Living with disability – Page 13

From Suitcases to Slates

Holding on is believing that there’s only a past; letting go is knowing there’s a future. -Daphne Rose Kingma

By Mark E. Smith

We all know that we can’t physically be in two places at once, so what makes us think that we can do it emotionally? Or, more specifically, what makes us think that we can thrive in the present while dwelling on the past?

We can’t. Just as we can’t physically be in two places at once, emotionally we can’t dwell on our pasts and thrive in our presents. Yet, how many of us try or have tried or know those who have tried. But, in the end, we must pick one: are we going to dwell on the past or live in the present – we can’t have both, and if we try to juggle both, it will destroy us and often hurt those around us.

In my line of work and life, I see it every day. I’ve even lived it. In the disability realm, I encounter those so longing for their pre-disability pasts that they can’t see the value of all around them in the present. In relationships, I encounter those so bitter about an ex that they’re blind to the life-changing love in front of them. In the work force, I encounter those so resentful of a career lost that they won’t pursue a new career. And, I see adults so enveloped by the pain of what they experienced as children that they’re incapable of parenting their own children. Every day, I see people pretend to live in the present, but truly living in the past. And, when we live in the past, we’re not living at all. We’re simply reliving a story that will never change.

And, that’s the difference between living in our pasts versus living in our presents. When we live or dwell in our pasts – even if they were great – there’s no potential or hope. The past is frozen, never changing, and it freezes us, preventing any chance of moving our lives forward. You cannot move forward when focused on the past.

However, living in the present is the opposite – that is, it offers potential and hope, where virtually anything is possible.

Want to sabotage the rest of your life? Bring a packed suitcase of the pain from the past wherever you go. Want to live the life of your dreams? Live with an unguarded slate that’s available for all to leave loving inscriptions.

Nevertheless, living in the past can prove successful in one profound way: avoiding accountability. If you focus on how great your life was before acquiring a disability, you can find every excuse not to make the most of yourself now. If you focus on how your heart was broken in your last relationship, it gives the perfect excuse not to let love into your life now. If you focus on your long lost job, it gives the perfect excuse not to look for a new job now. And, if you focus on how dysfunctional your childhood was, it gives the perfect excuse not to be a great parent now. Living in the past is great because it makes you a forever victim, and victims aren’t held responsible. Of course, this mindset is completely self-defeating – and usually hurts those around you, too – but if you truly want to ruin your life, and accept no accountability, dwelling on your past is a dysfunctional person’s dream come true. You mean, I can ruin my life, hurt those who truly love me, and do it all with no sense of accountability – awesome!

With so many among us unsuccessfully trying to live in the past and present at once – which we know doesn’t work! – how do we go through the process, then, of moving beyond our past to relishing our present? Well, that’s just it, it’s a process, a literal movement. Just as we must physically move to go from one place to another, we must do the same with our emotions in a healthy process. And, “process” is the operative word. We must address and heal from the past, and that will bring us into the present. Let’s address what was, and move into what is. By accepting the past, and recognizing that potential and hope only are possible in the present, we go from surviving to truly thriving, achieving the levels of success, contentment, and love that we all deserve.

As my friend, W. Mitchell puts it, “Have you ever noticed that windshields are much larger than rear-view mirrors?” …There’s good reason for that in cars – and even more so in life.

Enough As-Is

The hardest challenge is to be yourself in a world where everyone is trying to be somebody else. ~E. E. Cummings

By Mark E. Smith

I joke with my friends that when I look in the mirror, others look back, complimenting me on my hair, but also warning me that squirrels are out to get me. As a result, I like my hair, but I’m paranoid of squirrels!

When you look in the mirror, do you like what you see? When you’re in public, are you comfortable in your own skin? Do you not get nervous speaking in front of groups? Or, even bolder, when you’re around your significant other, are you comfortable being nude, feeling beautiful or handsome or sexy?

I hope for you, the answers are all, yes. However, so many struggle with self-image. In pop-culture, the buzz word is body image, where we know how so many feel physically inadequate compared to airbrushed models in magazines or ripped movie stars. Yet, the issue is far more profound, as we know that the body, itself, is totally superficial, easily manipulated with clothes, cosmetics, plastic surgery or photo editing. Of course, the real issue comes from what others cant see: one’s self-image from deep within.

