Never In-Between

By Mark E. Smith

I had a lot of respect for Vic – that is, until he downed a fist full of muscle relaxers on December 23, 2009, at age 45, dying two days later in the hospital, surrounded by his horrified family and friends on Christmas Day. Now, I’m just sorrowful.

The back story to Vic’s suicide would have made the actual event less surprising – but, Vic had to throw in a final torturous twist to those who loved and admired him. See, it was no secret that since the car accident that left him a quadriplegic at age 18, Vic wanted to die – at some points more than others, where lows in his life were punctuated by suicide attempts. And, in that context, Vic’s suicide would have been viewed as his finally succeeding at his long-time wish – popping a bottle of pills, checking out once and for all. End of story.

But, in the time just prior to his suicide, Vic Chesnutt made it known that he was finally past wanting to die, that one of his latest songs, “Flirted With You My Whole Life,” was his letter to the world that he finally wished to live, that suicide was behind him. And, the lyrics read true to his word:

I am a man
I am self-aware
And everywhere I go
You’re always right there with me

I’ve flirted with you all my life
Even kissed you once or twice
And to this day I swear it was nice
But clearly I was not ready

When you touched a friend of mine
I thought I would lose my mind
But I found out with time that
really I was not ready, no no

Oh, Death
Oh, Death
Oh, Death
Really, I’m not ready

In a November interview, just weeks before his suicide, Vic discussed his now-prophetic song with NPR: “Well, it occurred to me that I would like to sing this song where, at the first half of it, you think I’m singing it about a lover, and then it becomes obvious that I’m singing about death. Death is my lover…. You know, I’ve attempted suicide three or four times. It didn’t take. And, this is really a breakup song with death.”

So, Vic made the rounds in summer and fall 2009, describing himself publicly as a man who’d learned his lessons and grown – and he was arguably at his peak in the music industry. No, you may not have heard of Vic Chesnutt, as he never achieved Billboard-type success or radio airplay in rotation. But, for 20 years, Vic was a musician’s musician, idolized by contemporaries like Michael Stipe of R.E.M., Madonna, and even alternative bands like Garbage. As an indie artist, Vic was known for his true talents as a writer, singer, and musician with longevity – which commands more respect among many in the music industry than one with a sole Top-40 hit. And, Vic was a relentlessly-working musician, always writing, always recording, always performing. As a lyricist, his work wasn’t from the soul, but it was the soul, itself – the trials of humanity at its core.

Despite Vic’s professional success, many still believed that Vic’s personal life was tortured and tragic, his disability a cross to bear, a seemingly horrible plight that they have ultimately used to justify his suicide. One of Vic’s fans wrote, “I am not sure that Chesnutt’s death is tragic. Maybe it was his life that was tragic. But before he left, he blessed us with a poignant firsthand picture of that tortured existence. Anyone who would judge his last act should realize that they never walked in his shoes – or sat in his chair.”

I’ve known many who have sat in wheelchairs as Vic Chesnutt did – some with physically and socially tougher plights than his – and they didn’t take the sorrowful way out by overdosing, devastating all around them. Why, then, did Vic choose at this point in his life to commit suicide, once and for all?

My speculative answer from what I knew of Vic, from what I’ve since learned of Vic, and from what I’ve witnessed and experienced in my own life, is that I believe that the unique pressures of living ultra-successfully with disability caught up with him, where he wasn’t able to cope with the extreme fluctuations in his life. See, when you have an exceptional level of success like Vic did while living with a disability, it can become a tale of two cities. On the one hand, publicly, everyone’s telling you that you’re a huge success and inspiration, putting you atop the world. Yet, on the other hand, you’re a real person, with real-life issues toward health, relationships, and finances. And, when all isn’t kept in balance, you can go from extreme highs to extreme lows in literally a matter of moments – in the time it takes to go from on-stage in front of a cheering crowd to a lonely hotel room where you’re left to face the realities of your everyday life. Truly, when you have such extremes in life – and you’re emotionally unable to center yourself – it’s just as easy to get consumed by the lowest of the lows as the highest of the highs, where the healthy middle-ground needed to survive doesn’t exist.

And, that’s where the tragedy in Vic Chesnutt’s life occurred – not in his literal disability, but in his inability to find that middle ground of understanding and comfort in life as a whole, where, by all accounts, he lived a tormenting oscillation between the highest heights of elation in his work, and the deepest plunges of despair in his personal life, with no middle ground to just be at peace.

