0:00:20.501,0:00:23.696
It takes a village to raise a child.

0:00:23.969,0:00:25.207
So they say.

0:00:25.728,0:00:28.899
Unless this child has special needs.

0:00:29.459,0:00:33.899
This is the limit of this beautiful[br]African proverb that's said so much today.

0:00:34.616,0:00:39.880
When it comes to this special motherhood,[br]this motherhood that nobody wants,

0:00:40.601,0:00:41.805
that nobody sees,

0:00:41.805,0:00:44.349
and we're all scared to talk about,

0:00:44.349,0:00:46.465
we cross an important line,

0:00:46.465,0:00:49.865
and on the other side of that line,[br]the village falls apart.

0:00:50.702,0:00:55.260
According to the UN, one billion people[br]in the world have some type of deficiency.

0:00:55.830,0:00:59.829
One billion out of 7.5 billion.

0:01:00.501,0:01:02.031
Did you know this?

0:01:02.956,0:01:04.211
I didn't know.

0:01:04.951,0:01:08.601
Five years ago, I didn't know[br]many of the things I know today,

0:01:08.601,0:01:12.290
for the simple reason[br]that I didn't need to know.

0:01:13.659,0:01:15.142
I never wanted to be a mother.

0:01:15.382,0:01:18.272
I never thought I was capable[br]of raising another human being,

0:01:18.272,0:01:21.936
being responsible for teaching them[br]all that I, myself, didn't know.

0:01:22.538,0:01:26.221
I never thought I was good enough[br]for the godlike position of mother.

0:01:26.761,0:01:28.942
But life doesn't come easily for me.

0:01:29.681,0:01:33.277
I was 22 years old, had no desire,[br]and I was pregnant.

0:01:33.971,0:01:37.772
I felt my life's most powerful[br]connection begin.

0:01:39.472,0:01:42.972
During pregnancy, my partner[br]and I exchanged many thoughts.

0:01:43.252,0:01:46.116
We had many doubts[br]about who our child would be.

0:01:46.840,0:01:50.373
We debated everything, all the taboos[br]that we found along the way.

0:01:50.911,0:01:54.869
We talked about affection,[br]donation, surrender.

0:01:55.433,0:01:58.408
We talked about an equal[br]and feminist education.

0:01:58.949,0:02:04.906
We thought about how to approach issues[br]like sexuality, race, and privilege.

0:02:07.154,0:02:09.151
We thought, too, about what we'd do

0:02:09.151,0:02:12.249
if this boy who was arriving in the world

0:02:12.249,0:02:14.465
wanted to be a circus performer,

0:02:14.913,0:02:17.989
or had a different [br]political opinion than ours,

0:02:17.989,0:02:20.071
or liked country music.

0:02:22.696,0:02:26.761
We thought about diversity,[br]but not comprehensively.

0:02:27.191,0:02:31.871
We never thought a different challenge[br]was about to happen to us,

0:02:31.871,0:02:35.416
that would arrive so soon,[br]and that we'd almost lose João.

0:02:35.992,0:02:40.432
I always wanted to be sure[br]my son would have love and space,

0:02:41.091,0:02:43.390
but I didn't know what was to come.

0:02:44.592,0:02:47.138
So, when João was 20 months old -

0:02:47.586,0:02:50.689
by then he was sunshine, my sunshine,

0:02:50.990,0:02:55.688
and he ran everywhere, talked plenty,[br]and was always up to something -

0:02:56.321,0:02:58.581
his body collapsed, out of the blue.

0:02:59.830,0:03:04.090
A very serious and violent illness,[br]that today we know about,

0:03:04.090,0:03:06.829
caught us off guard and unprepared.

0:03:07.238,0:03:11.849
On Sunday, we were in the park,[br]jumping on a trampoline and having fun.

0:03:11.863,0:03:14.542
On Monday, we were entering the hospital,

0:03:14.542,0:03:17.511
where we would spend[br]71 days before leaving.

0:03:18.973,0:03:23.341
I still remember how it felt[br]being taken to the intensive care unit,

0:03:23.619,0:03:28.087
and, at that moment, knowing[br]our lives would never be the same.

0:03:28.938,0:03:33.408
João was diagnosed with a rare disease,[br]and he suffered a major stroke.

