Facing the Uncertain

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.

Count on the Counterintuitive

By Mark E. Smith

Among disability’s most intriguing aspects is in its capacity of proving counterintuitive – often to a point that makes one rethink human potential. See, the definition of counterintuitive is when we recognize that something is the opposite of what we expected – and that’s disability experience at its core.

Disability has a way of demonstrating one’s exceptional strengths among presumed weaknesses – and does so in ways that can seem so counterintuitive that they are mind-blowing. Literally, it’s often the case with disability that those who appear as the weakest are actually the strongest, where those who appear as the most downtrodden are actually the most empowered. Indeed, there’s a counterintuitive element to disability that turns common-sense perception upside-down.

Many would assume that an individual in a restaurant, who was using a wheelchair, fed by others, uncommunicative, with no facial expressions, strikingly incapacitated, might be an “invalid,” to the point that most waitresses wouldn’t likely even address the individual directly, probably assuming that the individual lacked cognitive abilities. Yet, through the amazingly counterintuitive nature of disability, that individual – using a wheelchair, fed by others, uncommunicative, with no facial expressions – could be among the most brilliant individuals in the history of mankind: theoretical physicist, Dr. Stephen Hawking.

While Dr. Hawking maybe an exceptional – albeit, perfect – example of the counterintuitive nature of disability, it can be part of all of our lives. In fact, in living our best with disabilities, our lives should demonstrate the counterintuitive nature of disability, much like Dr. Hawking’s does, where beneath the seeming obvious physicality of disability resides the extraordinary nature of human potential. While our lives with disability may appear on the surface to be all about what we can’t do, our lives at a more core level should be about what we can do, proving strikingly counterintuitive in their successes – even surprising ourselves, at times.

A common thought process is that as our bodies lack abilities, our entire lives likewise degrade. However, again, disability proves amazingly counterintuitive, where when we fully utilize our intrinsic capacities, it often demonstrates that the less physical abilities we have, the more capable we are, where the weaker our bodies, the stronger our other assets – mentally, emotionally, spiritually. Disability as counterintuitive truly goes to the root of adversity, where intuition tells us that adversity defeats us, where in actuality, it uplifts us, where the more we face adversity, the stronger we become – that is, when we harness our fullest potentials.

A friend of mine recently asked me about the counterintuitive nature of my life. “How is it that, as a guy with cerebral palsy, bundled up in your power wheelchair, you have all this stuff going for you,” he asked? “You work like a maniac, you’re in better shape than anyone I know from working out, you’re always there for your daughter. Meanwhile, there are all these people with no physical issues, who don’t seem to do anything. It makes no sense.”

Of, course, from my disability perspective, the scenario that my friend presented makes perfect sense: It’s not how much we have, but what we do with what we have that counts, where the counterintuitive nature of life proves that if we have less, we can accomplish more. During his first two years as a student at Cambridge, Dr. Hawking wasn’t by any means a distinguished student; however, it was when his condition, Lou Gehrig’s disease, set in and progressed dramatically that his success in academics grew exponentially. Quite literally, rather than Lou Gehrig’s disease hampering Dr. Hawking’s education, it inspired it – as he seemingly had less in life, he accomplished more.

I’m always intrigued – sometimes amused! – when those without disabilities note the counterintuitive nature of our lives. I was waiting for some friends at a bar, and a woman next to me struck up a conversation. Surely, she had already had a few drinks in comparison to my absolute sobriety, and she quickly warmed up to me. After a few minutes of conversation, she noted that she had slept with many men in her years, and her all-time best lover was a gentleman who was a quadriplegic. “He seemed to somehow understand the power of physical intimacy more than any other man I’ve known, even though he had very little feeling from the chest down,” she shared.

I was certainly a bit blushed by her so candidly sharing her experience with me, but what she was really expressing was her recognizing the counterintuitive nature of disability, where someone with limited physical abilities can prove among the most skilled lovers. Again, what initially seemed like a deficiency, she shared, actually was a proficiency beyond all others – proving completely counterintuitive.

In our own lives, the counterintuitive nature of disability can often engage others, not only enlightening them, but inspiring them, as well. It can change the way they see themselves and the world around them for the better. Disability often unleashes the extraordinary potential within all of us, and when others witness the results, it’s inspiring to all.

Yet, it’s not so important that others universally recognize the counterintuitive nature of disability experience. After all, not everyone will have the insight to look beyond the superficial facade of disability in its most blatant physical form. However, it is vital that we, as those with disabilities, embrace the counterintuitive nature of disability, where we don’t merely focus an any negatives, but recognizing the corrilating positives and potential in our lives that also come with disability. This process is accomplished by recognizing that our physical limitations are always mirrored by positive potentials, and by focusing on counterintuitive nature of disability experience – that is, the positive potentials that are inherent within us all – our lives flourish.

