TOKYO-2017 People / -
Life Force: What love can save
Oblivion can become a silent weapon of contempt and discrimination. All human beings needs a bonds of love and support to develop in a healthy way. However, society has often shown that stigma, prejudice and disregard are the most common ways to make a person with a disability became invisible.
Jorge was born in a small rural town in Argentina 37 years ago with a congenital malformation affecting both his upper and lower limbs. He also suffers pterygium in both eyes invading his cornea, an ocular pathological condition that worsened severely due to the lack of specialized treatments.
With only a few weeks of life both the doctor who brought him to the world and his own family environment, told his mother that it was better if he let the child die because he would still be unable to survive in this world by himself given his condition. One year before his birth, her mother had a serious infection and was treated with a thalidomide-based drug.
In the mid-1950s, the same drug caused thousands of babies being born with congenital malformations around the world. It was prescribed by medical specialists as anti-nausea and over-the-counter sedative for pregnant women. It was mistakenly considered harmless. These regrettable events highlighted the teratogenic effect of the drug and, despite thousands of complaints, thalidomide continued to circulate for several decades without any type of pharmacovigilance sanitary control of the patient. This was the case of Jorge.
But Jorge has an incredible life force and his desire to live was so powerful that he persevered despite the circumstances.
He is married to Vero. She was born with myelomeningocele and had to undergo several surgeries on her spine to be able to stay upright and had an intercranial valve placed in her brain to decrease pressure. They fell in love eight years ago.
Sadly and unfairly they seem invisible to social services. They receive very little economic support from the Argentine state. Vero needs rehabilitation treatments but the health system imposes bureaucratic obstacles and Jorge was never recognized as affected by thalidomide by the Argentinian State.
Despite everything they have been able to build a world for their little daughter Ángeles.
Unconditional support, accepting each other, love and tolerance are the pillars that allow them to stay strong and keep going.
This story seeks to highlight the reparative force of desire and the bonds of love in the face of the social aberrant injustices that threaten life itself. Also seeks to break with the preconceived ideas and disapproving looks of many sectors of society called "normal" about the possibility of a person with a disability to develop a full and complete life in all its aspects, perhaps seeking to illuminate from the simplicity and authenticity of human relations, that which belongs to the order of the elemental so that our society is constituted in equality of rights.