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.


By Mark E. Smith

Kevin Jorgeson and Tommy Caldwell recently became the first rock climbers to “free climb” Yosemite’s mammoth 3,000-foot granite face, El Capitan. For the climbing community and public, what made the climb a record was the fact that the duo didn’t use any climbing aids – just bare hands griping crevices and climbing shoes pressed on the rock face.

However, the free climb wasn’t what impressed me. Rather, it was a story within the successful climb.

See, on day 8, on Pitch 15, one of the toughest stages, Caldwell zipped right up it. But, Jorgeson failed. In fact, he failed over a dozen more times, adding 7 days to the climb. Imagine the scene. Caldwell perched slightly above the pitch, watching his partner fail over and over, day after day. And, Jorgeson consistently failing to the point where he should have thrown in the towel. It looked to both men and the world watching that it was an impossible feat for Jorgeson.

Yet, despite exhaustion and escalating self doubt, Jorgeson finally conquered Pitch 15 after 7 days of trying. When asked what pulled him through, he replied, “Resolve. I didn’t see any other outcome but to make it….”

We all encounter Pitch 15s in our own lives, those times when we don’t think we can go on, those times where success seems impossible, adversity too looming. I’ve been there regarding living with disability many times. And, what I’ve learned, much like Jorgeson, is this: we can either concede and quit, or we can muster resolve and determination, where ultimate failure isn’t an option. We know the outcome of conceding and quitting – dreams dashed, an important part of our potential never realized. Yet, when we persevere through the seeming impossible, the results are astounding – we succeed.

Jorgeson’s dilemma on Pitch 15 was a unique one in physicality. After all, he’s among the first to free climb El Capitan. However, emotionally and mentally, his plight was universal – keep trying, against all odds, until you make it. Maybe you’re currently struggling in a college class or with sobriety or in a relationship or in your career. Again, you can always just quit tackling any adversity at any time – and if it’s obviously tough, no one will fault you.

Yet, here’s the universal truth when you have the courage not to quit: if you’re brave enough to tackle adversity, you’re brave enough to overcome it and succeed.


By Mark E. Smith

Endings. Where does one begin? Yes, that’s a haunting double entendre because the question is just that: Where do endings begin and where do we begin with endings?

Over the holidays, I was at my friend, Brett’s, house visiting his parents. I haven’t been there since he passed away last year of multiple sclerosis. I think I assumed Brett’s absence would be clear because, after all, he’s passed on. Yet, as I strolled along the sidewalk leading to his house, I looked up to his bedroom window – the room centered around a hospital bed, computer desk, his artwork and assorted eccentric collectibles – and I felt he was there. I realized in that moment that the end of Brett’s life that I’d assumed at his funeral, wasn’t. What, then, had changed with Brett’s passing?

Upon entering the house, I saw pictures of Brett in his trademark professorial glasses, and his artwork, and his room. We all ordered Chinese food just as before, and Brett constantly came into the conversation. Where was the end, the part where Brett was gone forever?

Brett wasn’t gone. He was there with us in very real ways. No, his mother can never hug him again – and I don’t know how a mother deals with that kind of pain – but I realized that evening that Brett will always be present with all of us who knew and loved him.

When it comes to life and death, where are the endings? Of course, we all know that there are no real endings, not even with one’s passing – it all carries on with us. Life is a journey and although the path may change, the experiences, memories, the impacts made on us never end – they merely evolve as our path continues.


Mark E. Smith

I’ve spent my time on Manhattan’s Upper East Side, Park Avenue. I’ve parked my van in the garage that serves 720 Park Avenue, the building with the highest concentration of billionaire residents in the world, where the cars around me were Bugattis and Hennesseys – cars that cost more than homes. And, I’ve played with my kids in the park along 5th Avenue, where the only guardians around us were au pairs wearing designer clothes, carting kids around in Mercedes and Porsche SUVs. It’s seemed both comfortable and unfathomable to witness such wealth.

However, Park Avenue doesn’t stop at the Upper East Side. No, it picks up again in Brooklyn, among the poorest congressional districts in the United States. And, in my experience, among the wealthiest, too. See, in Brooklyn, wealth is everywhere. You can stop anyone virtually anywhere and they’ll point you in the right direction, offer you a bite to eat, carry your bags. The African Americans, Hasidic Jews, Latinos and Caucasians live, for the most part, as brothers and sisters – race, religion, ethnicity, social economics don’t matter on the streets of Brooklyn. If you’re there, someone will help you out, sharing what they know, giving you what they have.

Park Avenue, from Manhattan to Brooklyn, has taught me that wealth isn’t about what you have. Rather, Park Avenue has taught me that true wealth is about what we share.

Matt Fraser

Matt Fraser

By Mark E. Smith

Matt Fraser isn’t afraid to be nude. He also isn’t afraid to appear on stage at venues ranging from off-Broadway plays to movies to television shows, including this season’s smash hit, American Horror Story: Freak Show. And, his fearlessness doesn’t end there. Matt is a Black Belt, a forever-charming ladies man and even a BBC radio show host.

