The Business of Awareness

Owen had the best view at the 2014 Steps to Independence Walk.

Owen had the best view at the 2014 Steps to Independence Walk.

We kicked off the month of October celebrating with our local DS community at the Steps to Independence Walk benefitting Down Syndrome of Louisville. We raised over $2,000 this year, and on the 4th, family and friends gathered on the waterfront to participate in our very first walk! To those that contributed and participated, a big huge thank you! It was a beautiful day and a great way to kick off October which is Down Syndrome Awareness Month in the US.

It has been a crazy month for us as a family and I haven’t been as ambitious as some bloggers taking on the 31 for 21 challenge or 31 posts for DS Awareness in the month of October, but I have managed to read quite a few of them. As I have been reading my wheels have been spinning about this business of awareness.

What do we mean when we say we want to raise awareness? Because people are aware of Down syndrome. This isn’t a new thing. Down syndrome was identified in 1866 by John Langdon Down, but there are visual representations dating back to the 16th century that depict individuals with DS. Usually awareness campaigns are reserved for relatively unknown or increasing prevalent conditions. 1 in 700 births is a baby with DS. It’s been around for quite some time and hasn’t really fluctuated in incidence. Most people have known, met, or at least seen someone with DS. I’d be hard pressed to find someone who hasn’t heard of it.

Early depictions of people with Down syndrome in The Adoration of the Christ Child by Jan Joest of Kalkar.

Early depictions of people with Down syndrome in The Adoration of the Christ Child by Jan Joest of Kalkar.

Given those facts, what is our mission when we talk about awareness? I think our most challenging task is often to help the public un-know what they think they know about Down syndrome. It’s a trickier business than just spreading the word that a condition exists. Many people have misinformed, narrow, and negative views of Down syndrome. We are tasked as advocates to strip existing perceptions and to set the record straight. There has certainly been a lot of discussion about what exactly is the right way to do this. How do you get rid of negative views while still providing a complete and accurate view of life with Down syndrome?

This problem has resulted in a trend in Down syndrome awareness recently in an effort to overcorrect negative perceptions: effusive optimism. It looks something like this: Everything is great and I love my life and my kid! He is a rock star, an angel, and a super hero all rolled into one! He is the best and I wouldn’t change a thing! Down syndrome? Down right perfect!! We’re not just fine, we’re better than fine!! Keep calm it’s only an extra chromosome! We are rockin’ these designer genes! #morealikethandifferent

There is a lot to be positive about when I think about Owen and his future and I love our life right now. There is certainly a lot of room for optimism when we talk about life with Down syndrome. But sometimes it feels as if there is room for nothing else. I personally think it is problematic when I hear people with DS referred to as “angels” or “super heroes” because while it is well-meaning, I think it feels a bit dehumanizing. It implies they are something different than what they are, which is human. They are neither sub-human nor super-human. They don’t have special powers. Calling or depicting them as a different kind of creature, even a positive one, feels like robbing them of their personhood. Not to mention it’s not accurate.

I also think painting a picture of life with DS as 24/7 rainbows and unicorns makes it seem as if we are trying to hide something. As I’ve said before, this is what I thought when we first received our diagnosis and I started reading blogs. I mistrusted this perspective and thought optimism was a coping mechanism for dealing with the difficulties of life with DS. Clearly I was wrong and had my own misconceptions to overcome, but I would have much more readily accepted a story that told me a couple of hard things, but was mostly positive, which I think is what most of our stories really are. I think we need to be unafraid to present whole picture. It’s not a secret that parenting any child is a difficult task. Disclosing the difficult aspects makes our story more genuine, and when I think about a more accepting society, I don’t want one that accepts my child on “super hero” or “angel” terms. I want one that accepts him as a whole person and in all the ways that make him different.

All that said, I get why all this inspirational pep talk has been so popular, and I don’t think anyone is trying to be misleading by hiding difficult moments. I have quite a few posts highlighting the positive aspects of our lives. I’m not trying to hide something. I really do feel that way. After all, it’s not like parents of typical children are rushing to social media to document their kid’s latest tantrum. It’s a natural tendency to share the best moments. Best face forward so to speak.

Here’s the thing: You will likely never see our children like we do. That is hard for us. You may never be able to observe all the sweet moments, the smiles, the personality, the growth, the triumphs, the struggles, the health issues, and the meltdowns and be able to look at the whole picture on a balanced scale like we do. When other kids have grocery store meltdowns on the regular, they are just being kids. When our kids have them, they are kids with Down syndrome probably doing something Down syndrome-y. They are a glimpse of the nightmare that you assume Down syndrome must be. And If we show you everything, we know there is a good chance you will only zero in on the hard stuff and not see the positives as worth it. As I’ve only recently learned, you may even question whether it was a good idea or not to bring that life into this world at all. Even after I tell you all the wonderful amazing things about my child and how much he means to those that know him, you may still get caught up on the stuff you don’t understand. A facial expression that lacks muscle tone may appear vacant to you and you may not be able to get past that and see a person. A sentence you are having a hard time understanding puts you in an uncomfortable position and you shut down the interaction before things get too awkward. People are scared of what they don’t understand and want to run from things that make them feel uncomfortable.

