This is one story as part of the Voices of People with Disabilities during COVID19 Outbreak series
Names have been changed to protect the individuals mentioned in the story.
We have gathered two accounts of mothers of children with deafblindness in Naucalpan de Juárez (Mexico), to understand better what their personal situation is like. Every deafblind children and adult communicate in a different way and therefore have varying accessibility requirements. Very few children are completely deaf and blind; most have some degree of functional vision and hearing.
“Information is not available, and I know that if my child gets sick, he is very vulnerable due to his complex disability. If he gets sick, where are we supposed to go? Who covers the costs. I am really not informed”, says Marco’s mother.
Marcos is a 5-year-old deafblind child who doesn’t walk and has an intellectual disability. “Not being able to attend school and loosing his routine has really affected him”, explains his mother. All day care centers have been closed and the child is unable to receive his daily therapies, essential to his development. Marco’s father lost his job as a chauffeur due to the confinement and the economic situation is hitting those with precarious jobs the hardest. “What are we supposed to do? We receive no help or support to prevent contagion as we are in a village”, says Marco’s mother. “I’m desperate and my savings are running out. We have no support from the government nor my family. Right now, my main concern is being able to feed us all, including my other daughter”, she explains. They have not received any specific information on persons with disabilities or guidelines that must be followed by deafblind children and their families. “We really don’t know what precautions must be taken or special measures”.
This family reports they have not received any financial help since the child was born, only food during a year, which was taken away from them once the government regime changed. “We are entirely dependent on the state”, she explains, meaning politics can have a direct impact on the wellbeing of persons with disabilities and their families.
A similar situation is shared by Sergio’s mother. Sergio is a 16-year-old deafblind teenager. His mother explains she is very upset as she has been obliged to work part time to be able to look after his son, meaning her salary has been halved. “I really don’t earn enough to feed us all and buy Sergio’s medicine”, she says. This raises the issue of parents of children with disabilities, who have had to stop working or are unable to take care of their children full time. They are put in a very difficult position where they have to choose between working and earning money, or taking care if their children and becoming financially unstable.
