An Epidemic of Invisibility

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By John Lawson (Special Contributor Commentary for Ringside Report)

February 4th, 2019 passed, and I completely forgot that 32 years ago, in 1987, I was in the North Carolina Jay Cee Burn Center and the surgeons were amputating my left hand. About one month later, amputated my right hand as a result of injuries I sustained in an electrical accident. I was working a “real job” as my dad use to say in between acting and singing jobs.

I had started playing piano at age three, started lessons at four and studied piano continuously for 17 years throughout college as a Music and Drama major. And now after spending over half my life playing classical piano, at age 30, I would never play again. That day 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 with a disability.

First, I have to say, I am not here to inspire you. I have lost count of the number of strangers that approach me in public while 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 getting up that morning and remembering to put on pants before I left the house.

There is nothing inspirational about pumping gas or grabbing a can of green beans off the shelf. I am here to tell you that you have been lied to about disability. Most 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, it makes you exceptional. Living with a disability is not a bad thing and it certainly doesn’t make you exceptional or inspirational.

Unfortunately, with the rise of Facebook, Instagram and Twitter, this falsehood endures and is perpetuated by pictures of a child running on carbon fiber blades with the words “Your excuse is invalid,” or a person using a wheelchair and the words, “Before you quit, try.” Or a person with Down Syndrome smiling and the words, “The only disability in life is a bad attitude.” There are many more and I know you’ve seen them. It’s what has been labeled inspirational porn. You may snicker, but I use the word “porn” purposefully, because these images belittle and objectify one group of people for the sole benefit of another group of people. In the examples above, we are trivializing and objectifying disabled people for the sole benefit of non-disabled people. The only purpose of these images is to motivate and inspire able body people so that when they look at the meme they can think, “no matter how bad my life is right now, it could be worse. I could be that disabled person with no legs, or I could be that person in a wheelchair.” It’s all there to make able body people lessen their problems or put their worries in perspective.

Life as a person with disabilities can be somewhat 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. Now, I have used the terms “people with disabilities” and “disabled people” decisively because 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 disabled people. 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 also apply to the entertainment industry as well. With the recent swell of diversity dialogue spurred by the Oscars “So White” campaign, the most underrepresented group, Performers with Disabilities (PWDs), has not even been mentioned in the conversations. The USC Comprehensive Annenberg Report on Diversity in Entertainment was released which frames its findings of significant gender and racial gaps as an “inclusion crisis” and an “epidemic of invisibility,” and completely failed to measure the appearance and inclusion of PWDs. This report represents “comprehensive?” “Inclusive?”

In the 2019 GLADD’s report, Where We Are On TV, it stated, “The amount of regular primetime broadcast characters counted who have a disability has increased to 3.1 percent, which is a record-high percentage but that number still vastly under represents the actualities of Americans with disabilities.” Current statistics show there are over 60 million people or nearly 25% of the population in the US with some form of disability while a recent study conducted by Neilson established that people with a disability represent $1 Trillion dollars in discretionary income spending, yet their depiction in television is only 3.1%. PWDs cross all races, ethnicities, genders, age and sexual orientation. It’s not an exclusive club, but something you could join in the blink-of-an-eye.

I have been using my prosthetics for longer than I had my hands. Over 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 my gas or load my grocery cart. I’ve learned to use my prosthetics to best of my ability, just as many of you have by using your hands or your body. So, this takes me back to those kids in the pictures we see littered around on all our social media. They are not doing anything out of the ordinary or exceptional. They are just using their bodies to the best of their ability. Is it fair that we objectify the kids in those images and trivialize them using their bodies to the best of their abilities by sharing those memes?

I know when people tell me, “you’re 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 invention of disability inspiration, that this propaganda that we’ve been sold is the greatest injustice. It 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 once did touching the ivories with ten fingers.

I want to live in a society where someone with a disability is not the exception but accepted as a norm. I want 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 congratulate them for getting out of bed and remembering to put on pants. I want to live in a society where we place value on genuine achievement by disabled people.

And remember the social model of disability? When barriers are removed, disabled people can be independent and equal in society, with choice and control over their own lives. I want to live in a society where I can be the PWD actor that is hired for the grand dad role, the lawyer role, the “hero” role and he just happens to be missing arms and that’s the norm. I want to work in an entertainment industry where disability is not the real “inclusion crisis” and the true “epidemic of invisibility.

*John is an award-winning writer, director, and PWD actor with past roles in over 40 films and TV shows. He is the first double-hand amputee trained and certified as a private pilot and the only double-hand amputee PADI scuba instructor in the world.
He is the CEO of Star Hooks Productions and serves on the SAG-AFTRA National Performers with Disabilities (PWD) Committee.

John has been an advocate for over 30 years for performers with disabilities speaking on entertainment industry panels across the US on authentic and accurate representation of disability in film and television.