A Mighty Mess

piles of questions stemming from the mess that the mighty has tipped over, some answers and some clarifications

There was an article that was posted on The Mighty recently. The article in and of itself was insensitive but it was really just the straw that broke the camel’s back – the camel being the disabled community.

Posts flew off of computer keyboards and onto the internets, #CrippingTheMighty was on Twitter, longer articles were developed and some hit mainstream media (check out the Disability Visibility Project for more). Parents and the community of parents of kids with disabilities reacted. Some of the reactions were with confusion over “Cripping the Mighty” (asking questions like,“but I thought “cripping” was a bad word?“) and others over Inspiration Porn (why is something inspirational now said to be pornographic?“).

In response to this, a guideline – linked HERE – was written by Alice Wong, Liz Jackson and R. Larkin Taylor-Parker over on Medium. The piece was intended to clarify pieces and also to ask for support, unification and cohesion between the parent and disabled communities. We want to be working together. 

Then this came out on Washington Post – Writing for The Mighty – and it’s the straw that is breaking my back at this point.

I was exasperated with The Mighty and with people that wanted to contribute to that site in light of the rampant click-baiting going on over there, then I was genuinely confused by reactions that I saw from parents online towards the disabled community’s movement to get people thinking about what is being published about us.

But now I just kind of hit my head to the desk and wonder about this MESS. And realize (as I hit my head to the desk) that this is an excellent opportunity to talk about some points and answer a few questions that I saw online. It’s also a great time for us as a community, to talk about things that matter. So, first off:

1. Inspiration Porn

This is a term that was coined by Stella Young (who was emphatically not, as some parents have suggested, a whiner with nothing better to do). Her post about that is linked HERE, and it’s a classic. The term is used to describe the objectification of people with disabilities, and it implies that we are only here to inspire and make people without disabilities feel good about themselves.

Parents have asked questions like, “what about modeling? what about Changing the Face of Beauty? Don’t we want people with disabilities to model and isn’t modeling objectification?”

My answer is this:

Classic Photo of Inspiration Porn

the child has a visible disability and is participating in a sport. The caption reads, "your excuse is invalid".
image description: a child using a wheelchair is playing basketball. The caption reads, “your excuse is invalid”.

A Child with a Disability Modeling

target ad with children modeling clothes. one of the children has Down syndrome
image description: 5 children are dressed in fashionable clothes. One child has Down syndrome

In the first photo, the child has a visible disability and is participating in a sport. The caption reads, “your excuse is invalid”. This photo is clearly making the child an inspiration, calling on the viewer to buck up and stop making excuses for not doing something (not to mention guilt-tripping other people with disabilities for not “just doing it” and pulling themselves up by their bootstraps and doing whatever).

In the second photo, a child with a visible disability is with other kids. All the kids are good looking and wearing fashionable clothes. The intent is entice people to buy the goods – it’s an ad for Target, after all – but here, a child with a disability is included. A child with a disability is a marketing aid “look, your kid can look as good as this kid does if you only buy our clothes!

So is modeling “Inspiration Porn”?

Modeling isn’t “inspiration porn” when it’s about inclusion and promoting acceptance. The child with a disability is seen and being included with an attractive bunch of kids, the child is not being used to inspire people in their own personal lives and tell you to be more, do more because they have a disability and they are modeling.

2. Telling Your Story Does Not Equal Telling Your Child’s Story

Nobody said that you should not tell your parental story. NOONE SAID THAT. The stories of parents who raise children with disabilities are extremely important, they are vital glue that helps us in the relay that is parenting children with disabilities. We learn from each other and grow with each other.

But telling our stories as parents is one thing and telling our kid’s story is another.

Deanna Smith just wrote a fantastic post about that – it’s linked HERE. In the post, she talks about the things she can write about with ease at this point in Addison’s life. These are things that she sees her daughter experiencing, her growth, her learning and achievements. The journey with her daughter is shifting as it becomes less about dealing with the physical emergencies and steep learning curves related to disability, and becomes more one of parenting in general.

Are there rules about this? No. 

There aren’t any rules. We’re operating on what makes sense from the “Do Unto Others” perspective. Think about your future self as an old person – would you really want your kids to post narratives on how you pooped in your pants? Want your child to write articles and publish them on national media, talking about how mom had a stroke and she just can’t deal with your drool?

