Surely the disability hits you somewhere: a neurodivergent child (with an autism spectrum disorder or some other situation), an older relative with some difficulty walking or who develops a degenerative disease, an acquaintance with some mental health problem, a person you always see on the street, perhaps in a wheelchair or with a white cane, a friend who can’t hear well. Although disability is invisible, it is part of our society and manifests itself in one form or another among all of us. Along with telling a fascinating story, this book is about it and how to accept differences.
This book chronicles the life of Jacqueline Caminos de las Carreras, a woman who, after suffering from polio in 1951 at the age of 14, lived in a wheelchair and became one of Argentina’s leading disabled human rights activists and in Argentina the world. Polio 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 huge numbers 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 has allowed him to live a full life and see that other people with disabilities should also have the opportunity to show the gifts or abilities they possess beyond their specific impossibility. And he acted.
Jacqueline Caminos de las Carreras was born on February 14, 1937 into a world where disability was seen as a disadvantage that affected the whole person. They called them poor things, handicapped, crippled; Franklin Roosevelt was president of the United States in his wheelchair, yet most people with disabilities were placed in the sanctuary of mercy. Fourteen years after her birth,it will be her turn to start changing the history of 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 intense discomfort that is tough to describe. Every corner of his bones felt loose.But since the field was a few steps from his bed and the match had already been arranged, he forced himself to play. Also,because she is competitive,she was excited to beat her cousins Enrique and Maggie. He played with his cousin Mauricio, a year older, and wanted to impress him.
She put on her sneakers, skirt and t-shirt, all in white, ready to show off that day.I was used to winning. He had a short breakfast and he and his cousins walked across the large garden of their house towards the clay court.
They began the family tournament game Jack had organized. He ignored his discomfort. He took a deep breath. He began with good skill by hitting a cross drive, but his hand began to loosen. He dropped his racket. He picked her up. He backhanded him twice and fell again. he went to the net, which he liked, but when he blocked, the ball died in his court, he didn’t have the strength to hold the racket still and make it bounce. Within minutes his legs and hand were jelly. They were winning the game when he began to stumble.
She finished as best she could, fatigued, and they won the game. He had a fever of thirty-eight and a half. They had lunch and Jackie took a nap that afternoon. When he tried to get out of bed, he put one foot, then the other, and fell to the floor. He couldn’t hold his fifty-four kilos. Polio had begun to eat away at his body. Jacqueline recalls: “
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 tube. It scared me so much I peed my pants. According to my mother, I was so scared! That night I never got up again. And according to the doctor I made a big mistake in doing so much exercise, I would have had much milder polio if I hadn’t. I don’t remember anything after that,until I appeared in the 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 family pediatrician, Juan Pedro Garrahan (the award-winning Argentine doctor), a serious man, an “old man” (58 years old) who didn’t talk to him much, but who cried when he gave him the diagnosis: it was polio. In the enormous building in the Belgrano neighborhood of Buenos Aires, in those days at the beginning of 1951, death could be felt. Jacqueline was taken to her parents’ wing, as happened whenever one of the children fell ill. What was happening was a mystery to his brothers. But they sensed that every day the coin could fall on the side of life, or on the other. They heard it. The atmosphere was gloomy. The mother greeted them silently from the window of the other wing.As with most rich people, unless it was essential, everything was resolved at home, they were not admitted to hospital.
It had been a very happy home until that morning; In the contrast, sadness stood out. Around the time Jacqueline became ill (1951) there was a massive global epidemic of polio, which was slowly reaching Latin America. Polio paralyzed nearly one thousand children every day in one hundred and twenty-five countries around the world. Images of children with wheelchairs, prostheses, sheets of steel (a type of straight device) in their legs, crutches, or locked in pulley motors multiplied. In one of those lungs, in April 1951, lay Jacqueline.
Closed up to the neck,with her head delicately resting on the cushion of the device and a small rear-view mirror attached which expanded her vision. While her brothers and governesses made dolls to give her, the “iron lung” guided her breathing. He breathed in and out, in and out in a regular rhythm. The carcass, a cylinder of about one 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 has passed. Jacqueline lived her life,got married,travelled,had children,but she never distanced herself from the topic of disability in its social dimension,beyond wearing it. In addition to visiting hospitalized people who had polio, in the early 1970s, while raising her two young children, she served on 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 polio, most linked partially or totally to a lung.
Already a decade earlier, when the epidemic was in decline, the concern was what to do after the illness, how to get them out of the hospital environment and give them the tools for life, so that they had the best possible quality of life. With that mandate, in 1959, the first Rehabilitation Congress was organized in Mar del Plata, to which Howard Rusk himself was invited and which Jacqueline helped to organize.
