WHY IS THE RIGHT TO FREEDOM TO CHOOSE IS LIMITED FOR THE PARENT OF A DISABLED CHILD?

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Milan, 20/9/2017

' Digital and inclusion are the watchwords for the future of the school ': Thus begins the preface to the signature of the Minister Valeria faithful to the E-book on the school promoted by the online magazine Alley Oop de Il Sole 24 Ore.

Download Here The free e-book and read under the contribution of Francesca Fedeli On the inclusive school.

WHY IS THE RIGHT TO FREEDOM TO CHOOSE IS LIMITED FOR THE PARENT OF A DISABLED CHILD?

«Blue pill, end of story: Tomorrow you'll wake up in your room, and you will believe what you want. Red pill, stay in Wonderland, and you'll see how deep the rabbit hole is. '

Morpheus in Matrix, 1999, directed by Lana Wachowski and Lilly Wachowski

It is the official dogma of all Western industrial societies and reads: "If we want to maximize the welfare of our citizens, the way to do this is to maximize individual freedom."  The freedom to choose from a thousand options It is so rooted in our lives that no one would dream of questioning it, so we are accustomed to hear from Mc Donalds recurrent questions such as ' Ketchup, mustard, mayonnaise? Eat here or takeaway? With or without fries?. And also in the health field the question is not different: the model of Western health care has brought us To multiply the alternatives of care in the name of the autonomy of the sufferer, allows us to choose between therapy A or B by discharging the responsibility of making decisions about the patient or who he or she is taking care of.

Yet when it comes to families with needs out of the norm, where the parent has to choose an educational path and care for a disabled child, things get complicated and not a little.

The families I know do not have many options to choose from and the assessment for them of the cost-opportunity, the alternative to which they must give up when making a choice of one option over another, has not only economic implications but Deeply related to the emotional sphere.

A ' typical ' family can decide where to send their child to school, taking forward evaluations related to logistical factors (is the school near or far from home? Is it on the parent's way to work? Is it connected by means of transport?), to the teaching staff of the school (participating in the open day to know the managers and the staff of role, to deepen the peculiarities of that training program), with the ancillary services (has the full time? offers the Possibility of teaching foreign languages and sports activities in the after-school?), with strictly economic factors or status (public or private school? Montessori method, Salesians or Jesuits?).

A ' special ' family would like to proceed with the same evaluations but is faced with more pressing priorities and constraints that someone establishes for you, thereby limiting your choice. The logistical aspect that takes over is linked above all to the accessibility of the structures (presence of ramps, elevators, enabling means of transport), and in the open day it seldom addresses in public the theme of the teachers of support (' Madam, Maybe we talk privately about your case. '). The Moms I know I care to know if the cafeteria has the service self-service just to imagine how it will make your child with one arm to bring a tray with the dish filled with soup.

The Moms I know I do not have the option to choose to change school if something does not work: You can not afford to choose a school away from home and rehabilitation facilities, a school that is not accessible quickly in case of crisis Child is not an option.

And so you end up sketching, even if that's not the best school, even if that's not the best teacher, it all seems like a downward compromise.

And so the children I know I end up not eating the soup. And to accumulate a much greater disadvantage than their peers.

So it happens for educational choices, but Even for the choices of care the situation does not improve, indeed, with discrimination much more accentuated at regional level: Families who are guaranteed a rehabilitation course in public facilities in the territory (twice a week of stretching when it is okay, once every fortnight when it goes wrong), families who pay all therapies privately, families Forced to agree various operators in the territory because there is no unique concept of ' taking charge ' of the child, less than ever of the parents.

and choose a sport, a playful activity, in the afternoons free from care therapies? By a quantitative survey carried out by Doxa Kids to Www. FightTheStroke . org It emerges how the sports preferred by Italian children in the age of 6-13 years are football for males and dance for females: How many are according to you soccer fields and dance gyms accessible on the territory, able not only to accommodate children with disabilities M To teach them to cultivate a passion? Starter to inclusive sport does not mean to offer a gym with the access ramp: For families it means being able to choose teachers able to pull out the potential from every child, regardless of weaknesses, because so much when you start to Learn a new sport you're all a little awkward. Teachers that if you lack a hand they play the whole team with one hand stuck in their trousers.

Yet the laws are more or less there, the right to inclusive education, the right to work, the working permits for parents in situations of necessity, the inclusion in the objectives of the Agenda for sustainable development of the United Nations proclaiming: ' No one must be left behind. ' What is lacking is rather an education to the problems related to different skills: talking about it and educating from a young age to the knowledge of the different can help not to create new generations of adults who proceed at different speeds. 

Francesca Fedeli
Founder of FightTheStroke Org Advocating for young stroke survivors.
Www. FightTheStroke . org | Www. Mirrorable . org

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