"I have cystic fibrosis, and
sometimes I cough a lot. Here's what
happens
when I get in line at school. the kids in front of me walk real fast,
and
the kids behind me walk real slow. So it's sort of like I'm all
alone."
"This
kid called me the human bowling ball when I came back to school without
hair. I just told her that I sold my hair for a million dollars. I told
her that I was going to buy a kangaroo with the money, and of course a
zoo to keep it in."
"When
I can't play basketball because of my heart problem, there's one mean
boy
in my class who makes fun of me and calls me lazy. I hate it when he
does
that, but at least the other kids tell him to shut up."
"The
teacher was probably trying to be nice, but when she saw somebody
teasing
me, she told the whole class that I had a disease, and that they should
be nice to me. I could feel my face get real hot, and I know that I
blushed.
It was horrible!"
"The
thing that I hate the worst, even worse than IVs in the hospital, is
when
kids whisper behind my back and when they tell me how brave I am. Like
I had a choice about all of this!"
"You
don't LOOK like you have cancer!"
"My
brother has cystic fibrosis. I hate it when he coughs and people tell
my
mom she should take him to the doctor for his cold. They act like she
isn't
taking good care of him. They even say, 'he shouldn't be out in stores
when he is sick like that.' It really bugs me, cause my mom works hard
to take care of my brother."
"Or
how about when people's kids ask, 'Why's he in that wheelchair?' and
the
parents say, 'Shh... Don't you ever ask questions like that!!!' and
drag
their kid away like Owen is gonna give them some disease or like the
kid
is in big trouble or something? I hate that!!! I wish that people would
ask more questions, instead of acting like Owen is some sort of freak."
"I have Ulcerative Colitis and the medicine I take makes my face really
puffy. It is really hard when people who know me very well
don't reconize me. Also, some people, even some of my friends,called me
Chipmunk or Cabbage Patch. I tell them that it doesn't hurt myfeelings
to be polite but it really does."
"I
had to wear a brace on my back because of scoliosis. It 's so hard to
answer
questions from kids like, "how did you break your neck" and "wow, man,
what happened to you?" and "I'm glad I don't have to wear something
(yuck)
like that every day and night for years. You'll never get ANY dates."
"I
have Hemophilia, and I'm missing some clotting factors so my blood
doesn't
clot like "normal people's". That means that sometimes I'm on crutches
and people think I'm just kidding."
"When
Joseph and Jon were babies it took hours to do any shopping. "
Oh,
are they twins?" I often threatened to make a sign and attach it
to their stroller "Yes, we're twins, We're identical, We're ____
month's
old, Mom needs to get home, Please leave her alone." As they got
older and did not develop, I threatened to get them matching
t-shirts
"Yes, we're twins, we're mentally retarded, please quit staring."
"My
son has cystic fibrosis, and is now a grownup and married. School was
very
hard for him because of teachers that didn't understand and children
that
could be so cruel. I spent the good portion of my days speaking
with
principals and teachers. In jr.high he was approached by a
student
asking when he was going to die. It turns out that the science teacher
had told the class what he had when he was absent one time and that he
wasn't going to live very long."
"I
have Treacher Collins syndrome and there were many times when I was the
butt of the kids' jokes. One boy from the junior high always
entertained
himself on the bus by making fun of everyone so it was inevitable that
he should get around to making fun of me. He sat behind me one hot,
sticky
afternoon. Leaning over the seat he asked in a snide voice, in
reference
to my rather large nose, "Are you related to Pinocchio?" After a
moment's
hesitation to get over my surprise, I turned to him and calmly said,
"Why,
yes I am. He was my mother's great uncle's cousin's nephew. How ever
did
you guess that we were relatives?" Stunned, the boy clamped his mouth
shut,
sat down in his seat, and never said another word to me again."
"I've
had Juvenile Rheumatoid Arthritis (JRA) since I've been 12 years old.
The
only time it acts up bad now is when it rains. I've had a hard
time
because by looking at me you wouldn't be able to tell I was sick at all
and on certain days I don't even feel sick which makes people tell me
that
I fake it. Even the teachers give me a hard time. Some days
I'm fine running around the hall and doing what a normal kid is able to
do. And other days I can't even hold a pencil."
"I
have asthma. It's hard at school when my gym teacher thinks I'm
just
not being diligent when I stop every few minutes in class.
I told her what was wrong and she didn't believe me. I felt so bad. It
was the worst when we had field day at school and I could not
participate.
It was really annoying to have every one calling me lazy when I could
not
participate. I
was really mad."
"My
mother is from Singapore and my dad is from Denmark. When I was in the
junior school, people used to call me Chinese Boy and Ching because my
eyes are different. I used to come home and cry because I was unhappy.
