Wednesday, December 23, 2015

An Open Letter to The Mighty

Dear Editors, Authors, and Supporters of The Mighty,

I have had several articles featured on your site.  Bloggers that I greatly admire - both non-disabled parents of disabled children and disabled adults - have had pieces featured on your site.

Every time you approached me to republish an article on your site, I debated.  The last time you approached me, I outlined my concerns in an email and was assured that you were working on it.  You thanked me for the feedback.

Every time you approached me to republish an article, I consented, because I believe it's important to have my voice and the voice of other disabled people out there in a conversation that's overwhelmingly dominated by "feel-good" stories that position disabled people as pitiful objects or stories that paint disabled people as burdens on our overwhelmed parents.  And The Mighty has been surprisingly receptive to publishing stories from disabled people that critique the dominant narratives.  But when the latter stories exist literally side by side with the former, it's time to examine what you're really trying to achieve with your site.

The "Meltdown Bingo" you published this week was crude and unfunny.  I embrace humor to cope with my disabilities and I encourage others to do the same.  But the difference between the self-deprecating humor that many disabled people utilize and the humor of "Meltdown Bingo" is a question of perspective and nuance.  It is the difference between brushing myself off and making a crack about becoming floor pizza when I fall, and other people pointing and laughing at me on the floor.  Self-deprecating humor should be just that - self deprecating.

But "Meltdown Bingo" is simply a symptom of a systemic problem.  It was the straw that broke the camel's back.  The Mighty has had a long standing habit of posting stories from parents or Mighty staff that objectify and even humiliate disabled children and adults.

Food restrictions are presented as funny (similar to Meltdown Bingo).  Parents are described as "living with autism", as if autism is some unwelcome houseguest.  "Pity parties" are encouraged for parents when a child is having a difficult day, instead of figuring out where the problems lie and accommodating the environment as needed.  In short, children's difficulties are presented as being simply awful, not for them, but for their parents.

Some posts are downright mortifying.  This one goes into detail about the author's teenage son with Down Syndrome's bathroom issues, written under (I assume) the author's real name, along with a photo of her son.  There is no consideration for her son's privacy whatsoever.  When contrasted with the excellent new A&E series "Born This Way", that show adults with Down Syndrome working, socializing, and following their dreams, a post like this feels particularly jarring.  While "Born This Way" showcases adults with Down Syndrome having agency over their own lives and being offered respect (inasmuch as a reality show can offer anyone respect), this Mighty post exploits a teen with Down Syndrome's embarrassing situation for clicks and shares.

(I refuse to believe the argument that posts like this are written and shared to find solidarity and support.  There are plenty of private parent groups both on and offline where parents of children and adults with disabilities can support each other.  Sharing your child's embarrassing moments - especially a teenager - publicly is not the way to find support.)

The Mighty also repeatedly shares the type of "not-news-news" inspiration porn that presents disabled people as somehow amazing for doing ordinary tasks (like getting a job), and non-disabled as saints for having ordinary interactions with disabled people.  These types of stories promote stigma by portraying disabled people as awe-inspiring for simply living our lives, rather than critically examining the barriers to full participation in society for disabled people.  I want to see more stories like this one, critiquing inspiration porn.

And always, always, the term "special needs" is used.  Which of our needs are special, exactly?  The need to eat?  The need to go to the bathroom?  The need to feel comfortable in our environment?  The need to be treated with basic human decency?  Painting our needs as "special" reinforces segregation and pity.  Disabled people as a group almost universally reject the term "special needs", and the fact that The Mighty continues using it says to me that you either have not considered the implications of that term or you simply do not care.

If you want to make The Mighty into a site just for parents of children with disabilities, that's fine.  I'll be disappointed, but I won't complain.  If you want to change The Mighty into a site specifically for disabled people, that's fine, too (though a major overhaul of your staff and entire organization would be necessary in order to put disabled people in the front seat, so to speak).  But you can't have your cake and eat it too, unless you're willing to commit to screening each potential post and publishing only those posts that offer respect to disabled people and presume competence.  Because no matter how important our parents are in our lives, the disability experience is, first and foremost, about disabled people.

That doesn't mean that everything published has to be unfailingly positive.  I am the first one to say that disabled life is not all sunshine and roses.  But there's a difference between positivity and respect.  In essence, if it wouldn't be a story, or you wouldn't publish it if the main "character" in the piece was non-disabled, if you even think that it may not be a respectful portrayal, don't publish it.

The Mighty's tagline is "We face disability, disease, and mental illness together." I am writing this letter because, in spite of everything, I still believe in that tagline.  I still believe that parents of children with disabilities and adults with disabilities can come together to change the world.  Perhaps that's naive of me.  But I believe The Mighty can make change.

It's time to decide where your loyalties lie.  I'll be waiting.

Wednesday, December 2, 2015

Why This Latest "Heartwarming" Story Isn't So Heartwarming

Behold!  The internet has exploded with a viral story about a disabled person again!  A customer's interaction with an autistic employee is being called "heartwarming" and "amazing".  As you may guess, I'm not impressed.  Let's break this down, shall we?

