Disability Advocacy – Page 2 – PowerchairDiaries

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.

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

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.

The $29 Advocate

By Mark E. Smith

In my recent HME News column, I talked about how, unlike in the classic 1975 School House Rock song, a bill isn’t just a bill, rather, it’s about people, not paper, where getting legislation passed is about Capitol Hill face time, convincing our elected officials and their staffs to sign-on and support disability-related legislation is vital.

Indeed, I was privileged again this spring to be on Capitol Hill – as an advocate, not just a bill – summoning support for H.R. 942, the 2013 version of the Ensuring Access to Quality Complex Rehabilitation Act. We’ve introduced similar versions for several years now (much like in School House Rock, bills low on the priority get stuck on the steps of Capitol Hill, and fall off of the calendar, needing reintroduction). However, this year’s version, we believe, has a real chance, as face time and the quality of the proposed bill seem to have converged, where our elected officials have off-the-record at least noted it as a no-brainer, namely because it serves those with severe disabilities so well. See, H.R. 942 doesn’t just help protect complex rehab technology funding, but it eliminates the “in-home-use-only” rule; it allows those in long-term care facilities to qualify for vital technology like power wheelchairs; it sets standards so that technology is only prescribed to those with appropriate conditions; and, it further elevates the education and licensing of providers. Therefore, H.R.942 isn’t just about protecting funding, but also it’s about safeguarding consumers. And, it’s a cost-saver. For example, Medicare currently spends $1.6 billion annually on pressure sore treatments. H.R. 942 ensures access to both the right seating and clinical services to help prevent pressure sores. In this one area alone, a staggering amount of long-term healthcare costs could be saved, arguably hundreds of millions of dollars in the least.

But, again, H.R. 942 isn’t about paper, it’s about people. And, on the Hill with me, lobbying, were among the most amazing advocates, from a dozen or so of us who use complex rehabilitation technology, to clinicians like Gerry Dickerson, who have dedicated their lives to elevating – and, truly, creating – the field of applying complex rehabilitation technology to increase the quality of life for those of us with severe disabilities.

However, what struck me most about this spring’s lobbying effort, coordinated by NCART, was that we all are ordinary people doing the extraordinary – there’s no magic to making a difference, just dedication and tenacity. I mean, Mickae Lee and Jen Westerdahl are both single moms (and Mickae works two jobs!), yet they scheduled and coordinated hundreds of meetings for our lobbying day, literally staying up till all hours for weeks before the conference to make sure the schedule was complete. That’s the beauty of a democracy – anyone can help foster change with good ol’ effort.

I’ve been on the Hill quite a bit, more than maybe even I presumed, as in a few of my meetings, I was greeted with, “Mark, back for your semi-annual visit, are you?” See, the way it works is that anyone can make an appointment to meet with an elected official or staff (more commonly staff), and in our case with a proposed bill like H.R. 942, we have 15 minutes or so to make our pitch – and a lasting impression.

As a Pennsylvanian, that’s usually my lobbying territory, where I met with my two senators and four congressional staffs. Sometimes I’ll sneak in my old state of California, if needed. Nevertheless, six meetings in one day is a pretty intense schedule, where the size of Capitol Hill and its buildings makes it a race from one meeting to the next. I mean, when you have 15 minutes to get from the Rayburn building on one side, to the Dirksen building across the Hill, you put your power wheelchair in high gear!

I had the pleasure of tag-teaming with Matthew Clark, a wheelchair user from Philadelphia, and he’s emblematic of what I’d describe as the truest advocate – it all comes from the heart, just a guy making a difference. You’ve likely never heard of Matthew, as he’s not in the pages of New Mobility magazine, nor does he work in the mobility industry. He’s a photographer and filmmaker who told me, ”I do this [advocacy] because it’s the right thing to do.”

And, Matthew is astoundingly good at lobbying. Going into a congressional office with him was like walking onto a basketball court with Michael Jordan back in the day – you know you’re in the trenches with the best of the best. For starters, he has an I.Q. that has to be 140 or more, able to recite complex facts and figures by the dozens, making the H.R. 942 fact sheet obsolete. And, then, add to that his wit and charm, and he’s untouchable in meetings, winning everyone over with his eloquence and sincerity.

