By Mark E. Smith
I’ll never forget my embarrassment that day. I was in the sixth grade, and my school sent home another note. It may have been the third or fourth, but this one was more serious, involving the school counselor, not just a teacher’s note. Was I in trouble?
I couldn’t wait to read the note – desperate to know what it said – so on the special wheelchair-accessible school bus on my way home that day, I used one hand and my teeth to tear open the envelope, and read the note. To my horror, the school staff was again complaining to my mother that I smelled of an odor, and that I clearly wasn’t being bathed appropriately, that even other kids were complaining.
And, I knew they were right – I had horrible hygiene. Due to my cerebral palsy, I wasn’t able to toilet or bathe myself, and being dependent on my mother wasn’t cutting it. As an alcoholic, my mother wasn’t taking care of herself, let alone me, so my bathroom accidents and a lack of bathing were par for the course.
What made the note even more troubling to me was that I’d recently visited a care facility and saw teenagers living there with disabilities similar to mine – and I realized that between my cerebral palsy and my mother’s drinking, a care facility might be my own home in the near future. Based on the school’s concerns, it seemed like only a matter of time before Social Services was involved, and if they found out that my mother’s alcoholism prevented her from properly caring for me, I reckoned that I was doomed – possibly to a care facility.
I went to my stepfather for help, and he placed responsibility on me, suggesting that I’d better get my act together as a kid with cerebral palsy and become more independent or I would end up in a care facility. Call his tough love well-meaning or callous, but he simply reinforced my predicament and fears.
So, there I was: Humiliated by my body odor at school, with parents unwilling to take proper care of me, and unable to take care of myself. At 11 years old, I was in the bind of my life, a victim of circumstance.
Yet, that night, I intuitively realized that I wasn’t a victim of circumstance at all, that I was the one truly placing myself in the situation – not my parents, not cerebral palsy, not the school, but me. See, what I quickly realized that night was that I was looking at everyone else to take responsibility, when, in actuality, I was solely responsible for the whole situation.
Now, some might say, Mark, that’s ludicrous. You were a little kid with severe cerebral palsy, in a bad family situation – you were the last one responsible for the predicament that you were in. …You can’t hold an 11-year-old responsible for having cerebral palsy or an alcoholic mother.
Absolutely, I could hold myself responsible – and I had to. No, it wasn’t my fault that I had cerebral palsy or an alcoholic mother, but all of it was solely my responsibility at that instant. I was the one with the body odor, the one who couldn’t bathe himself, the one with the alcoholic mother, the one with the school rightfully concerned – and, there was only one person responsible for resolving the situation: Me.
That night, I did my best to strip off my clothes, pulled my power wheelchair up to the bathtub, and slid myself in, cracking my head on the way down, flopping like a fish, banging elbows and knees off of the sides of the dry tub. With what coordination I had, I turned on the cold water and washed up the best that I could. At last, I used all my might to thrust my body over the side of the bathtub, crashing onto the hard tile floor, bumped and bruised, but a bit cleaner. Maybe this will be easier tomorrow night now that I’ve done it once, I told myself.
As I lay on the bathroom floor that night, starring at the ceiling, nude, cold, beat-up, and exhausted, I believe that I discovered the single most important factor toward living with disability: Our choice to accept full responsibility for our lives no matter what’s happened to us, no matter our current circumstance.
It’s so easy for many of us to justify why our lives aren’t as successful as they could be:
If only I wasn’t born to a dysfunctional family….
If only I didn’t have a disability….
If only things were different….
But, when they’re not different, when life doesn’t go our way, we are solely responsible to take the actions needed to change the course of our lives. We may not create any given tragedy in our life, but we are solely accountable for resolving it, no matter what it takes.
Toward my publically-expressed disability outlooks, the singular criticism that I receive from some with disabilities is that my die-trying approach to living with disability is unrealistic, that just because I, personally, strive to practice extreme will and optimism doesn’t mean that I have the right to expect it from others.
However, where their argument fails, is that they don’t recognize that I don’t practice and teach my own philosophies; rather, I merely practice and discuss the realities of life. See, assuming absolute responsibility for one’s disability isn’t what I expect; rather, assuming absolute responsibility for one’s disability is what successful living demands. Again, we can find entirely valid reasons as to why we’re not living up to our fullest potential, as with my being an 11-year-old child with cerebral palsy and an alcoholic mother, unable to bathe myself. However, until we make the choice to push all of those reasons to the side and assume absolute, sole accountability for our lives, we merely exist and struggle in life – that is, we make excuses and don’t move forward. To put it bluntly, it doesn’t matter who made the mess; we are solely responsible to clean it up.
Maybe life hasn’t gone your way. Maybe it’s knocked you down, then kicked you for falling. Maybe you’ve not only faced profound disability, but any number of other trials, from unemployment to failed relationships to addiction. So what? The solution to any issues in your life, regardless of the breath of the challenge, simply starts with a single question: Are you willing to assume sole responsibility for it, and do whatever it takes to move forward, at any cost? After all, it’s the same question that life has demanded that I personally answer countless times since I lay nude, cold, beat-up, and exhausted on that bathroom floor.