Grab a cup of coffee. We’re digging in deep today.
Before we start, please read this post from a mom who has a disability herself and has a child with a disability. Her writing sparked a few robust FaceBook conversations (you should totally friend me so you can be part of those), which is what passionate voices and bold writing should do because respectful conversations are a win-win.
Meriah states that “Disability does not suck. The inaccessibility of our society and the way in which our society does not value disability – this is what sucks. This is what makes it difficult.” Read more and come on back for my thoughts.
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Grab a second cup o’ joe while I tell you what I agree with here.
Yes, living in an inaccessible world most definitely does suck. Yes, I believe we should work together for social change. Yes, being on the receiving end of pity sucks. Yes, we need to appreciate a more diverse culture so each person can be valued. Yes, we need to start presuming competence instead of believing people with disabilities are a bundle of can’ts.
Meriah clearly has a passion for change and making room for everyone. I love that. We need her to keep focused on that goal.
Here’s why I had a bit of a knee jerk reaction to this post. My story is valuable as well, but you, my readers, know that I’m pretty frank about what sucks here in Disability World. I most definitely don’t write just to tell you what you want to hear (inspiration porn, cuz yeah, gross) or to tell you that my life is harder than yours. Remember, your challenges are hard because they’re yours. And yet I do write about the challenges of raising a child with a disability. Because of what I write, it sounded from Meriah’s post that, “my story is actually helping to fray those strands” of those working toward social change. In fact, from readers I’ve heard that the opposite is true.
Let’s go pie in the sky for a moment and consider what would happen if the world really was accessible and people with disabilities were fully valued. First, Hallelujah. But second, for Aidan, no matter how much you value him, he will still have seizures; no matter how many public spaces he can access in his wheelchair, he will still have health risks because of his limited mobility. That sucks and can even be scary. As one FB commenter and woman with a disability wrote, “No two disabilities are the same and I don’t think more access is the end all be all to the “suckyness” of disability.” This most certainly does not mean we don’t work toward greater accessibility, but rather clarify what that does and doesn’t mean.
Let me just call myself out here and do a little bold, passionate writing of my own. You’ve heard me call Aidan’s brain and body broken. It’s hard to write and it must be hard to read, and sure, it’s probably controversial. When Aidan’s brain puts his body in danger, I refuse to call it just different and celebrate it. If you stick around long enough on this blog you will also hear that I celebrate how Aidan is an amazing driver; he walks with assistance, he can learn; and gosh darn it he has the best giggle in all the land. I want you to hear the difference between who he is, his very essence, and how he functions, with a broken body. Aidan’s disability is just one part of him.
This is the place for a more nuanced discussion. My son’s brain and body are broken but he is so fully loved and valued in our home and community. I want to share our story, the good the bad and the ugly, so you will feel engaged and educated and ultimately invited into our world.
I agree with Meriah that the “woe is me” writing can be damaging, but only if that is where a person stays. You’ve heard my pity parties but you’ve also heard my celebrations. I believe there is a way, as another mom stated, to “emphasize the positive and still talk about the negative.”
And here is why ultimately Meriah’s post made me both cheer and cringe – a mom friend of mine who does not have a child with a disability, remarked that it can be hard to engage with people in Disability World because they may be expected to act like disabilities don’t exist or not quite know what to say. This is a friend who has said she reads blogs either because she can related to the writers or wants help relating to them, which is exactly what I want to accomplish here. That’s the worst part for me, when someone feels like conversation is shutting down or leaving them out.
Perhaps I’m naive, but I’d be shocked to find out if I had readers who just want to hear that I’m jealous of their easy lives. Here I write about my biggest pity party and honor that everyone goes through a painful mess at some point. Regardless of the specifics, can’t we do it together?
If we are working toward social change than we need to do two things. First, claim the place where we are and why it needs to be changed. So, yes, having a disability sucks. Second, we need to gather everyone together to make that change and that includes people without disabilities. How can we do that if we don’t share the truth of our stories, the very essence of our selves?
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I want you to know that I engaged Meriah in the comments section of her blog and she acknowledged the more complex part of this conversation – yes the negative should be shared and the conversation should be balanced.
Also, please do check out her Cool Cats interviews with people with disabilities. They address the challenges of disability and what people like about their disability. Very interesting.
I’ve also invited her here to the comments section. What do you think? How do you view balance and the whole celebration vs. hardships conversation. Robust respectful conversation commence…..
Team Aidan 