August 2012 – PowerchairDiaries

Raising Expectations

By Mark E. Smith

At this writing, my daughter is in her first week of the 10th grade. It’s unquestionably the most pivotal point in her academic career – and, make no mistake, the expectations are set high.

See, the 10th grade is where colleges begin looking at grade-point averages, curriculum, and extra-curricular activities toward college admissions – and, again, make no mistake, their expectations are set high, where they want the best of the best.

However, it’s really not the universities’ expectations that matter; rather, it’s my daughter’s expectations that matter. My daughter’s self-expectations will determine how well her school year – and ultimately all of high school – goes toward college admissions. So, wisely, she has set her expectations high, too. Her grade-point average can’t be below 3.8 and, ideally, should be a perfect 4.0 or higher (honors classes can increase it). Her expectations aren’t to cruise through high school with no forethought, but to expect nothing less than to remain at the top of her class.

Yet, here’s what’s interesting about my daughter: She’s not an intellectual genius or such – just a regular 15-year-old who happens to know that whatever expectations she sets create her success.

It’s truly a lesson for all of us: What we expect is typically what we achieve. Set low expectations for yourself, and you’ll receive dismal results. Set high expectations for yourself and you’ll achieve amazing results. My great-grandmother always said, “It’s just as easy to love a good man as it is a bad man, so why not love a good man?” Really, she was hitting at the heart of self-expectation – what you pursue is what you get, so pursue the best.

In the disability realm, I can tell you for a fact that self-expectations play the single largest role toward successful living. I’ve known those with the severest of disabilities, and those with minor disabilities – and while physicality should dictate that those with more severe disabilities should have a tougher plight, that those with minor disabilities should be more successful, it simply doesn’t prove true. We see some with minor disabilities wallowing in life, while those with sever disabilities achieve amazing success. It becomes evident, then, that the single key factor between success and failure is self-expectation. If one with a minor disability believes one’s life is over, it is – low self-expectation achieve low results. However, if one with high self-expectations believes one can accomplish anything, one can – again, high self-expectations accomplish high results.

The key, then, is for all of us to look at each aspect of our lives, and ask ourselves the vital question of, Am I setting my expectations high enough? I mean, Am I pursuing the career I’m capable of; am I pursuing the relationships I’m worth of; am I being the best parent that I can be? Most importantly, Am I setting my expectations high enough in all aspects of my life to achieve the high results I’m worthy of and that those around me deserve?

Of course, increasing our self-expectations can be scary at first. If we expect little, then there’s no risk of disappointment, right? Going back to my daughter, if she had low expectations toward her grades, a D wouldn’t matter. However, because her expectations are to achieve a 3.8 grade-point average or better, a D would be devastating. But, setting low expectations to avoid feelings of failure is flawed logic. Sure, if you have low expectations, you’re less likely to be disappointed by any failure; yet, that’s only because you’re setting yourself up for failure! Setting high self-expectations may seem like a risk for failure – and it sometimes can be in the short term – but in the long term, it’s the only true guarantee for success. Again, what we expect plays a key role in what we achieve, so simply raising our self-expectations – and putting effort toward it, of course – will bring success. Put simply, there’s nothing but risk in low expectations, as we will fail; however, there’s virtually no risk in high expectations because it ensures success at some level.

Let us each raise our self-expectations in all aspects of our lives, and live to those standards. Why? Because we’re each worth it.

Living as Josh Does

By Mark E. Smith

Twenty-one-year-old Josh has been an increasingly remarkable spirit in my life since I met him four years ago. I’ve never known a young person with such wisdom and insight, making our recent conversation par for the course based on Josh’s amazing character.

Josh was diagnosed in his adolescence with a very progressive form of muscular dystrophy. However, unlike many others with his prognosis, the disease didn’t progress as rapidly as usual – that is until approximately two years ago. In fact, when I first met Josh, he was still walking, using a mobility scooter for longer distances. Yet, in the last two years, the disease caught up with him, dramatically diminishing muscle tone. I’ve seen Josh go from drinking from a soda can normally, to struggling to lift it with two hands; and, I’ve seen Josh go from walking to not being able to transfer himself from a power wheelchair.

