Lost in the shadows of disability after contracting a virus that attacked her central nervous system in September 1994, Sue Austin of Devon, England, felt her identity slip away. She had been working as a long-term mental health specialist when the acute illness hit. “I was completely incapacitated,” she says, “hearing loss and a degree of loss to my eyesight. I had extreme muscle weakness and my balance was greatly affected. I could barely get around.”
Austin tried returning to work in early 1995, but was sent home because she was not well enough to be there. Disheartened, she watched helplessly as the illness stole her life and restricted her abilities. “I was going from extremely healthy and physically active, to finding myself in a completely different embodiment. I was frustrated, felt very constrained, was struggling to get out, go back to work, and on with my life, but my body was too frail.”
The downhill slide continued as she realized her condition was not something that could be cured. The disabling effects were chronic, and her mobility would never be the same as before. She had always thought she would get better, but now felt powerless and mourned her previously vibrant self and wondered what she could do. “It was during that time when someone came around to demonstrate a power chair,” she says.
She had tried a scooter but did not have the upper body strength to control the steering mechanism, so when she finally got to try a motorized chair in 1996, she felt a tremendous sense of freedom. “It was like having an enormous new toy. I could whiz around and feel the wind in my face again. Just being out on the street was exhilarating.” Right after the demonstration, Austin tracked down a secondhand power chair and started her resurgence into life.
Unfortunately, her liberated sense of self was not echoed by people’s reactions. They saw her as disabled and associated that image with words like limitation, fear, pity and restriction. She felt estranged from herself. “I was seeing myself, not from my perspective, but vividly and continuously from the perspective of other people’s responses to me.”
The power of those social distortions weighed on Austin. She began to feel alienated from society, rejected, and struggled to redefine herself. She had never seen herself as an artist but always appreciated the therapeutic aspects of art. She had used art as a way to find healing during the darkest hours of her illness. “I realized artistic activities could help me get back into life, so I began painting glassware for Christmas presents.” Soon she was getting commissioned to create specific pieces. “People described me as an artist and encouraged me to move forward. I did not feel like an artist because I did not have the training or coursework, but I felt something move through me when I worked artistically.”
She began taking art courses, and with each course she felt a rebirth of passion and purpose. Through the encouragement of others and aid from Britain’s Disabled Student Allowances, she was able to pursue a bachelor’s degree in fine art. As she developed her craft and honed her artistic vision, she began to fight back against the twisted portals of negative social perception that surround disability and wheelchair use by creating her own portals.
Her original “Portal” — a photograph of herself wearing a summer dress, hair streaming behind her, sitting in a red wheelchair at the bottom of a pool — won Judges Choice at the second Holton Lee International Disability Arts Open in 2008. This image has become Austin’s calling card representing her philosophy. “There is a joy, freedom and excitement when you can look at and value the world in a new perspective. My artistic practice makes use of surreal juxtapositions and quirky re-presentations of disability equipment to facilitate new ways of seeing, being and knowing.”
Her first exhibition, “Traces from a Wheelchair,” (Faith House, 2009), resulted from an 11-day residency at Holton Lee in Dorset County, England — an opportunity she was awarded for receiving Judges Choice for “Portal” in 2008. This collaborative experience and her studio-perfected, wheelchair-mark-making technique allowed Austin to interact and respond to the landscape, people and architecture in unique ways. She used huge pieces of paper and mother earth as her canvas. Exploring them with mud, clay, and white paint, she created glorious loops and interconnecting lines that marked the passage of her chair. The traces of her journey, she says, “turn what is usually perceived as purposeful, one directional marks into a creative, playful enterprise that requires one to rethink how we move in this world.” This experience helped Austin redefine her relationship with herself, others and the earth. More importantly, it led to her next portal of transformative thought in the more mutable medium of water.
A Watery ‘Canvas’
Austin had learned to scuba dive in 2005 but felt limited by her need for constant support in that element. “I love the feeling of neutral buoyancy,” she says, “but I was not strong enough to propel myself even with webbed gloves.” She always had to depend on someone else to move her through the water, but after experiencing the freedom the power chair gave her on land, having to depend on others felt restrictive. It was that juxtaposition of freedom in the water but still restricted mobility that lead Austin to transform herself into what some call “the mermaid with the pimped-out chair.”
Austin laughs at the description. “People thought it was impossible, but I had toyed with the idea since my first piece. I knew the underwater wheelchair would improve my autonomy in the water, but I never imagined the sense of grace I would feel. I am faster than other divers and I can do amazing loop-de-loops. Now I’m doing things I have never imagined and my life has been transformed in the most magical way.”
Andrea Frankham Hughes, a local artist in Portland, England, a picturesque coastal community in Dorset County known for its diving, also had her own life transformed by Austin. “I kept hearing these stories about this crazy lady in a wheelchair that wanted to fly underwater,” says Hughes, “so when my husband Rob was contacted by Sue to adapt a wheelchair that could go underwater, I was intrigued.”
Austin’s idea for a self-propelled underwater wheelchair had been dismissed by several engineers and divers as an impossible dream. But Austin was determined. In her December 2012 “Ted Talk,” she says, “I realized that scuba gear extends your range of activity in just the same way that a wheelchair does. But the associations attached to scuba gear are ones of excitement and adventure — completely different to people’s responses to the wheelchair. So I thought, ‘I wonder what will happen if I put the two together?’”
She had received a grant from the Arts Council England’s Impact program for her project, and she knew there had to be a way to make it happen. When she heard about Ron Hughes, an engineer, creative fabricator and designer known for his unconventional approach to the process, she came to him with her inspiration. Together they began “Testing the Water.”
