Echoes of Willowbrook

By Mark E. Smith

When one discusses “institutions for those with disabilities,” Willowbrook State School must come up. From 1947 to 1987, Staten Island’s Willowbrook was among the nation’s largest facilities for children with disabilities – and, ultimately, among the most horrific. In a February 1972 article, Time reported, “[Willowbrook] resembles Sartre’s vision of Hell. Bare and high-ceilinged, its walls covered with flaking green paint, the room is redolent of sweat, urine, excrement – and despair.”

In the 1960s, children with disabilities at Willowbrook were intentionally given hepatitis as medical experiments, and by the 1970s, they were subject to unimaginable neglect and abuse. In 1972, a then-29-year-old Geraldo Rivera performed an undercover news investigation of Willowbrook that awoke our nation, showing how the institution housed 5,000 children and teens in a facility for 2,000, in unimaginably repugnant conditions. He showed how residents were neglected, treated literally as caged animals in some cases. He showed proof of ramped physical and sexual abuse by staff members. And, he showed how some of the residence, placed there as infants by scared or coerced parents, had absolutely no reason to be there – that is, they were children with misunderstood disabilities that didn’t effect their cognitive skills in any way.

As Willowbrook’s population was described in the Time article, “By night, the children, many of whom have physical handicaps as well, sleep in closely spaced cribs. By day, they sit strapped into special chairs, recline in two-wheeled wagons that look like peddler’s pushcarts or lie listlessly on mats on the floor. Some of the youngsters weep or grunt unintelligibly; most make no sound at all. Children with severe physical handicaps but normal intellects share the accommodations; families unable to care for them have made them wards of the state.”

In the mid 1970s, based on the media’s exposure, and subsequent public outrage, New York state began cleaning up and shutting down Willowbrook. But, it was too late – countless children died from neglect, and those who survived were so underdeveloped and traumatized that most were unable to ever lead normal lives, merely transferred to new facilities, where very few Willowbrook residents are alive today.

Willowbrook, in fact, was such a horrific case study, that the federal government enacted the Civil Rights of Institutionalized Persons Act of 1980, hopefully ensuring that another Willowbrook could never occur. And, in 1987, Willowbrook closed its doors permanently.

Here we are some 21 years after the last doors of Willowbrook shut, and while literal facilities like it no longer exist – Gothic, echoing institutions now replaced by contemporary “centers,” “homes,” and “schools” – the children still do exist, only in a new generation. Across this nation, children with disabilities remain “institutionalized,” tucked away from society, where we know that neglect and abuse remains, as with the ongoing reports on Texas’ state “schools” for the disabled, where incidents have been most notably flooding out of its Denton facility, to the sum of 10 deaths and 60 questionable injuries of residence in the last nine months alone. To paraphrase what a retired facility director recently told me about care facilities in general, any time that there’s a large group of residents with complex needs, cared for by low-paid, unskilled workers, with high employee turn-over rates, and a lack of family involvement, residents are at tremendous risk for abuse. From Willowbrook to Denton, the locations and generations change; however, unspeakable crimes against our society’s most vulnerable – children with disabilities – remain.

Now, the fact is, not all care facilities are bad, and many provide absolutely necessary long-term care for those with multiple disabilities, some well beyond the care that even the most dedicated parents and in-home caregivers can offer. Surely, such facilities are needed and they are unquestionably humane, ensuring the health and safety of residents.

However, as someone who’s visited several “schools for the disabled,” what weighs heavily on me are the children who I’ve seen who simply shouldn’t be there – that is, children who are “institutionalized,” not based on disability, but based on what can only be explained by the inexcusable lack of accountability and humanity of some parents – and a system that supports such poor behavior.

The fact is, in every facility that I’ve visited, I’ve seen children, adolescents, and teenagers with no cognitive disabilities – that is, they have no mental disabilities whatsoever – where many of these children had non-critical medical necessities, either. Some of the children had cerebral palsy, some with muscular dystrophy, and others with forms of dwarfism – not medical reasons to “institutionalize” children under any circumstance in today’s world. Of course, I’ve confidentially asked workers why certain children were in a given facility, why a child with cerebral palsy, with no cognitive difficulties or complex care needs, for example, would live at a “school” with others of multiple disabilities, surrounded by chaos, isolated from a normal childhood? “I’ve had a parent tell me flat-out that her handicapped kid didn’t fit with their lifestyle,” one worker explained to me.

It’s striking to think about the potentials being lost – and the exposure of risk – from physically disabled children being “institutionalized.” In 2008, it needs no explanation that children with physical disabilities live fully-integrated, productive lives, where they attend public schools, graduate from college, and go on to successful careers. What’s more, there are more in-home support resources for families with a disabled child than ever before. There’s simply no reason why any parent or culture should allow a physically disabled child to whither in an institution – all potential and dignity stripped – in the United States today.

Indeed, this is a very personal subject to me, both as an individual with a disability, as well as a parent. As an infant with a severe disability, in the era of Willowbrook, my course was set by my own doctors for institutionalization. No, my parents weren’t educated, or sophisticated, or even emotionally healthy; however, they were decent enough people at their cores to know that under no circumstance did you place your physically disabled child in an institution. It wasn’t that my parents were martyrs, or saints, or extraordinary in any way; rather, they simply had basic humanity.

