Inés Enciso Merino is coordinator of the Development and Research area at the Spanish Academy of Cinematographic Arts and Sciences. As a Cultural Manager, she is fully involved in projects related to training and inclusion, as tools to promote equal participation in culture. In her activism in this field she has a lot to do with Mateo, thirteen years old, her son and the Asturian actor Javier Gutiérrez. Born with a mental disability, Mateo is one of the protagonists of the movie “Campeones”. Inés Enciso has lectured in Oviedo on culture and inclusion, within the framework of a health event organized by the Quality Assessment Unit of the Principality’s Health Service (Sespa) and held at the Central University Hospital of Asturias (HUCA).
–How did you receive the news that the child you were expecting was different from the usual ones?
–It was in a control ultrasound at seven months. They found that she had many malformations. The truth is that they were not delicate when they communicated it to me. I had very bad luck with the doctors during the pregnancy. However, once Mateo was born, the truth is that the experience has been quite the opposite. I have found a lot of support in the health sector.
How do you assimilate that blow?
It is a very long grieving process. First you have to manage all the medical and care aspects, which is already a revolution that is very difficult to handle, and then you have to learn to accept that all those illusions and that imagery that you had in your head when you got pregnant are not going to be . It is a path of learning and giving up.
What was the reaction of your environment to the news?
–Everyone was very afraid of what he was going to suppose. We huddled together to face it but we were all terrified
–When and how did you decide that Mateo would be born?
– I didn’t decide. They proposed a natural birth because they thought I would die during it and thus I could get pregnant again immediately and overcome the trauma. But I was not able and finally they gave me a caesarean section. Maybe that was what saved him. I will never know
How does a family prepare to welcome such a child?
–I suppose that each one in its own way because there is no manual. Fears and doubts that arise individually and collectively must be managed. It is a management of mixed emotions because in the end it is the birth of a new member in the family and, in turn, you do not know what it is going to mean.
The film “Champions” has changed the view of an entire society towards people with intellectual disabilities
What are the first months of life like?
–They were very complex because you enter fully into a world that you are completely unaware of. They tell you about illnesses, alterations, complications that you have never heard of and you can only try to manage the day to day. The downturn comes later; when you can stop for a moment and see the mountain you have climbed.
-What is the most complex in the initial years?
-All. These are a few years in which you feel in a battle to which you do not see the end. But with time, everything settles down and the light appears.
–And the most gratifying?
–See that you are capable of managing the situation and also be happy and see your son happy.
– How does society respond to the arrival of these children?
-Fearfully. We are not used to living with them and that is why they generate so much fear. Little by little that is changing but they keep looking at you on the street with that “poor” face…
–How do children like Mateo affect society?
–They help us understand that we all function and relate differently. They help us to be more tolerant
–What can they do better than others and in what aspects is the disadvantage most evident?
They don’t do anything better than others. They are just different or have limitations in some aspects. Their main disadvantage is that we have built a society that allows them to participate equally.
What is the biggest challenge on a day-to-day basis?
-Don’t break down.
What is it that society ignores about these people?
–That they have a lot to contribute and that walking by their side is very enriching.
– What has been the most pleasant surprise you have been given in relation to Mateo?
–Everything has been a surprise because at birth, with such bad expectations, you draw a terrible future. The surprise is that, although it is complex, it is also full of wonderful moments.
–What did the success of “Campeones” mean?
–It has changed the look of an entire society towards people with intellectual disabilities. And it has created references for them. It is a door through which many advances in rights have slipped through.
–What are the main guidelines for an inclusion process that is enriching for everyone?
–That we understand that the limits are set by society, not them, and that we must make an effort to adapt so that the greatest number of people can participate equally in our society
–In this line of inclusion, how should we modify our gaze and our language?
–Listening to them and seeing them. Giving them their space. They ask for nothing more. Actually, it should be a lot easier.