Please try to understand….

“Kristine, you were in my dream last night! And it was the craziest thing, you’ll never guess…..”

I silently finish their sentence, “You were walking!” But maybe just this once, it’ll be anything else..?

“…You were walking!”

As predictable as the sunrise. I can’t tell you how many times I’ve had this conversation.

I know people can’t really control what they dream about. But why does everyone seem to have these Kristine walking dreams? And does it surprise people that I never have that dream? That everyone has it but me? I have frequent anxiety dreams about my chair breaking down. But unless the chair plays a key role in the dream, I’m not actually aware of whether or not it’s there. I assume it is, because why wouldn’t it be? (I also assume my elbows and all ten toes are there, although I never stop to check.) Just like in real life, if the focus of my dream is interacting with the people and things around me, I’m not paying much attention to how I’m getting around. Who puts that much conscious thought into how their body is moving through space?

A well-meaning man came up to me at church this weekend, put his hand on my shoulder, and asked, “When are you getting out of that wheelchair?”

I was taken aback. “Not any time soon….” I sputtered.

“Well we sure would like to see you get out of it.”

Speechless. I was completely speechless. (Also–who was this “we”??) My instinct from childhood was to smile and pretend that was a kind, thoughtful thing to say. But I’m done with rewarding people’s ignorance, so I didn’t do that. My worn-out-teacher-in-May instinct was to snark and snap and tell him exactly what I thought. But I don’t want to be rude to a well-meaning old man at church, so I didn’t do that either. Instead I just looked confused and didn’t say anything. Eventually he walked away.

(If I’d let the snappy voice talk, it would have said, “Are you wishing me dead?? Because I’m not leaving this chair until I die. And I have a lot more living I’d like to do first. Leave me alone.”)

And one more story…

A couple months ago, I might have had a minor emotional meltdown at church… It was the same weekend that I wrote this post, so there’s a kinda-sorta idea of what was going on in my head at the time. Then the third hour lesson just hit all my buttons, and once I started crying, the floodgates were open and I couldn’t stop. I pretty much bawled my eyes out for 45 solid minutes in a room full of women. And I’m not a cute crier, so by the time the class ended, I was a red, puffy, snotty mess, thanking the heavens for waterproof mascara.

That day again confirmed my suspicions that I have a prickly, defensive, off-putting aura, because as I sat there after church, sniffling and trying to get it together, the room of ladies all filed out without saying a word to me. Nobody asked me if I was ok. Nobody offered to listen if I wanted to talk. No hugs or pats on the back. Nada. (Not the first time this has happened to me. There are some people who can cry, and the whole world falls over themselves to offer comfort and love. But for some reason, when I cry, people tend to back away and just give me space. Whether or not I want it.)

Except for one person. When the room was nearly empty, one very nice, older lady came and sat next to me. For a while she just sat there with that “I want to say something, but I don’t know what to say” look on her face. (We’ve all been there.) That was fine–very much appreciated, actually. Then she started talking, and stumbled through some comment like, “I just wish you didn’t have to be in that chair…” I don’t remember her exact words, but it was something like that. To her credit, she immediately recognized how awkward her comment was, apologized for not knowing what to say, patted me on the back, and went on her way. I didn’t even resent her weird comment, because hey, at least she tried. I appreciated one person caring enough to try.

It was revealing, though. Is that why people back away when they see me being emotional? Do they just assume I’m crying about being in a wheelchair? And they don’t know how to deal with that, so they’d rather not? That’s such a weird thing to assume! I was upset about a lot of different things that weekend, but none of them were related to my disability. As if I were a one-dimensional person, and that was the only thing I thought about?

Can we all please accept that Kristine uses a wheelchair, and just be ok with it? Stop trying to wish it away. If I want to wish it away myself, I can–I’ve earned that right. I usually don’t, though. There are so many bigger and better things to spend my wishes on. But nobody else gets to make that wish. It’s everyone else’s job to just love and accept me for who I am. I’m sorry that’s apparently so hard to do, but keep trying. If I can learn to be ok with me, then you can too.

Here, I’ll even help you get started. Think of something you like about me. Anything at all. You’re here, reading my blog, so I’m going to assume there’s at least one thing you find mildly likable about me…. Whatever that thing is, if I weren’t disabled, that thing wouldn’t be the same. I’d be an entirely different person. My disability has influenced every single experience, every relationship, every opportunity, every challenge, every everything, since the day I was born. Directly or indirectly, it’s woven into the fabric of everything that I am. And I don’t want to be someone else. I have my flaws and my “opportunities for growth,” but that’s ok. I’m good with me.

