WEBVTT

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It takes a village to raise a child.

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So they say.

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Unless this child has special needs.

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This is the limit of this beautiful
African proverb that's said so much today.

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When it comes to this special motherhood,
this motherhood that nobody wants,

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that nobody sees,

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and we're all scared to talk about,

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we cross an important line,

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and on the other side of that line,
the village falls apart.

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According to the UN, one billion people
in the world have some type of deficiency.

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One billion out of 7.5 billion.

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Did you know this?

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I didn't know.

NOTE Paragraph

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Five years ago, I didn't know
many of the things I know today,

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for the simple reason
that I didn't need to know.

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I never wanted to be a mother.

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I never thought I was capable
of raising another human being,

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being responsible for teaching them
all that I, myself, didn't know.

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I never thought I was good enough
for the godlike position of mother.

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But life doesn't come easily for me.

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I was 22 years old, had no desire,
and I was pregnant.

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I felt my life's most powerful
connection begin.

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During pregnancy, my partner
and I exchanged many thoughts.

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We had many doubts
about who our child would be.

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We debated everything, all the taboos
that we found along the way.

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We talked about affection,
donation, surrender.

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We talked about an equal
and feminist education.

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We thought about how to approach issues
like sexuality, race, and privilege.

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We thought, too, about what we'd do

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if this boy who was arriving in the world

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wanted to be a circus performer,

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or had a different 
political opinion than ours,

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or liked country music.

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We thought about diversity,
but not comprehensively.

NOTE Paragraph

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We never thought a different challenge
was about to happen to us,

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that would arrive so soon,
and that we'd almost lose João.

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I always wanted to be sure
my son would have love and space,

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but I didn't know what was to come.

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So, when João was 20 months old -

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by then he was sunshine, my sunshine,

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and he ran everywhere, talked plenty,
and was always up to something -

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his body collapsed, out of the blue.

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A very serious and violent illness,
that today we know about,

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caught us off guard and unprepared.

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On Sunday, we were in the park,
jumping on a trampoline and having fun.

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On Monday, we were entering the hospital,

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where we would spend
71 days before leaving.

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I still remember how it felt
being taken to the intensive care unit,

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and, at that moment, knowing
our lives would never be the same.

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João was diagnosed with a rare disease,
and he suffered a major stroke.

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It's difficult to talk about it even today

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because these are unexpected things

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that happen in our lives.

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The diagnosis seemed like science fiction.

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The name of the illness is SHUa,
and I'd never heard of it.

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It's an often fatal
and extremely rare disease

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that, up until 10 years ago,
had a 100% mortality rate.

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And this is what was happening
to my son: He was dying.

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During the 71 days, on many
of those 71 days, he was dying.

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Because of this, when he survived,

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the repercussions of the stroke
were the part of the problem

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I was ready to face.

NOTE Paragraph

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That's how we entered the totally
unknown world of special needs,

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and João became part of this huge
minority of 1 billion people.

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This was how the wheelchair
became his way of navigating the world,

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and how I learned to read looks
and gestures, and to rely less on words.

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The months when we came
back home were devastating.

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João couldn't control his body anymore -

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he couldn't sit, couldn't talk,
couldn't eat, couldn't walk.

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The improvements
were small and slow coming.

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Time had another rhythm,
and I had to relearn how to dance.

NOTE Paragraph

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It really hit home for me
going to the school,

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when, in a parent meeting
to explain João's entrance into the class,

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a mother ignored my presence,
turned to the teacher, and said,

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"My son is still too small
to have to live with this problem."

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And "this problem" was João.

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At two years of age,
my son stopped being a boy

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and turned into a problem.

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He understood what it's like
to be unwanted too soon.

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One day, a doctor told me,
"The brain is sacred.

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There's still a whole life ahead,
thousands of possibilities."

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Amidst so many pessimistic diagnoses,
our fears and insecurities,

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and such a hard reencounter with society,

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I don't know where we got
so much strength from,

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but I know one thing
about words spoken with affection -

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they have the power
to echo inside us forever.

NOTE Paragraph

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And so five years went by.

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Five years of intense
rehabilitation treatments

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that demanded much effort,
much study, and much courage.

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Five years of watching João try,

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at his own pace,

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to begin communicating
with his own body again

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and to overcome all the barriers

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they said, for him, would be impossible.

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He learned again to sit.

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He freed his little hands again -
hands, today, that love to draw.

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He found again the pathway of words -

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words that are still few today
but that changed our world.

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Each month, he was able
to stand a few milliseconds more.

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He went into first grade
at the usual time.

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And this loving, courageous,
and very intelligent boy

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makes everything seem easy

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when it really isn't.

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He makes it seem easy
because João has a very natural way

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of letting the pain come
and not embracing it,

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and he has the most honest joy
I've ever known.

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And it's his modus operandi
to choose to be in the world.

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Every time that someone
describes João's case as a miracle,

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I remember that this miracle was,
and still is, made from much sweat.

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I speak, softly in his ear,

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to tell him how proud I am
of the boy that he's become.

NOTE Paragraph

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Some months back,

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I started studying
to write a book about inclusion.

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I started to interview other mothers
and professionals in the area, educators.

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And in these interviews, an issue came up,
over and over, that bothers me -

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the solitude of mothers
who are called "special."

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Not that I hadn't experienced
this solitude before, quite the contrary.

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I think that we feel it so much
that we get used to it.

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But I was ignoring it.