0:03:44.654,0:03:47.553
It's difficult to talk about it even today

0:03:47.553,0:03:49.860
because these are unexpected things

0:03:49.860,0:03:51.762
that happen in our lives.

0:03:51.762,0:03:54.162
The diagnosis seemed like science fiction.

0:03:54.162,0:03:57.002
The name of the illness is SHUa,[br]and I'd never heard of it.

0:03:57.232,0:03:59.551
It's an often fatal[br]and extremely rare disease

0:03:59.962,0:04:03.581
that, up until 10 years ago,[br]had a 100% mortality rate.

0:04:03.981,0:04:07.391
And this is what was happening[br]to my son: He was dying.

0:04:07.641,0:04:11.477
During the 71 days, on many[br]of those 71 days, he was dying.

0:04:12.001,0:04:14.509
Because of this, when he survived,

0:04:16.230,0:04:19.069
the repercussions of the stroke[br]were the part of the problem

0:04:19.069,0:04:21.041
I was ready to face.

0:04:22.081,0:04:26.421
That's how we entered the totally[br]unknown world of special needs,

0:04:26.529,0:04:32.248
and João became part of this huge[br]minority of 1 billion people.

0:04:32.951,0:04:36.534
This was how the wheelchair[br]became his way of navigating the world,

0:04:36.534,0:04:41.137
and how I learned to read looks[br]and gestures, and to rely less on words.

0:04:42.876,0:04:45.332
The months when we came[br]back home were devastating.

0:04:45.876,0:04:48.201
João couldn't control his body anymore -

0:04:48.419,0:04:52.573
he couldn't sit, couldn't talk,[br]couldn't eat, couldn't walk.

0:04:52.948,0:04:56.720
The improvements[br]were small and slow coming.

0:04:57.170,0:05:00.978
Time had another rhythm,[br]and I had to relearn how to dance.

0:05:01.482,0:05:04.230
It really hit home for me[br]going to the school,

0:05:04.230,0:05:08.481
when, in a parent meeting[br]to explain João's entrance into the class,

0:05:08.481,0:05:13.171
a mother ignored my presence,[br]turned to the teacher, and said,

0:05:13.171,0:05:16.847
"My son is still too small[br]to have to live with this problem."

0:05:17.091,0:05:19.512
And "this problem" was João.

0:05:20.592,0:05:23.312
At two years of age,[br]my son stopped being a boy

0:05:23.312,0:05:24.621
and turned into a problem.

0:05:25.132,0:05:29.231
He understood what it's like[br]to be unwanted too soon.

0:05:32.268,0:05:35.573
One day, a doctor told me,[br]"The brain is sacred.

0:05:36.013,0:05:39.641
There's still a whole life ahead,[br]thousands of possibilities."

0:05:41.163,0:05:45.553
Amidst so many pessimistic diagnoses,[br]our fears and insecurities,

0:05:45.553,0:05:48.383
and such a hard reencounter with society,

0:05:48.383,0:05:51.592
I don't know where we got[br]so much strength from,

0:05:51.804,0:05:55.423
but I know one thing[br]about words spoken with affection -

0:05:55.423,0:06:00.194
they have the power[br]to echo inside us forever.

0:06:01.339,0:06:02.903
And so five years went by.

0:06:03.737,0:06:06.994
Five years of intense[br]rehabilitation treatments

0:06:06.994,0:06:11.123
that demanded much effort,[br]much study, and much courage.

0:06:11.600,0:06:14.794
Five years of watching João try,

0:06:14.794,0:06:16.042
at his own pace,

0:06:16.042,0:06:18.350
to begin communicating[br]with his own body again

0:06:18.821,0:06:21.451
and to overcome all the barriers

0:06:21.451,0:06:24.073
they said, for him, would be impossible.

0:06:24.650,0:06:26.000
He learned again to sit.

0:06:26.728,0:06:30.542
He freed his little hands again -[br]hands, today, that love to draw.

0:06:31.419,0:06:33.961
He found again the pathway of words -

0:06:33.961,0:06:37.002
words that are still few today[br]but that changed our world.

0:06:37.890,0:06:41.700
Each month, he was able[br]to stand a few milliseconds more.