The photo shows a typical sheet cake with a pink curlicue frosting border and the words "Happy Birthday Mandy" written in purple frosting.  The words are sloppy, but still easily legible.  The story that goes along with the photo is as follows:

"Picked out a cake at Meijer. Asked bakery-looking-employee if she could write on it for me. She said she would, and after a long time, she came and presented me with this cake. 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. The cashiers at the self check out didn't think it was so funny though, and called a few more cashiers and a manager over to look, even taking pictures. 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." So I guess the moral of the story is that kindness is important!"

*deep breath* Okay, there's a lot to unpack there!

So the customer asks an employee to do (what she thought was) her job.  Employee does the job, and customer thanks her.  Nothing unusual there, polite customer/employee exchanges happen millions of times a day.

Customer looks at the cake, realizes the handwriting is messy, and instead of politely asking for it to be re-done or politely asking for a manager, decides not to say anything because SHE THOUGHT IT WAS FUNNY.  She thought a somewhat substandard cake decorating job was funny.

Because of my CP, my motor skills are somewhere in the neighborhood of a kindergartner's.  This very well could have been me, in fact, I'd venture to say this is a BETTER job than I would've done.  I was extraordinarily proud of myself when I managed to address an envelope by myself, because it requires neat handwriting and the precise centering of the address on the envelope.  I'm 23 years old and this was recently, mind you.  I would be extremely upset if people laughed at my best try.  I've had college professors tell me that my best try was "not okay" and I "had to try harder", and guess what?  It made me cry.  Sure, this customer didn't TELL the employee she thought it was funny, but she also didn't realize the cake was messily decorated until after the exchange with the employee was over.  And since it's all over social media, I think the cat's kind of out of the bag now.  

That's the first thing wrong with this story.  You don't laugh at someone doing their job.  That's just mean.

The customer says the cashiers and managers "didn't find it so funny", yet they all gathered around to "discuss" and take pictures.  That sure sounds like mocking to me.  If I was that employee, I would have been mortified that my work was causing such a big deal.

Finally, we get a plot twist.  A cashier reveals that the employee who decorated the cake is autistic! She outed a co-worker's diagnosis without her permission.  That wasn't her place.  You don't out someone without their consent.  The cashier and managers made a big deal out of the fact that the customer was polite to an employee who did something for her - something that's ridiculously unremarkable - because *gasp* the employee had autism!

"You probably made her day." Why, exactly?  Because she was polite to an employee who did her job?  That's a normal, ordinary interaction.  No one gets to speak for me.  No one gets to tell other people what could "make my day" except for me.

"She's not supposed to decorate cakes." Regardless of whether or not the employee should have done something that technically wasn't part of her job, the phrasing of this - "she's not supposed to decorate cakes" - gives me an uncomfortable feeling, like the employee was a puppy being scolded.  Not to mention, disclosing what is and isn't part of a co-worker's job description to a customer is rude, at best.

The moral of the story is that kindness is important!  The customer wasn't kind.  The customer was polite.  She wanted to laugh at the employee's work.  That's not kind.  But all of a sudden, after it was revealed that the employee was autistic, the idea of "kindness" suddenly occurred to this customer.  The fact that the employee was disabled should not have had any impact on this situation, and yet, after the disability was revealed, the customer suddenly decided that she had been "kind" to the poor disabled employee and decided to go home and post it on social media, without permission from the employee or anyone involved.

And now that it's all over social media, it's almost certain that that employee is going to see it, and see that a customer is patting herself on the back for being a decent human being to her.  Because disabled people use social media, too!  Even if the employee herself doesn't use social media, the nature of a viral story like this means that someone connected with her will see it.  And if I was that employee, I'd be furious.

This is a prime example of inspiration porn - using and objectifying a disabled person to advance your own purposes and ideas.  The disabled person in this story has no agency or characteristics of her own, besides her disability, which is not even disclosed by her.  She is simply used for a moral lesson about kindness.  Sure, kindness and politeness towards people is important.  But it's important for EVERYONE, not just disabled people.  A normal customer-employee interaction wouldn't have gone viral.  It probably wouldn't have even made it onto social media.  But because the employee was autistic, the customer suddenly thinks she did a good deed by being outwardly nice to the employee.

Disabled people don't exist so that you can feel all warm and fuzzy about doing a "good deed" or being "kind".  We're human beings.  And next time, think before you post.  If you wouldn't make a story out of it if it happened to be centered around a nondisabled person, don't make a story out of it when it centers around a disabled person.  Simple as that.

(And if that employee happens to be reading this....I applaud your cake decorating skills, which are probably better than mine.  I'm sorry you were outed without your consent and I'm sorry the whole internet seems to think it's heartwarming for you to do something that was asked of you.  If it helps, I think you're perfectly, wonderfully ordinary, autism or no autism.

Love from a fellow motor skill impaired ordinary person!)