The Real Investment of Complex Rehab Technology

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By Mark E. Smith

I strive not to overlap my print writing with my online writing because, really, there’s too much of my work floating around the literary world as it is. How much of me can any one reader take? However, I’m crossing my own boundaries and linking you to a very poignant piece in this month’s print edition of Mobility Management Magazine. You’ll learn a bit more about my life journey — and hopefully a bit more about others’ and your own. http://mobilitymgmt.com/Articles/2014/06/01/Complex-Rehab-Technology-Investment.aspx

What Nancy Didn’t Know

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By Mark E. Smith

My daughter, almost 17, ran into Nancy at the grocery store. Nancy is head of my daughter’s performing arts program each summer, a calm, cultured, collected woman in her 50s. However, as my daughter told me, Nancy was a bit odd that day at the grocery store, a bit disoriented, my daughter feeling as though Nancy didn’t recognize her, although they knew each other very well.

It was the day before Thanksgiving, so my daughter – although disconcerted by Nancy’s sudden distance – chalked it up as Nancy distracted by the holidays and outside of the usual setting where they knew each other, outside of auditions and auditoriums, the music of both their lives. And, I agreed.

Yet, Nancy knew something my daughter and I did not. Or, maybe, my daughter and I knew something Nancy did not. See, later that night, Nancy emailed my daughter, both apologizing and explaining. Nancy saw my daughter pushing a 5-year-old little girl who uses a wheelchair. She was singing and dangling a ribbon as my daughter pushed her down the aisles. But, in the email, Nancy went on, saying that she didn’t know my daughter’s connection to the little girl, but she knew what type of life the little girl must live in a wheelchair, and how difficult life will be when she grows up. Nancy had preconceived notions of what disability meant, ignorance and stereotypes locked into her mind somewhere astray from her wisdom and education, an out-of-place note in an otherwise harmonious symphonic composition.

However, my daughter and I knew something Nancy did not. What Nancy didn’t know was that there are no distinctions among children. Every child is perfect and beautiful and unique in his or her own way. As with no fall leaf being any less awe-inspiring than the next – regardless of its color, shape, or size – every child in a grocery store should bring a warm smile to your face as you pass by him or her in the aisle. Children are simply children, after all – perfect and beautiful and unique just like the leaves of fall.

Something About Mary

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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

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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

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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.

The “Heart” of Complex Rehab Technology – Video

By Mark E. Smith

When most consumers think of complex rehab technology, they think of… well… technology. However, some today don’t realize that the true nature of complex rehab technology – stemming from the original and current innovators – isn’t just about mobility products, but it’s about the heart, ordinary individuals performing the extraordinary simply to better the lives of others. It’s with great privilege that I share one story from my lifetime journey and passion in complex rehab, where heroes in my life taught me so much about the “heart” in complex rehab. Enjoy the video.

Brawling with Books

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Mark E. Smith

The prevalence of alcoholism and drug abuse of many great writers, both past and present, is unmistakable, as is their urge to travel, expatriation in some cases. From Hemingway to Boroughs to Bourdain, our best writers have all sought escape in their lives. Why is that?

As a writer, I can tell you that the answer is, fear – and escapism from it. Spaulding Gray’s monologue – turned into a 1992 film – Monster in a Box, chronicled his emotional struggles to finish his first novel. In fact, on March 7, 2004, Gray committed suicide, a bout of depression that those close to him say was triggered by his struggles in writing his latest book.

See, many don’t realize the fear that most true writers have toward writing. If you’ve been in a bad relationship, knowing that leaving would lead to success, but you couldn’t find the courage to do it, that’s what sitting down to write is like. If you’ve been dissatisfied with your job, knowing that you could do better elsewhere, but were scared to make that leap, that’s what sitting down to write is like. Or, if you’ve ever wanted to diet and exercise, but were intimidated to start because of the commitment required, that’s what sitting down to write is like. It’s simply the fear of failure that stops many in their tracks, causing them to seek diversions or escapes instead of assuming accountability and just accomplishing the task at hand.

But, not me. At the age of 23, I met with a book publisher, and he verbally tore my manuscript to shreds, calling it “amateurish,” and I thought, I’ve spent two years writing this with nothing more than a belief that I could do it, so call me what you will – but, in my mind, I’ve had the courage to do it, and that’s all the validation I need….

“But, there’s more to this story,” he continued. “You might just be among the most fearless writers I’ve ever met, so let’s see if you’ve got the balls to take this manuscript from good to great – and, if you do, I’ll publish it.”

From that day forward, fearless was my only way of writing. I may fail miserably in the attempt – and I have at times – but fear will never stop me ultimately succeeding.

And, so this past spring, when I embarked on my most ambitious book project to date, a part of me thought, How am I going to pull this off? Yet, a bigger part of me was like, Man, I’ve published over 1,000 formal pieces, with five books under my belt – I can do this….

The concept was to capture the birth, evolution, current state, and future of complex rehab – and, most importantly, tell the stories behind the story in an astoundingly compelling way. In my mind, it was like setting out writing The Social Network (the story behind Facebook) – that is, could I make what would seem a pretty mundane subject, and find the extraordinary in it? I remember one of my colleagues saying, “You’re the only one who can take this subject and make it fascinating.” Easier said than done, I thought. But, I was up to it.

With a dose of fearlessness, I went to work, tracing the roots, interviewing the individuals, and capturing the iconic moment of complex rehab, and it’s taken me on both an extraordinary professional and personal journey. At first it was intimidating and laborious, just a push to get through the first chapter. I remember saying to the woman working as my editor, I’m nine pages into this, and it isn’t getting easier. However, then I remembered that the best writing comes from fearlessness, and so I did what many in the complex rehab industry would view as a pretty bold move: I went to Ohio, rolled through the doors of Invacare, and sat one-on-one with Mal Mixon, in his office, for three hours, interviewing him about the evolution of complex rehab technology, Invacare having innovated several key technologies in the early 1980s. And, from there (with his sharing some pretty astounding never-told-before stories), I was like, Wow, these are the types of awe-inspiring first-person stories I need to write the book that I know that I can write – and, more importantly, the type of book that people won’t be able to stop reading.

From there, the writing and interviews snowballed, where I wasn’t writing from fear or pressure, but inspiration and passion. In no time this past spring, I had a book coming together that captivated me – one heck of a story unfolding. No, the manuscript won’t be done for about six more weeks at this writing, but I wake up seven days per week itching to squeeze in that day’s writing where I can.

In so many areas of life, fear dictates what we accomplish – or, don’t accomplish, as it is. However, when we put fear aside, and say, Yeah, I can do this regardless of the challenge, we will ultimately accomplish it. Replace fear and escapism with inspiration and passion, and you’ll be amazed where your goals will lead.