One day, I started calling people English Boy and they stopped. It
isn't
funny calling people names because we are all different and we can't
change
that. "
“I
can never be just me…it’s all about the wheelchair. A chair that I have
because of the muscular dystrophy, but I am not the wheelchair. And I
am
definitely not the muscular dystrophy. You’d never believe it, though,
because even my friends treat me like I’m perishable. They want to push
my wheelchair and carry my books. Some kids I definitely do not like
talk
to me like I’m four years old instead of ten; you know, baby talk.
Disgusting.
If I were bigger and they were smaller, I’d answer them like 'what are
you trying to say, twerp heads?'”
"My
son has cystic fibrosis. Sometimes we're very sad about it. When we try
to explain about his illness to people, some of them say 'oh maybe
he'll
grow out of it.' They just don't understand that it's forever."
"Now
this one takes the cake. I have a lot of scars from a burn on my face.
One day I was with my mom in this neighborhood in NYC, and all these
ladies
were sitting on their front steps talking. When we walked by, one of
them
looked at me and then made the sign of the cross. I guess she thought I
was a devil or something."
"When
Brianna was 8 months old, she had a number of nevi removed from her
head.
Her head was almost completely bandaged for almost one week. Two
days after surgery, I took Josh, our then 3 1/2 year old son, and
Brianna
to buy some Tylenol for her. I put her in the cart in her infant
carrier and Josh in the back of the cart. A lady walked up to us,
looked at Bri, and said to her, "Did your big brother do that to
you?"
"When
my daughter was very little, soon after she sustained an accident
that resulted in her having facial burns, I was thinking of making a
sign,
$.10 a peek, because of all the staring."
"When
is was in 3rd grade it was my first year at a new elementary school. I
had just moved there and had NO friends. Anyway, I made friends very
quickly,
but then when I met the parents or the parents saw me, they warned
their
kids not to go near me or be my friend. When I heard that parents were
telling their kids that I cried for almost 6 hours. I had to go
to
a counselor 'cause kids were complaining that I had warts and
parents
were complaining 'cause they thought their kids would get them. I
became
the nerd of the school in just 2 days. Now I have learned how to deal
with
my problems and I hope you can too."
"I
have something called Sturge-Weber Syndrome. Because of it, I
have
a very large purplish-red birthmark on half of my face and scalp.
When I was in grammar school, the boys used to call me "Red
Face."
It made me cry while the entire class of 36 got a good laugh at my
expense.
Then one day, calling a friend, I noticed that the boy who teased me
the
most went by a nick name all the time. Well, the next time he
called
me "Red Face," I responded by telling him, "Oh, shut up, Joseph
Blow!"
Boy, did he get mad! "That's -that's not my name! It's
Joe!"
So I told him, "Now you know how I feel. My name's not Red
Face."
Took a few reminders, but he learned."
"I
was born a bit too early and as a result my eye muscles aren't
coordinated.
It's frustrating when people stare and then look at me from one
direction,
then another, and ask meanly, "are you looking at me completely, or
with
one eye?"
"I
have kidney stones that kill and make me go to the bathroom as often as
every 5 minutes. People look at me like I am weird and crazy, and
sometimes
tell me that I must be faking it! They should be in the ER with
me.
It hurts when people don't believe what they can't see."
"Right
when I returned to school after chemo, I got sick in class.
I ran out of the room, barely making it down the hall before I cut
loose.
When I got back, the guy next to me started laughing. As cunning as I
am,
I grabbed his backpack, open it up, and FAKED the BIGGEST HURL EVER
HEARD!!!"
"I
was born prematurely, with a slight vision problem. Let me tell you how
frustrating it is when people stare--and then look at me from one
direction,
then another, and ask meanly ' are you looking at me completely, or
with
one eye?' I can't stand it. "
"I
just started school after a summer spent in and out of the hospital,
and
kids look at me as if #1, I just dropped in from another planet, or #2,
was about to drop dead on the floor. I especially hate the pity!"
"I
have very, very, very, truly, very, mild Cerebral Palsy, which affects
my brain and my muscles. Kids often tease me 'cause I can't run fast.
If
only one girl didn't start rumors about me...I don't even go in a
wheelchair!"
"Psoriasis:
It is not fun having this; All of the kids tease me; But why, I ask?
What
if they were stuck in my body; what if they had a disease? So many what
if's, and for 10-year-old me, so many 'you have its'."
"I
have a disease called sickle cell anemia which is not good. This
disease
makes my eyes very yellow, and then what happens is that people make
fun
of me...even grownups. They even act as if I am contagious."
"It
really drives me nuts when people say that only old people get
arthritis.
I've had a type of arthritis called ankylosing spondylitis since 5th
grade
and it totally destroyed my hip joint. I sure wishe that people would
not
say that if I would do this or that I would get rid of the arthritis –
like I am not trying hard enough.
"I've
always been very short and people assume I'm six when I'm really
thirteen.
I hate it when I get patted on the head and told I'm so cute. Gross.
I'm
for banning all size discrimination and making it illegal."
