Category Archives: Thoughts

A Day for BSL

Many academics and educationalists, as well as lead organisations have much to say and much information on the topic of deaf children and their communication needs. My take is as a lay person who has been through ‘the system’, having become almost completely deaf at the age of two in 1953 from the high dosage of streptomycin given me to save my life when I contacted viral encephalitis. There’s a whole story there – one day I’ll write it all down, but not just yet.

Yesterday two momentous events highlighted the importance of communication for deaf people and made me feel I needed to write something.

The Silent Child won the Oscar for best short live film. For hearing people, the message was stark. Deny children who are born deaf (or become deaf before acquiring speech) and you deny their rights – to language and to their place in family life. For too many deaf people it illustrated the isolation they felt growing up, often leading to frustration, depression and despair. Some had flashbacks, bad dreams and experienced the surfacing of agonising memories.

On the same day deaf people were celebrating that marvellous Oscar, a debate was held on the inclusion of British Sign Language in the national curriculum, following a petition. The minister’s response was disappointingly negative and the debate was held in Westminster Hall, not the House of Commons. That reminded me of something someone said on twitter about The Silent Child – that it was ‘niche’. Pretty dismissive comment, I thought, and replied politely challenging that term.

Many efforts are (and have historically been) made to ‘fix’ deaf children so they can hear and speak. I was going to talk about my own experiences, but so many others I know have had the same or similar, it’s probably more important to say a few things in general about the effects on a child of this ‘fixing’. Imagine spending weeks, months, years being taught to lipread, to hear with aids and to say, for example, the word ‘apple’. Does that enable the deaf child to know what an apple is; where it comes from; that there are varieties; to understand the part an apple plays in the story of Snow White? Not having sign language means educational achievement is skewed from day one.

How about the psychological and social effects? Hearing people in the majority of situations begin chatting to their babies the moment they are born. There are many brilliant hearing parents who make every effort to give their deaf baby visual information as well, and some learn sign too. This gives the child every opportunity to find friends they can communicate with and to feel included by their own family.
Too many, influenced by medical professionals, by their families, by their own fear of being isolated from their child, by the mistaken conviction that speech and hearing is the holy grail, seek only audio and surgical solutions. To me it seems perverse to do this, when the brain of a baby and young child can learn so much from visual input, whether deaf or not. Baby sign classes are very popular; makaton (a sign system, not a language) can be seen on popular children’s television. Yet sign is too often discouraged for the very people who need it as their first language. Growing up, finding your own identity and place in the world is tough enough without having to struggle to lipread all the time. Whether or not you have hearing aids or cochlear implants (not a miracle solution, rather an advanced hearing aid) having other means to communicate can make life less stressful, less exhausting, and more fun too.

This isn’t an polemic anti hearing aids, implants, radio aids, induction loops, alerting devices, captions, lip reading classes or hearing dogs. Those are all here to stay, and benefit many people. It’s just a fervent wish that all these things weren’t seen as reasons not to have sign language too.

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Philistinism is here, watch out ‘public’ libraries

I began borrowing 8 books a week – 4 from from Boots Lending Library and 4 from our local public library at the age of four. As a profoundly deaf person, books have been – and are – my window on the world, my escape, my salvation, my comfort and my teachers.

My mother had a friend who had what I thought was a dream job managing county library services to people needing audiobooks, needing home visiting and other ‘special’ services. Aged 11, having ‘classified’ my own books, this friend asked me what I wanted to be when I grew up. With no hesitation, I answered. “I want your job.” Reader, some 30 years later, I got that job, via several other public library positions, all of which I revelled in. Earning (albeit not riches) doing what I loved – what a privilege.

Before the first stirrings of monitoring public services as if they were businesses and regarding them as soft options for downgrades and cuts, the libraries I worked in were safe havens where nobody queried what you were reading, where you could find all human knowledge and imagination free of charge to take home. What a privilege and delight; what development opportunities; what a world.

That people would seek to damage it in the way that is now a terrifying norm was far beyond my comprehension in those days of my pleasure in demonstrating Ranganathan’s Five Laws of Library Science:
1. Books are for use.
2. Every reader his / her book.
3. Every book its reader.
4. Save the time of the reader.
5. The library is a growing organism.

I’m sad, I’m cross, I’m upset at the sheer philistinism of today’s library authorities. “A comprehensive service”? Hah.

A first step – what came after my Deafision

A first step – what came after my Deafision

Since I last blogged, I’ve tried wearing one hearing aid with the sound set low just on occasions when I need to moderate my voice or try to hear my granddaughters. This week began with yet another bad reaction to even this tiny input, as did last week. Every time this happens, it leaves me like a limp rag for the next two days – interfering unacceptably with how I want to live.

I wrote in my Deafision blog:

“Cochlear implants are increasingly provided, is this for me? I feel very resistant, are they really more for hearing people as above? Do I value the possibility of increased sound enough to undergo an operation and thereafter have a foreign body inside my head with the other bit stuck on the outside? Remember, I said it’s just my family’s voices I want to hear, few other sounds matter much to me. Not all are successful and I abhor those emotive switch on videos.”