Indeed, Vic left us with a remarkable catalog of the human experience as voiced through his music. And, maybe as some have pointed out, his suicide – that is, his final choice – isn’t to be judged by anyone. Yet, I can’t help but think that Vic called it quits too soon, never to find his middle ground, as when we find it, we realize that while life can be full of ultra-highs and super-lows, all of it is of value, never to be squandered, and relished everywhere in-between.

Author’s Note:
I wish to include the following two videos of Vic that personify him better than any writing can. The first video, “Everything I Say,” demonstrates the Earth-moving force that was Vic. The second Video, “Flirted With You All My Life,” is, in many ways, Vic’s prophetic letter to the world regarding his ultimate act of suicide. When you watch the videos, I think you’ll be left speechless, simply wondering what many of us wonder: How does such a life force just cease? …Or, maybe it doesn’t.

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.

Shooting Hoops in the Rain

By Mark E. Smith

One of my favorite quotes is, “The true measure of a person’s true character is the effort that he or she puts forth when no one is looking.”

I often chuckle to myself when people note that they know how busy I am…. In fact, very little of what I do is ever publicly seen or known by even those close to me. No, I’m not bragging that I’m even busier than I appear, but despite what’s seen by others, much of my work is accomplished very quietly, in my solitary offices at work and home, helping individuals directly, behind the scenes. After all, when someone needs our assistance, we shouldn’t call out the trumpets, broadcast on the Internet that we’re helping someone, then run to our bosses for praise. Rather, when someone needs our assistance, we should quietly, immediately help them, understanding that our only reward is in the difference that we hopefully make in that one individual’s life. Whether anyone knows of our efforts is meaningless, and our only concern should be, Did I do everything that I could to help that person, and did I live up to my fullest potential in my servitude to others? The objective, then, isn’t to “look busy” to your boss or others, but to accomplish true achievements.

Much of my work ethic of giving my all when no one’s looking truly stems from my own disability experience. Much like you may have experienced in your own life with disability or other challenges, the foremost hardships of my living with cerebral palsy haven’t been the obvious ones that most people publicly see – that I can’t walk, that I have muscle spasms, and so on – but my far more intimate everyday struggles that no one ever sees, as with my simply struggling to open a beverage in my kitchen at night, or fighting to put on my shoes each morning.

However, what I’ve learned from my own life is that addressing such private struggles – when no one is watching – is where true tenacity and dedication are formed. Put simply, how we react to our disabilities when no one is looking is our true character, our authentic self – and a fundamental toward success in all of life.

I’ve known far too many individuals with disabilities who bask in the limelight, glad to portray a heroic persona in public, thriving off of recognition as “overcomers.” Yet, behind closed doors, their lives are a mess, privately filled with bitterness, defeat, depression, and addictions. Their heads are held high when others are watching, but all crashes when they’re alone. In ways, disability experience is a lot like celebrity, where what’s publicly seen isn’t always what’s privately lived.

Yet, if one’s going to truly succeed with disability, what’s privately lived must be paramount to all other views. Again, our true character is proven when no one is looking. It’s easy to accept disability when someone is telling you that you’re an inspiration. Yet, it’s a far more honest reality – dare I say, brutal reality – when it’s just you, in your kitchen, struggling with all your might for twenty minutes to open a beverage. How do you feel in those circumstances? Are you heroic for yourself, or do you become quickly discouraged and defeated, crumbling into a ball of self-pity?

If you’re playing your disability A-game, you should feel more energized and inspired when facing private struggles than if you were on television with millions of people applauding you for your inspiration. See, when you have the tenacity and dedication to tackle a personal challenge with all of your might when no one’s applauding – because you only want the self-satisfaction of giving life your all – that’s the character that true heroes and champions possess.