Make no mistake, the physical realities of Josh’s condition are disheartening. But, the lessons learned and the personal growth that’s resulted from his challenges have been inspiring, teaching us both invaluable lessons along the way.

Josh and I have traveled a lot together, working trade shows, summer camps, and advocacy events. We’ve lobbied the halls of Capitol Hill, and rock-starred it in Los Angeles. However, the heart of our friendship has been formed from our weekly phone calls, where every Thursday, Josh and I talk on the phone, tossing around subjects ranging from relationships to dealing with disability to music. My role is supposed to be that of mentor, but Josh has so much wisdom and is so reflective of the struggles and victories that we all face, that I often think I learn more from him than he does from me.

One of Josh’s recent victories – and a process that we talked about for many months – was his driving independently via an accessible van. After a year and a $120,000 in technology, Josh now independently drives a van with ultra-high-end hand controls that are closer to resembling those that control an airplane more so than a car. And, for his first long-distance drive this summer, he drove 3-1/2 hours to vacation at a lake where he vacationed often as a child.

When we spoke the week after his vacation, he explained to me that the trip was ultimately a realization for him: Most of the activities that he could do as a teen – boating, fishing, and so on – were no longer feasible or easily accomplished, that he realized in very real terms the progression of his condition.

I, of course, asked how he felt about his sudden realization of the progression of his condition? And, his answer was a lesson for all of us. Josh explained that what realizing how much his condition has progressed made him intimately understand is the importance of making the most of today because we don’t know what tomorrow brings.

I couldn’t have been prouder of Josh’s insight because it demonstrated a perspective that we should all live by: Being bitter or regretful of our pasts – or of what’s seemingly been lost – is pointless. Valuing our present – no matter the circumstances – is truly what it’s about.

Moving well beyond disability, think about how many of us dwell on past relationships, childhood trauma, lost jobs – you name it – where rather than accepting, healing, and evolving to live fully in the present, we just get stuck in the past. Josh could have likewise gotten caught in the past, returning home bitter as to what his condition has done. Instead, he recognized the past as just that – gone, done, over – and was even more inspired to appreciate whatever abilities that he has today. It’s kind of like rather than dwelling on how bad your past relationship was, you focus on how great the current one is – that’s how you move forward.

And, if there’s a single lesson that Josh teaches us, it’s to live in the present, simply appreciating all that we have today.

The Ultimate Rebellion

By Mark E. Smith

There’s rebelliousness, a lawlessness that goes with living with disability – especially when we’re doing it phenomenally well. After all, if we’re going to succeed with disability, it requires us so often to defy common logic, throw caution into the wind, and go where others would never dare. We taunt diagnoses and prognoses, and defy that which gets in our way. And, there’s a charm to it all, where even while others initially think we’re out of our league trying to pull off the seemingly impossible, when they see us do it, they realize how death-defiantly determined we are to succeed, no matter the challenge.

And, for many of us, make no mistake, death-defying ties into it – literally. Everyone says that none of us can escape death; however, some of us have, and others of us continue doing so – and it’s the ultimate rebellious spirit within us that’s enkindled. In my case, I wasn’t supposed to live past a few days after birth; in other cases, my peers weren’t supposed to live from the accident scene to the hospital; and, in yet other cases, I have friends who’ve long outlived their prognoses of progressive conditions. We all know that we’re going to die eventually, but the fact that we’ve already rebelled against it once and won is a heady start to addressing all other aspects of living. If you’ve looked death in the eyes, and mocked it – and there’s nothing more bad-ass than that! – the everyday mortal world should be a cake walk, where you write the terms as a true rebellion – and, most importantly, value what it means to truly live at a level few others dare. Break the rules, make the rules, and live life on your terms – period. Be an outlaw.