Poor self-image is the root of all self-doubt, from the physical to the mental to the emotional. And, it’s usually an inaccurate self degradation of who we truly are. In fact, it’s often the polar opposite of how the world sees us. I remember being in graduate school feeling like the least intelligent student on campus, an imposter. I worked hard, knew the material, spoke up in classes, got all A’s, won awards, and coeds flirted with me. Yet, I still felt like everyone was smarter and more talented than me – lord knows better looking than me as one with a disability. My self-image didn’t reflect what the world around me proved: I had every skill and talent to have earned my place at the top of my class, but I wasn’t convinced. My self-image didn’t match reality.

I subsequently spent many following years getting to know myself. I couldn’t change who I was from a physical perspective – there’s no cosmetics, plastic surgery or photo editing for cerebral palsy – so why not accept and ultimately embrace myself? It’s not about ego or narcissism; rather, it’s about realizing that among my flaws and foibles are talents and gifts. I am enough as-is.

And, realizing that I am enough as-is empowered my life and relationships. Confidence can be powerful but short sighted, giving you the courage to present yourself in a certain way to others in a given situation. However, knowing you are enough as-is takes every aspect of your life to a new level because any self-consciousness is removed and you live with ultimate comfort and freedom in simply who you are – from appearance to personality to intellect, you are enough as-is. You don’t need to compete or conform; rather, you can just be you.

What’s more, when you realize that you’re enough as-is, it opens you up to embracing others on the deepest levels because you know they’re enough as-is, too. And, when you realize that reciprocation – we’re all enough as-is – the world becomes an inspired, warm place. If we purely live with authenticity and vulnerability – both the truest of strengths – nothing intimidates or scares us. Life simply inspires us. When you say to the world, Here I am, take me as I am because I’m enough as-is, it frees you of all self-doubt and insecurities. There’s no room for anything but a positive, authentic self-image.

Now, the fact is, there are a lot of self-doubting, insecure people out there, and they’re not going to accept you, me or anyone as enough as-is because they refuse to accept themselves. But, that’s their tragedy, not ours. As I like to say, If you embrace me as-is, we’re going to have a great time. If you don’t embrace me as-is, as I extend equally to you, then get off of the Mark Bus because it goes to some pretty awesome places you’re not healthy enough to handle!

What’s most rewarding is that when living as enough as-is, and you meet people who on the surface seem totally superficial, you’ll be amazed at how quickly some can almost instantly drop the facade and become enough as-is, where you connect on the most genuine level. And, it’s touching to see them take a sigh of relief and let down their guard, realizing that they, too, can be enough as-is.

None of us, however, should use this as an excuse not to consistently pursue personal growth. To the contrary, recognizing ourselves enough as-is fuels personal growth. In a society where most exercise for superficial vanity reasons, I, too, workout. But, I do it to simply be the best I can be, regardless of anyone else’s ideal. Lots of guys are more muscular and stronger than me – and kudos to them. I just work out for my own enjoyment, and my body is what it is, enough as-is.

Most importantly, when you truly recognize yourself as enough as-is, it gets you out of validation mode. Think about all of the terrible situations we get ourselves in by pursuing the validation of others, from teens smoking due to peer pressure to employees compromising integrity to please a boss to those engaging in promiscuity to feel desired, and on and on. The minute that we truly recognize ourselves enough as-is, it removes the need for validation from others, creating much healthier decisions and life paths.

May the mirrors in your life reflect the amazing spirit in you, enough as-is, a person of tremendous contribution to the world around you. …As for the squirrels, you need not worry when looking in the mirror – they’re only out to get me.

Garages

By Mark E. Smith

When I was seven, my mom moved my brother and me into a friend’s garage. It was no mirage. For those few days, I felt homeless and helpless, useless and restless. It’s what happens when the rent’s not paid.

