The word inspire has probably become a bit bastardized for me. It's certainly not a bad thing to be inspired, find something inspirational or even to inspire someone else by personal deeds.
Yet, I cringe when I hear the word.
I want to recoil when I hear someone use inspire, even if they are using the word in a perfectly reasonable way. The overuse of the word in describing people with disabilities has created somewhat of a Pavlovian reaction for me. I've literally had strangers approach me at the gym, for example, to tell me that I inspire them. I'd like to report that my physique is the cause of such remarks, but I'd be lying.
Their inspiration comes from the fact that I have cerebral palsy.
Over the years, I've seen hundreds if not thousands of news stories or television programs that put people with disabilities in the role of inspirational figure simply because they are living their lives. The only job I ever quit was when I was given the opportunity to cover the disability community in a realistic way -- a concept I had proposed -- for the local section of the Philadelphia Inquirer. Articles intended to be informative to the local disability community were edited into the typical human-interest stories about the disabled that newspapers have been doing forever. Years later I regretted not quitting a two-year job with a foundation -- whose mission was supposed to be to enhance the lives of people with disabilities -- when it became abundantly clear that they defined my role as a writer in terms of being their inspiring poster child.
I was born with my disability, so maybe that explains why I absolutely cannot comprehend the mentality of individuals who don't seem capable of viewing people with physical disabilities as full-fledged human beings. With all of the political correctness in the world it may seem as though people with disabilities have achieved a level of acceptance where basic statements of humanity are completely unnecessary. But once the surface of that acceptance is scratched, they seem as needed as ever.
I am here to seek all of the same things that anyone else in the world wants, including happiness, fulfillment, success, and finding someone to love.
I'm not here to inspire you.
I've often written about my experiences living with a disability with the goal of breaking the mold of the accepted portrayal of people with disabilities being nothing more than sources of inspiration. "Unsilenced" was the title of one of the first pieces I ever had published. The fact that it was published in the literary magazine of my university was of little concern to me at the time. Writing is the one thing besides playing sports that I don't remember ever not wanting to do. To actually see my words in something that was printed, bound and handed out to people was the highlight of my college career.
A dramatic monologue, "Unsilenced" featured a high school kid who had been sent to a psychologist after having a fight. The character was highly autobiographical. He had cerebral palsy with a severe speech disability, and was rather unapologetic for finally fighting with one of his able-bodied tormentors.
The response to the story is something that I struggled to understand for years. In the weeks after the magazine came out, I received numerous compliments on campus, many coming from students who I didn't even know but had remembered me from a previous class we'd been in together.
Yet, family and close friends had nothing positive to say. The problem seemed to come from the foul language used by the character. An older woman who I felt particularly close to at the time but has since faded from my life actually told me that I knew better than to use such language. A family member said she put the story down after the first paragraph. The entire piece was three pages. Another family member dismissed it as bitterness.
Later, I attempted to write an actual autobiography. No, my ego hadn't gotten the best of me.
My intention was to examine episodes from my life in light of the disability issues that I thought those episodes raised. The book was too long, and no doubt far too boring for print. But the reaction from an acquaintance -- a former special education teacher of mine -- eventually helped me make sense of the response I had received to "Unsilenced."
I happened to speak with the person just after she started reading my work, and she gushed about it. By our next conversation, however, she'd come to hate what I had written. Her only specific comment concerned my less-than-fond recollections of my time in a special education school.
The man who gave me my first job, and became a mentor to me, would later offer some insights about why my family and friends reacted so negatively to my piece. They had a deep desire to make my life "good," he suggested, and may even have felt a responsibility to do so -- just as my former teacher apparently felt responsible for seeing that the special ed portion of my life went well. My writing about it as less than perfect in "Unsilenced" was upsetting to them.
"Unsilenced" was really about being heard. It was about how a speech disability, or more specifically the way people react to someone's speech disability, can almost dehumanize a person. In some ways it was my response to the ignorance that I had dealt with throughout my life.
Reading the monologue for the first time in years to write this introduction, I have to admit I was surprised by the amount of foul language that peppered the piece. Yet, there was a point to it. In fact, the whole purpose of the profanity was to show a character with a disability going against the idea of "knowing better." The foul language used by the character was a response to the absurd image of people with disabilities that still exists in the media today.
My hope is that the following essays find a middle ground between "Unsilenced" and the attempted autobiography. They represent snippets of my experience with a disability, thoughts and observations on a range of disability-related topics, and an attempt to pass along some advice to the younger members of the disability community. Original versions of all but one of the essays were posted on a blog called Rob Q. Ink -- Page 2. (Some editorial changes have been made in compiling the blog posts into book form.)
I've selected the essays from my blog, which almost by definition is meant to address the issue of the day if not the issue of the second, because I think they stand up beyond the moment. The previously unpublished essay was actually written for the blog, and I simply decided to keep it for the book. For me, these essays speak to the general experience of someone with a significant physical disability without any mental impairment who is still able to (or trying to) keep up in the everyday world tailored to the able-bodied. Though some of the endeavors I mentioned are now in my rearview mirror, such as the dot-com I tried to turn into a worthwhile business venture, I think the lessons learned from those efforts remain relevant within the goals of the book.
While the essays are not meant to inspire, they are meant to challenge the version of living with a disability projected by many, and talk about disability from the perspective of an everyday guy who happens to have cerebral palsy.