I’ve been a long time lurker, so now a first time poster. I originally posted this on my FB page but after reading Richard’s post about he and John Debney’s recently diverted trip, it made me think some here might enjoy reading about my diverted 30-year journey from my original destination…
Thirty Years a Hooker
You’d think that turning 60 the first day of 2017 would be a hallmark in one’s lifetime, but February 4th or my “ampu-versary” as some amputees call it, has been more of a touchstone marker for me. I prefer to coin the date with the phrase, the worst day of my life.
Thirty years ago, as a mostly out-of-work professional singer and actor, I spent a lot of time auditioning for roles in theater, television and film. Luckily, I had finally signed a couple of contracts that would provide a steady paycheck using my “music major” college education. I was excited about landing the lead role with a major opera company for their spring production, but more excited about a one-year contract working in a singing group at Disney World. I didn’t mind my role in this “real job,” temporarily working with a company that painted above ground water storage tanks. When I went to work on February 4, 1987, I had been working for this company less than one year as a fill-in job until my singing contracts started.
As I got to the jobsite, the water tower loomed with its four legs supporting the large tank on top and looked much like the iconic Warner Brothers lot tank. This tank, built in the 1930s reminded me of a guard tower at a prison, but kept a watery vigil for the fire suppression system of the textile mill. I grew up in this small North Carolina cotton town, which for many years was kept alive by these textile mills spread around the city limits. I never fathomed that a thread of my life would be woven at one of the factories with this old steel tower.
On this day on the side of that water tower, I started work holding an aluminum extension paint pole, but stopped for a few minutes to think about how I’d soon be holding music to work my chosen profession singing a lead in an opera and a spring time move south to work as a singer at Disney.
I re-gripped the extension pole so that approximately one foot was extended behind my underarm with my left forearm and hand wrapped under the pole to act as a fulcrum. My right hand was gripping the pole about eighteen inches in front of my left. Holding the 17-foot long extension pole in this fashion, I had good control and easily painted the water tower’s support bars. As I started to stand and lift the pole, it happened. A high-voltage line carrying over 7600 volts of electricity to the machines in the mill arced to the back of the pole in my hands.
Instantaneously in my hands, arms and body I felt heat and vibration. My ears were filled with a deafening hum and my vision was blurred. Every muscle in my body flexed and was hard as stone. Although it seemed like minutes, it all was over in just a few seconds as the deadly drone in my ears stopped and my vision cleared. The muscles that were rigid were now limp and I had no control of them. My mouth was completely dry and felt as if I had swallowed sand. As my mind started to clear, I could feel my co-worker removing my body from the safety harness and laying me down on the pick board scaffold. I could see my shirt was on fire but could not move my arms. I had to watch as my co-work snuffed it out with his gloved hand. In the distance I could hear the wail of a siren and I figured it was coming for me. As I lay on the scaffolding unable to move, my mind raced away wondering about my role in the opera and my move to Florida.
I spent the next five months of my life at the North Carolina Jaycee Burn Center in Chapel Hill North Carolina. Needless to say I did not sing in the opera or move to Florida. My left hand and most of my arm below my elbow was amputated that night. My right hand was amputated above the wrist approximately one month later. As the drugs wore off and the debridement and surgeries stopped, I assumed a new role I never wanted to audition as an upper extremity double amputee – a man with no hands.
I started playing piano at age three, started lessons at four and took lessons continuously for 17 years. Now after spending over half my life studying piano, at age 30, I would never play again. That day started me on a road that I never intended to take that has been filled with the perils and rewards of living with a disability.
I need to say I am not here to inspire you. I have lost count of strangers that approach me in public while grocery shopping or pumping gas to tell me that I am an inspiration. I guess they mean well, but to me they are just congratulating me for remembering to put on my pants before I left the house. There is nothing inspirational about pumping gas or grabbing a can of green beans off the shelf. You have been lied to about life with a disability.
Most people believe that because you have a disability that your life is worse; that being a person with a disability is a bad thing and that if you live with the disability, it makes you exceptional. Living with a disability is not a bad thing and it certainly doesn’t make you exceptional or inspirational.
Life as a person with disabilities can be difficult and we do have to overcome some things. But it’s not the things that you may think. It’s not the things to do with our bodies that we have to overcome. I believe that disability is caused by the way society is structured, rather than by a person’s impairment or difference. If society looks at ways of removing barriers that restrict life choices for people with disabilities, then disabled people can be independent and equal in society, with choice and control over their own lives. Of course I’m in a profession where the industry creates barriers that 95% of the work for characters with a disability are given to an able body actor. It’s these societal barriers of the industry that restrict the choices and control of my career.
So February 4, 2017 I will start using prosthetics for longer than I had my hands. Half of my life wearing hooks. Do they replace my hands? No, but they are a tool I’m forced to use for maintaining my independence in a society designed for able body people; a tool for me to pump gas or load my grocery cart. I’ve learned to use my prosthetics to best of my ability, so I know when people tell me “I’m an inspiration,” that they mean it as a compliment. I do understand that, but the reason it happens is because of this lie that’s been sold to the public that disability makes you exceptional and makes you inspirational. I’m sorry; but honestly, it doesn’t. I really believe that this propaganda that we’ve been sold is the greatest injustice and makes life hard for us.
Oh, and that quote about “the only disability in life is a bad attitude,” is total bullshit. It’s just not true. No amount of me smiling at a piano keyboard with a positive attitude will allow me to play as I used to touch the ivories with ten fingers.
I hope in my lifetime to live in a society where someone with a disability is not the exception, but just accepted as a norm. I hope to live in a society where a man stuffing a grocery cart is not an inspiration just because he is using prosthetics. I want to live in a society where we don’t have such low expectations of people with disabilities that we hire able body people to do jobs they are capable of performing. I hope in my lifetime to live in a society where we place value on genuine achievement by people with disabilities.
