Asdown: The freedom to choose a fulfilling life with a disability

By: Juan Carlos Jaimes*

At three months pregnant, Ana Lucía Jiménez learned that her son would be born with Down syndrome. At that moment, the doctor told her that she had the option to give up her dream of becoming a mother if she and her husband decided to terminate the pregnancy, because “these children are very costly for the system.” A statement that, to this day, Ana does not understand.

Doubts arose for her and her family because they did not have enough information about having a child with an intellectual disability, their needs, or how to face raising them in the future. She sought help, advice, and found Asdown, an association of mothers and fathers that guides and informs all people with intellectual disabilities and their families, without exception, about the possibilities, resources, and tools for a full and autonomous life in society.

After a conversation of more than two hours with Mónica Cortés, director of Asdown, Ana Lucía and her husband, Mauricio Rodríguez, reaffirmed their decision: Pablo would be born as planned, and nothing would stop their dream of becoming parents.

“My perspective on disability changed. We understood that a new family member was arriving, naturally, and that he could have a full life,” says Ana Lucía. Today, Pablo José is 10 years old, a happy and school-enrolled boy who faces the challenges of any child his age and condition.

The story of Pablo and his family has been the mirror of thousands of stories. From a complicated birth, as he was at risk due to delivery complications, to the process of family acceptance of his condition. A crucial step to looking forward, facing stigmas, conventions, and pedagogical challenges, which over time become anecdotes—memories that bring a smile to his mother’s face when she talks about her son’s stories.

Raising a child with a disability is an uncertain path, and the journey through various stages involves challenges and valuable lessons. “The experience with Pablo has been rewarding because I could get early support during a difficult, confusing moment. Many times, I see the challenge for society’s transformation lies in a medicalized vision of disability, one that does not take into account other facets of the human being in their development,” says Ana Lucía.

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Asdown is an organization that was born 18 years ago out of the motivation of several mothers and fathers who lived similar stories and decided to unite to fight for the rights of people with intellectual disabilities. “We agreed that therapeutic support for our children was important for their physical and cognitive development, but that it was not the only thing they needed to grow in society. The actions we have carried out have led us to see how what we do actually benefits all people with disabilities and their families,” says Mónica Cortés, also a member of the Regional Network for Inclusive Education in Latin America, Inclusion International, and RIADIS.

Completely free of charge, Asdown has advised more than 5,000 families and nearly 19,000 teachers on inclusive education topics. “The human being is complex, society is difficult. Many families feel their children are damaged and must be fixed. We need to change that perspective as parents, and it is in this context that Asdown works to become a partner for families, professionals, teachers, and organizations seeking social transformation through inclusion,” says Ana Lucía.

Like Pablo’s, there are hundreds of stories that vindicate the daily work of this Association in its fight to make visible the rights of children, youth, and families living with intellectual disabilities. David Santiago Narváez is a visual artist at the Guerrero Art Academy and is emerging as a self-advocacy leader. Pablo Castro Iregui is a talented chef who is even showcasing his skills on television. María Camila Lozano completed her high school degree after spending a long time in special education, went on to study Business Administration, and today dreams of her own business to employ people who, like her, have overcome adversity by focusing on their abilities and talents.

To fulfill its mission, Asdown always seeks to be at the forefront and constantly train itself. An example of this is its podcast “ABC of Inclusive Education,” aimed at families of children with disabilities, who often go through a real odyssey to get them into school. The podcast, with nearly 4,000 downloads and an audience of 47% outside of Colombia, is a unique support in the region with relevant information for the most frequent queries.

Another example of its boldness is the #ColegioYa campaign —available at colegioya.com.co—, in which they actively fight for the right of all children with intellectual disabilities to attend school despite obstacles, myths, and excuses. Every day, an educational institution closes its doors to a child with a disability: in the past month, more than 100 families have sought Asdown’s help to enroll their children, and only 17 out of every 100 people with disabilities reach higher education, according to the National Quality of Life Survey. “That girl, that boy, or that young person who is rejected for their condition—whatever it may be—also has abilities. Among them, of course, is the ability to learn,” says Mónica Cortés. Those who have experienced trying to find a school for a child with a disability describe it as being in a maze that only leads to closed doors, like riding a carousel of rejections, of revolving doors. “It allowed me to strengthen myself, guide myself, and become a leader and spokesperson for my son’s life projects,” says Ana Lucía Jiménez.

Asdown has been an enthusiastic and committed actor in promoting the full legal capacity of people with disabilities and has been a key player in the approval, implementation, and education about Law 1996 of 2019, which promotes self-determination, using the necessary supports and appropriate safeguards to have the right to decide.

However, the biggest challenge is to constructively combat stereotypes about people with intellectual disabilities, “which make people believe they do not learn, that they are dependent, sick, and objects of pity,” stresses Mónica. Pablo was born thanks to a mother convinced of life and the support of a group of families who went through the same and who firmly believe in the freedom to choose a full life. “Since he was 2 years old, I have seen my son grow and have experienced this journey with hope, leaving my fears aside,” concludes Ana Lucía.

* Director of Tres Mitades and contributor to Dejusticia (juank@tresmitades.com).

This article is part of the #TejidoVivo special, the product of a journalistic alliance between the Dejusticia research center and El Espectador.