Don’t post about your child what you don’t want to have posted about yourself.

But that is not a rule; it’s just what the disability community is asking parents of children with disabilities to do.

3. None of Us Have Done This Before: No One is Perfect

This is actually an important moment to me, because we are all having discussions RIGHT NOW that are the type of discussions that help us shape culture. We are re-thinking and examining our values, prejudices, assumptions. We are looking at what we say and do, asking hard questions and facing some uncomfortable truths.

One uncomfortable truth in this for me is that I’ve messed up myself. I’ve written Moxie’s story before using my own words in Moxie’s voice. I’ve also never been a parent before, I’ve never been the disabled parent of a child with a disability that is different from my own. I’ve never done a myriad of things that I am currently doing (including being an adult!).

And I know YOU HAVE NOT EITHER. This is a first-time adventure for all of us (unless you believe in reincarnation).

Mistakes come with the territory.

We are all in this together and we are all learning.

Parents of people with disabilities haven’t been parents before, and may have never had a connection with disability before. Even if they have, they may have known nothing about their child’s disability. And even if they did, they did not know their child. Those of us who are disability rights advocates and activists have also never done this before, and we are trying to find our voices and frame our beliefs. We know on a gut level what feels right and what feels wrong but it can be very hard to articulate that when you’ve had a lifetime of being shushed and TOLD what you feel or want or should feel, or want – and what you need to “overcome”.

I think that parents who feel that the disabled community is coming down hard on them should keep that in mind and show the disabled community some of the same sensitivity and gentleness that they have come to expect from the disabled community themselves.

We know that you are learning and we give you space to grow. We ask the same from you but also that you understand that we are really, really tired of sitting at the back of the bus.

4. Ableism and Leaning into Discomfort

“Ableism” is a relatively new term. It’s simply what is to disability as “racism” is to race, “ableist” is to disability as “racist” is to race.

Ableism is threaded through our (US American, Western) culture. It’s in our sayings, our stories; it’s literally everywhere. Disability is not something that is desirable in this culture; those of us with disabilities are encouraged to “overcome” it, we succeed “despite” our disabilities, according to popular opinion, not because of them. The child with Down syndrome is often said to “happen to have” Down syndrome, as if this was an incidental thing and not present in every. single. chromosome in their body.

Some of these sayings are incidental, some of them are intentional, some are meant to illustrate a greater point (as, in the case of Down syndrome, that the child is first and foremost a child with all the inherent potential that every child comes with).

But there’s a hell of a lot of ableism floating around out there, and the disabled community is starting to call people on it.

When called upon it, defensiveness has ensued.

My friend Melissa asked a great question on Facebook today. She asked,

I would love to see more dialogue around this question:
Why, as a parent, do you feel silenced (and defensive) by the voices of the disabled community?

I think it’s a great question because answering it honestly is a lean-into discomfort. Leaning into discomfort is often an opportunity for us to grow as human beings. It takes real courage to face our deepest fears and to be sincerely honest with ourselves.

It reminds me of peeling back an artichoke – you have the thorny leaves and the risk of pricking yourself. It’s not particularly fun. But after you’ve peeled them back, there is the heart in all its glory, waiting for you.

Asking yourself about your own ableism and about ways in which you are ableist isn’t comfortable. And once you’ve seen it, it’s not easy to un-see. Once you’ve seen it, most of you know that you need to do something about it, and that’s also not much fun.

The real fun comes when you’ve done some of the work and can feel the shift in yourself. When you get to that place where you recognize that you had the moxie to risk the pricks, lean into discomfort, and discover your heart in all of it’s courageous glory.

_______________________________

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Meriah
Meriah Nichols is teacher and artist who lives in a yurt off the grid. She is deaf, has 3 kids (one with Down syndrome) and a lot of chickens. She writes about travel, disability, and getting dishes done. She likes her tea Earl Grey and hot.
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@meriahnichols

#deaf mom, teacher & #disability activist, living in a yurt #offthegrid. 3 kids (1 with #downsyndrome), a camera and a lot of chickens. Never a dull moment
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