My father recently sent me a picture of my mother playing with a lizard. It was a Jackson’s Chameleon, green and black with three horns on its head. You might think how cute, or that she was visiting a zoo with children, or that she is an intrepid exotic animal lover. You might begin to question your assumptions, though, when I tell you that my mother has dementia, and the lizard was something she and her caregiver rescued from the side of the road.
Last night I had dinner with Kenny Fries, renowned disability expert and author of several books, most recently, The History of My Shoes and the Evolution of Darwin’s Theory. We were talking about disability, and Alzheimer’s, and a Father’s Day article in the New York Times, by Katy Butler called “What Broke My Father’s Heart” about a family’s struggle with stroke, dementia, pacemakers, and aging. We were both moved by the story. He had some issues, however, with the disability aspects, particularly with questions about quality of life, and who decides when a life is worth living or what the experience of that life is.
Kenny is a born disability activist. He was born missing bones in his legs. The majority of the rest of us, the “normal” ones, do not start life thinking much about disability. But we will all become disability activists eventually. Because, we are all on a life path that ends in disability. It is not other. It is, or will be, us.
This notion of disability as both ordinary and inevitable is part of what Kenny is writing about in his next book. Disability has entered my life in the form of my mother, just as it has for some five million people who have Alzheimer’s, and ten million unpaid caregivers who love them. These numbers are projected to explode, and I may become one of them. If I don’t develop Alzheimer’s, something else will happen to disable me (unless I fall off a caldera and am killed instantly). But if I do, I have my mother to look to for my future.
She has been losing her memory for twelve years. She can’t feed herself, dress herself, put together a sentence. She needs full time care. Yet she can enjoy her grandchildren, even if she doesn’t remember their names. She laughs. She apparently likes lizards.
Would I want this for myself in a perfect world? Would I prefer the alternative of “assisted death” that author Terry Prachett is advocating for?
One of the strategies that Kenny Fries espouses is for our society to turn away from the “illness model” where we try to cure disability or treat it in nursing homes, and give assistance instead to families who are trying to help their loved ones live quality lives. The strain that Katy Butler’s mother suffered, caring for her husband for seven years at the expense of her own health and life, doesn’t have to be the norm. It is something my father would do, though we are not at that stage quite yet, but not something any of us would want for him. For the moment, he has managed to get some help from home caregivers who amaze me with their joy and patience and competence. They are helping my disabled mother to live a life of laughter and hugs and Jackson’s Chameleons.
I know why BP is lying to us. But why are we lying to ourselves?
This oil spill has become a blot — not just a slick, deadly blot in our ocean, but a black spot on our vision so that we can no longer see the future, or the past, or even the present clearly. And it isn’t just the spill we can’t see, but oil itself.
BP, of course, is counting on this blindness. We can watch the oil blasting out of the broken pipe. But if we don’t measure it, if we drop dispersants on it so it hides out of sight, they know we will forget it, even as it is happening. We will question whether the dead dolphins and turtles that washed up on shore might be entirely unrelated, since they were not (yet!) obviously suffocated by oil. We will forget that the oil is already in the water, as the Governor of Florida did when, on May 12th, three weeks after the rig exploded, he called for a marketing campaign to tout Florida’s clean beaches. BP knows that it doesn’t matter that the chemicals they are dumping into the oil are full of cancer-causing compounds and neurotoxins that might kill 25% of all organisms in their path, not to mention move up the food chain, because we will forget, or not make the connection, even if we are all growing two heads 20 years from now. They have seen from the Exxon Valdez spill that they can spend nearly two decades fighting against paying the tab and win.
The future is on their side, because the future is too overwhelming for us to think about.
Then there is the past. Who cares? Looking back is merely whining and Sunday morning quarterbacking. Plus, it’s boring. We don’t really want to have to sift through and assign blame to all the deregulation and grossly mismanaged oversight by previous administrations that allowed this to happen in the first place. Even that sentence is exhausting to read. The problem is now. The Obama administration is now. We want the spill stopped, and they are the people who are responsible, even if this just dropped in their laps and they don’t have a clue how to do it. We want it to go away. We want it to have no effect, to never have happened; we want the oil that is continuing to impregnate our ocean after more than 50 days to never touch our white beaches, and if Barack “Whose ass do I kick?” Obama can’t do that, we will blame him for everything he has done, and everything he hasn’t done, both at the same time.
The problem with being blind to the past and the future is that the present is also too overwhelming, and too confusing, for us to see.
