2 Cent Tuesday – Down syndrome & Prom Porn

There’s been a lot of talk about news articles that feature young adults who have Down syndrome and are nominated as Prom King or Queen.  One of my favorite blogger/writers, Professor David Perry sums up the criticism of these pieces in his articles about “sweetness porn.”

I question the significance of voting kids with DS as homecoming kings and queens – yes, it makes everyone happy and helps the typical kids feel good about themselves, but tomorrow are they going to go out and advocate for reinstating respite care for struggling parents of kids with disabilities?

Cute is the low-hanging fruit. If we in the community employ it, we must do so as a tool to open the door and start the conversation, not as an end to itself. Otherwise, cute just becomes “sweetness porn.” It makes you feel good, but it doesn’t do anything – except perhaps shut out the non-cute. At best, it promotes a nice feeling of passive awareness, because it’s easy for people to be aware of something cute.

Disability scholars use the phrase “inspiration porn” to describe ways in which people with disabilities are leveraged to inspire others, losing their own agency, losing their wholeness as a complex person, and often sending messages that if you aren’t inspiring as a disabled person, you’re letting the side down. I argue that our focus on cute, sweet, and happy in the Down syndrome community does the same thing.

You might also want to read his article on “Marketing Down syndrome.

Professor Perry linked to another page that has different descriptions of “inspiration porn”:

Inspiration porn positions disability as a terrible burden, assuming that disabled people have no quality of life, but they can find some redemption in inspiring nondisabled people by doing novel, heroic, and amazing things like having jobs, getting good marks in school, or participating in society. 

Disability porn, I feel, is a way of simultaneously focusing on how incredibly tragic a certain disability is and robbing the disabled person of any agency or complex feelings about it. 

To me, inspiration porn is any story where a character must overcome the horrible tragedy of their disability, thus inspiring the able-bodied audience.

I have found that inspiration porn is, like porn-porn, about how the viewer feels — not about the disabled person depicted. 

These descriptions are some of the less inflammatory ones out there.  Other people aren’t so considerate when describing this phenomenon or blaming the people that they feel make use of it.

I’ve gone back and forth over the issue myself.  On one hand, I can totally see how some stories, especially those that create the illusion of inclusion can be harmful.  If the general public is led to believe that this is what people who have Down syndrome want – this is the level of inclusion they are looking for – why should anyone care about real acceptance?

On the other, I’m a mom first.  Reading stories where another mother says: “As I’m typing this I have tears running down my face. I still can’t believe it” is powerful stuff.   I can relate and I have a problem with anyone saying that she is doing something wrong by celebrating her experience as a mother.

Prom King and Queen

I’ve started collecting pictures and articles about young adults who have Down syndrome and the prom – it might end up in a bigger project – for now, I’ve started a Pinterest board.

This one is from last year, but to me, they don’t look particularly happy.  So who actually feels good about this picture?  What’s worse is that this year, someone made a big production out of the young man asking his girlfriend to prom.  It was videotaped and aired on the local news.  Prom-posals are all the rage this year so it wouldn’t be much of a stretch for “disability porn” folks to have something to say about this particular set of pieces.

 

Hannah and James

Then you’ve got my personal favorite story – Hannah and James.  A quick Google search (Hannah Wackernagle promposal) will get you the whole story, but it boils down to this:  Hannah’s Mom helped her fulfill a dream [she rocks!].  James Maslow didn’t just give Hannah a photo op – he spent the whole day with her and has continued to be in contact with her since their “date” [he rocks!].

The only possible problem I can see that anyone would have with this story- and I had to think long and hard to find it – is that it may set expectations too high.  If you don’t have a once in a lifetime meeting with your favorite celebrity, you’re not inspirational enough and therefore less-than.  I personally think that’s stretching it… but I can imagine somewhere someone is thinking it.

 

So where’s the balance?   Well, here’s my 2 cents:

The academic/researcher in me says this – these photos and stories, whether they are written in personal blogs, covered by the news, or shared by national organizations, AND the discussion that follows (good, bad, and ugly) is all part of our collective narrative.  As a community, we’re telling our story.  The parents who share their child’s story are celebrating.  They may have worked long and hard to foster “inclusion” and they are touched when someone makes an effort.  This is important because it says that it’s not happening organically yet.  The people who think we shouldn’t be publicizing these moments have a perspective that is valid when considering the change we want to happen.   The only way to get to that change is to discuss it.  I just wish we didn’t have to tear each other down in order to do it.  The notion that nominating people with Down syndrome, or going with them to Prom makes “typical” kids feel good about themselves is where the rubber hits the road in my opinion.  Yes, I’m sure it does.   Whether or not that’s a bad thing is the question we all have to answer for ourselves.  If that’s all that happens, maybe it’s not so great.  I tend to think though that once someone makes that kind of gesture, for whatever reason, the personality of the individual who has Down syndrome will take over.  A relationship will be formed.  It may be brief, one night, but the impact will last forever.

We never know when or where that encounter will impact someone.

I’ll close with this story from personal experience:

Twenty-some years ago I apparently said something to an acquaintance about his use of “the R-word.”  I don’t remember what I said at all but the person I said it to does.   He recently asked a mutual friend to tell me how sorry he was for what he had said.  With tears in his eyes, he explained that he finally understood when he became a parent and that my words stayed with him all this time.

If what we say, do, share, or write impacts one person – isn’t it worth it?

 

 

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Comments
2 Responses to “2 Cent Tuesday – Down syndrome & Prom Porn”
  1. Mardra says:

    Love these 2 cent Tuesdays!
    As you know – I’m working on articulating all of this too. Why is it so tricky – that’s my question.

    Like

  2. “If what we say, do, share, or write impacts one person – isn’t it worth it?” It definitely is worth it!

    Really thought-provoking post, more so because it’s from the mother of a kid with DS.

    Often, people do or say things which they genuinely think would have make a person with a disability feel good. The result may be completely different from the one intended.

    I think it’s essential for all people to be educated about various disabilities so that they empathize with them and make a genuine attempt to have real inclusion on a daily basis, not just an ‘illusion of inclusion’.

    (If I inadvertently used any insensitive word or expression in this comment or in any other, please accept my apology and do correct me.)

    Like

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