As a lawyer, Flavia Chandía has focused her career on labor issues, but with the arrival of her third son, Valentino, she and her husband had to quickly learn all the aspects involved in caring for their newborn, including the rights of children with multiple disabilities. In this interview, Flavia shares her story as a mother and professional in advocating for inclusive education in her country.
My goal is to strengthen parents knowledge on the subject of inclusive education and the rights of people with disabilities.”Flavia Chandía
It was through my son Valen. We learned when I was still pregnant that he was going to be born with a disability. As we faced the fears of possibly not being prepared to provide for his needs, my husband, Sebastian, and I began to study everything that was related to disabilities.
Valen was diagnosed with hydrocephalus and visual impairments. With his arrival, we got to know hospitals, doctors, and rehabilitation equipment, we got to know a new world. One of these professionals recommended we go to the Helen Keller school here in Mendoza for children with visual impairments.
When Valen was born, the doctors told us he would live in a vegetative state and would only breathe through mechanical support. Today, he lives a good life and maintains control of all his functions while communicating his preferences. He recognizes his siblings, teachers, and other family members. We understand that these sorts of medical diagnoses happen in many families. It adds to the difficulty that sometimes parents don’t always help each other as we should, so there’s still a lot of work to do.
We have two older children, Luciano and Fabricio, and the world is prepared for them, but we want the world also to be ready to receive children like Valen so they are not treated as a rare case.
In our family, it took us some time to adjust to the dynamic when Valen was born since he required a tremendous amount of care from us. At the same time, we were also aware that our other children, Luciano and Fabricio, needed us. What worked for us was to coordinate the whole family to be involved with Valen’s needs.
We have chosen to involve Luciano and Fabricio and don’t hide anything from them. Since they are older, we give them space to have their own activities like sports. My boys invite their friends from school, and Valen likes to listen to them, he gets excited and loves to hear children around. When Luciano and Fabricio’s friends come over, they explain to them that their brother can’t see, so they teach them about communicating through touch.
Through Valen’s school teacher, we learned about Perkins since Hellen Keller’s school was one of the programs Perkins was working in Argentina, Brazil, and Mexico. We became more involved when Karina Medina, Perkin’s representative for Argentina, invited us to meetings that she had with other families, which taught us more about Perkin’s work.
I am a lawyer, and I have enjoyed the legal aspects related to disabilities since Valen was born. I like to guide the families, so they know what steps to take toward their rights and for them to understand that they do not always need to hire a lawyer to represent them.
At the end of last year, I was invited to be the Perkins’ family coordinator in Argentina because my husband and I were one of the most involved parents in the family meetings organized by Perkins. I started to think about how to support the families as I am a mother of a child with multiple disabilities. I know the first overwhelming feeling when having a child with a disability is having the sense that you are alone. Over time we started realizing that many families are in the same situation.
In 2023, we are planning to work with the teachers as they are interested in participating with the families to help bring parents into the education of their children, especially those who are teenagers around adolescence. It is common in Argentina for parents to become less involved in their adolescent children’s school life. We want these parents back to being involved in their children’s education. Since my expertise is in law, I want to also focus on the lack of integration between children with and without disabilities. The goal is to strengthen parents’ knowledge on the subject of inclusive education and the rights of people with disabilities.
If children with disabilities go to a school that can respond to their needs and provide them with good education I believe they will have a better life.”Flavia Chandía
The rights aspect is not very well known in Argentina. If one does not know about the subject, it takes a lot to find information because often professionals say that it does not apply to their children with disabilities even though they do have rights that can give them a better quality of life.
Parents often feel guilty, and my work is to make them feel supported. We can create a network of families with the schools that are part of the Perkins’ project in Argentina. Then you have people from the rural areas who lack support and services, so for us, it is also a challenge to try to involve these families as their situation differs in some aspects from those in urban settings.
We love hiking around the mountains of Mendoza, and we do this as a family, especially with Luciano and Fabricio, since Valen does not enjoy being outside that much. Valen loves going to the school, he always looks forward to it.
This interview was translated and condensed for clarity.