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By now most of the internet knows that blogger Kelle Hampton caught some major flack for posting a full frontal of her daughter, Nella on instagram. If you don’t know about it yet, here’s an article from Today. While I personally think a full frontal of a child, any child, crosses the line, I do think the photo has been taken out of context because the main subject in Hampton’s photo was her belly. Nella was in the background, in the tub, eating ice cream. I just want you to remember that part because I think that’s only fair.

 I read some of the comments from Get Off My Internets about this posting, and about people’s opinion s of Hampton and I came away feeling this weird mix of feeling sorry for her – some of those people were spitting pure bile! – and being concerned about people’s perceptions of Down syndrome.

 You see, Hampton’s daughter Nella doesn’t have medical issues. She is, moreover, a perfectly beautiful child who is decked out daily in trippity-hip kid’s clothing and funky shoes and engages in activities crafted by her mother that makes most all other mothers look like slugs drenched in mind-waste that is Sesame Street. Okay, I”m just talking about myself here, but still.

 So, anyway, people look at Nella and think she’s representative of what Down syndrome looks like in a child, and they think, “Hey! pretty great! Kids with Down syndrome are just the same as kids without, only they come with “almond eyes” and someone will come over the house and play blocks with my “little”!“. Then others seem to be accusing Hampton of glow-washing and sprinkle-painting Down syndrome so that it will “look better” and be something that others will want, too.

 My personal opinion is that I do think that for the most part, Hampton speaks her truth regarding Down syndrome and how that extra chromosome makes itself known with her daughter.

 The thing is, that truth does not look the same for everyone.

 Some people – like Kelle Hampton – have a child with very few delays. Others have a child with a lot. And with medical issues to boot. I”m talking respirators, feeding tubes here; big-time things that change your whole life.

 I don’t think the object in this should be to make Down syndrome anything other than it actually is: a simple syndrome that presents itself in an incredibly wide variety of ways. But what those comments – the hundreds if not thousands of comments that were flowing around GOMI in response to Hampton’s posting the nude photo of Nella – told me was that there is a skewed perception of Down syndrome out there. That it’s either something really great or it’s something that is just beyond awful.

 The truth is that  how you feel about Down syndrome depends on your experience with it.

 If your child is constantly sick, can’t eat, can’t breathe, well I can’t see you loving that extra chromosome that makes life harder for your kid. The “more alike than different” campaign is useful in getting people to see people with Down syndrome as one of the fold. Kelle Hampton and her portrayal of her daughter take it a step further – and I’m not saying they shouldn’t, because they are only speaking their truth. The problem, like I said, is that we seem to be striving to create a culture that will either make it just fine to have Down syndrome because it’s “really not very different” or a culture that says “being different is okay.”

 I’m not striving for a culture that makes it so that “being different is okay.”

 I’m striving for a culture that says, “appreciate the fact that everyone is different.”

 You see, I don’t think it’s about seeing mainstream as a given static with douses of different peppered in, courtesy of disability or ethnic/racial representation. Rather, I think it’s about recognizing and appreciating that everyone really and truly is different. Recognizing that the object in this all is to enjoy our differences, learn from each other.

 It’s not about making the melting pot; it’s about making the beef stew, if that makes any sense.

 Does it? What are your thoughts on this?

 

Kelle Hampton is the Golden “It” Girl of blogging with the Down syndrome community. She perches firmly atop a shimmering pyramid of thousands upon thousands of blogs written by parents of kids with Down syndrome – for, as I have written, there is a startling correlation between having a kid with Ds and a desire to blog.

This is how she became the “it” girl: Kelle had written a post shortly after the birth of her daughter – a “surprise diagnosis” – and basically had everyone in the whole wide world, even myself, crying over it. We were passing the tissues and loving her, and then it seemed that she turned to….tea parties. An awful lot of them. And endless large glossy photos of her well groomed, well dressed children, her laughing self and her gleaming house. I don’t care if she’s said her laundry isn’t done or her place is a mess: her place is a messy place like the Octomom has a “few” kids.

And so. She had rocketed to success through her birth story post, the Ds community was on its knees in front of her, NDSS had her blog as a first point of reference for new parents, she was set as a figurehead for the Ds community… and I felt a bubbling resentment that besides an occasional token shout-out to Down syndrome, her blog was purely about the blog’s title, “Enjoying the Small Things.” Fair enough in most cases, but I was judging her on the basis of the fact that she had been lifted high by the Down syndrome Community and I didn’t feel she was paying it back. Not about making her blog be about Down syndrome – why should it? – but by trying to advocate more, by paying the love that had been showered upon her forward. Even a little.

Fast forward two years.

I am fine with her now. Kelle’s a homegirl. From a very different suburb, maybe, but she’s still there.

These are the reasons:

  1. She is a startlingly gifted writer and photographer, talent pours out of her like light does Las Vegas. She oozes the stuff. She can string up a bunch of nothing and roll it around in her barrels of prose and have it emerge like a Saint’s wisdom. Let’s give credit where it’s due: she is good.
  2. Unlike a certain somebody’s father, she does not pretend to know everything, does not spam around in relentless self promotion. Refreshing!
  3. She has come out of her shell and is talking a lot more about Down syndrome. Snippets here and there, great posts more than sometimes and things that have nothing to do with tea parties in Florida.
  4. She has raised over $200,000 for the NDSS in this year alone. That is pretty freaking amazing.
  5. Back to talent: aside from being a gifted writer and photographer, she is a creative powerhouse of energy. This bit of admiration comes with a dollop of chagrin perhaps on my part: how on earth does she do it all? I mean, the only thing she needs to add to it all is homeschooling and well, she’s thinking about doing that too, right?

So, I like her. I think that’s fortunate because she’s coming out with a book in April and is accepting pre-orders for more than 1,000 copies. It’s going to be a screaming commercial success and I’ll bet that just like most of us enjoy lots of Lady Gaga or Adele (ahem, speaking for myself anyway), we’re going to get a bit close to ‘enough’.

It’s a good thing I’m starting on a positive note.

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Update:

I just finished Kelle’s book, “Bloom” – and have reviewed it.The review is a bit long – and surprising, given the positivity of this post, perhaps. 

It can be found here.

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