0:06:42.231,0:06:44.752
He went into first grade[br]at the usual time.

0:06:44.752,0:06:49.853
And this loving, courageous,[br]and very intelligent boy

0:06:49.853,0:06:52.023
makes everything seem easy

0:06:52.023,0:06:53.382
when it really isn't.

0:06:53.811,0:06:57.291
He makes it seem easy[br]because João has a very natural way

0:06:57.291,0:07:00.332
of letting the pain come[br]and not embracing it,

0:07:01.118,0:07:03.634
and he has the most honest joy[br]I've ever known.

0:07:03.969,0:07:07.442
And it's his modus operandi[br]to choose to be in the world.

0:07:07.813,0:07:11.482
Every time that someone[br]describes João's case as a miracle,

0:07:11.482,0:07:17.013
I remember that this miracle was,[br]and still is, made from much sweat.

0:07:17.353,0:07:18.651
I speak, softly in his ear,

0:07:18.651,0:07:21.323
to tell him how proud I am[br]of the boy that he's become.

0:07:23.770,0:07:25.032
Some months back,

0:07:25.032,0:07:29.039
I started studying[br]to write a book about inclusion.

0:07:29.539,0:07:33.438
I started to interview other mothers[br]and professionals in the area, educators.

0:07:33.960,0:07:38.211
And in these interviews, an issue came up,[br]over and over, that bothers me -

0:07:38.671,0:07:41.392
the solitude of mothers[br]who are called "special."

0:07:42.260,0:07:46.179
Not that I hadn't experienced[br]this solitude before, quite the contrary.

0:07:46.179,0:07:49.139
I think that we feel it so much[br]that we get used to it.

0:07:49.734,0:07:51.632
But I was ignoring it.

0:07:51.632,0:07:55.271
That old thing of sweeping[br]our problems under the carpet

0:07:55.271,0:07:56.698
and thinking about them later,

0:07:56.698,0:07:59.671
in some other time,[br]who knows, maybe tomorrow.

0:07:59.801,0:08:02.463
It takes an entire village[br]to raise a child,

0:08:02.463,0:08:05.271
but in our cases, most of the time,

0:08:05.271,0:08:08.503
what we have are friends[br]who don't want to get close,

0:08:08.503,0:08:11.461
family members who are afraid[br]and don't want to get involved,

0:08:11.461,0:08:16.542
uncles who will never take this child[br]for a Saturday afternoon walk,

0:08:18.206,0:08:20.963
mothers of classmates[br]who don't make sleepover invitations,

0:08:20.963,0:08:23.621
birthday invitations that don't come,

0:08:24.257,0:08:26.477
grandparents who say they're too old,

0:08:26.909,0:08:30.433
fathers who are present but not much -[br]and fathers who go away.

0:08:31.623,0:08:34.872
Looking closely, the truth[br]is that, many times,

0:08:34.872,0:08:37.563
the mother is the entire[br]village for this child,

0:08:38.343,0:08:41.563
and she'll try to do it all[br]with all her strength.

0:08:41.563,0:08:46.022
She'll make demands upon herself[br]and attempt to perform all those roles -

0:08:46.022,0:08:49.142
and she'll invariably fail.

0:08:49.442,0:08:51.233
She has no chance.

0:08:52.861,0:08:55.158
Once, I received an invitation[br]for João to attend

0:08:55.158,0:08:57.931
a birthday party for one[br]of his classmates, a pajama party,

0:08:57.931,0:09:01.610
the kind where they have little tents[br]where children sleep at the party.

0:09:02.112,0:09:03.191
I froze ...

0:09:03.712,0:09:05.807
because I already knew that, for my son,

0:09:05.807,0:09:07.692
invitations are different.

0:09:08.693,0:09:10.960
I delayed days before[br]responding to the mother,

0:09:11.260,0:09:14.701
letting the confirmation deadline pass.

0:09:15.442,0:09:17.899
Then two days before the party,[br]I looked her up.

0:09:17.899,0:09:19.312
I sent her a message,

0:09:19.312,0:09:22.700
"Listen, I'll ... I think[br]that I'll bring João,

0:09:22.700,0:09:26.040
at least so he can spend[br]three short hours with his classmates,

0:09:26.040,0:09:28.944
so that he can be with the friends[br]in a celebration moment,

0:09:28.944,0:09:30.561
and later, I'll come pick him up.

