Disability Advocacy – PowerchairDiaries

The Kids Already Have it Right

By Mark E. Smith

I recently presented a disability awareness program in front of 50 or so children. They were young, between the ages of five and 10. It was a Boys and Girls Club summer camp, and in between all of the fun activities that kids typically do at summer camp, the director sought to enlighten them with lessons in diversity. In my case, the diversity that is a disability.

As adults, we can presume the dynamic. Able-bodied children unsure what to make of someone like me: my power wheelchair, muscle spasms, slurred speech, all emblematic of a term they’ve never heard, cerebral palsy. We could also speculate that the children may be initially put off, unsure, maybe even fearful upon meeting me. After all, formal psychology teaches that we naturally fear the unknown, those who are different from us. In fact, I once read a fascinating study that asserted that the reason why strangers may speak to an able-bodied companion instead of directly to one with a disability – a situation my wife and I sometimes experience – is because most gravitate instinctively to the known, avoiding the unknown. So, it would be understandable for the children interacting with me for the first time to have all of these very real emotions.

Yet, this presentation went exactly as the many I’ve given over almost three decades. That is, the children were totally comfortable and accepting of me, of my differences, from the first moment. I mean, surely there must have been a few apprehensive kids, as within any group. However, in whole, I’ve seen children respond to the unknowns of my diversity in a way different from some adults: they immediately embrace it, unencumbered by preconceived notions, seeing people as… well… people.

During my presentations, I give the kids the opportunity to ask me anything. Virtually everyone raises a hand. As I call upon children, one-by-one, the questions are so genuine, it’s a life lesson for all of us. See, while I receive the occasional practical question – how do I sleep or shower? – the majority are ones of commonality seen by the children. What’s my favorite color? What’s my favorite flavor of cupcake? Do I like dinosaurs? They’re not dwelling on differences, but focusing on similarities.

It’s long made me think, where did we, as adults, turn the corner away from such genuine acceptance of others who are seemingly different? When and why did many of us lose such an innate trait as seeing only the commonalities in others, not differences? I’m guilty of it. I, too, note differences when I see them in others, and while I strive to be accepting and open-minded, I can fall into that trap of preconceived notions projected unjustly onto others. Yet, when I think back to my childhood, I didn’t have them then, and I remember being perplexed at times as to why some adults had them toward me as a child with a disability?

According to a Harvard study, while our brain is hardwired to recognize differences, seeing differences in others aren’t heavily engrained in us until around age 10. At that point, we become highly impressionable by societal views and this is how our “prejudices” form. The good news is that we are also capable of receiving positive impressions, as well as unlearn negative ones. It’s ultimately up to us whether we retain the open heart of a child.

For me, I’ve come to understand that my disability awareness talks to children aren’t about them at all – they already see people correctly, where diversity isn’t yet a word that they need to know. Rather, the real lesson is for some of us adults in the room: there’s truly no diversity among us, just our common humanity.

American Airlines Checked My Dignity at the Gate

By Mark E. Smith

As one with cerebral palsy, using a wheelchair, I’ve been blessed. For two decades, I’ve built a career in the corporate business world. That career has allowed me to fly on hundreds of trips, from Hawaii to Spain, to many destinations in-between. I, like most business travelers, crisscross the friendly skies from event to event, working to support my wife and two daughters, pursuing the success most of us wish.

However, on March 27, 2017, on American Airlines, I saw a dramatically different side to the world of air travel that I’ve long known.

See, I’d finished five days working a trade show in Southern California, and as I waited to board American Airlines Flight 121, departing at 11:30 am, from Los Angeles to Philadelphia, all was typical. I had my ticket in hand, my wheelchair was tagged for cargo, and I was looking forward to a smooth flight home. Soon, I boarded, as did all of the other passengers, and as we sat buckled in, the Boeing 737 warmed up for departure.