It was scary. Scars that I buried. And, now the chicks wonder why I focus on career and my daughter? Priorities straight, bills never late, and as for a date, they come and go like an occasional snow – storms in the night. It works, but is it right?

In business, I’m bustling. As a writer, I’m hustling. And, as a father I just try to do what’s right. I get done what needs to get done by day, but forever toss and turn at night. See, when we think all heals, again spin the wheels, reminding us of our original plight. Have you known such inner fight?

Work may seem an addiction, but paranoia is the affliction, getting as far from that garage as I can.

But, now I own my own, attached to a house. Dinner on the table, life turned into a fable, and my daughter sleeps soundly at night. I’ve penned books that tell stories, take stages in the glory, and look forward more than back. That’s right.

With a garage as home in your past, it’s always going to linger and always last. But, at some point I realize my past is so far. And, a garage is a garage, just some place for my daughter to park – her car.

Stereotypes – Spoken Word Video

By Mark E. Smith

Unfortunately, we’ve all experienced stereotypes, no matter if they were placed on us, we’ve witnessed them used toward others, or, worst of all, we’ve engaged in them. In this spoken word piece, I explore the true meaning, purpose, impact, and consequence of stereotypes.

Giving Without Having

By Mark E. Smith

I always say that I never meet more content, fulfilled people than those giving to others, albeit a parent nurturing a child or one stranger helping another through acts of kindness and charity. And what’s intriguing is that those giving aren’t typically those who you’d think would be in a position or mindset to give. A friend of mine, for example, volunteers tirelessly with the Muscular Dystrophy Association. Yet, I’ve watched his own progression of muscular dystrophy take him from walking to needing extensive care, using a very high-end power chair, having lost the use of most of his muscles. How is it that someone losing his own health can retain the spirit to support the health of others?

The Bishop, T.D. Jakes, says that if you want to find ultimate healing and fulfillment, “give what you haven’t received.” Think about that. If you want to fill a void in your life, give to others what you haven’t received.

Now, if you’re a literal person, you’re probably thinking, How can I give what I don’t have?

Quite easily and with profound effects, actually. Anyone who knows me knows that my daughter is the center of my life, with fatherhood my single most important role. There’s nothing that I won’t do for my daughter, and literally every morning for the past 16 years, I ask myself, What does my daughter need from me today, and how can I be a better father?

However, here’s the twist: My father wasn’t in my life. Beyond a stepfather, who tried but didn’t have the functional capacities to parent, I grew up not knowing what a father was. And, I remember being in my late teens and early 20s yearning for a father, but not knowing the role of a father.

And, then my daughter was born. With her birth, in an instant, much of the void was healed within me. For the first time, I knew what a father was: me.

Through giving my daughter that which I had not received – a true father – it ended a negative cycle, and the effect was profound. Through being a father, I resolved not having a father, and knowing that I could give my daughter what I didn’t have was the purest form of healing I’ve ever known.

I see the healing power of giving to others what we have not received in so many aspects of life. In disability experience, like my friend with muscular dystrophy, if our condition can’t be controlled, let us serve others in similar situations to better their lives. Maybe you didn’t have a mentor in your career, so mentor someone yourself. Maybe no one pulled you aside when you were struggling in some way in life, so be there now to pull someone aside and help. The list goes on and on, but here’s the point: you don’t need to have in order to give.

Sure, common sense says that in order to give, one must first receive. Yet, in reality, one must not receive in order to give; but, rather, one should give what one hasn’t received. And, by doing so, the circle remarkably completes itself – because we, too, receive in the process.

Why Painters Paint

By Mark E. Smith

At 42, I sit here with my office door shut. I’m staring at a shiny prototype power chair drive wheel that’s balanced upright on my eloquent black desk. The light reflects off of the angles machined into the polished rim like a diamond. No one knows I have it. Sure, eventually I’ll return it to my company’s R&D design group. But, for now, like stealing a great painting from the Musee du Louvre simply to possess greatness, I stare at it, awestruck by its form.

