My brother

It’s a week since my brother died. I feel as if a piece of my heart has been torn out. This last week has been full of arrangements and sorrow. Next week is the funeral – it’s billed as a celebration of his life but he was just 61, too young, too much living to do. My mother at 89 says she should have gone first – it’s hard to disagree with her. Poignantly, my younger daughter is expecting her first baby next January, a year after the diagnosis was made of the virulent and untreatable cancer that took my brother’s life away from us. On the day he died she felt the baby kick for the first time. I’m a cynical old thing but that was a precious coincidence for me. I have been so touched by the kindness of friends, I wasn’t sure about facebooking this but it turned out to be the right thing to put the picture and the words up that reflected my mood. So many comments from lovely friends.

I’ve planned my talk and poems for next Tuesday; I’m going to be a pall bearer. What else can I do to salve this ache? Time will soften it, memories will heal – but not yet, and so my tears fall…

Advertisements

This could be me

This could be me

This could be me

When I saw this photo on twitter, physical memories threatened to overwhelm me of the trips to Grays Inn Road with my mother that seemed to take up our whole lives in the years before I began school. Scratchy train seats; station smells; the cold green stuff I was sure was icecream that was pumped into my ears to make hearing aid moulds; the tears I wept copiously when instructed to LISTEN when I could not make my ears do it. But afterwards, my mother always took me first to feed the feathery, nibbly, jostly pigeons in Trafalgar Square, then to the cartoon cinema on Victoria station on our way home.

What are the non-Deaf? (Warning – heavily satirical)

What are non-Deaf people?
These unfortunate people can only use their ears, often instead of their eyes, to pick up many different signals from around them and decode them. 
Many of these signals, called “sounds” or “noises”, are of no consequence, including many of the ones made by their mouths and throats. These are called “voice” or “words” or “talking” and are used to convey messages to each other. Different tones may be used to add meaning to these messages but often the meanings are lost because non-deaf people are busy deciding what words will come out of their mouths before the non-Deaf talking to them have finished conveying their message. 
Other sounds are used to warn non-Deaf people of things that are happening, because they don’t pay enough attention to what is going on around them and don’t use enough visual signals like flashing lights or vibrating alarms. 
Most non-Deaf people don’t understand sign language and it’s very sad for them because they miss out on so much of the beauty of sign language and Deaf culture. It is very important for people born non-Deaf to be diagnosed early and learn to sign as soon as possible so they can understand Deaf people. Once they can sign, they can go to a school with Deaf people and other people who can sign and may even manage to learn at the same pace and perhaps get some kind of gainful employment once they leave school. 
Another option, which can make learning sign easier by removing the conflicting effects of sound, is to remove the hearing nerves altogether. This is major surgery but the effects can be miraculous and allow non-Deaf people access to all the benefits those born Deaf have. 

Sign or Speech – why the conflict?

Last night, I contributed a couple of comments to a long string of posts on a social media platform for deaf people and – yet again – felt sad at the apparent antagonism of those who prefer to use English (whether spoken, lipread or read) against British Sign Language. There seems to be a perception that the needs of BSL users currently trumps those of people who use English. I don’t think there is any evidence for this, personally. Provision of captions & induction loops, etc far outstrips provision of BSL on screen & in public spaces. Deaf people who are bilingual or have English as their first language (as I do) have many more options when communicating than those who use BSL alone, even with the frustration and exhaustion that communication with unaware people can bring. One of those advantages is being able to share their views in text on social media. I find it distressing to read extreme views that show little acceptance of both the differences and similarities in the barriers we all face. Poor access to language & education for those who were born deaf or became deaf before speaking does not result in lack of intelligence but in lack of the knowledge we all need to function in society. Not having BSL as an option for communication does not result in being somehow not really deaf or in not having communication problems. When face to face, most of us get by as best we can without overtly insulting each other, but the anonymity of social media gives licence to make provocative & antagonistic statements. This is nothing new, of course, we are all familiar with trolling behaviour on all platforms, but it would be good if it was not between those who share many common difficulties.

Link

There has been coverage of cochlear implants for many years; it’s a polarising issue & my stance has been one of disquiet at the idea combined with a belief in freedom of choice – typically woolly liberal, I guess. But a friend recently posted some information about people who had implants some years ago who now regret it; at the same time I have two friends happy with theirs. Personally I would never have one – except if I lost my sight as that seems to me a reasonable thing to do to acquire at least some sensory input. But for those unhappy with the idea and expressing my own views about 12 years ago, on seeing the CI operation, here is my poem:

the reticulate chain link is inserted into the bloodied channel uncovered by the scalpel                           that carved a vicious gouge out of the delicately made skIn behind her ear

eyes sealed with tape, unknowing the assault or the outcomes on waking, save what she’s been told: you’ll be able to hear the birds, dear and cross the road more safely and maybe you’ll even be able to TALK PROPERLY.

well here we are, let’s pop this in CAN YOU HEAR ME SWEETIE? let me adjust it, there we are, that’s better isn’t it? NO? A buzzing noise? It hurts? WELL YOU DO NEED TO ADJUST OF COURSE. COME BACK IN A FEW MONTHS TIME ABD WE’LL CHECK IT AGAIN, all right dear?

she leaves, to grow her hair long to cover the scar and avoid the netball court and pop concert scuffles and wonder who she really is and what they meant when they told her YOU WILL BE ONE OF US NOW

A Turkish Odyssey: the year I was 60

What makes the best holiday for a deaf woman who needs a rest? Definitely my Turkish gulet trip with sailing, walking and swimming and easy communication!