In fact, one might compare being a champion at disability like being at champion at sports. Millions of teenagers every year dream of becoming a sports champion and hero. However, the mere handful who have achieved such status over the decades all shared the same trait of having practiced their game on a lonely court or empty field long after everyone else went home, year after year. Basketball Hall of Fame player, Larry Bird’s, ritual as a teenager was shooting 500 baskets before school each morning; then, he shot baskets in-between classes; and, then he shot baskets late into the night. What’s more, Larry’s home life during that time was a disaster, living in poverty, his father an alcoholic who committed suicide. But, when it came to basketball, Larry didn’t need a screaming crowd, encouraging parents, or a sunny day; all he needed was a basketball, a hoop, and his tenacity and dedication. Lots of Larry’s peers had talent on the basketball court, but none had Larry’s dedication when no one was looking – and that solitary dedication ultimately took him all the way to the Hall of Fame.

Succeeding with disability is no different. The public can commend you, your family can encourage you, but if your strength doesn’t come from within, where you’re willing to work to exhaustion emotionally, mentally, and physically to better yourself when no one’s looking, day after day, your success will be limited. You need to out-shoot Larry Bird by practicing morning, noon, and night in your own life to succeed with disability.

I’m not embarrassed to tell you that among my own foremost solitary challenges is the commode. See, I have a very hard time transferring from my wheelchair to the commode, then back again. It’s been a lifelong challenge, one that I’ve battled alone since I was a teenager. Truly, among my foremost goals everyday is a seemingly simple but profound one: to “beat the commode,” successfully transferring on and off of it. And, let’s face it, when one of your foremost challenges is to simply perform a commode transfer, that’s living with true authenticity, a challenge where most reckon you’re better off tackling it alone!

These days, fortunately, I win more than I lose, but that transfer remains harrowing, and gets the best of me from time to time, tossing me onto the floor like an unworthy opponent, leaving me to climb back into my wheelchair in defeat, bumped and bruised. In my mind, though, that transfer is among my greatest ongoing inspirations, reminding me to never be intimidated, to never give up, to apply even more tenacity when times get tough. And, I tell myself, Dude, if you can accomplish that transfer, everything else in life is a piece of cake.

The mobility industry, public speaking, and writing are all challenging and rewarding for me; however, when it’s just me addressing my disability-related challenges alone, that’s where life really demands that I prove myself with authenticity. Indeed, it’s that sense of solitary accomplishment that we get from tackling very personal challenges when no one is looking that builds our true confidence. And, when you strive to tackle them, without any fanfare or overt reward, when no one knows of your vying and victories but you, that’s what builds true character, that’s what forms a true hero, that’s living with authenticity. An old boxing saying goes, champions are made outside of the ring.

When it comes to living with disability, be that champion outside of the ring, be that kid shooting hoops alone in the rain, be the one never defeated by the everyday challenges of disability but motivated by them. Forget about everyone else – you don’t need their recognition to be your best! – and truly live your tenacity, dedication, and authenticity every day, not just surviving with disability but to truly thriving. That is, never stop showing your disability the character that you’re made of, especially when no one’s looking.

Confining Ourselves: Where’s the Outrage?

By Mark E. Smith

Many of us involved in disability advocacy dream of a day when those with disabilities in the U.S. unite and form a serious, influential constituency – one much like the NAACP or AARP.

See, as those with disabilities, if we simply united as a body of millions, solidifying our collective voice on a national level, issues like detrimentally-low mobility and in-home care funding would be resolved in an instant – our influence on elected officials would be so great that they’d address our needs to no end. It really would be that simple – no rocket science or mountain climbing involved.

Yet, let’s be blunt about our current state: As those with disabilities, we remain a fragmented population of uninvolved individuals across the nation. What we are, is non-vocal as constituents, and what we aren’t is recognized by our elected officials and the mainstream at large. Even the so-called disability groups – as much as they boast efficacy – remain tiny, unknown, and off of the map on Capitol Hill, with arguably no political power. Everyone knows the NAACP, AARP, and even the NRA. No one in the mainstream can name a national disability rights organization, nor can most individuals with disabilities. Why is that?

Further, with the power of the Internet – linking those with disabilities across this nation from their own homes, with the click of a mouse – how is it that the top disability websites remain minuscule in visitors compared to even niche mainstream communities on line, where a single car or video game forum gets many times more posts each day than all of the disability-related forums combined? Why is that?

Why is it that everyone from gun owners to video gamers are dramatically more unified than those with disabilities, especially when those of us with disabilities have so much at stake – from health care to socio-economic equality?

Indeed, Why is that? is the question that we, as those with disabilities losing the national battle to be heard, should be asking ourselves today. Why is it that after four decades of advocacy, those with disabilities remain fragmented from the mainstream, vacant from the political process, and isolated from each other?

