Journal: On Being A Disabled, Chronically Ill Writer

Here’s the thing: I am proud to be a writer. I am proud to have friends and loved ones refer to me as such. The same goes with my queerness, identifying  as a femme, kinky, etc. All of the little layers of my identity feel beautiful and specifically me and I am proud to let them shine. 

Here’s the other thing: I am also a chronically ill disabled human. Internalized ableism is a struggle, y’all. It pulls at my skin and tugs on my awareness like this gnawing thing and I feel myself and my consciousness running from it or minimizing it, screening my surroundings to perceive where that vulnerable part of me can be seen and received safely. 

There is labor in being perceived, too; the labor of a diatribe I’ve had in my head since I could form full sentences and read my own medical chart that at age 10, was already as thick as Dostoyevsky’s “Crime and Punishment”. 

Often when I share about this part of who I am, what I was born as, it has not always been met with kindness, or compassion, or care. 

There’s been scrutiny, judgment, and vitriolic phrases like, 

“You just use your illness as an excuse not to work.” , 

“You LOOK healthy though and you seem fine?” 

“I don’t want to date someone I’m going to have to take care of.” 

“If you can go out and do ____ then you aren’t as sick as you seem…” 

And on and on and on. Like my queerness and my kinky side and my femme side, my disabled body struggles often with being locked into a system that isn’t built for it to thrive, receive understanding, or feel truly safe and seen to just exist. And I admit, after decades of that lambasting that is also backed by the systems of capitalism that cater to visibly healthy bodies and represent unhealthy ones as less than or pitiful or burdensome, I still to this day want to run and hide from this part of myself. 

It affects so much too, not just my interpersonal relationships, my family, my output, my input, my finances, my mental health…it also has reverb with my writing, which unlike a lot of things in my life is a skill I’ve adapted over years that makes me feel “normal”, positively perceived, and championed. 

Here is the other thing: Normal hasn’t ever existed. Normal is a construct to assimilate, enmesh the parts of ourselves that shine and are indistinguishable from anyone else. Normal is a word to diminish and shrink the things that are meant to break glass ceilings, inspire, and ascend our humanity into that other realm where I see you and you see me and the mirrored gaze we have on another is poignant and celestial. 

I do try not to run. I do try to stand in front of folks with my posture straight and my shoulders pointed out and the silken vulnerability of my multitudes present and ready to be perceived. Like everything else, the realism of that and the gravitas of having the will and bravery to do so comes in peaks and valleys, blips on a screen that sometimes flatline. 

Much of this is dependent on the communities I center myself in, the type of people I surround myself with who are trauma informed and empathic and have struggled through their own quicksands and look upon others with open hearts and minds. These are rare things. Similar to the other parts of my identity, my disability has often become a filtration system to process and seek that cocktail of humanity and disregard and shred spaces and individuals who add to the shame and fear and judgment and ableism the systems in place in society give voice to. 

I am working on this, always. I am trying to give myself softness and care and grace, I am letting myself cry when I feel othered or judged and allowing that feeling to settle and pass so the next feeling can come after. I am here sharing my craft and my voice so others feel less alone and alienated in their own otherness. I am abnormally rad. I am whole despite being pieced together differently. 

I want to keep sharing these things, too. The soft parts of me, the underbelly and the eyes in the dark treeline that crave the meadow before it where existence is joy and thriving looks like being in my body however I need to be. Our voices are future legacies, snowflakes, imprints of experiences that only one of us in a few billion has and fuck, how cool is that? 

I think mostly, I wanted to write this post to revisit when I’m feeling a bit beaten down or shaken up, and to encourage you, my dear reader, to embrace the wholeness in you and fuck the systems that tell you otherwise. This isn’t a toxic positivity post, too. I wanna make it clear that if you struggle like me you are valid as fuck, and you are allowed to feel lousy about the systems in place that repress and oppress your personhood and the beautiful multitudes you contain. Also, you’re not alone in this. I’m in there with you fighting and trying to embrace things as they are, while still telling myself the wings I have span and glisten under the same sun. I love you. You are worthy and valid. Don’t be afraid to share the parts of you that have been made to feel “less than”, too. I guarantee you as soon as you start to show them, others will gravitate and follow, feel so much less alone on their own paths, and be encouraged to share their own journey because the safe space has been made to step inside of.