Saturday, July 25, 2009

A Clinic for the Late Deafened

This weekend I've been reading Maeve Binchy's new book Heart and Soul about a clinic in Dublin set up to help those with cardiac failure. Immediately I started dreaming about a similar setup for people newly diagnosed with hearing loss.

Here are some quotes from the book that I've altered by inserting hearing loss where the author was speaking of cardiac failure:
"What it [the community] needs is a good positive system set up, something that will go on helping people to make the most of their lives after the initial setback of hearing loss."
"Why do you call it hearing loss?" "Because that's what their ears are doing: failing to work at the optimum levels."
From my own experience I know that being diagnosed with a permanent hearing loss is a blow to one's psyche, even if there was a suspicion that something might be wrong. Understanding one's hearing loss and explaining it to friends and family is also difficult. It's not as though one has lost the ability to hear completely! But realizing one doesn't hear at an "optimum level" as Binchy put it does have an impact on one's life. It takes a while to sort out the ramifications.

In Binchy's novel, the patients who come to the clinic are helped tremendously through the reassurance of the staff that their medical condition can be managed and they can live full lives. Certainly there were changes to be made and life did not go on as before but life wasn't over either.

Here's a few more quotes that I have changed slightly to illustrate the point:
"She had seen trust and hope among patients who felt that they were learning to manage their hearing loss."
"We have found that those who come from a positive background, from a home where people really believe they will adjust, do adjust."
The staff of Binchy's clinic help their patients through educational programs and regular checkups to monitor their progress. Wouldn't it be wonderful if there were a place like that

  • where one could be shown many different types of hearing aids and that frequent adjustments to the aids one selects would simply be part of the process of becoming accustomed to wearing them.

  • where one could go for assistance with learning to lipread, learning what accomodations are available and the best way to ask for them, and learning some basic signs and finger spelling.

  • where one could meet others who had already been through the adjustment process and be reassured by them that a diagnosis of hearing loss isn't a prison sentence to a life of lonely gloom.

Have any of you ever experienced such a place? I met some audiologists once from a big city hospital that seemed to offer wonderful services to their patients. I vaguely remember they even had a room where you could have your hearing aids adjusted to hear music better. It sounded fantastic but also out of my reach as I didn't live in that city. Sigh.

My local audiologist offers just a basic diagnosis and fitting service. After receiving my new aids, it was pretty much up to me to cope with the adjustment process on my own. It seems as if there could be a better way. If it can be done for heart patients, why not for those with hearing loss? Am I only dreaming?

One of my readers provided two examples of organizations offering these services in the comments section. Thanks, Mog! The first is an organization in the UK called Hearing Concern. The second is an organization in Canada called Canadian Hearing Society.

Has anyone had any experience with these two organizations? Do you know of any more examples?

Further Updates
Here's an example from Ms. Toast Burner: Island Deaf & Hard of Hearing Centre (Vancouver Island) and from Jacki: Deaf and Hard of Hearing Services (Saskatchewan). Jonathon mentioned the Canadian Hard of Hearing Association as a good resource.

Canada seems to be ahead of the United States in this area. Has anyone found a helpful clinic in the US?


kim said...

I loved this post. I too have dreamed of an accepting, supportive atmosphere for the late-deafened. We face different issues than those who were born deaf. For one thing we weren't born this way so must adjust to a new way of living as adults. This is a difficult task after one has chosen a career where communication and hearing is so important.

The only thing I have found anywhere near as supportive as what you're describing is through my associations with others like me-- other deaf people of all walks of life.

I find those who went deaf early can be particularly helpful in shedding perspective on hearing loss. Additionally when I meet someone new to hearing loss and struggling, it reminds me how far I've come.

Wonderful post! :-)

suddensilence said...

Oh, I totally agree! I've never had any kind of help in dealing with my hearing loss. Audiologists give hearing tests and fit hearing aids; even when I was diagnosed profoundly deaf in both ears, I didn't receive any help other than a diagnosis.

It was up to me to do research and find out my state offered a free TTY or CapTel phone (and what that even WAS), what accommodations might help me (bed shaker for the alarm, for instance). If it wasn't for the internet, I would have been totally lost.

A face to face support group wouldn't have appealed to me, unless it was captioned with CART. But even a xeroxed sheet of paper listing websites and sources of help, handed to me after my hearing test was over, would have been welcomed.

It still surprises me that this isn't a part of the audiologist's job, but I guess not. It was the hardest life adjustment I had to make, and I was on my own!

~ Wendi

Mog said...

When I was diagnosed with hearing loss I was supposed to be referred for counselling as well. Though this never happened as there wasnt a hearing therapist in the area. This was in the UK. There's also a UK organisation called LINK
They provide short courses and rehab for late deafened people. I was never able to go on one butmy mum did and found it very useful.

In this area The Canadian Hearing Society provides similar things. I don't know if there is such a job as a hearing therapist in Canada.

SpeakUp Librarian said...

Thanks, Kim. Perhaps we'll see something like this in our lifetimes. It doesn't hurt to dream.

SpeakUp Librarian said...