Make no mistake, the fact that disability routinely adds more to our lives than it takes seems at odds with common sense. Yet, when we look around at those with severe disabilities living empowered, successful lives, where among the most challenged prove as among the most successful, the counterintuitive nature of disability experience proves the seeming impossible time after time: When we truly apply ourselves in living with disability, weakness strengthens, defeat empowers, and challenge elevates. Indeed, based on its intrinsic counterintuitive nature, disability doesn’t have to limit us – it can liberate us.

Miles to go Before I Sleep


By Mark E. Smith

Someone recently asked me, At what point does living with disability get easier?

My answer surprised him. “Surely it takes time to accept disability – and at some point, most are able to accept it as a part of their life, and move forward with an emotional stability toward it. And, in that way, living with disability does get easier. However, on a larger scale, if you’re living with disability to any degree of success, life should never seem easier,” I said. “The moment that life seems easier, you’re truly losing the battle, both toward disability and overall.”

As I went on to explain to him, living with disability is life, itself, where the easier it is, typically the less we’re striving. See, we only grow when we’re rising to challenges, and when we’re not striving, pushing ourselves to our fullest potentials, beyond our comfort zones, we aren’t moving forward and bettering ourselves. Truly, in order to take our lives to increasingly higher levels of success, it requires constant effort and sacrifice – and that’s anything but easy.

I highly value exercise, not just for the health benefits, but because it’s a metaphor and model for empowered living. I have a wheelchair-accessible gym, and if I were to do the exact same exercise routine everyday for months, it would become strikingly easy, but it wouldn’t improve my strength or endurance. Rather, to constantly improve my physical fitness, I must increase the intensity of my exercise routine week by week, where as the workouts get harder, I get stronger – and as I get stronger, I must intentionally make the workouts harder. This same process is how we grow and succeed as individuals with disabilities – that is, the farther we evolve in disability experience, the harder we should strive, never resting but constantly propelling. We must maintain momentum to keep our lives on track and flourishing because the minute we stop, our lives effectively stop.

The evolving process for most of us with disabilities, no matter if our condition stemmed from birth or later in life, began in a notably universal way: We strove to adapt to the physical realities of our conditions, then moved on from there, addressing the emotional, social, and other aspects of living with disability as we “grew.” Now, surely some get frozen in the initial stages of evolving with a disability, where a seeming lack of personal accountability and motivation hold them back from ever living a healthy life, getting trapped in a woe-is-me state of mind. And, it’s easy to point a judgmental finger at such a 28-year-old with a disability who collects SSI, lives with his parents, and plays video games all day, and note such shortcomings.

However, complacency likewise reigns among far too many of us with disabilities who seem quite successful. In fact, in evolving through our disability experiences, many of us reach some level of personal accomplishment, and then hit the cruise-control button, noting, I developed my physical abilities, went to college, built a career, and I’m raising a family – what else can anyone expect of me as one who’s overcome disability?

The answer is, a lot. Just because we may think that we’ve “succeeded over disability,” doesn’t let us off of the hook to keep working at it – and life. See, here is the fundamental fact that everyone from those with disabilities to the mainstream overlook: We never truly “succeed over disability,” where just like every other aspect of our lives, there’s always room for exponential growth. Any success in living with disability isn’t an end, but should merely lead to our next levels of growth.

As individuals, we need to be far less impressed by what we’ve accomplished with disability, and far more concerned with what we can and must accomplish to keep our lives moving forward. This isn’t to say that we should dismiss previous accomplishments; to the contrary, we should use them as inspiring precedents that motivate us to move our lives even farther forward. But, we shouldn’t slap our disability experience on the page and declare, Done!; rather, we should look ourselves in the mirror each day and say, Great, I’ve gotten this far, but now the work really has to begin!

Interestingly, this principal of not being overly conceded about past accomplishments, but focusing on future ones, applies toward those living with progressive disabilities, as well. It’s so easy to say, I’ve already coped with so much loss of abilities, now I have to cope with this next stage – it isn’t fair! Again, the way we move forward is not by holding on to the past, but by rising to our present challenges, propelling ourselves into them with all of our might. And, with a progressive disability, one better buy into the truth that forging ahead is the only way to succeed – and to retain a sense of control over one’s life! – or life will become a disparaging mess. Keep sending adversity my way because I will rise to it, not be defeated by it, is a strikingly empowered way to live.

Where our will to move forward begins – or, hopefully, continues – is by asking ourselves, What areas of my life do I need to focus on right now to move forward in real time? And, Where am I dropping the ball or not raising the bar high enough for me to keep striving?