Our ongoing overall fragmentation as a community comes down to one fundamental answer: As individuals with disabilities, we’re so consumed with our own personal self-interests that we don’t summons the will or energy to consider the needs of our peers or the value of a “collective disability community.” Put simply, as those with disabilities, we’re so self-centered with our individual lives that we don’t care what’s happening to others with disabilities around us.

Now, that sounds like a critical statement, but it’s not; rather, it’s an insightful one. See, most of those of us with disabilities aren’t self-centered by nature, but by necessity – and that fact has contributed to our lacking collective power as a community.

As we sit here today, those of us with disabilities continue facing bleak realities in the U.S.:

• Those with disabilities are 1/2 as likely to have completed high school, and only 1/3 as likely to have a bachelor’s degree, as those without disabilities

• Adults with disabilities are almost 3 times as likely to live in poverty as people without disabilities

• 62% of those with disabilities are unemployed

• Only 7% of those with disabilities own their own home, compared to 69% of the general population

Those are strikingly grim statistics, and what they point to is the fact that many with disabilities – arguably, 2/3 – are in a daily struggle for individual survival. And, as much as we’d like to tout a one-for-all ideology that unites those of us with disabilities in our struggles, it simply doesn’t happen. The fact is, many with disabilities are so consumed by their own individual struggles that they can’t summons the capacity to unite and fight in others’ interests. In very real terms, when one has ALS, and is struggling for attendant care and equipment funding – not to mention facing the emotions of the circumstance – it’s unreasonable for anyone to expect him or her to be on the front lines of disability advocacy for others.

And, this is where many overlook the critical difference between a powerhouse lobby like the AARP versus those with disabilities failing to unite. The average AARP member has attended college, has a household income over $50,000, owns one’s home, and is married with children, in good health. Such a constituency demographic as those belonging to AARP truly have the time, energy, and resources to dedicate toward supporting their community at large. Again, this is a striking contrast to those with disabilities who struggle for basic necessities on a daily basis. You can’t save others when you’re trying not to drown.

Yet, no matter the valid reasons of why those with disabilities fail to unite, the truth is undeniable: If those of us with disabilities are to ever gain an influential voice in the U.S., we have to unite. We have to put community before ourselves, and recognize that efforts toward a collective voice and goals will ultimately serve us better than simply caring for our own individual needs in the immediate.

I’ve witnessed a striking example over the last decade in my roles in the mobility industry of how those with disabilities unknowingly invest in their own individual self-interests, ignoring the needs of others with disabilities, to the detriment of all involved. Everyday, I work with individuals struggling for wheelchair funding. And, what’s telling is that while those in need of wheelchairs are frustrated during the funding process, once they have their own new wheelchairs, they disappear into the sunset, exhibiting seemingly zero concern toward their peers’ similar struggles. That is, most wheelchair users demonstrate no regard for addressing the system at large that’s harming those with disabilities. I got my wheelchair – that’s all that matters, is the message that many with disabilities indirectly convey, and the same short-sighted attitude is applied to attendant care funding, access to health care, and so on.

As a result, those with disabilities continue losing vital resources. For example, since 2005, power wheelchair funding has been cut by 39.78% – and only covers models for in-home use. While these facts are clearly unacceptable, many individuals with disabilities truly don’t seem to care, remaining silent on such issues. Of course, those with disabilities who were simply glad to get their own power wheelchair in previous years are now finding the funding climate even more challenging as they struggle to get a new one – and apparently accepting less and less is fine in their minds. Inaction speaks louder than words.

However, for our community as a whole, such I-got-mine thinking is leading to a doomsday climate: An overall lack of accountability by those of us with disabilities to advocate for our needs is eroding access to even basic services. Currently, there’s proposed legislation to further devastate mobility funding via a tax, but few with disabilities have spoken against it. Similarly, positive legislation like the Community Choice Act for increased in-home care funding is vital to those with disabilities, but few with disabilities have spoken to support it. Our lack of voice tells legislators that we’re passive at best, and willing targets at worst. Capitol Hill can do what it wishes, knowing that we don’t advocate for our own interests.

