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Disability and Desire – journey of a filmmaker

In 1996, at the age of 24, I found myself in hospital, with empty walls and broken dreams colouring my days. My body told me long before doctors had the courage to admit it. I was paralysed from the chest down. During those endless afternoons with little else than my mind to entertain me, I contemplated the extent of my loss. Perhaps what struck me deepest at the time was that I would never be desired again. My body had become damaged goods, my sexuality erased. As time went by, I began to dismantle my perceptions by analysing the origins of it. I recognized that my mental picture of a person with a disability was that of someone in need of care, someone to be pitied, someone who certainly had no real claim to love or any kind of fulfilling life. The basis of my beliefs was largely informed by society’s consensus on people with disabilities…these were people who were mostly invisible, unless as beggars on the street or patients in hospital. The reflection of this invisibility was entrenched by the media.

My political consciousness grew within the disability rights movement. I began to acknowledge that it was society that had placed my body in a box with a label and stuck it away on a dusty shelf. I had a different body, yes. Not a damaged one. The process of reclaiming my body was an exceptionally powerful and liberating experience. I understood desire and sensuality from a completely different perspective. I felt pride. I even dared to feel beautiful. I cruised around on my wheels feeling that I had every right to be in the world, as much as anyone else did. And I began to live with a passion and fervor that changed the course of my life in a fundamental way.

After years in the disability rights movement, I returned to my dreams of becoming a filmmaker. I was fortunate enough to receive a scholarship to film school from the Ford Foundation. At 32 I became a fulltime student again. In my first writing class at Temple University in Philadelphia, my professor told us “ Write about something because you HAVE to write about it. Write from your soul” My first film birthed itself with this honesty. “Whole – A Trinity of Being” a visual doc-poem of three short films, explores my spiritual journey of embracing and celebrating my body. The first segment “Pin Pricks” tells the tale of how the fabric of my life had been torn apart and the revelations that took me beyond this loss. “ I chose not to wear that garment of bitterness so easily fitted to the wounded body”

The following segment deals with my second disability, namely that of the dependency on a tube that fits into a hole in my throat allowing me to breathe and speak. “I celebrate this hole. The breath and speech it gives, is my life force. So, I decorate it with jewellery, different handmade beads and trinkets because scars should also be crowned. Even if they’re not neat or pretty or hard to look at sometimes”

The last film of the trilogy is a culmination of images that gives snapshots of life in a wheelchair – not traditional snapshots but those that dare to claim a strong sense of sexuality and desire. One of the hardest scenes I did was a shot of my wheelchair next to me in the bath, cutting to a shot of my hands traveling over my body, in a gesture of masturbation. Doing this scene was not at all gratuitous. It was a political decision of painting a picture of a disabled woman who has an active sexual relationship with herself. In another scene, I depict my partner and I in a loving embrace. Difficult to do but the necessity far outweighed the difficulty. The film ends with a declaration of discovery “ I know about this dance of living. This dance is not with the feet. This dance is with the heart. And when I dance with the heart music comes through me. Music is me. And then all that I am, is the dance”

It has been two years since making that first film. To date, it has won four international film awards, much to my surprise!

My work has continued to focus on re-envisaging a media that makes people with disabilities visible, not only as sexual beings but as people in the fullness of human experience. I am juggling various stages of poet production on various films and hope to send them off into the world within the next few months. I am also working on the cinematic aesthetics of shooting films from a wheelchair. Unless we ( as people with disabilities) are able to be the maker of own images, our lives will constantly be depicted on the basis of the assumptions others hold of who we are, how we live, how we love.