When I was eight, I loved the liberation of my power chair, but hated its wheels. They were hospital-gray mags, the first power chair drive wheel incarnation that wasn’t just a beefed-up spoke wheel. But, they were ugly, bulky, and gray – on a hospital-chrome frame, no less. I lay in bed at night, staring at that power chair, emotionally struggling between loving and loathing it. Yes, it empowered my life, propelling me through public school at a motor-growling three miles per hour. Yet, there was nothing cool about it – not the gray and chrome power chair, not the other kids staring at me as I growled by. It was ugly. All of it was ugly.

So, I scrounged up a few bucks, went and bought two cans of black spray paint, and wasn’t going to live with the ugliness anymore. Sometimes beauty does come from the outside, in.

With no one home, I slid out of my power chair onto the back yard grass – no way of getting back into my chair – and I opened a can of paint the best I could. I shook the can, just wanting to paint the rims, just wanting to get rid of the ugliness, from the outside, in. And, as I tried to spray, paint went every where until, with tenacity and patience, all was black – the wheels, the tires, the frame, my face, the dog – it was an explosion of black. And, it was the coolest thing I’d accomplished to date. The greats weren’t great because they could paint, but because they dared to paint.

My mom came home, finding me sprawled on the grass, surrounded by blackness, and simply said, “You know, you have to live with that chair that way.”

And, I thought, “That’s right. Just the way I want it, beautiful from the outside, in.”

Rings we Wear

By Mark E. Smith

There’s so much to be said for self-acceptance and just presenting ourselves to the world as who we are. No masks. No Facades. Just be thankful for who we are, and whether others accept us as… well …just us, doesn’t really matter. And, in that spirit, here’s my spoken word piece, Rings we Wear.

Something About Mary

By Mark E. Smith

When Mary and I talked in the Biltmore hotel’s bar in Los Angeles three years ago, there was an unusual familiarity. We both have always been around wheelchairs — and the close-knit community that innovated them since the 1970s — but somehow never knew each other, personally. We both knew of each other, and certainly knew everyone else, but oddly just never crossed each other’s path. Yet, both knowing everyone else in the bar, as well as traveling in the same circles for 30-something years, we had an instant known-you-forever connection.

However, as I’ve learned in the subsequent three years, Mary’s graciousness had nothing to do with our common experience and friends. Rather, the instant comfort and connection I found with icon, Mary Wilson Boegel, one of the original Quadra wheelchair crew members, was simply who she is — open, embracing, encouraging, love-filled — regardless of who you are. I’ve since seen her light up every room we’ve entered when we’ve been on the road at various expos and events. And, whenever anyone needs anything, Mary and her husband, Bruce, are always there to help. She even is so gracious toward my daughter, always acknowledging her accomplishments via Facebook. There’s just something about Mary, a true soul mother to many.

And, so it was no surprise to me that on the recent 40th anniversary of the injury that caused her spinal cord injury, she shared with us who know, adore, and love her one of the most amazing pieces of writing I’ve seen on the subject, a piece that doesn’t just address her disability experience, but so beautifully captures many of our experiences who’ve used wheelchairs for decades now. And, the lesson that she ultimately shares is… well… breathtaking.

It’s with great privilege that I share with you this amazing piece of writing by such an amazing woman, where may you be blessed by having a bit of Mary’s spirit in you.

There’s Something About 40
By Mary Wilson Boegel

Today is the 40th anniversary of the day I broke my back and began living with a spinal cord injury. I have certainly acknowledged this day in my heart each year, but there’s something about 40 that steps up one’s self-awareness – reflection, which then turns to gratitude. And, of course, love… the greatest gift of all.

So much has happened in these 40 years. Huge challenges, which continue to help me nurture strength, creativity, perseverance, compassion, vulnerability, humility and, then, solutions wrapped in gratitude. And, all the amazing people I am blessed to know and have in my life… love is the best anyone can hope for… giving and receiving… I am truly blessed.