And, I have to ask, where’s the humanity in the parents today who have so much more going for them than those families of 40 years ago facing raising a child with a disability, yet, they’re still placing their physically disabled children in institutions? How does any parent explain to their child with cerebral palsy, muscular dystrophy, or dwarfism that his siblings get their own bedrooms, get to attend school, and get to celebrate Thanksgiving with Grandma and Grandpa, but he’ll be living in a facility three states away with strangers caring for him, surrounded by those with multiple disabilities, likely neglected and abused at some point?

Typically, such parents answer the question by convincing others that placing their child in an institution is their only choice, that it’s unimaginably impossible to care for such a child. However, such justifications by parents is a complete and total self-serving cop-out, a shunning of their obligations, a lack of parental accountability. As I always point out, if it’s so impossible for parents to care for physically disabled children, how are hundreds of thousands of parents doing it every day?

With humanity and accountability – that’s how. In a poignant twist, I’m not a parent who has a child with a disability, but I am a parent with a disability who has a child. And, as a father, I can’t fathom doing any less than whatever it takes to care for my daughter in the healthiest forms possible – that’s my obligation. In this way, I can unquestionably empathize with the anguish of parents who must put their children with multiple disabilities in care facilities, while I conversely have no capacity to understand how any parent of a fully-cognitive child with a physical disability could elect to effectively institutionalize them? Again, my daughter doesn’t have a disability, but even if she did, the rules wouldn’t change: As a parent, my role is to treat my child with unyielding dedication, fostering all of her potentials in life – regardless of disability or otherwise. And, it’s clear that some parents need to place the welfare and upbringing of their children above their own wants, looking at a child with a disability not as a burden, but as just that, their child.

Supposedly, the doors of Willowbrook closed 21 years ago. However, clearly, they still haven’t been entirely locked.

Your Own Plate

By Mark E. Smith

It seems like a never-ending debate in disability culture: Which forms of disabilities prove “easier” or “harder” to cope with, life-long or later-in-life, static or progressive? For example, I’ve heard some who received later-in-life, progressive disabilities say that those with life-long disabilities have had the opportunity of experiencing disability their entire lives, making it an “easier” experience. Then, I’ve heard those with life-long disabilities suggesting that those with later-in-life disabilities have had it “easier” in that they at least had the opportunity to experience an unencumbered life for some time, as in growing up without disability.

From my perspective, the debate on both sides is absolutely ludicrous – maybe even macabre? After all, what it really implies is that one origin of disability is more preferable than another, which begs the question of, how does anyone rationally come to such conclusions that one disability experience is intrinsically “better” or “worse” than another based on diagnosis or duration of disability, and how does forming such conclusions help one’s own disability experience?

To put this question in even more dramatic terms, how does a person decide whether it’s “easier” for one to go through one’s teen years with profound cerebral palsy, or go through one’s 40s with progressing multiple sclerosis, for example?

Of course, no healthy, understanding person could make such a choice, as both paths can prove emotionally harrowing. However, people do, in fact, rationalize that there’s a clear winner – that is, they justify in their own minds that one disability experience, based on diagnosis and duration, is somehow a universally “easier” or “harder” experience than another. But, how on Earth could anyone come to such a blanket conclusion?

The answer is, because coming to such a conclusion – that one disability experience is somehow universally “easier” or “harder” than another – is entirely self-serving, both in positive and negative ways.

Toward the seemingly positive – and, I note “seemingly positive” because this perspective can be based in pity, as well, which is really a negative – some find greater comfort in their own disability experience by believing that they are more fortunate than others, where they perceive others as having an inherently rougher plight based on diagnosis and duration of disability. I’ve heard people say, “I may have M.S., but I can feel for those who’ve had life-long disability. At least I lived much of my life able-bodied.”

Conversely, some negatively rank their own disabilities against others’ to create an explanation for feeling defeated by disability. “Oh, sure, others have a positive attitude toward disability, but they’ve lived their whole lives with disability – they don’t know how hard it is for someone like me going through it in my 40s,” I’ve heard.

At some point, though, if we’re going to succeed with disability, we need to get honest with ourselves and realize that defeat or success with disability isn’t about any single diagnosis or origin, but about our individual abilities to cope with all of life’s challenges, moving our lives forward no matter what life presents. Of course, based on our backgrounds and how mindful we are toward our present lives, some people are more adept than others at coping with life’s challenges as a whole, regardless of disability. In this way, we react to life’s challenges based on who we are as individuals, not based on who we are as disabilities, and we have an obligation to recognize others – and ourselves – beyond diagnosis or duration of disability when it comes to coping skills.

In my own experience, I’ve known people with life-long, static disabilities who have lived lives of defeat, never coming to terms with disability; however, I’ve also known those in that situation who have lived lives of enormous optimism and success. By parallel, I’ve known those who’ve received later-in-life, progressive disabilities who have experienced nothing more than sorrow and grief; however, I’ve also known those in that situation who have been elevated with purpose and hope. Reactions to disability are, then, based on the entirety of the individuals encountering them, not universally defined by diagnosis or duration of disability.

