Unstoppable: “Disability is caused by the way society is structured, rather than by a person’s impairment or difference” with actor, filmmaker and double hand amputee, John Lawson
Disability is caused by the way society is structured, rather than by a person’s impairment or difference. If society removes barriers that restrict life choices for disabled people, then disabled people can be independent and equal in society, with choice and control over their own lives.
I had the pleasure of interviewing John Lawson, a producer, director and actor who has appeared in over 42 films and television shows since becoming a double hand amputee. He is also the CEO of Star Hooks Productions, a film and television production company. John is a sought after motivational speaker and disability rights activist often asked to speak and consult at major movie studios and television networks about authenticity in casting of performers with disabilities.
Thank you so much for doing this with us! What is your “backstory”?
I was born in the small town of Roanoke Rapids, North Carolina known for multiple J. P. Stevens cotton mills and a large craft paper mill. I was the middle child of four, which probably explains a lot. My father worked in the lab at the paper mill and my mother, a violinist, was a stay-at-home mom. I started playing piano at age 3, started lessons at 4 and studied classical piano continuously for 17 years through college. I played tuba in the band and was the first person to be allowed to play football during the season and band during concert season. I played piano for my mom and football for my dad. When in high school, I helped re-start the high school drama club and appeared in many stage productions. I attended Milligan College in Johnson City Tennessee where I was a music major in voice and drama.
Can you share the story of how you became disabled, and what you did to not let it stop you?
In 1987 while working a “real job” as my dad used to say, in between acting and singing jobs, I was injured in an electrical accident painting an above ground water storage tank in an industrial site. A high voltage electric line with over 7000 volts arced over to an aluminum extension pole I was using and that resulted in burns to over 30% of my body and amputation of both hands. Although not expected to survive, after four months in the North Carolina Jay-Cee Burn Center in Chapel Hill, at age 30 having studied piano over half my life, I left the hospital with hooks in the place of my hands. I owe a huge debit of gratitude to the doctors and nurses that saved my life at the burn center.
It was there in the hospital that I decided there had to be more to life than just breathing. I thought there had to be a niche for an actor with no hands. Little did I know then the life path that desire would eventually send me. That day in 1987 started me on a road that I never intended to take and down a path that has been filled with the perils and rewards of living life with a disability.
Can you tell us about the accomplishments you have been able to make despite your disability/illness?
Since leaving the hospital, I have become the first double hand amputee to be trained and certified as a private pilot in the US and the only double hand amputee to be a certified PADI SCUBA Instructor in the world. Now, I say that not to inspire you. Many people believe that because you have a disability that your life is worse; that being a disabled person is a bad thing and that if you live with the disability, if you accomplish anything with a disability, it makes you exceptional. Living with a disability is not a bad thing and it certainly doesn’t make you exceptional or inspirational. I’m just living my life; trying to live it to the fullest and make a contribution to the world.
For nearly 30 years I have worked as an advocate for people with disabilities speaking on panels at major studios and networks about the accurate and authentic portrayal of charters with disabilities in the media that we invite onto our screens every day.
I believe in what’s called the “social model of disability.” It states that disability is caused by the way society is structured, rather than by a person’s impairment or difference. It looks at ways of removing barriers that restrict life choices for people with disabilities. When barriers are removed, disabled people can be independent and equal in society, with choice and control over their own lives.
This model not only applies to society, but should apply to the entertainment industry as well. With the recent swell of diversity dialogue spurred by the Oscars So White campaign, diversity in Hollywood is at peak volume, but the most underrepresented group, Performers With Disabilities (PWDs), has not even been mentioned in the conversations
What advice would you give to other people who have disabilities/limitations?
I wake every morning and chose to face the day being positive and happy. Ok, maybe after a few cups of coffee, but life is about choices. The choices we make in our lives, steer us to our desired destination. There are many platitudes that are often thrown at disabled people, but one of my favorites often offered to me was said by Mark Twain, “It’s not the size of the dog in the fight, it’s the size of the fight in the dog.”
Life as a person with disabilities can be somewhat difficult and we do have to overcome some things. But it’s not always the things that you may think. It’s not always the things to do with our bodies that we have to overcome, but some times it’s the disabilities we create in our mind. An entire ocean of water cannot sink a ship unless it gets inside the ship. Similarly, the negativity of the world can’t pull you down unless you allow it to get inside you. The “size of the fight” within us, is a mantra suitable for everyone whether disabled or not.
None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are?
As cliché as it may sound, my mother. Although certainly not a follower of the teachings of Buddha, she always taught me that the secret to a prosperous mind and body was to not worry about the problems of the past nor anticipate troubles in the future, but to live completely and fully in my current moment of time. Of course, at the time, she had no idea how those principles would help guide me as a double hand amputee. As a small child, she always read to me and one of my favorite books was “The Little Engine That Could.” Only the little blue engine was willing to continue to try and he kept repeating the mantra “I think I can, I think I can.” The words “I think I can,” have helped me overcome many a seemingly impossible task.
