It’s Not All Rainbows and Unicorns

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…..

7 thoughts on “It’s Not All Rainbows and Unicorns

  1. The word “suck” is really overused in contemporary writing; it is demeaning (to the person/or condition/or state of being one is referring to…a living/breathing human being). It is also demeaning to the reader. You are such an intensely intelligent woman who has a great love for the written word and English language–why stoop to slang?
    I just turn off when I read that word.

    Your writing, your child, the world of disability you are so intelligently writing about deserves better.

  2. Shivaun – I agree with the over used part and I know I’ve been guilty of that with me beating the drum that seizures suck. And sure, it’s slang. But there just are times (for me) that call for cussing and I’m sure not going to write something stronger than that. I want grit and ugly and pain to be on the edges or even center when necessary. Sounds like I need to do a writing exercise for word choice but I won’t put tidy and intelligent where I don’t feel like it belongs.

    And now let me throw it out to my readers (so I don’t have to do all the work)- Fill in the blank with some dirt. Seizures ______.

    I appreciate your feedback (especially as one of my strongest encouragers) and hope you can squint through that word to hear the bigger picture.

  3. the reason I keep coming back to your blog is I find your writing to be honest and balanced. I can’t stand the “rosy” blogs where everything about life is wonderful or the ones where everything “sucks”. It is what it is and I DO think we are making progress (too slow certainly BUT progress) I can remember when children with disabilities were hidden away–I can tell an interesting story about that from one of my earliest memories. Do we need to work on all of this? ABSOLUTELY! But let’s do it with a positive and welcoming attitude. I read too many accusatory statements and they really turn me off.

    • Robin – Thanks for this feedback. Yes, I also think it’s important to note how far we’ve come and celebrate that too. It’s good to know you’ve heard the balance in my writing.

      Heather

  4. I love your response and the fact that we’re having this conversation. I actually feel like what you are doing IS giving the balance. I actually feel like the world wants my child to be “fine” (I have a bipolar teen) and he just isn’t. It feels like her wish is that we just make everyone see our children as “fine” and I really want the acknowledgement (which you provide) that he sometimes isn’t fine. And the world will never totally accommodate that. Social interactions just aren’t always the same and the challenges he has with school and goals just are different. They are. Yes, he is beautiful, unique, creative, awesome and amazing. And his bi-polar is part of WHO HE IS. I can’t separate that part out of him. But sometimes it means that he has additional challenges than all of his peers.

    And I’m sorry to your other reader, but that DOES suck, sometimes. I can talk about the rational side of it: it limits his potential, it diminishes his friendships, it makes him harder to parent, it is very expensive to provide the support, which insurance provides little of. Those are the rational implications. But the emotional response is that it “sucks.”

    I feel this even more strongly because mental illnesses have such a stigma. Unlike many of your children, the world doesn’t see my child’s issues. He looks fine and ordinary. So I look for places where I can read, vent and celebrate his differences. If I needed a reminder of how this isn’t an issue, I would just turn to real life, where that is what is expected of him and me.

    (I also acknowledge that some people who read this blog may know me, don’t know this about me or my son. I protect his privacy and dignity above all else, so I don’t have other places to talk about this except on private blogs. I can’t even make comments on FB posts, because they show up on my general feed.)

    • Christine – Yes, mental illness is another very different discussion. That’s such a good point that you can’t separate that out like I can do with Aidan’s body function. And yes, invisible disabilities like Autism and Bipolar or PTSD comes with that extra weird sense of having to conform. And here in your comments I hear you both celebrating him and acknowledging toe challenges.

      Thanks for pointing out the rational and emotional responses – another exercise in balance. Keep talking b/c you’re absolutely right about the stigma and in order to support families we need to fully value people with mental illnesses.

      You are fabulous!

  5. And this from my Aunt Tory – Heather, you are a gift to all of us. I am so grateful that you are in my life. I love reading your blogs…I cry, laugh and most importantly I learn. Please don’t be cautious with what you write – it’s real and it is balanced.
    Love,
    Tory

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