Author: Laura

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?”

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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.

 

What are your qualifications?

It’s a question that I get asked.  A LOT.
In my job I have the good fortune to do a lot of outreach with teachers, therapists, counselors (of the camp variety), program directors (also of the camp variety), parents, and many more people.

I talk with them about meeting a variety of sensory needs.

We strategize.

We spend a long time talking through very specific needs and finding solutions.

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Image is of a drawing of an incandescent light bulb, with straight lines coming out from the bulb as if to indicate a light has been turned on.

I love this aspect of what I do- both parts of my job are incredible, however the library outreach that I do often involves solutions that look rather like this:

[Images as follows- top left: a small room with white walls, colorful beanbags on the floor.  top right: a small space with a purple light and a beanbag on the floor.  bottom left: a clear plastic box containing toys, with the words “break box”.  bottom middle: a hand holding a pair of headphones with a cartoon-like panda face on the side.  bottom right: a young boy with short blonde hair leaning into a blue beanbag.  He is wearing a blue shirt with stripes and his eyes are closed.]

 

I typically share with parents that I have sensory needs myself, in addition to raising kids with a wide variety of needs.  This often leads to me sharing that I am on the spectrum along with my kids.  And I will discuss what some of my sensory needs are.

Occasionally I will be talking with someone (usually a teacher or Occupational Therapist) who asks the question: “Are you an OT? What are your qualifications?”

It’s an understandable question.  One the one hand, you wouldn’t ask your mechanic to do your dental work- you want someone qualified for that task.  On the other hand, I think that we live in a society utterly fixated on this question.  I suspect this is the result of generations of people who have been taught that the only road to success is a college degree.  Don’t get me wrong- that is one road to success, depending upon your personal definition of success.  I do think, however, that we have a long way to come in terms of recognizing that in order for someone to be qualified, they may have arrived there in a less-than-typical way.

It also brings up a very important point: Who better to ask than someone who lives it?

All too often in the world of disability-based conversation, much of the “talk” is happening without including those who live it.

To what end?

I think the mindset all along has been that the Experts are the ones who are qualified.  They’ve studied us from a clinical perspective and can certainly provide some of the really necessary information.  But unless they live with a particular thing themselves, can they truly know and understand what it feels like?  If you don’t wake up daily with anxiety, can you truly know how deep the impact can be?

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Image shows a seven-sided shape of multiple colors.  There are the silhouettes of six people in the middle, and the words “Nothing about us without us” in black print.

You may know this one: “Nothing about us without us”.  It’s an old phrase, and basically it means that conversations about (and decisions affecting) a specific group of people MUST ALWAYS INCLUDE that group and requires complete inclusion and participation in said conversation or decision.

We have a long way to go.

Fortunately for me today, I was speaking with a small group of people, one of whom knows me.  She very gracefully interjected when I stumbled over the question of whether I’m an OT, and she said “she is qualified by a lifetime of personal experience”.  And she’s right.  I’ve been living as me for a glorious (and often really awkward) 44 years.  I’m an expert on my sensory needs, and have become an expert on my kids’ sensory needs.  And after a lifetime of trial and error with a fairly small sample size, we’ve figured out quite a few things. We’ve learned things worth sharing. And sometimes it’s even the same stuff recommended by the experts.

I don’t have a degree.  I don’t know if I’ll ever finish, and that’s just fine by me.  I am doing the best I can with the information that I have, and I don’t let myself sell me short just because I’m lacking a piece of paper stating that I’ve Learned All The Things.

Where to start…

One of the things that my husband and I get asked a lot is “Where did you start”, in reference to our youngest son’s diagnosis.

Now, I have to say that over the years I have figured out that some of our story is not typical, in that things kind of just…happened.

We talked with Wonder Boy’s pediatrician, she referred us to Early Intervention.  As he aged out of EI services at age 3, we were fortunate to land a spot at the preschool we wanted him to attend.  And when he was done there, he transitioned into an integrated classroom in the school district.  I’m telling you, with him, things just happened in the ways we wanted.

