so here’s the deal freshman year of high school I had a plan I wanted to get
school I had a plan I wanted to get
school I had a plan I wanted to get great grades graduate early and go to my
great grades graduate early and go to my
great grades graduate early and go to my dream school since elementary school
dream school since elementary school
dream school since elementary school Harbor become an anthropologist and I
Harbor become an anthropologist and I
Harbor become an anthropologist and I was on track I was doing well
was on track I was doing well
was on track I was doing well academically I had a bunch of
academically I had a bunch of
academically I had a bunch of extracurricular projects in the works
extracurricular projects in the works
extracurricular projects in the works and I think barsa tea and swimming
but that summer instead of getting my
but that summer instead of getting my driver’s license
driver’s license
driver’s license testing out of algebra to going to swim
testing out of algebra to going to swim
testing out of algebra to going to swim camp at Michigan State and getting my
camp at Michigan State and getting my
camp at Michigan State and getting my lifeguard certificate
lifeguard certificate
lifeguard certificate I slept you see the powers that be
I slept you see the powers that be
I slept you see the powers that be decided that instead of all that I
decided that instead of all that I
decided that instead of all that I should get mono and not in the fun way
should get mono and not in the fun way
should get mono and not in the fun way that you can catch mono if you catch my
that you can catch mono if you catch my
that you can catch mono if you catch my drift despite my best efforts I didn’t
drift despite my best efforts I didn’t
drift despite my best efforts I didn’t recover my symptoms started growing
recover my symptoms started growing
recover my symptoms started growing beyond the standard symptoms of mono I
beyond the standard symptoms of mono I
beyond the standard symptoms of mono I had fevers headaches dizziness brain fog
had fevers headaches dizziness brain fog
had fevers headaches dizziness brain fog a racing heart nausea and extreme
a racing heart nausea and extreme
a racing heart nausea and extreme fatigue one of the fun things I did get
fatigue one of the fun things I did get
fatigue one of the fun things I did get to do that summer was visit Georgia and
to do that summer was visit Georgia and
to do that summer was visit Georgia and one day when I was on a day trip to
one day when I was on a day trip to
one day when I was on a day trip to Senoia I had made it halfway down the
Senoia I had made it halfway down the
Senoia I had made it halfway down the Main Street before collapsing my immune
Main Street before collapsing my immune
Main Street before collapsing my immune system was so compromised that I’d
system was so compromised that I’d
system was so compromised that I’d gotten pneumonia in the south during
gotten pneumonia in the south during
gotten pneumonia in the south during summer has anyone here ever heard of
summer has anyone here ever heard of
summer has anyone here ever heard of Senoia like raise of hands now yeah okay
Senoia like raise of hands now yeah okay
Senoia like raise of hands now yeah okay it’s where they filmed the walking dead
it’s where they filmed the walking dead
it’s where they filmed the walking dead so I was in the perfect place for a
so I was in the perfect place for a
so I was in the perfect place for a walk-on role as a zombie and I had the
walk-on role as a zombie and I had the
walk-on role as a zombie and I had the dead part down just not the walking by
dead part down just not the walking by
dead part down just not the walking by November I’d stopped being able to go to
November I’d stopped being able to go to
November I’d stopped being able to go to school on in fact on Black Friday in an
school on in fact on Black Friday in an
school on in fact on Black Friday in an attempt to get me out of the house my
attempt to get me out of the house my
attempt to get me out of the house my mom and I went to Joanne’s where I could
mom and I went to Joanne’s where I could
mom and I went to Joanne’s where I could get from the car to the front to the
get from the car to the front to the
get from the car to the front to the front door into a wheelchair
front door into a wheelchair
front door into a wheelchair by the time that I got to the back of
by the time that I got to the back of
by the time that I got to the back of the store I was so nauseous that I had
the store I was so nauseous that I had
the store I was so nauseous that I had to go home again it was the most fun I’d
to go home again it was the most fun I’d
to go home again it was the most fun I’d had all month and I have brain fog still
had all month and I have brain fog still
had all month and I have brain fog still okay so ever since using a wheelchair
okay so ever since using a wheelchair
okay so ever since using a wheelchair okay wait no no my brain often fails me
okay wait no no my brain often fails me
okay wait no no my brain often fails me in the following months I continued
in the following months I continued
in the following months I continued getting worse and despite a ton of tests