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That old thing of sweeping
our problems under the carpet

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and thinking about them later,

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in some other time,
who knows, maybe tomorrow.

NOTE Paragraph

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It takes an entire village
to raise a child,

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but in our cases, most of the time,

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what we have are friends
who don't want to get close,

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family members who are afraid
and don't want to get involved,

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uncles who will never take this child
for a Saturday afternoon walk,

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mothers of classmates
who don't make sleepover invitations,

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birthday invitations that don't come,

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grandparents who say they're too old,

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fathers who are present but not much -
and fathers who go away.

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Looking closely, the truth
is that, many times,

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the mother is the entire
village for this child,

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and she'll try to do it all
with all her strength.

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She'll make demands upon herself
and attempt to perform all those roles -

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and she'll invariably fail.

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She has no chance.

NOTE Paragraph

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Once, I received an invitation
for João to attend

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a birthday party for one
of his classmates, a pajama party,

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the kind where they have little tents
where children sleep at the party.

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I froze ...

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because I already knew that, for my son,

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invitations are different.

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I delayed days before
responding to the mother,

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letting the confirmation deadline pass.

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Then two days before the party,
I looked her up.

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I sent her a message,

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"Listen, I'll ... I think
that I'll bring João,

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at least so he can spend
three short hours with his classmates,

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so that he can be with the friends
in a celebration moment,

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and later, I'll come pick him up.

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He won't spend the night, OK?"

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She responded to me,

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"If you agree, I'd like to try
letting him spend the night."

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I was shocked because I
didn't expect this response.

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How many mothers
in her place would be willing?

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We decided together to try.

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And João didn't come home that Saturday.

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He said that he really enjoyed it;
he was happy, and very rowdy.

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She said he ate lots of hot dogs,

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and that, for fun,
he knocked down various tents,

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he rolled into secret meetings
of girls without being asked,

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and he was the last one to sleep ...

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happy.

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That night, I felt like a normal mother.

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Glued to my cell phone,
I was awake the whole night,

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wondering if some natural phenomenon
had silenced my cell phone,

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but it was normal.

NOTE Paragraph

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This day taught me many things:

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about the normality of my own son,

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about how fears can keep us
from having important experiences,

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about how my courage
and the courage of others,

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that, when they meet, can be so powerful,

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and about having a support network

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willing to help.

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Inclusion seems to be a difficult word.

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It's a big movement that fits big spheres

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and that's taught in complicated books.

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But the truth is that change
fits in the hands of us all -

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in the choice of small friendly gestures,

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in our empathy for others,

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in the opening up to diversity as a whole.

NOTE Paragraph

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We need to change our point of view

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and understand that places
can be deficient,

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ideas can be deficient,

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marketing, planning,
and design can be deficient.

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But not people.

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And that we can overcome
obvious barriers driven by affection.

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(Sigh)

NOTE Paragraph

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People ask me, "Where do I start?"

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Did you look at your sidewalk today?

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Would you be able to cross it
if you were in a wheelchair?

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Don't use the special parking places -

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not for five minutes,
not for five seconds.

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They weren't made for you.

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They were made
for 1 billion people, remember?

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Ask at your child's school
about their position regarding inclusion.

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A school that isn't able to consider

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the glaring differences of my son,

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won't have the sensibility to look
at the more subtle differences of yours.

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My invitation goes further.

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Be a village, be a support network.

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You know that friend
who has a child with cerebral palsy?

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Call her up today.

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Ask how she is and be willing to listen.

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Seems simple, but it rarely happens to me.

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Or that mother from your child's class
whose child has a rare disease?

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Invite them to the playground.

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Put the child on your lap,
try to look like it's normal.

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Sometimes, it's not so bad.

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It's only different.

NOTE Paragraph

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Inclusion isn't a favor.

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It's a process of improving
the world for everyone.

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It's understanding diversity
as a strength, not a weakness.

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It's looking for solutions for teaching,
for traffic, and for living together

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that embrace everyone as they are.

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Respect that underestimates
isn't respect, it's pity.

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Inclusion, for me, is looking
for others' differences

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and respecting their differences,

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looking equal to equal.

NOTE Paragraph

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We've overcome many barriers in our story.

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We've overcome many
that dehumanized João,

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that took him out
of his little box of perfection,

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of beauty and acceptability.

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to reduce him to a wheelchair
or to a problem.

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By the way, please,
never reduce a person to a problem.

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You are taking the risk
that this person may believe it.

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On the other hand, in contrast,

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these same barriers made us grow a lot.

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When we were dehumanized,
we became much more humane.

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When I received such hard looks,

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I could look at others with more candor.

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When we overcame improbable
and impossible barriers,

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I could find genuine happiness
because I didn't need to hide the pain.

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We feel fragile when we need to ask,

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but the truth is every mother
needs a support network.

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And it takes a whole village
to raise a child.

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Every child.

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Even that child who says
"I love you" with just a look.

NOTE Paragraph

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I want to share something
with you now, to finish up.

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It's been five months since João
was able to call me Mom again -

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Mama, actually.

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I spent a lot of time
without this word, without this place.

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And now we're on a trip,
one of our many trips,

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and he gave me this gift
that I want to share with you.

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(Video)

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Lau Patrón: I ...

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João: I...

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LP: lo ...

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J: lo ...

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LP: ve...

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J: ve...

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LP: you...

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J: Ma.

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(Kisses)

NOTE Paragraph

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(On stage) LP: We are the diversity.

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Be the village. Be the support network.

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Thank you.

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(Applause)

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(Cheers)