So, as lucky as I was to end up partnered with the best consumer advocate I’ve ever worked with, I wondered how he ended up on the Hill that day? The answer, $10. As he shared with me, long-haul buses travel between Philadelphia and Washington DC, and much like with airlines, the fares fluctuate, where he scored a $10 bus ticket down, but was admittedly disappointed that it was $19 to return home. Literally, Matthew was taking Capitol Hill by storm, advocating for millions of Americans with disabilities, on his own time and effort – all for $29.

Again, everyone lobbying on the Hill that day had his or her own remarkable story. Yet, when I think about Matthew Clark, he embodies advocacy at its best: One person, one voice serving the interests of millions. And, it proves such a valuable lesson to all of us. You don’t need fame, fortune, or formal training to help create legislative change – just the self-initiative to get involved.

Empty Words

By Mark E. Smith

The two symbolic, ground-breaking shovels that sit in the corner of his office catch my eye. One is gold-plated and the other, chrome. They’re the type of shovels that dignitaries and politicization use to pose with in a dirt patch when kicking-off a new development project. And, they’re leaning in the corner of his stately office, which clearly has not been remodeled since the 1980s, right down to worn leather chairs. But, all is spotless clean – even the shiny shovels.

I could picture him back in the day, likely slamming one of those shovels onto a board room table, and saying in a larger-than-life voice to his executive team, “Are we going to dig our own grave, or dig our way to the top?”

Yet, now he’s a kind, calm, soft-spoken older man, a proud grandfather. And, as he talks I feel a bit writer and a bit grandson. “Never trust words,” he says. “Flow charts, a good dresser, a great speaker – never trust any of it. Only trust results. When someone delivers, trust that. Trust whomever backs you in the trenches.”

And, for a moment, my eyes drift back to the shovels leaning in the corner, and I think about how true his words are, not just in business, but in life. As a writer and speaker, I’m a contradiction in that I’ve always distrusted words. It goes back to my mom and her always lying about not being drunk, my therapist would say. And, while maybe that’s where my distrust of words likely began, it runs more universally than that. I’ve learned that when we truly care about others, we don’t just say it, we show it. Show me you care about me, show me you love me – don’t just tell me. I’ve fallen for words too many times, only to be hurt by them – empty, hollow in the end, the words, me, all of it. You have, I have, we all have. And, what’s insane is that we continue wanting to hear them, the words, and believe in them – I’ll pick up the pace, I’ll make things right, I’ll quit doing it, I’ll change…. But, what’s any of it mean if there’s no action or effort behind the words?

The answer is, nothing. Here’s the fact: when we look and don’t listen – that is, when we gauge a person on what they do, not what he or she says – it’s the ultimate truth of what we mean to that person. No matter if it’s an employee, friend, or love interest, follow what one does, not what one says. Lots of people will say they’re there for you; but, who’s truly there in the sincerest ways? It quickly becomes a short list, doesn’t it?

And, yes, it’s a painful realization, but also a poignant one. See, in the process of realizing how adrift we are, alone at sea, we likewise realize who’s truly there for us, not in words, but in heart, soul, good times and bad. Words are so often an empty gesture; but, actions of the heart always prove true intent. Grab those who put their hearts and souls out there for you – hold on to them, truly trust in them, no longer adrift but anchored by them.

And, as he continues speaking, I stare at the shiny shovels, and again wonder why any of us still trust in words at all?

When a Smell Isn’t a Smelll

By Mark E. Smith

My daughter and I were talking about the horrors of care facilities, and one in particular came up that I’ve visited, where the odor was overwhelming.

“They should hire you to fix that kind of place,” she said, with a belief in me that only an adoring daughter can have in her father.

“It’s not that easy,” I said. “See, in order to make it a better place, I’d have to get rid of the bad smell, and that’s a huge task.”

“How hard could that be?” she asked. “It’s just a smell.”