What’s especially interesting about such questions is that they’re easy to ask, but extremely challenging to live up to. And, that’s the point: We have to hold ourselves accountable toward constantly growing, or our lives stagnate. We have to constantly question how we can improve our lives – in both the bleakest and most successful of times – and consistently live up to pursuing the answer with all of our might. Neither the worst nor the best baseball players further their careers by sitting on the bench – they both have to consistently take to the plate and swing the bat.

Since an adolescent, I’ve been asking myself such self-critical questions about how I can continually improve my life, and I’m always striving to live up to the answers. What I’ve learned first-hand is that when striving to live up to our fullest potentials, we never “overcome disability” – life never gets easier, nor should it. After all, when it comes to living with disability, we can always improve at it, just like in living the entirety of life, itself. Sometimes in improving with disability, it’s physically, other times it’s emotionally, and yet other times it’s mentally – but we always have room to grow and improve even further. In the process, whenever we feel like giving up, or fool ourselves into thinking that we’ve succeeded, let us remember that when it comes to living with disability, we must be humble and wise, knowing that our work is never done, knowing that we mustn’t allow life to get easier, but to remain challenging as we improve further – for, as poet, Robert Frost, put it best:

The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.

Facing Invisible Fences

By Mark E. Smith

Friends of mine installed an “invisible” dog fence, one where a wire is buried in the ground, and if the dog gets close to it, it safely shocks him via a collar, deterring him from crossing the boundary. My friends trained the dog well with the system, and for over a year, he stayed in its boundaries. However, one day, my friend came home to discover the dog lying on the front driveway, well outside of the invisible fence, sunning himself without a care in the world.

Of course, my friend presumed that the fence wasn’t working, and the installer came out to check the system. Oddly, all was working correctly. Wondering how the dog got out of the invisible fence, they decided to try an experiment. They placed the dog on the inside of the invisible fence, stood on the outside, and called the dog. At first hesitant, the dog then suddenly charged through the shock field, right to freedom. Sure, the dog was momentarily shocked by the fence, but he seemed to know that by simply getting past an instant of pain – and not being deterred by the prospect to begin with – he could go wherever he wished. Till this day, you’ll find that dog sunning himself on the driveway, his owners having given up on trying to contain him in the backyard – he set his own boundaries, and my friends have learned to respect them.

We should all take a lesson from that bold dog. How many boundaries – how many limitations in our own lives – are we refusing to overcome, not because we can’t, but because we simply don’t? How many of us aren’t living our best lives because we’re simply not willing to truly explore our potentials, thrown off by past experiences, fear of the unknown, or avoidance of potential discomfort?

Yet, here’s the bigger question that summarizes them all: How many of us are turning reasons into excuses? We all know that aspects aren’t right in our lives – maybe its our relationships, career, health, finances, or disability – but why aren’t we making painstaking, life-changing efforts to address them? Why aren’t we bursting through the invisible fences in our lives?

This past summer, I had to look at my own potentials, and once again question if I, myself, wasn’t turning a reason into an excuse? I was fortunate to have been in the midst of my best summer ever, with a boat on a lake, spending remarkable quality time with family and friends on the weekends. Water sports were big on my boat, from tubing at speed behind the boat to anchoring and swimming in glass-calm coves. Yet, week after week, while everyone else was in and out of the water till no end, I stayed in my wheelchair, behind the helm, never entering the water. See, when I was a child, I took swimming lessons, and my muscle tone and muscle spasms were so severe due to my cerebral palsy that I was instructed to never, ever enter the water again, for if I did – even with a life vest – I could easily drown, sinking like a rock. So, despite having a life-long passion for boating, I stayed out of the water my entire adult life – fearful of it based on my childhood experience and warnings.

Yet, this past summer, as boating days past, I wondered if I shouldn’t go into the water – that is, I wondered if I wasn’t turning a reason, cerebral palsy, into an excuse, my own fear of the water? I wondered if my not swimming was an invisible fence that I was simply accepting as one of my life’s boundaries?

Interestingly, as the summer went by, family and friends encouraged me to go into the water, and I explained to them that I couldn’t due to cerebral palsy – and they’d drop the issue, accepting the answer as a logical reason. But, I couldn’t accept the answer inside of myself. See, we can convince other people that reasons are reasons, but it’s much harder to convince ourselves, deep-down, that reasons aren’t excuses – it’s called shame.

