Work in progress about Agustina and Mia’s daily life, two women, mother and daughter living in Buenos Aires, Argentina. Agustina got pregnant when she was 15 years old. In June 2007, one month after she turned sixteen Mia was born. After 3 years of tests and diagnoses, the doctors discovered that Mia had been born with Periventricular Leukomalacia, a type of brain damage. That year Mia’s father left. Even though Agustina has a family that support and help her, it has been the two of them facing a mean reality all these time.
On June 18th 2022, Mia will be 15 years old, the very same age Agustina was when she got pregnant. Mia has already exceeded her life expectancy but no one knows for how much longer. Throughout this work we seek to reflect on what it is to be a single mother of a person with Mia’s pathology, to become aware that we live in an ableist society and the importance of changing this way of constituting ourselves. The aim of this project is to bring these issues to the fore to generate support and information networks. Our goal is to make a positive, realistic impact, breaking the romantic and limiting concepts of ableism, ethics and the social hegemony imposed on this complex reality.
I chose that name for the project because Agustina always does everything, or almost, with a smile. It is a smile full of love, empathy, uncertainty and strength. It is a smile that over the years has learned to shed guilt. Her day to day is a great responsibility and a very heavy load that she had to learn to carry alone, however she chooses to live it smiling. That is reflected directly in Mía, her spirit is full of life, through her gestures and her smile communicates it, you can see it, she shines. It is a very strong contrast with what happens to her body, which is not known how much longer it will last. Agustina knows this very well, that’s why she creates, or tries, an environment of constant enjoyment for Mia.