0:09:30.561,0:09:32.361
He won't spend the night, OK?"

0:09:33.012,0:09:35.201
She responded to me,

0:09:35.201,0:09:38.311
"If you agree, I'd like to try[br]letting him spend the night."

0:09:39.562,0:09:42.902
I was shocked because I[br]didn't expect this response.

0:09:43.402,0:09:46.493
How many mothers[br]in her place would be willing?

0:09:47.722,0:09:49.591
We decided together to try.

0:09:50.194,0:09:52.332
And João didn't come home that Saturday.

0:09:53.732,0:09:57.642
He said that he really enjoyed it;[br]he was happy, and very rowdy.

0:09:58.240,0:10:00.391
She said he ate lots of hot dogs,

0:10:00.391,0:10:02.802
and that, for fun,[br]he knocked down various tents,

0:10:03.124,0:10:07.774
he rolled into secret meetings[br]of girls without being asked,

0:10:08.612,0:10:10.582
and he was the last one to sleep ...

0:10:10.582,0:10:11.761
happy.

0:10:13.200,0:10:17.159
That night, I felt like a normal mother.

0:10:18.421,0:10:20.940
Glued to my cell phone,[br]I was awake the whole night,

0:10:20.940,0:10:25.581
wondering if some natural phenomenon[br]had silenced my cell phone,

0:10:25.825,0:10:27.029
but it was normal.

0:10:27.846,0:10:29.699
This day taught me many things:

0:10:30.479,0:10:33.157
about the normality of my own son,

0:10:33.157,0:10:36.590
about how fears can keep us[br]from having important experiences,

0:10:37.011,0:10:39.222
about how my courage[br]and the courage of others,

0:10:39.222,0:10:42.148
that, when they meet, can be so powerful,

0:10:42.261,0:10:43.951
and about having a support network

0:10:44.051,0:10:46.391
willing to help.

0:10:47.399,0:10:49.784
Inclusion seems to be a difficult word.

0:10:51.065,0:10:54.733
It's a big movement that fits big spheres

0:10:55.130,0:10:57.004
and that's taught in complicated books.

0:10:57.457,0:11:00.370
But the truth is that change[br]fits in the hands of us all -

0:11:01.130,0:11:03.972
in the choice of small friendly gestures,

0:11:03.972,0:11:06.139
in our empathy for others,

0:11:06.139,0:11:09.131
in the opening up to diversity as a whole.

0:11:10.058,0:11:12.342
We need to change our point of view

0:11:12.342,0:11:15.708
and understand that places[br]can be deficient,

0:11:15.708,0:11:17.518
ideas can be deficient,

0:11:17.518,0:11:20.949
marketing, planning,[br]and design can be deficient.

0:11:21.198,0:11:22.371
But not people.

0:11:22.867,0:11:26.218
And that we can overcome[br]obvious barriers driven by affection.

0:11:29.839,0:11:31.249
(Sigh)

0:11:31.801,0:11:34.812
People ask me, "Where do I start?"

0:11:35.089,0:11:36.989
Did you look at your sidewalk today?

0:11:37.996,0:11:41.857
Would you be able to cross it[br]if you were in a wheelchair?

0:11:42.876,0:11:44.706
Don't use the special parking places -

0:11:45.329,0:11:48.442
not for five minutes,[br]not for five seconds.

0:11:48.442,0:11:50.726
They weren't made for you.

0:11:51.027,0:11:53.746
They were made[br]for 1 billion people, remember?

0:11:54.948,0:11:58.615
Ask at your child's school[br]about their position regarding inclusion.

0:11:58.986,0:12:01.578
A school that isn't able to consider

0:12:01.578,0:12:04.253
the glaring differences of my son,

0:12:04.253,0:12:07.784
won't have the sensibility to look[br]at the more subtle differences of yours.

0:12:10.062,0:12:11.481
My invitation goes further.

0:12:11.831,0:12:14.364
Be a village, be a support network.

0:12:14.973,0:12:17.691
You know that friend[br]who has a child with cerebral palsy?

0:12:17.752,0:12:19.393
Call her up today.