Ask those in debt why they’re in debt, and their first reactions are usually to deny or minimize their situations. Debt is almost always based on a lack of personal accountability – spending more than one can afford – and there’s most often a sense of shame that goes with it, as shame occurs when we know we’re doing wrong, but keep doing it anyway. However, where the psychology of debt becomes really interesting is that it’s all about people turning reasons into excuses. After denial or attempted minimization, those in debt will almost always give you several seemingly logical reasons why they’re in debt when pushed on the subject: My car was old, so I needed a new one; we were expecting a baby, so we needed a bigger house; I had a rough year, so I deserved a vacation…. But, deep-down, most people in debt know why they’re in debt – that is, because they irresponsibly spend more money than they make. However, as long as they continue coming up with reasons as excuses – my car was old, so I had to buy a new one! – the dysfunction continues. Now, debt is one example of how using reasons as excuses holds us back, but it’s a component of most dysfunctions, and if we don’t stop using reasons as excuses in all areas of our lives, the courses of our lives never change for the better.

So, there I was nearing the end of the boating season, shameful in knowing that I was turning my reason, cerebral palsy, into an excuse for my fear of water. And, I knew that I had to address it – I had to live up to my potential, expanding my boundaries, crossing one of my invisible fences.

For two weekends in a row, I had swimming trunks laid out in the morning – and, for two weekends in a row I allowed fear to get the best of me, where I didn’t put them on, electing pants instead. Not wearing swimming trunks is yet another perfect reason – read that, excuse – not to go swimming!

The third weekend was the deal-breaker for me. I realized that I could easily keep using the reason why I couldn’t swim, cerebral palsy, as a lifelong excuse to never enter the water. Or, I could live up to my fullest potential, and push myself beyond my boundaries, overcoming my fear, taking the plunge into the lake. In an overly dramatic debate, I ultimately fathomed that the risk of drowning was far less of a consequence to me than living the rest of my life in fear, shame, and imposed limitations – that is, I’d rather take a so-called risk in a noble attempt to emotionally grow rather than live knowing that I couldn’t overcome my fear. I decided at that moment that I was going to stop turning a reason into an excuse, and simply force myself off of the boat, into the water. I was going to cross that particular invisible fence in my life.

I’ve pursued what some might kindly describe as brave accomplishments during my life, many out of pure necessity in living with disability. But, literally throwing myself off of my boat was among the most harrowing that I’ve ever approached. After all, I had built up decades of fear, and I had no clue what to expect when I hit the water. But, what was extraordinary was that once I crossed the point of no return – once I’d left the deck of the boat, and plunged into the water – fear immediately turned into liberation. No, the liberation wasn’t physical – after all, my body did tremendously struggle. Rather, the liberation that I experienced upon entering the water was emotional and psychological – I instantly knew that I had more control over the potentials in my life than ever before. As I thrashed about in my life vest, I was positive that the limitations in our lives truly are like invisible fences – they only hold us back when we refuse to cross them.

Surely, most of us turn reasons in our lives into excuses at times, where self-imposed complacency or fear keeps us from improving upon vital areas – relationships, careers, health, finances, or disability – not because we can’t, but because we simply don’t. However, if we are to move our lives forward, we have to take a lesson from that bold dog, and not just stare at our seeming boundaries in life, but charge through them with all of our might. See, what I’ve learned is that every excuse that we willingly remove from our lives – including those surrounding disability! – allows our lives to dramatically expand, and an amazing event occurs: We grow.

And, that’s the beauty of invisible fences – with honesty and courage, we can charge right through them, where our lives are no longer about self-imposed boundaries but about empowered liberation.

Stopping the Should’ve-Could’ve-Would’ves

By Mark E. Smith

Imagine for a moment that you’re driving a car at 55mph on the highway, with other cars traveling around you, with twists and turns in the road ahead. And, in a split second decision, you decide that you’re done looking forward, and you’re only going to look backward – foot still on the accelerator, cars all around, and twists and turns in the road ahead. Maybe your family is in the car, and they’re pleading with you in horror to look forward; but, you continue only looking backward, with no discretion toward what’s in front of you.

What happens next?

At best, if your family can get control of the car, you’ll stop on the side of the road, going no where till you realize the importance of looking forward. Or, at worse, you’ll cause a devastating accident, destroying yourself and everyone around you.

Living with disability can be a lot like driving a car, where as long as we look forward, all is notably well. However, the minute we choose to only look backward in life – on what should’ve been, could’ve been, or would’ve been if we hadn’t been effected by disability – life stalls at best, crashes at worst.

A buddy of mine, who received a later-in-life disability, is sure that his life would’ve been perfect if it weren’t for disability. According to him, he would’ve been rich, famous, and in love, but disability has single-handedly ruined his life, and all he wishes is to go back in time and avoid the accident that paralyzed him.

In one of my more blunt moments, I responded to my buddy’s pity party at dinner one night by stating, “You weren’t rich, famous, and in love before your disability, and I know people with disabilities who are rich, famous, and in love – so, has it occurred to you that your disability isn’t the problem here? You’re so busy dwelling in the past and resenting your disability that you’re overlooking all of your potential in the present. Stop looking back, start looking forward, and you’ll finally get somewhere.”