It was during that time that Hughes became a proponent. “It was the summer of 2010 and I got roped in to help poolside with the project,” she says. “Diving in the pool with a wheelchair takes everyone pitching in.” Hughes was captivated by Austin’s passion and determination but reflectively admits, “As an adult, I had volunteered to help young adults with disabilities, but I had viewed them with a sense of pity. After seeing Sue in her underwater wheelchair, I was enlightened. I realized the full scope of possibility that existed for us all if we only changed the way we look at things.”
“Testing the Water” proved to be such a success that Austin applied for and received an unlimited commission from the Arts Council England’s Impact program to move forward with her soul-child — “Creating a Spectacle!” — which was set to be part of the Cultural Olympiad, an art extravaganza surrounding the 2012 London Olympic and Paralympic Games. Austin wanted to expand the range of her sub-aquatic carriage from the pool to the sea.
Hughes was so moved by the project that by February 2011 she put aside her jewelry-making business and, along with Trish Wheatley, became its co-manager. Not only had Wheatley met Austin during her 2009 Holton Lee residency, she is also the co-producer for Freewheeling, the organization behind “Creating the Spectacle!” as well as director of Disability Arts Online, with a blog that continues to follow the evolution of Austin and her underwater wheelchair.
Getting the first film of the on-going Spectacle project completed required months of intense physical training, out-of-the-box engineering and a tireless support team. “Finding The Freedom” follows the surreal imagery of Austin in her underwater chair as she explores the exotic beauty of the undersea world. “It is a lot more work than I ever imagined,” says Austin. “I am pushed in so many ways: physically, mentally, organizationally. It has become so much bigger than I imagined.”
Austin sees herself as only a part of her work. She contends that the Spectacle is an ongoing entity that unfolds with each new installment and with every viewing. “The work is alive. Every time a person views the underwater wheelchair, they become part of the conversation. People tend to think of the wheelchair as a negative object, but once they see the Spectacle, they shake free from their perceptions and see the chair as a positive, desirable object.”
Matthew Scott Drake, 40, from Abiquiu, N.M., recalls the first time he saw the footage of Austin “scuba-wheeling” in the ocean. “It is one of the most visually beautiful, as well as inspirational things I have ever seen. She proves that beauty can be found in almost any situation if we simply look,” he says. “When I came across Austin’s footage, I was going through chemo/radiation treatments, and seeing her stopping at nothing really gave me energy to just keep going. What she has done is truly epic. ‘Epic’ not just for people with physical challenges, but for everyone.”
Austin and the other team members have worked with several groups to refine the underwater chair. Plexiglas wings and Pegasus thrusters operated by gentle pressure from Austin’s leg allow the chair to glide through the water like a manta ray doing ballet. The amazing marine life and tropical setting of the Camel Dive Club and Hotel, located in Sharm El Sheikh, Egypt, is the perfect setting. The warm water allows Austin to dance freely among the sea creatures in everyday clothes, enhancing the sensation of reckless abandonment.
Matt Rusinek, 24, co-founder of www.ArtFromConcentrate.com, in Toronto, Canada, didn’t know how to process the images he was receiving at first. “A woman in an underwater wheelchair swimming around effortlessly? That is one concept that is foreign to the senses. The video was mesmerizing. The complete freedom portrayed brought me so much joy and put me in a child-like trance. I find myself continuously in awe of the human race.”
Austin’s second film, “Finding the Flame,” was even more ground-breaking in its conception, and far-reaching in its audience. In it Austin discovers the Paralympic torch in a cave while exploring the Red Sea in her underwater chair. This was integrated with a live performance on Aug. 29, 2012, for the Cultural Olympiad, which involved 23 scuba-equipped spectators, including several with disabilities, going underwater to watch Austin dive live into a swimming pool. People who saw the event had described it this way: “Utterly mind blowing. Mermaids, eat your hearts out. Beautiful! Wish I had been in the water! Amazing guts and determination to achieve the seemingly impossible.”
Austin does not view herself as inspirational, but she is amazed and delighted by the response the work has received. “Preconceptions rob people of their life. These negative associations we have with disability and disability equipment cause people to get depressed and accept these labels or become the negative,” she says. Austin understands the defining power of social stereotypes and wants to share her experience so that others can avoid becoming trapped by the caricatures of prejudice.
Erena Shimoda, an underwater portrait photographer from San Francisco, says, “When I saw the films, I definitely felt the powerful message of the possibility in life. I can almost see her flipping the finger at everyone as if to say, ‘I can do this!’ Even with discrimination experiences in the past, her positive attitude depicts beautifully in the open ocean.”
Says Austin, “I have had the privilege of going through this process, acquiring a disability and changing my perception. My arts training has given me a passion, an energy, and an awareness of how a personal narrative can transform social preconceptions. Hopefully, my journey can create portals for others to find their own passion.”
Austin continues her underwater adventures. Currently she is filming in the Red Sea with a 360-degree camera to create a piece that, when shown in a 360-degree theater, will completely immerse viewers in the experience. She has successfully created portals across the earth and into the sea to transform our thought.
What’s next? A ride through fire or a flying chair? With Sue Austin, if she can perceive it — she can be it!
• Camel Dive Club and Hotel, +20-69-3600700; firstname.lastname@example.org, www.cameldive.com
• Diveheart, 630/964-1983; email@example.com, www.diveheart.org
• Scuba Travel, +44-0-1483-411-590; www.scubatravel.com
• A-1 Scuba and Travel Aquatics Center, 303/789-2450; firstname.lastname@example.org, www.a1scuba.com
• Pegasus Thruster, 305/989-8433; email@example.com, pegasusthruster.com