exactly five years ago I was
point of turning my mom for the first
time
rafael the little one I was carrying in my
belly was a child that was very
desired I for a long time had
wanted to be normal and was super
eager to know
in the fourth month of pregnancy
I was so excited the doctor
the doctor in the fourth month of
fourth month he told me that my son were going to
be with dawn syndrome
he told me with sadness he told me with
a lot of thinking
for many people the diagnosis of
disability is a diagnosis that hurts
that weighs that should not happen
It hurt to know that they were talking about my son
of my beloved son
just calling him for his
malformations for their defects for their
irregularities for me my son was
perfect
nobody told me about dignity or life of
the one that we all have by the
simple fact of being alive
when the people who were close to me
he found out what was happening in my
pregnancy because people had me as
pity it hurt that I was
going through such a painful experience
I was in a spiral that made me
to be worse and worse worse and although
I always felt bad a moment later
I felt worse
I was not willing to let myself fall
I wanted my son to be seen not
as a disabled poor like the
people who were around told me
poor thing are going to be going to get to suffer
to have a bad time because that should not
happen to him because then what fault has
they told me
there were other people beside me who
they said something completely different
they said not you are lucky that father
that your son is going to be like that is a little angel
God chose you to make your mother by
something that he saw in you super special
they told me I was lucky because I
were going to do with the love syndrome the
happiness syndrome and my prize was going
to be always have a company of
eternal because also my son for his
condition was going to be a boy who was going to
be a child all of life
I did not want to be a mom nor a mistake nor
of an angel I wanted to be
rafael’s mom and the eyes that I used
to see them was what I wanted all of
other people were able to
find I did not want pity nor
privileges he just wanted to be his
mom
when people see only the
dawn syndrome the label the one
put here on the forehead and it would seem that
it’s a stigma that then costs a lot
remove
they ran the risk of forgetting that my
son was a human being like any
another perfect human being did not have enough
nothing did not lack anything so it was
perfect
when they spoke of him thus to
level it hurt a lot to be called
dawn to call him because of his condition
forgetting that he was rafael
always always always want the
people talk about my son as a person
I do not like labels or for
Rafael for nobody
we always have to remember that the
people we are all always first
people
as well as
I expected things before I knew about their
condition for his life one day I gave myself
mind that those that your dreams and that
those expectations that I had for
Rafael did not have to change because of
your condition
I wanted to rafael my son my perfect
son had the possibility to learn
and study in inclusive spaces at
side of people whether or not they had
I do not accept his condition
I will never accept that he runs to spaces
segregated or excluding spaces I do not
I want my son to grow up already forgotten
we of the rest that we are running
well very fast super quickly leaving
those who run different behind
forgotten there I do not want that to
rafael I do not want that when he runs and
grow and become a man do not have the
opportunity to work as we have it
us and that we have to accept the
gifts that society gives me I want
that my son is a human being who can
defend yourself before life by taking the
control of your own life
Nobody steal your voice
when I discovered this family mother
empowered in which little by little I left
turning
one day
I arrived with my little son in my arms
little ones to a desk where behind
from him there was a doctor a doctor
disability specialist
I was happy to be able to find
someone I would be able to help
get my son forward
what this doctor saw was simply
and only his disability after
hear him talk I think three minutes
his conclusion was very emphatic
marta madam you do not accept the
condition of your child you do not accept the
disability of rafael
Obviously I get over it I do not remember that
it was a very bitter experience I did
but as this doctor believes that I am
unable to see my son as he is
because it tells me that it is
talking and the doctor told me with
medical words that better something like
a result of errors and things that
they should not have happened because
so I was not willing to
understand that his world was a world
different from what he would have if he did not have
disability
for me the disability was not what
the words of this doctor told me
for me my son was an equal human being
to any other but that when
faced in its conditions of agreement
to its characteristics to a world that
denied access rights and opportunities
there the disability arose and was born
disability was not something with which
my son came the something we did to him
the people to him when we respected him
what happened when we respected that
there are no rhythms or perfect forms
when we realize that each one
he has the right to walk to his own
rhythm
It hurt me so much to know that if my son did not
could the 9 find supports he was going to be
excluded that if my son could not be
express because he was going to be
abandoned invisibilized bothered me
so much to imagine that when my son
I would like to express myself and move around
world we started from the beginning of the
exclusion and invisibility was there
where was the disability and I did not
I was willing to accept it
time passed and then I recognized
that yes the doctor had something of
reason but I did not have it so I
she told me she was starting from one
principle but his words had
true
I do not accept and I will never accept the
disability that we do to Rafael the
What do you do to her?
