, bargaining and chitchatting, these deaf and hearing people use gestures and signs, and they also lipread, mouthe, read and write in different spoken languages. In the film, they share how they experience these ways of communication.”

A film directed by Annalies Kusters.

‘The Reality of Cochlear Implants’ by (Confessions of) a Deafblind Mother

Reality vs perceptions

Reality vs perceptions

SJ passed on a link to a very insightful blog, to our Facebook group and we liked it so much, that we think it deserves to be shared with everyone else.

The writer in this blog has remained very realistic about cochlear implants, which is very close to our readers’ experiences also.

It is somewhat dejecting to realise that the media has not been able to grasp the whole truth concerning CI’s – they give the impression that we will be able to hear perfectly well, almost instantly upon activation whereas that is not the case for most, if not all, of those who were inplanted.

Please visit ‘Confessions of a Deafblind Mother’ to read her very interesting article, ‘The Reality of Cochlear Implants’.

http://www.deafblindconfessions.com/blog/the-reality-of-cochlear-implants

🙂

Thank you.

‘Make The Most Of What You’ve Got’ by Martin Griffiths

At least three people have asked me what gig was I going to see and misheard my reply. I told them I was going to see ‘Wolf Alice’ and one said “Oh, wonder if he will play his didgeridoo?” and another said “Isn’t he in prison for being a dirty old man?”. “No, no, no, I am going to see Wolf Alice NOT Rolf Harris!” I think the number of hard of hearing people will be increasing soon.

I also constantly get asked how can I enjoy gigs as a profound deaf person with severe sight loss. Easy answer is I accept that I cannot hear or see the same as others do but if I prepare properly I will get some enjoyment from

a. Being out of the house

b. Being in a gig atmosphere watching crazy gig neighbours singing and dancing

c. Enjoying what I can hear or see and not stressing about my sensory losses.

Photo by Martin Griffiths

Photo by Martin Griffiths

My preparation for ‘From the Jam‘ at Barry Memo Arts on 26th  March 2016 started with contacting the band via their Facebook page and asking for a setlist. They duly obliged with a warning that on the night there may be late changes. They did appear to drop two songs but lesser known ones. This threw me a little but knowing the songs expected next helps me tune into the song via memory and what my hearing aids pick up.

Tip – if contacting bands via social media it is usually better to contact direct via private message as many bands are not keen to share setlists unless there is good reason.

Often I will search sites like Setlist FM ‘www.setlist.fm‘ for setlists from the latest tour of the band I am going to see. These lists are fan generated and accuracy can vary although I generally find them to be reliable.

Next step is to listen to the tracks via direct audio input to relearn the songs and also checking lyric sites and apps. This can help although often bands rearrange popular songs or do medleys which can be challenging.

Using apps like Soundhound and Musixmatch can help with identifying songs and discovering lyrics often in real-time. The apps may be more successful in linking with pre-recorded music. Live music tends to come with audience generated noises that confuse the apps.

Preparation done so now time to get the ticket and head to the gig. I hope for the best but still look to using my experience to increase the odds of a successful gig. I discovered that in small venues you often can put your hands on speaker stacks and pick up additional information through vibrations. Dont stand in front of the stacks as you may lose the little hearing you have left. I often stand to the side with arm outstretched to feel the music and I hear better.

It is also wise to play with hearing aid settings too. I often find having one hearing aid on the omnidirectional microphone setting and the other on unidirectional works best for me. At one gig someone threw liquid and I took the wet aid out and discovered having one aid out helped me pick up bass notes more easily. Different gigs and venues may require different combinations of hearing aid settings.

I never hear the banter between songs and often fail to hear a familiar song.Time to stay positive and pluck up courage to ask a neighbour what that song is!

Often I have to move about to find best sound spot and it helps to be close and get visual clues. I guessed we were starting Pretty Green just by watching the rhythm of the guitars and drums. I was in the front row so had some visual stimulus.

If I did not know the songs I may still enjoy the broad sound and guess what they might be singing. I know Eton Rifles very well but if I did not I might look at people singing along and think its Eating Trifles!

I tend not to sing along as for some reason doing this reduces what I can hear. I need to concentrate.

It’s not easy but I have to be positive. I sometimes have a beer and take part in some crazy ‘dancing’ but if I do I will lose some of the already reduced quality.

Gotta keep getting whatever enjoyment I can when I can. My sight and hearing reduce each year so there is no time to waste.

Positivity rules.

🙂

By Martin Griffiths.

