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.

 

 

 

 

Published by

jcnsy

WRITER | FEMINIST | LGBTQIA+ | CHRONICALLY ILL | STUDENT

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