April 2nd 1966 a 6-pound baby girl is
born a parent worth fear realize their
joy it muted by the discovery that there
is something wrong with its baby
in fact there are many things wrong with
its baby first
it’s her cry that first cry soft its
weak and then it goes silent for 10
minutes no air they bring her back she
will surely have brain damage
then as her arms too short so short they
look more like slippers than arms her
hands frozen joints hitchhiker thumbs
how is she hold a toothbrush a hairbrush
take care of herself with those hands
her legs they’re bent contracted her
feet or curled in they call that club
feet she’ll never walk on those feet she
has a hole in her mouth cleft palate
she will struggle to find her voice and
spoken word and then as her ears they
are misshapen swollen teeny tiny ear
canals cauliflower ears they call that
she will become one of the heart of
hearing but if she could have live her
parents want to know a life being not
worth living the doctors respond and I
quote unfortunately yes she’s gonna live
take her to the institution she will be
too much this is a life of suffering
people will understand these carrots
there was no discussion there was no
deliberation this was not on the table
AMA against medical advice
these parents turned our backs on
medicine and they said no this child
will not live and die in the shadows of
an institution hid
if a monster an object of shamed
embarrassment this child would not
become another forgotten child in that
place where the water run skill in an
act of love and defiance
they took her home April 25th 1985 a
black baby boy is born to two young
parents seeking to find their way as
they raise their firstborn son a system
that was stressed by their
responsibilities was strained by the
worry of raising a black son in a white
world how do we communicate to our son
that has a very existence will be
considered a threat his parents wondered
how do we tell our son that his humanity
will be denied and his capabilities
questioned how do we teach our son to
love himself knowing that he will be
despised and feared simply because of
the color of his skin how do we keep our
son safe in a world and which he will
never be safe
that little girl would grow up in a
house with a lot of love and a lot of
laughter but all the love and all the
laughter wouldn’t protect her from what
it would mean to be seen in this body in
a world that celebrates symmetry
proportioned bodies and fluid movements
this world would tell her she was
helpless fragile weak deformed ugly a
mistake some would even say a sin and as
those peers sought to raise their black
son they realize that who he bombarded
by messages describing black men as
rapists dangerous lazy stupid athlete
absence and criminal and in the
questions yeah the questions what’s
wrong with you
you know your dad pick up my mom and dad
use drugs how many kids do you have you
are considering having children are you
did you play basketball how old are you
you’re not as scary as I thought you
would be you don’t scare me anymore
never gonna contribute never gonna have
a job what could you do education why
bother
we better measure your intelligence
first never gonna love never gonna be
loved
another dependent draining the system
poverty forever athletes always
invisible constantly can you see me for
more than just a scary black man you
have no idea what it took for me to get
here today
you can never walk in my shoes you
couldn’t handle it neither could you
these are things I would tell myself as
I struggled with my privilege knowing
that I would feel guilty for seeing the
oppression of others I was tired
fighting my own fight but then somebody
trusted me took a chance to share their
story
ready or not I listened I bet you never
were assumed to be in special education
classes fault around him is story
because they thought you were stealing
and thought to be a criminal
simply because you were black male is it
true
and I bet you were never followed in a
store by people with cameras snapping
your photos that they go home and show
family and friends what they saw in the
store today approached by random
strangers telling you what an
inspiration you are when you know what
they’re really telling you is that
they’re relieved you’ve shown them it
could be so much worse this is true so
what do we do now
Sharyl narratives worst day best day
okay
worst game worst day
so imagine it’s 2012 and I’m sitting
with hope expecting to see a display a
community but instead another blow were
two words not guilty
hope is dashed and I’m reminded once
again that not every life matters
hope is replaced with fear joy with
anger and happiness with sadness another
black soul gone another black body
deemed to be a threat and another black
male blamed for his own death Trayvon
Martin I remember that day you do
I was watching to a betrayal
no one ever ever goes to jail and I am
sorry for that your worst day
occupational therapy in a school for the
handicapped special school I’m seven or
eight years old and two white coats go
around and they collect two and three of
us at a time from our classes and they
take us to a room behind white curtains
and mats on the floor and they tell us
this is where you will learn to dress
and undress yourself independently you
will become a big boy and a big girl
here only babies get dressed by their
mommies and daddies the white coats
pulled out stop watches and they told if
they would be timing us because we’d
have to beat the clock as well every
week we were taunted by their voice is
telling us to hurry up try harder and
there were two ways out of occupational
therapy one was to beat the clock
graduate two with to fail so many times
that you were deemed a waste of time no
potential they broke our spirits a
little bit each week but the real
tragedy
the day that I beat the clock I figured