Of course, all of us with disabilities could look back on our pasts, and have pity parties for ourselves, no matter if our disabilities resulted from birth, a later-in-life injury, or a progressive condition. We can all assert that we got the short end of the stick, that if it wasn’t for damn disabilities we should’ve, could’ve, would’ve had the best lives ever. In fact, the best pity-party hosts, like my friend, will tell you exactly how much better their lives would’ve been, scene by scene – and, they should know, as virtually all of their time is spent dwelling in it!

Yet, here’s the problem: When one dwells in the past, the present becomes null and the future void. See, we ultimately only find progress in the present, the only point in our lives that we can control – if not physically, at least emotionally and mentally. However, one aspect of our lives that we absolutely can’t control is our past – and when we get stuck forever trying to somehow control it, like wishing to go back and change it, of course it drives us into depression and destroys our lives. Again, we can’t steer a car forward by looking backward – we crash every time – and the same holds true for life.

The other part of the disability puzzle that keeps some from moving forward is when they insist, This isn’t how it was supposed to be. No, disability may not have been what we wanted, but it’s what we got, and insisting that this isn’t the way it was supposed to be is an entirely futile, looking-back state of mind that’s irrational, to say the least. In my own life, as a young child, I figured out that although my parents pointed to a medical error as the cause of my cerebral palsy, believing that my disability wasn’t supposed to be, it was what it was, and I had to get with the program, as is, and move forward in the present. We can tell ourselves till our last breaths that having a disability isn’t the way it was supposed to be, but it’s only effect is trapping us in a past that we can’t change. However, the minute we look forward, to the way life is, then we’re in control, able to pursue positive directions.

In one of my books, I extensively discuss that life is about change, and if we’re ever going to live successfully, we must embrace change, not fight it. After all, like disability itself, change often occurs no matter our ideals, and if we go with it, we grow, and if we fight it, we stagnate. What’s intriguing is that disability demands that we embrace change if we are to live successfully with it. In fact, have you ever noticed that the very terminology of our physical disabilities – developmental, injury, progressive – instructs us to live in the present, not the past, suggesting how to best address the changes that they bring to our lives? Take a look how they spell out that embracing change and living in the present are paths for success:

If you have a developmental disability, what should you emotionally do as a person? Develop!

If you have an injury-related disability, what should you emotionally do as a person? Heal!

If you have a progressive disability, what should you emotionally do as a person? Progress!

This realization of how disability-related terms are fitting directives on how to grow with change came to me when considering a friend of mine who, for a decade, has had a steadily-progressive disability. Yet, he’s seemingly no better at coping with it today than at diagnosis. Again, he’s one who’s clung to the should’ve-could’ve-would’ves of his past, only looking backward. And, it occurred to me that he literally hasn’t kept pace with the directives of his disability. As his disease has progressed, he’s refused to emotionally progress with it, and has stagnated as a person. Whenever he speaks of how increasingly depressing his life is, I want to exclaim, Obviously – and it’s that way because your disability is progressing, but you’re not! After 10 years, my friend simply hasn’t developed any coping skills, and he never will – that is, unless he stops living in the past, and moves into the present to address the true potentials in his life.

Now, I’m not saying that there’s not a grieving period to disability – there absolutely is. For those born with disabilities, the teenage years can raise why-me? questions. For those with later-in-life injuries, recovery can involve only-if? questions. And, for those with progressive disabilities, initial declines in abilities can usher in what-if? questions. However, we must soon move beyond the grief stages – that is, we can’t allow ourselves to only look backward and hold on to the past forever. At some point, if we’re to succeed with disability – and, more importantly, life – we must shut off the should’ve-could’ve-would’ves, stop dwelling in the past, embraces change, and lives in the present, fully addressing what is.

As an Australian acquaintance of mine put it, You’re disabled, mate – get over it, then get on with it, and quit your bellyaching! His words are a bit more frank than I would choose, but he gets at the point: Let us let go of the past, drop the should’ve-could’ve-would’ve thinking, and move forward in the present, where we don’t stagnate because of disability, but we develop, heal, and progress all the better for it – thriving with what is.

…It’s That You Give


By Mark E. Smith

I recently had the privilege of attending our local fund raising gala benefiting the American Cancer Society. As I mixed and mingled, what struck me was that virtually everyone I spoke with was directly effected by cancer – many had been through cancer, and others were in the midst of treatment. All, however, had gladly paid the ticket fee, and were likewise bidding on items – that is, those effected by cancer were directly financially supporting the organization that helps those with the condition.

