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.