Surely the disability affects you from somewhere: a close neurodivergent child (with an autism spectrum disorder or some other situation), an older relative with some difficulty walking or developing a degenerative disease, an acquaintance with some health issue mental, a person you always see on the street, perhaps in a wheelchair or with a white cane, a friend who does not hear well. Although disability is invisible, it is part of our society and occurs in some form or another among all of us. In addition to telling a fascinating story, this book talks about it, and how to accept differences.
Many times what is different is scary or uncomfortable because we do not feel prepared to address it and because we focus on what differentiates us, instead of on what unites us. The protagonist of this book asks: “Why is it that when we talk about plants and animals we celebrate biodiversity, we marvel at something strange or different, like a twisted tree or a new species of mammal or fish, but among human beings we are Does it cause fear or discomfort?”
This book tells the life of Jacqueline Caminos de las Carreras, a woman who, after suffering poliomyelitis in 1951 at the age of 14, lived her life in a wheelchair and became one of the main human rights activists. with disabilities in Argentina and in the world. Poliomyelitis is a disease that attacks the nervous system in the brain and spinal cord. In the 1950s it left millions of people with various types of disabilities (and caused a huge number of deaths). It was one of the worst epidemics in human history. Two vaccines were created and over time it became controllable, but it still persists in some countries where doses are not as accessible.
Jackie had the means to do excellent rehabilitation. This allowed him to live a full life and see that other people with disabilities should also have the possibility of displaying the gifts or abilities they have beyond their specific impossibility. And he took action.
Jacqueline Caminos de las Carreras was born on February 14, 1937 in a world in which disability was seen as a disadvantage that affected the entire person. They called them poor things, handicapped, crippled; Franklin Roosevelt was president of the United States in his wheelchair, and yet most people with disabilities were placed in the sanctuary of pity. Fourteen years after her birth, it would be her turn to start changing history in Argentina, and make her contribution to the world.
The last tennis match. She had woken up feeling strange. His head hurt. He had a fever. With an intense discomfort that is difficult to describe. Every angle of his bones felt loose. But since the court was steps from his bed and the game had already been agreed upon, he made an effort to play. Also, since she is competitive, she was excited to beat her cousins Enrique and Maggie. He played in pairs with his cousin Mauricio, a year older, and he wanted to impress him.
She put on her sneakers, her skirt and her t-shirt, all in white, ready to show off that day. I was used to winning. He had a brief breakfast and he and his cousins crossed the large garden of their house towards the clay court.
They started the match of the family tournament that Jack had organized. He ignored her discomfort. He took a deep breath. He started with good skill by hitting a cross drive, but his hand began to loosen. He dropped his racket. He lifted her up. He hit it twice with a backhand and it fell again. He went to the net, which was what he liked, but when he blocked, the ball died in his court, he didn’t have the strength to hold the racket steady and make it bounce. Within minutes his legs and hand were jelly. They were winning the game, when he started to stumble.
She finished as best she could, exhausted, and they won the match. He had a fever of thirty-eight and a half. They had lunch and that afternoon Jackie took a nap. When he tried to get out of bed, he put one foot, then another, and fell to the floor. He couldn’t hold his fifty-four kilos. Polio had begun to eat away at his body. Jacqueline remembers: “They didn’t say polio at that time, they called infantile paralysis. The first hours when I got sick I fell, got up and fell, a terrible thing.”
He laughs when he tells it, and the laughter contrasts with the horror. Terrible, it’s scary. Not being able to get up is scary. But she laughs and tells it like this:
“I felt a lot of pain in the muscles of my arms, legs, and back. I was drowning, I was drowning, I wanted to pee, I couldn’t. Then a doctor came and I saw some kind of hose. It scared me so much that I peed myself. According to mom I was so scared! That night I never got up again. And according to the doctor I was very wrong to exercise so much, I would have had polio much lighter if I had not done so. Afterwards I don’t remember anything else, until I appeared in a car, extremely relieved. “I didn’t know what was happening to me, but at least I could breathe.”
First they told him he had the flu. Then they called their primary pediatrician, Juan Pedro Garrahan (the award-winning Argentine doctor), a serious man, a “little old man” (58 years old) who did not talk to him much, but who cried when he gave them the diagnosis: it was poliomyelitis. In the enormous mansion in the Buenos Aires neighborhood of Belgrano, those days at the beginning of 1951, death was breathed. Jacqueline was taken to her parents’ wing, as happened every time one of the children got sick. What was happening there was a mystery to his brothers. But they sensed that every day the coin could fall on the side of life, or the other. They felt it. The atmosphere was gloomy. Their mother waved to them dumbly from the window of the other wing. As was the case with most rich people, unless it was essential, everything was resolved at home, they were not admitted to the hospital.
That had been a very happy house until that morning; In the contrast the sadness stood out. Around the time Jacqueline became ill (1951) there was a massive global outbreak of polio, which was slowly reaching Latin America. Polio paralyzed nearly a thousand children every day in one hundred and twenty-five countries around the world. Images of children with wheelchairs, prostheses, steel leaflets (a type of straight devices) in their legs, crutches or enclosed in pulmotors multiplied. In one of those lungs, in April 1951, Jacqueline lay.
Locked up to her neck, with her head delicately resting on the cushion of the device and a small rearview mirror attached that expanded her vision. While her brothers made dolls with the governesses to give her, the “iron lung” guided her breathing. He inhaled and exhaled, inhaled and exhaled with a regular rhythm. The hulk, a cylinder of about a hundred kilos of metal measuring two meters by one, resembled a sarcophagus, but up to the neck. Jacqueline lived there for a month.
Paradigm shift
Time passed. Jacqueline made her life, she got married, she traveled, she had children, but she never distanced herself from the issue of disability in its social dimension, beyond wearing it. In addition to visiting hospitalized people who had had polio, in the early 1970s, while raising her two young children, she was part of the Board of Directors of the VITRA Foundation, an acronym for Housing, Work and Training for People with Disabilities. I played, talked, read stories, fed or helped dress some of the twenty young people and children who lived or studied there during the day; all with consequences of poliomyelitis, the majority partially or totally tied to a lung.
Already a decade before, when the epidemic was waning, the concern was what to do after the illness, how to get them out of the hospital environment and give them some tools for life, so that they would have the best quality possible. With that mandate, in 1959, the first Rehabilitation Congress had been organized in Mar del Plata, to which Howard Rusk himself was invited and which Jacqueline helped organize.
The event gave an enormous boost to physical medicineG and rehabilitation, that is, to physiatry, and the physiatric care institutes that applied the new techniques multiplied. It was about emulating the work that countries that had been at war had been doing, which had left millions of men and women with disabilities. The United States, Canada, Denmark and more European countries were ahead. Although many doctors still considered them “unrecoverable”, over the years the gaze on people with disabilities began to look more and more towards their future. They began to think about their socio-economic and vocational rehabilitation.
Children and young people who were discharged went home with a lung machine, an orthopedic bed or some other help if the paralysis was severe; Many times they were two environments where family life revolved around that device installed in the middle of the living room and there was not much idea or resources on how to prevent that girl or that young man from becoming just another piece of furniture. Sometimes some even returned from the brink of death. We had to help them, Jacqueline thought, to help them and their families not to go backwards, to move forward to continue studying, get a job and have a full social life with the greatest independence.
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