getting worse and despite a ton of tests
getting worse and despite a ton of tests like EKGs halter monitors a tilt table
like EKGs halter monitors a tilt table
like EKGs halter monitors a tilt table test and a ton of blood tests
test and a ton of blood tests
test and a ton of blood tests we couldn’t figure out what was going on
we couldn’t figure out what was going on
we couldn’t figure out what was going on by the time that I got to the Mayo
by the time that I got to the Mayo
by the time that I got to the Mayo Clinic in January I was so ill that I
Clinic in January I was so ill that I
Clinic in January I was so ill that I couldn’t get out of a wheelchair for
couldn’t get out of a wheelchair for
couldn’t get out of a wheelchair for more than a minute
more than a minute
more than a minute even then with my heart racing and
even then with my heart racing and
even then with my heart racing and trying not to faint after four days
trying not to faint after four days
trying not to faint after four days there I was diagnosed I had postural
there I was diagnosed I had postural
there I was diagnosed I had postural orthostatic tachycardia syndrome or pots
orthostatic tachycardia syndrome or pots
orthostatic tachycardia syndrome or pots not the fun way
not the fun way
not the fun way that you can get pot pots is a form of
that you can get pot pots is a form of
that you can get pot pots is a form of dissident Omiya it basically means that
dissident Omiya it basically means that
dissident Omiya it basically means that when I stand my nervous system doesn’t
when I stand my nervous system doesn’t
when I stand my nervous system doesn’t pump my blood up to my head and heart
pump my blood up to my head and heart
pump my blood up to my head and heart correctly and so that’s what causes all
correctly and so that’s what causes all
correctly and so that’s what causes all of my symptoms with a beta blocker my
of my symptoms with a beta blocker my
of my symptoms with a beta blocker my heart can calm down but my autonomic
heart can calm down but my autonomic
heart can calm down but my autonomic nervous system still doesn’t work
nervous system still doesn’t work
nervous system still doesn’t work properly currently I’m in junior in high
properly currently I’m in junior in high
properly currently I’m in junior in high school and I’m still working with my
school and I’m still working with my
school and I’m still working with my doctors to improve to improve my
doctors to improve to improve my
doctors to improve to improve my symptoms because the additional
symptoms because the additional
symptoms because the additional treatments for pots just make me worse
treatments for pots just make me worse
treatments for pots just make me worse 25% of pots patients are disabled to the
25% of pots patients are disabled to the
25% of pots patients are disabled to the point of not being able to attend work
point of not being able to attend work
point of not being able to attend work or school and scientists have compared
or school and scientists have compared
or school and scientists have compared the quality of life of someone with pots
the quality of life of someone with pots
the quality of life of someone with pots to someone with congestive heart failure
to someone with congestive heart failure
to someone with congestive heart failure or someone on dialysis for kidney
or someone on dialysis for kidney
or someone on dialysis for kidney failure before I got sick I thought of
failure before I got sick I thought of
failure before I got sick I thought of disability as something that I could
disability as something that I could
disability as something that I could easily see I had no idea that someone
easily see I had no idea that someone
easily see I had no idea that someone could be so ill that they became
could be so ill that they became
could be so ill that they became disabled or that there were invisible
disabled or that there were invisible
disabled or that there were invisible disabilities like pots if I’m not using
disabilities like pots if I’m not using
disabilities like pots if I’m not using a chair and I’m wearing enough makeup I
a chair and I’m wearing enough makeup I
a chair and I’m wearing enough makeup I look fine right right right okay but I
look fine right right right okay but I
look fine right right right okay but I can’t want standing or walking long
can’t want standing or walking long
can’t want standing or walking long enough so I after five minutes I look
enough so I after five minutes I look
enough so I after five minutes I look like a ghost and I’ll need somewhere to
like a ghost and I’ll need somewhere to
like a ghost and I’ll need somewhere to collapse the easiest way to explain my
collapse the easiest way to explain my
collapse the easiest way to explain my energy levels is with the spoon theory
energy levels is with the spoon theory
energy levels is with the spoon theory it was created in 2003 by Christine
it was created in 2003 by Christine
it was created in 2003 by Christine misery and Ino and is now used by a lot
misery and Ino and is now used by a lot
misery and Ino and is now used by a lot of chronically ill people we call
of chronically ill people we call
of chronically ill people we call ourselves spoon ease it quits spoons two
