Maria Herrero accompanies her son Genís to sailing classes at Barcelona's Port Olímpic.Carles Ribas
They are tired, exhausted by everything that being the main caregivers of minors with disabilities entails: doing it many times alone, and the lack of institutional support.
The recognition is so little that they do not even know how many there are.
There is no data.
They seek to make visible that, if with health there is a universal and well-oiled service circuit;
with disability, accessing services or aids is a constant struggle.
And, with a feminist look: because it is a fact that some parents ignore the day to day.
They raise their voices to warn that their situation harms the rights of their disabled children.
That is why they are promoting a Union of Mothers in Functional Diversity from Catalonia.
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”The bottom line is that we take care of ourselves.
We are from the generation of individualism, and we are discovering that either we go together ... or nothing.
They are our children, we are not going to put them in a residence, but it is very tiring;
and they have rights, but the biggest cause of loss of rights is that we are exhausted ”.
This is Maria Herrero, from Barcelona, mother of an autistic child and one of the promoters of the Union.
“Those of us who are in this are the lucky ones, the ones who have time to look at their phones.
Being together is essential ”, he defends.
And remember also the mothers of people with disabilities as adults.
"We do not want to give pain, or money, but rights and public services"
"We do not want to give pain, or money, but rights: community and public services. And here feminism is a key argument ”, she defends, given that“ care work falls on mothers, in our group there are mothers who care alone or as a couple, but there is an over-representation of fathers who stop caring ” . “There are parents who abandon care because they get sick, because the situation overwhelms them… and we continue to hear the discourse that 'the child is much better with you'. It is as if they told you that you have no right to oxygen. As if there were hierarchies, less oxygen has touched us ”, he sighs.
From Cerdanyola del Vallès, Montse Nieto, mother of a 17-year-old boy with a disability from birth (with mobility and cognitive problems) who has no diagnosis also points to the abysmal difference in services depending on where he lives: “It is not It is fair that the services you have access to depend on where you live, the comparative loss of quality of life for these kids between a big and a small city is brutal ”. Not all municipalities have home care services, he exemplifies. "Inclusion exists while they are young, but from adolescence on the differences become larger," says Nieto, warning that their family situation "is very fortunate", because they form a "team" with their partner. They both have jobs and organize themselves. Even so, the main caregiver is her. Officially,because the administration asks for a reference. And because "the mental load" of appointments with doctors, specialists, education, activities ... she carries it.
"There is over representation of parents who stop caring"
“In our society having a child is an ideal world of healthy babies.
Nobody prepares you for what will come when a disabled child is born, it is a parallel world, a Matrix where it is essential to group together, if you look at there are lots of associations set up by families ", he defends, vindicating the need to"
lobby
, pressure the administration to condition policies, that someone thinks of us ”.
Sonia Guzmán, from Badalona, has a 14-year-old son with severe cerebral palsy from birth.
Although the father helps her, she lives alone with the boy.
"Disability confronts you with loneliness, people disappear and luckily social networks are a great virtual family," he says in reference to the idea of the Union or other existing support networks, such as Afecto Mariposa.
"You have to win everything"
She is one of the “lucky ones” that the CUME has, a subsidy for the care of the minor, which in her case implies a reduction in practically total working hours and salary in charge of the social security mutual until the age of 18.
But he regrets "that it is a fight, it seems that you have to win everything."
“I have spent many years working and leaving my son with three or four different people, now I am calmer… but already thinking about when it will end.
It cannot be that the aid ends at 18 years of age, because the need does not end ”, he exposes and denounces that“ society has them as second-class citizens ”.
“They are not going to contribute and they are an expense;
It may be true, but they are people ”, he defends.
"Health is universal, social rights are not"
Another issue that some of these mothers emphasize is that the resources allocated to social issues are closely linked to economic deprivation. "It is really fair that those who have no income have more aid," reflects Montse Nieto, "but you become ashamed of having a salary, the paradox of being left out of many resources for having two salaries."
For example, the adapted house this summer in her town filled all the squares with families without resources, she says while declaring herself in favor of the copayment. "Public health is universal, social rights are not," says Nieto.
With the pandemic, she laments, "everyone has filled their mouths with the importance of care, but no one remembers us." "It seems that we do not have the right to be sick and many times we feel sick," she says, highlighting that, in general, disabled people are sensitive: "When they see you tired or sad they realize it."
Raquel, a monomarental mother, who lives in a town in Tarragona and has a four-year-old boy with completely dependent cerebral palsy, survives on the minimum income and some help from the family. In addition to the obstacle course of aid, he recounts absurd situations such as having to renew papers every six months, "when the situation is permanent" and laments "the lack of sensitivity" that he has sometimes encountered in social services. “There are comments that hurt a lot, like a professional asking you why you have gone to the social services center with the child, as if you could leave him alone. Or phrases that are a lack of sensitivity, like being told that, with your situation, you will never have a normal job ”.