In the spirit of “you’ve come a long way, baby,” here’re just a few:

The doctors gave me a lifespan of 15 years maximum in 1973. There was no ADA. Nobody wanted to hire me. Nobody wanted to rent me an apartment because they were afraid it would offend the other tenants. Nobody wanted their kids to hang out with me, God forbid, date me. Many would cross the street when they saw me coming, so they wouldn’t get too close to me. Many store clerks would not speak to me, but rather address a companion I was with. No curb cuts, so I pushed in the street or found a driveway if lucky. Limited restaurant and “social activity” access… sat in the slanted aisle of the movie theater if fortunate enough to go (cite the little things we take for granted). No public restroom access or water fountains or payphones (yes, kids, before cell phones!). No ramps, no easy-swing doors, no public access in general. Most private homes had stairs to just get to the front door. And flying… hahaha… Crawling 101 was the rule unless someone was willing to carry you – that is, assuming the airline let you fly to begin with. Discrimination was alive and unwell. Myths and misconceptions running rampant. Cripple was a common reference. And no lightweight – never mind, ultralight – wheelchairs.

But, love made it all ok. Starting with the love of life, waking up each morning and being grateful for that day. Loving (ok, sometimes fueled by anger) the challenge of trying to improve perceptions, access, mobility. Loving the opportunity to try to make a difference. And, by far, most importantly, loving and being loved by the incredible people in my life. Breaking my back was a slap upside the head to be a better, caring, loving person, and apparently its true: when you put something out to the universe, the universe in turn brings it back to you. I am surrounded by so much love… my dear husband, family and friends… your love! So grateful am I for my wonderful life!

Complex Rehab and Punk Rock

To me, punk rock is the freedom to create, freedom to be successful, freedom to not be successful, freedom to be who you are. It’s freedom. -Patti Smith

By Mark E. Smith

In finishing up my book on the evolution of complex rehab technology, I’ve read virtually every book and watched every documentary on the evolution of the music genre, punk rock. Now, if you’re wondering what complex rehab technology and punk rock have in common, the answer is, everything.

During the 1970s and 1980s in the U.S., both complex rehab and punk rock fascinatingly evolved in the same time frame, with the same inspired ideology. Neither was about money or recognition, but about just wanting to make a difference in one’s community. You were in a band because you wanted to express what was around you, and you innovated complex rehab because you wanted to address what was needed around you. It was simply about one’s core values, and living them out through a craft shared with one’s peers.

I mean, take two really obvious examples from the late 1970s, the Ramones and LaBac. The members of the Ramones knew nothing about music except that they wanted to play it, so four guys from Queens, New York, taught themselves how to keep a beat, play just three chords, and sing about stuff they knew, where songs were played at a pulse-pounding pace of under two minutes. When the Ramones made their debut at the now-legendary club, CBGB, a magazine reviewer wrote, “They were all wearing these black leather jackets. And they counted off this song… and it was just this wall of noise….” Others who saw the Ramones in the early days saw them as so musically inept, they were literally offended. Yet, the band members were so true to their vision that they just kept playing, where their authenticity ultimately changed music forever. Sure, there were experimental bands before the Ramones, but none as uniquely passionate about evolving – or, deconstructing – music as them. Interestingly, the Ramones were never a commercial success, but countless bands and the genre of punk, arguably, wouldn’t have evolved as it ultimately did without them.

And, the same goes for LaBac, a true innovator in complex rehab technology. Long story short (and the fascinating full story is in my book), Greg Peek was a race car builder in the 1970s in Colorado, when a local wheelchair dealer asked him if he could fabricate some sort of power seating to help relieve seated pressure points of quadriplegics at Craig Hospital. Peek immediately found a calling and followed it with unyielding intensity, evolving the power positioning industry as, arguably, no other. Again, there were some before Peek, and many after him, but from the day he displayed his seating at an industry trade show, Peek changed everything by sticking with it, successes and failures. “I remember trying to convince the industry to use solid seat pans instead of sling upholstery because they better supported pressure management cushions, and no one wanted to listen,” Peek shared with me. Of course, today, all rehab seating uses a solid seat pan.

And, so, there’s always been a common passion of those in the two crafts, one that those dedicated to it live to no end. Like punk musicians, those who are true complex rehab individuals live it to the extreme. You’re never rich nor poor, employed or unemployed, famous or unknown. You simply do complex rehab because it’s who you are and it’s the passion that you put before everything else – and no one can take that away from you or truly dictate the terms. If things don’t work out with a company, you go somewhere else where they value complex rehab. And, if you have to live in your van during the transition (and I know people who have) you gladly do it. If you’re truly in complex rehab as a life path, nothing stops you from doing it.

