My name is Conceição and I live in Salsa e Merengue, in Complexo da Maré. I’m from Minas Gerais and I came to Rio when I was 19 years old. I came to visit, I began to work, and I ended up staying; my mom also came and she’s living here too on the other street. My husband is from Maranhão – we met each other here, we had our son, Marley, and now we’re here, telling our story.
Marley was born with hydrocephalus and myelomeningocele, which affects his spine so that he has trouble walking. He walks a little at home with his walker and when we go out he uses a wheelchair. But he dances, he plays soccer, he plays with other kids, he doesn’t depend much on anyone else. If I want him to go to the bakery he goes out and goes to the bakery, if I want him to go to school on his own he’ll go. There are mothers who don’t accept their sons because they were born a certain way – not me. I never questioned it. I never said, “oh, my whole life is ruined because my son is like this.” I’ve always managed it well, I’ve always tried to do the best I can to help him.
Having Marley didn’t change my perspective on life at all. The only thing is that I don’t want to have another kid because he still has more to grow, and to take care of two children would be difficult. When he was born he took a lot of medicine, and one of them hurt his growth. It was a very expensive medicine and we don’t have a health plan; the pharmacy would never have it; and over the years he wasn’t growing, he practically wasn’t eating anything, and it wasn’t doing anything to resolve his problems. I went to see another doctor and he said, “this medicine here is hurting him and he’s taking it for no reason.” Caramba, I was buying it his whole life, from his first months of birth to when he was 5 years old, I couldn’t save any money, and for what? After we changed he began to eat better and he’s grown quite a bit. Today he’s 12 years old and nearly my size. He’s already dancing with me.
I worked taking care of an older woman, but when Marley was born I had to stop in order to take care of him. We spent a lot of money on diapers, on doctors, on other things, and it was hard while I wasn’t working. A friend told me that there was a woman who was needing someone to work cleaning her apartment in Copacabana. She told me that if I told the woman about Marley she wasn’t going to hire me, because of his complications, but I went there, I talked with her, I told her my story, and the woman said that it wasn’t a problem, that when I needed to leave to take him to the doctor I could leave and come back the next day. I started working for her and then she introduced me to a friend, and I’ve been working there since, doing cleaning on a daily basis in Copacabana and other parts of the zona sul.
We’ve always lived here in Maré. We lived in Vila do Joao and from there we came to Salsa e Merengue when Marley was born. It’s really nice here: I’ll walk into the street and cars will stop for me to cross with him, everyone comes over and says “hey, kid!”; they’ll play with him and converse with him normally. Going outside the favela, the people look at you as if you were an ET. We take the bus to get around and there’s a designated place for wheelchair users to sit, but at times when the bus is full the people just stay there. I’ll say, “for the love of God, aren’t you seeing that there’s a wheelchair user entering?” One day coming home from one of his doctor’s appointments two buses refused to take us because they were crowded. Then the third crowded bus passed and I began to complain: “What time am I going to get home with my son, midnight? Am I going to have to sleep here in the middle of the street?” Finally the driver came down and helped us on. At times when I’m talking like that Marley will get embarrassed and tell me to stop. But I always tell him: “Filho, if we accept things as they are then people aren’t going to do anything. We have to speak up.”
The fact is that the majority of people only think of their own well being, just like the mayor and the government. They want to make everything nice and pretty for the Olympics but in the end it all turned out badly. There’s so many projects and they’re all missing something – I’ll see a pothole on a street one day, I’ll see them close it, and the next day I’ll pass by the same place and see the same pothole again. My lord, how can they not manage to close a simple pothole! And then they’ll say that they don’t have the money to finish a certain project, but where is that money going? It’s not going to my pockets. The state right now is bankrupt, the hospitals are failing. Later this month Marley has a doctor’s appointment, but I don’t know how it’s going to work. The hospital is in Barra, where the Olympics are going to be held, and there’s a lot of roads that are going to be closed, there’s other people who are going to need to use the hospital, and so they’re rescheduling everything for afterwards.
At times people say, “Marley doesn’t have the right to do this.” He has the right to do whatever he wants – you know why? Because I’m going to do it for him. If we wait for the government then we’re not going to get anything – ten years from now they’ll give you a house; ten years from now they’ll construct a ramp in his school. And so I have to fight, I have to struggle on my own, taking advantage of the fact that he’s young, that my mom is here to help take care of him, because as he grows in the future I’m going to have to stop working more to give him more attention. At times he fights with me because I’m absent. But I tell him: “Filho, I’m working now. I have to run after these things while you’re young.”
People think that someone like Marley doesn’t do anything. We have our legs, we have our arms, and we see someone who’s like that and we think that they’ve never played. At times people look at him and say, “poor thing,” and I always respond: “I don’t know why you say that. He’s so happy, he does so many things. If you spend a day with him you’ll see how much he does.” We’re so accustomed to having our arms, we’re so accustomed to having our legs that if we break a bone we’ll give up and say, “I can’t do anything.” It serves as a lesson for us: at times there are people who don’t have an arm, who don’t have a leg, but who do everything, and we have all our body parts and create a thousand and one difficulties for ourselves not to do something.
In the future, when Marley grows up, I hope that he has a mature way of thinking. I want to see him studied, I want to see him with an education. He’s in the third grade now, a little behind because of his growth, but in spite of the difficulties he’s there learning. He loves dancing, he loves music, he loves playing sports – who knows, maybe one day he’ll become a famous athlete. But what I hope for him is that he grows, that he marries, that he has his own family: a wife, children, cats, dogs, birds. I want him to have good things in life so that in the future I can be able to feel pride in him and say: “look, that’s my son.”
There was one day recently when someone said to me, “you’re a warrior mother, you deserve a prize.” I thanked him – but the greatest prize, the one who gives that to me is God. I have my son and he’s someone who feels love for me: when I leave home I talk with him, when I arrive home he comes and gives me a hug. I get that feeling that you get when you’re with a person who loves you, who transmits good things. That’s my prize – my greatest prize in life is to be able to have him, to care for him, to do what I can for him. He’s my prince.