it out and the Devils and the white
coast they praised Mina complimented me
they told me what a big girl I was that
I might go to the Normal School and they
did that in front of my handicapped
classmates who I left behind the white
curtains
they took my community that day and a
piece of my soul and I never got that
bad I didn’t know they did those things
to children it seems like so much of you
pain has been invisible and I’m sorry
for that best day best day so imagine
it’s 2013
and for the first time in history the
name doctrinally is announced and so
begins a lifetime of service to humanity
you see my family have been service to
humanity for generations through
ministry of song as educators and as
servant leaders in our communities but
there’s been a price for that service in
the form of racism discrimination
second-class citizenship but my family
was willing to pay that price because
they knew one day someone will realize
the full potential of their efforts
I am the realization of those efforts on
the exclamation mark on my family’s
narrative as the first doctor in my
family a beautiful day a day of survival
celebration liberation your best day
July 2017 disability March NDC this is a
day that 800 disabled members and their
allies are called in to celebrate and to
engage in civil disobedience we’re here
to honor our history our leaders who
fought battles against the imprisonment
of our community in institution and
sheltered workshops the battle against
the ugly laws that punished us for
showing our bodies on the streets
chaining himself to buses wheelchairs
walkers bodies and all demanding
universal access and equity that day I
was in awe of our imperfect motion where
no one’s movement for fluid and no one
was symmetrical or proportioned and we
were very atypical in our behaviors it
was a day that we challenged the
oppressive paradigms of morality and we
were liberated and 40 plus years later
the devil and the white coast they don’t
haunt me anymore they have no power over
me I’m here and I am proud and I am
disabled and no mistakes
thank you for trusting me with your need
me too
how does one stay in the struggle and
find community and collective power how
does one find power in a place of
oppression and then surrender power from
positions of privilege maybe through
advocacy faith and humility a light ship
and hope I’m listening I’m hearing that
I’m feeling there and I want to fight
for all that and help I wanna fight but
I don’t know how and I’m afraid I’m just
gonna get it wrong
oh you will
and I will call you out and I hope
you’ll call me in because I’ll call you
in can you handle that yes what do you
need from me believe me
speak up stand up even when I’m not
there share my story and don’t try to
rewrite it to make yourself feel better
call others out don’t let them off the
hook and be prepared to be called in be
honest be real take responsibility take
responsibility
Julie and Steven everyone
born a parent worth fear realize their
joy it muted by the discovery that there
is something wrong with its baby
in fact there are many things wrong with
its baby first
it’s her cry that first cry soft its
weak and then it goes silent for 10
minutes no air they bring her back she
will surely have brain damage
then as her arms too short so short they
look more like slippers than arms her
hands frozen joints hitchhiker thumbs
how is she hold a toothbrush a hairbrush
take care of herself with those hands
her legs they’re bent contracted her
feet or curled in they call that club
feet she’ll never walk on those feet she
has a hole in her mouth cleft palate
she will struggle to find her voice and
spoken word and then as her ears they
are misshapen swollen teeny tiny ear
canals cauliflower ears they call that
she will become one of the heart of
hearing but if she could have live her
parents want to know a life being not
worth living the doctors respond and I
quote unfortunately yes she’s gonna live
take her to the institution she will be
too much this is a life of suffering
people will understand these carrots
there was no discussion there was no
deliberation this was not on the table
AMA against medical advice
these parents turned our backs on
medicine and they said no this child
will not live and die in the shadows of
an institution hid
if a monster an object of shamed
embarrassment this child would not
become another forgotten child in that
place where the water run skill in an
act of love and defiance
they took her home April 25th 1985 a
black baby boy is born to two young
parents seeking to find their way as
they raise their firstborn son a system
that was stressed by their
responsibilities was strained by the
worry of raising a black son in a white
world how do we communicate to our son
that has a very existence will be
considered a threat his parents wondered
how do we tell our son that his humanity
will be denied and his capabilities
questioned how do we teach our son to
love himself knowing that he will be
despised and feared simply because of
the color of his skin how do we keep our
son safe in a world and which he will
never be safe
that little girl would grow up in a
house with a lot of love and a lot of
laughter but all the love and all the
laughter wouldn’t protect her from what
it would mean to be seen in this body in
a world that celebrates symmetry
proportioned bodies and fluid movements
this world would tell her she was
helpless fragile weak deformed ugly a
mistake some would even say a sin and as
those peers sought to raise their black
son they realize that who he bombarded
by messages describing black men as
rapists dangerous lazy stupid athlete
absence and criminal and in the
questions yeah the questions what’s
wrong with you
you know your dad pick up my mom and dad
use drugs how many kids do you have you
are considering having children are you
did you play basketball how old are you