The evolutions of complex rehab and punk rock “counter culture” have paralleled each other, as well, where if you’re the real deal you always have a brotherhood to support you. There’s a bond that says once you’re in, you’re in. And, like-minds seek each other out, respect the elders, and support each other. Hymie Pogir is the Iggy Pop (a punk originator still as intense as ever at age 66) of complex rehab, where he reached out to me around 15 years ago, and said, “I’m an older rehab guy, you’re a younger rehab guy – let’s have lunch,” and he flew from Ohio to California to make good on his word. I felt like I was already in the fold, but when Hymie, as among the true elder statesman of complex rehab, pulled me in, I learned really quickly to shut up, listen, and learn. What Hymie and I realized from that first lunch onward is that we both have the core belief that the heart of complex rehab is the removal of any delineation of people. In complex rehab, it doesn’t matter if you have a disability or not, whether you’re a consumer or industry person, rich or poor, black or white, straight or gay. As long as you truly understand the heart of complex rehab – ordinary people doing the extraordinary simply to contribute to our community – you’re among us and we all take care of each other, period.

Of course, like punk rock culture, when you live with such intensity, you will get yourself in trouble from time to time, as guys like Hymie and I have both done. When you live with unwavering dedication to complex rehab, it’s a culture that others aren’t going to always understand – and you don’t have a lot of patience for that. It’s a lot like, OK, I get that you don’t get complex rehab, so how about you go away because you don’t have any influence over my commitment…. Among my best, worst stories was getting called into Human Resources because there was cursing in my office, and co-workers complained. Of course, you and I know that in complex rehab culture, everyone curses because there are constant frustrations, the system just gets worse, and people are rightfully pissed off. Just the other day, complex rehab user and advocate, Paul Parino, called me on my office speaker phone and explained how, in his exact words, “New York State is giving it to us up the ass again by trying to cut attendant care funding. We already have people stuck sleeping in their power chairs because of inadequate attendant care, and now the Governor wants to F’ us some more….” That’s justified language, based on real emotion and circumstances. Complex rehab isn’t the Wonderful World of Walt Disney; rather, it’s the real lives of real people living with dignity in real adversity – and if one can’t appreciate that and the visceral language used, they have no clue what complex rehab is about. I would never dream of censoring a peer like Paul, as he’s on the front lines and deserves utmost respect.

So, I got called into H.R. a while back by a well-meaning young man, doing his job and supporting his family, which I respected tremendously. But, other than my employee file, he had no idea what I did in my role, how I fit in the complex rehab community, or what complex rehab is. So, I answered his questions with brutal honesty: Of course there’s cursing in my office. My community lives in the real world, and it isn’t always pretty. Imagine going from an able-bodied, employed father of three, to being hit by a drunk driver on your way home from work, becoming a quadriplegic. Not only can’t you walk, you can’t dress or bathe yourself. You can’t pick up your two-year-old or reach out to hold your wife’s hand. Your days are spent not just trying to physically survive and emotionally cope, but you’re in dire financial straits, fighting with insurance companies, and struggling to get attendant care. And, then your power chair breaks…. What kind of language are you going to use when you call me? And, do you want me to be a cold, corporate stooge on the other end of the phone, or be who I am, who goes through some of what you go through, where shitty circumstances are rightfully acknowledged as shitty circumstances?

The truly well-meaning H.R. young man looked at me like, Now what do I do? because I’d just given him a soliloquize on complex rehab at its most real, gritty level, the world you and I live in. Fortunately, my big boss is complex rehab at heart, so I didn’t get fired over “inappropriate language.” Instead, they moved me to a nicer office in a different department, and asked me to control the language use.

Alas, if complex rehab is punk rock, Greg Peek is the Ramones, and Hymie Pogir is Iggy Pop, where’s that leave me?

