I remember my first day in San Francisco State University’s creative writing program years ago. It was a big deal to get accepted into it, and as I sat in my first class, I was undoubtedly surrounded by some of the best and brightest – especially since now they’re running magazines, managing newspaper syndicates, and publishing best-selling novels. But, on that first morning, rather than an inspired welcome by our department’s head celebrating our admittance, we were told that we were merely legacies of the past, void of originality, that all worth writing had already been written, that we were kidding ourselves if we thought that we could contribute anything but mimicry to the literary canon.
Of course, I knew that the department head was just trying to shake us up, seeing if we had the guts to put ourselves out there when it came to trying to find our individual voices in a craft so heavily populated with historical talent. However, her words stuck with me, not relating to writing, but to disability experience: There’s nothing original about succeeding with disability – it’s already been widely accomplished, and there’s nothing intrinsically unique about any one individual’s experience. And, there’s tremendous inspiration in that reality.
This year, I had among my most amazing summers. No, I didn’t take an exquisite vacation – in fact, I’m not sure that I even took a day off of work. Rather, what made my summer so extraordinary was that I was on the road almost every weekend, jumping in the van or on a plane on Friday nights or Saturday mornings, shooting off to remarkable events, speaking in front of groups and having one-on-one dinners with intriguing people, all relating to disability experience in some way. And, the life stories that I witnessed along the way were emblematic of so many ordinary folks simply succeeding with disability:
A 40-something mother, who likely won’t experience another summer, told me that she’s using her rapidly-progressing ALS to teach her children about the joys of living, not the sorrows of dying.
A young lady with spina bifida explained to me that she’s been on over 20 job interviews in her field this year, all to no avail. When I asked if she was getting disillusioned in her job search, she smiled and said, “No, I’m just getting warmed up.”
A gentleman who dove off of a dock, into three feet of water, resulting in paralysis, told me that when he came out – of the water, of the rehab, of the depression – he found himself sober and better for it for the first time in twenty years.
A six-year-old girl with cerebral palsy told me that she can’t wait to receive her new power wheelchair. And, when I asked what she was going to first do with it, she replied, “I gunna dance with my sisters.”
It’s amazing how when you get out there and meet people with disabilities, of all ages and backgrounds, you realize that so many are living successful lives, a contrast to statistics or bummed-out posts on Internet message boards. What’s more when you delve deeper, getting to know those living successfully with disability, a pattern emerges to their success: There’s no magic, talent, or originality to it. Living successfully with disability is simply intrinsic to our humanity.
No, I’m not saying that everyone draws upon their capacity to thrive while living with disability. In fact, some entirely convince themselves that disability is destroying their lives, that their self-pity and bitterness is completely justified, while still others have misaddressed psychological or emotional conditions that prevent disability acceptance or optimism, as well. Yet, their defeated rhetoric manifests itself all the same:
When you live with ALS, every tick of the clock means that you have one less minute to live – that makes living with hope and optimism impossible.
When every job interviewer shuts the door on you because you use a wheelchair, it’s impossible to continue.
Why should I stop drinking? Since my accident, I’ve got nothing left to live for.
I wish I wasn’t in a wheelchair, so I could dance like the other kids.
Of course, none of the people who I remember so clearly from this summer took such self-pity routes, and rightfully so. Again, if you really get at he heart of disability experience, taking the negative route goes against our humanity. From birth, we’re wired with tremendous survival instincts, and when we face challenges, we rise to the occasion. I think of the flooding throughout the southern U.S. in recent years where people hustled to prepare for storms, rode them through, and lost almost everything in the process. Yet, with little more than the clothes on their backs, they’ve had tremendous optimism toward rebuilding their lives. What we see time and time again is that we are indomitable survivors, where resilience proves itself as the core of who we are.
Now, I know that rebuilding a house or even an entire town after flooding doesn’t equate to living with a profound disability. However, my point is, we all face storms; but, more importantly, we all have the innate ability to weather them, riding them with grace and dignity no matter how they impact our lives. In this way, there’s nothing original about living successfully with disability, as people accomplish it everyday, moving forward with positivity, dignity, and resilience – the very capacities we’re born with.
This realization is so important because it allows us the clarity needed to pull ourselves out of the self-pity trap. When one looks at those who successfully live with disability as exceptions to oneself, it simply serves as a justification for one to continue living in defeat. However, once we realize that successfully living with disability is, in fact, commonplace, we’re forced to ask ourselves a question of ultimate accountability: Many others are succeeding with disability, why aren’t I?
And, it’s at that point where we can then stop looking to outside factors as excuses, and start looking to ourselves for solutions, where we actively shift from self-pity to empowerment. In this light, when we find ourselves feeling depressed or defeated, we then know to seek support from peers, counselors, doctors, and pastors because we realize that disability, itself, simply should not be defeating us – that is, there’s work to be accomplished, success to be achieved, and we must get to it.
Interestingly, I asked the mother with ALS how she so optimistically focuses on living during a stage when medically she’s withering, whether she thought that her successful outlook was unique to her or something that we all share? “I’m going to die once,” she told me, “but, till then, I get to live every day. Only a fool would stop the celebration of life early, no matter the circumstance.”
What a beautifully unoriginal thought – unoriginal in the way that we can all practice her outlook, and live every day successfully, with disability or otherwise.
You are simply amazing…not just for what you accomplish on a day to day basis, but for continually nudging, inspiring, encouraging others to be the best that they can be. Thanks, Mark. You sure inspire me.
Moving and inspirational: thank you for sharing.
Fighting the urge to lie down and die and continuing to live every day as best we can is a characteristic of my closest friends. Being around people who are excessively negative, no matter what their reason, is too draining: I don’t mind someone venting about difficulties in their lives, but if they can never see the good in their life, or never take on their problems, then the desire for conversation, the desire to listen and be supportive, runs out.
Thank you for reminding me why the fight is worth continuing.
sHi Such a lucid way to communicate an unoriginal thought! your language and play of words makes me call you a ‘wordsmith’
The quotes of people you met narrated in your article, brings them to life in front of us. Thanks for the positive message.