Monday, January 11, 2016

I Don't Like Disability Feel Good Stories (aka "Inspiration _ _ _ _")For 2 Reasons






(originally written & published on January 11, 2016)

There’s been a firestorm of debate and anger within the disability writing community over the past month.

A website called The Mighty  has been at the center of the controversy.  They are a disability-focused online publication whose tagline is:  

"Real People. Real Stories.  We face disability, disease and mental illness together."

They have re-published a few of my articles before and gave Sesame Street really great coverage when we launched our autism initiative.


So I've got absolutely no beef with The Mighty.

However many writers with disabilities and folks within the disability advocacy community have been upset with The Mighty for awhile and a recent post on there called "Meltdown Bingo" was the straw that broke the camels back and they reacted loudly.  Check out the hashtag #crippingthemighty .

The debate and issues are long and have many tentacles that I don't want to get into right now.  Some of the debate stems from writers with disabilities feeling like the parents of kids with disabilities who write blogs shouldn't (among other things) speak for their kids who can't speak, shouldn't post embarrassing things about their kids ("Don’t post about your child what you don’t want to have posted about yourself.") and shouldn't write so many things about how hard things are.

I've changed my ways a bit over my blogging years but I'm still guilty of all of that, so I'm sure the writers with disabilities and folks within the disability advocacy community aren't huge fans of mine.

However, the other issues the disability advocates had with the Mighty is that they promote too much "inspiration porn".   

I didn't come up with the phrase inspiration porn. I call them "feel good stories".

That is specifically what I want to touch on today because this is one of those rare times that the disability advocacy & I seem to be on the same page.

They don't like inspiration porn. And guess what neither do I.

To understand why I don't like inspiration porn let's go into the Way-back machine before I started writing the Autism Daddy blog.

I've written before that I started this blog because when I was looking around nobody was showing the reality of what it's like living in Autism household.

Too many other blogs were in my words presenting a "rainbows and sunshine" view of being an autism  parent.

And before I dove into this autism blog and community the only stories that were being shared with me and that went viral with the mainstream media and the Nero typical folks were these feel good stories/inspiration porn.

The autistic kid who scored six 3 pointers at his high school basketball game is a perfect example.



Remember that heartwarming story? (refresh your memory HERE if you don't remember it)

That story happened TEN years ago, in 2006, and I still get sent a link to that story at least once every six or seven months from somebody who acts like it just happened yesterday.

Neat story but in my opinion the players and coaches did a little too much patting themselves on the back.  More on that later.

But more importantly these types of feel-good stories didn't show my reality.

It seems that the only disability stories that go "viral" are these feel-good stories and it wasn't until I joined the autism blogging  community did I realize that there's all bunch of other people out there writing reality.

-------------------------------------------------------





----------------------------------------------------------


Whether it be parents writing about their ups & downs or people with disabilities writing about what it's like being in their shoes.

So basically I've got two main problems with inspiration porn. One that I think is totally in step with the problems the disability advocates have and one that I think they won't agree with at all and maybe is unique to being a parent of a kid with a disability

The one that the disability advocates will agree with is that very often, in my opinion, in the stories that go crazy viral the kid with a disability didn't do anything miraculous.  They just did something that all kids do and we're treating them like a God for something that we should be happy that they did.

Or the story slants the other way and show neurotypical able-bodied people just doing something nice and being a decent human being and the story goes viral and then these people get treated like some sort of a God.

Here's two inspiration porn blasts from the past...

http://goo.gl/0RGp7p

http://goo.gl/42adca

And I don't blame the parents for writing these stories or thanking the people or businesses that were nice to their kid. But when you're a blogger and you write all the time, and then you write a throwaway story about a typical person doing something nice and that's the only story you ever wrote that goes crazy viral it makes you raise your eyebrows and makes you go hmmm...

The same thing happened to me.  I wrote a post years back called A ROUGH Memorial Day With A FREE Meal Thanks To Autism :) and a minor part of the story was that a stranger saw our struggle and paid for our meal and left us a nice note.  I included a pic of the note in the post and I guess with that title, and with that pic I was guilty of "inspiration porn" because that post got a ton of hits....  

Anyway, the latest example of inspiration porn that hits both of these categories is the early December story about a woman who bought a cake at a store and had an encounter with an employee with a disability.

Here is the sweet version of the story from the mainstream media in this case NBC News.

Birthday Cake Decorated by Employee With Autism Goes Viral




A Michigan woman's photo of a birthday cake is going viral after she shared her sweet encounter with the autistic bakery employee who decorated it with a personal touch.

 Lisa Sarber Aldrich of Grand Rapids wrote on Facebook that she went to a Meijer grocery store to pick out a cake when she asked a "bakery-looking employee" to write a message for her.

The employee took a while to return, and once she did, Aldrich realized it wasn't the "happy birthday" decoration she expected.

 "I looked her in the eye and said thank you before I even looked at the cake. After looking, I nervously laughed and headed to check out — it didn't really matter to me that it looked so bad — I thought people would think it was funny," Aldrich said on Facebook.

Cashiers and managers came over to look at the cake when Aldrich went to pay. A cashier told her the employee has autism.

"To my surprise, after they discussed it, one cashier put her arm on my shoulder and said, 'The girl who wrote that has autism. Thank you for smiling and thanking her — even though she's not supposed to write on cakes, you probably made her day,'" Aldrich wrote.

 Aldrich's post has been shared over 93,000 times on Facebook. She says she is surprised by how much attention her story has received.

Meijer spokesman Frank Guglielmi confirmed the details of Aldrich's story to NBC News, and said the grocery chain is proud to have staff that includes people with disabilities.
 "This team member was trying to provide great customer service, and our customer was very kind in the way she handled the situation," Guglielmi said. "We believe this story seems to resonate with people because it sends the message that a little kindness can go a long way." 
And something about that story didn't sit right with me from the first time I read it.  But as expected it went crazy viral!.  