the one that makes the world I’m not
willing to be robbed by anyone
I would like now
who will imagine that in this room all
we put on a costume
Whoever wants the mask that is
happen
can see it
behind that mask we are all
same
not between our eyes to the
shapes
let’s look
to dignity let’s look at the person the
label what you have do not stop having
does not matter
when rafael was about two years old and
months his dad and I wanted to take him to
the school like any child then
We made a list of schools that
we want to visit and we choose to go to
first we were not very happy to talk
with the school to tell us that
We were going to need to do and how
write it and all this
and when I told the director that
my son had a disability he closed my
door in the nose and I was in a hurry to
get me out of his school and I said lady
Well, here we do not know how to help
a child like yours
it is strong to know that the only thing they saw
those people was my son’s mask
from their prejudice they were unable to
see the human being who has the right to
education as we all have
that they were trying to point out in the
way for me to leave a school
segregated apart
that’s not right is not good for
rafael and it’s not good for anyone we have
to be able to see people
from your dignity and recognize in all
the same rights
when I was little
kindergarten 1st grade one day my dad who
is there in a photo with rafael one of my
dad told me something super important that
marked my life in a very profound way
my dad was a person who had been
because poor all his life he had
studied up to third grade of primary
that had suffered hunger there
suffered scorn and that had been
always labeled as poor
my dad said Marta remember what
what am i going to say
I want you never to feel more or less
that nobody wants that always mijita
always see people in the eyes
without feeling above anyone without
feel below anyone you have
dignity
do not let anyone take it from you
I expect the same for Rafael
I hope the garment is not less
that nobody
which is like any of us and
You have the right to live life between
same
he is rafael tomorrow he turns 5
I hope you guys
can see it beyond their eyes
torn beyond the difficult easy
that it can be for him to learn something
I hope they see it without prejudice without
masks without costumes without labels and
that are able to connect with the
heart with what makes us human to
everybody
I do not want to be seen as an angel
nor as a poor disabled person
I hope you can see him as well
that all people like
simply human thank you very much
point of turning my mom for the first
time
rafael the little one I was carrying in my
belly was a child that was very
desired I for a long time had
wanted to be normal and was super
eager to know
in the fourth month of pregnancy
I was so excited the doctor
the doctor in the fourth month of
fourth month he told me that my son were going to
be with dawn syndrome
he told me with sadness he told me with
a lot of thinking
for many people the diagnosis of
disability is a diagnosis that hurts
that weighs that should not happen
It hurt to know that they were talking about my son
of my beloved son
just calling him for his
malformations for their defects for their
irregularities for me my son was
perfect
nobody told me about dignity or life of
the one that we all have by the
simple fact of being alive
when the people who were close to me
he found out what was happening in my
pregnancy because people had me as
pity it hurt that I was
going through such a painful experience
I was in a spiral that made me
to be worse and worse worse and although
I always felt bad a moment later
I felt worse
I was not willing to let myself fall
I wanted my son to be seen not
as a disabled poor like the
people who were around told me
poor thing are going to be going to get to suffer
to have a bad time because that should not
happen to him because then what fault has
they told me
there were other people beside me who
they said something completely different
they said not you are lucky that father
that your son is going to be like that is a little angel
God chose you to make your mother by
something that he saw in you super special
they told me I was lucky because I
were going to do with the love syndrome the
happiness syndrome and my prize was going
to be always have a company of
eternal because also my son for his
condition was going to be a boy who was going to
be a child all of life
I did not want to be a mom nor a mistake nor
of an angel I wanted to be
rafael’s mom and the eyes that I used
to see them was what I wanted all of
other people were able to
find I did not want pity nor
privileges he just wanted to be his
mom
when people see only the
dawn syndrome the label the one
put here on the forehead and it would seem that
it’s a stigma that then costs a lot
remove
they ran the risk of forgetting that my
son was a human being like any
another perfect human being did not have enough
nothing did not lack anything so it was
perfect
when they spoke of him thus to
level it hurt a lot to be called
dawn to call him because of his condition
forgetting that he was rafael
always always always want the
people talk about my son as a person
I do not like labels or for
Rafael for nobody
we always have to remember that the
people we are all always first
people
as well as
I expected things before I knew about their
condition for his life one day I gave myself
mind that those that your dreams and that
those expectations that I had for
Rafael did not have to change because of
your condition
I wanted to rafael my son my perfect
