I Can’t Talk About This

(Mis) Interpretations of Disabilities, Illness and Disease

Most of my favourite books are about characters who suffer. Sometimes from the realms of Social Pariah-ness, but more often than not, mental illness, disability or disease. From the X-Men, to Bruno Victor Benucci III, to Hazel Grace or more recently, The Peanut Butter Falcon.

Disabilities

In the first grade, the friends I found quickly all had an aide of somekind for their bodies. Sometimes it was crutches, maybe a helmet, or a chair of some sort, but what they lacked in quick mobility, they made up for in imagination. And on the playground imagination was the currency I traded in the most.

Then things started to change.

It started when I was escorting one of my friends to the teachers office. He had a pretty violent attack on himself, where the world closed in around him. We were holding hands walking and he wretched his hand away from mine. His arms began flailing, hitting me in the process. ( Not purposefully, just self- protectively.) His cries resounded throughout the school. Classroom doors opened, teachers pulled me away from him and started asking me immediately what I had done. He was picked up and “removed.” We were separated and I cried inconsolably.

Things were not the same after that. He had to move classrooms, and eventually schools. I allowed the peer pressure of becoming “cool” to change my imagination currency. The rainbow-licisious-ness that I once craved in friendships quickly became bars of fear. An “ us,” and “ them” reproach filled the crevits of my mind.

“ They must be lacking so much.”

Dude. F*ck that and F*ck me for thinking it.

In my career I have been fortunate to work with loads of people who have all sorts of disabilities, from learning disabilities, to physical impairments. And just like the first grader on the playground, I find my heart warmed and my brain befuddled at every interaction.

But I’m not allowed to say any of this, because… this is a place of inclusivity, and in the conversation, we are just supposed to accept, without question.

But I have questions. Yeah they are probably sh*tty questions. But they are questions nonetheless.

Mental Illness

If I look into my family history, I know there is Clinical Depression, Paranoid Schizophrenia, Alcoholism, Anxiety and those are only the illnesses I know about, who have been medically treated. When I speak to anyone, especially other writers, there is a common thread. We all have demons in the closets, and cobwebs in the mind. But how many times have we been hospitalised for it? And were we or were we not hospitalized because we had the resources to be?

I could masturbate here and talk about my own struggle with mental illness, but it is quite plain, and not unlike most people’s. ( Dark thoughts, suicide attempts, worried parents, full days in bed, disassociation from friends and family, panic attacks at all hours of the day, uncontrollable mood swings, nonstop crying, therapy, rinse and repeat.)

The point of this, is that it is in my mind. And my mind is part of my body, and the relationship I have with my body. Sure, I have been shamed because people misinterpreted depression as laziness. Or depression as me being an asshole.

But anyone that has gone through anything like this can relate that there is nothing so hurtful anyone can say to you, that you haven’t already said to yourself. But here is my question… I have a fairly westernised version of what some might deem a “normal” or “privileged” life… So, what about everyone else?

What about those people who aren’t at liberty to discuss the demons that corrupt their minds in their culture? What about those who suffer from mental illness, but don’t possess an outlet to discuss it? What if they don’t have the words… that just isn’t how their mind or body works?

As a basic white chick, of course I want to know what I can be doing to help bring some of this to light. It’s the white saviour Bull Sh*t we see everywhere. Although that doesn’t change the fact that there are people out there that have complicated relationships with their mind and body, but do not have the space or access to begin the discourse of how to figure all of this out.

Disease

Again, as a small child I had an intimate relationship with one of my favorite people in the world. Her name is Meghan. She is my cousin. She was diagnosed the HIV Aids virus when she was an toddler. A toddler. When her parents found out they were of course devastated. My uncle called my mother and said this;

If you don’t want our kids to play together, we would understand. A lot of people have disconnected themselves from us, at the sake of infecting their kids, so… we will understand if you want to do that, as well.

As you can imagine, my mother told her brother to jag off, and the only world she would live in is one where Meghan, my brother and myself would be inseparable. And we were. Meghan broke up fights between my brother and I on the daily. But she also lived with a stigma, when it came to making new friends.

One night Meghan cut her hand at our house, when she was staying the night for a slumber party. Immediately, my mothered covered it and kindly told my brother and I to leave.

She fixed her up, good as new. But that brought me to the conclusion something was wrong. Usually if I cut myself, my mom told me “ walk it off.”

Meghan was different, but why?

I spent the whole of dinner interrogating Meghan and my mother as to the special care. My mother fumed and Meghan looked down at her plate.

She was isolated, yet again by her disease. And by me. One of the closest people to her. One of the people who was supposed to understand her most of all.

To this day, that dinner replays in mind as one of the biggest regrets of my life.

Many, many people and communities were affected due to the HIV virus during the late 80s and 90s. There are people who walk around today and carry that stigma with them. The stigma of being infected. And they live with the shame of it all.

Shame

Earlier this month, Shringi Kumari and I wrote a submission callout for Body Shame Rebellion. But as I sit here and analyse what I deem to be “Body Shame” the only things that crash into my mind are all the times I have “body shamed” others.

While I can write poetry on being plus size, or discuss how my body shame has vortexed me into bouts of severe depression, I cannot in good conscious look out into the world and call myself a true rebel rouser, when I have stood with my eyebrow turned up at those who have lost control over their bodies. When I have seen those who live with stigmas and questions of how their body will function on any given day.

I hope to someday be able to find answers to my questions, but also bring more people of diverse bodies and abilities into the conversations. I hope to learn to reduce the shame I have forced on others and on myself.

But most importantly, I hope I learn how to really build a Shame Rebellion for any Body.