Carla lives in Taranto with a husband, two children, a job, an ordinary life. In 2010, everything changes. ALS arrives. She loses the ability to speak almost immediately. An eye-tracker reads her pupil movements, allowing her to communicate through a speech synthesizer. Attached to a respirator, within six years Carla loses the use of her legs, her arms, the muscles in her neck, her swallowing reflex, the muscles of her mouth, her sense of taste. Yet she remains like a butterfly trapped inside a diving suit—someone who has never known resignation. Death terrifies her. She refuses to surrender, despite institutions that provide her with only ninety minutes of care each day, having abandoned her. Her family and friends have not abandoned her. Her son Andrea left university to help at home—there is no money for hired caregivers, dedicated health workers, or specialized nurses. Her husband Biagio does countless things to care for Carla. Every night, he sets four alarms, each going off just over sixty minutes after the last, checking that all is well, that she isn't choking.
Matteo is sixteen in 2001. One August evening in the Treviso region, he rides his motorscooter. A plane tree bends, its roots lift from the earth, it catches the power lines and crashes down on him. The impact fractures both his central cervical vertebrae and his spinal cord. The diagnosis offers no hope: tetraplegia. This is how Matteo's life splits in two—and fate will mock him again. He cannot build a smart home with the settlement money from his accident because the bank holding his funds collapses. He had entrusted them with no risky investments. He loses everything. Years later, Matteo writes to politicians, to those who had promised voters full reimbursement during their campaigns, reimbursement for what unscrupulous bankers had stolen and what negligent oversight had failed to prevent: "I have lived these seventeen years in two rooms of the house, because only the kitchen and living room were accessible to me. We went from planning some kind of future to not knowing how we would make it to the end of the month (…). Our savings were stolen. So were our plans for any small peace of mind."
These are two of ten stories in The Most Beautiful: The Constitution Betrayed. Italians Who Resist (Turin, Add Editore, 2020, 288 pages, €15), by journalist and Piazzapulita correspondent Alessio Lasta. An investigative book that bears witness—through accounts of real events from across Italy, north to south—to how far our Constitution remains "a dead letter in the lives of so many, far too many Italians." Stories range from denied housing rights to the lack of worker protections to the absence of any welcome for foreign nationals, and much else besides. In Carla's case and Matteo's, the Constitution is violated on two counts: articles 32 and 47. The first guarantees health protection "as a fundamental right of the individual and interest of the community, assuring free care to those in need." The second protects "savings in all its forms."
On disability, there is enormous work to do to avoid trampling on dignity, desire, and dream—this is what emerges from the pages devoted to the subject. Pages that compose an intense report on lives of men and women who refuse to quit. Through them, the author pierces the silence surrounding families with gravely, gravely ill relatives, wrestling with bureaucracy, lack of money, care allowances cut to nothing and arriving late when they come at all, sacrifice and humiliation. "Today we are a pale echo of the country our founders designed for us," Lasta writes with bitter disillusionment.
The reader begins to wonder: is any of this normal? Is it normal that Carla and Matteo, like so many others in their circumstances, must roll up their sleeves and fend for themselves because no one helps them, their rights and protections unrecognized? One might take pride in what they do heroically for themselves. But it is deeply demoralizing to see that the country "put in writing that (…) the sick (…) must not be left alone, only to betray the highest principle of dignity, confining them to the silence of their homes, to the prison of their bodies, to the anonymity of their lives." How much longer must this fragile humanity, mocked by countless failures, walk down lonely roads? Lasta, giving voice to these stories, illuminating their darkness, laying out precise data and numbers, asks himself that very question: "Why do we allow a human being to live with such suffering, forced to fill that gap with inhuman effort, when our founders had written down in black and white that these were recognized rights?" And then, with "a journalist's pen and a man's gaze," he issues a vital warning. It might be summed up in a famous film line: "Alone, you can go anywhere. With someone else, you always end up somewhere." It is time to open our eyes, to take concrete steps forward. The Constitution is seventy years old.
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