son had the possibility to learn
and study in inclusive spaces at
side of people whether or not they had
I do not accept his condition
I will never accept that he runs to spaces
segregated or excluding spaces I do not
I want my son to grow up already forgotten
we of the rest that we are running
well very fast super quickly leaving
those who run different behind
forgotten there I do not want that to
rafael I do not want that when he runs and
grow and become a man do not have the
opportunity to work as we have it
us and that we have to accept the
gifts that society gives me I want
that my son is a human being who can
defend yourself before life by taking the
control of your own life
Nobody steal your voice
when I discovered this family mother
empowered in which little by little I left
turning
one day
I arrived with my little son in my arms
little ones to a desk where behind
from him there was a doctor a doctor
disability specialist
I was happy to be able to find
someone I would be able to help
get my son forward
what this doctor saw was simply
and only his disability after
hear him talk I think three minutes
his conclusion was very emphatic
marta madam you do not accept the
condition of your child you do not accept the
disability of rafael
Obviously I get over it I do not remember that
it was a very bitter experience I did
but as this doctor believes that I am
unable to see my son as he is
because it tells me that it is
talking and the doctor told me with
medical words that better something like
a result of errors and things that
they should not have happened because
so I was not willing to
understand that his world was a world
different from what he would have if he did not have
disability
for me the disability was not what
the words of this doctor told me
for me my son was an equal human being
to any other but that when
faced in its conditions of agreement
to its characteristics to a world that
denied access rights and opportunities
there the disability arose and was born
disability was not something with which
my son came the something we did to him
the people to him when we respected him
what happened when we respected that
there are no rhythms or perfect forms
when we realize that each one
he has the right to walk to his own
rhythm
It hurt me so much to know that if my son did not
could the 9 find supports he was going to be
excluded that if my son could not be
express because he was going to be
abandoned invisibilized bothered me
so much to imagine that when my son
I would like to express myself and move around
world we started from the beginning of the
exclusion and invisibility was there
where was the disability and I did not
I was willing to accept it
time passed and then I recognized
that yes the doctor had something of
reason but I did not have it so I
she told me she was starting from one
principle but his words had
true
I do not accept and I will never accept the
disability that we do to Rafael the
What do you do to her?
the one that makes the world I’m not
willing to be robbed by anyone
I would like now
who will imagine that in this room all
we put on a costume
Whoever wants the mask that is
happen
can see it
behind that mask we are all
same
not between our eyes to the
shapes
let’s look
to dignity let’s look at the person the
label what you have do not stop having
does not matter
when rafael was about two years old and
months his dad and I wanted to take him to
the school like any child then
We made a list of schools that
we want to visit and we choose to go to
first we were not very happy to talk
with the school to tell us that
We were going to need to do and how
write it and all this
and when I told the director that
my son had a disability he closed my
door in the nose and I was in a hurry to
get me out of his school and I said lady
Well, here we do not know how to help
a child like yours
it is strong to know that the only thing they saw
those people was my son’s mask
from their prejudice they were unable to
see the human being who has the right to
education as we all have
that they were trying to point out in the
way for me to leave a school
segregated apart
that’s not right is not good for
rafael and it’s not good for anyone we have
to be able to see people
from your dignity and recognize in all
the same rights
when I was little
kindergarten 1st grade one day my dad who
is there in a photo with rafael one of my
dad told me something super important that
marked my life in a very profound way
my dad was a person who had been
because poor all his life he had
studied up to third grade of primary
that had suffered hunger there
suffered scorn and that had been
always labeled as poor
my dad said Marta remember what
what am i going to say
I want you never to feel more or less
that nobody wants that always mijita
always see people in the eyes
without feeling above anyone without
feel below anyone you have
dignity
do not let anyone take it from you
I expect the same for Rafael
I hope the garment is not less
that nobody
which is like any of us and
You have the right to live life between
same
he is rafael tomorrow he turns 5
I hope you guys
can see it beyond their eyes
torn beyond the difficult easy
that it can be for him to learn something
I hope they see it without prejudice without
masks without costumes without labels and
that are able to connect with the
heart with what makes us human to
everybody
I do not want to be seen as an angel
nor as a poor disabled person
I hope you can see him as well
that all people like
simply human thank you very much
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