Seated in row 24, my attention was called away from looking out the window, to a large group of American Airlines’ flight attendants, gate agents and ground crew – a sea of varying uniforms and two-way radio chatter – coming up the aisle. Without speaking to me, they asked the two women sitting next to me to move from their seats, explaining that they were removing me from the plane. I was immediately alarmed, not knowing what was going on, and asked what the issue was? Everyone in the American Airlines group paused and the entire plane was voiceless – just the mechanical hum of the 737.

I looked from one person to the next to the next, and all just stared. Finally, a flight attendant exclaimed, “This plane isn’t leaving without him!” and sat beside me. Her sudden burst of emotion confused me even more. I was then told that communication between the captain and ground crew instructed that he wouldn’t accept me and my wheelchair on the flight.

I was dumbfounded. American Airlines personnel were refusing to transport me because I am a person with a disability who uses a wheelchair. This scene was unquestionably a violation of a number of federal laws, and I was stunned that it was happening to me. However, in that moment, I kept all emotions in check, explaining that my wheelchair was, in fact, airline compliant, easily transported with a compacted size of merely 24” wide by 32” high, that it’s always easily loaded, that I often fly for business. The American Airlines group’s response was simply to continue removing me from the plane in a hurried fashion – Captain’s orders. I knew then that there was no reasoning with this dehumanizing situation. Compliance was clearly my only option, as is often the insidious nature of blatant discrimination.

As I scooted across the seats toward the crowd, having to transfer into a dolly-like chair so that they could roll me off of the plane, all of the other passengers watched, silent. Although many clearly heard that I was being removed because American Airlines didn’t want me and my wheelchair on the flight’s manifest, no one questioned why, in 2017, a businessman with a disability was being ejected from a plane? In that moment, I realized the gravity of it all: I was being stripped not just of my civil rights, but of my humanity. For the first time in my life, in the microcosm of that American Airlines Boeing 737, I was discarded as a human being – literally.

Think for a moment how surreal and painful it was for me in that cabin, where one minute I was a businessman traveling home to his wife and children, to the next moment of being displayed to rows of countless passengers as less of a human due to using a wheelchair. Imagine how emotionally breaking that is.

They rolled me down the aisle, off of the plane, and parked me on the gangway, totally immobile, strapped to a dolly chair, as the plane pulled away. I was discarded cargo.

As I sat there truly helpless, unable to move, not knowing how or when I’d get home – or even where my wheelchair was – I realized that I had to make an emotionally life-saving choice. I could allow American Airlines and its personnel to strip me of my dignity and degrade my humanity. Or, I could take control of my true being. Instead of expressing anger, I could maintain grace. Instead of experiencing anxiety, I could evoke strength. And, instead of external tears, I could hint an internal smile. And, with that, there I sat, deep in introspection, hearing the plane fly away, absorbing the fact that I, based on disability, was deemed less than human by American Airlines and its personnel.

As I waited in the unknown, I was comforted by words I heard long ago by Dr. Martin Luther King, Jr.: We must accept finite disappointment, but never lose infinite hope.

An Unlikely Pair

By Mark E. Smith

At a recent dinner celebrating this year’s anniversary of the Americans with Disabilities Act at the DuPont Circle Hotel in Washington D.C., I sat next to an 18-year-old intern for the National Disability Institute. She was amazingly well versed on the issues currently facing our community, not to mention refreshingly mature for her age. She’s what both the disability community and world need from her generation.

However, as we spoke throughout the eve, an aspect intrigued me: not only didn’t she have a disability, but she had no connection to disability. As a freshman political science major from New Hampshire, this internship popped up, she applied, and got the two-month summer gig in D.C. Yet, how does such a happenstance situation as her internship lead to such understanding and passion toward the issues facing those of us with disabilities. I suspected there was more to her story.

As I asked about her family, it all began adding up. Her mother, a successful C.O.O. for a company you’d recognize, died of cancer three years ago. Imagine the adversity of losing your mother to cancer as you’re in high school. It’s well… unimaginable.

And, there within resided the young lady’s understanding of disability experience. No, not literally – we can’t compare dismal employment rates of those with disabilities to dying of cancer. However, what connected her to us, and me to her, was an understanding of what it’s like to live through adversity.