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Things were different for Speedy, and I find myself perpetually in a state of “where do we start” where he is concerned.  Sure, he received a diagnosis- three, in fact. And it’s  become clear to me that perhaps we have been seeking help in ever-so-slightly the wrong direction.

I believe, quite firmly, that several things which have happened in Speedy’s life have played a big part in the trauma-like responses that we get from him:
Quick, highly emotional responses
Reactions which do not match the situation
Cries easily/quickly
Fight or flight mode always set to fight
Always in a state of either protecting himself or hiding himself
Heightened fear response

Getting help for this is not so easy, and therefore we definitely are feeling like many families do: WHERE DO WE START???

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We want him to feel good about himself, about his family, about his place in this world.  So, after talking with a great many people about it, we will try therapy for him. And possibly for me as well. Because every single day I say to myself “I don’t know how to be who he needs me to be”, and that makes me both scared and sad.

Where to start?  Trust your instincts.  Do a LOT of research.  Advocate.  And if you feel that there are unanswered questions, continue moving through the people who may have the ability to provide the answers.  We haven’t yet gotten there with Speedy, but I have no doubt we will.

 

What we did this April was…

What we did this April was…

Ever have to start an essay with “What I did last summer was…..”? Goodness, I hope so, otherwise I may have to change my title!

When I approached people at work this year about changing a decidedly abbreviated Autism Awareness Month movement to a very robust and enthusiastic Autism Acceptance Month movement, I wasn’t really certain anyone would want to listen.  I mean, plenty of people have loads of ideas, don’t they?  I needed to be sure I was well armed with better groups to align with, more current information.

And when I walked in with a month worth of social media ideas and community outreach opportunities, I was heard.

And for the first time in a very very long time, I feel as though what I say- what WE say- actually means something. I feel as though we could in fact help our community as a whole begin to change the narrative from one of fear-mongering to one of strength, inclusion, unity.

 

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Dreadful photo of me, I’d just returned from having the flu and pneumonia.  Gack.  But my friend Erin makes this photo better, yes?  

So… it’s nearly the end of the month.  I’ve photographed perhaps a hundred or so people (I truly haven’t counted) who have heard what I’m saying about understanding and accepting the autistic community.  I’ve heard their stories and shared mine, including my own personal move into self-identification.  This movement has, to my mind, done precisely what it set out to do: change the perceptions held by the non-autistic community about autism, and provide them new information which may help them be more open to inclusion.

And just because April is nearly done does not mean that my our work is over.  No way.  Inclusion, acceptance, understanding, support, love, they are needed twelve months of the year.  Our work has only just begun, lovies.  Are you ready?

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Image shows a woman with blonde straight hair, wearing a white shirt that has the words “autism is not a boys’ club” on it.  

Oh boy, it’s April again.

So, it’s April.  For many people, it’s Autism Awareness Month.  For all too many people, there will be blue lightbulbs and puzzle pieces everywhere.  And for those of us who are aware of their meanings, it can be the hardest month to deal with.
For our house, and happily for a growing number of people, it’s Autism Acceptance Month instead.  And here’s why.

So many people have written on why the blue is bad, why Autism Speaks is a bad organization, why the puzzle pieces are such a horrid representation.  There’s not really much point in me adding my voice in to the choir of voices all standing up and shouting WHY WON’T YOU HEAR US??

So I’ll take a different approach, and write about our journey through the last several Aprils.

April 2014.  As far as my husband and I knew, it was our first April as Parents Of An Autistic Child (or POAAC if you want to be that way).  In actuality, we’d always had an autistic child, but it was our first April since he received his diagnosis. Like so many parents, grandparents, aunts and uncles before us, we had been funneled towards Autism Speaks by our Early Intervention case worker, by our developmental pediatrician, by well-meaning friends.
We saw the blue lightbulbs and the puzzle pieces and did what a lot of people do: we adopted them as a way to represent what we were only just beginning to figure out.
I went to a tattoo artist and had him create what I thought was the perfect puzzle piece tattoo.
We changed our profile photos every April to “Light it up Blue” photos.
And then, slowly over time, we began to read more things written by people who are autistic.  We began to read about how Autism Speaks marketing very powerfully sells the idea of blue and puzzle pieces (though they weren’t the first to use it, that belongs to an organization in the UK) and uses it to get people to send them money.  But money for what?  Well, that changes from year to year and with new leadership.  Ultimately I see them as an organization for the as-yet-uninitiated.  It can be a landing spot for a few interesting pieces of information, however I don’t recommend spending too much time there.
Eventually, we found the Autistic Self Advocacy Network and found that the voices there are all autistic voices.  That they speak frankly and factually.  That they detail out the supports that are still needed, the ways we can help, and the ways not to “help”.  Over the course of the last few years, I have spent countless hours making sure that I read voices of people who are autistic, rather than the voices of people speaking for them.  Nothing about us, without us. It’s important.