The event gave an enormous boost to physical medicine and rehabilitation, i.e. physiatry, and physiatric care institutes that applied the new techniques multiplied. it was about emulating the work done by countries that had been at war, which had left millions of men and women with disabilities. In the lead were the United States, Canada, Denmark and other European countries. Although many doctors still considered them “irrecoverable”,over the years the gaze on people with disabilities has begun to look more and more towards their future. They began to think about their socio-economic and professional reintegration.
Discharged children and teenagers 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 center of the living room and there weren’t many ideas or resources on how to prevent that girl or young man from becoming just another piece of furniture.Sometimes some even returned from the brink of death. We needed to help them, Jacqueline thoght, help them and their families not to go back, to move forward to continue studying, find a job and have a full social life and with maximum independence.
by Luciana Mantero
In this note
How has Jacqueline Caminos de las Carreras influenced modern disability activism and legislation today?
interview between the Editor of Time.news and expert on Disability Advocacy
Editor (E): Welcome to Time.news, where we dive into the stories shaping our world today. Joining me is a leading expert in disability advocacy and human rights, Dr. Maria Lopez.Thank you for being here,Dr. Lopez.
dr. Lopez (D): thank you for having me! It’s a pleasure to discuss such an crucial topic.
E: Today, we want to focus on the remarkable life of Jacqueline Caminos de las Carreras, who triumphed over adversity after contracting polio as a teenager and went on to become a pivotal figure in advocating for the disabled community in Argentina. what can you tell us about her impact?
D: Jacqueline’s story is powerful. She not only raised awareness about disability issues but also challenged societal norms that viewed disability as a weakness. Rather, she emphasized the talents and contributions of disabled individuals. Her advocacy opened avenues for people with disabilities to be seen as active participants in society rather than as objects of pity.
E: Absolutely. It’s striking to see how Jacqueline’s experience with polio—an epidemic that devastated many lives—transformed her into a champion for disability rights. In what ways did her personal journey serve as a catalyst for broader social change?
D: Jacqueline’s journey was deeply personal, but she made it universally relatable. By sharing her own struggles and triumphs, she highlighted systemic barriers faced by disabled individuals. Her relentless pursuit for equal rights made significant strides in legislation, education, and healthcare access for those with disabilities in Argentina.
E: It’s fascinating how Jacqueline turned her own challenges into a platform for change. Can you elaborate on the societal perceptions of disability during her early years?
D: Certainly. When Jacqueline was growing up in the 1940s and 50s, disability was often stigmatized. Individuals with disabilities were marginalized and sometimes viewed as “less than.” Jacqueline defied this notion; she showcased that disability does not define someone’s potential. Her activism spurred conversations around dignity, respect, and the need for inclusivity.
E: Jacqueline had the advantage of rehabilitation opportunities that many did not. How important is access to rehabilitation in the context of disability rights?
D: Access to rehabilitation is crucial. It determines not only the quality of life for disabled individuals but also their ability to engage with society. In Jacqueline’s case, her rehabilitation allowed her to reclaim her autonomy and live a fulfilling life. This access must be worldwide, as it enables individuals with disabilities to thrive rather than merely survive.
E: Jacqueline faced significant health struggles, especially when her polio symptoms began to escalate. In the context of mental health, how does the experiences of a person with a physical disability connect with the challenges of mental health?
D: There’s a deep intersection between physical and mental health. Individuals with physical disabilities frequently enough face mental health challenges such as depression and anxiety, partly due to societal stigma and isolation. Jacqueline’s story also reminds us of the resilience that can emerge from adversity. Acknowledging the holistic nature of health—physical and mental—is essential in disability advocacy.
E: It’s clear that Jacqueline’s legacy is powerful. As we move forward in disability advocacy, what lessons can current and future activists learn from her life?
D: The key lesson is the importance of storytelling. Sharing personal experiences can humanize the issues faced by the disabled community. Activists should also focus on building alliances, promoting inclusivity, and ensuring that the voices of disabled individuals lead the narrative around their rights. Jacqueline’s life exemplified that persistence in activism can lead to tangible change.
E: Thank you, Dr. lopez, for sharing your insights on Jacqueline Caminos de las Carreras and the broader implications of her advocacy. It’s a vital reminder of the strength found in community and the importance of inclusivity.
D: Thank you for highlighting this essential conversation!
E: And thank you to our audience for tuning in. Remember,understanding and advocating for disability rights is crucial for creating a more equitable society for everyone. Until next time!