Still, some remain focused on using others’ diagnoses and durations of disability as a way to gauge their own plights. “Sure, that woman who’s a double leg amputee has a terrific career, she’s not a quad like me,” one might justify. Yet, in the most literal sense, others’ diagnoses or duration of disabilities truly have no consequence toward our own, so it’s pointless to rank our own disabilities by comparison to others’ regarding how we should cope with them. As I would tell my daughter, it doesn’t matter what the other kids in the cafeteria are eating for lunch – some mothers pack cupcakes, and others pack spinach for their kids – you still need to eat what’s on your own plate.

Now, some might ask, “Mark, doesn’t denying that some disabilities are a universally tougher plight than others demonstrate a complete lack of empathy?”

Not in the least. In fact, not making presumptions toward one’s ability to cope with adversity or succeed based on diagnosis or duration of disability recognizes everyone’s plight with an equal degree of respect and expectation. Sure, some disabilities are more physically impacting than others; however, we shouldn’t assume that as a gauge to predetermine one’s overall outlook toward life, neither toward the positive or the negative. Instead, we have an obligation to see all individuals as people – including ourselves – not merely as diagnoses, recognizing that we all have a remarkable capacity for resilience and growth, just as we can elect defeat, where we ultimately have the ability to define the foremost directions of our lives, regardless if it’s on two legs, using a wheelchair, or relying on a ventilator. After all, while we can’t control our disabilities, we can control how we live with them.

In my own life, I’m very fortunate to find inspiration in many successful people who dedicate themselves to the spirit of life, committed to family, career, and community. And, many of my successful friends have disabilities, some life-long while others are later-in-life, some static while others are progressive. Two such friends are one who happens to have life-long osteogenesis imperfecta, and works in management in Silicon Valley, while another has progressing multiple sclerosis, working as an English professor at a university in Florida. Both of these friends have demonstrated to me that it doesn’t matter what my disability is, or when I received it – it’s a positive, resilient mindset and a passionate pursuit toward my goals that, above all else, defines my ability to live a successful, fulfilling life.

What I’ve learned is that defeat and success aren’t based on diagnosis or duration of disability – that is, one’s disability doesn’t intrinsically dictate misery or happiness, failure or accomplishment. Rather our abilities to face small and epic challenges alike in life are based on our practiced coping skills as people, just like those needed by everyone else when facing what most label adversity, disability-related or otherwise.

From this perspective, it becomes clear that it ultimately doesn’t matter how, when, or why any of us landed in this boat called Disability; what does matter is that if we’re going to succeed in life with disability, we must stop comparing the storms that landed us each here, and pick up an empowered oar to start rowing our own lives in the directions we wish – again, just like everyone else in pursuit of a rewarding, successful life.

Ace in the Hole

By Mark E. Smith

I recently finished reading a new report on the state of those living with disabilities in America, funded by the United Cerebral Palsy Association. And, the portrait that the report paints of our lives is grim:

Those with disabilities are one-half as likely to have completed high school, and only one-third as likely to have a bachelor’s degree, as those without disabilities

In 2005, the median annual household income of working-age Americans was $61,500, whereas it was only $35,000 for households of working-age Americans with disabilities – a deficit of more than $26,000

Adults with disabilities are almost three times as likely to live in poverty as people without disabilities

62% of those with disabilities are unemployed

Only 7% of those with disabilities own their own home, compared to 69% of the general population

Indeed, reading the report’s statistics is disheartening. However, buried in the middle of the report, on page 43, I discovered a single, understated paragraph that voids virtually every grim statistic about living with disability in America, literally defining the key to success:

The good news is that students with disabilities who earn a bachelor’s degree find roughly the same success as their non-disabled labor market competitors. Baccalaureates with and without disabilities had generally comparable employment rates and salaries, and they enrolled in graduate school at similar rates, at least within the first year after earning a bachelor’s degree. Thus, clearly workers with disabilities can compete successfully in the labor market if they have a post-secondary education.

Think for a moment about the profoundness of that quote: The minute that we receive a bachelor’s degree, we even the playing field for those of us with disabilities among others in the job market. What’s more, what that really means is that the single accomplishment of a 4-year college degree not only allows us to find a job, but an equal-paying job, where we then are removed from poverty, where we can buy a home, where we have access to health care, where we escape virtually every grim statistic of those with disabilities living in America today. That’s a profound life lesson, an ace in the hole that breaks us free of many the barriers and hardships that can come from living with disability.

Make no mistake, I came to this realization myself years ago, simply by taking a quick inventory of my friends with disabilities, recognizing that those with disabilities who were educated achieved tremendous success in their careers, whereas those with disabilities who had no college education generally existed on SSI, living in poverty. In fact, in my book, Making the Most of It, I discuss the reality of disability as a sink-or-swim proposition for most, where we either excel or we struggle, with little middle ground in-between.

From this perspective, there’s truly no question of whether we, as those with disabilities, should pursue education: We must. No matter if one is 18 or 48, if one wishes to compete in the workforce – to escape poverty and all of the traps that it contains – a four-year degree, at minimum, is key.

