Mothers of people with disabilities or rare diseases, known as atypical mothers, asked for public support programs, in a public hearing at the Commission for the Defense of Women’s Rights of the Chamber of Deputies, this Friday (11).
The deputies Tereza Nelma (PSD-AL) and Léo Moraes (PODE-RO), who requested the debate, cited a 2019 survey by the Brazilian Institute of Geography and Statistics (IBGE) according to which in the Brazilian population over two years of age, there are 17.3 million people with some disability, which represents 8.4% of the country’s population
“And the care for this population always falls on a female figure, in general, the mother,” emphasized Tereza Nelma. She said that facing the limitations of these children in a family, in general, generates suffering, frustration, and fear. “For this reason, exercising motherhood in these situations is a complex experience,” she pointed out. She added that autistic children, for example, have difficulties carrying out day-to-day activities, demanding more from parents and caregivers. The deputy stressed that many mothers are forced to give up their professional careers, affective relationships, and social life.
Photo Pablo ValadaresAgência Câmara de Notícias
The parliamentarian also highlighted the lack of networks that support mothers psychologically and financially. “According to data from 2012 released by the Baresi Institute, in Brazil, around 78% of parents abandoned the mothers of children with disabilities and rare diseases before their children turned five years old”, he mentioned.
According to her, many parents “cannot bear the grief of abandoning the idea of the ideal child.” The deputy defended a psychological support program in the public health network for these mothers since many turn to NGOs, which cannot handle the demand. She added that it is Parliament’s role to formulate multisectoral public policies to support these women.
Tereza Nelma is the committee’s rapporteur for Bill 2859/20 by Deputy Léo Moraes (PODE-RO), which establishes the National Week of Atypical Maternity, to be celebrated annually in the third week of May.
Overwhelmed atypical mothers
Speech therapist and activist Maria Klivianny said that Rondônia already has a state law for this purpose. She also highlighted the absence of public policies for these mothers. According to Klivianny, they are stereotyped as warrior mothers. “But what they are are overworked mothers,” she pointed out.
In her opinion, one cannot romanticize the tiredness of these mothers. The activist said that suicide among atypical mothers is very high. “That the government can see them as the people with the rights that they are,” he defended, highlighting the need for mental health care so mothers can exercise care for their children. According to Maria Klivianny, these mothers must be assisted by the Psychosocial Care Centers (Caps), and many live in food insecurity.
Mother and activist Deusina Lopes stressed the importance of providing conditions for atypical mothers to work, even receiving the Benefit of Continuous Provision (BPC). She proposed that policies for these mothers be part of the next government’s plan. In addition, he asked for encouragement and support for responsible parenthood by parents of children with disabilities.
Government vision
The national secretary for the Rights of Persons with Disabilities, Cláudio Panoeiro, stated that the purpose of the bill under discussion – to create a national week of atypical motherhood – is to establish the visibility of this group, but considered that perhaps the proposal will not reach its goal. “The problem here is that mothers reject expressions such as warrior mothers, little mothers, overcoming mothers,” she observed.
Panoeiro recalled that the movement of atypical mothers emerged from mothers of children with an autism spectrum disorder. And he suggested, “instead of creating a specific date, bringing this into the autism movement itself, so as not to have two dates.” According to him, it could be done through an amendment to Law 12,764/12, which establishes the National Policy for the Protection of the Rights of Persons with Autistic Spectrum Disorder. “The risk of creating a week of its own is not achieving the intended visibility,” he added.
Deputy Tereza Nelma highlighted the need to conceptualize, in the project, the atypical mother to define whether it is only the mother of people with an autism spectrum disorder or whether it also covers mothers of all people with disabilities or rare diseases. Maria Klivianny evaluated that the concept covers mothers of children with any disability and that April 2, National Autism Awareness Day, does not represent all mothers.
The general coordinator of Perinatal Health and Breastfeeding of the Ministry of Health, Janine Selva Ginani, supported the proposal. She stated that the existing public policies for this public were also the result of the struggle of these women. “One of the advances that I highly highlight is the inclusion of an instrument for early screening of the risk of autism spectrum disorder in the child’s handbook,” he mentioned. According to Janine, the ministry’s campaigns emphasize the need for a support network, division of labor, and paternal presence. “As a ministry, we embrace these women and want to work together.”
Source: Agência Câmara Notícias
What do you need to know
The “atypical mothers” issue is closely related to Sustainable Development Goal (SDG) 3 of the 2030 Agenda, which addresses Health and Well-being. To learn more about the importance of Health and Well-being in the lives of atypical mothers with children with rare diseases, click here. Want to know more about the 2030 Agenda? Click here.
It is also closely related to Sustainable Development Goal (SDG) 5 of the 2030 Agenda, which addresses Gender Equality. To learn more about the impact of gender (in)equality on the lives of atypical mothers with children with rare diseases, click here. Want to know more about the 2030 Agenda? Click here.
Decent work and economic growth could ease the burden on atypical mothers. It is what Sustainable Development Goal (SDG) 8 of the 2030 Agenda is about. To learn more about the positive impact of decent work and economic growth on the lives of atypical mothers with children with rare diseases, click here. Want to know more about the 2030 Agenda? Click here.
