Sometimes a great project just falls in my lap. I have been hired by Barbara Guyton to make a documentary about her sister, Mary Banes. This week we fly to New Orleans together to meet the subject and do preliminary research. I’m excited. This could be the most important film project of my career. Here’s why:
Mary Banes turned 65 last weekend. This alone is an achievement, for her and for the people who love and care for her. Mary has cerebral palsy and is unable to move at all. She requires constant care. The only reason she is still alive is that her father loved her and cared for her, and after he died her sister took on the role of caregiver. Note that I said “took on the role”, not took on the burden. Because that’s the point of this documentary. The public at large sees caring for somebody like Mary as a burden, but those who care for Mary and others like her see it as a privilege, something that gives meaning to their life. The disabled are not a burden. They are part of the fabric of our society, and they contribute in their own way.
Mary’s story is only part of this documentary. She graduated as valedictorian of a very special school, originally called, in less politically correct days, the Crippled Children’s School, now named to honour Anne Carlsen, a woman who was born with no arms and no legs yet earned a PHD and became the school’s first principal.
Mary went on to earn a university degree. She writes poetry. She contributes.
So this documentary will be about Mary Banes, her caregivers, and the school she attended. It will also be about other disabled people, such as my nephew, Ean Price. Ean has a progressive nerve degeneration disease that has left him in a wheelchair. He can no longer feed himself or swallow, and must be fed through a feeding tube. But, like Stephen Hawking, the disease has not touched his brain. He is an amazing young man with a very positive outlook on life. He designed and markets an automated device that is attached to his wheelchair and, with the touch of a button, swings a tube around to his mouth so that he can aspirate himself without relying on his care givers. He recently took first place in a disabled sailing race. He is the poster boy for medical marijuana, and was flown to Amsterdam to judge the cannabis cup. He’s an independent businessman who took his care attendants to Trinidad for a holiday, and to Europe for a rock concert.
This is a huge project with a noble mission statement: to reframe the disabled in the eyes of the general public. They are not a burden. They are part of the fabric of society and they contribute.
I expect this project to be all consuming for a couple of years, but it sure is great to feel like I’m working on something important, something that could make a difference to people.