But, imagine if, in 2005, those individuals with disabilities didn’t just say, I got my wheelchair – that’s all that matters, but they had actually said, the system’s failing us – let’s collectively fix it. …Imagine if 10,000 wheelchair users had gathered on Capitol Hill – like the NAACP, AARP, or NRA would do – and brought awareness to the issue of mobility funding. The power of our collective voice wouldn’t have been ignored, and we would have better mobility and in-home care funding today than ever before in U.S. history.

At this writing, a national issue is currently that the U.S. Preventative Services Task Force recommended changing the schedule for routine mammography screening for women, raising the starting age from 40 to 50, and changing the frequency from annually to every 2 years. Upon this news, within minutes, women’s advocacy groups blanketed the media and their elected officials with voices of outrage, that while the recommended guidelines may save toward health care costs, they’d likewise risk the health of millions of women. Within hours, women’s outrage made every news outlet, where one couldn’t pick up a newspaper, turn on television, or log onto the Internet without being aware of it. The story of how the task force’s recommendations would jeopardize women’s lives became a national issue within 24 hours – and it all started with women voicing their outrage. At this point, it’s unlikely that the recommended new guidelines will go any further than a mere proposal, namely because women simply aren’t allowing it.

By stark contrast, the overwhelming majority of those with disabilities – dare I say, 99% – remained totally silent and disengage in collective change when a 3.27% mobility funding cut was proposed in 2005, then a 27% cut in 2006, then a 9.5% cut in 2009. As those with disabilities, we did nothing to stop the proposed cuts, and all were enacted – and, make no mistake, every individual who relies on insurer funding for mobility products has, is, or will suffer because of our refusal to protect our own interests. It’s disheartening to admit, but when one looks at the cuts in services – from mobility funding to in-home care – we’ve truly done this to ourselves. Inaction is a form of consent.

Now, you may be thinking, Mark, in several paragraphs, you’ve gone from excusing those with disabilities because the socio-economics are so grim, to faulting them for inaction and a lack of accountability – which is it?

My answer – read that, the disability community’s answer – is that it’s both. Yes, as individuals and as a community we face valid hardships, but we can’t continue using them as reasons not to address the larger importance: We have no collective voice in the 21st century. And, until we, as those with disabilities, learn to look beyond our own individual self-interests, and pursue a collective voice, our socio-economic and political status will never improve. We, based on our own daily complacency, will indefinitely hold ourselves hostage as a fragmented, rarely-heard community, where we allow ourselves to be stripped of services, one by one.

The vital call for action is clear: Get involved as an individual. When you encounter an issue that needs addressing, don’t simply skirt around it for yourself; rather, sound the alarm bell for the greater good of all with disabilities. Going back to my example of reduced mobility funding because those with disabilities have ignored the issue at large, if every individual who struggled with Medicare and insurer funding of wheelchairs simply wrote to his or her congressman, thousands of letters would pile up in a matter of days, forming a collective voice that couldn’t be ignored. If your elected representative in your sole congressional district received 100 letters from constituents next week sharing their mobility funding horror stories, he or she would take exceptional notice – the collective voice would inform and alarm everyone from the representative to the national media that change is needed in real time. And, change would occur.

You may have overcome the hurdles to get your own new wheelchair and in-home care, to name two necessities; but, now your obligation is to help your peers get theirs, and to ensure that the next time that you’re needing vital resources, they’re easier to get, not harder.

As an individual with a disability, you need to move beyond your own hard-luck story, and join others to address issues at large – become part of a rallying of the troops. Write to your elected officials regarding the struggles of obtaining vital resources like funding for mobility and in-home care, be an engaged member in on-line disability communities for change, and encourage others with disabilities to get involved with you. You need to stay informed of the pressing issues of today – the Community Choice Act toward in-home care, Medicare cuts in catheter coverage, and the proposed further cuts and taxing of wheelchairs, to name just three issues – and get involved as a voice of advocacy. That is, live up to your obligation to be a contributing member to the disability community at large.

No one likes to hear the discouraging facts, but, as individuals with disabilities, we’re statistically failing ourselves in the U.S. today. Let us stop viewing our community’s grim socio-economic realities as valid exemptions, and see them as imperative reasons to rise up – as individuals, as peers, as a community, as a collective voice of millions – and usher in the political and social change that we’ve neglected for four decades, but are unquestionably capable of achieving in all but an instant.

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.