i so often hear people send the message
like thank god that's not me when they
see someone with a disability or like
thank god that's not me or my kid
and that's sending the message that
disability is equal to
someone who is less than or broken or
incomplete and that's not the case
i have cerebral palsy it affects me
pretty much from
the hips down and also just like fine
motor control and things like that so i
have tourette syndrome
which is a neurological disorder which
means i do movements and noises that i
can't control
i have cerebral palsy as well
left hemiparesis and nystagmus which
means that
my whole left side is weaker than my
right
i have a very aggressive form of lupus
and i have
a blood clotting disorder associated
with my lupus
and four years ago i had a clot in my
foot
and then this happened in over eight
months and 11 surgeries
this was the end
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i love having tourette's
i love that i'm four foot seven i love
my obsessive compulsive disorder
and i think that's the case that many of
us have embraced our disabilities
i've had my disability since i was born
and it's a part of me my brain
is quick and witty and wildly
inappropriate
and it also has tourette's and at some
point i decided not to just
love parts of my brain
a lot of times i see kids staring at me
that's okay with me i welcome it kids
are curious
but what i struggle with is when a
parent shushes them or quickly pulls
them in the other direction
when a child is hustled away from a
person or hushed
it stigmatizes even just asking the
question because kids then
associate disability with feeling
ashamed and if they've never seen
anything like this before
they're gonna look and if they have
questions let them ask there's nothing
wrong with that
so instead i hope that parents say
things like how cool that we all
move differently and walk differently
and talk differently more than just like
normalizing disability but
celebrating it we
date people with disabilities date and
not always
other people with disabilities just
because i have a disability doesn't mean
i have to be paired with somebody with a
disability
direct message to everyone in my life
but if you're going to set me up on a
blind date please have more criteria
then
this guy also has a disability
not every single person with a
disability is in a wheelchair
i am not in a wheelchair i've never been
in a wheelchair
if one more person calls me an
inspiration after just meeting me
i'm gonna burn your house down we aren't
inherently inspirational or brave
because we are disabled which is kind of
the idea that people
think about when they say that it's okay
to call me an inspiration once you know
me or know something about me
but genetics does not make me an
inspiration
let me earn that work there are people
who are actually doing amazing brave
things out there whether they have a
disability or not
but it comes across to a disabled person
as
wow i'm so happy that i'm not in your
shoes
i get a lot of strangers trying to help
me
up the steps by grabbing my arm or my
waist
or something and that's extremely
inappropriate you can say hey do you
need some help
rather than just either forcing my chair
or
ignoring me
it took me a while to actually call
myself a person with a disability but
i'm a person first
being an amputee is secondary i'd rather
have somebody say i'm
a person with a disability rather than
being disabled because of the
whole control and ownership issue
i hear differently abled oh
the word is disability i used to call
myself like differently abled and some
people didn't like that and i'm just
like but i am different and they're like
no you're not and it took me a while to
actually see
that i was using very able-bodied
terms it should be a descriptor just
like i'm right-handed
i have a disability
when we're talking about disabilities i
hear the word that we want to be
accommodating which is great
or we're working on tolerance nobody
wants to just be tolerated like i
tolerated
those three years my sister was learning
to play the trombone i tolerate going to
the dentist
none of these things are things i like
they're things i tolerate because i know
that i have to deal with
so there's such an important step in
communities between opening the door
to somebody with a disability and like
embracing them
and building a community with them in
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mind
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