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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