Monthly Archives: July 2013

Person First

Me and my booksOne of the hard things about always talking about disabilities is that it begins to feel like that’s the only thing that’s important about me or that it’s the only thing I care about. Sometimes I worry it’s the only thing in me that anyone would find interesting.

I feel like you guys get a very skewed picture of me, like the reflection in a circus mirror, all bulbous and distorted with my nose way bigger than my face. Looking at that Kendra you’d think, “Boy, that nose is really important. She must spend a lot of time taking care of it.” But really my disability – and my interest in disabilities – is only a part of the whole.

In PT school we were taught “person first” language. It’s the concept that anyone, no matter their ability or functionality, is a person way before all the other labels are applied. In practice it means that I’m a woman with a disability. Not a disabled woman. Tricky, right? Even I’ve had trouble weeding out the language that reduces me to a statistic.

But here’s where I struggle. I’m this awkward mix of idealistic and pragmatic. I want to believe I’m a person first and everything else is just a high-priced add on I can compartmentalize, but I recognize that my injury has changed me. Invaded me. The little box that says “Disability” has leaked into the box that says “Wife” and the one that says “Sister.” The one that says “Daughter.” That one hurts.

Yet even with the smudged lines, the disability doesn’t overwhelm the other pieces of me. It is not the most important thing about my life or my experience.

I want there to be a formula, something I can plug bits of my life into that will tell me, “Yes, you’re doing it right.” But person first is not clear cut. It’s not a matter of just changing the way you think about yourself. It’s messy. It’s life. Funny how that works. And still after years of hard work and growth, I struggle to remember I’m more than my disability.

I’m a gamer. I’m a sailor. I’m a deacon and a quilter. I like fantasy and fairytales. I love to eat and hate to cook. I write among hundreds of books and it’s awesome. All of which I can do and be with or without a disability.

Person First: Just Happen to Be Disabled

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What’s Your Normal?

Dad's quiltWhat is normal? Is it the median or the average? Do we take the sum of all existence and divide by the number of lives to come up with our expectations? It’s one of the ultimate ironies that we celebrate superheroes with one hand and strive for normalcy with the other.

This is a Blog Hop. So, hoppers: What do you think? What are the ups and downs of normal? What’s normal anyway? Do you wish for it or abhor it?

With every expression of a gene, every formative experience creating a different person, normal becomes a meaningless word. Each individual has their own boundaries and parameters. That’s why I hate questions like “When are you getting better?” Or “How long do you have to use the crutch?” I’m not getting better. I will always need the crutch (and sometimes a wheelchair). This is my normal. And my normal isn’t any less than yours. It’s just different.

It goes the other way, too. Michael Phelps is probably the ideal of human physicality but I don’t expect everyone I meet on the street to swim like he does. That’s his normal. Not mine. And not yours either. Unless, of course, you’re sitting pretty on 22 Olympic gold medals, in which case I’ll shut up.

I think we ache for the status quo so much because we want to fit in, to be accepted for who we are. So much so that we’re willing to Monochrome Blockchange who we are. We’re pack animals. We have a herd mentality; we form family groups – however you want to look at it. There’s strength in numbers but also obscurity. I quilt. I work with colors and patterns. If you put too many pieces of the same color next to each other, you lose the point of patchwork. The pieces all fit together, but the pattern disappears. It’s only by contrasting and complementing the different fabrics that you see the whole.

Lonestar QuiltSo I’m going to stick with my normal and I hope y’all stick with yours. Maybe together we’ll make a nice wall hanging.

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We Can Make Him Faster, Stronger, Better

So Josh sent me this article the other day (I’ve noticed all my cool news stuff seems to come from him) and I thought I’d share. Go ahead and click, I’ll be here when you get back.

http://gizmodo.com/i-wore-a-bionic-leg-and-i-never-wanted-to-take-it-off-726536822

Isn’t that cool? It’s a bionic leg. First thing I said when I saw it is that I want one. Unfortunately it’s not really designed for my level of function. I don’t think I can provide even 20% of the power to go up stairs and curbs and stuff. And I’m not sure I have the control in my feet and ankles to really use it properly. But I was intrigued by the way it reads your intentions to give you support (so your knee doesn’t give out unexpectedly) and flexibility (so you can continue to walk and live even while your strength is impaired).

Back in rehab I had these knee-foot-orthotics called a UTX that kept my knee braced while my weight was on it and bent at the knee when I was ready to swing my leg forward. The idea was amazing, especially at the time, and after a lot of practice, the execution was pretty good. Those also “read” your intention from ankle movement. The Bionic Leg seems like the next step up, providing not only bracing but leveled assistance. I can’t wait to see these used in therapy.

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Progress Report: The Writing Process

Remember progress reports? Mine always said: “Kendra excels at spelling but could really use some work on her times tables.” Unfortunately, this is as true now as it was when I was twelve. And just like those recurrent times tables, sometimes the writing feels like I’m running the same track over and over again, wearing down the soles of my shoes. But apparently, readers/followers/anyone-else-who’s-listening like to hear about The Process. So I’m going to indulge myself and y’all a bit and give you an update on my writing process.

I’ve been working on my young adult fantasy novel, By Wingéd Chair, in its various stages for about three years now. It was the fourth book I wrote, it’s the second book in the Valeria series, and it’s the third book I’ve tried to sell.  It’s been written, revised, pitched, rejected, revised, pitched, rejected, and revised some more. My last rejection was particularly positive, telling me I’m finally starting the story in the right place, my character is well-balanced and interesting, and I’ve locked down my voice. So now I just need to find the right agent and the right editor for this project. Unfortunately, that’s a big “just”.

So this week, I will be polishing my synopsis and query letter. I already have a growing list of agents to try for my next wave of submissions. And if I exhaust those prospects, I have a list of small press publishers I think would be a good fit for my book.

And while By Wingéd Chair is out on submission I’ll be working on the fourth book in the series, A Shroud For My Bride (Skin Deep is broken and is going on a back burner until I have time to fix it). I also have a couple short stories that go along with both books in the works. Those will go out on submission as soon as they’re polished.

It’s funny how rejections lead to a flurry of activity. The next couple weeks are going to be pretty busy with revisions, submissions, and heavy edits. Not really my favorite part of the writing process, but every step moves me forward.

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