Rose’s Divine Love
By Nacho Doce
Deep inside the massive favela called Brasilandia, one of the biggest of Sao Pauloâ€™s wretched slums, lives Rose with her husband Ivo and their three disabled children.Â I first learned of Rose’s predicament while doing a feature story about the AACD clinic for disabled children. I immediately arranged for us to meet for the first time in their slum at 5 am, the time they leave for a weekly session of physical therapy.
Their alley didnâ€™t appear on my taxiâ€™s GPS, and we got lost in the dark maze.Â I had to wait for a more decent hour closer to 5 am before phoning them for help. With their directions, I finally reached the top of a steep alley, and found myself practically inside a â€śboca de fumo,â€ť best described as an open air crack den.Â It wasnâ€™t until Ivo quickly rushed to meet me and spoke to one of the addicts, that I heard the words, â€śTaxi free to pass.â€ť I was relieved.
We hiked downhill through two steep alleys to reach their house. In the living room, their three mute children, Samille, 9, Dhones, 7, and Izabely, 6, were sitting in a row on a red felt-covered sofa, in front of a wall covered with green and brown mold. The scene struck me as both sad and beautiful.
All three kids suffer from a disease called Pelizaeus-Merzbacher, or PMD, a rare genetic nervous disorder which affects coordination and intellect. I asked myself the logical question of how a mother could continue to have children with such a serious health condition. Samille, Dhones and Izabely all were diagnosed with the disease at an early age.
As soon as I arrived at the house, it was time to take the kids to the clinic. Ivo quickly began the arduous ritual of lugging the wheelchairs, one by one, back up the alleys to the street at the very top. He made three trips, and then returned again to carry two of the kids while Rose carried the third. A specially-equipped van arrived as the sky lightened, and we all got in and headed off on the long ride to AACD.
Rose and her family were living in the poor northeastern state of Bahia when they learned of AACD, the only free clinic of its type in Brazil. Ivo traveled to Sao Paulo first to find work and then bring the family, even though at that time they werenâ€™t sure how the disease would affect each of their children.
Once in Sao Paulo, Rose requested help from the INSS social security system, and after three years of waiting they were granted just 622 reais ($332) per month for one of the three kids. The INSS determined that Ivoâ€™s job could maintain the other two. Ivo works in a bakery 12 hours a day, six days a week, and earns 680 reais a month, just over $350 at todayâ€™s exchange. When I commented to Rose that she should keep requesting help from the INSS, she responded, â€śI felt humiliated there. I canâ€™t go back.â€ť What she did obtain was help from Sao Paulo city hall in the form of transportation to AACP. The van that picked us up at the top of their alley began to arrive a year after she put in the request.
I accompanied Rose and her children for their therapy sessions in the clinic, where she had befriended other mothers of disabled children. One of them I remember clearly for something she told me.Â â€śWhen I met Rose and her children I finally had a reason to stop crying. She has three disabled children and I have just one. ItÂ wasn’tÂ right for me to be so sad when I compared my situation with Roseâ€™s.â€ť
I also spent many hours at their home in Brasilandia, where Rose had very little rest from giving constant attention to her children. During those moments she did manage to tell me parts of their story. The first thing she did was ask me to guess her surname and that of her children. IÂ didn’t have a clue, so she told me, â€śAmor Divino,â€ť translated as Divine Love. I looked at her smiling, but speechless.
Life at home goes on in their one bedroom with just two beds; Rose and Ivo sleep in a single bed, and the three children share a double. They eat, play, watch TV and sleep in the same room. I never did see how they arrange themselves to sleep. It seemed a moment too intimate for me to stay around for.
The two girls go to school because a van takes them. The boy, Dhones, has to be carried for the 15-minute walk from home to a nearby public school just so he can participate in the hour-long recreation period. Since it’s not a school for the impaired, he’s only able to participate in recreation. While heâ€™s at school with his mother, a young neighbor stays with the girls, who canâ€™t speak but manage to communicate with the neighbor through gestures.
Certain situations during this story remain vivid in my memory. One day Rose received a phone call from a local hospital and had to step out the front door for a better cell phone signal, leaving me alone to feed the three children. With all three dishes of food I took turns giving one spoonful to each, but I was so nervous with the quantity, frightened they could choke on it. In the end I managed well, and it turned into a very satisfying experience.
I felt great frustration for her due to the fact that the government refused her enough aid to survive. The saddest moment for me was accompanying Rose as she carried Dhones to school. I felt I was invading her privacy as I photographed her carrying him through the slum alleys, as others stood by watching.
One day I decided not to accompany her to pick up Dhones from school, so I sat on their front stoop waiting for them to arrive. I watched crackheads buying and selling the drug as children played nearby, when Rose appeared with Dhones in her arms. His weight almost overcame her strength, as she was nearly dragging his legs on the ground. I picked up my camera and took a few photos, which to me is the picture that says everything about her world and predicament.
Once we were talking while she prepared their dinner, I said to her that I hoped these photos could help her in some way. She gave me a look that shocked me. Her eyes told me that she didnâ€™t believe in aid arriving from anywhere.
Their neighbors often help by carrying their packs, and sometimes the wheelchairs, which when on flat ground hook together to form a train. Rose told me that even the crack vendors helped her from time to time. They would even move out of the way if I asked them so they wouldnâ€™t appear in my photos. I could only think that the ones who really should help, the government and INSS, do not, but these guys who are doing something illegal, do.
One emotion that was constant throughout the story was rage for the system. I’m without words to express this feeling, so what comes to mind are some phrases from Uruguayan writer Eduardo Galeano:
How about if we hallucinate for a while? Let us stare beyond infamy, to imagine another possible world:
Economists shall not call â€śstandard of livingâ€ť what is really â€śstandard of consumption, nor will they call â€śquality of lifeâ€ť what is really â€śquantity of things.â€ť
Politicians shall not believe that the poor loveÂ to eat promises.
No one shall be considered a hero or a fool, for doing what he believes is right instead of what will serve him best.
Food shall not be a commodity, nor shall communications be a business, because food and communication are human rights.
Education shall not be the privilege of those who can pay.
Justice and liberty, those Siamese twins condemned to live apart, shall meet again and be reunited, back to back.
The desperate shall be welcomed and the lost shall be found, for they are the ones who despaired from so much waiting, and lost their way from so much searching.
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