I’ve had a few days to sit on this post- I began as I often do, typing in anger and typing with passion. A sort of “fury post” which tends to lack a necessary comprehension. I try to never hit that blue “publish” button in the upper right corner of my screen until I have taken a break from the post, because what I want is for the words to be read, understood, shared.
Well, honey, that is never going to happen when the words can’t even form a proper sentence.
Don’t get me wrong- the passion is always there. For anyone who has spoken with me in person about a topic that I have passion for, you know this. You’ve seen me go on a tangent before. It needed to be a calmer passion, though (if that’s even a thing).
Learning to step back and view the topic from above, below, and from all sides has been a more recent journey of mine. I’ve felt incredibly rewarded- when I remember to do it. My default setting has always been that of the “knee jerk” reactionary, so when I can learn more about something I am far better able to share with others.
Over the course of the past week or so, a great many stories have gone viral on social media. This is not a new phenomenon, of course, but one story jumped up and grabbed my attention. It is the story of a man on a flight, by the name of Tim Cook. Mr. Cook is deaf and blind, and he was on this flight alone (gasp! you mean people with disabilities can travel alone?) (that was sarcasm). The flight attendant asked if anyone on the flight might be able to assist in communications, and a young girl stepped forward. There was great emphasis in this story about how she learned to sign when she was struggling the most with dyslexia. She signed into his hand so he could feel the signs, and this was how they communicated.
Lovely, yes? Everyone was so taken by this story that was posted online, accompanied by a photo of Mr. Cook and the girl, busily signing. Even I was taken in at first by the beauty of human connections. It was after seeing this post on Facebook that I remembered my passion.
Except… did anyone ask him whether his photo could be posted on Facebook?
Did anyone interview him, once the news sites grabbed a hold of this amazing tale of 15 year old heroics?
And therein lies the problem. You see, for as long as our planet has been diverse (a population of people with and without disabilities), our planet has had non-disabled people jumping in front of those with disabilities in order to speak for them – without their consent.
We have a problem with pornography in this country, but not the kind you think. It’s called “inspiration porn”, and it’s something that I feel quite passionate about. It’s pervasive, and if you don’t know what you’re looking for you might think that a story is sweet and nice and wonderful. I’d like for you to take a moment and think about the deeper meaning behind preventing a member of a marginalized group from having a voice. And then I’d like you to read the story again and look for the interview with the person who is most impacted by the events. Look for permission to use photos. Look for any sign that anyone at any time asked the person about whom the story is written whether they would even LIKE to have a story written about them. Without those signs, there’s no proof that there’s any consent.
On the day that I began writing, I was scrolling through my Facebook newsfeed and noticed that the Northeast ADA Center had also shared the story of Mr. Cook and the girl. I commented on their post that there had been no signs of consent on his part for this story to be shared. I trembled as I typed, because I was so far past angry that I defaulted to my knee jerk “fury writing” mode. [Update: The Northeast ADA Center was able to find one article where Mr. Cook was interviewed, and I’m SO glad that they posted it. ]
We all have a responsibility to change what has been happening forever. And it won’t happen overnight, for sure, but we do need to call people out on it when they do it. And we need to complain to news sites when they participate in it. And when we remain silent on it, we allow it to continue.
For further reading on this subject, I invite you into the world of Carly Findlay Morrow. She is a writer, activist, and public speaker living in Australia, and she shared with me some of her posts as well as an e-book resource for teachers and parents. Her blog’s “about” page is found through this link (click on the word “link”) so that you may read more about her. Below are links from her blog as well as pieces that she wrote for the Sydney Morning Herald. These are all her written works, and credit goes fully to her for writing them and sharing them!
When parents overshare their children’s disability On a personal note, it was this post that somewhat altered the trajectory of my own blog. I do always talk to the boys about consent, and only post what they want me to, however I began telling mostly my own story after reading this. Because at the end of it all, they know their story best, and it is theirs to share if and when they feel ready. And I know my story quite well and have given myself permission to open up to the world one bit at a time and show who I am. And as I remove the mask I’ve worn for so long, I am becoming more comfortable and less apologetic about myself (“fury writing” and all).
Final note: the image at the very top of this post is a symbol used by the Autistic Self Advocacy Network. The image contains the words “nothing about us without us” and this I felt was particularly important for this post.