Awareness Days Awareness

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March 16th is 3P Deletion Syndrome Awareness Day. A year ago I would have been posting pictures of the 3P ribbon all over the internet (I can’t say rrrrr-ribbon without rolling the R like in the “Ribbon Shaming” episode of Seinfeld). But this year my perspective has shifted. I’m not saying it’s wrong to celebrate our 3P kiddos. We’re proud and we should be. I’m simply becoming more critical about what I share, where I share it, and most importantly, WHY I’m sharing.

Raising ‘awareness’ may be pointless unless there’s a specific purpose or call to action.

Many disabled adults are asking us, parents of disabled kids, to “stop raising awareness for awareness sake.” It’s being argued that this kind of passive social action is not only useless, it can cause more harm than good.

Christina Grout (@abelismistrash on Instagram) explains this issue perfectly. Check out HER THOUGHTFUL POST HERE.

Christina wrote, “I know that as parents we’re always seeking to better our disabled kid’s lives, but as it turns out, we’re sometimes doing more harm than good if we centre the wrong “awareness.” This doesn’t mean you’re being a crappy parent, or that you’re in the wrong and we’re all over here disabled and keeping score. Not at all, but it’s a way you can be impactful: stop sharing awareness for awareness sake. It doesn’t help, and often it sends a message that passive inaction and indulging the curiosity of strangers is what helps disability justice. That could not be farther from the truth.”

Bam. I hadn’t thought about it like this before.

Of course, my first reaction was indignation. I was all, “But I’m helping educate. By sharing about Avery’s genetics, I’m raising awareness so that, um, so people can, uh. Shoot. What IS my goal here?”

This message isn’t new. I just didn’t hear it until now.

I found all kinds of posts on this subject. Here’s a snippet from, “Stop Raising Awareness Already” written in 2017.

“Raising awareness about something that wasn’t known before can be a useful tactic when it’s part of a larger effort to drive social change. But to truly drive change, we have to consider the science that shows there is a more strategic, effective, and focused way to drive social change. Research suggests that not only do campaigns fall short when they focus solely on raising awareness, but sometimes they can actually end up doing more harm than good. It’s important to understand the ineffective and even harmful effects that awareness can have. When done wrong, an awareness campaign carries four specific risks: it might lead to no action; It might reach the wrong audience; it might create harm; and it could generate a backlash.”

Christina Grout says, “There’s a darker side to awareness: the Eugenics like focus on erasure and prevention of disability. Disabled people aren’t the problem: systemic ableism is.”

Here’s where I explain/defend my actions and possibly come off as a mega hypocrite.

Fourteen years as Avery’s mom and I’m still learning and shifting. Probably now more than ever. This awakening (oh god, I just wrote awakening) is the main reason for retiring my aged “Forever in Mom Genes” parenting blog and creating this new website—not ABOUT my daughter, but WITH my daughter.

Here are three ways, as a non-disabled parent of a disabled child, where I may be doing it wrong, (but I’m trying to get right):

1.) My last two posts were about creating “awareness.”

How To Support People With Epilepsy—On Purple Day And Every Day included a trigger warning which is yet another new (to me) accessibility element. It’s meant to warn readers about possibly sensitive or triggering content. Since I wrote about Avery’s dramatic and nearly fatal status epilepticus seizures, I included the TW up front. This post wasn’t shared to shock or create sympathy, but to demonstrate the dramatic impact epilepsy has on families. People know about epilepsy. However, they might not be aware of how they can support friends and family living with epilepsy. My intent was to highlight two local programs—Epilepsy Shop and The Purple Gala—where 100% of money raised helps fund programs like the summer camp Avery attends. Without donations, programs like these can’t run. THIS was the purpose, the call-to-action and the reason for my participation in this epilepsy awareness campaign.

As for my post, “Rare Disease Day—Rare Is Everywhere”, I don’t actually see a clear purpose or call to action. If I’m honest, I feel like I wrote it because I had to. As though by not talking about a day devoted to our “niche”, I was shirking a responsibility to speak and to… “educate.” I don’t know. One positive for me though was by following one of the rare disease day hashtags, I found and registered for a webinar about rare genetic diseases in Canada. I was able to listen to and learn from disabled adults, non-disabled parents of disabled kids, geneticists, and researchers.

*Several advocate groups have been using the term “acceptance” over “awareness” for some time—Disability Scoop

2.) Avery’s chromosome deletion/duplication and associated disabilities are outlined on our ABOUT page.

In my mind, this information was important to include in order to connect with other 3P and 9P families. Some may feel this level of detail is an invasion of Avery’s privacy. I’m of the opinion that her unique genetic arrangement is fascinating and part of what makes her, her. This is where I’m at now, but as I learn more, maybe my opinion will change. If you ask Avery, she’ll tell you her DNA is cool. She doesn’t understand it (who does?) and maybe when she gets older and has more awareness of her differences, she won’t want people peeking at her DNA strands.

3.) Avery is often called an inspiration.

Check my Instagram feed on any given day and you’ll find images of Avery holding her cat or skipping rope, dancing or doing yoga. People have told me they find her… inspiring. I’ve always taken it as compliment. Then I learned the term “Inspiration Porn”. The term coined in 2012 by disability rights activist Stella Young, refers to “the portrayal of people with disabilities as inspirational solely or in part on the basis of their disability.” (source)

I don’t post ‘Avery in action’ content to inspire. I mean, she might inspire people to get a pet or learn to hula hoop or try tae kwon do. She might inspire people to be kinder or more positive. And yes, parents of disabled kids might feel inspired by how active and bright her life is. She might inspire you, but sharing her with you is not attention seeking or gratuitous. It’s just, Avery.

So I didn’t share photos of the 3P ribbon today. I just couldn’t figure out my purpose or a valuable call to action.

But, I absolutely loved seeing all the ribbons and photos in the 3P Facebook group today. When Avery was diagnosed in 2009, not only had we never heard of this deletion, most doctors hadn’t either. Facebook was in its infancy and Twitter and Instagram didn’t even exist. As parents trying to learn about this rare genetic condition, we felt alone. To see this community growing and connecting and sharing is ah-mazing.

There is nothing wrong with claiming a day for our rare kids. Forming a community where we can support each another is valuable. And not because we need support to “fix” our children. They are not broken. Well, a segment of their third chromosome literally is. Hence the deletion disorder with its myriad of developmental and medical complications. And THIS is where families may require support and information. Ultimately, we want what all parents want—to give our kids everything they need to be happy.