“Really hard,” I said. “The smell isn’t just a smell. It represents what’s called systemic issues. The smell is caused by much larger issues.”

“Like what?” my daughter asked. “Can’t you just get rid of a smell?”

“Not in this case,” I replied. “See, the smell is caused by overall improper care, from soiled bedding to poor hygiene care of clients. In order to get rid of the smell, you’d have to change the entire infrastructure of care.”

“How would you do that?” she asked.

“Well, you’d start with the management and work your way down – leadership is where accountability for the smell starts, but not where it ends. Every employee there is ultimately accountable.” I explained. “You’d have to change the way everything is done, retrain staff, probably fire some and hire some. But, once the smell was gone by dramatically changing the way everything is done, you’d have among the best run facilities in the country.”

“So, to get rid of the smell, you have to get rid of the real problems, and that starts with the people who run the place because they’re allowing all of the problems to happen, right?” she asked.

“Exactly,” I said. “You have to find the root causes and fix them. Someday you’ll learn in life that most often a seemingly small symptom is the result of a very complex cause – from relationships to business. … A smell is never just a smell in these cases. Always look deeper.”

The Disability-Technology Continuum

By Mark E. Smith

From my CEO to my life-long best friend, a conversation keeps popping up that’s quite fascinating. It’s what I’ve coined “The Disability-Technology Continuum.”

The disability-technology continuum, as I’ve defined it, is an extremely simple yet profound concept. It’s the fact that technology literally makes us less disabled – that is, it improves upon virtually every aspect of our lives, that when we have appropriate technology, our abilities and quality of life expand.

I can use the disability-technology continuum as a prime example in my own life toward how it works and its ultimate results. Imagine there’s a scale from 0 to 100. Zero is totally disabled, as in bed-ridden, and 100 is totally independent. Without a mobility device, I’m at 0 because, based on my disability, I’d be bed-ridden. However, if I have a manual wheelchair, my functionality increases to, say, 30 on the continuum. Yet, with a power chair, now I may be at, say, 60, and with an elevating seat added, I’m bumped up to 65. You get the idea: appropriate technology increases independence, lessening the impact of disability.

Of course, many aspects move one along the disability-technology continuum. Mobility equipment, computer technology, adaptive transportation, and accessible housing, to name a few, all play key roles in moving us from the bottom end of the continuum toward the upper end – and it’s near the upper end where aspects like education, employment, and community involvement skyrocket. And, as we move up the continuum, we don’t just win, everyone wins, as our independence benefits many, where we simply can contribute more toward society.

All of this, however, requires exactly that – societal support, where, culturally all understand the importance of supporting moving others up the disability-technology continuum. See, technology can only get those with disabilities so far. It’s societal support and acceptance that both allow and complete the disability-technology continuum. Technology can physically liberate those of us with severe disabilities, but, make no mistake, we need a society that fosters that process.

Five-by-Seven

The smell doesn’t change – it hasn’t for over 100 years. It’s the smell of urine, feces, body odor, musty hair. And it fills the halls, where it permeates everything within its path – it’s the smell of despair, stripped humanity, the ever-slowly-wasting-away of souls. It’s where some of us visit, some of us live, and too many of us die.

I am, of course, describing residential care facilities for those with physical disabilities – or, more aptly, institutions. Over the 100 years, the common verbiage has changed from asylum, to home for incurables, to institution, to residential care facility. Yet, beyond a name, fundamentally, nothing has changed – not the facilities, not our cultural practices, not even the smells. Those with disabilities still line the halls, locked away from society in literal five-by-seven-foot rooms that have fewer amenities than a prison cell – not even a commode of their own. What you’ll see is a twin bed pressed against the wall, a dresser, a TV, and a common cardboard box with one’s worldly possessions. Nine years, a woman with multiple sclerosis told me she’d been in her room – and I looked at the windowless walls of degraded paint, and thought to myself, Nine years of starring at blank walls absorbing her dignity, humanity, sanity. Nine years dying an emotional death, where she’s treated with less dignity than a convicted murderer on death row.

