Freedom, independence, and fun are 3 words rarely heard in conjunction with life with disability. While people with disabilities are no longer hidden away in shame by their families, nearly every time I am out in public I see someone’s face cloud over in pity. I can almost hear their thoughts “That poor man”, as if my life were somehow lessened. Less opportunity, less freedom, less fun, they think.
I have loved sailing ever since my early teen years when my father started teaching me to sail, infecting me with his enthusiasm for the sport. There is such beauty and harmony in sailing. The boats themselves are beautiful - who hasn’t looked wistfully at the sight of crisp white sails against blue water? The sailor has to work in harmony with the other crew to work the boat and work in harmony with the wind and sea. And there’s the majesty of the sea, beautiful, mysterious, ever changing, always inviting yet always with a hint of menace. The seas have no boundaries or limitations.
I went sailing last Monday. I, with all my disabilities, got hoisted into a sailboat and put into a special chair on a sailboat and went for a sail in Sheboygan, Wisconsin, the place where I learned to sail. With me were my caregiver, my son-in-law and, most importantly, my father, the man who gave me a love for sailing.
There are no words for what this day meant to me. Joyful, life-giving, food for the soul, strengthening. These words were certainly present, but they are wholly inadequate. Feeling the wind, hearing the water rush by the hull, and seeing the borderless, boundary-free horizon was an experience of the transcendent.
Of course this day didn’t just happen. At a book signing and Bible study I led in January a family friend and excellent sailor struck up a conversation about my eye gaze speech technology. He had read my book, which includes some sections about sailing, and we began wondering if that same technology might be used to control a sailboat.
Over the next several months I was introduced to members of the Sailing Education Association of Sheboygan (SEAS), one of only four accredited sailing education programs in the country. Part of SEAS’ mission is to provide sailing education and opportunity to the disabled and in 2014 they hosted the international match racing championship for the blind. They devised a system of auditory signals for the blind to navigate the course and determine where their competitor was so that, for the first time in this competition’s history, blind sailors could race without a sighted person on board.
Members of SEAS got together to devise a set of systems to allow me to sail independently and we have been busy with not only the transfer and seating systems we tested Monday but systems to control steering and sails. Our next step is to build and install a means to stabilize sailors’ heads and a combination of head and bite switches for steering and sail trim.
Although I am deeply grateful to the compassionate and supremely gifted people of SEAS for what they have done for me, this project is not about me. We are building and testing a proof-of-concept which we want to duplicate in a fleet of 12 boats. Stay tuned for more progress reports and ways you can help. Our goal is to provide people with an extremely wide range of disabilities the opportunity to learn to sail. Not just to sail, but an opportunity to crush boundaries, to erase limitations, to feel free and to have fun.