As I sit here in the sunshine, preparing a hope talk for a conference on compassion fatigue in the health care environment, I find myself reflecting on change, and the advocacy that generates change, and the fatigue that assails and embitters the advocates.
It’s amazing how quickly things can go forward. Thirty-five years ago I entered the adult world with small technologies, a white cane to help me get around, a Braille alarm clock to wake me up, a slate and stylus with which I could punch out Braille dots by hand. I never imagined the time when I would have a talking clock radio, a talking thermostat, a talking computer, a scanner that reads to me, a Braille printer that prints things I can read and a GPS navigational aid that tells me where I am and what direction I am going.
That said, it is discouraging how slowly some things go forward. Traffic signals can be adapted to share their red and green messages with blind people, but most of them just keep on the old way. That won’t change until somebody makes a very public fuss. What’s more, new elevators have sported Braille and raised print numbers for thirty years, but the elevators in my dentist’s building still operate the old way, with heat sensitive panels that offer only heartache if you can’t see them. The dentists have long claimed that they asked their landlord to make the changes. In the meantime, they hope I will continue to find the seventh floor somehow.
Meanwhile, it is absolutely infuriating to stand by helplessly while some things go backwards. I worry that I won’t be able to find a stove I can use when it is time to replace my old stove. My worry extends beyond stoves to embrace dishwashers, laundry machines, and all other things with inscrutable electronic displays. In the old days, when we bought appliances, we took them home and made them accessible by filing notches into their dials, or marking their numbers with strips of tape and blobs of silicone. But there is no way around it now. The average person is powerless in the face of an electronic display. Somebody needs to speak about this. But who will speak, and to whom?
It’s not hopelessness that gets me down when I consider all of this. It’s advocacy fatigue. I don’t mind being blind, but I get very tired of asking for things that compensate for the deficiency. I get tired of being angry, which is what I have to be before I can motivate myself to start the action that changes these things. I don’t want to be angry. I would rather drink exotic beverages with David on the veranda, and hear about the world from the younger generation, and hear about the history of the world from the older generation. I want to savour fabulous dinners, and work in my flowerbeds, and pet Pirate, and read novels, and play music, and learn new counselling techniques. I want to play cards with friends, and go to storytelling festivals, and sleep through the night instead of waking at 3:00 to feel the plan for an angry letter pushing back the peacefulness of my dreams.
Still, I find myself wondering what efforts are being made to ensure that blind people will be able to use electrical appliances in the future. It is not enough to be infinitely grateful to the people who have created today’s magnificent technological abundance. It seems to me that I ought to be taking some kind of action, rather than just worrying about the future. And that, I guess, is why I need to drink exotic beverages with David on the veranda, and hear about the world from the younger generation, and hear about the history of the world from the older generation. I need to savour fabulous dinners, and work in my flowerbeds, and pet Pirate, and read novels, and play music, and learn new counselling techniques. I need to play cards with friends, and go to storytelling festivals, and sleep through the night whenever I can—because these are the things that make life worth living, These are the things that give me the energy to ask for consideration, to write angry letters when nothing else will get attention. I have to remember that successful advocacy—far from being the cure for advocacy fatigue—is actually the demon that tempts you to make it worse by doing more advocacy at times when you ought to stop for a drink on the veranda.
Perhaps our greatest possibility for error in the face of fatigue from advocacy or compassion is to assume that nothing good can be happening as long as we are sitting on the veranda. On a really good day, somebody else may be picking up the slack while we are having a rest. And if we persist in thinking that the solution lies only with us, we may not notice the efforts others are making, and we may neglect to thank them.
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