ourselves spoon ease it quits spoons two
ourselves spoon ease it quits spoons two units of energy for example it takes me
units of energy for example it takes me
units of energy for example it takes me about two spoons to get out of to get
about two spoons to get out of to get
about two spoons to get out of to get out of bed take a shower and get dressed
out of bed take a shower and get dressed
out of bed take a shower and get dressed in the morning and it takes about three
in the morning and it takes about three
in the morning and it takes about three to go to my 50-minute class here at LSU
to go to my 50-minute class here at LSU
to go to my 50-minute class here at LSU and those are all the spoons that I have
and those are all the spoons that I have
and those are all the spoons that I have in a day I never know if I’ll have that
in a day I never know if I’ll have that
in a day I never know if I’ll have that many if I use more than my five spoons
many if I use more than my five spoons
many if I use more than my five spoons of the day I’ll have less tomorrow so
of the day I’ll have less tomorrow so
of the day I’ll have less tomorrow so doing this
doing this
doing this going over my spoon limit ever since I
going over my spoon limit ever since I
going over my spoon limit ever since I started using wheelchairs I’ve been
started using wheelchairs I’ve been
started using wheelchairs I’ve been thinking about one extremely overused
thinking about one extremely overused
thinking about one extremely overused trope the only examples of wheelchair
trope the only examples of wheelchair
trope the only examples of wheelchair users standing up that I’ve seen in
users standing up that I’ve seen in
users standing up that I’ve seen in media are used for an AHA they’ve been
media are used for an AHA they’ve been
media are used for an AHA they’ve been thinking it moment the one I remembered
thinking it moment the one I remembered
thinking it moment the one I remembered the most was in an episode of Cory in
the most was in an episode of Cory in
the most was in an episode of Cory in the house where Stanley pretends and
the house where Stanley pretends and
the house where Stanley pretends and sprained his ankle to get extra sympathy
sprained his ankle to get extra sympathy
sprained his ankle to get extra sympathy and take attention away from Cory this
and take attention away from Cory this
and take attention away from Cory this trope keeps me on edge whenever I’m out
trope keeps me on edge whenever I’m out
trope keeps me on edge whenever I’m out in a wheelchair one time last year I was
in a wheelchair one time last year I was
in a wheelchair one time last year I was hanging out with some friends and we
hanging out with some friends and we
hanging out with some friends and we borrowed a wheelchair in a store to save
borrowed a wheelchair in a store to save
borrowed a wheelchair in a store to save energy as we looked into the shops what
energy as we looked into the shops what
energy as we looked into the shops what if I was kept pushing me in really fast
if I was kept pushing me in really fast
if I was kept pushing me in really fast spurts even though I protested but
spurts even though I protested but
spurts even though I protested but actually I was having the most fun that
actually I was having the most fun that
actually I was having the most fun that I’ve had in months and I finally decided
I’ve had in months and I finally decided
I’ve had in months and I finally decided to stop protesting and the wheels caught
to stop protesting and the wheels caught
to stop protesting and the wheels caught on the sidewalk and I fell face forward
on the sidewalk and I fell face forward
on the sidewalk and I fell face forward I really didn’t have a plan I just got
I really didn’t have a plan I just got
I really didn’t have a plan I just got back up and back in the chair but I did
back up and back in the chair but I did
back up and back in the chair but I did torment him a ton later and my other
torment him a ton later and my other
torment him a ton later and my other friend said that she could see people in
friend said that she could see people in
friend said that she could see people in the parking lot staring at us giving us
the parking lot staring at us giving us
the parking lot staring at us giving us the eyes of you are disrespecting real
the eyes of you are disrespecting real
the eyes of you are disrespecting real disabled people and playing with a
disabled people and playing with a
disabled people and playing with a wheelchair if the only examples that we
wheelchair if the only examples that we
wheelchair if the only examples that we see of peek of people in wheelchairs
see of peek of people in wheelchairs
see of peek of people in wheelchairs standing up are when they’re faking an
standing up are when they’re faking an
standing up are when they’re faking an injury all together for advantages how
injury all together for advantages how
injury all together for advantages how can we be expected to know that there
can we be expected to know that there
can we be expected to know that there are you wheelchair users that can stand
are you wheelchair users that can stand
are you wheelchair users that can stand I’ve read countless stories of people