However, here’s the single most important aspect to the success in Matt’s life: Matt Fraser isn’t afraid to be Matt Fraser. He presents himself with authenticity and doesn’t give us any other choice. We either accept Matt for who he is – disability and all – or move on.

How many of us struggle or have struggled with being who we are? Maybe as children we behaved a certain way to please our parents that wasn’t authentic to our identity. Maybe in high school, we caved to peer pressure, not feeling safe to truly express ourselves. Maybe in our careers, we squelch our personalities to fit a corporate norm. And, how many of us have curbed our behaviors, feelings and wishes to please a partner? Indeed, we’ve all been there. Yet, here’s my question for you: Have any of these scenarios worked for you in the long term?

Of course not. It’s never worked for you or me because whenever we’re not 100% authentic, parts of us feel inadequate, denied, undesired, squelched – and that’s painful. However, if you want to avoid such a terrible fate, just be yourself! It will feel risky and scary at first, but soon it will feel liberating, the freest you’ve ever felt. Now, some in your life won’t be able to handle the real you because they’re used to a watered-down, squelched version. But, your world as a whole will feel anew, fresh air filling your lungs as never before.

I remember being in my 20s and very self-aware. I watched carefully what I said to whom, and although I often had zany, witty thoughts pop into my head, I rarely uttered them, fearing I’d sound uncouth. My brother, on the other hand, who shared my wit, said anything to anyone, and I observed how charmed others were by his authenticity. With my brother as an inspiration, I slowly let my authentic voice come out – I’d say exactly what I wished on stage and in witting – and that’s when my career took off in every direction. It was time for me to be… well… me.

Some two decades later, being Mark E. Smith is a blast. I mean, if you’re an adult and ask me, “What happened to you,” I’m not going to give you a politically-correct answer about cerebral palsy as I would have in my 20s. Rather, if you’re an adult ignorant enough to ask me that question at an airport or such, I’m going to be me and you’re getting a one word answer: Quaaludes!

Each of us were born to be who we are, and assuming we’re healthy individuals, we owe it to ourselves and those around us to simply be who we are. Society, partners, and you name it may try to squelch who you are. But, your obligation is to be a Matt Fraser and live your life beautifully, exactly who you are, never compromising your authenticity – and the world will embrace you.

Son House

Son House

By Mark E. Smith

When I attended San Francisco State University’s creative writing program, we were allowed to focus on the genre of our choice. My peers mostly focused on poetry, fiction or full-length feature writing. I was the only one in my class, however, who focused almost exclusively on the short-short story, a genre others found too difficult because of its inherent limitations. Whether writing autobiography or fiction, I loved the constraint of having to tell a story – convey a profound message – in 1,000 words or less (that’s no more than two typed pages). The constraints of the short-short form, I found, made me maximize what I had, it made me more creative because I had to learn ways to do more with less.

Of course, looking back, I simply grabbed onto what I knew based on growing up with disability – that is, I was really good at taking limitations and using them to utmost potentials. Constraints, you see, don’t box us in; rather, they challenge us to find innovative solutions to work with what we have. I’ve never found that ease or excess bring out our full potential. However, constraints and limitations do. I know that it sounds counter-intuitive, but if you want to grow, work within limitations.

The way I learned really quickly how to manage money was by being broke. Again, I know that sounds counter-intuitive – how do you manage money that you don’t have? – but what being broke is really about is expertly managing the money that you do have. It goes right back to disability experience, doesn’t it? I focus on what I have, not what I lack.

I was grocery shopping with my daughter recently and we encountered a sort of mirror image of us at the grocery store – a presumed single father and two daughters. In his hand, he had a grocery list and a calculator, adding up the cost of items as he went. It was a familiar sight because I’ve done that. When you have financial constraints, you find ways to do more with less. In that moment, that gentleman was a financial wizard compared to many with far more money because each of his dollars was wisely watched and allocated. Attentiveness and creativity filled his cart beyond financial limitations. Again, limitations bring out the best in us.

One of the greatest blues songs of all time is the mid 20th-century, “Grinnin’ in Your Face,” by Son House. In conceiving and performing the song, House had the ultimate constraints: no instruments and no formal musical training. How do you make an iconic song with none of that? Yet, by working around those constraints, he created a soul-penetrating song using just his voice and clapping, setting time to what sounded great to him. House found the ultimate instrument within the ultimate limitation: he used his voice and hands. Contemporary musician, Jack White, noted about House’s classic piece, “I didn’t know you could do that, just singing and clapping. It said everything about rock ‘n’ roll, expression, creativity, art – one man against the world.”

If we look at ourselves as writers, single parents, musicians, those with disabilities, and on and on, it’s amazing what we can do within constraints grinnin’ in our face. What’s fascinating is that constraints don’t limit us; rather, they inspire creativity, help us find better ways, and ultimately foster personal growth. However, what living with limitations truly does is empower us to realize that we don’t have limitations after all.


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.