Well… I tried

This blog post has multiple starting points all converging into a center that I want to attempt to convey, and I’m having trouble figuring out which of those points to use. I rather want to use all of them.

Ok, so I’m not much of an activist. I don’t march on Washington and I’ve never met a senator to express my viewpoint or joined any sort of rally ever. Rallies are not sensory friendly. However, in my own small way I try to make my voice heard. This is about one of those attempts. Sadly, I don’t think I succeeded.

Moving on, there’s this journal called Narrative Inquiry in Bioethics, or NIB for short. I think what they do is AWESOME and I got super excited when I first discovered them. From their summary, they explore “current issues in bioethics through the publication and analysis of personal stories, qualitative and mixed-methods research articles, and case studies.“ It’s the “personal stories” part that really got me going. Basically, they put call-outs for papers from anyone who has had an experience with whatever bioethic issue they are exploring. I find myself hoping that someday they will put out an issue that I could write something for. My point here is that I want to make it clear that I view this publication in a very positive light. I LIKE them, I like what they are doing, I like the whole thing. It’s an awesome approach to academic exploration of a topic, and I do think that personal narratives are important.

So when they posted this…

(image description: pale pink/peach background, text reads “don’t be ashamed of your story it will inspire others)

… I was a little put off. You might wonder why. I mean, they clearly meant it in a positive way. However, it definitely slid too far towards “inspiration porn” for me to be at all comfortable.

I’ve pondered trying to write up a post about the problems with inspiration porn, but I’m not yet at the point where I can really go over what’s wrong with it and why. Luckily, lots of other people already have and there are massive amounts of information all over the internet where people talk about how inspiration porn is harmful. I am leery of attempting to sum it all up but I fear I must as asking anyone who reads this to go looking for the answers elsewhere seems a bit much. Basically, inspiration porn tends to take ordinary experiences and acts like they are extraordinary, because the person who did those ordinary things is disabled. It tends to treat disabled people both as sad, broken things we can’t really expect to be functional in any way, and to reduce their lives and struggles to some inspiring moment for the benefit of a person who is not disabled (I hesitate to say “able bodied” as it is not always about physical challenges). Basically, inspiration porn is bad.

Now, to be clear, I do think that there are very good reasons to share and explore personal narratives. We can learn from people’s stories, we can find patterns that are good, or patterns that need to be fixed. We can, for instance, explore a bioethics issues from the perspective of the people who have actually experienced it. That said, “because someone, somewhere might find it inspiring” is NOT on the list of good reasons to share personal narratives.

So basically, when NIB shared this image, I was put off. I thought they were better than that. I thought they were doing something awesome. I thought that maybe they should know. So… despite the hubris and presumption involved in calling out an academic journal associated with John Hopkins University, I said something. I tried.

Me: “In the hopes of giving a gentle nudge… have you ever heard the phrase “inspiration porn” and what disability activists think of it?”

What’s cool is they actually did reply… but I don’t think they understood. They clearly did not look up the phrase before replying to me.

NIB: “No, never heard the phrase. This meme fits NIB pretty well, not just our symposium on disability but all our symposia. Each issue of NIB is about sharing stories to help bring more voices to the discussions.”

So after thinking about it for several hours, I tried again.

Me: “I’ve had to think about this for a while and unfortunately this is not a topic I am particularly articulate on just yet so ultimately I will need to refer you to other sources.

“First of all, I think NIB is a great project. I got excited about it when I first learned of it, and I hope someday that you will have a call-out for papers that I can contribute to as I would love to be able to write and share my own story.

“So it was really disappointing to me to see this meme. “Inspiration porn” is a problem, and I had thought that NIB was better than that. I think you still can be, but you need to talk to disability activists to learn the problems involved in reducing real human lives to “inspiration.”

“There is a lot out there on the internet, but here is a place to start. (link)”

That was the end of the conversation. They never did reply to me, so I’m guessing my words did not make it through. Which is sad, but ultimately not surprising. I was presumptuous, I stepped well outside my comfort zone to basically scold a journal I thought maybe needed to learn something. While I tried to be gentle, that doesn’t change what I did.

