Translator: David DeRuwe Reviewer: Raissa Mendes It takes a village to raise a child. So they say. Unless this child has special needs.
This is the limit of this beautiful African proverb that's said so much today. When it comes to this special motherhood, this motherhood that nobody wants, that nobody sees, and we're all scared to talk about, we cross an important line, and on the other side of that line, the village falls apart. According to the UN, one billion people in the world have some type of deficiency.
One billion out of 7. 5 billion. Did you know this?
I didn't know. Five years ago, I didn't know many of the things I know today, for the simple reason that I didn't need to know. I never wanted to be a mother.
I never thought I was capable of raising another human being, being responsible for teaching them all that I, myself, didn't know. I never thought I was good enough for the godlike position of mother. But life doesn't come easily for me.
I was 22 years old, had no desire, and I was pregnant. I felt my life's most powerful connection begin. During pregnancy, my partner and I exchanged many thoughts.
We had many doubts about who our child would be. We debated everything, all the taboos that we found along the way. We talked about affection, donation, surrender.
We talked about an equal and feminist education. We thought about how to approach issues like sexuality, race, and privilege. We thought, too, about what we'd do if this boy who was arriving in the world wanted to be a circus performer, or had a different political opinion than ours, or liked country music.
We thought about diversity, but not comprehensively. We never thought a different challenge was about to happen to us, that would arrive so soon, and that we'd almost lose João. I always wanted to be sure my son would have love and space, but I didn't know what was to come.
So, when João was 20 months old - by then he was sunshine, my sunshine, and he ran everywhere, talked plenty, and was always up to something - his body collapsed, out of the blue. A very serious and violent illness, that today we know about, caught us off guard and unprepared. On Sunday, we were in the park, jumping on a trampoline and having fun.
On Monday, we were entering the hospital, where we would spend 71 days before leaving. I still remember how it felt being taken to the intensive care unit, and, at that moment, knowing our lives would never be the same. João was diagnosed with a rare disease, and he suffered a major stroke.
It's difficult to talk about it even today because these are unexpected things that happen in our lives. The diagnosis seemed like science fiction. The name of the illness is SHUa, and I'd never heard of it.
It's an often fatal and extremely rare disease that, up until 10 years ago, had a 100% mortality rate. And this is what was happening to my son: He was dying. During the 71 days, on many of those 71 days, he was dying.
Because of this, when he survived, the repercussions of the stroke were the part of the problem I was ready to face. That's how we entered the totally unknown world of special needs, and João became part of this huge minority of 1 billion people. This was how the wheelchair became his way of navigating the world, and how I learned to read looks and gestures, and to rely less on words.
The months when we came back home were devastating. João couldn't control his body anymore - he couldn't sit, couldn't talk, couldn't eat, couldn't walk. The improvements were small and slow coming.
Time had another rhythm, and I had to relearn how to dance. It really hit home for me going to the school, when, in a parent meeting to explain João's entrance into the class, a mother ignored my presence, turned to the teacher, and said, "My son is still too small to have to live with this problem. " And "this problem" was João.
At two years of age, my son stopped being a boy and turned into a problem. He understood what it's like to be unwanted too soon. One day, a doctor told me, "The brain is sacred.
There's still a whole life ahead, thousands of possibilities. " Amidst so many pessimistic diagnoses, our fears and insecurities, and such a hard reencounter with society, I don't know where we got so much strength from, but I know one thing about words spoken with affection - they have the power to echo inside us forever. And so five years went by.
Five years of intense rehabilitation treatments that demanded much effort, much study, and much courage. Five years of watching João try, at his own pace, to begin communicating with his own body again and to overcome all the barriers they said, for him, would be impossible. He learned again to sit.
He freed his little hands again - hands, today, that love to draw. He found again the pathway of words - words that are still few today but that changed our world. Each month, he was able to stand a few milliseconds more.
He went into first grade at the usual time. And this loving, courageous, and very intelligent boy makes everything seem easy when it really isn't. He makes it seem easy because João has a very natural way of letting the pain come and not embracing it, and he has the most honest joy I've ever known.
And it's his modus operandi to choose to be in the world. Every time that someone describes João's case as a miracle, I remember that this miracle was, and still is, made from much sweat. I speak, softly in his ear, to tell him how proud I am of the boy that he's become.
Some months back, I started studying to write a book about inclusion. I started to interview other mothers and professionals in the area, educators. And in these interviews, an issue came up, over and over, that bothers me - the solitude of mothers who are called "special.
" Not that I hadn't experienced this solitude before, quite the contrary. I think that we feel it so much that we get used to it. But I was ignoring it.
