when I was 4 years old I discovered a
door it appeared at family gatherings as
I was talking at length to my aunts and
uncles about Jupiter and her many moons
or rather it appeared after in the
aftermath when my parents would pulled
me aside and make jokes always the same
joke by the way something about eyes
glazing over which shows a profound lack
of effort on their part but I digress a
few years later I tried to open the door
because it appeared to me again during
visits from family friends and my
parents co-workers the door seemed to
want to open the knob would turn a
little when the faces of adults in my
life would have react positively but I
would soon learn that it was locked when
phrases like seeking attention or thrown
around for reasons I didn’t understand
and so my first two lessons were
imparted to me number one people don’t
like talking as much as I like listening
or the other way around
sorry people don’t like listening as
much as I like talking middle school
came and the door kept approaching
in the corners of rooms getting closer
day by day and I would see it reflected
behind me in the chrome painting on the
legs of school chairs which of course I
could only see by bending in half and
putting my head between my knees in the
middle of class and so my third lesson
was imparted to me that nobody talks
like I do nobody walks like I do nobody
sits or stands like I do nobody behaves
like I do and everyone in the world can
see it except for me but growing up I
didn’t tell anybody about these lessons
about pieces of what I thought was the
larger truth of adulthood how could I
I heard the jokes when people thought I
couldn’t I could seal the eyes of my
peers when I would rock or flirt or say
something that they but not I
Tourette’s doesn’t make a kid feel
overwhelmed when they talk it when they
think about body language attention
deficit disorder
doesn’t make a kid want to scream when
their peers tease them with no more
intention or malice than with which they
tease each other an obsessive-compulsive
disorder certainly doesn’t make it feel
as if there is a barrier between me and
even my closest friends a pane of glass
imperfect only slightly enough that I
can see it and no one else and so for 19
years I assumed I must be immature if I
cried because a kid at lunch took my
shoe for all of five minutes I was
clearly the one overreacting never mind
that bullying is bullying regardless of
duration or intention or the fact that
my well of emotions clearly so much
deeper and more intense than anyone else
I knew was indicative of something not
immaturity my fourth lesson was that I
could construct a kind of false maturity
a mask of a sort not to hide me not to
transform me into someone else a mask of
frosted glass to smooth out the edges
and blur out the parts that get me in
trouble I learned this one early on as
well although it took me a while to
finish making the mask itself by high
school I no longer rocked or mumbled I
only scream to enjoy or when no one was
around to hear me be upset I could avoid
studying the faces of passers-by at
least in ways that they could notice and
as my desire to break this barrier to
shatter the glass turn into desperation
and eventually depression I kept it
under wraps my fifth and final lesson
was that no matter what anyone tells you
labels are the key to opening the door
to surviving in this world because I
could relate to you these stories all
day I could tell them to parents to
employers to anyone but so long as they
remain nameless so long as I can’t give
you a word an all-powerful label nothing
will come of it I’ll be dismissed out of
hand because when I would have
breakdowns as a child because sometimes
the noise of a loud hallway was enough
to send me over the edge even the most
compassionate people in my life would
routinely tell me to walk it off or to
quit pretending because normal
conversation for me takes more mental
effort than chess does for anyone else
and asking me to behave in any way
resembling appropriate for public while
also asking me to count change for $100
bill is like asking anyone in this room
to drive two cars at the same time with
one hand tied behind their back so yeah
I’m gonna snap it a couple customers or
I’m gonna make more arithmetic mistakes
I’m autistic and suddenly the game
changes suddenly I have help support
there is infrastructure that
hypothetically at least will help me
keep me on my feet keep myself on my
feet but that’s the problem isn’t it
that unless I can prove that I’m
sufficiently sick unless I can give you
a synonym of deficient I’m no longer
worthy of help I’m no longer able to get
the aid that I need even though I still
have the same limits the same borders to
my behavior is it not ludicrous that
people cannot be trusted to give an
honest account of their limits is it not
last night the people who by definition
know their own experiences better than
anyone else in the world cannot be
trusted to communicate those experiences
this problem this problem it lies at the
center of how we talk about health
problems mental and physical and how we
talk about neuro divergence things like
autism and personality disorders because
so long as people cannot be trusted at
their worth to be honest about their
limits so long as people need to prove
that they are sick to be assumed healthy
until diagnosed otherwise that is a
folly and it continues to perpetuate the
systematic harm and marginalization and
if someone came to you showing no signs
of autism or personality disorder or any
other neurodivergent and they told you
that I contact it will send them into a
panic attack
ten times out of ten what right does
that give you to keep telling them to
make eye contact with you what right
does that give you to deny them that
because yeah okay they might be lying
but they risked it they risked lying
being caught lying and if you’re their
employer or in a position of authority
they risk being punished for doing so
just so they could avoid eye contact so
yeah they could be lying about their
reasons but clearly it is an important
enough issue to them that they have
taken that risk so what right do you
have to deny them their request I said
before that labels are the key to
surviving to opening the door and I
stand by that but they’re a skeleton key
a key to a creaky door that sticks to
its frame and has an open hole where the
window should be a key that only works
because the lock itself is too heavy to
hold itself together a key that has just
enough jagged edges that I’m wearing
band-aids on my fingers a key that works
only so long as we keep making excuses to not fix the door
