I’ve been thinking about our conversation with Susan Grimaldi. Susan is unflaggingly hopeful about the state of the world, and consistently evokes the human capacity for caring and positive action. As a shaman and human being she also manages to hold on to a sense that the Creator and the Spirits have a larger plan, one we may not be able to see or understand.
Susan is courageous, as is evidenced by her work in Mongolia. I imagine she would say that rather than being courageous, she is simply following the dictates of Spirit. I understand that. So often folks view our work with a certain degree of awe, even though we are simply doing what must be done in the moment. We are just people. I frequently remind those who come to me seeking aid, that really living life, being fully engaged, demands courage, and I am deeply appreciate of the opportunity to witness their bravery as they face the challenges in their lives.
Thursday evening we were witness to another’s acts of Self and Spirit when we went to a fundraiser for Mark Utter. He’s a Burlington based man who has lived life with a severe communication disorder, yet remains optimistic, friendly, and often, joyous.
Mark faces discrimination and rejection on a daily basis. Just navigating the world is a challenge, for Mark can only communicate nonverbally, and through the use of cumbersome assistive technology. Yet Mark would, I imagine, reject the notion that he is courageous. Rather, he would assert his belief in the goodness of people and the wonder of life. He would insist we focus on his joy.
Mark wants everyone to understand the difference between having a communications disorder and being “a child” or “stupid”. He points always to his rich inner life, and his infectious love of the world. He asserts the distinction between a severely limited capacity to communicate one’s thoughts and experiences, and the belief of professionals and others that his mind is empty. He dances with words and body, and casts the light of his smile far into the darkness, a sure beacon home for those who stop long enough to get to know him.
Mark is working on a film about his life, entitled, I Am In Here. I had the opportunity a few months ago to read the script. Mark was about to visit my Arts and Social Change class, and the students and I read the script in preparation. It is a remarkable document, a tribute to the resilience of the human spirit. When Mark arrived in class, accompanied by his friend and communications aid, Emily Anderson (who is Director of the Awareness Theater), it took a while to set up the technology required for him to communicate with us. When he left, about 90 minutes later, the class was in awe of his tenacity, his sharp intelligence, and his humor. We were also keenly aware of the sheer effort required of him. In order to share his thoughts and life, Mark types one laborious letter at a time!
After many years, Mark has found a voice and the courage to use it constructively. I hope you will stop by his website and see the film’s trailer, then maybe donate a few bucks to his cause. I also hope you will come away feeling inspired, and reminded of your own tenacity and courage. Let us remember that no life is without challenge, and moments of fortitude and resilience.