There is one common yet mostly unspoken notion that everyone I know with a disability is quick to condemn in the strongest possible way.
It’s the idea that many people with disabilities live with restrictions so great that others think of us as lesser sorts – less valuable and productive as people, less capable to give and not just take, and less able to find fulfilling lives. This attitude rarely gets expressed in polite company, but occasionally pops up in movies. Two come to mind – one is “Million Dollar Baby,” where Maggie (Hillary Swank), the heroine, is a boxer who gets injured and ends up becoming a ventilator-dependent quad. Though only 33, she wants to die – she’s gotten all that life has to offer. Her manager, Frankie (Clint Eastwood) obliges her with a fatal injection. The other movie is “Me Before You,” a love story where the hero is hurt in a motorcycle accident and decides to kill himself; he doesn’t want to live “half a life.”
That’s the issue in a nutshell: half a life. It’s a direct insult to any disabled person who sees their life as rich and rewarding and does not feel damaged beyond repair by their limitations. This is also a common feeling directed toward old people, disabled or not, but especially those who suffer from dementia or are so physically impaired that they are confined to a nursing facility. “Who wants to live like that?” is a standard response, the same one often used in reference to those of us severely incapacitated, either physically or intellectually.
One person who doesn’t want to live as an old man with a disability or chronic illness is an oncologist named Ezekiel Emanuel, brother of the mayor of Chicago, Rahm Emanuel and Hollywood kingmaker, Ari Emanuel. Dr. Emanuel wrote a long article for The Atlantic called “Why I Hope to Die at 75.” He quotes reams of statistics that point out, rather bluntly, that one, “there is an increase in the absolute number of years lost to disability as life expectancy rises,” and two, “by 75, creativity, originality, and productivity are pretty much gone for the vast, vast majority of us”. Yikes. At least statistically, we will all become more dependent via “disability” (probably meaning here, “debilitating disability”) and less creative and productive as we age. As a culture, we are stretching out old age and increasingly, the elderly won’t die, just live on in some attenuated, “half-a-life” way. The CDC backs up Dr. Emmanuel’s claims. They report that “85% of older adults have at least one chronic health condition and 60% have two chronic conditions.”
What chronic conditions? For instance, “over the next 15 years, there will be a 50% increase in the number of Americans suffering from stroke-induced disabilities.” Also: there is projected “a nearly 300% increase (115 million) in the number of older Americans with dementia by 2050.”
Most of us, of course, see ourselves as outside these grim statistics. We are the outliers, the Betty Whites and the Mel Brooks’s who actively live healthy lives and will simply sidestep heart disease, cancer, stroke, Alzheimer’s, diabetes, hypertension, and COPD. Even millions of us with some level of functional limitation see ourselves as continuing to live fruitful lives into our seventies and eighties. We would never think that beyond our manageable disabilities now, we would ever contract something more severe like stroke or dementia. We are the disabled outliers.
Personal note: I had that exact mindset the day three weeks ago when I suddenly was struck by a TIA, or mini-stroke, followed by a series of them and an operation on my right carotid artery. This was only a warning sign, but those stats about stroke are now germane to my life and those around me.