0:12:19.393,0:12:22.410
Ask how she is and be willing to listen.

0:12:23.193,0:12:26.028
Seems simple, but it rarely happens to me.

0:12:26.751,0:12:30.081
Or that mother from your child's class[br]whose child has a rare disease?

0:12:30.414,0:12:31.952
Invite them to the playground.

0:12:31.952,0:12:35.762
Put the child on your lap,[br]try to look like it's normal.

0:12:36.361,0:12:37.711
Sometimes, it's not so bad.

0:12:38.202,0:12:39.580
It's only different.

0:12:40.353,0:12:42.330
Inclusion isn't a favor.

0:12:42.330,0:12:45.432
It's a process of improving[br]the world for everyone.

0:12:45.732,0:12:49.211
It's understanding diversity[br]as a strength, not a weakness.

0:12:54.651,0:12:59.959
It's looking for solutions for teaching,[br]for traffic, and for living together

0:13:00.480,0:13:03.681
that embrace everyone as they are.

0:13:04.999,0:13:08.901
Respect that underestimates[br]isn't respect, it's pity.

0:13:09.220,0:13:13.061
Inclusion, for me, is looking[br]for others' differences

0:13:13.061,0:13:15.270
and respecting their differences,

0:13:15.527,0:13:17.070
looking equal to equal.

0:13:18.108,0:13:20.850
We've overcome many barriers in our story.

0:13:21.337,0:13:25.159
We've overcome many[br]that dehumanized João,

0:13:25.159,0:13:27.548
that took him out[br]of his little box of perfection,

0:13:27.548,0:13:30.220
of beauty and acceptability.

0:13:30.303,0:13:33.301
to reduce him to a wheelchair[br]or to a problem.

0:13:33.469,0:13:39.379
By the way, please,[br]never reduce a person to a problem.

0:13:40.347,0:13:43.126
You are taking the risk[br]that this person may believe it.

0:13:44.178,0:13:45.948
On the other hand, in contrast,

0:13:45.948,0:13:49.261
these same barriers made us grow a lot.

0:13:49.638,0:13:52.987
When we were dehumanized,[br]we became much more humane.

0:13:53.608,0:13:56.606
When I received such hard looks,

0:13:56.606,0:13:59.424
I could look at others with more candor.

0:13:59.646,0:14:03.158
When we overcame improbable[br]and impossible barriers,

0:14:03.158,0:14:07.254
I could find genuine happiness[br]because I didn't need to hide the pain.

0:14:09.189,0:14:11.516
We feel fragile when we need to ask,

0:14:11.516,0:14:14.325
but the truth is every mother[br]needs a support network.

0:14:16.163,0:14:19.231
And it takes a whole village[br]to raise a child.

0:14:19.231,0:14:20.781
Every child.

0:14:21.011,0:14:24.479
Even that child who says[br]"I love you" with just a look.

0:14:25.843,0:14:28.948
I want to share something[br]with you now, to finish up.

0:14:29.396,0:14:32.769
It's been five months since João[br]was able to call me Mom again -

0:14:32.769,0:14:34.133
Mama, actually.

0:14:34.812,0:14:37.771
I spent a lot of time[br]without this word, without this place.

0:14:38.397,0:14:41.846
And now we're on a trip,[br]one of our many trips,

0:14:41.846,0:14:44.948
and he gave me this gift[br]that I want to share with you.

0:14:45.646,0:14:46.646
(Video)

0:14:47.604,0:14:48.734
Lau Patrón: I ...

0:14:49.548,0:14:50.548
João: I...

0:14:51.213,0:14:52.213
LP: lo ...

0:14:52.313,0:14:53.347
J: lo ...

0:14:53.412,0:14:54.413
LP: ve...

0:14:54.443,0:14:55.443
J: ve...

0:14:55.686,0:14:56.686
LP: you...

0:14:56.713,0:14:57.713
J: Ma.

0:14:58.107,0:14:59.957
(Kisses)

0:15:00.861,0:15:02.815
(On stage) LP: We are the diversity.

0:15:03.135,0:15:05.737
Be the village. Be the support network.

0:15:06.107,0:15:07.299
Thank you.

0:15:07.299,0:15:09.433
(Applause)

0:15:09.433,0:15:11.440
(Cheers)