Consider Mississippi Governor Haley Barbour who blames the national press for scaring away the tourists who should understand, like he does, that the tar balls on the beaches “are no big deal.” What about Louisiana Governor Bobby Jindal’s protest against a moratorium on new permits and the suspension of already approved drilling projects because of a “potential” loss of up to 10,000 jobs? Just this morning, Louisiana Senator Mary Landrieu echoed that protest on the grounds that deepwater oil rigs “employ, directly, hundreds of people and indirectly thousands.” These are the voices of local representatives for the people whose beaches are being covered in oil “like chocolate,” “like pancake mix,” where all the fisherman are beached, communities are suffering, an ecosystem that exists nowhere else on earth is effectively dead. Yes, lost jobs are terrible, especially in this economy, especially for these communities. But in what formulation of “now” does it make sense to blame Obama for hurting people (whose lives are now being ruined by an oil spill) by trying to ensure some protection against future spills?
It’s like we are sitting in a car, driving down a road and we can see a brick wall in front of us. We are going to hit the wall. But this is the only car we have. This is the only road there is. We can’t think about stopping the car, about walking, about making a new road. This is our car, this is our road, this is the wall. And so we crash.
Why can’t we envision a life without oil? Why is oil such a given in our system, so much a part of our narrative, our identity, our way of understanding the world, that we can’t imagine letting go of it?
Oil, as energy, is a newcomer to the history of man. We only drilled our first oil well about 150 years ago. Electricity, cars, followed. A juggernaut to be sure; a systematic change in our way of life. But not an essential part of our being.
In fact, in that last 150 years, we have welcomed many new technologies into our daily lives – airplanes, television, telephones, computers, faxes, and personal electronics of all kinds – and we have also seen many become obsolete. My 12 year old has never seen a rotary phone except in a museum; his is the generation for whom “phone” is the thing in your pocket that also plays music, locates you through a satellite, and shoots video. He has never played a record, watched an eight-track, used a floppy disk, or typed on a typewriter. Televisions must now be HD, or have a converter box to function; there is a lively argument about whether, and for how long, printed books will continue to exist.
We live in an age where we are tumbling over ourselves in the quest for bigger and better and new. While there are many early adopters, many more of us have gotten so used to the breathtaking pace of technological advancement that we wait for the next generation, or the competition’s answer, before deciding what to buy. Everything becomes obsolete so fast.
Why not oil?
Why do we think instead:
This is how we do it.
This is how the world is.
This is how we’ve always done it.
There are no other jobs. There is no other solution. This is the only way.
No, no, no, and no.
But still we are stuck in our black blot, seeing neither past, present or future, suffocating, as surely as the pelicans are, in oil.
Why do we believe this is how it must be?
Also posted on The Huffington Post.
Ming just returned from a five-day ceramics workshop. He was learning about wedged coil building, which is something he has never done. He loves the wheel, and he is used to making four pieces in an afternoon; but last weekend, it took him four days to finish a single piece.
Every night when I talked to him, he said, I don’t know what I’m doing, I can’t get this done, the clay is too wet, the clay is too dry… He was beginning to face the fact that he might not have a single piece from the entire workshop. It was a new experience for him not to know where he was going, not to be comfortable as he was creating. And every day, the piece changed. Other potters would say, That looks good. Why don’t you stop? Isn’t it done? But it wasn’t.
It was a lesson about time. About how time is an ingredient too. I thought of my own memoir, coming out nine years after I lived it. After two years, the draft I had was too full of me and had to be slashed in half. After four years, the draft became a hybrid novel/memoir; after six years, a meditation on narrative that manipulated form so the memoir moved from third person into first as personal awareness was earned. Now, all of that artifice has fallen away – a gift of time – and the final book is tightly woven and startling to me: this week I read the page proofs, looking for typos and for sections that I will read in public, and I found myself, at times, in tears.
It was the gift of time that I found the courage, in now-forgotten moments over these last nine years, to write this way. It was the gift of time that I could see a bigger picture, a different angle, a universal experience in these little things that happened to me. Each morning, the artist wakes up and looks at the world from a new place. And finally finds himself in the right frame of reference to finish the biggest, most organic piece of work he has ever produced on the very last day of the ceramics workshop.
If the past has already happened; if it is an event or thing that is at least as far away from “now” as the split second we need to begin to describe it…
And if the future is a realm of possibilities that might manifest someday, but that exists now only as fretting and testing and planning, and if the future too is also something that is far enough from us that we can put words and consideration to it…
If both of these are defined by our ability to articulate them…
Then what is the present?
And what is memory?
Memory is the way we choose to describe the past, from the moment we are in now when we make that choice. A moment which is, of course, “future” to that past we are describing on the timeline we all believe in.
Memory is our only tool to understand and keep the past, whether it is our own memory, or another person’s, or a compilation of memories set down as history in a book.
But if we continue to move into the future, away from the past, and if our lives contain an always new and different constellation of events and perspectives as a result, then the past is always new because the future is always coming.
As this happens, memory changes.
And the past changes too.
Posted: June 2nd, 2010
Categories: Random Thoughts
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