Sure, one can tout all sorts of entrepreneurs in history who became tremendous successes without formal educations; one can assert that one doesn’t need a formal education to be a productive member of society; and, one can even claim that stating that everyone with a disability should have a college education is an elitist attitude. However, such statements don’t account for the reality of America today for those with disabilities: One needs a college education if one wishes to compete and succeed in the job market.

Fortunately, many with disabilities have remarkable opportunities to attend college, including financial incentives over many within the general population. Every state in the country has a vocational rehabilitation program intended to foster employment of those with disabilities, including paying college tuition in most cases. What’s more, vocational rehabilitation programs in many states also fund books, computers, and transportation, including purchasing adaptive vans, for those with disabilities attending college. And, those with disabilities in most states also qualify for educational grants and scholarships. Economically, it simply makes sense for those with disabilities to attend college, both in the immediate and the longterm.

Now, some may say that economics aren’t the only consideration for those with disabilities attending college, that disability, itself, can create obstacles. Absolutely. After all, imagine going through college with profound disability, where you’re unable to speak, with not enough coordination to write or even feed yourself, where you require full-time attendant care. But, people in such situations graduate college every year, going on to terrific careers – which proves that disability, in itself, is rarely a reason not to attend college. No, it may not be easy – and it can be a logistical nightmare for some – but one must do whatever it takes to get through college, where four years of struggles is repaid ten-fold, resulting in a lifetime of opportunity and success.

I know, I’m the disability dad who everyone loves to hate when it comes to when I was in college stories. I go off on tangents about how I started off with a single class at a community college, to ending up taking six classes per semester, attending extra courses during winter and summer breaks, working my way into among the best writing programs in the country. I tell how I commuted by public transportation hours each way to get to my bachelor’s program, where I was unable to use the bathroom for 15 hour stretches, where I fought pressure sores. And, I tell of getting to the point where I was urinating blood, where I had a pressure sore opening, where my doctor prescribed that I not finish one particular semester, that I check myself into the hospital immediately – to which I told him in no uncertain terms that I was fully prepared to die before I was going to stop going to classes. And, it’s all true. Sure, I was extreme in pursuing my education. However, I knew that as a twenty-something guy with cerebral palsy, I had no other choice but to go to college. That is, if I was to make it in the world, on an even playing field, I had to pursue my education no matter what it took – there was no other alternative for me as one with a disability.

In these ways, it’s clear that if we want to succeed in the workforce – and raise the bar socially, economically, and politically – those of us with disability must pursue formal educations. No, college isn’t easy for anyone with a disability, and for those with very profound physical disabilities, it can be even more challenging. Yet, again, a few years of hardships will all but guarantee a lifetime of opportunity and success – that is, college is unquestionably the best investment that we can make in our lifetimes.

If you’ve gone through college with a disability, assume the role of championing others with disabilities in their enrollment – express the importance of education to them, help them find support services, tutor them, or serve as their transportation to campus. Supporting others with disabilities who seek to better themselves through education is among the best effort that you can make toward elevating all of our lives as those with disabilities.

Of course, if you haven’t pursued formal education, now is the time to do it. In four years, you can still be exactly where you are today, or you can have remarkable momentum in life – that is, an education propelling you forward toward opportunity and success. No, attending college isn’t easy; however, considering the positive impact that it guarantees in your life, enrollment should be the easiest decision that you’ll ever make.

Our White Suits

By Mark E. Smith

Tom Wolfe, author of Bonfire of the Vanities and The Right Stuff, is a true American original, only wearing identical white suits. From a personal branding perspective as a writer, it’s brilliant – he’s trademarked his image as entirely distinctive, where no matter if you see him on television or in the grocery store, you immediately know it’s him simply by seeing his tall, lanky silhouette decked in that wild white suit.

I wonder, though, does Wolfe ever take off his white suit in favor of ordinary clothes? Does he ever throw on jeans, a T-shirt, and a baseball cap, and stroll into public? And, if he does forgo the white suit, do people treat him differently, viewing him not as the American icon of Tom Wolfe, but just as a guy named Tom?

If you think about it, disability is a lot like wearing a white suit wherever we go. After all, disability is distinctive, it brands us, it tells others who we are on some level – and, yes, for some, it dictates how they treat us. Of course, there is a difference between you and me, and Tom Wolf: He can take off his white suite, but we can’t shed our disabilities.

Yet, do we really want to take off our white suits, to shed our disabilities? I suppose that it’s human nature that all of us want to simply blend into a crowd at times, escaping our identities. In fact, I was at a disability conference several weeks ago, and while I just wanted to anonymously blend into the hotel bar one evening and relax, I couldn’t escape many folks recognizing me from my public roles – I can’t shake any of my white suits.

However, again, beyond naturally wishing momentary escapism, do we really want to shake off the white suits that we call disability?

Some might; but, those who are truly mindful don’t wish to shed any constructive parts of their lives, including disability. What I know is that every experience that we have contributes to our character, shaping how we see ourselves, how we see others, and how we view the world around us. And, if I were to shed my white suit – my disability – I would be shedding a bit of myself in the process. Truly, if I somehow discarded my disability, removing its daily experience from my life – the highs and the lows – I wouldn’t be myself, not the same father, husband, friend, or colleague. That is, shedding my disability would be giving up some of my unique perspectives, wisdoms that I wouldn’t want to lose.