I’ve read countless stories of people
I’ve read countless stories of people with invisible disabilities using
with invisible disabilities using
with invisible disabilities using mobility aids and getting harassed for
mobility aids and getting harassed for
mobility aids and getting harassed for it there have been people with notes
it there have been people with notes
it there have been people with notes left on their windshields their mirrors
left on their windshields their mirrors
left on their windshields their mirrors broken and their cars keyed we as humans
broken and their cars keyed we as humans
broken and their cars keyed we as humans have this natural tendency to make
have this natural tendency to make
have this natural tendency to make assumptions even if we don’t know what
assumptions even if we don’t know what
assumptions even if we don’t know what we’re making assumptions about those
we’re making assumptions about those
we’re making assumptions about those people were trying to make sure that no
people were trying to make sure that no
people were trying to make sure that no one took advantage of disabled parking
one took advantage of disabled parking
one took advantage of disabled parking but they were actually hurting real
but they were actually hurting real
but they were actually hurting real disabled people in the process
disabled people in the process
disabled people in the process so through my experience I’ve learned
so through my experience I’ve learned
so through my experience I’ve learned that there’s no wrong way to be disabled
that there’s no wrong way to be disabled
that there’s no wrong way to be disabled you can stand beneath a wheelchair you
you can stand beneath a wheelchair you
you can stand beneath a wheelchair you can look happy despite being an extreme
can look happy despite being an extreme
can look happy despite being an extreme pain my illness completely changed my
pain my illness completely changed my
pain my illness completely changed my life
life
life I learned that changing one detail can
I learned that changing one detail can
I learned that changing one detail can change the entire experience as I was
change the entire experience as I was
change the entire experience as I was going through all this I was meeting
going through all this I was meeting
going through all this I was meeting more disabled people and learning more
more disabled people and learning more
more disabled people and learning more about other marginalized groups a term
about other marginalized groups a term
about other marginalized groups a term that I learned about was
that I learned about was
that I learned about was intersectionality
intersectionality
intersectionality intersectionality is defined as the
intersectionality is defined as the
intersectionality is defined as the interconnected nature of social
interconnected nature of social
interconnected nature of social categorization such as but not limited
categorization such as but not limited
categorization such as but not limited to race class and gender as they apply
to race class and gender as they apply
to race class and gender as they apply to a given individual or group regarded
to a given individual or group regarded
to a given individual or group regarded as creating overlapping and
as creating overlapping and
as creating overlapping and interdependent systems of discrimination
interdependent systems of discrimination
interdependent systems of discrimination or disadvantage the term was coined in
or disadvantage the term was coined in
or disadvantage the term was coined in 1989 by kimberlé crenshaw when she
1989 by kimberlé crenshaw when she
1989 by kimberlé crenshaw when she heard about a case involving a woman
heard about a case involving a woman
heard about a case involving a woman named Emma Grafton Reid who was denied a
named Emma Grafton Reid who was denied a
named Emma Grafton Reid who was denied a job at General Motors I believed it was
job at General Motors I believed it was
job at General Motors I believed it was because she was a black woman because
because she was a black woman because
because she was a black woman because the company had only ever hired women
the company had only ever hired women
the company had only ever hired women that were white and black people that
that were white and black people that
that were white and black people that were men but the court would only let
were men but the court would only let
were men but the court would only let her have the case if she was suing for
her have the case if she was suing for
her have the case if she was suing for either racial or gender discrimination
either racial or gender discrimination
either racial or gender discrimination she was at the intersecting disadvantage
she was at the intersecting disadvantage
she was at the intersecting disadvantage of being black and a woman but the court
of being black and a woman but the court
of being black and a woman but the court couldn’t see that intersection an easily
couldn’t see that intersection an easily
couldn’t see that intersection an easily visualized example of intersectionality
visualized example of intersectionality
visualized example of intersectionality is the wage gap it’s often mentioned to
is the wage gap it’s often mentioned to