"I
was walking with my sister and this man asked me if I had a sports
injury,
since I was limping. When I told him that I had recovered from cancer
and
had a titanium rod in my leg , he about freaked out, saying things
like,
'you're so brave' and 'here I thought I had problems'. Spare me!"
"You'll
never believe this one. I was told that my new school had a 'disabled
toilet'
I could use. Well, there were actually 5 steps to climb to get up
to it - and this room doubled as a place for lost property. Go
figure!!"
"When
I was born, everything seemed perfectly normal. Then I got meningitis
and
was in the hospital for 2 weeks. As a result of the meningitis, I
became
deaf. When people see my implant, they often say "what's that
thing
on your head?" Sometimes I say 'hey watch it ...I'm a jr.
undercover
FBI agent!' That's the easiest thing to do, because if I don't, they
keep
asking me really frustrating questions."
"I
shake sometimes, and bad words come out of my mouth from nowhere. I
wish
people knew that I cannot help what my body does, and what my mouth
says
during those times. I don't know why it happens. What I do know is that
the words kids use to tease me stick to me like they were superglued
on.
I am really not a freak. Really!"
"I
have a problem with my eyes-- they blink a lot and it looks like I
squint,
too. The kids make fun of me by blinking or squinting just like
me
and I hate it!"
"I
had to go to the hospital because I was sick, and some lady with a
white
jacket came into my room to put a needle in my arm. She poked me three
times, and then she told me that I had very bad veins, and that she
couldn't
even use a big boy needle. I was sad and mad and I didn't want to talk
to anybody after that."
"I
take care of my sister after school. She has autism, and I used to get
called names because of her. I didn't mind the kids calling ME names
but
when they called my sister names I was really upset. One boy said to me
"Your sister is ssssssssssssooooooooo thick! She can't
do anything for herself!!!" I was
sssssooooooo
mad that I threw my school dinner over him and stormed out the
hall."
"I'm
17 and have severe asthma. The only place I have attacks is at school
and
the doctors have pinpointed it to a mold sensitivity. Anyway, I've been
on "homebound intruction" for almost a year now. I miss being a
"normal"
teenager so when there were soccer games and football games in the Fall
I was always there. My "friends" would say stuff like, "You look fine
so
why aren't you in school?" I even had a teacher tell my whole class
that
I "freak out" in our school building because it has "cooties" ! "
"One
day during my treatments for lymphoma, I was out shopping, and I
noticed
that some adults were staring at me. They didn't say anything, or ask
any
questions, just stared. I figured that I'd give them something to really
stare at, so as I walked past, I tipped my wig at them, and said 'good
afternoon'. I kept walking, but I figure that they all must have
fainted.
I got them big time!"
"This
kid in school asked me once if I was born in a wheelchair. I told him,
'of course not, you idiot, that would have been much too painful for my
mother!'"
"I
have these bumps on my skin and my eyes are a little bit yellow from
this
medical condition I have and it is amazing how many kids are not
allowed
to play with me because their parents assume I'm contagious. I am not,
so it drives me nuts!"
"I
was recently diagnosed with Celiac Disease, which means I have to
remain
for life on a "gluten-free" diet. I can't even eat a crumb of wheat,
oats,
rye, barley and many other processed foods without getting very, very
ill.
I lost a lot of weight before I was diagnosed, and people started being
mean to me, telling me that I was faking being sick, it was just in "my
head" , and that I must be anorexic. Even now, if someone tries to give
me a donut and I say no thank-you
or that I can't, they tell me, "Oh,
its
low in fat if that's what you're worried about!" I hate being judged
like
that. I never chose to be on this diet!"
"What
do you think of this one? When I moved into a new village, I was
learning
about the school I'd be going to. and finding out that I would be able
to use a special, disabled toilet. Imagine my surprise when I saw
that I would have to walk up three stairs to get to it. Even if I could
have done that, I would have had to compete with brooms and cleaning
materials.
It was an all-purpose room, I guess!"
"I
was on my lunch break and went to eat at this restaurant. I was
asked
if I wanted smoking or non-smoking. I told them I wanted
non-smoking,
but the wait was going to be about 30 minutes. I asked if it
would
take less time for smoking. She said, "It's available now.
Can you go up steps?" I gave her a crazy look and rolled my
wheelchair
out the door. I mean, why even offer if it is upstairs?"
"Hey,
do you want to hear something stupid? I've got epilepsy and once
...this...
girl was nagging me on why I always sat in the back of the room when we
watch an education video at school and why I often wear a hat. I told
her
how sitting too close to bright colours and lots of noise can set off a
fit and that my hat blocks out noise. She immediately said "You haven't
had a fit before, though!" "Yes I have!" I said. "No," she said
superiorly,
"If you've had a fit, you'd be dead!" When I told her that some people
have loads of fits in a day, she told me that I was stupid! As if she
knows
more about my illness than I do!"
  
Joan Fleitas,
Ed.D., R.N.
Associate Professor of
Nursing,
Lehman College, CUNY
Bronx, New York
10468
06824
Last updated: May
11, 2006
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