Since then I’ve had mixed feelings about the incident. Partly I wonder if I should have just kept my mouth shut, not said anything, just left it all alone. I’m also a little disappointed that they just don’t seem to care. I worry that in the end, this is just another group that wants to talk about without talking to. I don’t know for sure; I can’t really know, really. But what I do know is they apparently don’t have time for me, or time to look into why disability activists don’t like certain things.

I still like NIB, at least in concept. But this interaction has soured them just a little in my eyes.


Filed under issue, that's not helping

9 responses to “Well… I tried

  1. merelyquirky

    The call for stories, to me, leans beyond inspiration porn into voyeurism. Due to the sort of manipulative/disrespectful tone (ie, if you cared about other people at all, you would risk retelling a difficult tale and the heck with what is healthy for the teller) this gets my back up. Sounds too much like many IRL comments I’ve gotten.

    Having spent my life so far defending my choices, my way of being, at every turn, I’m sick of it. How many times has someone taken my declining to answer a nosy question as rudeness/shame, and insisted to me that it’s ok to tell them what they feel like hearing about. But I am under no obligation, and I’ve had enough.

    Who do they think they are? And why do people assume my sense of privacy is due to shame, rather than my life just being my own business. I’m not on a ‘reality’ tv show.

    • That’s a good point. Requesting stories from people who want to share is one thing, but pushing people to share and tacitly implying that shame is what stops people from sharing is something else entirely.

  2. Possum

    As I see it, speaking up is a good thing to do even if you’re ignored. They have no excuse now to claim they weren’t exposed to the concept. Whoever read your email, “inspiration porn” is now part of their awareness even if they haven’t opened to it (yet).

  3. First of all, I agree that the meme is too close to inspiration porn for comfort. To me, it implies that while my life might be miserable and worthless for myself, I should keep on being miserable for the sake of others who are less miserable and will therefore be inspired by how I push through. I am not miserable. I am not ashamed of myself. If the concern is shame (which is a valid concern), it would be better if the message was along the lies of “don’t be ashamed of your story, period.” My story is MY story and your story is YOUR story. No one exists for other people, inspiring or otherwise.

    Second of all, while I don’t know you and it may be presumptuous of me to try to offer validation, I really would like to say that I think you approached this in the absolute most perfect way possible. You used your voice about something you care about, and you did it with the respect you feel the recipient deserves (a lot!). You were polite and clear, and when you felt like you couldn’t be as clear as you wanted, you referred them to other resources. In my opinion, your actions – whether your received an appropriate response from them or not – showed great courage and conviction, as well as a tremendous amount of respect for the publication, yourself (and your values), other people who may be hurt by this meme and the mentality behind it, and the creators of any resources you provided.

    I hope I do not sound hypocritical – I’d hate to turn a post regarding the hurtfulness of inspiration porn into inspiration porn itself! – but to me, what you did was inspiring. I am inspired by any person doing something strong and both inwardly and outwardly significant, powered by their values and experience. One human being inspiring another. That’s ok, right?

    • well, I don’t think there’s anything inherently wrong with finding an action inspiring. The difference is between finding an action inspiring because it’s awesome, or finding an action inspiring because the person who did it is disabled/autistic/whatever else. If you think it’s awesome simply because it’s awesome, then yay! If you think it’s awesome because I’m autistic (and I did not at all get the impression that you do, I’m just saying this as an example), then not at all yay.

      That said, thank you! It’s really nice to get positive feedback. I just wish they had listened.

  4. I checked out the latest copy of the NIB. As I am a student mental health nurse, it was fairly interesting to read. With regards to Asperger’s being a disability, as I am familiar with the condition via 2 family members, I definitely think of it as more of a gift.

  5. I think it’s great you spoke up. As noted above, now the concept of “inspiration porn” is in a brain somewhere. They can ignore it… or they might, one can hope, come around to understanding it over time. I always like an instant reaction, of course, but as they say in advertising, it takes seven impressions to make a sale. Consider what you did one of the seven and hope that others follow suit over time!

    • Indeed. Though now it’s occurred to me that all this happened on facebook, and they might just have some student running their facebook page. Which is to say – I’m not sure my words made it very far at all. Sadness.