Sure, I realize that some constantly tug at the sleeves of their white suit, their disability, viewing it as a restrictive device, a painfully conspicuous item that separates them from others, one that they’d rip off and run down the street naked – screaming, hallelujah! – if they could, glad to rid it from their life altogether.

However, I’m of the flair that, like Tom Wolfe’s white suit, our disabilities are an empowered tool when viewed with optimism and positivism, a testament to the strength of our character. I’ve met many whose white suits state compassion, exhibit perseverance, and demonstrate wisdom – those who understand that wearing a white suit can be an inspired component in their lives, where having experienced the uniqueness of disability makes them even more capable as parents, spouses, friends, and colleagues.

I say that if we can’t shed our white suites – and, ultimately we can’t – then we shall wear them with pride, with our heads up, shoulders back, strutting our stuff, individually saying to the world that I am someone of perseverance, understanding, and compassion, where I not only embrace my uniqueness, but that of all others.

On second thought, I bet that Tom Wolfe never takes off his white suite – because, man, wearing a white suit sure feels good.

Close to Home

By Mark E. Smith

I’ve been around so many with disabilities, and heard so many stories about how disability unexpectedly enters people’s lives – from a birth accident to a never-before-seen disease – that I’m rarely surprised by what I hear. After all, I understand that any of our lives can change in an instant.

Still, when such a life change occur to someone who I personally know, it always thought provoking.

My acquaintance, Lou, is the type of person who a wife never wants her husband to hangout with. Lou’s the frat boy who never grew up, who if you meet up with him at a bar after work, it’s going to be a long night of carousing. To make matters worse, Lou’s part-time job has been as a one-man act, singing and playing guitar at bars a few nights per week. All of this adds up to the fact that if you are around Lou, booze and chicks aren’t far – which explains why he’s the type that our wives warn us of!

But, even my wife and sister love Lou. We’d go see him playing on a Wednesday night, and he’d give into my wife’s request, and play a Bon Jovi tune, her favorite, sounding every bit like Jon Bon Jovi, even though he hated every minute of it. And, Lou’s notorious for getting my brother-in-law in ridiculous amounts of trouble, bar hoping late into the night, but my sister could never stay mad at Lou due to his jovial, kid-like zest.

In my own hanging out with Lou, I learned that he was big into mountain bike racing, so through my roles in the wheelchair industry, I know wheel manufacturers in the bike industry, too, and I was able to hook him up with a wheel sponsor, for which he was appreciative. And, I’ve even taken my daughter to see Lou play his music, where he joked around with her like a big clown with a guitar.

So, eight weeks ago, we were all shocked when we got the news: Lou was in the hospital – at a trauma center out of town, no less.

From my career, I know that one only goes to an out-of-town trauma center when something is really wrong. But, what could have possibly happened to Lou that was so serious that he was rushed to a trauma center?

Was Lou an idiot, and got in a drunk-driving accident? After all, Lou’s been known to drink more than a bit when a good time is to be had.

Or, did Lou go over the handlebars of his mountain bike, maybe resulting in a head or spinal cord injury?

These were my first two thoughts; however, neither was the case.

Lou was simply at home one evening, watching his two small children alone, when he collapsed to the floor. At 33 years old, the eternal frat boy, Lou, had a major stroke, effecting both sides of his brain – his entire life screeching to a halt in an instant.

Fortunately, swift medical care saved Lou’s life. Yet, as you can imagine, the effects of his stroke are profound, affecting the right side of his body and his speech, requiring that he uses a wheelchair. Still, Lou’s cognitive skills thankfully remain, where he wishes to return to 90% capacity, namely because he states that he was only 80% before. That’s Lou!

My sister and brother-in-law went to visit Lou in rehab several weeks ago. My sister, of course, has grown up around me and others with disabilities, and has been fighting cancer, herself, during the past year, so she certainly went to visit Lou with greater empathy than others might posses, understanding how life changes in an instant.

Interestingly, my sister shared with me that Lou asked how I was. I couldn’t help but wonder if, now in his own wheelchair, Lou thought about me and my disability in a different light? I mean, was he asking about me as just another friend, or was there some understanding that, as the only guy in a wheelchair who he knew, I might somehow understand what he was going through?

On the other hand, what was I to say to Lou? I knew realities that others around him might not, that the obvious symptoms from the stroke were just a small piece of the puzzle, that he likely has a long road ahead of him, probably filled with frustrations, financial hardships, and stress that he’s never known. Yet, with perseverance and strength – that is, an understanding that life doesn’t knock us down without presenting us the opportunity to rise even higher than before – he could also not only get through these toughest of times, but even find a clarity within his life that would inspire him toward new directions of growth, empowering him to greater roles of success as a father, husband, friend, and colleague. Was this the talk to have, sharing with Lou that the fundamental key to succeeding in his situation – in any of our situations – is not to dwell on what we’ve lost, but to value where we are and focus on where we’re going?

