The truest of smiles
By Nacho Doce
What brought me to the AACD (Association for the Aid of Disabled Children) clinic for the first time was Dani, a 16-year-old girl who had been diagnosed with severe scoliosis, or curvature of the spine. When Dani’s mother, a close friend, showed me her x-ray it was a shock. All the doctors they consulted repeated the same diagnosis and solution – surgery. We didn’t doubt that surgery was one solution, but her mother wanted to find a less radical one that wouldn’t leave her daughter with a metal rod in her spine limiting her movement. Dani exercises every day at home with a therapist to change her posture, and began visiting AACD. Admittedly ignorant of the range of problems that cause so many children to become disabled, I was astonished by what I saw – children with severe conditions fighting physically and mentally to improve their lives.
It was the children’s smiles and willpower that drew me to them from the start, as much to those who couldn’t move as to those who couldn’t speak or sense. The parents and even the therapists also showed incredible strength. Once I asked Yara Santos, 9, “How are you able to smile all the time?” Yara tried to answer me, but due to her condition I couldn’t understand. Her mother and therapist could, and they answered for her. “There’s no recipe for smiling,” were Yara’s words.
Another girl who impressed me with her willpower was Luara Crystal, 5, as she lifted weights to strengthen her body against the genetic disorder known as brittle bone disease. Her middle name seemed curious to me, so when I asked the therapist about that she said that when Luara was born and diagnosed with the condition her mother chose Crystal for her fragile bones.
One thing that left me speechless was that the majority of the children’s companions there were mothers who were alone because either their husbands were at work or had abandoned them and their disabled children. While observing the persistence of the mothers faced with the difficult and slow progress of their children, it occurred to me that they deserved a monument erected to them inside AACD, in the way that great figures have sculptures to them placed in public squares.
I was surprised to see activities such as soccer and capoeira, the Brazilian martial art that combines music and dance, used as methods of therapy at AACD. The mother of one child who practices soccer with a walker, asked me not to photograph too close to him so as not to interfere with the activity. He plays incredibly well and enjoys it. Another, four-year-old Ivan, who is able to move around only on a skateboard, also practices capoeira. I found it beautiful to watch. His mother and father told me that the skateboard gives Ivan a sense of security and mobility.
The story that left the single biggest impression on me was that of a mother who told me about how her son was born premature after her husband beat her one day during the pregnancy. He was born with cerebral palsy. The only response I could think of was, “I’m sorry.” But her answer to that was more than enlightening. “Don’t worry,” she said. “I’ve overcome it. I’m now studying sociology at nights while my mother stays with my son.”