I work with images, words and people to cultivate media designed to change the minds of individuals as well as the world. As a passionate producer, writer, director, filmmaker, and activist, I create award-winning documentaries, educational initiatives, and books made to inspire positive social change. I refuse to be defined by the body I inhabit; as a deeply passionate and creative individual, I am so much more than a Black woman living with a life-altering physical disability. I am energy in motion and spirit first.
Back in 1971, I started falling down without tripping. I intuitively felt that something was seriously wrong, but everyone wrote it off, saying I was clumsy. After one particularly abrasive fall, it was discovered that my left hip had slipped out of place. I proceeded with a drastic surgery that led to the insertion of pins in my hip and landed me in a body cast. I lived trapped in that cast for two months, plastered from my breasts to my toes, legs spread, unable to move. My mind raced for hours and days on end, wondering for the future of my body. As a young teen on the cusp of adolescence, this experience was nothing short of traumatizing. After I was liberated from the cast I started walking more slowly, and people started treating me as physically fragile. Determined to prove them wrong, I took dance classes and played softball. I was a great pitcher, and my coach made an exception to help keep me in the game, allowing someone else to run for me during my turns at bat. My left leg never regained its strength. The orthopedic doctor said I needed more physical therapy, and the physical therapist said I was “lazy.” Amid the doctors’ criticisms and lack of tangible guidance, I eventually stopped going to therapy altogether. In 10th grade I began to experience a slight dropped foot. By the end of high school, I couldn’t walk the 12 blocks from school to downtown with my friends.
In 1981, after years of slowly losing my physical ability without explanation, I was diagnosed with Charcot-Marie-Tooth disease. At first, we were told it was a rare form of muscular dystrophy and then that it was genetic, except that no one else in my family had any symptoms. It took almost two years to receive a proper diagnosis. I have spent more of my life in doctors’ offices than I would like to admit. While Charcot-Marie-Tooth is now considered to be somewhat common, its progression within me has followed an uncommon trajectory. For some people, Charcot-Marie-Tooth doesn’t progress beyond weak limbs. What started with weakness in one of my feet has gradually taken away the use of my limbs and started threatening the functionality of my respiratory system. Over the years, I have completely lost the use of not only my legs, but also my hands. The disease has even atypically affected my respiratory system. Since 2002, I have been labelled a quadriplegic. I am not comfortable with that term, or how people perceive it… it is so limiting.
I am now in a wheelchair and sometimes on a breathing machine. I get fevers and respiratory illnesses rather frequently. My breathing is often labored, making it difficult to hold long conversations or spend long periods of time separate from my breathing machine which negatively impact my work as CEO of a nonprofit organization. I rely on friends and health aides to help me at every step of my waking life, from eating, to bathing to getting in and out of bed. My dependence on others is an incredible challenge, but the biggest downside of living with this disease is the way it impacts my ability to hang out with my friends, go to my family’s homes, and of course, my work as an artist. Can you imagine trying to write a screenplay without using your hands? Yes, technology is great, but it can never replace the sacred bond between the mind and hand in creative motion; of words and images flowing through your intellect and onto paper.
I have been working as an artist since I was a teenager. In spite of my physical challenges, I made it past the age of 50, even though I never thought I would make it to 40. My art and vision of positive social change have been my primary work and inspiration throughout my adult life. I have taken no detours to work in other fields.
It always makes me smile when my friends call me a force of nature. It’s odd to think of a force of nature, such as a hurricane, confined to a wheelchair with labored breathing – but here I am. The one thing I am very sure of is that my life experiences have brought me closer to having a personal relationship with God. When I was a child, I would ask my grandmother if she could talk to God on my behalf. My grandmother is no longer here, and I have had to talk and listen to God on my own. I could have never accomplished anything without a strong sense of faith and understanding that there is a power greater than I, and that goodness will reign. My body demands the attention of a team, and in this way my body resembles the work I undertake in an effort to make the world a better place. We are all connected.