I recently watched a video by filmmaker and self-styled inspirational speaker Joey Papa offering “advice” on how to connect with someone with a disability or whose loved one has a disability. It was among the most offensive, ableist videos about disability I’ve ever seen, even though — or perhaps because — it was apparently made with good intentions.
Video by Joey Papa. Transcript available here.
Papa suggests that to understand what having a disability feels like, people should think of the “most shameful, embarrassing thing about who you are” and imagine it showing on a video screen in a public place with hundreds of people watching. This, he says, is how people with disabilities and parents of children with disabilities feel. He goes on to claim, “One of the most shameful, embarrassing things about who they are is a part of their physical body. Think about that. They are wearing that on them. That is a part of their physical makeup.” And he says viewers should respond to people with disabilities as they’d want to be treated if their shameful secrets were on display.
No. Just no.
Disability is not shameful. Why should I feel ashamed of my body just because it works differently? Disability is a natural part of the human experience. We will all have disabilities if we live long enough. Disability can happen to anyone at any time, and it’s not a reason to stop living. We do not have “special needs” either — we have the same needs as all human beings. We just live in a society that doesn’t equally value different bodies and ways of moving, sensing, and thinking. Instead of including us and embracing our diverse perspectives, society labels our needs as “special” and therefore inconvenient. When you’re inconveniencing someone, how do you tend to feel? Embarrassed. Ashamed.
When I was diagnosed with cerebral palsy as an infant, doctors told my parents I would never walk, speak, or live independently. They said my parents should just put me in an institution and “move on with their lives.” Thankfully my parents didn’t believe that. They knew having a daughter with a disability wasn’t shameful. I wasn’t a secret to be locked away and forgotten. I was a human being with potential.
My parents devoted their lives to helping me succeed and raised me to be a strong woman who believes in myself. Today I have a Master’s degree and a job I enjoy at The Mighty. I live in my own home and travel around the United States sharing my experiences on my blog. I give presentations to companies, schools, and organizations about the importance of including people with disabilities. My disability is not something I’m ashamed to put up on a video screen — I’ve appeared on the news several times, and I make YouTube videos about my travels, my wheelchair splashed across the screen in all its maroon and silver glory.
My disability has not kept me from living a fulfilling life. But do you know what has gotten in the way? People who think disability is shameful. People who are afraid to get to know me or date me because they have bought into society’s beauty standards and think disabled bodies are unattractive. Employers who look at me, make assumptions about my abilities, and don’t hire me. Store owners who don’t bother to make businesses wheelchair accessible because they see accommodating people like me as a waste of money. A system that doesn’t give people with disabilities equal access to health care and home care services, but then shames us for needing government assistance.
At times, all these things have come together to make me feel sadness and shame about something I should never have to feel ashamed about — being myself. It has taken me years to overcome these feelings, and I still struggle sometimes. But I know I should not be ashamed. I am a human being, and I have value. I’m not a religious person, but I do believe I was put on this Earth for a reason. I don’t know if it comes from God or within myself or both, but I have a purpose and it’s to help people see the opposite of what people like Joey Papa seem to think disability represents.
Nothing about me or any other person with a disability is a mistake. Our bodies are not shameful. We are human beings with personality quirks and flaws like everyone else, but our disabilities don’t make us lesser. We all have something of value to give to the world, if the world recognizes our value and gives us a chance.
Joey Papa, please take down your hurtful video and use your voice to fight stigma about disabilities, not add to it. Get to know real people with disabilities and share our experiences with your social media followers who may have heard your damaging words. Most of us do not want to be objects of inspiration or pity, but we do want to be recognized for our humanity and treated with respect. Let’s help parents and newly disabled people see there is hope and strength to be found on the disability journey, not shame.
My name is Karin, and I’m #DisabledAndUnashamed — how about you?