Every morning, Leilane Azevedo, 30 years old, wakes up, makes breakfast for her daughter Maria Ísis, 8 years old, and gets ready to take the two public transports needed to get from her home, located in the district of Mangabeiras, in rural area of Macaíba (RN), to the school. All activities of the day that do not involve Maria Ísis need to be done quickly, while the child is in the classroom. There doesn't seem to be enough time: before solving even half of the day's tasks, it's time to pick up your daughter from school to accompany her to her daily appointments and therapies.
According to a study carried out by the University of São Paulo (USP) in partnership with the Universidade Estadual Paulista (UNESP), 85% of the main caregivers of children with neurodevelopmental disorders are female, with 80% mothers being primarily responsible for their care and maintenance of their lives. Leilane is one of these caregivers. His daughter, Maria Ísis, is diagnosed with Autism Spectrum Disorder (ASD).
“I live for Isis. The issue is very much that. I always have to keep an eye on her: she doesn't go to the bathroom alone, nowadays she eats alone, but she needs supervision because she chokes easily. She needs help with everything, but there is no one to offer that help. When I go to the doctor, it's in the morning, while she's at school, but I go back 'to work' to have time to pick her up. If we go to get our hair or eyebrows done, we feel guilty and want to run back. We always 'leave ourselves aside': then I'll go, then I'll do it…”, reports Leilane Azevedo.
Fatigue is amplified by the lack of structural support faced by mother and daughter in their daily lives. On a daily basis, in addition to having to “raise her daughter for the world”, Leilane finds herself in the position of having to “prepare the world for her daughter”, taking on the role of educator in the face of attitudes that seek to block or hinder the presence of Maria Ísis in spaces.
Support network is still fragile, researchers point out
The tribulations and nuances involving the maternal and female figure are striking in everyday lives like Leilane's. Her testimony is echoed by many caregivers of children with disabilities. This is what reinforces the post-doctoral research by Teresa Cristina de Moraes, entitled “Gender and autism: maternal narratives in the trajectory of care”, conducted by the Department of Anthropology at the Federal University of Rio Grande do Norte (UFRN) at the Education Center and Health Research Anita Garibaldi (Anita), one of the units of the Santos Dumont Institute (ISD) in Macaíba.
The researcher, who has a degree in Psychology, analyzed stories and experiences of caregivers of children with Autism Spectrum Disorder (ASD) cared for by ISD, to understand the challenges encountered in these people's daily lives.
“It is mothers, women, who provide care in this country. In my research, what I found was that they have very few resources, very little social support. There is almost no support network. There are recurring studies that have shown that mothers of children with disabilities suffer from more stress, depression, various types of pathology, especially mental. These numbers are even much higher than the average for the population with children without disabilities, so it is urgent to act in this sense”, says Teresa.
For the researcher, the main point that enables the so-called “quality leap” in health care and assistance for this public is the expansion of the protection and support network. Taking the discussion to educators, health professionals and, mainly, to agents responsible for building effective public policies are some of the ways pointed out by the researcher so that mothers like Leilane can count on a structure that welcomes them and meets their basic needs and rights. not just for their children, but for themselves.
“An example of the helplessness we found is that the highest income found in our research sample was 2 minimum wages for a single person. In other words, in addition to not having a support network, from a socioeconomic point of view, these women are very vulnerable. If you have public policies or socioeconomic conditions, you end up being compensated on one side or the other. These mothers have neither,” points out the researcher.
Some of the main points highlighted by the ethnographic investigation include the burden of care and the uncertainties that permeate the lives of caregivers. Teresa Moraes reinforces the importance of socializing the discussion on the topic and enabling strategies to tackle these issues, not only within the family nucleus, but placing them as the responsibility of the State.
ABOUT ISD
The Santos Dumont Institute is a Social Organization linked to the Ministry of Education (MEC) and includes the Edmond and Lily Safra International Neuroscience Institute and the Anita Garibaldi Health Education and Research Center, both in Macaíba. ISD's mission is to promote education for life, forming citizens through integrated teaching, research and extension actions, in addition to contributing to a fairer and more humane transformation of Brazilian social reality.
