On Writing Disability - Pushing Through

Originally Published July 2018, mildly edited

My focus these days has been on writing my manuscript, all things world-building, and all things storytelling. I’m spending a good deal of time developing systems that will allow people to include characters with disabilities in table-top RPGs (D&D, etc), and I’m reasoning through the challenges of writing a disabled protagonist in my book. It’s a challenge regardless, although I question whether it’s any more of a challenge than writing any other proper, multifaceted protagonist–it’s simply about writing a real person. She has differing capabilities, perhaps, but that makes her no less valid.

Today, I want to comment on how I’ve observed people commonly writing characters with disabilities. Specifically, I wanted to talk about the habit that people have of using their disabled characters to glorify the act of pushing through.

Fingers of pain bloomed through her skull as she continued. They dug into her nerves with a slow, agonizing drag downward. She had to hold her breath against the way her heart pounded in her chest, and as her whole body began to tremor it took all her willpower not to drop to the ground. She released her breath and held the next one, plunging back in to continue her work. The pain didn’t matter this time; it would not stop her this time.

So what is pushing through? Simply put, it’s when someone exerts themselves beyond their usual limitation to get something done. Abled and disabled characters do this all the time, but there is a marked difference in the relative frequency; almost no disabled character ever gets away with not pushing through at least once in any of their stories. Not only this, but that moment is usually the defining, inspiring climax of their existence within that story. They broke out of the limitations of their flesh. They did the thing.

They will be incapacitated for the next two weeks.

Her hands slammed against the edges of the table, and she had a sense of trying to speak before her vision blacked out. As her mind came back to reality, Ashe came gradually aware first of the pain that wracked and throbbed through her body. She then became away of the scratch of dirt against her cheek. She tried to speak, but it didn’t feel like it worked. As the phantom grip on her skull tightened again, all sight and sound turned into a ringing white nothing.

She curled into as tight a ball as possible, focusing only on breathing until it was over.

So why is having them pushing through is such a way so harmful? First of all, a realistic portrayal of people with disabilities would include extreme health consequences due to exertion. Second, this sort of representation in media of disabled people creates a social expectation in the abled population of how disabled people must exist, perform, and prove their value. Lastly, these social expectations create a catch-22 that can lead to shame and distinct harm to people with disabilities whose realities don’t make that of the media representation.

Realism and Safety

Know when you hold everything off so you can keep going and then it all just…comes on at once?

My partner just said this to me today. I thought it was fitting.

There is a popular theory used to describe the energy limitations of disabled people called Spoon Theory. You can read all about it here, but the short version is that people with disabilities (especially people with chronic illnesses) track and budget our energy reserves (spoons) from day to day. If we use more spoons than we have on a given day we will be taking spoons from the next day. The fewer spoons a Spoonie has, the sicker they will be.

So you can do the math. In these critical moments of surpassing their limits, the Spoonie is using excess spoons that they don’t have and depleting themselves for days to come. Once this great heroic action has been taken, they will have a number of minutes or hours before their body gives out. The stress on their system will make symptoms spike and pain levels increase. They will be stuck in bed, perhaps unable to walk at all, and completely non-functional for several days while everything must go into working back to baseline.

They may end up needing critical care.

While I don’t want to suggest that people with disabilities can’t do this, I also want to start seeing a more circumspect approach to the writing of it. Some people with disabilities absolutely can and will make the decision to sacrifice our health to save the day. But we are sacrificing our health.

Writers need to be aware of the personal repercussions that will happen to that character when they choose to do that and how it will shape what actions they can take going forward. The healer with a chronic illness may not choose to save one crisis case if the exertion would keep him from continuing to maintain the health of dozens. The technician in a wheelchair may not choose to force open a jammed door if it would make them unable to fix the ship’s systems during an extended blackout.

We are constantly trying to make the best decisions for our health while simultaneously weighing the urgency of our situations. When do we put something else before our health? When the baseline is so hard to maintain, a great character struggle would not be ‘can I do this’, but ‘should I do this’. Is it worth doing this, for me and the people who will have to take care of me?