Now, it’s easy to point fingers and blame the mainstream for still accepting institutionalized care, still locking those with physical disabilities behind stone facades while the rest of the community drives by in luxury cars, never giving a thought to who’s hidden away in that “historic” building. And, it’s easy for families to convince themselves that it’s what’s best for their Billy or Diane, those who have severe physical disabilities, whose families know not else what to do.

However, I hold myself to a much tougher standard, knowing that I, too, am to blame. See, with a flip of a coin, I could have spent my life in a five-by-seven-foot room, where my humanity was stripped, and I wasted away, never to be known. As I tour institutions today, I see not those who should be there, but those just like me if a simple call had been made or the right question asked, where my severe disability and ultimately neglectful parents should have landed me in an institution. But, like missing a flight by moments, later to learn that it crashed, I didn’t end up in an institution. Instead, I went on to college, career, and family – a normality I could have easily never known. And, for those of us with disabilities living independent, upper-middle-class lives, we’d like to think that it’s due to our hard work or perseverance. But, it’s not. It’s just happenstance and luck, where the only difference between us and them was a cosmic coin toss, a stroke of luck that flung us down one path instead of the other, saving our lives while those just as worthy as us – our exact image – weren’t so fortunate.

And, with that reality – that the only factor that prevented me from being institutionalized due to disability was a random, cosmic coin toss – I struggle to live with the guilt and shame that consumes me: What have I done to help any of my peers who remain locked away? Who am I to sleep soundly at night in my custom home, on Egyptian cotton sheets, while my peers lay in a degraded five-by-seven-foot room, on soiled bedding, starring at windowless walls, their lives absorbed by the stench of it all? Who the hell am I to have escaped the death sentence of an institution, and not have had the presence of mind to go back and carry even one of my peers out on my shoulders?

Smashed-Up

By Mark E. Smith

For the third time, U.S. Airways luggage handlers have dropped my power chair from around eight feet in the air (off of the top of the conveyor belt near the cargo door). Fortunately, that particular power chair is like a Timex watch: After two years of use, travel, and being dropped from the conveyor belt three times, it takes a lickin’ and keeps on tickin’!

But, not without battle scars, of course. I mean, when a 300-something-pound power chair falls from eight feet onto the pavement, bad things happen. This time, the power chair landed with such a blow that it actually twisted – not bent, but twisted – some seriously-stout metal structures, destroying an armrest and back cane. Still, the power seating system and power base are fine, ready for more flights (and drops). And, because I’m part of my own power chair company, yes, I am a bit more fortunate than others because I can piece it back together, cover up the gashed areas with black paint, and be off to the next event in real time. Still, in the moment, I’m as stuck as anyone would be at the airport with a smashed-up power chair – not a good feeling or scene.

However, here’s what I really don’t understand: A bunch of people saw my power chair fall off of the conveyor belt – clearly smashed-up – and no one acknowledged it, pretending that it never happened. This time, someone parked it, tweaked as heck, at the gate counter (rather than bringing it to the plane door like they should), and the gate agent came down to the plane door, simply telling me that they couldn’t bring my chair down because it wasn’t working. Duh – it took an 8-foot tumble to the tarmac!

I really appreciate the hard work that the luggage handlers perform – it’s back-breaking, in weather extremes, for not a lot of pay. I also understand that they’re not trained to handle mobility devices, nor is the equipment that they use designed for loading and transporting a big, heavy object like a power chair. However, on a deeper level, how have the airlines created a culture of no responsibility? Call me naïve, but where are accident reports and such? How can a company’s employees and procedures damage customer property without any sort of personnel accountability? Sure, a damage claim can be filled, but that doesn’t resolve the systemic issue of zero accountability among employees – they literally can destroy your property, and no one cares. And, the slight cynic in me wonders if the airlines have determined that it’s more cost effective to just pay an occasional claim than to train personnel and create procedures?

A portion of my career involves flying, and the highlights of my life have been traveling with my teenage daughter the past few years. So, despite a bad track record, and undoubtedly more challenges to come, the rewards of air travel far outweigh the risks and consequences.

Yet, I’d still feel better if I could just fly somewhere without worrying if I’ll be mobile when I land?