Yet, I also understood that Lou was still Lou, and who was I to presume that he needed anything from me other than what had always been our relationship – that is, as just another guy hanging out, regardless of disability?

I opted to play it by ear, and had the privilege of attending a benefit for Lou this past week. Of course, Lou is Lou, so while there was a refreshing number of others with disabilities in attendance from his rehab center, it was an overall crazy rock-n-roll bash at a nightclub, with a bunch of bands, and more hot babes and booze than I’ve seen in quite awhile – all raising funds for Lou and his children.

And, when I ran into Lou in the lobby, I couldn’t help but be myself, treating him as the guy I know, pulling my wheelchair beside his, placing my hand on his shoulder, and razzing him a bit, stating, “Welcome to the gang, brother – may you not be a life-long member.”

Even he had to laugh at my warped – but well-intended – sentiments. Indeed, sometimes the best words of support and encouragement come in the form of the sickest of humor.

The Humble Within Us

By Mark E. Smith

I’m always surprised when I meet someone with a disability who comes across as seemingly brash, egotistical, and insensitive toward others. It simply contradicts what I know as disability experience, and I can’t fathom how anyone with disability assumes any sort of attitude of arrogance when disability is so intrinsically humbling?

I mean, sure, I recognize that disability doesn’t preclude any human condition, that one with a disability can prove just as inherently dysfunctional as another. However, again, how does one not become humbled by disability, at least on some level? That is, how does one live with disability and not realize how grounded all of us truly our in our lives?

Disability experience has taught me that as successful as any of us become, we are still intrinsically human, with real struggles and challenges, no matter who we are. Every morning, when I go through my routine to get up and out the door for work, it’s an uphill battle due to cerebral palsy, where some mornings, I feel like the process of getting myself from my bed to the shower to the breakfast table is a try-till-you-die, 5 am morning drill for the Marines.

However, there’s an affirmation to it all. I am reminded every morning that, as a man, I have limitations, that perfection and idealism will never be in my grasp – and, it’s alright. I am reminded how extremely fortunate I am to have physical abilities to at least some extent, and what a remarkable gift it is to have people in my life like my wife to turn to when I need assistance with even the simplest task like buttoning my shirt. And, I’m reminded that, as human beings, none of us are perfect, that we all face challenges, that we all need assistance at times, and that there’s tremendous value in recognizing the commonality among us.

In this way, disability gives us the gift of being humble, of appreciating the limitations that we all have, of valuing the challenges that we each face, and of how we should embrace the graciousness of others who care. Indeed, it’s tough to be arrogant when life with disability proves so wonderfully humbling.

Crazy Like Brett in the New Year

(Brett pictured with Sophia)

By Mark E. Smith

When I meet fans of WheelchairJunkie.com in-person, they always have a million questions. However, almost everyone asks one specific question, word for word, “Is that guy, Brett, on the message board, crazy?”

“Absolutely nuts,” I confirm. “I’m waiting for him to mail me his severed ear like Van Gogh.”

Of course, in real life, Brett isn’t crazy in the least – but, he is among the most inspired individuals I’ve ever had the pleasure of knowing, where he quietly strives to empower those around him, making his community a better place in the process, day after day, no matter how his life has changed.

I’m not sure how long I’ve known Brett, but my first encounters with him must have been seven or eight years ago. And, I’ve been a fortunate witness ever since to the powerful life journey that he’s lead.

In 1991, Brett was graduated with both a B.S. in biology and a B.A. in art, going on to pursue a doctorate in neuroscience. In 1997, his education goals were achieved, earning a Ph.D. from Temple University. And, in-between, Brett pursued his passion for teaching, pointing to a likely path as an inspired young professor.

However, as you, yourself, may know, there are no certainties in life, no guarantees that if we simply work hard and live well, we are assured of calm futures. For Brett, this reality was presented in the first-person when, in 1997, just one week before receiving his doctorate, he was diagnosed with multiple sclerosis.

By 1999, Brett used a wheelchair and scooter, facing the progressive realities that many with M.S. experience. As I knew Brett through correspondences and meeting up with him at expos, I saw that there were obviously tough changes occurring in his life, the ebbs and flows of romantic relationships complicated by disability, the realization of losing portions of his independence, and the necessity to make changes in his living arrangements due to his progressing condition.

Yet, the more Brett’s life changed, the more focused he became, finding safe harbor in his two truest foundations, religion and art. It was these two passions that compelled him not to let M.S. slow him, but to inspire him. In the 10 years since his diagnosis, Brett has become a fixture in the M.S. community. Not only has he played a key role in championing 21^st-century awareness for M.S., voicing the need for more research and a cure, but he’s a tireless volunteer and participant at Good Shepherd Rehabilitation Hospital in Allentown, Pennsylvania, where he helps lead the art-wellness program and raises funds through such activities as an annual M.S. Walk team. In fact, in 2007, Brett embarked on the acclaimed Faces of M.S. Mask Project, an art endeavor in which participants created plaster masks of their own faces, painted as an expression of themselves in light of the disease. Of course, with such a positive outlook, it’s no wonder that Brett is a sought-after speaker, including delivering keynote addresses at M.S. conferences.