Well, I see a lot of parallels with Henry Rollins, best known as the lead singer of Black Flag, the all-immersed Renaissance man of punk rock. We both come from very little, and entered our cultures mid-stream. Many came before us, and some after – and we respect all. Henry left a job at Haagen-Dazs in D.C. to move to California to pursue punk at all costs, and I left a job at a community college in California to move to Pennsylvania to pursue complex rehab at all costs. Both of us knew that we weren’t going to compromise or fail, as while there are a lot of people smarter and more talented than us, few are as dedicated. As long as no one gets in our way or questions why we do what we do, we work till the flesh falls from our bones, and strive to honor our peers even when it gets us in trouble with those who aren’t part of our cultures. We both work at practicing intensity toward our crafts, where, as Henry puts it, intensity will always pull us through any bouts of exhaustion, poverty, and bad circumstances. Henry’s run 2.13.61 Publishing, just as I’ve run WheelchairJunkie.com, both remaining authentic to our core cultures, where we’re not just about the end product, but the history, people, and future elevations of the crafts we serve, where no one can take that extraordinary independence from us. While Henry has his Black Flag tattoo embodying who he is, I have my wheelchair tattoo embodying who I am. We’ve both built our lives as public but relatively solitary men, where our sole focus is the cultures in which we live, work, and breathe.

And, so, the cultures between complex rehab and punk rock are the same: It’s not about where you work, where you come from, or how society labels you. As long as your heart and soul is in it – where it’s a true life calling that you’ll sacrifice all for – you’re with us. …Now, get on the bus and let’s go – we’ve got work to do.

Fake Empire

By Mark E. Smith

I don’t know, sometimes we must wonder. Were they words from the heart or just an amateur blunder?

See, he’s an occupational therapist by education, who now reps complex rehab power chairs in the Southwest of the nation. And, he was on YouTube talking about his clients, where he views his job as science. And, he was right on site, with the words he spoke, where all of us with severe disabilities have known the liberation of a wheelchair from when we awoke – from an accident or birth, ever since rolling the Earth.

But, then he said something about his clients that hit me at my core, where I immediately cringed, my jaw dropped to the floor: “…I’ve always wanted to fix people,” implying that those he serves are broken …Those were the words he’d spoken.

As ones with disabilities, are we broken? …To me, that wasn’t what he implied, but from his ignorance, it’s truly what he’d spoken.

Man, 2013, and without inhibition, there are still even those in the mobility industry who dismiss us based on condition. How is that acceptable by any standard? Just because we use wheelchairs, our societal value is still being slandered.

Now, I don’t wish to criticize another man or place blame because that’s not who I am. However, I wonder why one supposedly serving those with disabilities labels us with such shame? I mean, where’s he come off making us his professional token? Broken? It strikes my heart to hear such words spoken. Yes, we may have disabilities, but who is he – or anyone – to diminish our dignities? Broken? Token? Don’t use hurtful words to place me, we, us in the back of the bus. You, me, we, and us are perfect as we are, and no one has the right to judge us from the leather driver’s seat of a luxury car.

It’s a sad moment in time when one who professes to care actually hurts those one serves, where one doesn’t extend the respect that everyone deserves. Just because you can walk, that makes you a hero and martyr? How about coming off of your pedestal and see those of us with disabilities as real people – that’s a good starter.

And, could one convince my daughter that her father is broken due to disability? Nah, at 16, she’d see right through such bigoted hypocrisy. And, if a man and his company are bold enough to promote patronization, as one with a disability, I’m not going to tolerate their degradation. Maybe it’s easy for some to look past loaded words – hurtful – and just forget it. But, I can’t, and to him in his heart, soul, and mind, I hope someday he will get it.

But, for now, on the topic, I have just a few more words for those who made his video: learn to respect all of diversity, and most of all, please learn to edit. Learn not to record or broadcast a pitiful lack of simple human etiquette.

Dignity toward all is something we extend, not rob. And, if you’re not doing that toward those who you serve, my advice is to reassess what’s in your head and your heart – then find another job. Until you can respect those of us with disabilities and the equality we deserve and desire, you’re not a specialist of anything, but merely living half awake in a fake empire.