And then I read this disability advocate's blog.  Her blog is called That Crazy Crippled Chick and on December 2nd she wrote a post called Why This Latest "Heartwarming" Story Isn't So Heartwarming 

Basically it is a blow-by-blow account of all the things that are wrong with that story through her eyes as a person with a disability.  She hits the nail on the head on every point.

I won't copy & paste her whole blog post here because I don't have her permission (and she's probably not a big fan of mine :-), but I learned a ton from reading it so I BEG you to read it and read how many things were wrong with that cake story and why it's a perfect example of inspiration porn.  

I BEG you to read it now.  Click here now!  We will wait for you.

Ok, you're back... did you read it?  Do you get it now?  

Anyone that's my first issue with inspiration porn...that's the one that's in step with the disability advocacy community.

My other issue is where me and the disability advocate community probably part ways.

My problem with this inspiration porn is that very often that is all you see read or hear about in the mainstream media I wrote this in a previous blog post years back that totally pertains to this.


People are always sending me links to feel good stories about autism. They mean well, but they don't know the true side, the tough side...

And lately when autism is on the news it's a feel good story about a high functioning kid doing something great and profound. And I think that spins autism in too positive a light. It makes people think that autism is not that bad. 

"They’re just a little quirky like the Asperger’s rocker on American idol a few years back" people might think.

 I think America needs to see the dark side of autism more often, like my son, the nonverbal, non-potty-trained 8 year old who bangs his head, won't eat, has crazy stomach/ bowel movements and severe ADD & ADHD on top of his severe autism.

I like to read the feel good stories too...but the feel good stories are all you hear/ read/ see about autism in the mainstream media. 

And I honestly think when we are fundraising or trying to get more government $$ for autism if all people know are the feel good stories people might think, "why give them research $$, they're just quirky kids...."

And that's where I stand on inspiration porn for the most part I don't like it.  It is "click bait".  For the most part it's just a way for the mainstream neurotypical, able bodied community to read about disabilities in a sweet and kind and gentle way that makes them feel better about themselves...  And in the grand scheme of things they are not even scratching the surface. 

I'm going to end it there.  Can't wait to hear everyone's thoughts and opinions, which I'm sure there will be plenty of.  

And if you're part of the disability advocacy community please know that I'm reading all your stuff and I see your concerns on all of these issues, and while it may not seem on the surface that it has changed my writing style, just know that it has...

More on that in a future blog post.

THE END!
--------------------------

  If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above?  This way I can make a little money.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!

 _____________________________________






12 comments:

  1. Thank you for this blog! I'm so glad families with children & loved ones like ours are starting to finally speak out.

    ReplyDelete
  2. Yaas! Do many parents really get much our of inspiration porn? I know I just keep scrolling and look for the real stuff. A fellow Autism mom I was "set up" with the other day actually tried to feed this shit to my face. "Well we're not given anything we can't handle" and "It really is a blessing." Such BS. Thanks for keeping it real AD.

    ReplyDelete
  3. yes I agree with you. God Bless

    ReplyDelete
  4. I looked at the Crippled Chick's blog. While I understand her stance and agree with ALOT of her points she made. I do believe there is a small place for the so-called inspiration porn. I too get links emailed to me and links shared on my FB page. Sometimes repeatedly. My friends and family in their mind are attempting to do the same thing the article is attempting. Give Hope to a family with a child that has a (disability or special need or whatever the correct PC term is) No not every autistic child or child on the spectrum is high functioning and able to do the things a NT can do. We as parents want our special children to fit in and be accepted. Nobody wants their child excluded. Yes some days seeing the same article again for the 5th-6th time may take away some of the Hope you initially had when you read it the 1st time. I want my child to be happy and he is most of the time. I worry about his future when I'm no longer around. These feel good stories set out to make you feel good. Yes the other side of the story isn't being told as much and it should be. We learn from failure as much as we learn from victory. But dammit Victory always tasted sweeter to me. And I want my son to taste it.

    ReplyDelete
  5. 100% agree AD on the issues with inspiration porn. Non-speaking ASD people need help to self advocate via their caregivers and have challenges that are more analogous to intellectually disabled people rather than high functioning ASD individuals. The umbrella is so big that we are getting lost......

    ReplyDelete
  6. I agree with this 100%. I don't get the attention these articles receive. They are written to make a neurotypical person to feel better, and are in no way written about the reality of Autism. These 'Inspirational' articles are not for the Autism community, they are fluff pieces that make Autism look like its cute.

    ReplyDelete
  7. Thank you AD for bringing this perspective to light. Autism hits hard from every angle of the spectrum. As a parent of a high functioning teen with Autism, I guess I should feel lucky that its not worse. Yet my kid exhibits varying degrees of all of the same symptoms of those on the spectrum that are more severe. As parents we watch the daily struggle he has, year after year. He is now no longer able to live with us at age 16. It is heart breaking.

    ReplyDelete
  8. Inspiring to me is when my autistic/DD son spends a day without a meltdown. or when he was finally toilet trained in his teens. Never see news stories like that.

    ReplyDelete
  9. Agree!!!!!!Thank you for another great blog.

    ReplyDelete
  10. Refreshing read from the unrealistic stories and posts that I cannot relate to. Saying it how it is - perfect thank you

    ReplyDelete
  11. Refreshing read from the unrealistic stories and posts that I cannot relate to. Saying it how it is - perfect thank you

    ReplyDelete

LinkWithin

Related Posts Plugin for WordPress, Blogger...

© 2011-2018 Autism Daddy / Frank Campagna. All Rights Reserved