Around six years ago I had the opportunity to support a girl with an intellectual disability (ID) at her home. We used to do some domestic activities and went swimming afterwards twice a week. She enjoyed a lot being in the water and I enjoyed sharing with her those joyful moments. I used to talk with her mother about some concerns and challenges she was facing together with her family because of her daughter’s disability. We talked also about positive and motivating issues related with the development and achievements of the ‘swimmer’. But I started to be curious about what the siblings think, feel or experience because of their family situation. For me, that was the starting point of an exciting and sometimes overwhelming journey that has led me to the Netherlands for the second time in four years.
Therefore, having this couple of siblings in mind, I had eagerly read a huge bunch of articles about siblings of people with intellectual and developmental disabilities (IDD) that helped me to spread light on the path I was building. For instance, I discovered that the most unstudied age group of siblings were those in the childhood. Some authors indicated as a limitation on sibling’s research, the lack of information about what young siblings think or how they were experiencing their quality of life as siblings of children with IDD.
As I felt deeply connected with the child I was (and in certain manner I’m still being) I rapidly decided to focus my PhD research on children with siblings with IDD. I am standing aware about the importance of letting children express themselves and listening to them. Well, not only listen, I think it is a matter of taking them seriously. That’s why I was resolute not only to have children in the focus: I wanted children themselves to be the main informants in my research. So yes, I was willing to do research about children, with children and focused on what children think and wanted to express.
Little historical retrospective about children rights shows us that the first universal law to protect children appeared after the First World War, handled by the League of Nations. The Geneva Declaration of the Rights of the Child (1924) recognised for the first time that children have the right to wellbeing, healthy development, assistance and protection. “Humanity owes to the Child the best that it has to give” without considerations of race, nationality or religion. After the Second World War the United Nations General Assembly approved in Paris the Universal Declaration of Human Rights (1948), a milestone in the history of human rights. But it wasn’t until 1959 that an improved and extended Declaration of the Rights of the Child was proclaimed. Principle 6 stablished that “The child, for the full and harmonious development of his personality, needs love and understanding”. Standing on my researcher role, I strongly believe in the need of giving children the opportunity to express themselves freely.
For all these reasons, my advisors and I have decided to put children in the middle of our research. We realised that only by asking them directly we were able to know how they feel; about what they think or what they need. Personally, having time alone with children has lead me to a more comprehensive view of their world, their desires and their fears. Being in a room, alone with the children participants in my research, talking about their experience of having a brother or a sister with an intellectual disability was something that moved me a lot. Childrens confidence when sharing and talking with a stranger about their inner quality of life perceptions, surprised me and was a huge lection of truth. My experience with interviewing children reinforces my perception about the importance of letting children express byspeak forexpress by themselves in the appropriate environment (sometimes more important than the question itself), together with the child’s confidence and his desire to share his story.
To sum up, the lack of children’s research in the disability studies field together with the lack of information about their perceptions of quality of life from their very own voices inspired us about the purpose of our research. So if I have to think about when I feel that I made a difference with my research or how can I contribute to society I would say definitely by spreading the voices of children.
Olga Múries Cantán is a PhD student from Barcelona. Her thesis research explores quality of life’s perceptions of siblings of children with intellectual and developmental disabilities living in Catalonia. Her thesis is funded by the Faculty of Psychology Blanquerna, Ramon Llull University (Barcelona, Spain) and supervised by Dr. Alice Schippers and Dr. Climent Giné.
Olga has been related with Disability Studies in Nederland since 2015 when she did her Educational Psychology master’s internship about family quality of life.