Skip to main content

HAWMC Day 24: Why I Call Myself a Crohnie

I'm going a little off script today. The official prompt is to name a mascot, and I think we all know that I would just spend another post talking about Myrtle. (Because she's pretty much my mascot already.) I've done that a lot recently, though, and what I have to say today is something new. So, strap in.

After writing my Gloria Steinem post yesterday, I've been thinking even more about the importance of names. I've also been thinking about one specific name that we in the Crohn's community often use to describe ourselves. 

Crohnie.

Honestly, when I first heard it, I wasn't crazy about it. I was not comfortable labeling myself that way. This probably had a lot to do with the fact that I was simply not comfortable with my disease and my body in general.

Also, I thought it was a little cutesy.

Eventually, though, I grew more and more okay with it. Now I think it's kind of brilliant, if still a little cutesy for my taste. Here's why. I love that I can say, "I am a Crohnie" rather than, "I have Crohn's" or, "I'm living with Crohn's." The difference might seem frivolous, but it matters. Let me try to explain why.

I went to the Scholar & Feminist Conference at the Barnard College Center for Research on Women in 2011 (the one where Alice Sheppard spoke). That year, the conference happened to focus on disability and dance. Perfect, right? Anyway, during the opening panel, there was a lot of talk about the language used in reference to disabled bodies. One of the points that came up was whether to use "disabled people" rather than "people with disabilities." The panelists were largely in agreement that "disabled people" was preferable because it implies an identity. "I am disabled" says that the disability is part of who I am, whereas, "I am a person with a disability" separates the disability from my personhood. In reality, my disability shapes who I am, and "disabled person" acknowledges that. "Person with a disability" seems to blatantly deny it. 

I feel the same way with the word crohnie. The issue with this being, of course, that if you walked up to a random person on the street and told them you were a crohnie, they would more than likely have no idea what you were talking about. Not sure what the solution is for this, other than to just keep using the word.

Comments

  1. i also like it because it's kind of old timey. Like you might tip your hat at another chronie along the street.

    and all the agency stuff too.

    ReplyDelete
  2. Hey, nice site you have here! Keep up the excellent work!

















    Disability Conference

    ReplyDelete

Post a Comment

Popular posts from this blog

Overwhelming Nuance - Dancing Crohn's Disease

Below is small segment of my Dance Studies Research Project, "Cripping Dance: Radical Representations of the Disabled Dancing Body." It's the bit I wrote about my own work, Overwhelming Nuance (excerpted below), which, as you will see, was inspired by the feelings of denial that so often accompany disease. 





Nearly four years after I was diagnosed with Crohn's, it flared massively. Lost in the idea that "my disease will not define my life", I ignored for months the signs of the looming crash. This breakdown forced me to come to terms with the reality of my disease. I suddenly understood that the idea that the mind might overcome the body just supported the willful denial of my disease. After this experience, determined to force an openness about disease in my own life, I claimed disability as part of my identity and choreographed my own "crip" coming out.

The issue with "mind over matter"

I think about this pretty constantly. Is "mind over matter" really a thing? Is it really possible to outsmart your body? If so, is this a useful tool? Or is it a harmful lie? Is it just kind of a white lie? Also, (and this is what the whole thing really boils down to for me) is the mind actually separate from the body? Are we our bodies or are we our minds? Do the two have to be mutually exclusive? Or are the mind and the body actually one and the same?

My opinion on this subject has changed drastically and regularly over the years. Early on, right after my diagnosis, I was firmly ensconced in the pro-mind-over-matter camp. Without ever thinking about an alternative, ironically. Actually, this started long before I was diagnosed. For at least a year leading up to my official diagnosis, I experienced intense health issues and paid very little real attention to them. I just kept on going as best I could, thinking these symptoms would go away eventually. This, obviously, did no…

HAWMC Day 9: Keep Calm

Today's prompt is to make your own "Keep Calm" poster. 
I thought for a while about what I wanted to put on mine. Honestly, I think it's pretty hard to do better than "Keep Calm and Carry On." Seriously. It's catchy and it's to the point. Perfect. I considered the raunchy options: Keep Calm and Keep Pooping, Keep Calm and Break Wind. I considered the needy: Keep Calm and Call Mom (I mostly really love that this one kind of rhymes.) Eventually, though I ended up with this:

That pretty much sums it up. Just do your best. I think this is all any of us, chronic disease or not, can expect out of ourselves. It's something I'm trying really hard to keep in mind. Just do your best. That's it.

Oh, and have you guessed what my favorite color is yet?

What would your "Keep Calm" poster say? Make one! Share it in the comments! I would love to see it!