you’re not as scary as I thought you
would be you don’t scare me anymore
never gonna contribute never gonna have
a job what could you do education why
bother
we better measure your intelligence
first never gonna love never gonna be
loved
another dependent draining the system
poverty forever athletes always
invisible constantly can you see me for
more than just a scary black man you
have no idea what it took for me to get
here today
you can never walk in my shoes you
couldn’t handle it neither could you
these are things I would tell myself as
I struggled with my privilege knowing
that I would feel guilty for seeing the
oppression of others I was tired
fighting my own fight but then somebody
trusted me took a chance to share their
story
ready or not I listened I bet you never
were assumed to be in special education
classes fault around him is story
because they thought you were stealing
and thought to be a criminal
simply because you were black male is it
true
and I bet you were never followed in a
store by people with cameras snapping
your photos that they go home and show
family and friends what they saw in the
store today approached by random
strangers telling you what an
inspiration you are when you know what
they’re really telling you is that
they’re relieved you’ve shown them it
could be so much worse this is true so
what do we do now
Sharyl narratives worst day best day
okay
worst game worst day
so imagine it’s 2012 and I’m sitting
with hope expecting to see a display a
community but instead another blow were
two words not guilty
hope is dashed and I’m reminded once
again that not every life matters
hope is replaced with fear joy with
anger and happiness with sadness another
black soul gone another black body
deemed to be a threat and another black
male blamed for his own death Trayvon
Martin I remember that day you do
I was watching to a betrayal
no one ever ever goes to jail and I am
sorry for that your worst day
occupational therapy in a school for the
handicapped special school I’m seven or
eight years old and two white coats go
around and they collect two and three of
us at a time from our classes and they
take us to a room behind white curtains
and mats on the floor and they tell us
this is where you will learn to dress
and undress yourself independently you
will become a big boy and a big girl
here only babies get dressed by their
mommies and daddies the white coats
pulled out stop watches and they told if
they would be timing us because we’d
have to beat the clock as well every
week we were taunted by their voice is
telling us to hurry up try harder and
there were two ways out of occupational
therapy one was to beat the clock
graduate two with to fail so many times
that you were deemed a waste of time no
potential they broke our spirits a
little bit each week but the real
tragedy
the day that I beat the clock I figured
it out and the Devils and the white
coast they praised Mina complimented me
they told me what a big girl I was that
I might go to the Normal School and they
did that in front of my handicapped
classmates who I left behind the white
curtains
they took my community that day and a
piece of my soul and I never got that
bad I didn’t know they did those things
to children it seems like so much of you
pain has been invisible and I’m sorry
for that best day best day so imagine
it’s 2013
and for the first time in history the
name doctrinally is announced and so
begins a lifetime of service to humanity
you see my family have been service to
humanity for generations through
ministry of song as educators and as
servant leaders in our communities but
there’s been a price for that service in
the form of racism discrimination
second-class citizenship but my family
was willing to pay that price because
they knew one day someone will realize
the full potential of their efforts
I am the realization of those efforts on
the exclamation mark on my family’s
narrative as the first doctor in my
family a beautiful day a day of survival
celebration liberation your best day
July 2017 disability March NDC this is a
day that 800 disabled members and their
allies are called in to celebrate and to
engage in civil disobedience we’re here
to honor our history our leaders who
fought battles against the imprisonment
of our community in institution and
sheltered workshops the battle against
the ugly laws that punished us for
showing our bodies on the streets
chaining himself to buses wheelchairs
walkers bodies and all demanding
universal access and equity that day I
was in awe of our imperfect motion where
no one’s movement for fluid and no one
was symmetrical or proportioned and we
were very atypical in our behaviors it
was a day that we challenged the
oppressive paradigms of morality and we
were liberated and 40 plus years later
the devil and the white coast they don’t
haunt me anymore they have no power over
me I’m here and I am proud and I am
disabled and no mistakes
thank you for trusting me with your need
me too
how does one stay in the struggle and
find community and collective power how
does one find power in a place of
oppression and then surrender power from
positions of privilege maybe through
advocacy faith and humility a light ship
and hope I’m listening I’m hearing that
I’m feeling there and I want to fight
for all that and help I wanna fight but
I don’t know how and I’m afraid I’m just
gonna get it wrong
oh you will
and I will call you out and I hope
you’ll call me in because I’ll call you
in can you handle that yes what do you
need from me believe me
speak up stand up even when I’m not
there share my story and don’t try to
rewrite it to make yourself feel better
call others out don’t let them off the
hook and be prepared to be called in be
honest be real take responsibility take
responsibility
Julie and Steven everyone
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