I’ve been on full disability for the last 10 years with a disorder called Primary Lateral Sclerosis, so I felt quite at home at the dinner dance on July 15 hosted by the Progress Center for Independent Living.
Try to picture the large, third floor hall at the Park District Administration Building, packed with 86 people with disabilities — for example, Larry and Clark with cerebral palsy, Horacio and Geo who are blind, Sara with Arthrogryposis Multiplex Congenital Distal Type 5 — and their personal assistants. A traffic jam of electric wheelchairs. A DJ playing everything from Mexican pop to disco. Men and women functionally paralyzed from the waist down out on the dance floor getting into the beat by shaking their heads, shoulders and arms to the pulsing rhythm of the music.
At my table, Loree, Jonathan and Geo were all blind. When Loree asked if so-and-so had arrived, Geo said, “I looked around but haven’t seen him yet.” Everyone at the table cracked up laughing. That kind of self-effacing humor continued throughout the evening. So did the laughter.
Many people I know would react to an evening spent among people with severe disabilities by thinking, “There but for the grace of God go I.”
What I want to say, partly because I’m a person with a disability myself, is, “There, even with the grace of God, you will also be some day.”
A big part of the problem, at least for us middle-class folks who live in Forest Park, is that we’re scared to death of dying and the gradual falling apart of our bodies that often leads up to it, so we avoid dealing with it. We keep kicking the mortality can down the road.
And it’s not just the denial of death that prevents us from living fully right up till the end; it’s also the unwillingness to embrace aging itself. When I tell people I’ll be celebrating my 70th birthday in a few days, I see a look on their face that indicates they’re thinking, “Celebrating?” And to make the best of what they likely feel is an awkward situation, they say, “Oh but you don’t look that old at all.” As if that were a compliment!
Ashton Applewhite in a book titled, This Chair Rocks: A Manifesto Against Ageism wrote, “Denial creates an artificial, destructive, and unsustainable divide between who we are and who we will become.”
“I’m not saying that aging is easy,” she continued. “But it never dawns on most of us that the experience of reaching old age … can be better or worse depending on the culture in which it takes place. And American culture is grotesquely youth-centric.”
Witness the fact that ABC News reports that men spend $1 billion a year fighting baldness — in spite of the fact that it’s cool now days to have a chrome dome — and older women do unnatural things to their bodies in order to pretend that they’re younger than they really are.
Unlike here in the U.S., Thai culture respects and honors old age. Thais would never call a person “nong” (young) instead of “kuhn” (old). In that culture it would be a put down. When I’m in Thailand, I’m treated like royalty because I’m old.
To show how stuck I have been in what Applewhite calls our “ageist” society, I only started using a walker four years ago even though I was falling on average twice a month. I explained to my daughter my resistance to using what used to be my mother’s walker, which I had stored away in a closet, saying, “It makes me look like an old grandpa.” To which she replied with a smile, “You are an old grandpa.” It was a loving version of “the king has no clothes on.” Denial was preventing me from accepting who I am.
Atul Gawande, a surgeon, wrote a book titled Being Mortal, which made the New York Times bestseller list. Talking about his father’s last days, he wrote, “Somehow, instead of holding on to the lifelong identity that was slipping away from him, he managed to redefine it. This is what it means to have autonomy — you may not control life’s circumstances, but getting to be the author of your life means getting to control what you do with them.”
Watching his father walk through the dying process enabled him — a surgeon who was trained to fix every problem — to begin to see the blessings that can come with aging. He wrote, “Only now did I begin to recognize how understanding the finitude of one’s time could be a gift.”
Right now, I wouldn’t go back to 16 or 25 or 39 years old for all the tea in China. Right now, disabled and gradually falling apart, I’m happier than I have been since childhood, in large part because I can no longer avoid the reality that my days on this earth are numbered.
Applewhite argues that we in this culture are facing a conundrum: We want to live a long life but we don’t want to get old. “They spend a lot of energy,” she wrote, “sustaining the illusion that the old are somehow not us.”
The way to get our feet back on solid spiritual and psychological ground, she tells readers, is to break through denial and become what she calls an “old person in training.”
“Becoming an Old Person in Training,” she argued, “loosens the grip of that exhausting illusion [that we’ll never get old]. Becoming an Old Person in Training … swaps purpose and intent for dread and denial. It connects us empathically with our future selves.”