I'm heading back from the art center design conference at the moment, sitting in the airport, bone tired. It was a pretty good conference in a number of ways, interesting speakers, a wide range of topics discussed and the opportunity to see people I've come to know over the years but only see at this sort of event. As with any of experience like this, there were some very special presentations and insights I'm taking away and will ponder for days to come. Tops on that list for me was an unexpected exchange between the moderater john hockenberry and one of the last speakers of the event, aimee mullins.
john hockenberry is truly the best moderator I've seen at the many conferences I've attended in my career, bar none. He's brilliant at providing insightful analysis and personal thoughts throughout the event which serves to connect one speaker to the next and keeps the flow and energy of the event high throughout. He's also funny, charming and entertaining in his own right. And, he also happens to be a person who lives with a wheelchair because of a spinal cord injury, which on one level has absolutely no baring on anything, and yet on another more personal one, remains utterly significant for me. I remember the first time I attended this conference and watched this man command the stage with such intelligence, skill and humanity. I remember being moved and surprised in spite of myself. As a person who has struggled with the invisibility of my own health issues, it was truly a revelation to see another person whose physical differences couldn't be hidden, present to the world so wholly and comfortably in his own skin. I remember thinking that I was being offered an opportunity to learn something about my own journey with physicality through his.
Well 4 years later, this is still the case. This year the conference invited an amazing woman to present, the world class athlete, actress and model, aimee mullins, who also happens to be a double amputee. Very accomplished and stunningly beautiful, this woman who'd I'd seen from afar in many magazines and art pieces, was a real force of nature in person. Self confident, strong and positive without being pollyanna or denying of what her physical experience meant, I found myself rivetted by her talk. Again, like 4 years before, I felt as if I was being offered a rare opportunity to learn about my own physical challenges through another person's experience and view. And that felt powerful and precious, like a gift being presented to me by the universe.
But, I'm getting a bit ahead of myself. Before ms. mullins spoke, mr. hockenberry introduced her as he had done with all the other speakers. But this time, unlike the others, he began with a personal story about his own experience in rehab soon after his accident. As he told the story of having an intellectual realization about his body's new, strange reference point and consequent adjustment to moving through the world in a wheelchair instead of a walking person, and of trying to engage the attending physician in conversation about this idea, only to be tacitly dismissed by the doctor. I noticed a pitch in his voice that I hadn't heard before. It probably wasn't obvious to most of the people in audience I imagine, but I heard it immediately. It was that deep, quiet, shock of realizing you'd become something different than you were before, that you were becoming someone objectified and abstracted. In his voice I heard that horrible feeling of being made invisible, of having one's new life experience ignored and dismissed. mr. hockenberry was describing his new physical experience to a person who now only saw him as paraplegic (other) and not as an intellectually curious person too. I may be projecting or all wrong here, but that's what I thought I heard, quietly, underlying his story and voice. He went on to desribe this moment as the beginning of a profound isolation of experience, that in the absense of interest or curiosity on the part of the doctor he was trying to talk to, he entered what he thought was a very singular and particular journey alone.
And I immediately knew what he was talking about. Though in different circumstances and with a very different physical condition, I knew that feeling. I knew that loneliness and feeling of invisibility and dismissal too.
mr. hockenberry then went on to describe how he had met ms. mullins 30 years later and how their proceeding conversation about their personal experience with physical disability was a revelation to him. He described how he quickly realized that here was a person who understood what he was talking about to the disinterested doctor so many years before. Here was a person who was not only fascinated by the ideas of different physical vantage points and the dynamics of navigation, but one who had also developed language and philosophy around it. She fundamentally understood his intellectual curiosity around his physicality and also seemed to embody the fact that the intellectual and philosophical exploration of the experience was key to living life fully and whole. What followed was a remarkable hour of two interesting and accomplished people discussing their physicality, their exploration of it and their development of a philosophy and sense of opportunity around it. I sat in the audience and watched in amazement as these people talked about ideas I'd grappled with for so many years. It was so strange and wonderful to watch two other people consider, explore and even disagree about physicality, disability and the idea of differentness because of it, in public and with such vigor. It displayed a new normalcy, some of my normalcy as a person with a chronic illness, for all the world to see, publicly and without pity or shame. I felt so validated in my own intellectual instinct and curiosity around my own disease process and journey because of this. And beyond that validation, I was lucky enough to witness a real and robust exploration of ideas and viewpoints that I have rarely seen or participated in. Suddenly I realized how unique and unprecedented this was, that this public conversation had moved far beyond the usual idea of loss and struggle, the outside in view of disease and disability that normally defines the conversation, the one where grief and invisibility and struggle are the focus. Instead I was watching two smart, whole people having a knowledgeable and probing discussion from the vantage of inside out. They were demonstrating a new type of normal I'd never really experienced before. Not a less than normalcy but actually a more than view of normal, brought to bear because of this journey with the physical. Asset, not just disability. Opportunity, not just loss. And at the end of the day, what ultimately I take away from this event is that this journey of chronic illness is a profoundly human one, deep, exciting, personal, tragic and full of possibility all at the same time. The more that it's talked about, privately, publicly, intellectually, artistically, personally, the more that becomes clear. To me. To the world. The more it's talked about and explored the clearer the humanity of this journey becomes.
And that's a very, very good thing don't you think?
