The Victory of An Impatient Patient with Hearing Loss

The fruits of advocacy are both bitter and sweet.  You win some, you lose some.

Sometimes you advocate your little heart out (I need captioning!  The music’s too loud!), but nothing changes.  The winds of change hardly stir the leaves.   It can drive an  impatient advocate crazy.

Then one day, a door shuts in your face because there’s no communication access and you have no choice but to speak your mind – and voilà!  The problem is fixed so promptly that you think that’s it? That’s all I have to do – just say ‘fix this’ and it’s done?   Instant gratification –  what the impatient person with hearing loss loves!

But there’s usually a lot more to it – our fight for meaningful accessibility improvements are carried out in sustained campaigns, such as the fabulous crusades being conducted by CCAC (Captioning Access), Let’s Loop America and Stop Hearing Loss Bullying.   But sometimes our personal advocacy, perhaps just a simple request, is so timely or urgent that it sparks an instant flame.

Last week, Peter Stelmacovich, a renowned deafened audiologist, was denied seating in a Toronto restaurant because of his hearing dog.  This is not an unusual occurrence, according to other hearing dog owners, but this time they picked the wrong guy to mess with.  Peter not only knew the law and his rights, he promptly contacted one of the city’s major newspapers, which gleefully gave the issue major coverage.  The restaurant has now apologized, is re-training its staff, and is posting window signs, ‘Service Dogs Welcome’.  Ah, the sweet smell of success.

Today I had a similar sweet moment, although on a smaller scale and over a longer time frame, when I saw what may have been the results of my personal advocacy.  In my blog of November of 2011, I wrote about communication challenges with an MRI technologist who was unfamiliar with accessibility protocols for patients with hearing loss.  Today I was back at the same hospital for another MRI, this time for a checkup on a congenital aneurysm.  I steeled myself for the usual communication barriers, and was rewarded with a receptionist whose voice was a mere half-notch above a whisper.  When I told her I had hearing loss, she simply stopped talking to me.

The technologist called me in – I figured it was me she was calling because nobody else in the waiting room  got up – and darned if it wasn’t the same technologist of two years ago!  She didn’t remember me, so I guess our communication struggles were not as stressful for her as they were for me; my MRI was probably  just one of thousands she conducts each year.

To my surprise, both she and the system had evolved.  When I self-identified as having hearing loss, she engaged me in what can only be described as an accessible communication process.  We sat in a private room to complete a questionnaire.  She looked me in the eye when speaking.  I struggled with her rolling Eastern European accent, so she stopped asking me the questions and let me complete the form myself.

She explained where I had to go next, what to do, what to wear – and then delivered the kicker:  “When you have the MRI, you will hold a cord that we will yank to indicate when you breathe in and then again when you are to breathe out.”  Oh hallelujah!

A few minutes later I was sitting in the same small waiting room, without hearing aids, once again feeling deaf and half-naked.  But this time I wasn’t grumpy because my new favorite technologist had switched from speech to using clear hand movements for instructions.

In the MRI room, she showed me the ‘yanking cord’ which was now thinner, more pliable and attached to the sliding gurney.  We changed the system slightly – one yank for breathing in and two yanks for letting it out.  In the previous MRI, I had become drowsy as I lay entombed in silence.  The ‘yank’ had pulled me from the edge of sleep and I wasn’t sure if I was supposed to be breathing in or out.

The technologist and I exchanged gifts; she gave me earplugs to wear during the noisy procedure and save whatever hair cells I have left,  and I gave her a happy thumbs up before climbing on the gurney.  They trussed me up like a turkey and then popped me in the MRI ‘oven’ which, by the way, is guaranteed to annihilate anyone with claustrophobia; luckily I only have a hint of it.  The procedure went without a hitch (a few yanks, but no hitch) and when they pulled me out, there were more smiling thumbs-up all around.

I don’t know if my advocacy was responsible for any of these changes.  Perhaps someone in the Toronto MRI business read my HHTM blog, who knows? All I know is that this time, with this technologist and in this hospital, my MRI was an accessible, stress-free procedure…that hint of claustrophobia aside.

