Inspiration Porn and Responsibility

You may think this post will debate the merits or demerits, as it were, of inspiration porn.  It won't.  I've seen bloggers get hammered for daring to choose a side in this hot debate.  I don't care how you feel about it.  Inspiration porn, for those of you who don't know, is that 'feel good' video that circulates the internet making people tear up at the kindness of others or marvel at the courage of a disables person etc.  I have included a video below to help illustrate the definition of inspirtation porn.  I love this video and if that's wrong then I don't wanna be right (okay, that's a little dramatic, but I do like this video and I did cry).  

I understand that videos like this can be a problem for some in the autism community. You can read about the dangers of inspiration porn here or here.  I get it.  I get the "we are not here for your inspiration" crowd.  Really, I do.  I still enjoy these videos and stories for reasons detailed by Stuart Duncan "Autism Father" here.  So, I guess I'll just lazily let others detail that debate for you using links.  Sorry about that.  

I wanted to point out that I personally think inspiration porn in the autism arena is ok for lots of reasons.  BUT……we have a responsibility to remind people that there is another side to autism.  It is terribly irresponsible of us to allow the notion that autism is a misunderstood gift, or a quirky difference in personality.  Autism can be a tidal wave of devastation for some families.  It isn't always the story of a child who can name all the elements in the periodic table at age three, or the child that, while socially awkward, is accepted by classmates and the community because they 'understand' and 'accept' his autism.  This is not to say, that those who are 'mildly' touched by autism are having an easy go if it.  I know, as well as anyone, how hard it can be for those high-functioning kids who suffer from bullying and extreme anxiety.  

What I am saying is that if we want people to understand autism then we have to share the truth of what it can be.  In some cases, autism is the severely touched, non-verbal, self-injurious children that will need constant care for their entire lives.  Autism is epilepsy and terrifying seizures.  Autism is financial ruin and depression and divorce.  Autism is guilt and blame and confusion and fear.  I don't have to tell you that parents of the children with severe autism love them every bit as much as you love your children.  I do have to tell you that they may never speak, their parent's touch hurts them, eye contact is painful, they bite themselves and bang their heads.  They scream, they cry, they struggle to exist.  They wear diapers.  Their parents must physically restrain them to protect other family members and the child from harm.  Can you imagine having to lay down on top of your 6'1", 200 pound son as he melts down like a two year old, in order to calm him and protect the rest of your family?  

This is the reality for some people.  So please, when you share your videos about autism, remember we are responsible for sharing the whole picture.  Below is an example of some self-injurious behaviour in an eight year old boy.  Can you see why his mom might not appreciate the celebration of all things autism?  Can you see why she might need her story to spread quicker than the feel good story below this example. Guess which one went viral?  

If I am being honest I don't really know where Kate sits on the spectrum.  I like to think she is high-functioning but as I have said before, I can't get any of her clinicians or doctors to say those words.  Maybe, they don't know either.  So, maybe she is moderately autistic, which is fine.  We will deal.  Either way, we know the 'feel good stories' are not the only stories and we'll make sure you all know that too.

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