I’m really tired, though, of having to work so hard to help other people be good with me. Yes, I know you grew up in an ableist world, not even aware that ableist was a word, and my disability makes you more uncomfortable than you’re willing to admit. I get it, but that’s not my fault. It’s not my job to take your hand and be your disability acceptance coach. I’m busy living my own life, which both does and doesn’t revolve around my disability. If you want to be part of my life, you need to be ok with that. All of it. You need to be ok with talking about disability, and with talking about things other than my disability. One without the other is weird.

Ask questions. I have answers, stories, and opinions, and I’ll probably tell them to you. But don’t project your feelings and assumptions onto me. Nobody benefits from that.

10 thoughts on “Please try to understand….”

  1. Kristine, my whole working career was working with kids with disabilities. This is the best thing I’ve read explaining putting the person before the disability. Thanks for your honesty and putting yourself out there with heart and candor.

  2. You are a fabulous writer, brilliant, hilarious, loving, kind, and an overall wonderful human being. And that’s just a short list of all of the things I love about you. I so wish you could speak from the heart like to this to everyone you come across. It would be a better world. But I understand society’s restraints and expectations prevent that. This could be mandatory reading for your church though.

  3. I love you for many reasons. If I had to name just one, I couldn’t do it. So here goes a try… I love that you are selfless. If one of your students or friends needs you emotionally, financially, or academically, you will be there. I love that you have such an incredibly sharp wit and sense of humor. I love that even though I am almost 30 years your elder, you are by far the wiser of the two of us. You have a natural voice of reason, and you have talked me “off the ledge” more than once. I love that you are forgiving because I know I have said some things I shouldn’t have. I love that you have such a fun wardrobe/ shoes and perfect makeup and hair. I love that you will sing in public with me! I love that you will try almost anything once. I love that you never rush to judgement, unlike myself, and you form your responses thoughtfully before you speak. Please continue to teach me and educate me.

  4. Well, I did dream that we both got transferred to different schools, and we were both crushed, but not that you walked. Maybe that one comes later? Just kidding, or not…I can’t control it! 😉 All kidding aside, I love you for all the crazy stuff we talk about daily, period. Also, where would I be without my work wife? 🙂

  5. I really don’t know where to start. I love everything about you. You’re so easy to think with. You have a clarity that is rare, and you exude love and acceptance. Years ago, when I first met you, I wore a skirt that your mom had too. Although I initially didn’t like the idea that I was really closer to your mom’s age than yours, I was complimented because your mom must be someone incredible to have raised amazing you. I know, it’s dumb, just a skirt, but when I got rid of it because it didn’t fit very well, I didn’t want to let it go.

    The other day Emilia was upset because her friends didn’t come to her rescue in the way they do for other of her friends. I pointed out that she is more self-contained and seems stronger than other kids. I wasn’t just trying to make her feel better. It’s true, and it’s true about you too. I’m not saying that your analysis is incorrect, but maybe more complex. You’re not prickly, you’re brilliant, and some might feel inadequate to console you.

    One last thing, I’ve never considered your walking, but I used to really love houses that sat up a set of stairs. They look pretty and give a sense of privacy. But since I met you, they have lost their appeal. I want a house that is on ground level so you can come over and hang out.

  6. One thing I love about you is how sensically nonsensical you are. I have found a lot of meaning in our many meaningless conversations and those have been some of my most memorable moments in my teaching career.
    And your favorite Will Ferrell movie is “Stranger Than Fiction”. That’s badass.

  7. I REALLY never intended this to turn into “tell me what you love about me!” That DEFINITELY wasn’t the plan…. But I sure do love all of you. And thank you for the abundance of warm fuzzies!! <3 <3 <3

  8. About the old man at church–the one and only appropriate response is (excuse the language, it’s totally warranted here), “What in the ACTUAL fuck?” You could try that next time. Just sayin.

    I sat in relief society and bawled my eyes out one time in Portland too, in that silly little singles ward. No one said anything. No one looked at me. (You were ether not there or sitting in the back and didn’t see me, or I’m sure we would have commiserated.) It was one of the most profoundly lonely moments of my life. Humans are dumb and emotions are big and I can only imagine it’s hard being on such an elevated plane of emotional intelligence and compassion and be surrounded by the rest of selfish, shortsighted humanity. You make the world better everywhere you go. I love this blog and all the insight it brings me. Please keep writing, always.

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