door it appeared at family gatherings as
I was talking at length to my aunts and
uncles about Jupiter and her many moons
or rather it appeared after in the
aftermath when my parents would pulled
me aside and make jokes always the same
joke by the way something about eyes
glazing over which shows a profound lack
of effort on their part but I digress a
few years later I tried to open the door
because it appeared to me again during
visits from family friends and my
parents co-workers the door seemed to
want to open the knob would turn a
little when the faces of adults in my
life would have react positively but I
would soon learn that it was locked when
phrases like seeking attention or thrown
around for reasons I didn’t understand
and so my first two lessons were
imparted to me number one people don’t
like talking as much as I like listening
or the other way around
sorry people don’t like listening as
much as I like talking middle school
came and the door kept approaching
in the corners of rooms getting closer
day by day and I would see it reflected
behind me in the chrome painting on the
legs of school chairs which of course I
could only see by bending in half and
putting my head between my knees in the
middle of class and so my third lesson
was imparted to me that nobody talks
like I do nobody walks like I do nobody
sits or stands like I do nobody behaves
like I do and everyone in the world can
see it except for me but growing up I
didn’t tell anybody about these lessons
about pieces of what I thought was the
larger truth of adulthood how could I
I heard the jokes when people thought I
couldn’t I could seal the eyes of my
peers when I would rock or flirt or say
something that they but not I
Tourette’s doesn’t make a kid feel
overwhelmed when they talk it when they
think about body language attention
deficit disorder
doesn’t make a kid want to scream when
their peers tease them with no more
intention or malice than with which they
tease each other an obsessive-compulsive
disorder certainly doesn’t make it feel
as if there is a barrier between me and
even my closest friends a pane of glass
imperfect only slightly enough that I
can see it and no one else and so for 19
years I assumed I must be immature if I
cried because a kid at lunch took my
shoe for all of five minutes I was
clearly the one overreacting never mind
that bullying is bullying regardless of
duration or intention or the fact that
my well of emotions clearly so much
deeper and more intense than anyone else
I knew was indicative of something not
immaturity my fourth lesson was that I
could construct a kind of false maturity
a mask of a sort not to hide me not to
transform me into someone else a mask of
frosted glass to smooth out the edges
and blur out the parts that get me in
trouble I learned this one early on as
well although it took me a while to
finish making the mask itself by high
school I no longer rocked or mumbled I
only scream to enjoy or when no one was
around to hear me be upset I could avoid
studying the faces of passers-by at
least in ways that they could notice and
as my desire to break this barrier to
shatter the glass turn into desperation
and eventually depression I kept it
under wraps my fifth and final lesson
was that no matter what anyone tells you
labels are the key to opening the door
to surviving in this world because I
could relate to you these stories all
day I could tell them to parents to
employers to anyone but so long as they
remain nameless so long as I can’t give
you a word an all-powerful label nothing
will come of it I’ll be dismissed out of
hand because when I would have
breakdowns as a child because sometimes
the noise of a loud hallway was enough
to send me over the edge even the most
compassionate people in my life would
routinely tell me to walk it off or to
quit pretending because normal
conversation for me takes more mental
effort than chess does for anyone else
and asking me to behave in any way
resembling appropriate for public while
also asking me to count change for $100
bill is like asking anyone in this room
to drive two cars at the same time with
one hand tied behind their back so yeah
I’m gonna snap it a couple customers or
I’m gonna make more arithmetic mistakes
I’m autistic and suddenly the game
changes suddenly I have help support
there is infrastructure that
hypothetically at least will help me
keep me on my feet keep myself on my
feet but that’s the problem isn’t it
that unless I can prove that I’m
sufficiently sick unless I can give you
a synonym of deficient I’m no longer
worthy of help I’m no longer able to get
the aid that I need even though I still
have the same limits the same borders to
my behavior is it not ludicrous that
people cannot be trusted to give an
honest account of their limits is it not
last night the people who by definition
know their own experiences better than
anyone else in the world cannot be
trusted to communicate those experiences
this problem this problem it lies at the
center of how we talk about health
problems mental and physical and how we
talk about neuro divergence things like
autism and personality disorders because
so long as people cannot be trusted at
their worth to be honest about their
limits so long as people need to prove
that they are sick to be assumed healthy
until diagnosed otherwise that is a
folly and it continues to perpetuate the
systematic harm and marginalization and
if someone came to you showing no signs
of autism or personality disorder or any
other neurodivergent and they told you
that I contact it will send them into a
panic attack
ten times out of ten what right does
that give you to keep telling them to
make eye contact with you what right
does that give you to deny them that
because yeah okay they might be lying
but they risked it they risked lying
being caught lying and if you’re their
employer or in a position of authority
they risk being punished for doing so
just so they could avoid eye contact so
yeah they could be lying about their
reasons but clearly it is an important
enough issue to them that they have
taken that risk so what right do you
have to deny them their request I said
before that labels are the key to
surviving to opening the door and I
stand by that but they’re a skeleton key
a key to a creaky door that sticks to
its frame and has an open hole where the
window should be a key that only works
because the lock itself is too heavy to
hold itself together a key that has just
enough jagged edges that I’m wearing
band-aids on my fingers a key that works
only so long as we keep making excuses to not fix the door
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