What occurred to me was that the cancer benefit was in stark contrast to benefits that I attend relating to physical disabilities, where there’s virtually no presence or support by those with the condition or other physical disabilities. In fact, at the last Muscular Dystrophy Association benefit that I attended, I was one of only three people with a physical disability in attendance among 200 or so individuals supporting the cause.

Interestingly, disability-related charities, like the MDA, have been cutting services in the past year due to dramatic drops in donations, and those with disabilities, ourselves, have been the first to become alarmed. The irony is, disability-related charitable funding is dwindling in large part due to our own blatant neglect as those with disabilities. When it comes to supporting disability-related charities, we, as those with disabilities, truly don’t financially support them – and it’s illogical. After all, our community is the one who benefits from such charities, so for us to allow them to fall by the waste side based on our own financial neglect is entirely self-defeating.

Now, you may be thinking, Mark, you’re stating an oxymoron. If we could afford to support disability-related charities,we wouldn’t need them in the first place. Disability charities exist because we’re a tremendously economically disadvantaged group.

And, such a statement is true – but only about half true. Approximately 33% of us with disabilities are employed, earning equivalent salaries to our able-bodied peers, some earning well into six-figure incomes. Yet, others with disabilities live on sizable monthly disability benefits, while others live on funds from legal settlements. No, not everyone with a disability is fortunate to have a meaningful income, but a segment does.

The question, then, becomes, why aren’t we, as those with disabilities, donating to our own community’s charities, especially those among us with incomes, rather than expecting the mainstream to do it – and worst of all, crying foul when they don’t?

Because we’re back to that I-got-mine attitude again, where it’s every person with a disability looking out for him or herself, with little thought toward our peers. But, that’s not how we make progress as a community. Rather, we make progress by supporting our peers when we’re in a position to do so, where we address our needs as a community, where we understand that when an additional person among us rises – through mobility, education, employment, housing, and recreation – we all rise a bit higher in the eyes of the mainstream. And, so supporting the charities within our own community – which is among our ultimate forms of self-empowerment – truly moves us closer to full social equality.

As those with disabilities, our formula for charitable contributions is a simple one: 10% of our pre-tax income should go to disability-related charities. If one earns $50,000 per year, one’s annual charitable contribution should be $5,000. That $5,000 would by two ultralight manual wheelchairs, dramatically improving the mobility of two individuals in need. That $5,000 could fund three residential access ramps, allowing three individuals freedom from the confines of their homes. That $5,000 could send nine children with muscular dystrophy to summer camp, a social experience that positively effects the rest of their lives. And, $5,000 would fund two communication devices, allowing two individuals to express themselves as never before.

Indeed, $5,000 is a great example because it shows what an enormous impact a middle-class income can make on others. By simply skipping that vacation and cutting back a bit on a few luxury purchases throughout the year, one family can make an immeasurable difference in the lives of many others. And, when one equips an individual with a wheelchair, ramp, or communication device, that individual is then able to better serve others, so an exponential growth of good work occurs, reflecting positively on all of our lives. That $5,000 “investment” in others can eventually build into $500,000 through the recipients’ good works paid forward over the courses of their own lives – that is, when you help someone, and they help someone, your initial investment keeps growing.

Of course, $5,000 is a specific dollar example, but 10% of one’s pre-tax income is the rule to live by. If one’s blessed with a $100,000 annual income, donating $10,000 to disability-related charities is great; but, if one earns $15,000 per year, $1,500 in donations is just as terrific. Even for someone just getting by on SSDI, saving $43 per month for charity sends a camper to MDA summer camp – that’s an enormously empowered, influential feat. And, time is money, too, where volunteering is also of tremendous importance – even if one can’t spare a dime, one certainly should be volunteering at a local center for independent living or MDA office or any disability-related charity.

So often people make charitable giving about finances. However, 99% of the time it has virtually nothing to do with our financial limitations, but everything to do with our priorities. And, as those with disabilities as a whole, we clearly don’t prioritize our finances toward supporting the charities within our community. I’ve mention some amounts that may startle some – as with if one makes $50,000 per year, one should give $5,000 per year to charity – but if one is living a financially-responsible life, and prioritizing serving one’s own community, donating 10% of one’s income is absolutely realistic. What’s more, those living on even the most limited means usually have some disposable income each month, whether it’s $30 spent on a video game, or $2 spent at the doughnut shop. Again, the ability to donate to a charity is rarely based on true financial limitations, but is based on our ability to prioritize how we spend our individual dollars, and it’s our obligation to prioritize our financial lives – skipping the video games or doughnuts, if required – so that we routinely contribute to disability-related charities.

