Teachable moments

This is the third day that I've been, practically speaking, deaf. Indications are that it's quite temporary. A sudden overproduction of cerumen has both reduced my hearing by over 75%, and favoured me with a non-stop Greek chorus of tinnitus. All this is a sign of age, I'm told. Sheee-ittt!

Today's first round of heftier treatment has given me a little more hearing in one ear: enough to hear my spouse yelling at me because the news shows are too loud. It's an encouraging sign that the rest of my hearing should be back in a few days.

But what if it didn't come back?

Many years ago, I was much involved in accessibility for historic sites, and dealt with people from a number of (spade a spade time) disabled populations. Historic sites like ours, using a great deal of textual information, were well-placed to handle the basics of communicating our message to people with hearing disabilities. What I found necessary to teach the staff had to do with getting beyond the basics. We had an interpretive programme that had built a reputation for doing just that: not just administering what a trustee called "cultural sheep-dip," but answering in-depth questions and giving people something to take away and think over. Interpreters needed the patience to listen attentively to the speech of those who could not fully (or at all) hear what they said. They needed in turn to be conscious of their own speech and enunciation when responding. Even skilled lip-readers may be less than 50% efficient, so the best-framed questions and answers might take two or three repetitions to become clear.

We still learn. This experience has come upon me in the working half of my week. What I do requires constant, detailed conversation and a good number of phone calls. Yesterday I luckily realised that my phone's volume control controlled the volume of the call as well as the ring, allowing me to get some phone stuff done. Yet I couldn't train my co-workers to adapt to my problem, and thus I shared just a little in the isolation and frustration that goes with hearing loss.

Those who hear can't understand. It's not stupidity; rather that the experience of even partial deafness is quite beyond them. The hearing live in a world of noise and sound. Not all who do not hear as you do hear nothing. Ears that don't work can produce a variety of sound that belongs only to the possessor. Those whose deafness is acquired still speak in their minds the words they want to make clear with their tongues. In this third day I've already begun to notice my articulation getting worn round the edges. The simplest statement already requires care and concentration.

In the several advocacy communities I worked with, the deaf at times had the name of being cranky and difficult to please. If I ever bought into that, I'm paying now with insight. If this were my lot hereafter, I would be even more cranky and hard to please than I already am.

(As I've been writing, I've had "Celtic Thunder" on in the background. A song has finally come up that I can distinguish as English and not Irish: and as a song.)

Why do they do that?

This is a small item compared to some things of the same stripe. We were leaving our Turkey Day venue (in Maine, if it matters). The lobby here, which is close to the water, sends a blast of cool air into a warm interior any time the door opens. Just the thing for someone with trigeminal neuralgia triggered by such breezes. Bitter experience has taught me to wrap up far from the door here, no matter the outside temp.

So, I'm buttoned up with parka and bomber hat, flaps down, before turning the corner into the wind tunnel. Behind me, a middle-aged woman brightly chirps, "well, you sure look ready for this winter weather!"

I turned around and said, evenly, "unfortunately, I have to cover up like this due to a neurological problem." Then I turned and went out without waiting for the reaction.

What prompts people who appear otherwise civilised to volunteer such stupid and insensitive remarks? I know at least one member of the audience here has had more than her share of such comments.

I remember an even worse display from my Revere House days. We were having a staff seminar on dealing with people with disabilities*, and doing it whilst open to the public. I had asked the presenter how difficult it was to navigate a wheelchair over Boston's quaint brick pavements. He suggested I take the wheelchair and try it, which I did. I turned into public view, and a female visitor came up and started gushing at me about how brave I was to take on the Freedom Trail. So help me, she was talking baby talk.

Inside the adjacent admission booth, watching the whole display, was a staff member who herself had some mobility problems. After the woman had spent all her store of gush and went inside, the staff member came out of the booth. She said "I didn't really think this programme was necessary. Now I do."

I didn't understand the condescension then and I don't now. For the record, the Beast didn't arrive to spoil Thanksgiving again. Paid a visit the day after.

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*I have my share, so let's call a fucking spade a spade, eh?