we do not always look like the heroes you want us to be

I know I said I’d write a post on epilepsy awareness. But this has been pressing on me, so it is taking precedence. Firstly – after having tried to edit this for coherence, I am going to state this: This may read more like a diary entry, of scattered, unorganized thought. But. There have been a lot of things on my mind that I feel need to be expressed, and publicly. So, prepare yourself for some honesty and some disorganization in my writing!

I’ve been doing a lot of reading about disability, from a social perspective, for research purposes. But some of the points are hitting home, and hard.

A concept raised is the “supercrip” or the concept of a person with a disability or other related illness having to have some extraordinary ability to compensate for their disability. It is expressed by Ann Schmiesing, as read in Disability, Deformity, and Disease in the Grimm’s Fairy Tales:

The supercrip…represents overachieving, over-determined, self-enfreakment that distracts from the lived daily reality of most disabled people.

My first reaction was, in capital letters in my notes: “WE DO NOT ALWAYS LOOK LIKE THE HEROES YOU WANT US TO BE.”

I am no different than any one else. I get through each day with one foot in front of the other, one day at a time. I didn’t choose my reality. It doesn’t look like “overcoming” my illnesses to get my happy ending. It looks like living, despite the frustrations, the limitations, the stigmas and every other high and low that comes with being chronically ill. I do not exist to be strong or inspiring to others. I exist for myself.

But still, I don’t know.  This concept of having some sort of compensatory characteristic to make up for my illnesses makes me uneasy. I guess I feel that it’s imposed on me.  I impose it on myself, perhaps, and others (maybe others in a perceived sense…) come to expect it from me. Specifically, I question its relevance to my high standards for myself. The question is this: Do I set my standards so high because I feel the need to compensate in some way, shape or form, for being chronically ill?

Or does this need, or expectation, for myself to be the very best come from somewhere else?

The answer?

I honestly don’t know. I think it’s a thing that is pushed on a lot of us, from many different sources, both systemically and individually. I don’t want to start talking about capitalism, or the education system, or social media, or whatever… I mean. It’s all there. We all live through the experience of feeling like we aren’t enough – feeling like we have to be everything at once and above all, productive and successful in measurable means, and somehow, we are always failing. Or so we think.

It’s a toxic thing.

But. Let me stop rambling. I am thinking about a lot, and I am trying to lay bits and pieces of it down here. For your understanding, your consideration, and for my own.

I guess – the takeaway point from this, the reason I am posting it publicly, is that I want able-bodied, “healthy”, people to understand this: disabled people, or those who are chronically ill, or otherwise not able-bodied, do not exist for your inspiration. We do not have to “overcome” our health complications to be happy, or to be successful. We do not owe it to society to be successful or productive in a manner that is valuable and measurable within capitalism. We should not have to be “supercrips” to be accepted. We should not have to compensate for the circumstances of our body that are out of our control. We should not have to change ourselves to meet society’s abled-bodied standard to be accepted. Society should change to be accommodating and accessible to people of all abilities. We do not have to throw ourselves into our passions or pursuits to cope with the struggles of our lived reality.

We are enough as we are. And we do not have to be inspirational, or strong, or constantly challenge our boundaries to be acceptable; to be valid in our identity.

We are not always “okay”. We are allowed to not be okay.

I’m tired of the facade.

I am not always strong. Not in the way you think I am.

I am not inspirational.

I am always tired. I am often frustrated.

But I am always enough.

 

 

love & spoons,

jc.

 

 

 

 

I’m a research assistant!

I just returned from a meeting with one of my professors which left me beaming the whole walk home. This is because I have been approved for a position working with her as a research assistant. I am super excited and grateful for the opportunity! Basically, she will be mentoring me to write, or possibly co-write, a paper about fairy tales and media, with the goal of having it published or presenting it at a conference. There are a couple other classes I am in where we are encouraged to submit our work to journals or for conferences, so we will see what happens in the end!

Considering we are rooting the research in women & gender studies, and that I am planning on studying disability in grad school, we narrowed down my topic to be disability representation in fairy tales. She said that not a lot of work has been done on this topic, so it’s exciting that I might get to be at the forefront of academic study on the subject!

She armed me with a list of books, articles and scholars to check out for background research and to familiarize myself with what has already been done. I immediately picked up all the books from the library and am so eager to start reading that I can barely focus on all the other assignments I have due this upcoming week! But yeah, hopefully after some reading, I’ll have a better idea of what specifically I’d like to study and write about.

It’s also really wild to me that I’m only in my third year of university and I have opportunities like this! I think a large part of this is thanks to being at a relatively small university. I’m not certain something like this would have been so easy to come by were I still at U of M.

And did I mention this a paid position? That’s pretty cool too.

Honestly, I am so excited! I feel like I can’t express it enough. I’m heading down a path that I’m super passionate about and it’s so cool to be starting my journey to becoming a published academic, and to be working with a professor that has such extensive knowledge on fairy tales and is fun to work with too. I mean, her office is full of books about women & gender studies, fairy tales, and pictures of cats, so I think we will get along pretty well. She also teaches two of the classes I am in right now, so it’s nice that we are already familiar with each other.

I will definitely post some more updates once I’m a little further along on this project and kind of know where I’m headed!

I’m also writing a paper for one of her classes on the tv show Once Upon a Time (which I’ve def been obsessed with for the last few years), where I am going to do a character study of Emma Swan, and explore whether she really is a feminist figure or if she falls somewhere along the lines of conventional Disney princess/strong-independent-female-cliché. Also very excited about this!

yeah, so, as I said to my mom when this position first came to my attention: this is what dreams are made of. (hahaaha).

 

anyways, back to studying I guess!!

thanks for enduring my overly enthusiastic rambling

& all the best,

JC. ♥