Personally, Brett is an artist in the truest sense, his paintings coming from within, the canvas calling him, a passion that is a bit hobby, therapy, study, and vocation mixed in, recognized by galleries, showings, and patronages. And, when not volunteering or working on his art, Brett practices a deep devotion of faith, leading prayer groups and singing in his church’s choir – a clear source of his inner-strength.

Of course, Brett will tell you that much of his success comes from his not being alone on his journey, with unyielding love and support from his parents and family, as well as his best friend, Sophia, his extraordinary German shepherd service dog who’s always by his side as confidant, partner, assistant, and cheerleader.

Despite the countless lessons that Brett’s zeal teaches many of us, what strikes me most of all is that his life prove among my own foremost beliefs: Life doesn’t always work out the way we want, but if we have faith, it does workout exactly the way that it’s supposed to – that is, presenting us with opportunities to learn, grow, and empower, making a difference in the lives of many others along the way.

In the New Year, let us all strive to follow Brett’s lead. Let’s not dwell on what we’ve lost or don’t have, or concern ourselves with what unwanted life changes may come our ways next. Rather, let’s draw upon our strengths and passions, and allow them to lead us toward making a difference in our our own communities and in the lives of those around us. Let us know that although we may not be able to control what happens to our bodies, with dedication, fortitude, and perseverance, we can control the impact that we make in the world – an impact that offers understanding, hope, and empowerment to others.

Sitting Tall

After 33 years of wheelchair use, I recently got my first elevating seat. Surely, I’ve known countless people who have had elevating seats on their wheelchairs with great success, and my company has manufactured them for many years; however, personally, I just never had one.

 

Environmentally, an elevating seat makes clear sense: It gives the ability to reach high places. Additionally, with the popularity of raised tables and bars at restaurants, an elevating seat increases social access, as well as allowing one to see over standing crowds at concerts and sporting events.

 

However, what’s truly captured my interest was in the common sentiment that I’ve heard users of elevating seats convey, that being able to look others directly eye-to-eye when elevated, as if standing, was a life-changing experience, for once not having to look up to others.

 

This expressed benefit of an elevating seat changing users’ literal perspectives on the world intrigued me. I’ve always lived my life quite comfortably and assuredly by using a wheelchair at a visual height of 4-foot-something, so was I missing out on some aspect of sitting taller at 5-foot-something that I never realized – that is, would being taller change the way I saw myself, others, and the world?

Based on all of the remarkable life-changing experiences I’ve heard, I was admittedly a bit nervous elevating for the first time. After all, was I going to realize all that I’ve missed out on by not being elevated all of these years? Would my wife, daughter, and house look different? Or, would I possibly feel different about myself, having greater confidence or esteem by being at literal eye level of others?

Nope. I hate to burst your inspired bubble, but sitting a foot taller makes no intellectual difference to me. I mean, sure I can reach higher places, and being able to sit at raised tables and see over crowds is fantastic – it makes the feature well worth buying. But, perception wise, it doesn’t make a darn bit of difference toward who I am. My wife, daughter, and house look the same to me, and, in fact, I don’t visually see any difference sitting about a foot taller than usual – and I certainly don’t feel any difference.

The fact is, I’ve never felt like I look up at the world or that it looks down on me. In my everyday seated position, socially and intellectually, I’ve always felt on a level field, right down to looking people in the eyes when we speak. Some might say that my view stems from my never having walked, that if I walked, my view from a wheelchair would seem different, like others really were looking down to me. 

I couldn’t disagree more. If one has a complex emotional hang-up regarding disability, a belief that one is less of a person when sitting in a wheelchair than when standing up, of course one will view height as an issue, believing that sitting taller somehow makes them appear less disabled. However, I say that height has nothing to do with me as a person or the extent to which others perceive disability. No matter if I’m a foot taller or shorter, looking at eye level or breast level, I’m still the same person. (And, in the interest of full disclosure, even when I’m sitting at eye level, I’m still predisposed to look at breast level, but only on certain individuals – this proves that added height does not change me for the better.) 

Interestingly, I heard a gentleman note that upon elevating his seat, his wife wanted to dance with him for the first time in 20 years. It is a touching sentiment; yet, it’s completely twisted, too. His wife wouldn’t dance with him at 4-foot-something, but would at 5-foot-something – how is that a relationship to appreciate? If my wife based any of our relationship on my height, not on who I am as a husband, father, and person, I’d skip the new elevating wheelchair, and, instead, look for a new wife! 

In fact, upon elevating the first time, I asked my wife what she thought of my new stance, to which she shrugged and noted, “It looks like an elevating seat to me.” 

No, an elevating seat didn’t turn me into Brad Pitt in my wife’s eyes. But, that’s alright – she’s always danced with me no matter how short and dorky I am. 

The fact is, as terrific as an elevating seat is toward environmental access – and we should all have one for that reason – it doesn’t change who we are. Anyone basing one’s self-worth or esteem on how tall one sits is missing out on a fundamental key to succeeding with disability: We are bigger than our bodies, and it’s not what we see, but it’s how we see ourselves. Sitting tall, it turns out, isn’t about height at all.

