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.


Unknown said...

The lowest level of litmus test:

Would the disabled person easily be replaced with (a) an orphaned kitten or (b) a lamp in the shape of a lady's leg? Then you are (a) at best being dehumanizing or (b) turning the disabled person into an object, a prop for your very special story.

Anonymous said...

Fabulous summary of this messy situation!

Thank you for your service to our community by thinking and writing clearly!

Anonymous said...

Thank you for writing this letter. I've been feeling the same way for a while and just haven't figured out how to express it. I personally don't like the name or the tagline of the site. To me, it even looks kind of a pity thing and not so much a movement toward a quality and universal respect. To me, the name and tagline of the website completely summarizes how you feel about this site and the articles at publishes. I don't think people with disabilities are mighty. Not any mightier than anyone else. When we talk about facing something, especially in the context of disability and society, it's like we're putting our game face on and a pitiful situation. If it were me, I think I would rename the site something that even looks the concept of moving forward and the tagline would reflect the same. Because isn't that what we are ultimately looking for? They ability to move forward and to eventually dissolve the barriers that not only keep us out of public spaces and processes, but keep us out of the conversation entirely?

Smart Ass Cripple said...


Unknown said...

There also appears to be some sort of passive, systemic temperamental discrimination on The Mighty. The stories are fabricated to look like they are all from MelSans. It creates the illusion of needing a certain temperament in order to "face disability and disease together." Since temperament is the basis for why we act the way we do, it is an integral Look at my post "Why You Advocate the Way You Do" for more information.