Paulina suffered from a lack of oxygen at birth that caused cerebral palsy, a condition that, at five years old, progresses slowly and erratically. How will Paulina develop in the future? What will the adult Paulina be like? What can you do and what not?
How will your family (with two other siblings) cope with the challenges and limitations that your unpredictable brain imposes on them? In order to ward off the anxiety that this disorder generates, the writer and publicist based in Madrid Francisco Bescós (Oviedo, 1979) has written the book Las manos cerradas . Being the father of a girl with cerebral palsy in her early childhood (Sílex).
A hybrid text that swarms between the autobiography and the essay, between the harshness that the situation confers, the moments of tenderness and a tone far from drama and not lacking in humor. With the particularity that the voice that counts is not that of the writer Bescós, but that of the daughter Paulina, an imaginary and foul-mouthed Paulina who dialogues with her father, turned into a character.
“I think I chose this voice out of cowardice: I did not dare to face a book like this bare-chested”, says the author. “I had dedicated myself to writing crime novels, escape literature, but I thought I had to address this issue, write about this hard, radical, extreme experience that we went through and about which there is not much written.”
Among Bescós’s novels are titles such as El por qué del color rojo orThe right side , both published by Salto de Página.
What dominates the life of this family is continuous change and unceasing uncertainty. If life already changes with any parenthood, cerebral palsy makes that change much more pronounced.
In the book Bescós recalls his past as a young and successful freelance publicist , an award-winning and carefree writer, to become a father “in chronic concern”, in continuous medical consultations, social struggles and the family promise not to speculate about the future. not asking questions that start with “what if ?”, generating fear and frustration.
Many of the concerns of that past that now seems distant are now banal. They measure Paulina’s progression in comparison with that of her twin brother, Chisco.
“More than handling this abstract and deceptive concept of happiness, I think like the psychologist Edgar Cabanas: we have to bet on daily joy”, says Francisco Bescós.
Special education, now in the spotlight due to the Celaá Law, is one of those rampant concerns, as a member of the Inclusive Education Platform Yes, Special Too.
“This law does not intend to put an end to special education in one fell swoop, but it can stifle it and drain it little by little”, explains the writer, “it does not explain what resources will be available or how families will be taken into account ”.
These families defend special education, considered by many to be segregating, as a different form of inclusion (because it teaches skills that will have an impact on integration in society and performance in the world), especially for the most affected children who pay more attention they need (only 17% of disabled students go to special centers, 0.4% of the total, the rest are integrated in ordinary centers).
Another workhorse of Bescós is early care, that is, that psychological, pedagogical, physiotherapeutic care that is given to babies born with disabilities in the first moments of their life and that greatly improves their future outlook. “They are therapies that make sense at a specific moment, when you can get things done on time.
But in the Community of Madrid, in the organization called Crecovi , there is a bottleneck that causes everything to be delayed ”, explains the writer. This family was given an appointment for 10 months after birth. They had to resort to a private center so as not to lose the window of opportunity.
Positive thinking, the happiness industry, the philosophy of overcoming at all costs, is another of the dark clouds that are placed on the existence of a father of a daughter with a disability and that especially pissed off Bescós: that bombardment of smiling messages and well-meaning videos that friends and family send on WhatsApp.
The stories of overcoming that load everything on the individual forgetting the circumstance and the society; the speeches that, in some way, blame the victims who do not get ahead. Even if you want to, many times you can’t.
“More than handling this abstract and deceptive concept of happiness, I think like the psychologist Edgar Cabanas: we have to bet on everyday joy. We cannot let ourselves be eaten by the drama and tear our shirts off every time we have to pass Paulina a steak through the mini-first, ”concludes Bescós.
The uncertainty continues. Who knows if Paulina will one day be able to read this book where the voice of her imagined self resounds.