Tackle the theme ofsocial and scholastic inclusion of children with motor disabilities, emphasizing the concept of diversity as a resource. It is the goal of the cartoon full of adventures that wants to explain above all to minors but not only what isSpinal muscular atrophy (Sma), a rare neurological genetic pathology that in Italy concerns about a child on 6mila and which leads to the progressive loss of motor skills, in most cases the disease is autosomal recessive. The comic is called “The adventures of the SMAgliante Ada” and is the subject of a national campaign aimed at elementary schools, which proposes the adoption of the volume as a didactic tool to sensitize children, families and teachers to the inclusion of people with disabilities.
The protagonist of the comic is Ada, she has SMA and is a dog who is about to start attending sixth grade by moving on a electronic wheelchair. The book tells about her everyday life, the relationship with classmates, family dynamics and relationships with the reality that surrounds her. This is the second volume of the comic presented at the Catella Foundation in Milan, part of the wider educational project “La SMAgliante Ada”, created by the SMA Families association and by NeMO Clinical Centers specialized in the treatment of neuromuscular diseases, with Roche Italia. “Children are the future adults of tomorrow and it is essential for us to enter schools with Ada and a positive vision of disability” he says Anita Pallara, president of SMA Families. “Every year in Italy 40-50 children are born with SMA, an important number but which classifies us as a rare disease, and for this reason often with few lights on. Comics are a universal language with which to approach the widest possible audience to our world and this is one of the main objectives of the project: to get to know each other, in the daily difficulties and in the skills we use to overcome them, which in hindsight are not really like that. different from those of each of us “.
A composite team of educators, psychologists and counselors participated in the project, supported for the scientific part by experts from the vast network of NeMO Centers together with a working group of cartoonists – screenwriters and professional designers specialized in children’s stories (Danilo Deninotti, Giuliano Cangiano , Roberto Gagnor, Giorgio Salati, Gianfranco Florio, Mattia Surroz, Luca Usai and Emanuele Virzì) who, after getting to know the initiatives of the SMA Families and the NeMO Centers, “played with the imagination to give life to the adventures of Ada and his companions, thus telling the little ones that each of us, in his own specificity, is different from the others and that it is precisely in this diversity that the secret to being able to realize ourselves is kept ”. This is how the comic wants to drive with irony and lightness students of the last years of Primary School in understanding of complex topics to better understand their peers with disabilities and try to put themselves in their shoes. “To explain to children what it means to live with a rare disease such as SMA, simple and concrete answers are needed,” he explains Valeria Sansone clinical director of the NeMO Clinical Center in Milan and scientific director of the project. “The knowledge of one’s own limits and resources becomes, in fact, an indispensable condition to face the changes imposed by the disease with serenity and self-awareness. That’s why – continues Sansone – in the second volume of the comic we wanted to deepen even more delicate issues from a clinical point of view, such as surgery, breathing and nutrition. We are convinced that, through Ada, knowing and sharing are the first step to overcome fear and open up to others without prejudice ”. The association invites all those who want to join the project to download the school kit on www.lasmaglianteada.it. In addition, the first 100 participants who request volume 2 of “The adventures of the SMAgliante Ada” through the dedicated website will be able to receive the paper version free of charge at home. For more information on how to adopt the project in schools write to [email protected].
The article Spinal muscular atrophy, the comic that tells about the social and scholastic inclusion of children with motor disabilities comes from Il Fatto Quotidiano.