By Mark E. Smith
If you speak with others about the effects of their disabilities toward their futures, you’ll hear a common theme: Uncertainty.
What’s interesting, though, is that most aren’t simply speaking of the literal uncertainty of their physical condition – as in, will it get physically better or worse or remain static? Rather, when most speak of how disability breeds uncertainty into their futures, they’re speaking toward the larger picture – that is, health, career, family, finances, and so on. To paraphrase the sentiments of many, As I move forward with disability, I’m overwhelmed by all of the uncertainties in my life….
Yet, what if we challenge such universal thinking with a provocative question: Does disability, in itself, truly create inordinate amounts of uncertainty in our lives, or does disability simply highlight the universal uncertainty in life, itself?
To get to the heart of the answer, we need merely to consider the world around us, from as close as family members to as seemingly removed as the stories that we see on the nightly television news – from local layoffs to distant disasters. After all, how much certainty is there really in anyone’s life?
Now, in some aspects, there’s seemingly more uncertainty in some individuals’ lives than others. For example, statistically, a Detroit autoworker’s career is more intrinsically uncertain than that of a physician practicing in Detroit in today’s economy. Yet, again, in a larger picture, uncertainty truly looms with striking equality in the lives of both. If both buy a lottery ticket, who will win or lose? Of the two, who will find love or lose love among relationships? Which might live till 89, or might die at 65? On the drive home, which will get in a life-changing accident, or never have an accident? Indeed, we could speculate on these two individuals’ futures in countless ways – all because their futures, like all of ours, are ultimately uncertain. None of us truly knows what tomorrow – or even the next 60 seconds – will bring. We can plan, prepare, and predict – but uncertainty is ultimately a fact in each of our futures.
Think about your own life and those around you – how much uncertainty have you witnessed over the past decade? Chances are, more than you realize, from unexpected situations in your own life – both positive and challenging – to world events, like 9/11 or the many natural disasters that have occurred around the globe. Maybe in your life during the past decade, you lost loved ones, had a child, were laid off from a job, got a job, became ill, got healthy, and on and on. And, if you’re like most of us, those types of events – which are part of all of our lives – absolutely contained the unexpected. The fact is, all of our futures – as shown by our pasts – are full of uncertainties. And, with few exceptions, if you have a disability, it, too, occurred as one of life’s uncertainties, where it wasn’t predicted, just another uncertainty that came your way.
Being that all of our futures are ultimately uncertain, why then are those with disabilities seemingly more preoccupied with that reality than others?
This question was especially peaked for me when I had an inspired conversation with a remarkable young woman. I would politely guess that she’s in her early 30s, and I must say that in our conversation, I was struck by her intelligence, poise, and grace. She’s one of those rare people who, even if you never met her before, you could sit down over coffee and share stories like old friends. And, in an hour conversation, we did just that – chatted like old friends, speaking of our pasts, presents, and futures. But, what deeply touched me was the uncertainty that she expressed about her future. See, she has a degenerative condition, but the long-term prognosis remains unknown. However, that fact, in itself, she candidly shared, has effected the way she sees her future, where while she once envisioned a future of marriage and children, she now focuses day to day. I got the distinct impression that the uncertainties of her condition have brought her vision for her future to a partial standstill. And, I was puzzled by it. There I was, speaking with an an amazing woman, more full of life than most people I’ve met, and if anyone has the potential to be an amazing partner and parent, she tops the list. Yet, for her, the uncertainties that her disability might have on her in the future seemingly hampered her vision toward the future, unable to look toward long-term hopes and goals. I felt like if she saw what I saw – that she has far more potential than most! – she could begin embracing the future, and stop avoiding it based on the uncertainty that she described based on disability.
In this way, I wondered why a vibrant 30-something woman, who happened to have a diagnosis of a degenerative condition, would seemingly avoid actively pursuing some of her dreams due to an “uncertain future,” whereas a woman without such a diagnosis has no qualms about the future, even though her future, too, is ultimately uncertain? After all, no one can guarantee a healthy 30-something woman that her future will be ideal, just as no one can guarantee that a 30-something woman diagnosed with a degenerative condition will have a bleak future – both individuals’ futures contain absolute uncertainties. Therefore, again, does disability, in itself, breed more uncertainty into one’s future beyond the potential for uncertainty that’s intrinsic to everyone’s life, or is it simply a false perception surrounding disability?
The answer I’ve come to understand is, no – disability, in itself, does not make life more uncertain. Rather, disability simply brings life’s uncertainties to the forefront of our awareness – and people are unsettled by the realization of uncertainty in all of our lives. See, most causes of disability are so random – resulting from an unforeseeable accident or illness – that they highlight the uncertainty of life, itself. And, while we like to dream of “ideal” futures, we don’t like to acknowledge the possibility of the countless challenges that can arise in anyone’s life. Yet, when we have to acknowledge through disability that life for anyone can change at any moment – as with my acquaintance’s life – it brings life’s uncertainties to the forefront of our minds. Put simply, when we realize that life, itself, is uncertain, it makes many people more skeptical and fearful toward the future – emotionally and mentally paralyzing some. Really, it’s almost impossible for anyone to view disability or illness and not be reminded in the immediate of the uncertainties in all of our live, and for some it’s even more impacting toward the long term.
As those with disabilities, when we realize that it’s not our individual circumstance that breeds uncertainty into our futures, but that uncertainty is merely a part of life, itself, then that acceptance becomes liberating and empowering. Everyone’s future contains uncertainties, so when we, as those specifically with disabilities, recognize that putting our lives on hold due to future uncertainties is irrational, we’re instantly liberated, no longer trapped by fear. Life is uncertain, and solely based on that fact, we should live it to the fullest. Disability or otherwise, let us not fear what could be, but embrace what actually is, and our quality of life and accomplishments skyrocket.