"So what is the most significant challenge you face in day-to-day life?" The question was posed to me by Ted Kennedy Jr. following a Chamber of Commerce economic club luncheon, and it caught me totally off guard despite the fact that both on his web site and in his speech he had expressed an interest in collecting answers to that very question from individuals with disabilities to inform his work on their behalf.
I work at Eastern Michigan University, a midsize public university, directing services for students with disabilities and was privileged to attend the event as the guest of our new president, John Fallon. I was in the fifth grade when President Kennedy was assassinated. I'd grown-up with the space program, and the president's fitness campaign and I remember being vaguely aware that he had a sister with a developmental disability. Later of course after I acquired a disability I learned more about the Kennedy family's commitment to the liberation of individuals with disabilities in general. In fact, much of the passion that drives my own career comes from the pride, self-esteem, and compassion that were engendered by the ideals of “Camelot.” I do not know the origin of the axiom that if one is not part of the solution, one is part of the problem but I have always associated it with that era, the Kennedy family, and the Peace Corps.
Frankly, I hadn't given much thought to the challenges in my life for a long while. Don't get me wrong. Life is hard. There is a difference between hard and challenging. Challenging implies a possibility of success, achievement, overcoming. Hard is to be endured. It just is. I am in pain most of the time. The limitations imposed by my disability are compounded by the inherent unreliability of complex technological systems (e.g. powered wheelchairs and adapted vehicles) and my reliance on cheap labor to provide the care and assistance I need to maintain my independence and productivity. If I saw all of that as a personal challenge I would own personal responsibility for overcoming it and that would be devastatingly overwhelming because there is no way that I can overcome those challenges on a personal level without overcoming them on a social level.
I've been doing this for a long time now. I have a solid network of personal assistants, and I know how and where to find reliable help. I earn enough that with a subsidy from the state I'm able to compensate them adequately, but not fairly given the importance of their services. Without the subsidy and my job I'd forced into a nursing home where the World Institute on Disability estimates my life expectancy would be about 18 months, but as long as they both continue my life works pretty well. Challenging? Not really. Stressful but not difficult, I get tired of the complexity, and instability but I simply do not have the financial resources to insulate myself any further from those realities and besides everything is relative. Over time anything can become familiar, seem normal and my life to me is just that ordinary. And on a comparative basis it all depends on your point of reference, "challenging" as my life might be, on a global scale I live a life of relative ease.
If there is a challenge it is in maintaining the emotional energy to remain positive and keep believing that things will continue to become easier in the face of the constant erosion of self that it requires to be dependent on others for so much. Good personal assistants, like good professionals in any field care about what they do and want to do a good job. They put themselves into their work and that's where things get challenging. Imagine needing to negotiate which parts get washed in what sequence when you shower, or getting your hair just right when you can't demonstrate exactly what you want done. Sure there's always the option of requiring strict adherence to a written protocol but generally that has the effect of diminishing the care and enthusiasm committed people bring to a job and often results in high of turnover. By the time I get to the office, I've been doing direct supervision for three or four hours. And once I'm there, there are other professionals and a half-dozen student workers to supervise, not to mention committees and councils and a whole world that runs on compromise. Challenging, maybe. I prefer to think of it as an opportunity.
There is no doubt expectations influence outcomes and if I see my life as challenging, it will be challenging. If I see it filled with opportunities, I will experience opportunities. That's how I manage my disability I look for the opportunities it presents. My disability affords me an appreciation of the fragile and precarious nature of life, and the importance of living each day and each moment to the fullest. Many of the attributes I like best in myself have developed directly out of the realities of my disability. My career and the opportunity to make a difference, to be part of the solution, come directly from the experience of my disability.
Several years ago I began extending my search for the opportunity inherent in disability into my work. Curb-cuts and power door operators seem like obvious examples of how the inclusion of persons with disabilities benefits nondisabled people as well in our society. I am a firm believer that as we become more accessible and more inclusive we all benefit, disabled and nondisabled alike. Recently I had been advocating for additional resources to encourage students with disabilities to become more involved in the recreational and intramural opportunities on our campus and to support their participation so when the invitation from President Fallon arrived, I was ecstatic. Instantly I saw an opportunity to present my ideas to someone who I knew would understand their compelling nature.
I also suspected that people were pushing compelling ideas at Mr. Kennedy wherever he went with the same zeal as the drug dealers I encountered in Times Square back in the 1980s, but I couldn't let that stop me. I've never been afraid of competition. For several weeks I worked on drafting a vision of how the increased participation of students with disabilities in our recreational and intramural programs would benefit them, nondisabled students, and the University community in general. Understanding the importance of brevity I manicured it down to one page. I didn't know that I would get to meet Mr. Kennedy. I certainly hoped I would, and if I did I wanted to be prepared.
