Month: June 2018

Consent and social media, and how avoid the pitfalls of inspiration porn

Consent and social media, and how avoid the pitfalls of inspiration porn

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?
No.
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!

Inspiration as objectification of disability- a resource for teachers and parents by Carly Findlay

What it feels like to go ‘viral’

How to win the internet. Or how to defend yourself when your photo is ridiculed on Reddit.

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.

Should we?

I have not been sure just exactly how to start this post.  Words and questions have been circling around in my brain, and sorting through all the noise is sometimes difficult.  But as I’ve been reading articles and other people’s posts, a phrase mentioned by a coworker keeps getting louder:  “Should we?”

10406613_10205524769660900_5541946317316111880_n

This is a really important question for most people, and one that all too often gets lost in the noise and chaos of daily life and in the desire to “do good things”.

I should probably back track a little so that this makes more sense.  A lot of conversation happens daily around various treatments, therapies, and courses of action for people with disabilities.  Up until fairly recently, the only voices being heard and given any credence whatsoever were voices belonging to parents, therapists, and other types of providers.

Take a moment to let that soak in.  Who is missing from that sentence?  Yeah.  The disability community itself.  Like many other communities, it is widely varied.  But it has something really vital in common, no matter what diagnosis you are talking about.  This is a group that is highly marginalized and is abso-freakin-lutely determined to be heard.

[As you have read before, my place in that community has greatly evolved.  The thing preventing me now from seeking validation regarding my diagnosis is the fact that we’re also saving for a down payment on a house (we do a lot of hard decision making about spending lately).  But I know me better than literally anyone on the planet.  So really it would only be a validation of what I already know. ]

I am proud to be in the fray, as hard as it is some days.  It’s important to ensure that the world hears the voices of the people most impacted by any treatment, life decision, goal.

Which leads me back to the question: should we?

Before a service is provided to someone with a disability, are we asking that person what they want?

Before a behavior is changed to something “socially acceptable”, are we asking the person being treated whether this is important to THEM?

Before we add a goal to their service plan, are we asking people what their goals are (and then supporting those goals)?

SHOULD WE?

(a little louder for those in the back)

S-H-O-U-L-D    W-E ?

Hang on, I might need a bigger font.  Except that I can’t do that in WordPress.  Dang.

Look, I’m not going to delve into one specific example of a therapy or another.  All I ask is that those of you making these decisions look deep into yourselves.  Ask yourselves why you are making the decision and then go from there.

For what it’s worth, here’s an example of how it should go.  Speedy was present for his recent Individual Service Plan (ISP) meeting.  He was asked what he wants.  He was asked what his goals are.  What his  dreams are.  In a room with seven adults all potentially put in the position of making decisions for him (since he’s 8), he was asked what he wants.  That is how it should go.
Wonder Boy was also present for his ISP, and opted to curl up in a chair and read.  And that’s just fine! He did participate some, and that level of participation will increase as he gets older.  At age 6, a room full of adults really isn’t all that interesting.