See, there’s a universality to adversity. It’s not person- or situation-specific. No matter the origin or circumstance, when we’ve known adversity, we innately share that empathy with all who’ve experienced it. If we recognize that there’s no form of adversity any more or less significant than another, then we relate with all of adversity. Adversity becomes part of our shared humanity.

And, so as we sat at the event that eve – she an 18-year-old college student, I a 45-year-old with cerebral palsy – of course we clicked: we’ve both been shaped by the universal nature of adversity.

The True Origin of Civil Rights

By Mark E. Smith

At this writing, it’s the 25th anniversary of the Americans with Disabilities Act (ADA) – and if you’re among my readers who thinks it doesn’t pertain to you because you don’t have a disability, then you should especially keep reading.

See, the ADA isn’t merely about ramps and access to public transportation, but it’s literally civil right legislation. Its intent is to protect those with disabilities from all forms of discrimination. In so many ways, it’s an add-on to the Civil Rights Act of 1964.

The most sweeping civil rights legislation since Reconstruction, the Civil Rights Act prohibits discrimination of all kinds based on race, color, religion, or national origin – but it doesn’t include disability. Hence, in part, the ADA.

In this spirit, on the 25th anniversary of the ADA, I don’t see it merely as a milestone toward social inclusion of those with disabilities, but an opportunity for larger questions: Can we legislate acceptance, and what’s the ultimate solution to civil rights for all?

I’ve spent about half of my life both pre- and post ADA. Yes, I’ve seen vast societal shifts in inclusion and infrastructure toward the positive over the past quarter century via the ADA, just as I’ve seen greater acceptance of all so-called minority classes. The United States is a far better place post the Civil Rights Act and ADA.

However, I personally still encounter those who stereotype me and, yes, the occasional instances of discrimination based on my disability. And, I’m not alone. From in our personal lives to watching the nightly news, who among us doesn’t still witness racism, sexism, antisemitism and every other labeled form of discrimination we’ve ever had?

What I’ve learned in the second half of my life, as a member of a “protected class,” is that while you can legislate socially-inclusive processes and infrastructure, you can’t legislate tolerance or acceptance, you can’t legislate what’s in someone’s mind and heart. Prejudice can’t be legislated out of someone.

I hear rumblings from the local diner to Capitol Hill that the remaining solution to prejudice and discrimination is additional legislation. However, there’s really only one ultimate solution.

As much as we see civil rights as a societal issue, it’s not. Rather, civil rights is a personal issue, and it’s ultimate solution is found within each and every one of us. Yes, we can legislate public policy, and rightfully so. However, we, more importantly, must engage our minds and open our hearts, to where civil rights isn’t just an ethical societal concern, but more so a personal moral standing, where we simply see all others as equal as ourselves.

Barbershop

By Mark E. Smith

No, I wasn’t surprised, but it hasn’t happened to me in so long. Over my 44 years, I’ve seen so much progress toward social acceptance of all, that I simply don’t encounter such situations often anymore.

However, while society at large has changed – where diversity on all levels continues becoming the norm to the point that even using the word is becoming less relevant – some individuals don’t change. And, where I see this lack of change the most is as a generation gap.

So, when the 70-ish woman at the salon refused to cut my hair this past week due to my wheelchair and cerebral palsy, I wasn’t surprised. After all, she was raised in a time when those with disabilities were “cripples,” African-Americans were “negros,” and being openly gay didn’t exist. Yes, we hope that most evolve with the times, but we also know that limited life experiences can keep us from growing, it can keep prejudices ingrained in us. And, for this woman, I understood that disability – not me as an individual – was too much for her to process. In fact, I felt for her because she was beyond flustered while I was fine with the situation. I just wanted a haircut, not to judge her beliefs.

Of course, the salon manager, Andy, jumped in, cutting my hair – because that’s how we accept each other in society today, open, embracing, with grace and dignity, no matter who you are.

I left the salon with a haircut and a reminder that the beauty of practicing acceptance sometimes means likewise embracing those who don’t accept us at all.