is the wage gap it’s often mentioned to talk about gender inequality but the
talk about gender inequality but the
talk about gender inequality but the wage gap is even larger for men and
wage gap is even larger for men and
wage gap is even larger for men and women of color for example a Latina
women of color for example a Latina
women of color for example a Latina woman holds both the identity of a woman
woman holds both the identity of a woman
woman holds both the identity of a woman and a Latin ex person and is paid less
and a Latin ex person and is paid less
and a Latin ex person and is paid less because she holds both of those
because she holds both of those
because she holds both of those identities historically people felt that
identities historically people felt that
identities historically people felt that they had to choose between black civil
they had to choose between black civil
they had to choose between black civil rights or women’s rights for example
rights or women’s rights for example
rights or women’s rights for example white women’s rights activists such as
white women’s rights activists such as
white women’s rights activists such as susan b anthony decided to fight for
susan b anthony decided to fight for
susan b anthony decided to fight for only white women’s rights to vote
only white women’s rights to vote
only white women’s rights to vote concluding that women of color could
concluding that women of color could
concluding that women of color could just get their rights later or simply
just get their rights later or simply
just get their rights later or simply not caring whether they got them at all
not caring whether they got them at all
not caring whether they got them at all there’s an example of this struggle
there’s an example of this struggle
there’s an example of this struggle between choosing between civil rights or
between choosing between civil rights or
between choosing between civil rights or women’s rights in the docu-series good
women’s rights in the docu-series good
women’s rights in the docu-series good girls revolt where the actress that
girls revolt where the actress that
girls revolt where the actress that portrays civil rights attorney and now
portrays civil rights attorney and now
portrays civil rights attorney and now congresswoman representing the District
congresswoman representing the District
congresswoman representing the District of Columbia Illinois owner Holmes Norton
of Columbia Illinois owner Holmes Norton
of Columbia Illinois owner Holmes Norton says this these women have something
says this these women have something
says this these women have something very important with us in common with us
very important with us in common with us
very important with us in common with us they’re second-class citizens and you
they’re second-class citizens and you
they’re second-class citizens and you and I know exactly how that feels don’t
and I know exactly how that feels don’t
and I know exactly how that feels don’t we kept from your full potential paid
we kept from your full potential paid
we kept from your full potential paid less than you’re worth talk down to told
less than you’re worth talk down to told
less than you’re worth talk down to told to shut up stay in your place these
to shut up stay in your place these
to shut up stay in your place these women live in a box just like you so
women live in a box just like you so
women live in a box just like you so don’t be fooled because their box looks
don’t be fooled because their box looks
don’t be fooled because their box looks a little more comfortable than yours
a little more comfortable than yours
a little more comfortable than yours it’s still a box and the only way that
it’s still a box and the only way that
it’s still a box and the only way that any of us are going to break out of this
any of us are going to break out of this
any of us are going to break out of this box is if we stand together because when
box is if we stand together because when
box is if we stand together because when the second-class citizens of the world
the second-class citizens of the world
the second-class citizens of the world stand with each other not against each
stand with each other not against each
stand with each other not against each other that’s how you change the world so
other that’s how you change the world so
other that’s how you change the world so when you have these women that’s how you
when you have these women that’s how you
when you have these women that’s how you for yourself
for yourself
for yourself it’s not as simple as man or woman black
it’s not as simple as man or woman black
it’s not as simple as man or woman black or white rich or poor gay or straight or
or white rich or poor gay or straight or
or white rich or poor gay or straight or abled or disabled experiences can
abled or disabled experiences can
abled or disabled experiences can overlap and not everyone falls on one
overlap and not everyone falls on one
overlap and not everyone falls on one side or another for example this quote
side or another for example this quote
side or another for example this quote really sums that up pretty well there’s
really sums that up pretty well there’s
really sums that up pretty well there’s no such thing a single issue struggles