Representation and Social Expectation

“No, we can’t do any of this for you,” she said as she set aside the papers. She hadn’t given them more than two seconds of a glance, and she looked up at me with rehearsed words that forbade me from arguing, “Legally, all we are expected to do is call 911 if you pass out. We can’t ask the campus faculty to take any action to aid you, that’s up to the emergency response team.”

— Director of the Disability Center at my Campus

The second major issue with this culture of pushing through is that every abled person who sees this will use it to codify their perception of disabled people in real life. People subconsciously begin to expect that disabled people will have to go above and beyond to be present in the public sphere, and they will continue to place this moral value on actions that will ultimately cause harm to these disabled people.

When it becomes morally right and “inspiring” (please stop using that word, by the way) for us to harm ourselves to exist in abled spaces, it then becomes morally wrong and disappointing for us to protect ourselves and expect abled spaces to provide for our needs. You are less inspired by the person who has to contact the meeting space about room temperature, food, and even physical assistance. It is “impressive” for us to go doggedly onward despite the constant pain. It is weak for us to ask for help.

And when it is morally wrong of us to ask for help, no one is obligated to put forth any effort to help us. We do not match the image that has been put in people’s minds, the image of the always-strong and always-positive disabled person who will choose to be in pain rather than inconvenience others. Who give everything of themselves at every moment in order to earn enough of society back to survive.

Writers need to learn to move the value off of the great sacrifice and more on the existence of their disabled characters. We don’t prove ourselves in a single moment of badass-ness (That is a word, fight me.). We don’t really work like that. We possess an inherent value and deep strength that should be visible in every aspect of our portrayal, and that portrayal should allow us to be selfish, grumpy, tired, honest, and visible.

The Definition of Shame

When what you are and what you feel you should be do not align, the result is shame.

In my senior year of college, my ethics professor gave the class a definition of shame that stuck with me to this day. It’s so simple and gets to the heart of what shame is: that we are not what we feel like we should be. Shame is feeling lesser than, broken, invalid, and dissonant. Everything of the above that I have described is seen and heard and internalized by those of us with disabilities, and it leads us to this shame.

We see how the ‘best’ of us are the ones that hurt ourselves to perform what is expected. We watch how people are inspired by us or disgusted by us, but have no natural, relational in-betweens. We internalize the messages that are being shown and codify ourselves as being weak or disappointing if we don’t match what is being coded as praiseworthy on the big screen.

But on top of this–when we perform what is expected when we do match what we are being shown, we are in pain. It makes our bodies hurt and it makes us grapple with fatigue in every moment. Mental health becomes nearly impossible to maintain in the face of constant dysfunction. It is not a sustainable system for us, and we simply simply shouldn’t have to do it.

So our choices boil down to whether to be in constant pain to be marginally accepted or whether to live true to our needs and be ignored or even reviled by society. We feel the pressure between the two points, and that’s where the dissonance happens. We do not feel like we are what we should be because society tells us we are not. Because we are not what we should be, we are failing. Because we are failing, we feel shame.

Because we feel shame, we stop living, and we start existing.

“Because I can’t do it!” she screamed, the force of the sudden emotion throwing her off balance, “I’m only–I’m only as good as what I can do for them. But I give them everything. I have given them everything and it hurts so much. It hurts. But it’s not enough, it is? It’s never enough, and the moment I get sick, I see it in their eyes. I see the disappointment. I’ve stopped being useful to them, I’ve become a burden again.”

She let herself slip back to the ground, and despite her heaving chest she found a modicum of calm. As fast as the emotion had come, it fled in the face of her exhaustion. She stared forward, mumbling her final decision: “I can’t do it. I’m not trying anymore.”

So please, start thinking about other ways to write your disabled characters’ great victories. The great sacrifice has value, but that is most of what we see. We need realism, effort, and diversity in our portrayal by storytellers. It will go a long way to closing the endless divide that makes us feel separate from and less than our own communities.