How have you used your success to bring goodness to the world?
I’ve been fortunate since losing my hands to appear in over 42 films and televisions shows accurately portraying a double hand amputee. A recent study found that less than 2% of characters in film and television have a disability and of that small percentage, 95% of the characters with disability are portrayed by able body actors. I fully understand that it’s called “acting” and an actor can “act” disabled, but when we allow what has been coined “crip-face” in our media, we are denying the largest under represented group, and in this case over 20% of the population, the right to self representation. Can you imagine if 95% of all female roles were performed by men “acting” like a woman? Sounds absurd, right? But yet, these are the numbers. An actor with disabilities brings real-life experience of accuracy and authenticity to a role. Hopefully in speaking and educating some of Hollywood’s “gate-keepers” I have a made some small impact for representation of disabled people in media.
After a nationwide search, I am proud to have been recently cast in a feature film called DARUMA. To my knowledge this is the first film where both leads have a disability. It’s an excellently crafted, award-winning script by screenwriter Kelli McNeil. It tells a story that is different from the usual Hollywood clichés of being an inspiration with a disability or a story-line of pity for the disabled character. The producers set out to only cast actors with the actual physical representations of the characters in the script: a paraplegic and a double hand amputee.
Although the production was shopped around Hollywood, no one was interested with real disabled actors in the lead roles. Not discouraged and wanting the story told, the producers have set out to crowd fund the production. The fundraising campaign kicks off October 1st and will be conducting outreach to various veterans organizations, disability and spinal cord injury related advocacy organizations and other nonprofits to arrange for advance screenings and cast and crew Q&A’s once the film completes production, currently slated for the summer of 2020. You’ll laugh, you’ll cry and I can’t say any more about the story line, but this is one film you do not want to miss.
Can you share “5 things I wish people understood/knew about people with physical limitations” and why.
I’m not here to be an inspiration nor do I need your pity. Being an amputee is a part of who I am, but not the sum total of what I am. Giving the chance to talk, I may have accomplished more with no hands than you with hands. That’s not inspirational; maybe you need to try harder.
Telling me “the only disability in life is a bad attitude” will never allow me to play the piano as I once did with ten fingers just because I smile at the keyboard.
One of the first things I learned in “being an amputee 101 class,” was to ask for help when I needed it. Just because you see someone with a disability that in your opinion needs help, you are probably wrong.
In over 30 years of being an amputee I’ve learned that children have a true curiosity while adults a morbid curiosity. Children ask, “What’s that on your arms?” and I take all the time necessary to explain. Adults always want to now, “How did you lose your arms?” Why should you be able to make me relive the worst day of my life to satisfy your morbid curiosity?
Disability is caused by the way society is structured, rather than by a person’s impairment or difference. If society removes barriers that restrict life choices for disabled people, then disabled people can be independent and equal in society, with choice and control over their own lives.
Can you please give us your favorite “Life Lesson Quote”?
Someone once said, “Rise above the storm and you will find the sunshine.” In an airplane you can take off on a dark and cloudy day, but when you punch through the clouds, the sun is shinning on the other side. The same is true for life. Where we are in our life may look dark and dreary with criticism from others and self-doubt from the challenges we face in front of us, but if we keep going, the sunshine is just on the other side.
Some of the biggest names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why? He or she might just see this :-)
I attended the private 100th birthday party for Gloria Stuart, a 1930s Hollywood leading lady who played “Old Rose” in the hit film TITANIC. Her birthday party was given by TITANIC director James Cameron. He was of course constantly surrounded with people wanting to talk with him while I tried earnestly to control my total fan-boy enthusiasm and not elbow my way into the crowd. Later in the afternoon, while I was heaping more food on my plate, a voice from behind me said, “my mom has a disability.” I’m thinking, oh great I have to be nice and re-live my whole story. As I turned to face my inquisition, I was face-to-face with James Cameron. He spent 10–15 minutes just talking with me while ignoring others trying to garner his attention. We spoke briefly about disability inclusion in Hollywood and he asked for my contact info. As I set my second plate heaped full of food on the table and fumbled trying to pull a card from my wallet, he was cornered by some other admirers, whisked away and I never got a chance to give him my contact info. I would certainly like to have lunch. I’m still hungry.
How can our readers reach out to you?
http://www.imdb.com/name/nm2381613/
@JWLawson57
Thank you for all of these great insights!
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About the author:
Chaya Weiner is the Director of branding and photography at Authority Magazine’s Thought Leader Incubator. TLI is a thought leadership program that helps leaders establish a brand as a trusted authority in their field. Please click HERE to learn more about Thought Leader Incubator.
