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.

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.