Hi Wendi,
Like you, the internet helped me a great deal in finding the information I needed. For me it was a lifeline. But I wonder about those who may not be as motivated as I was and those who lack the search skills or online access. A clinic like this could be a resource for them.
I wonder if audiologists get any training in this area at all?

SpeakUp Librarian said...

Thanks for that link, Mog. I'm going to edit my blog post to include that information as not everyone reads comments. The Hearing Concern organization is an excellent example of what I was dreaming about.

ms toast burner said...

Great post, Sarah. :-)

I have received a lot of support at a local organization:
Island Deaf & Hard of Hearing Centre

They have an 'aural rehabilitation' program that was particularly helpful for me in coming to terms with accepting my hearing loss and realising that I really do need to use my hearing aids. We went over how to make the most of them, communication strategies, lip-reading, etc.

The woman who run this program is an audiologist who saw that many HoH people are, like you experienced, fitted and let to fend for themselves. She told me it is a very neglected area in the hearing loss / audiology industry.

The IDHHC also have other programs for people seeking employment, assistive listening devices and other stuff... I should really look into some of them more.

I'm not sure how small or big of a place you live in, Sarah but if you can't find what you need, then I bet there are others who can't either. You're an intelligent, insightful, well-read, organized woman with an important dream... why not start such an organization? or start a local chapter of a national org?

There must be something in Chicago though... if that's near where you live?

Excellent post...

SpeakUp Librarian said...

Thanks for your example, Ms. Toast Burner. I agree with your audiologist that it's a "very neglected area in the hearing loss / audiology industry". Glad that you've found such a terrific place in your area!

Jacki said...

I've been hard of hearing since birth so I can't speak specifically to the late-deafened experience, but Saskatchewan Deaf and Hard of Hearing Services ( is a pretty good resource (also in Canada). Mostly, I use them for CNS (a CART alternative) and I met with a worker there years ago about post-secondary issues. They also offer employment assistance. They have a fairly strong community with social activities, etc. They do advocate very strongly for ASL among deaf people. According to their website they are now looking into the possibility of offering lip reading classes, but they have never done so before.

Glenice said...

Wonderful post! I also felt the need to know others in my situation. Over the years there have been improvements, so maybe we are moving closer to the dream!

MM said...

Sadly LINK was the sole set up that was dedicated to those with acquired deafness in the UK, they merged with Hearing Concern for financial reasons. I am unsure HC has the same dedication as LINK has but....

I Lobbied for LINK to be a national system alongside the RNID/BDA of Britain but few of these groups recognize how serious issues are for acquired deaf, we are still poor and neglected relations of sign users and the HoH.

That is no releflection on those sectors other than no matter what they do they cannot see our needs, let alone meet them. We are still told to approach groups and systems that are not suitable for us.

On the positive side (!) we are amongst the most strident and able of campaigners who get things moving, unfortunately for others not us and we are placed at signing exec levels too, we are jack of all trades, identified by none. We are best placed I suppose to see the issues from BOTH sides of the fence...

We don't get much help ourselves, seems we thrive on supporting others ! no deafhood, and no HI-hood either...

Jonathan said...

What you're talking about also makes me think of some of the services that the Canadian Hard of Hearing Association (CHHA) provide.

Some cities have more active branches than others. In these active branches, there are speechreading classes, workshops about various things related to being Hard of Hearing or sometimes even about a topic that many people in the branch is interested in so that they can all attend and use a shared FM system, etc.

MM said...

The thing about the UK 'LINK' service, was it was the SOLE place in the southern UK that did so, there was no other set up at all, so if you acquired your deafness anywhere else it would be many odds-on you woul dget no support at all. You 'Might' get suggested to LINK if the local area is aware it it existed (Most didn't), but the ques were horrendous, and time lost also negated what LINK could provide IF you got there. The general approach was "Go to a deaf club/sign class/lip-reading class' that was it. It is estimated 78% of acquired deaf just couldn't make it. Lip-reading only worked IF you had residual hearing, sign language, was very hit and miss because you had to gain enough confidence to ATTEND a class first of all, that put off many too. Deaf clubs were a lottery. The deaf there mostly signed so, unless you learnt it you didn't get too far there either,and again social aspects made things very difficult for AD's. Classes did not have teachers au fait with the trauma of losing all your hearing, one class I attended in LR told 5 people there was nothing at all they could do for them until they "Got a grip on things !" I walked out in anger and never went back to them.

SpeakUp Librarian said...

Thanks, everyone for your comments. It seems as though Canada is the most helpful country at providing services to the late deafened.

Thanks for and sharing your personal experience with Link, MM. Getting the brush off is worse than having no help available.

I appreciate all your compliments, Ms. Toast Burner, but I think something like this should be an offshoot of an audiologist. The people with training and credentials. I'd be happy to get involved in a support capacity.

funnyoldlife said...

I worked for Hearing Concern until they merged with LINK. They had the will to help HOH but not the means.

Lipreading classes are shutting down all over the UK, I did a UK survey and people were leaving in droves because fees had gone up so much - the government reclassified lipreading as a language skill and therefore chargeable. It's laughable.

MM, as a lipreading teacher myself, I am shocked that you were told to 'get a grip' - you should report that teacher to ATLA. I would've argued with her until she apologised for that disgusting comment.