That old thing of sweeping our problems under the carpet and thinking about them later, in some other time, who knows, maybe tomorrow. It takes an entire village to raise a child, but in our cases, most of the time, what we have are friends who don't want to get close, family members who are afraid and don't want to get involved, uncles who will never take this child for a Saturday afternoon walk, mothers of classmates who don't make sleepover invitations, birthday invitations that don't come, grandparents who say they're too old, fathers who are present but not much - and fathers who go away. Looking closely, the truth is that, many times, the mother is the entire village for this child, and she'll try to do it all with all her strength.
She'll make demands upon herself and attempt to perform all those roles - and she'll invariably fail. She has no chance. Once, I received an invitation for João to attend a birthday party for one of his classmates, a pajama party, the kind where they have little tents where children sleep at the party.
I froze . . .
because I already knew that, for my son, invitations are different. I delayed days before responding to the mother, letting the confirmation deadline pass. Then two days before the party, I looked her up.
I sent her a message, "Listen, I'll . . .
I think that I'll bring João, at least so he can spend three short hours with his classmates, so that he can be with the friends in a celebration moment, and later, I'll come pick him up. He won't spend the night, OK? " She responded to me, "If you agree, I'd like to try letting him spend the night.
" I was shocked because I didn't expect this response. How many mothers in her place would be willing? We decided together to try.
And João didn't come home that Saturday. He said that he really enjoyed it; he was happy, and very rowdy. She said he ate lots of hot dogs, and that, for fun, he knocked down various tents, he rolled into secret meetings of girls without being asked, and he was the last one to sleep .
. . happy.
That night, I felt like a normal mother. Glued to my cell phone, I was awake the whole night, wondering if some natural phenomenon had silenced my cell phone, but it was normal. This day taught me many things: about the normality of my own son, about how fears can keep us from having important experiences, about how my courage and the courage of others, that, when they meet, can be so powerful, and about having a support network willing to help.
Inclusion seems to be a difficult word. It's a big movement that fits big spheres and that's taught in complicated books. But the truth is that change fits in the hands of us all - in the choice of small friendly gestures, in our empathy for others, in the opening up to diversity as a whole.
We need to change our point of view and understand that places can be deficient, ideas can be deficient, marketing, planning, and design can be deficient. But not people. And that we can overcome obvious barriers driven by affection.
(Sigh) People ask me, "Where do I start? " Did you look at your sidewalk today? Would you be able to cross it if you were in a wheelchair?
Don't use the special parking places - not for five minutes, not for five seconds. They weren't made for you. They were made for 1 billion people, remember?
Ask at your child's school about their position regarding inclusion. A school that isn't able to consider the glaring differences of my son, won't have the sensibility to look at the more subtle differences of yours. My invitation goes further.
Be a village, be a support network. You know that friend who has a child with cerebral palsy? Call her up today.
Ask how she is and be willing to listen. Seems simple, but it rarely happens to me. Or that mother from your child's class whose child has a rare disease?
Invite them to the playground. Put the child on your lap, try to look like it's normal. Sometimes, it's not so bad.
It's only different. Inclusion isn't a favor. It's a process of improving the world for everyone.
It's understanding diversity as a strength, not a weakness. It's looking for solutions for teaching, for traffic, and for living together that embrace everyone as they are. Respect that underestimates isn't respect, it's pity.
Inclusion, for me, is looking for others' differences and respecting their differences, looking equal to equal. We've overcome many barriers in our story. We've overcome many that dehumanized João, that took him out of his little box of perfection, of beauty and acceptability.
to reduce him to a wheelchair or to a problem. By the way, please, never reduce a person to a problem. You are taking the risk that this person may believe it.
On the other hand, in contrast, these same barriers made us grow a lot. When we were dehumanized, we became much more humane. When I received such hard looks, I could look at others with more candor.
When we overcame improbable and impossible barriers, I could find genuine happiness because I didn't need to hide the pain. We feel fragile when we need to ask, but the truth is every mother needs a support network. And it takes a whole village to raise a child.
Every child. Even that child who says "I love you" with just a look. I want to share something with you now, to finish up.
It's been five months since João was able to call me Mom again - Mama, actually. I spent a lot of time without this word, without this place. And now we're on a trip, one of our many trips, and he gave me this gift that I want to share with you.
(Video) Lau Patrón: I . . .
João: I. . .
LP: lo . . .
J: lo . . .
LP: ve. . .
J: ve. . .
LP: you. . .
J: Ma. (Kisses) (On stage) LP: We are the diversity. Be the village.
Be the support network. Thank you.
