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?
Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.
I think you are brilliant. Seriously. These lines made me say a huge Amen! and Thank you.
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.”
Not just “thank you” as a mom to a child with Down syndrome, but as the daughter of a Mexican immigrant turned American citizen, and Aunt to 3 boys who are multi-racial. And, as a white girl with a Mexican dad who never quite “fit” into any category. Thank you!
As a retired school psych, I do have some experience with kids with Downs. The reality is, some are high functioning and pleasant. But just as with “typicsl” kids, many Downs kids are extremely stubborn, have behavior problems, have unintelligible speech, poor hygiene, etc which can lead sadly lead to rejection Painting a picture of these kids as universally sweet and docile does them as well as others, a disservice.
The wise women who started the Down syndrome board over at Baby Center picked an icon for the board that says “Just As I Am.” I love what you’ve said here, and I love that too. It is part of why I hear people in our & outside of our community use “high functioning” as a badge of honor and “low functioning” as something to be feared I feel my head explode. If we could spend less time worrying about these types of judgement and create a culture, where we as you so wonderfully put it where we “appreciate the fact that everyone is different,” our children’s lives would be better (and a secrete ingredient toward lessening the stigma of having a child with Ds, IMO.)
Great post.
And everyone is different, in so many ways. I think accepting that everyone is different is something society has been striving for for some time, which is why we have movements; to try to end racism, and sexism, and with you, ableism. You have a dream, Meriah. I will fight with you to make it real.
Wonderful post, Meriah. And you’re absolutely right – everyone is different. I’m rethinking my own thinking now, because I have been one of those to say “difference is okay.”
Also, the misperceptions of Ds on GOMI . . . yeah. I had to stop reading, and that was one of the biggest reasons.
I so love how you make me think. What a gift. Really. Appreciating that everyone is different. There it is. Now if only we can get there.
I really don’t think I would have thought about the Instagram photo in this way, unless you pointed it out. I would have thought it was a photo of Nella & left it at that. I think you’re absolutely right though, on several points, people see what they want to see, no matter who the person is, based on their experiences.
I preach to my boys all the time that everyone IS different, and that’s the amazing part of being a human being. It completely wonderful to meet different and interesting people as you go through life that make you stop and look at things in a new way.
Great post, girl. Thanks for making me stop and think about something in a new way.
Thanks for writing – your posts are always thought provoking.
I think there is a difference between “social identity” (race, disability, gender, etc) and “personal identity” (who we are as individuals).
It’s the “social identity” that places the biggest obstacles. Before Martin Luther King’s message of judging each person on their merits, there had to be people like Harriet Tubman and Frederick Douglass – whose words and works took the chains off African-Americans.
Once Downs Syndrome is de-stimatized, and our children are (metaphorically) allowed out of the basement, I think it will be a lot easier to mold a society that appreciates that everyone is different.
I think Kelle’s blog – and yours – do a great job of getting children with Downs Syndrome out of the metaphorical basements that society has been keeping them in, albeit in very different ways.
Thanks for your blog, love it – you are a very good writer.
Peace,
LBD
Couldn’t agree more. You know, I think this is an across-the-board challenge for other special needs, too. People might glance at my blog about Max and think that all kids with cerebral palsy, for example, are cognitively impaired, which is not the case. It’s just too easy for the world to take a glance and think one-size-fits-all. This is a good reminder for us to help people keep understanding the variations of abilities—and yes, to embrace those differences. I share your dream, Meriah. I love your words. Must go share this post NOW.
I had not heard about this instagram photo from hampton (probably bc i don’t follow anyone on instagram)… but i really enjoyed hearing your perspective on this. i completely agree with your philosophy and reflections! (glad I found this post thru love that max 🙂 )
I agree that one’s experience with DS colours our perception of what DS is all about. As the mother of a child with not too many significant delays, I have to say I have been pleasantly surprised at what my daughter is capable of and how bright and quirky she is. For all the time I wailed and cried and mourned, it really is not as bad as I thought it would be. Maybe that’s because of our unique circumstances, maybe it’s because I’ve grown significantly as a person and as a mother. Probably it’s a combination of the two. But regardless, I agree that as a society we need to makeallowances for different, for other, for abnormal and for disabilty. These aren’t bad words and they don’t marginalize our kids. People’s narrow thinking and perceptions create the marginalizations, as well as systems that are put into place that penalize people for actually being able to work and contribute to society (losing SSI when income is earned etc). Good post.
And with a few clicks I have unfriended KH on IG, FB and the blog. It was starting to make me feel bad about my girls delays and I do think she is VERY narcissistic. I do though love her creativity, but I can’t live my life that way. It will be interesting once the baby arrives….
You. Are. Brilliant! Great Post! I really don’t care about the nude baby picture… but your thoughts on being different! It’s so simple, we just wish everyone would get it!
I love this post!! We are all different. Thank goodness!