While we should invest in others through charity simply because it’s the right way to live, we also gain in the process. An astounding benefit to charitable giving is that when we invest in others, we ultimately invest in ourselves, where our lives – almost magically and instantaneously – become brighter, more positive. The absolute fact is, the happiest, most content people that you’ll ever meet aren’t the richest, most famous, or most attractive; rather, the happiest, most content people you’ll ever meet are those who are truly dedicated to charitable giving. And, even the rich and famous state that the personal satisfaction of charitable giving trumps all in the end. Bill Gates of Microsoft, consistently among the richest people in the world, stepped down as CEO to focus full time on running his charity, donating $28 billion dollars to date. Gates has publicly stated that this is the happiest time in his life, and his wife, Melinda summarized their charitable vision, saying, “The premise of this foundation is one life on this planet is no more valuable than the next.”

In my household, I’m raising my daughter on a very similar charitable principle to that stated by Melinda Gates: We don’t purchase any luxury unless the exact same amount goes to charity, period. If my daughter wants to fly down to visit her great-grandfather during spring break in West Palm Beach, Florida, for golf lessons, her trip won’t cost $300, but $600 because the $300 cost of her trip has to be matched by an equivalent $300 charitable donation. And, I’m held to the exact same standard. We don’t get any luxury unless we contribute to others in the process – and if we can’t afford to match the luxury with a donation, then we simply don’t get the luxury. Although this means of personal charitable giving may seem over-the-top to some, it makes living an equitable life in consideration of others extremely simple.

I don’t know what your financial capacity is as one with a disability, but I do know that our community’s charities need your help. If you’re fortunate to be gainfully employed or have a meaningful income, a minimum of 10% of your pre-tax income should be going to charity. Or, even if your finances are a challenge, a few dollars or volunteering your time can make a tremendous difference in the lives of others. If you have a lot, give a lot, and if you have a little, give a little. And, in the end, that’s what it’s about: It’s not what we give to others that counts; rather, it’s the mere fact that we give to others that makes the biggest difference within our community.

Sometimes it is 23 Instead of 13

parenting
By Mark E. Smith

This fall ushered in tremendous changes for me as a father. With my daughter now reaching 13, she’s unmistakably growing up. In our school district, junior high and high school are consolidated into one, so I literally went from waiting for the elementary school bus each morning with my daughter last year to dropping her off at the high school on my way to work this year. Over one summer, it seems that my daughter went from a child to a teenager. In fact, she did.

To her credit – and my saving grace so far – my daughter has been handling her transition extremely well. Despite all of the distractions – from learning the ropes at “high school,” to being a member of Drama Club and band, to a booming social life – she’s done extremely well during the first grading period and continues dedicated and responsible in our home life, as well.

This past Halloween was another hallmark for me as a father: It was the first year that I didn’t take my daughter trick-or-treating. Instead, she chose to go out trick-or-treating with her friends, supervised by a few mothers. As one of the mother’s Volvo station wagon pulled away from our house – carrying my daughter dressed as Bat Girl, and too many of her friends in costumes to identify – I was both proud and a tad nostalgic as I sat in the doorway, waving goodbye.

At 9:30pm sharp, as planned, my daughter’s friend’s mom pulled up in our driveway – kids flopping out every window with energy – and when I opened our front door, there was my daughter on our front porch, with her friend, Marc.

I noted Marc’s supposed-to-be-scary costume – an escaped zombie convict – then waived to everyone in the car, my daughter all wound up, rushing past me, talking about the sights and stories of the evening, plopping her bag full of candy on the kitchen table. As I closed the door and turned off the light in our foyer, the thought hit me: Did a “boy” really just walk my daughter to the door?

He sure did. And, as a father, it’s part of my job – along with guiding and communicating – to accept that my daughter continues growing up. No, my role isn’t to let go by any stretch – as at 13 through college, my daughter needs my guidance and boundaries more than ever – but I need to realize that I’m dealing with an evolving person, and just as my daughter grows, so must I.

Parents and their children with disabilities go through the same journey as my daughter and me – one of a child’s growth toward autonomy – but often at a much later age. The reality is, based on social stigmas and physical limitations, many of those with disabilities don’t begin exploring social experiences and autonomy till much later in life – often, not until their 20s or older – and that fact can dramatically complicate the boundaries that exist between parent and child.

For many teens with disabilities, they simply aren’t as socially active as their peers. Stigmas toward disabilities still remain, where teens with disabilities can be somewhat isolate from a wide scope of peers, and physical limitations may restrict how readily teens with disabilities interact with their peers – I know that as a 13-year-old with cerebral palsy who used a wheelchair, I couldn’t run off with friends in their moms’ Volvos like my daughter can. Further, parents and relatives of teens with disabilities can be understandably overprotective at times, creating an upbringing where physical care and disability-related needs eclipse socialization and autonomy. As hard as it is for those of us with able-bodied children to allow our children to grow up, it can be even more emotionally harrowing for parents of those with disabilities.

