Doña Myriam and her current partner are at home in his house when we arrive at the arranged time. As reason given for our visit was that we make home visits to map out the living conditions of people with an intellectual disability, and to hear what they and their families need.
Doña Myriam has had 9 children, two of whom have died. Two of her children were born with an intellectual disabilit y: Loyla now 38 years old, and Daniel 33. For the last 5 years they have lived in a separate ‘house’ made from wood and plastic, adjacent to the simple home of Doña Myriam’s partner. A granddaughter of Doña Myriam has her own little room there too and provides the most essential care to Loyla and Daniel in exchange for free board and lodging.
Doña Myriam herself has some health issues and lives with a daugher in a different part of the town. She works three days a week as a cleaner in the hospital, which gives her at least some regular income. Her new partner does not relate well to Daniel and Loyla and prefers not to be in contact with them.
Loyla and Daniel
Mother Doña Myriam is not very talkative. Her answers to my questions are brief, and we do not get into real conversation. The two children never went to school. They can walk, but do not talk. They never leave their home. They do not take medicines and short of the odd bout of the flu are healthy. Their brothers and sisters ignore them. They never have visitors. Doña Myriam never received any support from any organisation for her two children. And what will happen to them when she dies? She has no idea.
We are allowed to have a look at Daniel and Loylas place ,a ‘self-explanatory’ scene. The only furniture in the room is a wooden bed. Daniel sits crouched down on the floor, playing with his fingers and does not respond when someone talks to him. Loyla sits at the edge of the bed. There is a bit of contact, but she stares ahead with a glazed look and picks her nose. There is no obvious bond between the mother and her two children. She views the children as mentally ill and does not consider herself the carer.
I ask if they enjoy biscuits. ‘For sure’, says the mother, but I first need to unwrap them, otherwise they eat everything, paper and all. Both respond when I put the biscuits in front of them, and both of them devour them in one big mouthful.
Lives nipped in the bud
A right to a dignified way of life? Whose responsibility would it be to guarantee that? Somehow in this case the mother-child bond has broken down. And somehow there has been too little support to avoid this breakdown in contact between mother and children. The consequences for Daniel and Loyla are dramatic. Two lives that had a certain potential to flourish are nipped in the bud due to lack of care, love and stimulation, as if these lives are of no value to anyone.
Will our project be able to do something for them? Time will tell!
Astrid Delleman, i.c.w. Stichting Vivir Juntos