April 2018.  By now I have realized why my children are autistic- it’s because I am too.  And that’s awesome!  We totally get each other, and we can teach them how to be advocates not only for themselves but for anyone who wants help advocating.  Instead of puzzle pieces, our symbol is the infinity symbol in a full spectrum of color, representing neurodiversity.

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A widely accepted symbol for the neurodiversity movement- an infinity symbol with a spectrum of color.

Instead of blue lights, we use regular light bulbs because who can see anything by blue light anyway?  I mean come ON that is the oddest thing ever.  In all seriousness, though, autism is literally a spectrum.  It’s IN THE NAME. So why represent only one color?  (By the way, Autism Speaks, when asked about the blue, actually told me that it’s because the founders’ grandbaby is a boy with autism)

So here’s my short list of how you can help.

It’s crucial that you talk with people on the spectrum to find out what is important to THEM.  Give people the time they need to answer a question.  Don’t force eye contact (we can do it, but it doesn’t come naturally and for some of us is physically painful).  Ask us about our interests, tell us about yours- maybe we have something in common.  Learn to recognize our overload signs and give us a quiet space to regroup if we need it.  Be. Patient. Help us to push for better representation in government.  Help us get the supports and services we’re asking for. Don’t STOP helping when April ends and May begins, please.

 

Happy birthday, sweet child

Happy birthday, sweet child

Tomorrow (specifically evening), Speedy turns 8 years old.  It’s hard to believe from his rocky beginnings how far he has come.

This was a child who nearly didn’t make it- when I was 25 weeks pregnant, my husband and I were in a car accident.  The van slid on black ice across a T-intersection and went off the other side, over a 12 foot drop.  First our van went, and then we watched in shock as three more vehicles slid through the same intersection and were airborne overhead (and luckily off to one side of us).

I spent four days in the hospital with internal bleeding, and there was great concern over whether we’d need to leave our hospital to be transported to a facility with a neonatal intensive care unit.

Speedy had other plans, and decided to stay put until he was full term.  Whew.  Unfortunately, the damage caused by the accident also caused him to be under great stress during labor, and I found myself watching a nurse who was watching the monitors.  “Come on”, I implored her to just tell us what was wrong.  The doctor arrived, and went pale when she saw how low his heart rate was. My husband and I all but begged her to just tell us straight what was going on, and she breathed a great sigh of relief when we said that of course we would agree to the cesarean section.

Some amount of time later (I really haven’t the foggiest- those medications they give you are spectacular), my husband was telling me that his first child was here and oh he’s so amazing and beautiful.  What I didn’t know at the time was that he was grey and not breathing and definitely not responding.  My poor amazing stoic husband, after so many years working in emergency medicine, knew exactly what was happening and wouldn’t tell me. Not then.

It wasn’t until many hours later that I would be told the tale of my not really alive baby who they revived.  And even now today I recall the shock and the pain of being so close to losing him.  Twice.

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I have to think that with everything he’s been facing for the past few years that there must be some connection between in utero trauma and his trouble with emotions, attention, and many other things.  And we’re starting to explore ways to support him best, keeping in mind that we may never know if this impacted him at all.

At the end of the day, I see this amazing child, this champion of friendship who loves with his whole being, who smiles with his whole face, who throws himself body and soul into everything he does.  He wants everyone in the world to be his friend, and he wants everyone in the world to be happy.  And what an incredible gift he is to us, to the universe.

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Photo credit: Rachel Philipson