Prize Fighting

Mark E. Smith

As I lie on my bed in the surrounding silence, I should be angry, frustrated, maybe even panicked. I just literally beat the hell out of myself – scraped, bruised, exhausted – in three failed attempts to simply use the commode.

See, as one with cerebral palsy, in order to use the commode, I have to go from my power chair to my bed to my manual chair to the bathroom to the commode, keeping my balance on the commode, then back to my manual chair to my bed to my power chair. On my best days, it takes 20 minutes; on an average day, 40 minutes; and, on this day, after one and a half hours, I’ve not accomplished getting on the commode. I’ve tried three times, my uncooperative body struggling with every transfer, slamming me off of the commode, against walls, on the floor over and over.

Yet, as I lie here on my bed, I’m not angry, frustrated or panicked. While physically I’m uncomfortable, to say the least, I’m genuinely happy, full of gratitude. As poorly-functioning as this body is, it always gets me through. It’s the body of a prize fighter. It can get knocked down, bloodied, counted out by others, but it never quits and always gets back up.

For the moment, like a jaw-stung boxer dizzied on the canvas, I lie here with all things good streaming across my closed eyes. I think about the upcoming Christmas holiday – I’ve done no shopping yet, but I’m excited to give very meaningful gifts from a list I’ve been covertly gathering from those I love. I think about my daughter’s pending college applications to NYU and Cornell and the University of Pittsburgh, pondering if any of those are better choices than her seeded spot at George Mason University in the Washington D.C. area? I think about having my fiancee and soon-to-be step daughter back from their native west coast in about a week, joyed to be spending another holiday season together as a family on the appropriately wintry east coast. And, I think of the myriad of exciting aspects going on with my career. There’s so much gratitude in my life that I’m even thankful for the predicament I’m in – that is, having to simply use the bathroom, but knocking the hell out of myself in the process, seemingly unable to accomplish such an everyday task.

But, prize fighters never stay down long, and I’m about to sit up, struggle to transfer back into my manual chair, make my way to the bathroom and try to make the small but courageous leap from my manual chair to the commode once again. If I make it this time, fantastic. If my body fails to cooperate further, and I crash from wall to wall to the floor, having to start all over again, that’s great, too.

See, here’s the beauty of adversity: it’s not an easy route to success, but it is a proven route to success. Adversity makes us that promise – that is, as long as we’re willing to embrace it and address with gratitude and perseverance toward whatever it throws our way, we will ultimately achieve victory.

In this way, I’ve only gone three rounds – and I’ve got a lot more in me. Ring the bell. I’m ready.

Kids Be Kids

By Mark E. Smith

As a classically-trained writer, I understand words – their efficacy or impotence, the way they twirl off of the tongue and echo in the ear. Words are powerful, captivating, emotive. And, sometimes, words are defining, both in the positive and negative.

For some time, as a writer, as a parent and as one with a disability – but, really, just as a person – I’ve been struggling with three words that we use to define what I’ve come to know as an ambiguous, possibly specious term: special needs child.

I, of course, understand our social definition of a special needs child, that of a child with a physical, emotional or intellectual disability. But, is it – special needs child – a logical term to use? I mean, I’m not questioning it from a political-correctness or ethical perspective. I simply question if the label is logical?

And, I don’t think it is. After all, have you ever met a child who didn’t have special needs? Of course not. If we truly acknowledge what each child in our life needs, every child is a special needs child. There are eight children in my close family, and they’re all so unique in character and at different stages from one another that each one has special needs. Why only project “special needs” onto children who have disabilities when every child clearly has special needs?

The label also represents a type of reverse discrimination that’s unfair to all children. If you’re with several children in public, and one has a disability, adults often fawn over the child who has a disability and ignore the other children. Yes, such adults mean well, but they’re doing more harm than good. Such situations inadvertently patronize disability and ignore others – everyone loses.

Instead, let’s see kids as kids. Each is special and unique and has needs, and should be recognized as such. Most importantly, let’s drop the labels altogether, and just let all kids be kids.

The Real Investment of Complex Rehab Technology

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

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

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!