“Yes!” I hear you all shouting. “Yes, of course it is”. But sometimes I wonder whether people in the outside world have their doubts, or at least don’t think it’s quite so serious a disability as some others.
I’m not talking here about people in the Deaf community (capital D), who have been deaf since birth or childhood and use British Sign Language. They would sometimes say that their deafness is not a disability – they just speak a different language and otherwise can do everything a hearing person can. I can understand and applaud that stance but I don’t share it. Being an adult onset deaf person feels very different. Having a sense and then losing it is a different kettle of fish to never having had it at all, which is why I suspect that most of the followers of this blog (those of us who are adult-onset lower-case deaf) have no problems with the term disability. We’ve lost the ability to do something that we used to be able to do.
Moving on from that issue, though, what sometimes gives me pause for thought is when the outside world seems to have trouble accepting deafness as a disability.
To start with a small example (except it’s what got me thinking about this blog post) the other week I was telephoning a big Manchester theatre (using Next Generation Text) to book to see War Horse. When the choice of seat was sorted out the Box Office person said “OK…that will be £55” (an expensive seat in the front stalls because I wanted to maximise hearing chances). “Ah” I said “but then there will be a discount because of my deafness”. I’d already explained that I was deaf and I was, after all, using a deaf person’s phone service. I was told very clearly that no, there was no such discount. “Are you sure?” I persisted. “I’ve booked tickets with you several times in the past and got a discount”. But no, she was sure “unless you mean the disability discount perhaps……..” I replied that yes I did indeed mean that, trying to curb my eye rolling even though she couldn’t see it.
She would have to check with her manager. I was put on hold.
What seemed like a long time later she came back, to explain that the disability discount only applied when someone was buying two tickets, when it’s a case of buy-one-get-one-free, so that a “carer” can be present. I only wanted one ticket this time, but the manager could offer me £10 off. Hurrah! But should it have been so hard?? Surely anyone can see that being deaf at the theatre is a problem? (At the performance I caught only about 50% of the dialogue, even though there was a loop system). Surely in a theatre of all places there should be a clear policy about deafness that is fair and well-publicised? Surely, indeed, there should be an acceptance that not everyone with a disability needs a carer?
Then there are my recent attempts to research the availability of hearing loops at the venues the local University of the Third Age (U3A) use for classes. U3A is a great thing. Retired people with knowledge, skills and enthusiasm share that with other local retired people and arrange talks, lectures, sports activities, outings, art classes, you-name-it, which are then available to all group members at minimal cost, because the people doing the work are sharing their knowledge for fun and are not paid. My local U3A has over 900 members. It runs three excellent film clubs, with all films subtitled. I’ve attended lectures on several subjects and managed to hear OK (small rooms, sympathetic tutor, front row seat) even when my hearing was at its worst.
How much better, though, if more of the venues had loop systems? Backed by the organising committee I set about contacting the fifteen or so most-used venues and asking whether they had a loop.
Oh dear.
One church USED to have a loop but members of the congregation with hearing aids had complained about a persistent crackle, so they had the loop removed (not fixed, maintained or inspected……removed). Another popular venue had a loop but it wasn’t working, with no apparent enthusiasm for fixing it. At another place there was a loop but the manager admitted that she had no idea how to switch it on. Most venues either didn’t have a loop or didn’t return my emails/respond to my messages, which was worse in a way.
Several people I’ve talked to about this dispiriting survey have asked whether hearing loops are covered by disability discrimination legislation. They certainly are. UK service providers are required by the Equalities Act 2010 to take “reasonable steps” to ensure access to their venues for people with disabilities, which includes “providing auxiliary aids and services in an accessible format, such as an induction loop for customers with hearing aids”. I suspect the responses I got were so negative partly because of ignorance about the benefits of hearing loops and partly because of a view that spending around £700 for a room-sized portable hearing loop or £1,000 for a room-sized permanently installed loop is not a reasonable cost for a local organisation or small church……….except that they mostly have gone to some expense to install level access entrances and disabled access toilets, which surely must cost at least as much.
OK – final example for today. We are just back from visiting friends in Canada. We flew with KLM and I settled down on the flight out to watch a film. There were dozens on offer and I scrolled through hoping to find some with English subtitles, but without very much success. There were a few Bollywood films with English captions but not much else. I spoke to the steward, but she couldn’t help; what I saw was what there was. It’s quite pathetic isn’t it? There were (rightly) many films with subtitles in other languages, so that people could watch an English language film in German, French, Chinese and many more besides, but if KLM could do this why couldn’t they provide English for the Hard of Hearing (or even just plain old English)? There are (rightly) many options for getting help from KLM if you are travelling with another disability, why has hearing loss apparently been forgotten by the entertainment department? I’ve complained, and await a reply.
