By Mark E. Smith
Humble is an intriguing word, one that many can’t literally define, and when they do, “not arrogant” is a definition that often comes up. If you read corporate mantras these days, virtually all companies state wanting “humble” employees, ones who presumably aren’t arrogant, and recognize that they always have room for improvement – admirable traits, of course.
For those of us with disabilities, while being humble is a great trait to have, we have no choice but to endure the “humbling” – and there are profound differences in shifting from the adjective form, humble, to the verb, humbling, truly unveiling disability experience at a level that others rarely see.
In our public persona, whether we’re at work, on a date, or wherever, we, as those with disabilities, have the ability to appear just as humble or arrogant as anyone else. Yet, we are distinct from most others in a very striking way: We can’t escape living truly humbling lives, regardless of our persona.
What many don’t realize is that while the definition of humble is, “modest, or not arrogant,” the definition of humbling is, “to lower in condition, importance, or dignity.” And, as those living with severe disabilities, virtually all of us have struggled with the intrinsically humbling nature of disability experience at times, if not much of the time – that is, disability can make us feel very undignified and lesser than others at certain moments, no matter our acceptance or successes.
Grand Rapids-based author and speaker, Johnnie Tuitel, has flown over one-half million miles – all while having cerebral palsy and using a power wheelchair. Tuitel, poised and polished, was recently on his way from West Palm Beach to Kansas City, to speak at the National Self Advocacy Conference, and all was on schedule as he was transferred into his airline seat by U.S. Airways attendants. By all appearances, Tuitel was a successful businessman, on a typical business trip, where disability wasn’t an issue. However, all of that was about to change.
Soon, a U.S. Airways gate manager and flight attendant approached Tuitel, explaining to him that he would be removed from the plane immediately because he was “too disabled to fly alone.” According to U.S. Airway’s policy – and arguably in violation of the Americans with Disabilities Act – they do not allow those with severe disabilities to fly alone. And, the gate manager flagged Tuitel as too disabled to fly alone.
Imagine for a moment the reality of Tuitel’s situation, and how humbling it was to him, as it would be to any of us. Due solely to Tuitel’s disability, he was transposed in an instant by U.S. Airways from a man of common humanity, on the level of every other passenger, to being deemed a lesser human being, unfit to fly. In the immediate, it must have been shocking, angering, and humiliating to Tuitel; but, ultimately, it was humbling, where per the very definition, Tuitel was unjustly made of lower importance than others, with his dignity removed – simply a consequence beyond his control of living with a disability.
Indeed, many of us can relate with Tuitel’s experience of how humbling it can be dealing with the public when we have a disability, where common aspects like a waitress speaking to our companions instead of us, directly – as if our physical conditions effect our intelligence – can adversely effect our dignity. Tuitel’s experience may be shocking to some; however, for many of us with disabilities, it’s recognized as more common than we’d ever wish, where we know such humbling experiences all too well – and how they often appear out of nowhere, beyond our control, simply a consequence of living with a disability.
Of course, the humbling nature of disability isn’t only faced in public, but actually far more commonly in our personal, daily lives. As well as we cope, it’s still humbling to share the intimate details of living with disability with even those close to us. In fact, the first time that I had a girlfriend spend the night at my place was one of those times that stands out in my mind – humbling, to say the least. See, I wasn’t nervous about having intimacy with her. To the contrary, I was fired-up about that part, as most young men are. However, I was deeply self-conscious about the realities of having a woman literally spend the night in my bed with me, and to share some of the everyday realities surrounding my cerebral palsy.
Based on the fact that I couldn’t easily transfer out of bed in the middle of the night to use the restroom, I had to rely on using a urinal – in bed. So, there I was, wanting to be a handsome, romantic lover, but constrained by the realities that I was still a guy with cerebral palsy, who had to share among the most seemingly undignified parts of my life with my girlfriend if I was to take my relationship to the next level. The thought of using my urinal while sleeping in the same bed as my girlfriend mortified me, but I also recognized that it was a reality that I couldn’t avoid.
For several days before we were to spend the night together, I played the scenario in my mind: I was going to have the most romantic night ever, with me as the cerebral palsy version of Richard Gere. Yet, the reality was that I would be in bed with a beautiful young women, all cuddled up one moment, then likely having her see me use a urinal the next minute – that was a daunting, humbling realization to face.
I put off having to use my urinal as long as I could that night, till I couldn’t any longer. It must have been three- or four o’clock in the morning. And, I finally took my urinal from its hiding place in the nightstand drawer, held my breath out of mortification, and did what I needed to do to use it. As quietly as possible, I put it back in the night stand, and I lay back down, seeing her glance at me in the dawn light. She pulled the covers up, put her arm around me, and all without a mention. Somehow I had the courage to get past my extreme self-consciousness that night – but not without it being a very humbling experience, where my vulnerabilities where readily exposed.
As those with disabilities, we all go through exceptionally humbling experiences, some of which are public, and many of which we keep to ourselves, where only those closest to us know the true daily struggles that we face. Some humbling experiences are initially defeating, like Johnnie Tuitel being removed from the U.S. Airways flight. Other humbling experiences are inspiring, like my girlfriend being totally gracious and accepting of the realities of my disability upon our first night together. And, for most of our humbling experiences that we face due to disability, we eventually reach a point where we merely do what we must to get through each day, where the humbling is our commonplace, one that many never see or know of, but that we simply live – with a striking dignity to it all.