Wednesday, December 23, 2015

WHO ARE WE ANYWAY?

We drove down to Maine Mall yesterday - three days before Christmas. Yes - it sounds crazy to me as well. It was raining to boot, and the temperature was at that nutty place where you had either too much or not quite enough clothing on so we were constantly removing something or putting something on to adjust the personal thermostat.

We got some things done. Had a Starbucks coffee at a high table and watched people passing by. It’s amazing. You ever feel like some people left the house a little quickly? I am reminded of the diversity that seems to define who we are and wonder at all the outcry about Syrians and others who are coming into our country to find refuge from tyranny. Since when was that a problem for us? I always see middle eastern or African men and their women in their distinctive dress when I go to the mall but yesterday I saw none. It probably means nothing. Yet it made me wonder: have we in our xenophobic pandering to the ignorant and bigoted come to the place that we deny who we are?

I’ve always wondered if the economic factor were removed from Christmas, what effect would it have on the celebration itself. I’m sure “annual” Christians would celebrate but what about others for whom religion is not the driving factor in their lives? And really folks, that’s quite a few of us. Or, dare I say it, what about persons of other traditions - you know, non western traditions?

Here it is for me: the retail industry makes Christmas happen. And, perhaps you have noticed, any religious meaning is carefully avoided in marketing. The way Christmas is practiced in this country is mostly from a Pagan tradition anyway, not Biblical.

I enjoy it, nevertheless. CA and I exchange small gifts. The family from afar send boxes filled with gifts. It’s fun. But it’s not religious. We celebrate each other and reaffirm that our love is real. We remember those who are no longer with us. Christmases past.

We had a late lunch at Panera - a half cob salad and baguette. It was fun, even in the late December rain and record breaking warm temperatures. Then I thought: where I hail from, South Louisiana, this was normal Christmas weather. Strangely, that thought doesn’t comfort me. I live in Maine. Let it snow. Hmm, just as I thought: nobody’s listening.

Friday, December 18, 2015

DO YOU MIND TURNING THE TV OFF?

I can’t even imagine attending a sporting event of any kind. I stopped going to concerts years ago. I can hardly handle a quiet restaurant with Muzak in the background and one loud mouth table (there always seems to be at least one). So I (we - my partner in life and I) pretty much avoid noisy places. Unfortunately, more and more this means even friendly groups of six or so, even if they understand my disability. This is not self pity at all. It’s an accommodation to limited ability.

Some of my friends think that because I have these obscenely expensive hearing aids that I now have “normal” hearing. I tell them differently but it’s to no avail. In a room filled with gregarious friends, loudness is the norm. I get that. And I know that I shall never have normal hearing. Normal hearing can handle noisy places by the processes that go on in the brain to filter and select the “noise” we really want to hear and understand. Anyone with a disability has an additional burden to take care of her or his particular needs in any situation.

Blind people are blind. A white cane or a dog signals the condition. Paralyzed or crippled people are obvious and need little identification. Accommodation, perhaps but the condition is usually clear. You just can’t see hearing loss.

About all we who have hearing loss can do is make sure the issue isn’t swept under the carpet of negligence and fatigue. Hang in there my hard of hearing friends. Speak up for yourself. Claim the best seat for listening at the table. Insist that the TV or music be turned down of off. Insist that someone face you when talking to you. It’s your right and it is necessary for your general well being.

And - be nice. A little goes a long way.

Thursday, December 10, 2015

THE SIGN SAID "HEARING ASSISTENCE" AVAILABLE

I recently had occasion to have business in a small claims court. I realized long beforehand that I might have some difficulty understanding in such a municipal space.

As we walked into the hallway outside the court room I noticed a sign on the door - you know the one - the big stylized ear promising hearing assistance beyond these doors. I was hopeful that the room was actually looped. That would have meant that as long as someone was speaking into a microphone I would have that voice broadcast directly into my hearing aids.

Alas, such was not the case. When we notified the bailiff of my problem, he said they had earphones available. After a few minutes he came over and offered me these on-ear units that every time they touched my hearing aids they pushed one of the configuration buttons on the units and therefore proved to be totally useless. The behind the ear hearing aids are my ears - not my actual ears. Headsets that simply rest upon the ears (hearing aids) do not work. I thanked him and prepared to suffer through the proceedings virtually deaf.

The judge, whose efficiency was outstanding was nevertheless completely lost to me as he spoke rapidly and often with head bowed to his paperwork. When he did face us and speak directly I could pick up most of what he said. The entire experience was lost on me. CA handled the whole thing without my planned assistance, and she performed perfectly.

I plan to write this judge and suggest to him that over the ear headphones would be a vast improvement, while looping the room would be the best solution. Without such accommodation to the hearing impaired we are effectively excluded from public services to which we have the right of participation.

Thursday, December 3, 2015

SELF ADVOCATING

I’ve heard it more than a few times, “I didn’t know you were hard of hearing”.

My hearing loss actually began back in the 80s when I noticed some mild loss and actually had my hearing tested at Eastern Maine Medical in Bangor. The result was that I did have some loss but still had hearing that fell in the “green” zone. I didn’t need hearing aids according to the audiologist. So that was it. I forgot it and carried on discounting the audiologist’s advise: to have my hearing tested regularly because the condition is usually progressive. And as I have come to find out, it is also “sneaky”. It’s a real problem before you are aware of it. And anyway, who wants to wear hearing aids?

If it’s a problem for me to be aware of my own disability, how must it be for others to know of my limitations? Hearing loss is an invisible disability. There is no white cane or crutch to signify a disabling condition. There are some signals but we, as a culture, are not prepared to tune in to them. That person in a group who is not participating in the conversation may not be timid, she may be hard of hearing. The man who keeps asking that something be repeated may not be inattentive, he may be suffering from hearing loss.

When I picked up my first hearing aids back in the summer of 1997, the audiologist told me that my hearing loss way back then was documentable as disabling. I laughed. Disabled? Really? I can walk and chew gum at the same time. What’s disabled?

I have since learned my lesson. First, having severe hearing loss is disabling. Even with hearing aids, what you get is not “normal” hearing. Second, if I do not speak up for myself no one else will. This is the hardest part for a social person.

It is not uncommon to find myself in a situation where I want to be a part of a conversation and simply can not understand most of what is being said. i can simile and nod and go away frustrated and perhaps angry or I can speak up and say what I need to be a part of the conversation. This is a work in progress. I don’t want to be treated specially. Yet, society is a long way from integrating the hard of hearing into the main stream. There is a beginning. the conversation has begun. Meanwhile, I may ask you to face me when we speak to each other. I may ask for a repetition now and then. I may ask that the TV or music be muted. I may simply take a break from the stress of trying to understand and go for a walk. It’s hard work and not much fun. And yet, I do not want to be left out. Ah, yes - there’s the rub.