All in all, I’m left with a profound sense that part of the problem is that us deafies don’t shout loudly enough. We don’t campaign as hard as people with other disabilities. We don’t march on Parliament or chain ourselves to railings, so we don’t get as much media coverage. As a result, people, often the loveliest people, just don’t understand.
Signing off for today then, one disgruntled person willing to chain herself to a railing for a suitable hearing loss cause. Any ideas?
Image copyright: yayayoy / 123RF Stock Photo
More than a bit deaf 
Good to read people’s experiences – I think “good” is the correct word.
When I was a teacher in a secondary school in Hampshire, one day a loop sign suddenly appeared at our Reception. Being HoH and wearing two HAs – the only adult in the school like this, although there were several children with HAs – I offered to “test” the loop. I was told by the Head-teacher that they system hadn’t been set up yet and to give them a couple of weeks to test the equipment and get the people on Reception used to the equipment.
When I offered my services again a couple of weeks later, I was told that it wouldn’t be necessary to “test” the equipment as I might “embarrass” the Reception staff.
I later found out that the equipment hadn’t even been removed from the packaging.
Strangely enough, two years later, I WAS asked if I would help with the loop set up because OFSTED were due. Unfortunately, I was “busy” when they wanted me to come in on a weekend.
Hello Keith. Wasn’t sure to laugh or cry when I read this but I ended up laughing. You couldn’t make it up.
Vera
Hi Vera
As usual you are so eloquent about the issues facing those of us who are deaf. Count me in for any protests!
I regard my self as disabled. Having experienced sudden hearing loss more than 10 years ago I still have moments of profound grief – so many aspects of my life have been affected and there is so little understanding about the issues. I can only attend captioned performances at the theatre (usually not available for shows I want to see), and I need subtitles for the cinema (only a few showings and often at inconvenient times). But the issue I struggle with most is being, or feeling, excluded from conversations. My family and friends are supportive but no-one can truly understand the extent of my inability to keep up with conversations going on around me. So eventually I withdraw and then am criticised for being unsociable!
Thank you for your posts – I love knowing that there are others out there having similar experiences.
Best wishes
Jennifer
Hello Jennifer
Yes…..grief. I didn’t use that word until a counselor suggested it to me last year. “I’m hearing a lot of grief” she said, and suddenly it clicked. Yes, grief, just like if someone had died. Because a part of who I am had died.
I completely agree that feeling left out of conversations of family and friends is by far the worst thing. That and the fact that they don’t really “get it”, sometimes. People with hearing loss seem so “normal” in many ways (on a good day, anyway).
All very best wishes
Vera
Hi again Vera, Can people who are struggling to ‘accept’ if that’s the correct word, their hearing loss be referred for counselling. As you say the word grief is hardly ever used when describing hearing loss. But like any other loss, death, divorce etc. there is a fair amount of grief. Counselling is certainly something I had not contemplated or ever been suggested to me
Best wishes, Pat
Hello Pat.
I certainly found counselling helpful. I just contacted a local service and paid for it myself but there might be a number of other options. First one is that some NHS Trusts still employ Hearing Therapists, that offer a similar sort of service. (Probably most Trusts don’t still have them, but you never know). Second option is via your GP Practice. Mine refers people to counselling services and although this will not be with people who are specifically training in counselling on hearing loss they will still probably be useful. Third option is your local Social Services Disability Section. Mine once asked me if I might find counselling useful. If I’d said yes at that time they said they could have referred me to a local general counselling service.
Another option, probably the best option actually, is to contact Hearing Link. They run a variety of short courses on coming to terms with hearing loss and I’ve heard that they are excellent. Check their website.
I think I feel a blog post coming on with all of this…..what we need and who is providing it.
Best of luck.
Vera
Hello Vera
For those of us who used to hear, deafness (in varying degrees) has definitely caused a loss of one of the precious senses.
It seems, judging from comments made by those with hearing, the word DISABILITY doesn’t have deafness as an accepted condition within its definition.
Hence the comments ” Oh you don’t look deaf”, “You seem to manage very well with your hearing”, “It’s not bad though, is it” ” You can hear quite a lot really” and so on………
Perhaps a plaster cast wrapped around each ear, or a big Elastoplast somehow fixed to the ear and hair (ouch!) would do the trick?
A few years ago Hearing Link had success with hearing loop awareness in Eastbourne. In my county town in a different part of the country, I took part as a volunteer, to find out which Loops were available in local Banks, Building Societies, Doctor Surgeries etc. It appeared many had ‘signed up’ to the Disability Discrimination Act to provide loops.