Martin Griffiths

Mr Martin Griffiths

The next hurdle

Some of you will remember my friend’s previous post “Seeing is believing“, well, here is another interesting update.

“Today I had to pay the eye hospital another visit. This time around was a lot more stressful in the sense that I had to rely on the public for their kindness, patience and assistance.

I was given eye drops on the spot so a test could be undertaken. This meant my eyesight would be temporarily blurry albeit for a good few hours only. I tried not to go into panic mode as my thoughts returned to the journey home, by foot, train and bus. How would I manage all that? One pondered.

Unfortunately, patients’ names are called out at this particular hospital so I could not help but daydream, gazing at the floor, unable to focus on anyone around me. I found myself trying to listen perhaps to compensate for the temporary sight loss. Each time a name was called, I paused to see if it sounded similar to mine until one name when I thought, “Ooh, was that my name? It could have been but perhaps not because the receptionist hadn’t come to alert me.” Doubts crept in as intuition told me that was my name so I looked up to appease my nerves and saw the nurse who had earlier, done the eye drops, approaching me and with her hand, waved for me to come. I explained to her that I could not focus on anyone’s lips. She understood. The doctor DID call my name. (Go me!)

While my hearing aids enable me to hear so much more – not being able to focus, I could not really hear as well which proves to me just how much we hear with our eyes – it became clearer to me just how unfair playing the deaf card can be. I never used to question why deaf people thought they were entitled to pay only half of their TV license fees, like those with blindness do. “It’s only fair,” they would state… ‘Tis not fair at all for blindness alone causes one to be so much more dependent, stressed and isolated than deafness can. Our eyesight is extremely precious, hearing less so. However, when it is combined?

When those who happen to be deaf, try their luck in taking advantage of any privileges that is usually taken for granted, they run the risk of offending those so much more entitled. For sure, there are those who rely on solely sign language and for some it can be a matter of life or death but for most, not really, because they can at least understand the nation’s language, be it written or spoken.

The eye doctor, who made every effort possible to speak extremely clearly, put me at ease very quickly. I could see enough to gauge, and what to do next all the while making mental notes of how it felt being unable to see, so clearly, for your information.

For example, I noticed how much more comfortable it felt to look down, it put less pressure on my eyes and relatively, my headache – no or less visible noise for my eyes to try to focus on. I also wondered if I was standing and holding myself, gazing to the side as a blind person usually do.

Eventually, I was free to go except the prospect of the journey home filled me with utter dread.

How was I going to cross the roads safely? How was I going to know which destination on the train it would be or which line the train was? Alternatively, which stop it was? How this and that, I could not answer.

hurdles

The first hurdle was taking a few tentative steps outside but I had to be brave and just go for it. I expected to see a green man at a crossing to indicate when it was safe to cross but it was not a man, just a green blob.

I had no choice but to retrace my steps home – from memory with an abundance of patience.

The next hurdle was checking I had the right (train) platform home. I decided I could only follow the colour of the tube lines I needed and then when I needed direction as to take which platform, I took consciously longer to look at the shape of the words, indicating its destination. Did the size and outline of their word match the word I had, in my mind? If it did not, it had to be the wrong platform. I had to triple check with myself before I had the confidence that I was going in the right direction.

The next hurdle was to be sure of the next train’s destination, or was it to be a train meant for elsewhere? Under so much stress, I reminded myself to look at the word once again; did the size and outline match? Yes it did – quick double check, yes off I jumped onto the tube. How would I know when it was my stop? This was not my usual or local train so from memory I recalled the stops on my way there, counting on my fingers – putting each finger down for each stop. When the time came to change lines, I underwent the same motions not once but twice more. On the last tube change, I could start to relax being in familiar territory.

The next hurdle was in catching the bus home. The people traffic by then had worn me out; having been on tenterhooks the whole journey, hoping people would be mindful and patient with someone who may have looked extremely lost.

As I stood at the bus stop, leaning against it, I could see in the distance a bus but it was stationary. At least it is coming, or so I thought. I realised I was still waiting… The bus had not yet arrived yet it was still there, in the distance. Perhaps something serious had happened. Still, I was kept waiting. What could the matter be? I then wondered if… the bus was actually a bus or a town house. Of course, that explained it!

Finally, a bus turned up except no one could get on it. By this time, I put my instinct into people power and followed them to the next bus behind. I was completely exhausted, mentally.

There were several text messages for me, on my mobile; I tried to remain calm, not being able to read them to understand if my kids urgently needed me. I had to ignore the texts… of which, my daughter read for me once I got home and responded to.

