Your Own Plate

Posted: May 28, 2008 in Delving Deeper

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.

Comments
  1. Ernie Richardson says:

    Hi Mark,

    My wife is a congenital (walking) right sided hemi-plegic. She has lived with it her entire life and says she has it easier than me. I have adult onset Charcot Marie Tooth and after becoming a wheelchair user, I then (two years later) became a left below-knee amputee due to chronic infections and venous insufficiency.

    I have known my wife our entire life – actually since we were three (we are both now 64) and I personally think she had it worse. She was tormented by school classmates about being a “Cripple”. I didn’t have any of that and lived a TAB’s life for a number of years. From my stanpoint those who’ve lived with disability their entire life have had it worse than those of us who have adult onset disability.

    Just my opinion.

    Regards,

    Ernie Richardson

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