Category Archives: Deaf

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.

 

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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.

 

Deaf Awareness at Gatwick? Not yet.

A week ago I flew from Gatwick airport for a holiday. Having heard of their new scheme to provide additional access support to disabled travellers, including deaf people and involving an identification ‘lanyard’ (last time I wore one I was in the girl guides and it had a whistle on the end), I decided to trial this, in the interests of research, hoping that my, admittedly low, expectations (as a result of previous experiences) would be met.

I don’t think it’s particularly helpful to only complain, I do want to see improvements made at Gatwick for all deaf travellers, so I’ve amended my original blog to provide suggestions for improvement under each observation.

On my early morning arrival, the new reception area was closed and empty. I flagged down a member of staff to unlock the area. They did this, gave me a ‘lanyard’ (which did not appear to indicate what the specific issues were), did not ask what my access needs were, was not easy to lip read and ushered me to a chair in the area marked unnecessarily with the ubiquitous wheelchair symbol. They sat behind  desk too high for many to make a phone call. I assumed the call was to someone who would provide communication support. No – another person arrived, took my case and beckoned me to follow.

~The first action should be to discover what the person needs and provide what is actually needed.

The staff member (who was not at all easy to lipread) rushed off with me following and whizzed through baggage drop and security too fast for me to collect my thoughts and prepare – I forgot I’d left my kindle in my  bag as a result so was called aside by security. This person was impatient with my request to speak slowly and clearly. Yes  it’s nice to queue jump, who doesn’t want to avoid hanging around, but that was not what I asked for or needed.

~All airport staff need to demonstrate a minimum of awareness training in relation to all access needs.

The next thing was that the person accompanying me ushered me to what I can only describe as a holding pen area, where wheelchair users and others with mobility needs were,  slung a buzzer on another lanyard over my neck and set it for a certain time. I was told to return to this area when it buzzed.

~It’s not necessary to lump all disabled and deaf people together in one area. I think a buzzer is potentially a good idea if it could show your boarding gate number and buzz an hour before the gate opens, but not to ‘herd’ us together.

The buzzer went too soon for me to get the newspaper and chocolate I was about to buy. On returning to the ‘pen’, I was corralled with another woman onto a mobility vehicle, despite my protestations I could walk to the gate. We were ushered to a priority boarding area. I’m sure this works very well for many people with mobility issues, but was not necessary for me. As a result, I had to wait longer at the boarding gate than I would have normally done and missed the chance to buy a paper or even select the free newspaper I wanted or to get the drink & chocolate I had intended to get. I asked for one and did get it – but not the one I asked for. Deaf people need access to communication and information first; we may also have other needs, but if not, we don’t need priority boarding, we need communication support, especially at check in and security.

~Staff with at least basic sign language skills should be part of each airport team; an on site interpreter should be available when requested (this may already be provided but was not offered).  These staff need to be the ones to escort deaf people through check in etc.

Thumbs up to Gatwick’s service to people with mobility needs, (although it seems they too would miss out on the free newspaper of their choice as a result of being trollied!) Thumbs down to their service to deaf and hard of hearing people. Room for improvement and one star for the attempt. I’m well aware of the challenges inherent in managing so many passengers going to so many places but the main lesson for Gatwick is to treat people as individuals and find out what they actually need first. Then ensure those needs are met.

 

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.