Of course as with last time, I later indulged in some sensuous chocolates but that is no longer important as I know there will be many more trips to endure to and from the eye hospital yet I do not mind because I anticipate that with each insightful experience, one will become wiser for it.

My respect is well and truly reserved for those who genuinely need attention, not those who want attention.

Let us move on from campaigning for additional deaf rights, more deaf awareness when we should be supporting those campaigning for more deafblind rights and awareness since it would benefit every single one of us.  If it were not for any of the few colour designated posts, i.e. green man, different colour tube lines, I would not have managed to get home – independently. Who then, deserves our consideration and assistance, the most?”

~ PAL

User research with people who are deafblind: it makes Sense by Joanne Schofield

The lovely Simon Hurst​ has shared yet again another link (on behalf of his colleague) with the Tree House dwellers in the hope that we could all share it, comment on it and help them to perfect PIP that bit even more so.

“Often the people who need to use government services the most are those who find it the hardest to do so. They don’t want to interact with us – they have to.

I’m a Content Designer with the team building the digital Personal Independence Payment (PIP) claim, a benefit for those who have difficulties as the result of a health condition or disability.

We want to make the digital PIP claim as effective as possible and I make sure what we write meets the needs of the users clearly, simply and quickly. If you’ve seen the existing paper application form for claiming PIP, you’ll appreciate this is no mean feat.

I recently joined our user researcher, Simon Hurst, at Sense, a national charity that supports people who are deafblind. Deaf-blindness is a combination of sight and hearing loss that can affect a person’s ability to communicate, access information and get around. There are about 250,000 people who are deafblind in the UK, many with varying degrees of vision or hearing.

We met with five deafblind users to get their views on how we could improve our latest version of the digital PIP claim….”

Please visit and comment on the *original source* to read the rest of her entry. Thank you very much.

Joanne Schofield -content designer, DWP

Joanne Schofield – content designer, DWP.

Seeing is believing

 

blurred-vision

An article written by a friend of mine who is deaf who is also having an issue with one of her eyes.  A very interesting read!

“We always seem to learn facts from those amongst us who may be deafblind but never experience it for ourselves, in order to be able to understand and relate in full. Therefore, here is a particular albeit very new experience of mine because, seeing is believing…

Without delving into the medical side of things for privacy reasons, I am once again unbelievably grateful for the NHS today. Without them, every one of us would have a very different story to tell. Having been born deaf into a deaf family, I was also exposed to people who happened to be deafblind which meant I never really took my eyesight (or anything else!) for granted. I know from not just my own experience but also others too, just how incredibly scary it can be, realising and seeing how quickly an organ thus relatively a life can deteriorate. It can be as sudden as a blink of an eye.

I had been getting a red eye now and again that was becoming bothersome but since it was not infected, my GP suggested I pay a visit to the A&E department at an Eye Hospital.

The moment I walked into the reception area, I sensed just how chaotic it was but patience prevailed and I made sure the receptionist understood I would not be able to hear when my name was being called. He quickly reassured me and said he will make sure they know and if necessary, he would call me too. As I went to find a seat, there seemed to be only one row of seats facing towards the communal area where names were being called out. All the other rows of seats were facing the other way, the wrong way in my opinion. There was also some elaborate hand waving going on, all dedicated to yours truly which I admired and appreciated. After all, their efforts made my heart smile.

My diagnosis after personally researching upon returning home made me stop in my tracks. I had assumed it was something almost trivial yet in the end, without the appropriate medication or specialist care the quality of my vision (in one eye) would have deteriorated. As it is right now – at this precise moment in time, I hope, the “insult” will be contained and eliminated, the quality of vision improving with the help of prescribed medicine and patience. For it is not easy at all, not being able to see or hear very well simultaneously. I now have a much more detailed understanding of what deafblind people may personally feel, and experience. It is extremely exhausting, not being able to lip-read, let alone reading, despite feeling even more vulnerable when outside, exposed to all the elements and the vast lack of awareness in sensory loss be it sight and/or hearing.

Overall, the whole experience is proving to be a good challenge.

People sadly forget just how precious life can be so please, do look after yourselves exceptionally well and enjoy life to the max. For the rest of today, I am going to slumber, cherishing each moment with my children alongside mugs of hot chocolate and some extremely sensual chocolate cake. Hmmm mmmm indeed! Mamma mia 🙂

~ PAL

A related post; The next hurdle.

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)