Wednesday, June 23, 2010

The Time of Lizards

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.

A life. 


Susan Stinson said...

My father enjoys . . . cartoons again . . . moreso than his once beloved Wordsworth. Moreso than any one or the collective team of romantics that danced at the core of his profession and whose words sat on his lips for over thirty years: "The child is father of the man," he would tell me, and his words tumbled into me serving as the building blocks of my childhood's consciousness . . . .

I ask him, "What do you think of BP's situation?"

"Well!" He starts, animated in his wheelchair, grabbing the edges of the wheels as if to steady himself, as if to leap . . . but then his eyes look at his hands, and his face folds into a frown, which he releases when his eyes turn back to the televison. "I guess I can't really remember." His lips curl upward softly and his mind returns to the blissful business of thirty minutes with The Backyardigans . . . .

I view his face in all his innocence and say, "Tell me again, dad: 'The child is father of the man' . . . "

and I wait five seconds . . . ten . . . a minute later . . .
"and I could wish my days to be bound, each to each, by natural piety," he whispers as if unsure in his certainty, never moving his eyes from the television's screen.

You are right. It is we who are disabled--when we are unable or, perhaps, unwilling to honor what is different, or what changes right before us. His life. My life. Our lives.

This IS living.

Thank you for your lovely reflection on your mother, your father, and their lizzards :o)

Beth Kephart said...

Reiko, this is huge.

So calmly presented, so turning back on itself. I, too, was struck by Katy Butler's story. I am equally moved by your mom and the lizard.

Anonymous said...

I am disabled and have been collecting SS disability benefits since 2001. In the meantime, I have published 3 memoirs, none of which discuss my disability.

Is my life worth living? I believe so! Maybe you'll think the quality of my life is not as good as yours. But quality is subjective, is it not?

This might make you laugh, but, hey, I prefer to be alive than dead!

reiko rizzuto said...

You would love talking to my friend Kenny, gigi

reiko rizzuto said...
This comment has been removed by the author.
LR_Cooper said...

So pleasantly surprised to find my dear friend Reiko speaking of disability. Vision and neurological disabilities are so invisible and misunderstood by others, I'm not sure that Reiko knows that I call myself "vision impaired", "neurologically different", "developmentally delayed", "sensory integration disorder", etc." It doesn't matter, as I agree, the labels are not useful or helpful. I chose not to believe the diagnoses or pronouncements of "learn to live with it" or "it's genetic" and over the last 30 years, by enlisting my own neuroplasticity and the help of MANY, I have healed "double vision/lazy eye/wandering eye", scoliosis, dizziness, anxiety attacks, and chronic depression without surgery or drugs. Even as I list what has been healed, I think how inadequate are those terms. They may serve to pique the curiosity of others, but they do not begin to describe the revolution that takes place in my brain when I embrace and intend curiosity, trust, safety, presence, and love. Smart, conscious witnesses to the healing process (therapists, coachs, guides, healers, etc.)...are a big help, too! Love you, Reiko!