As a result, many with disabilities don’t begin to explore their true independence until they are in their 20s, most often facilitated by peer groups who are more accepting at that age of those with disabilities than when everyone was in their teens.

The question then becomes, how do both the parent and the child with the disability deal with the child’s late explorations of socialization and autonomy? After all, it’s one thing to set a 9:30pm curfew for an able-bodied 13-year-old where the parent and child roles are clearly defined, but how do a parent and child with a disability cope with such a situation when the “child” is 23?

The answer is, both the parent and adult child with a disability must be especially cognizant of the situation. The fact is, an adult child with a disability who’s lived a notably sheltered life is not emotionally a teenager or an adult, but somewhere in-between. Most teenagers develop peer socialization incrementally, and that slow, boundary-setting process evolves one’s decision-making skills based on years of social experience – it builds the protection mechanisms of judgment over time. Put simply, healthy teens don’t go from junior high to a drunken fraternity party overnight; rather, they gain social experience slowly, from hanging out with friends to dating, progressing year by year toward more mature social experiences, which then gives them judgment at hand when needed.

Yet, some with disabilities can find themselves with very limited social experience until, say, college, where they are suddenly in very adult situations, without the prior social experience needed for proper judgment. In this way, outsiders who say that a parent of a 23-year-old with a disability shouldn’t be concerned or involved in the adult child’s decisions may be overlooking the reality that the 23-year-old may still be developing his or her social experience and judgment, and requires a guidance that his or her peer group typically does not at such an age. Therefore, those with disabilities – and outsiders, as well – sometimes need to recognize that what may seem like an overbearing parent may, in fact, be a parent who’s especially wise and well-meaning, recognizing that the adult child with a disability still needs guidance at an older age.

Of course, a wise and well-meaning parent of an adult child with a disability must also recognize the importance of allowing his or her child to develop autonomy during the teen and young adult stages. Again, it’s easy for parents to hang on to the role of caregiver and guardian of a child with a disability so tightly that they overlook the child’s necessity for social experience and autonomy well into their child’s adulthood. However, as a parent of any child, while we must first ensure our child’s general safety, we must also allow his or her personal growth within appropriate boundaries, letting him or her earn his or her independence from us one decision at a time, disability or not, 13 or 23.

Interestingly, adults who acquire a later-in-life disabilities and their parents can find themselves in a similar circumstance, where boundaries and roles can revert to a very parent-child relationship, even though the adult child may be, say, 40. It’s a difficult situation when an adult child returns home with a disability, needing parental care. How, then, does an autonomous adult re-merge with his or her parents’ household, and how do the parents accept the adult child’s entirety of adulthood while providing physical care and emotional support?

In two words, it’s difficult. However, it’s not an impossible balance. Again, boundaries must come into play. The adult child must recognize and respect his or her parents’ concern and love, while the parents must likewise recognize and respect the adult child’s autonomy. Surely, a parent-child dynamic will always be present, but boundaries of adulthood – peer-to-peer – must be maintained, as well.

Mutual respect and boundaries, then, are vital between parents and adult children with disabilities, no matter if it’s life-long or later-in life disability. And, in my experience, when mutual respect and healthy boundaries aren’t maintained, the consequences can be catastrophic to all individuals involved. I’ve known many young adults with disabilities who, due to lack of social experience, and against good judgment and parental advice, have landed themselves in very harmful situations, from as common as simply making poor life choices, to as severe as being in abusive romantic relationships based on unresolved disability-related social insecurities and naivety. I’ve also known parents so overly involved in their adult children with disabilities’ lives – such as showing up on the child’s honeymoon – that they’ve either stagnated their children’s emotional growth, or destroyed the parent-child relationship altogether. Therefore, it’s critical that families address the realities of a child maturing with a disability via great awareness, where both the parent and adult child recognize their own roles and boundaries, as well as respect that of the other person.

Certainly, teens and young adults with disabilities are just like all others – they are diverse, where some socially mature sooner, while others later, some mastering social intuitiveness, while others struggle, needing guidance. However, it’s vital that both adults with disabilities and their parents recognize that there can be delayed social experience based on disability – due to physical limitations and remaining social stigmas – where one with a disability may still require responsible parenting into one’s young adulthood and beyond. For these reasons, when we hear of a young adult with a disability struggling to gain autonomy from his or her parents, let us not merely write off the parents as overbearing and unreasonable, but let us wonder whether the young adult truly has the social experience to appropriate handle a given circumstance? After all, it could simply be that the parents are wise enough to know how to best guide their child into adulthood, with the ultimate goal of healthy autonomy, no matter if it’s at age 23 instead of 13.