I found loops which were not switched on; were not charged daily (if at all); A new Loop in its box in a cupboard. I was informed by a counter assistant they hadn’t been asked about the loop before. Not all companies give staff training to update and check the portable loop and/or counter loop. Several assistants didn’t know how to operate them. To be fair, I found helpful people who wanted to learn and assist and where the loops worked, I thanked the staff.
An audiologist needs to activate and check the T loop/function is working on a hearing aid. It takes courage and determination to get access to a loop system and once again a hearing-disabled person has to go through the process of asking questions about a loop facility, explaining they have hearing difficulties etc etc. It’s tiring! So the question arises……Do you want to be the person in the queue holding up other people yet again?
Well, yes…….it can help other people also, but there are only so many times………….
Let’s take your comment “but should it have been so hard?” as an awareness slogan.
Sally
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Hello Sally.
I love your visual image of the big plaster cast for the ears. THEN they’d take notice.
Hearing Link do lots of excellent work. I applied to be a volunteer for them once, but it was in a period when they were changing their arrangements and by the time, many months later, that they could take on new people I’d got too busy doing other things. I’d read that they had had people checking loop systems in their local area. What an excellent thing to do.
Many thanks for your comment.
Vera
How very true everything you have said. I complain when I have a chance but getting companies email addresses is not always easy. They always give a telephone number!!👎
And how infuriating is that……..!!**??
Next Generation Text is good for that situation, although I always prefer to write something, so that I can refer to it later if I need to. It should be absolutely standard practice that all big companies allow you to contact them by email, or post for that matter.
Do you all know that NGT conversations can be saved on your computer
I didn’t know that! But it explains it clearly on the online instructions. How very handy, especially when someone has given you long instructions about what to do next……..
Hi Vera
If, when we do shout and it seems we are not heard makes one wonder who is it that is truly deaf? Is the hearing community deaf to the needs of others, especially those of us who are deaf/hoh?
Apart from those of us deaf from birth who have never known something an lost it and may not consider themselves disabled, I would sit on the side with those who consider themselves disabled for the reason you quote.
I have something, I’ve lost part or some of it and it no longer works as well as it once did, therefore I am less able in regard to my ability to hear (even with hearing aids) than I once was.
Therefore I am disabled. I will become more so if I’m spared to live to an older age.
Another thought is that deafness has always been considered by many to be a “Cinderella” handicap. It can’t be seen by the many unless they see our hearing aids or cochlear implants as these act as some kind of flag to the uninitiated that we are deaf.
On a plus side, my local Tesco Express has installed loop systems at the checkouts checkouts and they work!
I went to a different health centre this morning for a chiropody appointment and they too have a loop that works, as does the one in my usual health centre and the one in main post office in town.
Small victories?
Ian
Hello Ian.
Great to hear from you again. I love your thoughts about which us are truly “deaf” when we shout and are not heard. And your list of small victories are very heartening. By coincidence, I’ve just returned from a very heartening conversation at Kwik Fit (slow flat……). The young man attending to the car looked curiously at my implant/speech processor (and perhaps at the hearing aid in the other ear) and then did everything right. He looked at me, he spoke at a reasonable pace, he didn’t gabble in car-mechanic-ese, and he was helpfulness personified. It sent me home smiling instead of gnashing my teeth….and he fixed the tyre for 25 quid. Why can’t all life be that easy???
Turns out his gran is deaf so he’s been taught what to do.
Vera
Hi Vera
if when we do shout are we heard, so who are those who are truly “deaf”? Are the hearing community deaf to the needs of those of us who are deaf/hoh?
Hi Vera, these are my thoughts exactly. I am heartily fed up with having to fight for everything so have near enough given up so good for you to be determined about the discount in the theatre.
I had a similar experience with in flight films a few years ago when on a long haul flight and gave up in the end. There is a long topic on trip advisor about this subject, some remarks show how ignorant people can be about sub titles. When reading info on an airline website regarding what they offer for hard of hearing it can all be very vague and sounds like a lot of hard work for the hard of hearing person who is travelling. I gather a lot of people download films onto their iPads to watch during a flight.
I have given up going to the theatre, I now go to sub titled films, no problems so far thankfully. Keep up the good work, you are very determined and you name is well known now
Pat
Hello Pat. Good to hear from you. It IS hard work, isn’t it, when it really shouldn’t be. Vera.
Oh how I agree wholeheartedly! Happy to chain myself to railings with you! 😀
Wonderful. A sister in protest!