John and another friend, Danny Woodburn, are two highly talented actors and comedians who I respect so much for their ambition, professionalism and integrity (among many other values). And, with so much hype last night and leading up to last night of the inclusion issues surrounding the Oscars, there was a population who needed to be part of that discussion and was omitted. It is the population to which John and Danny belong, actors who have disabilities. There are many of them. They want and deserve equal opportunities but few of them get the roles. How often it is that Hollywood casts actors without disabilities to play the role of those very capable actors who do have disabilities. Really, this discussion needs to happen around every workplace and within the community as well. When we talk about inclusion and diversity, we need to remember it is not simply a black or white issue. It is much broader.
February 4th 2016 passed and I completely forgot that 29 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, they had to amputate 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 took lessons continuously for 17 years. And 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 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 they are just sort of congratulating me for getting up that morning and remembering to put my 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 reinvigorated 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 Downs 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 I call 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 sole benefit of non-disabled people. The only purpose of these images is to motive you, to inspire you so that when you look at them you 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 you lessen your problems or put your 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 the most underrepresent 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 2015 GLADD’s report, “Where We Are On TV,” it stated less than 1% of characters on television were portrayed with disabilities. The actual number of PWD actors working the roles is even less, with most roles done by able body actors. Current statistics show there are over 58 million people or nearly 20% 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 less than 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.
Next year, I will have been using my prosthetics for as long as 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 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 those 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, “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, this falsehood 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 falsehood, 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 used to touch 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 “dad” role, the “banker” 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.
Have you heard about Fuel Cincinnati? It is is a nonprofit accelerator that identifies and backs innovative community projects in the greater Cincinnati region. Run by an all-volunteer committee of young professionals, for the past six years Fuel (formerly known as Ignite) has been part of Give Back Cincinnati, the region’s largest young professional volunteer organization.
Fuel supports community innovators in a number of ways, including by awarding micro grants of between $250 and $2,000 to nonprofit projects in four core areas: education, community building, diversity, and environment. Fuel Cincinnati has received generous grants from The Carol Ann and Ralph V. Haile US Bank Foundation and from The Mayerson Family Foundations.
Joe Stewart-Pirone, Fuel chair, sent me information about the ten projects they sparked in 2013. While diverse, what they have in common is their common good for our community. What a great effort!
“Our mission is to identify young professionals with great ideas for improving the community, and then help them take those ideas from the back of a napkin to implementation in a year or less,” Joe said.
Fuel Cincinnati 2013 Projects
Growing Value Nursery
Braden Trauth, design professional and permaculture expert, is a director of Cincinnati-based nonprofit This Land, Inc. He came to Fuel Cincinnati with a proposal to create a retail nursery where the organization could offer both edible plants and education on how to grow them sustainably in the local urban environment.
Fuel’s committee fell in love with the idea at first sight. “You talk with Braden for a half hour and you realize that we have these world-class experts on permaculture right here in Cincinnati,” Joe said. “Fuel knew we wanted to help launch this project as soon as we saw it. The focus on sustainability and on addressing the urban food desert problem was timely and exciting.”
Fuel invited This Land to present the idea at its annual Fuel the Fire event in June, where five organizers pitched their project ideas to over a hundred and fifty community members. Each person in the audience paid $20 for the opportunity to listen to the pitches and vote for their favorite, all while enjoying locally brewed beer at the Moerlein Tap Room and food from Cincinnati’s popular Eli’s BBQ.
This Land didn’t take home the $2,000 grant for the top vote-getter at Fuel the Fire, and it didn’t even win the $500 second-place grant. But the organization got to share its idea with dozens of people who had never heard of permaculture before that evening, and Trauth walked away from the event with a number of new connections who were interested in what This Land was doing.
But that wasn’t the end of the story. In August, Trauth met with Fuel Cincinnati to provide an update on the project, and Fuel awarded This Land a $1,200 grant. The Growing Value Nursery is now up and running in Northside.
Against the Grain Scholars
Michael Farrell conceived the idea that did win the most votes – and a $2,000 grant – at Fuel the Fire this year. The Xavier University alumnus and middle school teacher at St. Francis Seraph in Over-the-Rhine saw a gap in the local nonprofit landscape, and he started an organization called Against the Grain Scholars to fill it.
When Mike looked around at the programs serving inner city school students, it seemed to him that most resources aimed to help underachieving students. He felt not enough was being done to support students who were succeeding in that challenging environment.
So he identified three students at his own school whose positive attitude, hard work, and solid achievement set them apart from their peers. Then he lined up young professionals to serve as mentors. He secured donations of tablet computers. He helped the students organize community service projects. And he created opportunities for the students to interact with their mentors. These were the first “Against the Grain Scholars.”
As the first generation of Against the Grain Scholars prepared to move on to high school, Mike came to Fuel Cincinnati for help to keep the project going for a new group of students. Fuel liked the idea and the passion behind it, but in a competitive field of fourteen excellent proposals, Mike’s wasn’t initially one of the five invited to present at Fuel the Fire in June.
But apparently it was number six. Three days before the event, Mike got a call from Fuel.
“One of the other projects dropped out at the last minute,” recalled Joe. “We called Michael in the middle of the committee’s meeting to see if he was interested in the opportunity because we had to make a decision that night.”
Within 48 hours, Mike put together what turned out to be the winning presentation for the event. And after the votes were counted, he took home a $2,000 check to add two new student scholars to the program. “A teacher like Michael is a hero,” said Joe. “He’s a hero to those kids because he’s showing them how to change their lives, and he’s a hero to the community because he’s developing the next generation of young professionals who are going to help keep Cincinnati and our region moving forward.”
Grants and More
Fuel Cincinnati helped launch eight other great ideas in the greater Cincinnati region in 2013. The Walnut Hills Redevelopment Foundation (http://www.walnuthillsrf.org) received $500 to support its Five Points Alley Biergarten project, which transformed a blighted, unused space into a hub for community events in the neighborhood.
Local architects Elizabeth Schmidt and Brad Cooper won a $1,500 grant for their Place from Space design competition (http://placefromspace.wordpress.com), which generated over 30 proposals for innovative development of vacant spaces in five neighborhoods in Cincinnati and Northern Kentucky.
Krista Beyrer (http://www.cahs.uc.edu/faculty/facultyprofile.aspx?epersonID=beyrerka) at University of Cincinnati received $2,000 for an initiative to use iPads to help people with language impairments caused by strokes or brain injuries communicate with others.
And Fuel awarded a $975 matching grant to Keep Cincinnati Beautiful’s Future Blooms Program (http://keepcincinnatibeautiful.org/programs/future-blooms) to fund the boarding and historically accurate painting of the iconic Paramount Building at Peebles Corner in Walnut Hills.
With Give Back Cincinnati’s (http://www.givebackcincinnati.org) former Vice President of Programs, Javi Cuadrado, taking over as Chair in 2014, Fuel Cincinnati has big plans for next year, too. Among other things, Fuel plans to create more opportunities for Give Back Cincinnati’s young professional members to connect with community projects and organizations looking for volunteers and pro bono professional services providers.
DIY Network’s Desperate Landscapes is looking for a Greater Cincinnati yard in need of fixing up…one of the per-requisites? You must have a dog for this one. It’s a great opportunity for the lucky family chosen. I have information on my pet blog at this link: DIY Network’s Desperate Landscapes is looking for a Greater Cincinnati yard to transform into a dog friendly attraction. I have information on my blog. http://goo.gl/BmPsq