The same week that I received President Fallon's invitation I'd also taken possession of a new wheelchair. The longer one sits down the more important comfort becomes and the harder it is to achieve. I was thrilled with the new chair which is the most comfortable I've had, and after 37 years of sitting down that's very important. Unfortunately it does not interface properly with my adapted minivan for me to drive. I knew that was a possibility when I ordered it, and that it would be a close call. My minivan is nearing the end of its useful life anyway. Luckily, I could still be a passenger so I'd asked a friend of mine to drive me to the luncheon, which was being held at our corporate education center several miles off the main campus. He's always late. The luncheon was at noon so I told him to pick me up at 10:30 AM.
While I waited for my ride I thought about what I would say to Mr. Kennedy if I had the opportunity to meet him. I was certain he must have people soliciting him wherever he went and I didn't want to be perceived as just another obsequious sycophant but it was worth risking that because the opportunity was so much greater than any potential threat to my pride. The appointed time came and went, my friend didn't show up. A half an hour went by, then an hour. My friend showed up at a quarter to 12. I was nearly apoplectic, at least on the inside. On the outside I managed to maintain some composure but on the inside I was totally freaked out. Here was this amazing opportunity, not only was I going to be a guest of the President I was to join him at his table, and I was going to arrive late.
We pulled up in front of the Eaglecrest corporate education center and I exited the van full speed like some sort of technological special ops commando. The vice president for communications was waiting just inside the door looking anxious but she remained cheerful and gracious as we moved briskly toward the event. It took a conscious effort to override the impulse to hurry on ahead. Just as we turned a corner, there was President Fallon talking with Mr. Kennedy as a photographer snapped pictures, and three or four other people looked on chatting among themselves. Embarrassed and flustered I felt like abandoning my mission of speaking with Mr. Kennedy about the case statement for the adaptive sports and inclusion initiative I'd been dreaming up. We spoke briefly, I introduced myself and mentioned that I would like to speak with him about a project I had in mind and then it was time for us to be seated and he to be introduced.
Once we were seated I was put at ease by the graciousness of President Fallon and his wife. I knew several other people at the table and the conversation was easy and interesting. Someone from the chamber of commerce briefly went over the agenda indicating that our speaker would be Mr. Kennedy, and lunch was served. After we ate Mr. Kennedy spoke, he was of course eloquent and his message compelling, but then with me in the audience he was preaching to the choir and I thought about the similarities between his speech and my usual shtick. There was a question-and-answer period following and then after a few closing remarks from chamber officials the event began to breakup. Immediately a line of people wanting to speak with Mr. Kennedy or have their pictures taken with him began to form. Approximately 500 people had attended the luncheon and the tables were placed closely together, without a crew of movers there was no way to get from the side of the room where we were seated to Mr. Kennedy's table without exiting and returning through another entrance. I saw an opportunity in the delay. I figured if I was last in line our conversation might be less pressured than if a line of people were waiting.
Except for the waitstaff clearing the tables the hall was pretty much empty as I approached the moment of our second encounter. Mr. Kennedy pulled up a chair and sat down directly in front of me loosening his tie. "So what's the most significant challenge you face in your day-to-day life?"
Despite the fact that he had just said during his speech that wherever he goes he likes to ask people with disabilities that question, I was unprepared to respond. I told him that after 37 years I didn't think my disability was particularly challenging, I talked about our efforts to figure out the best ways to accommodate individuals with mental illness on our campus which was something I found challenging and launched into my pitch and the importance of recreation in combating prejudice. He listened patiently and with obvious interest. He was even understanding of the fact that I had encountered computer problems that morning and not been able to print my precious case statement and asked me to be sure to send it to him but he seemed disappointed. I felt that he had very much wanted to hear about the challenges in my life, and that he expected to find in my answer something that would help him in his work to end the oppression of persons with disabilities.
It took a couple of weeks and repeated phone calls to get the e-mail address of a vice president with the management company that represents Mr. Kennedy and receive confirmation that my case statement for the adaptive sports and inclusion initiative had been given to him. That was the last I heard about the matter. It's not the first time I've let my focus and zeal run roughshod over the genuine concerns and interests of another. In retrospect, I should have been looking for an opportunity to assist Mr. Kennedy in accomplishing his agenda, not merely one to further my own. My life has never been short on opportunities to learn humility.
After several months of pondering his question, I think that the most significant challenge posed by my disability in day-to-day life is convincing others that it represents an opportunity or rather a continuous stream of opportunities: opportunities to become stronger, opportunities to be more flexible, more patient, more understanding and ultimately perhaps more human. Among the many false dualities perpetuated by our society is the notion that one is either disabled or nondisabled when the reality is that human ability exists along an infinite continuum defined by an infinite sea of variables like age, class, physical environment, and privilege. As long as we continue to think of disability as a source of challenges we will find it challenging. When we come to understand and accept disability as an inherent feature of the human condition, then perhaps we will have the opportunity to create a society that anticipates and provides for the participation of individuals with the broadest array of human abilities and characteristics conceivable.