During my 60th year, I decided I would treat myself to three different trips away. What to do?

Barcelona for a long weekend with my daughters – lovely company and conversation, beautiful buildings, scrummy food – but it was a city break and I love the countryside.

New Forest cottage with my husband – great company again, very relaxing and gorgeous countryside – but I wanted to go abroad too.

Something just for me? A week with two interpreter friends staying on a traditional Turkish gulet and walking around the Aegean coast and islands with the company Walking Women – now that sounds just right.

I travelled on the Turkish gulet, East meets West, with Meridian travel and this is the holiday I had:

No housework or cooking with evening drinks served on request – blissful.

Sumptuous meals on board with local produce and freshly caught fish – yummy.

Wonderful long walks among fields of spring flowers, peaceful shaded woods, dramatic hills and valleys by seas of turquoise and viridian – exhilarating.

Turtles and tortoises, snakes, crickets, praying mantises, butterflies, goats, turkeys (!) and storks nesting on mosques – natural wonders.

Excursions to Byzantine and Roman ruins, including the baths where Cleopatra frolicked with Mark Antony – fascinating.

Mud bath, river trip (on the river where they filmed the African Queen with Bogart & Hepburn) and a session in a Turkish hammam – relaxing.

Sunrises, sunsets, moonrises, moonsets over the sea – amazing.

image

But – I was the only deaf woman there and was patronised, ignored and “studied” like some weird zoo creature by some of the hearing women. Not easy to use my usual tactic of walking away on a boat, not having any miraculous abilities. The lovely memories were mixed up with not so lovely ones. What to do?

The answer was obvious – the only way to make this holiday total perfection for me was to organise it with only women who could sign. In 2012 the first Sarah’s Signing Sail was arranged, a second trip followed the year after and next May 2014 will be the third – will it be the last?

It’s not easy to describe the effect this holiday has on the women who come but they describe it to me in words and phrases like “bliss” “total relaxation” “a real escape” “lovely company” “my best holiday ever” “can I come again” or just “wow”. For me, it is all of these and more.

The flight from Gatwick to Dalaman is just over four hours and the minibus that takes us to Fethiye to the gulet is about two hours more – all in all less time than it takes to travel between Sussex and Cumbria.

Fethiye harbour is full of boats of all sizes and ours is very easy to spot, with its brilliant yellow sails and awnings.

image

Anne (from Wigan) co-owns the boat with Adil (from Turkey) and they have an all male crew of first mate, chef and cabin boy. Before the first Signing Sail, several emails went between Anne and me to explain how communication would work, how the deaf women coming would be alerted in case of alarm (no there is no need for a hearing interpreter to share with each deaf woman – and there were only three interpreters anyway). There was still some apprehension, but all the concerns had disappeared by the second day and communication flowed smoothly. The crew looked after us with care and courtesy, learnt how to get our attention and soon began to try the odd sign with us. Anne is a delightful hostess and led all the walks with knowledge and care, she worked so hard to make sure we would all have a good time.

The cabins are comfortable and all ensuite and the deck has all you need for relaxation in or out of the sun.

image

Yes, there are holidays arranged for deaf people but this one is for women only. There is something very special about the combination of stress free communication, and being completely free of work, domestic, social and caring responsibilities. That fatigue from using up our “communication energy” in our lives melts away and the memories are unforgettable.

If you fancy joining us next May, I can put you in touch with Anne – email me on srhplfrth@gmail.com

More schooldays

Thinking back to when I found myself the only deaf girl in a school of 500 hearing girls, I can feel my heart beating fast and my palms beginning to sweat – the nightmares I had for years were of  myself a bare inch high surrounded by huge black and menacing figures were undoubtedly a reaction to that sense of being small, alone and isolated in this place of strange noises that meant nothing to me, of hordes of chattering cheerful young women, of unintelligible information about subjects at first completely unfamiliar to me.

It would not be true to say these feelings were continuous and, by dint of copious reading round subjects, of straining to lipread the teachers and a hefty dose of bloody mindedness, I survived and managed to achieve some O and A Levels. In the sixth form, I found schooldays easier to cope with, largely due to the understanding of two teachers who always did what I needed to ensure did understood their lessons. I guess by then, too, I had perfected my thick skin over the pain and my classmates seemed more willing to communicate effectively with me.

Do I wish I had gone to a ‘special’ school? Emotionally and socially – yes. Educationally? Given the choice in those days of education for deaf children of having to leave home or be educated minimally with low expectations – no. My mother did not want me to go to boarding school and on balance, I am thankful, although it took me several years to discover the utter pleasure of meeting other deaf people and making lifelong friendships, as well as learning BSL and marvelling at the beauty, the economy and creativity of sign language.