no such thing a single issue struggles
no such thing a single issue struggles because we do not live single issues
because we do not live single issues
because we do not live single issues issue lives rights for oppressed groups
issue lives rights for oppressed groups
issue lives rights for oppressed groups are not mutually exclusive evidence
are not mutually exclusive evidence
are not mutually exclusive evidence shows that adding one detail changes the
shows that adding one detail changes the
shows that adding one detail changes the whole experience so we can’t be like
whole experience so we can’t be like
whole experience so we can’t be like that Court was they understood the parts
that Court was they understood the parts
that Court was they understood the parts but not the whole human experience is
but not the whole human experience is
but not the whole human experience is not that simple we can’t just pick
not that simple we can’t just pick
not that simple we can’t just pick either/or when I got sick we had to
either/or when I got sick we had to
either/or when I got sick we had to figure out a way to handle my education
figure out a way to handle my education
figure out a way to handle my education while trying to figure that out it was
while trying to figure that out it was
while trying to figure that out it was implied to me
implied to me
implied to me that I really stick the only thing that
that I really stick the only thing that
that I really stick the only thing that had changed the only intersection that
had changed the only intersection that
had changed the only intersection that was added was becoming chronically ill I
was added was becoming chronically ill I
was added was becoming chronically ill I still have my goals I just have to reach
still have my goals I just have to reach
still have my goals I just have to reach them a different way just because of
them a different way just because of
them a different way just because of this advant disadvantage I was at this
this advant disadvantage I was at this
this advant disadvantage I was at this disadvantage of being ill I was expected
disadvantage of being ill I was expected
disadvantage of being ill I was expected to lower my goals and I don’t have only
to lower my goals and I don’t have only
to lower my goals and I don’t have only one thing to say to that and it’s a line
one thing to say to that and it’s a line
one thing to say to that and it’s a line from a song by my favorite rapper Desa
I’ve got a lot of imperfections but I
I’ve got a lot of imperfections but I don’t count my ambition in them the
don’t count my ambition in them the
don’t count my ambition in them the worst thing that ever happened to me was
worst thing that ever happened to me was
worst thing that ever happened to me was also the biggest learning experience of
also the biggest learning experience of
also the biggest learning experience of my life but it doesn’t take a
my life but it doesn’t take a
my life but it doesn’t take a life-changing experience to learn I
life-changing experience to learn I
life-changing experience to learn I don’t know what it’s like to be a black
don’t know what it’s like to be a black
don’t know what it’s like to be a black woman a trans Asian person a gay Latin
woman a trans Asian person a gay Latin
woman a trans Asian person a gay Latin next person a blind person or an
next person a blind person or an
next person a blind person or an immigrant I do not know what I do not
immigrant I do not know what I do not
immigrant I do not know what I do not know what I kind of do is listen to and
know what I kind of do is listen to and
know what I kind of do is listen to and learn their experiences learn their
learn their experiences learn their
learn their experiences learn their stories and amplify their voices
stories and amplify their voices
stories and amplify their voices accepting your privileges shouldn’t be a
accepting your privileges shouldn’t be a
accepting your privileges shouldn’t be a daunting or guilt-ridden thing if we
daunting or guilt-ridden thing if we
daunting or guilt-ridden thing if we acknowledge the privileges we have
acknowledge the privileges we have
acknowledge the privileges we have that’s how we can start to tackle the
that’s how we can start to tackle the
that’s how we can start to tackle the issues it’s kind of like saying
issues it’s kind of like saying
issues it’s kind of like saying accepting you have a problem is the
accepting you have a problem is the
accepting you have a problem is the first step to recovery after that we
first step to recovery after that we
first step to recovery after that we have to be open to learn humanity will
have to be open to learn humanity will
have to be open to learn humanity will benefit when more people listen to each
benefit when more people listen to each
benefit when more people listen to each other
other
other from Disney’s Pocahontas if you walk the
from Disney’s Pocahontas if you walk the
from Disney’s Pocahontas if you walk the footsteps of a stranger you’ll learn
footsteps of a stranger you’ll learn
footsteps of a stranger you’ll learn things you never knew you never knew
things you never knew you never knew
things you never knew you never knew thank you
”
Be First to Comment