If there is any positive about my severe spine pain, it’s that I’ve been able to learn more about how it’s like for the main characters in “The Story,” John and Trishna, to go about their lives. They both have physical disabilities, as do I, but different than mine – and still, I can empathize with them far more than had I never been disabled. Could I have written their characters respectfully without having become disabled?
Spoilers?: Minor [disability affects everything]
Yes, but my disability has taught me the nuance of their disabilities.
During Pride Month, people were open about talking about topics of gender and sexuality, as they were before and after, and I’ve wondered how that tied into John and Trishna. Sexuality, as it relates with people living with disabilities, seems to be considered taboo because the very life of disabled people seems taboo. I feel like a target using my crutches. I feel like I am a target for physical violence or verbal harassment ranging from toxic positivity to worse, so I do what I can to hide my disability. Over the past two months especially, I have noticed a significant decrease in my overall physicality, and only recently have I experienced an increase in spine pain to match. With that decrease, I have lost my perception of myself as a sexual person. Interests and desires are still there, but, the entirety of all that has faded along with my ambitions for ever hiking or doing physical sports or engaging in physical activities have faded.
Maybe, through some luck of the American Healthcare System, I can do some things.
Trishna cannot. She was born with a spine condition that, similarly to me, prevents her from anything outside of basic mobility. She is an ambulatory wheelchair user. She can stand and walk short distances with mobility aids. Because of a lifetime of medical diagnoses and treatment, she doesn’t live in the sort of isolated mystery I live within, where I feel like there is no treatment and no help from doctors, but I can still relate my feelings with hers. It might be worse for me because I had many parts of my identity taken away from me. I cannot row to the degree I once did, twice daily? She had never been able to do any of that, so, I don’t know. Is that better to have never had the experience and want to, compared to having experienced it and wanting to again?
I feel this ties in with gender in this way.
Throughout my entire life, I had noticed a separation between my mind and body that might be different than others. I see my mind as a driver that controls a vehicle – my body. The driver is an asexual, genderless being that exists only to work on projects and do things. The vehicle, the body, is what performs those actions. My body is severely disabled. I cannot do many “normal” tasks. It would be unfair for me to enter into a romantic relationship with anyone because I cannot perform any of those duties, just as I cannot perform any duties to be a productive member of society. I am probably considered lazy, useless, and not worthwhile. At least by doctors, if not the wider population.
There is no attempt at normalizing my experiences by anyone.
Living with a disability is extremely difficult. Every moment of every day is spent navigating that broken body through a world not designed for it. No doctor has given me a disability placard to make my life easier. For Trishna, she has it easier, but she and John still have it hard. I don’t know if I was fated to become disabled to write “The Story,” but it hurts so much for me to do so much, and if these characters were already disabled years before I became disabled, it is only fair to dive into my own experiences in order to share. Does that mean that Trishna and John are more like me than if I had not become disabled? I do think of them as independent entities that maybe reside within my head, or maybe exist in an alternate reality, but our sorts of mutual influences have been basically “they help me write their story.” If I work toward that goal, my life is easier; if not, it’s not – but it’s not a guarantee.
I feel like Trishna and John feel betrayed by societal gender norms.
Trishna cannot perform all of the roles traditionally assigned to women, and John has a physical disability affecting his right arm that prevents him from performing roles traditionally assigned to men. They both respect each other and do not judge each other’s inability or disability. In this relationship dynamic, the only assigned role is based on ability, and it seems unclear to me whether they ever move out of Trishna’s family’s house to be fully independent. They might, but, it is extremely difficult for me to do much of anything on my own. I can’t go to the mailbox casually, get groceries whenever, or do many of the things I was able to do before I became disabled.
Most of those “abled” tasks may be impossible for me, forever.
I will say that there is a deep emotional sadness with that when I think about it too much. Instead, if I can focus those emotions into the writing, to say, yes, this is unfortunate to me that this has happened, and shameful to the 20+ doctors I’ve seen that have not opened their hearts to me at all, but I can use this energy to serve Trishna and John in ways to tell their story. Our stories, as disabled people, living in a world that has no respect for people living with disabilities. We are “inspirational.” Why is it inspirational that I have to navigate through a world that isn’t designed for me?
These frustrations might not have made it into “The Story” before…
|Sources: The Story’s Imaginarium.|
|Inspirations: My life.|
|Related: Essays building “The Story.”|
|Written On: 2021 July 08 [11:12pm to 11:40pm]|
|Last Edited: 2021 July 08 [First draft; final draft for the Internet.]|