So we try to present the things with which you can connect. We can control what we say, but we can’t control the filter through which you see it. We overemphasize all the ways our kids are great to compensate for your broken filter. We’re not trying to hide the other stuff, but we know that you won’t see it with appropriate perspective until you see the good stuff. We hope that if you can accept positive images of DS, you won’t blow the more difficult aspects out of proportion, as is often the case. We just want you to see and accept them as people.

While the effusively optimistic approach to awareness is one I understand and empathize with, I personally try to steer clear of it. I try my best to present the most realistic view of our lives. I really do want you to accept the whole picture. I don’t want to negotiate acceptance with you. I don’t really want to compensate for your filter. I want to fix the filter. I see this as a take-it-or-leave-it situation.

Of course that is easy to say right now. Owen is still small and we have had a relatively easy road thus far. Save for a short non-DS related hospital stay for pneumonia a few weeks ago, he has had relatively few health issues. If you don’t understand what he says right now, well, that’s probably because he’s a baby. As he gets older though, delays are starting to become a little more pronounced. Some of Owen’s peers look and act more like toddlers now and he is still very much a baby in most ways. Some of the babies of friends who were born at the same time or later than Owen hit milestones months ago that we’re still working on. I will write about the difficult stuff because I think it’s important, even if I know it may create undesirable responses and may even reinforce some of the negative stereotypes people have. I hope in time those perceptions will fade and those people will accept the whole package. I am also standing on the shoulders of families who have not been able to say all the positive things I’ve been able to say or had the support that I’ve had. I don’t want to disrespect the road they’ve paved by pretending there aren’t things to overcome here. Besides, it puts a lot of unnecessary pressure on us as parents. No one’s parental journey is easy. There is still a ways to go on the road to widespread acceptance and I think it requires honesty and transparency to push forward.

While thinking about the best way to go about raising “awareness” for Down syndrome, I’ve arrived at the conclusion that the way I tell my story — with me behind my screen, and you behind yours — I will only get so far. I can launch the best Down syndrome PR campaign the world has ever seen, but if you don’t really know with someone with Down syndrome, chances are your information and perceptions will still fall short of reality. And it’s probably not your fault. If you grew up like I did, you probably went to school with children that had DS, but you probably only saw them passing in the hallway on their way to a different classroom, one with the other children with special needs. Society has not exactly rolled out the red carpet for individuals with intellectual disabilities. Patti Saylor, whose son Ethan was killed by in a police confrontation in a movie theatre while waiting for his aide, was recently told “She should have known better to send him out in public.” Can you imagine blaming a mother for her son’s death simple because she let him see a movie? We have got to squelch this idea that people who have disabilities should just cloister themselves at home rather than be an inconvenience to others. This segregation has been such a big part of our culture for such a long time that you don’t even think about it. Let’s step outside of ourselves and imagine what it would be like to walk a day in someone else’s shoes and adjust our behaviors to match how we would want to be viewed and treated. An inclusive society benefits everyone.

My son will be at the movies and you should smile and say hello. Get to know him. Don’t pretend he’s not there. When Owen is older, you may see him walking down Bardstown Road. Feel free to strike up a conversation. If it is awkward, don’t worry about it. It’s way more awkward to pretend he doesn’t exist, don’t you think? Transparency and truth are always on the other side of a little awkwardness, right? Awareness campaigns are a poor substitutes for relationships. I can blog about this for the next 10 years, but unless you have a personal connection to someone with an intellectual disability, I’m not going to change your perceptions. Unless your kid shares a classroom with mine, they will carry those same perceptions into the next generation. Don’t let inconvenience and discomfort get in the way of a better world. At the end of the day, it should not be a parent’s responsibility alone to craft society’s perceptions of Down syndrome. It’s going to take a collective effort to turn the ship.

In the meantime, let’s keep the conversation going. Feel free to ask me questions. I like to talk about Owen and I like to talk about Down syndrome. I don’t like it to be the focus of who Owen is, but it is a part of him and a part of our lives and I don’t mind talking about it. I would much rather you ask me an awkward question than go around thinking something that isn’t true. Don’t worry about offending me. While I am a stickler about the R-word, I’m not overly sensitive when people ask me questions. I’ve been on a learning journey myself. In fact, feel free to ask questions in the comments below or if you’d rather remain anonymous, drop me a note. If I get enough of a response, I will compile the questions and answer them in another post.

Owen trying pancakes for the first time.

Owen trying pancakes for the first time.


One thought on “The Business of Awareness

  1. I’m sitting in your husbands office looking at the gorgeous pics of your son. John is so proud of you both it is almost tangible. He showed us both your website and graphic art page.

    Our youngest son has a dx of autism and NF1. It is heartbreaking to receive the news but you learn to dance in the rain rather than waiting for the sun.

    If you ever need to know anything about the services we are aware of in KY. Please contact me anytime. Your husband has our number!

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