Passed Out in a Pink Mercedes: In Memoriam of my Father

When I think of Dad, the smell of beer immediately fills my senses – I don’t think he ever didn’t smell of it. My mother often said that the reason Dad drank was namely due to my disability – but, even as a very young child, I could hardly believe that, even as much as I took the blame to heart.

In fact, somewhere along the line, my father told me stories of stealing liquor and cigars as a nine-year-old from his mother’s restaurant, getting a buzz going with his friends in a cave they dug by some railroad tracks in Oakland, California – it must have been the 1950s. By the time he met my mother in the ‘60s – he was sixteen or seventeen – he’d given up school, took to riding a motorcycle, and loaded catering trucks to get by. Soon, he was drafted to Viet Nam, where he took seemingly hundreds of pictures of himself and his buddies hanging around his base. As a child looking at the pictures, I always thought Viet Nam looked as hot and dangerous as it sounded in my school history books, as he was always pictured in a sweaty T-shirt, with a machine gun in one hand, and a beer in the other.

After Dad returned from the war, my brother and I were born, me just eleven months after my brother – and with cerebral palsy.

I truly don’t have any recollection of how Dad reacted to my disability beyond my mother’s recollection. All I knew was that like from the photos from the war, Dad always smelled of sweat and beer when he picked me up from my wheelchair to move me about. Other than that, he didn’t have much to do with me.

Among my few memories that I have of my dad from when I was a child was coming home from school one day in the third grade, finding Dad in our driveway, passed out in a convertible pink Mercedes, a car I’d never seen. There he snored, head cocked back over the seat, still holding on to the steering wheel as if driving, passed out cold in the pink Mercedes, its passenger seat full of empty bear cans and a Playboy magazine. I later learned that his boss – Dad worked as a grounds keeper for a wealthy couple – asked him to get the car washed, but somewhere he took a wrong turn, having a few beers, ending up passed out in our driveway, soon to be fired.

Dad was inevitably a well-worn drunk, unemployed, gambling, fighting with Mom, waking us up at night with drunken ramblings about the house. And, then he split, moving out of state, leaving us barely getting by on public housing and food-bank blocks of cheese and powdered milk for a time.

Once my mother remarried, Dad either called to tell us that he couldn’t see us because it was our mother’s choice to shut him out of our life, or he would promise to come see us on a certain day, at a certain time, and not show up, leaving my brother and me waiting by the window. I suppose that between the ages of eight and eighteen, I may have only seen him six or eight times, not even at my birthdays or high-school graduation.

One Christmas, though, for reasons I’ve never understood, when I was around eleven, my brother and I spent with him, and he barrowed money from us to buy our Christmas presents the day before, never to pay us back. We did have fun that holiday, turning the clocks ahead a few hours, waking him from a drunken stupor, tricking him that it was time to open presents hours before the agreed time.

It’s these few stories that have helped me come to terms with my father over the years, where if nothing else, Dad was consistent in his dysfunction. He even sobered up for a while in the mid ‘90s, and I tried to have a relationship with him, even writing about it in a book; but, it predictably wasn’t to last – not his sobriety, not our relationship.

When my brother called late one night this past April, explaining that Dad was found paralyzed on the floor of the camping trailer he lived in up in the Sierra Nevadas, I wasn’t surprised. And, when the tests came back from the intensive care unit that all my Dad’s organs were failing, that he had only days to live at best, unable to communicate, I wasn’t surprised at that, either. Yet, I was surprised when my brother found a letter addressed to us in our father’s safe-deposit box.

Dear Steve and Mark,

If you’re reading this, I’m probably dead. Just so you know, my girlfriend Georgette gets my Jeep. You can get rid of my other stuff or whatever.

Dad

My brother and I had to laugh – if nothing else, again, Dad was consistent till the end, not coming through with the words sons need to hear.

Ultimately, I have no ill regards toward Dad, having resolved any remaining feelings of rejection and abandonment through being the best father I can now be, as my brother has also done, where our daughters know what it’s like to sit down and do their homework with their fathers, never to smell beer or be left waiting by a window.

Surely, it’s somewhat ere now that my father’s gone. After all, even when estranged, there was some comfort in knowing that he was somewhere on Earth, with some possibility of meeting up again some day. But, it never was, and never will be – a real relationship with my father, that is – and I’m accepting of that.

My hope is that wherever my father is now, he’s smiling in a convertible pink Mercedes, with a twelve-pack of beer and a Playboy.

Living Bold

I like about profound physical disability what others hate about it: You ultimately can’t hide it. Clear physical disability demands living in your truest sense, as you physically are, undeniable to the world. You can buy a lot of disguises – fancy clothing, enhancing cosmetics, and other surface masks – but none vale a wheelchair, muscle spasms, or impaired speech. And, there’s liberation and empowerment to embracing such a simple rule, knowing that no matter how you dress or what airs you strives to present, you are still as you are, with your true cards on the table for all to recognize. I say that you can be better because of it – your relationships can be better because of it – where others take and leave you truly as you are, undeceived by fancy clothing, enhancing cosmetics, and other surface masks. I say, that’s living with disability – that’s living bold.