Since then, I’ve realised this does need to be my next step. I’ve listened to good friends who have CIs, I’ve done my research pretty thoroughly, talked to my family and spent many hours turning the issue over in my mind and I know I’m potentially what’s termed “a good candidate” for one. My view has shifted from once being totally anti (for myself – I’ve never judged other people’s choices) to reluctantly conceding it might one day be right for me to now accepting that that day has arrived. I’m not concerned with how anybody else may view my choice; we all have our particular reasons and situations for making our life choices.

For those who think I should “teach my family to sign”, I’d say:

“Be realistic. My family are all hearing, they don’t sign enough to keep it up for my benefit. I did not meet other deaf people or encounter sign language until I was 17, after being brought up completely orally, lipreading and attending mainstream schools. My first language is English, BSL is my second language and however much I love it, however much I prefer to use it and to communicate with my deaf friends and acquaintances, I am a pragmatic person who deals with the world around her as it is, not how I wish it was.”

Yes, I could change my mind, or I may not be accepted for one, but those are next steps. My first step is an CI information group meeting in November.

I feel a mix of trepidation and anticipation. It’s a new adventure for me.

 

My ‘Deafision’

image‘These are the earrings I mention in my last paragraph – read on to find out why.

My ‘Deafision’

After weeks of increased intrusive tinnitus on both sides, with vertigo, nausea and fatigue, triggered every single time I wore my hearing aids for more than an hour, I’ve been thinking more often about making a ‘Deafision’. (My word for a decision on choices linked to being deaf.) These words are very personal to me; I’m not offering any advice, just indulging myself in sharing my thoughts here.

What do my hearing aids give me?

Some sounds, but not sound recognition or directional information, and only inside the room I am in. Whether I pick the sound up or not is variable.

Some speech, if from someone facing me in the right light within a couple of feet and speaking clearly, to boost lipreading, signing, or captions/speech to text a little. Background noise at any level through the aids makes speech sound worse than useless. If outside, this includes wind, traffic, crowd noise.

Some sound with television programmes if I use an induction loop, but only if I also use subtitles. Loops in other places are not enough for me without captions.

More tendency to itchy ears and ear infections.

Things needing cleaning & maintenance, regular battery, tube & mould changes.

Trips to audiology where deaf awareness and communication skills are often in short supply.

Annoying loud feedback when wearing a hat or hood.

So, given the above, why do I wear them at all?

To hear something of the voices of my family – most especially my 2 & 10 year old granddaughters, who are hearing in hearing families so not exposed enough to sign to be able to use it to communicate with me. It’s hard enough to lipread them. If only it were taught in schools and if only I’d been given access to it growing up (in the 50s/60s) so my children had grown up bilingual. I love my family dearly; they all speak clearly enough so I can lipread them with ease and my daughters can sign a little, but how lovely it would be if they could all sign. I’ve become accustomed (not at all resentfully but peacefully with understanding) and resigned to not being part of family group conversations.

To hear some speech & music sounds in television/DVDs/theatre performances – subtitles or sign still needed for understanding.

To hear car engine sounds when driving, but this is only from long habit, probably not essential.

I can’t honestly think of any other sounds I’m desperate to hear. Not the birds singing, or the wind rustling, or even music. Perhaps the roar of the ocean, but while I can see the sea daily from my window, I’m happy it’s a strong visual presence in my life, if not a noisy one. Sound, to me, is a functional thing, not the thing of joy it clearly is to many.

What about other outside sounds?

I manage fine out and about in my small town where I live (and where I grew up). All the staff in shops, restaurants & pubs know how to communicate with me on the basic level necessary. I have had hearing dogs for over 30 years, a clear enough sign that I am deaf. (I will never wear a badge!) I’ve got great peripheral vision and observational skill. I’m a confident person who will ask others to face me, speak clearly etc without embarrassment. Buses, trains & planes are more likely these days to have visual signs as well as verbal, so, even though I always have an underlying nervousness in case of unannounced change or emergency, I can travel confidently and will ask the person next to me if I have to. Yes, I do sometimes have to give an impromptu deaf awareness lesson, but hopefully that will help the recipient to communicate better with the next deaf person they encounter.

I’m part retired and interpreters are always provided for the few days a month part time work I do. I’m happier nowadays to be more of a supportive observer than an active participant in society and community, with no FOMO (Fear of Missing Out!) troubling me. I need captions or communication support even when wearing hearing aids, so not wearing them makes very little difference to my activities. Text, FaceTime, email, social media, etc are all available to me to keep in touch with many friends.

My conclusions?

I’ve often thought that hearing aids are really for hearing people, so they can believe they don’t have to make any effort to communicate with the wearer. Everyone who is severely or profoundly deaf who wears them knows they are nowhere near perfect solutions, or solutions at all.

Cochlear implants are increasingly provided, is this for me? I feel very resistant, are they really more for hearing people as above? Do I value the possibility of increased sound enough to undergo an operation and thereafter have a foreign body inside my head with the other bit stuck on the outside? Remember, I said it’s just my family’s voices I want to hear, few other sounds matter much to me. Not all are successful and I abhor those emotive switch on videos.

What will I do?

My ‘Deafision’ is – for as often as possible (grandma days will continue to be the exception) – to go hearing aid free with only earrings adorning my ears.
I love wearing them and have a vast collection. My current favourites are my book ones – see above. If you know me, you will know just how appropriate they are. Thank you to my lovely man for giving them – and so much else – to me.