I have danced around this saying since I started this work several years ago. I have decided to post something about this since I have been questioned on social media and cautioned to make sure what we are doing with the #SuperheroLikeMe project is not inspiration porn. I have to start by saying that as a caucasian male there are certain things in life that I will never experience. I can empathize and try to understand, but I will never know what it is to be a person of color applying for their first job. There are things that my daughter Devon experiences every day as a woman and a person with Down Syndrome that I will never experience. So that is my disclaimer, I write this as a white dude so that other people who are outside the looking glass might be able to see a little clearer. My sincere hope is that I can put this in perspective to those who don’t really understand. So this is not a post really intended for people living it, more for those who don’t understand why people living it might be upset by someone congratulating a person in a wheelchair for being awesome getting into their car.
The person we talk about most when thinking about inspiration porn is Stella Young. She was an amazing young woman born with osteogenesis imperfecta, who was in a wheelchair and really coined the phrase ‘inspiration porn’. Unfortunately she left us in 2014, but she left us much to think about, specifically, her Ted Talks: https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much
I have tried so desperately to understand inspiration porn, that I sometimes feel I go the other way. I know when Devon was young and I saw those stories about the kid with the disability running in the touchdown on the last play of the game when there team is up 5 touchdowns and the other team stops playing so he can run it in. I shared and cried till I realized the purpose was for everyone else to feel good. Not that the kiddo didn’t have fun, but that wasn’t the point. If someone congratulated me for being able to get into my car without help, I would wonder, “Is this some kind of sick joke?”
Celebrating someone for their mere presence is insinuating that there worth is dependent on you. Allowing someone to achieve, or fail, irrespective of what you think, is treating them as an equal. I always think about definitions when I try to explain this. Tolerance is permitting someone to be in your presence with no acknowledgment of their existence. Acceptance is acknowledging someone’s existence, but not expecting anything of them. Inclusion is expecting that person you have accepted to want to do things and treating them as such.
Respect is not the same as pretending to be inspired by someone’s existence. I have tremendous respect for my daughter’s ability to work incredibly hard for things some people find easy. I am inspired by her passion, her ability to try harder than anyone I know to achieve her goals. She is an adult woman, with opinions and challenges that I will never understand, but will always respect. Don’t applaud people for existing, respect people for living their lives. Expect people to have hopes and desires just as you do. Allow people to succeed or fail regardless of what you think they are capable of.
I want to now include a quote from Stella’s talk;
“I really want to live in a world where disability is not the exception, but the norm. I want to live in a world where a 15-year-old girl sitting in her bedroom watching “Buffy the Vampire Slayer” isn’t referred to as achieving anything because she’s doing it sitting down. I want to live in a world where we don’t have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning. I want to live in a world where we value genuine achievement for disabled people, and I want to live in a world where a kid in year 11 in a Melbourne high school is not one bit surprised that his new teacher is a wheelchair user.”
To see the world as we should, sometimes we have to accept our own biases. If we don’t accept that we cannot possibly understand everything everyone is going through, we will never listen to them. If we don’t listen, we don’t learn, and for someone to not learn something every day of their life is tragic. Inclusion allows us more opportunities to learn understand and grow. Inspiration porn is discrimination that is sugar coated in a way that makes us feel good. They are hollow calories that should not be consumed.
Embrace your own flaws and learn from those around you. You can’t learn if you don’t listen. If there is one take away from this blog post it is Stella’s last words from her Ted Talk.
“Disability doesn’t make you exceptional, but questioning what you think you know about it does.”