 

Victory

About Gael Hannan

Gael Hannan is a writer, speaker and advocate on hearing loss issues. In addition to her weekly blog for HearingHealthMatters.org, which has an international following, Gael wrote the acclaimed book "The Way I Hear It: A Life with Hearing Loss". She is regularly invited to present her uniquely humorous and insightful work to appreciative audiences around the world. Gael has received many awards for her work, which includes advocacy for a more inclusive society for people with hearing loss. She lives with her husband on Vancouver Island, British Columbia, Canada.

14 Comments

  1. I spend a lot of time on the computer as it is, yet still appreciate the opinion of others who share hearing lose. But, I’d like to suggest a much shorter commentary. Thanks!
    Caroline

  2. Hi Gael,

    Thank you for mentioning that Spring Rolls has scheduled training for their staff. It`s being done by me! I`m looking forward to it, and maybe some site-audits too. the owners there are sincerely sorry and eager to fix the problems.

  3. Every small victory is a giant step forward to greater hearing accessibility. Don’t ever stop now, we have such a long way to go.

  4. Great update/news
    Wondering if you had send a letter of praises of this new turnaround so that they can feel good about it because often we complain too much and forgot to priase..Did they get this from you? …that keeps them getting on better with thie access policy.

  5. Healthcare! Vital. Thanks for mention of CCAC, and the line we also love is “she stopped talking to me” – haha – oh boy – so true, and so many have no idea they do this, ugh! Related behavior, if you are with another, say a couple with others, they focus all eye contact on the other, never to you – the exact opposite of what we need, eh? ugh again.
    Cheers, Lauren (our healthcare advocacy on this link, needs an update, all welcome to submit! see http://ccacaptioning.org/cart-captioning-healthcare/)

  6. Thanks Gael for the update and positive outcomes of your visit; it’s nice to know that some of the barriers that exist for people with hearing loss are disappearing. While you may not know for sure if your previous efforts were successful, I like to think they were. It may also be the case that some others have complained about the problem and someone finally listened and more importantly – acted. I find this is the way advocacy works; if enough people send the message, usually it will finally be heard and acted upon, especially, if the solutions are simple and cheap. I mean, look at your solution which was simple, very cheap and really effective. So keep doing what you’re doing and who knows – someday when you go back to that place, that same secretary will talk to you because she’ll know how to effectively communicate with persons with hearing loss. Just maybe, that person may be you (maybe you could write her a letter). Keep up the great work Gael and I’m really looking forward to seeing you soon. Bye for now!

  7. Thanks Gael, I wish this was a worldwide strategy for dealing with all patients, especially from medical doctors. A lot of patients, especially old, but even young (I’m 28) are HOH, so why are all these communications barriers still there? I have had it all, the whispering receptionist (in the Audiology and ENT department!), the waiting room agony whenever a name is called, or people are looking at me, the nurse who keeps asking the basic questions I could fill in writing in a whim, and the doctor talking at the computer instead of looking at me. How difficult is it, at least for ENT departments to follow some basic steps to help us communicate better?

  8. “When I told her I had hearing loss, she simply stopped talking to me….”

    Ha! I wish I had a dollar for every time that’s happened to me. It is alienating, but I understand that people can feel uncomfortable when they don’t know the basics of how to communicate with a HoH person.

  9. Thanks Gael,
    Neat topic.
    I normally do not read your regular columns, and for that I apologize, but this caught my attention, having had some MRI’s this year, and a good probability – I am 99.9% certain I’ve got a fair few more in my immediate future too. Loads of fun. I love after they know I have a hearing loss, and then the ear plugs, that they still like to persist in trying to talk to me during the scan. I find it half hilarious, half irritating…but usually, I will ask them not to, and repeat the instructions when they disagree, usually with more success.

    -grad student in NL

  10. I love this. I am so happy that they made the changes and helped you so much more this time.

    I felt pretty darn good today about speaking up — it is difficult for me to say that I am HOH and that some situations are difficult, but at an appointment today I spoke up. The Dr. was going to wear a mask (she felt she might be coming down with something and I KNOW I am) but I told her I might not be able to hear her with the mask on. She noticed my aids, took OFF the mask and proceeded to speak directly facing me the rest of the time. When she did the actual exam, she had on the mask, but she was very patient and spoke very clearly. What a HUGE rush it was, to have been “brave” and had it repaid so quickly!

  11. You should be so proud of this wonderful accomplishment with the MRI technicians. There’s no doubt in my mind that you probably helped the accessibility for all of us, proceed forward. In addition, I hope you were given good news with the results.

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