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on eliki

28 feb 2024

this essay is in its first draft, i am still writing it, educating myself on disability justice, and getting different perspectives of disability from people.

first things first, i am someone who lives with a disability. i was diagnosed with spastic diplegic cerebral palsy at age ten, much later than normal (normally it’s diagnosed at birth).

for most of my life, i walked on my toes and it was extremely painful to walk flat-footed. i lacked strength, and struggled to do many basic tasks, such as opening bottles and other packaging. when other methods of treatment didn’t work, i got surgery to correct my toe-walking, and physical therapy to help develop my motor skills.

even today, i struggle with things such as coordination, balance, depth perception, hand strength, back pain, and inability to stand for long periods of time, even though most things that affect me as a direct result of my cp have been treated.

i should note that my disability is very mild. there are many people living with cerebral palsy that are not able perform daily activities, speak, or experience far more limiting affects of their cerebral palsy.

secondly, this is an opinion/philosophical essay based on my personal experiences with my own disability, as well as my observations of my family members who are also disabled. if you disagree with my takes, i welcome civil and polite discussion. comments are enabled for this reason. i especially welcome dialogue from other people with cerebral palsy. as i learn more, i may add addendums or corrections to this essay. derogatory or unproductive remarks will not be tolerated.



eliki is a nimisin coined by kala suno pi kulupu telo mun, meaning something along the lines of distress, affliction, adversity, or pain, but recently has come to refer to disabilities or conditions.

i use eliki to describe my cerebral palsy as someone who has attempted to translate my disability into toki pona without the negative connotations that come with possible core words i could use. attempting to translate it into toki pona lead to three possible words or phrases: pakala (relating to destruction, mistakes, or pain), nasa (relating to deviation from normalcy), and jaki (relating to unpleasant sensations). utala (relating to conflict or battles) is also listed as being similar by lipu Linku, my go-to toki pona dictionary, but i feel as though my disability isn’t an uphill battle. all of these words are associated with being bad in some way. for example, “pakala!“ can also be used as an interjection in toki pona, to the effect of “f**k!“ in english. the word kule (relating to color, and sometimes queerness) has also been something that has crossed my mind, but because of its idiomatic connotations relating to lgbtq+ people, i disregarded it.

while the semantic space of all these words can overlap, my disability is not something i view as inherently bad or good. it is a part of being human and the complexities that come with being human. when i’m experiencing pain or discomfort because i’ve been standing for too long, i could describe that as jaki or pakala. when i struggle to perform a task as a result of my cp, i could describe that as utala. however, the semantic baggage that comes with those words is also communicated. the concept of being disabled is not nherently good or bad. is it bad in some cases? absolutely. but should all things deviating from being perfectly abled be considered a battle, a mistake, decidedly not normal, or strange? no.



(c) 2024 noelle rubalcava

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