Going on vacation without parents. Live alone or with friends and take care of everyday tasks. Work and save for a personal project. Being able to form a couple and enjoy sexuality. Adulthood, among other things, is about that.
However, for many people with disabilities who go through that stage of life, their decisions and desires are constrained by a long series of prejudices and barriers.
Crystallized in the social imaginary as “angels” or helpless and unproductive beings whose livelihood will always depend on the protection of someone else, and despite the fact that independence is one of the rights enshrined in the Convention on the Rights of Persons with Disabilities Achieving the greatest possible autonomy still implies for them to have to retrace a path marked by years of overwhelming and stigmatization.
“It is about the right to live a full and equal life with the other members of the community,” sums up Elizabeth Aimar, lawyer, founder of the Legal and Social Assistance Network (RALS) and mother of a young man with cerebral palsy.
“This means that the person with disabilities can develop all their possibilities and respect their right to decide where they want to live, if they want to study, travel or how they want to dress”, adds the specialist.
It is about the right to live a full and equal life with the other members of the community.
Elizabeth Aimar, Legal and Social Assistance Network (RALS).
According to the latest National Study on the Profile of Persons with Disabilities, there are 3,571,983 people in the country who have some type of physical or intellectual limitation, which implies that more than 25% of households have at least one member with this condition According to the social model of disability, this occurs “between the deficit of people and the barriers that society opposes them,” explains Karina Guerschberg, director of the civil association Senderos del Sembrador and coordinator of Casa Vergara, a project of social housing for young adults with intellectual disabilities.
In that sense, although in recent years there have been advances such as the Disability Law and the development of new strategies focused on people and their needs,
The medical paradigm – which opposes the social gaze – continues to gravitate strongly.
For every thing that is required, you have to go to the doctor for authorization and then fight for coverage. In the set, all people are seen under a standardized, normalizing scheme, and this favors the idea of helplessness, “describes Aimar,
for whom the family, as a fundamental actor before any possibility of autonomy, “is pushed by the same system towards overprotection”.
According to the latest National Study on the Profile of Persons with Disabilities, there are 3,571,983 people in the country who suffer some kind of physical or intellectual limitation, which implies that more than 25% of households have at least one integral with this condition.
Guerschberg notes that this is accentuated when it comes to people with intellectual disabilities:
“There is a question of denial, they are childish and it is believed that ‘they cannot or are not interested’ in doing something different.”
Indec data show that, for each household where at least one person with a disability lives, it is estimated that there are two others who do not have that condition. “For 20 years I have been attending about 50 cases per week and what I see is that, when a person has multiple or intellectual motor disabilities, he usually lives with the family,” says Aimar. “What we try to encourage from RALS is that they have a house next door, a room with independent kitchen or look for devices that allow independence,” he emphasizes.
That is the spirit of Casa Vergara. There lives Paula Pino, who is 42 years old. It was not an easy process for her independence, neither for her nor for her mother, but it was worth it: now meetings and matedas are visited and combined by telephone. And if for some reason Paula prefers to be alone at home, she explains: “I tell my mother that day, better not.”
In order to fully enjoy the right to an autonomous life, people with disabilities need support. “We don’t talk about types of disabilities but about support needs: they can be extensive, intermittent or generalized. Some need support in many areas of their lives and others for very few,” says Guerschberg.
According to the specialist it is essential to talk about personal assistants, since without them it is very difficult to develop autonomy. This is a figure that, within the framework of the benefits provided by the disability law, “entered but was not regulated, and finally became a ‘home assistant’, which is not the same,” says Guerschnerg. He explains that the big difference with other types of benefits (such as the therapeutic companion or the nurse), is that the personal assistant does not respond to the guidelines of the treatment, but to the needs and desires of people, such as going to the movies or shopping. “The challenge is not to interpret savagely, not to go over what the person may want or to define what we need,” he adds.
Paula stays throughout the talk with LA NACION and invites mate. She, like her classmates, lives there with Karina, her husband and Yanina Bordón, the assistant for much of the week. There are also staff that rotates with different time loads. Charly Llerena, Camila Soriano and Daniela Gaspari are other members who spend almost all week at home, while some members of the day center come and go with different schemes, from stating stays when they feel like it or putting together others with some regularity .
In Casa Vergara everyone gets up at the time they want, but everyone in one way or another meets for breakfast before 9, which is the time they walk to the center of the day, a few blocks from there, to perform different activities until the afternoon. When they return they are also free to do what they want, such as watching TV or using the computer. Many of those who participate in the house were not well in their homes and, in the process of autonomy, both they and their families recovered quality of life. Guerschberg says: “New designs of supports and care are currently being worked on that allow people with disabilities to be protagonists of their lives and their families, to live better”
Personal assistants do not respond to treatment guidelines, but to the needs and desires of people, such as going to the movies, a football game or going shopping.
Leandro López, director of Taller Sumando, a space focused on promoting autonomy through different proposals, explains that
in countries like Spain -one of the most advanced in terms of disability policies and pioneer in the development of convivial homes-,
there are assistants who stay all day, half a shift, once a week or even, in cases of very autonomous people, once a month.
For its part and with respect to the
need to strengthen policies that promote autonomyFernando Galarraga, executive deputy director of the National Agency for Disability, says that “the most important thing is to incorporate the theme of disability into the public agenda and that it is transversal to the policy of the entire State.”
The most important thing is to incorporate the theme of disability into the public agenda.
Fernando Galarraga, deputy director of Andis.
Galarraga, who has a visual impairment, ensures that myths must be overthrown so that when making decisions, it goes in line with what is stipulated in the Convention on the Rights of Persons with Disabilities, “They are an autonomous, full life, with more or less support.”
Aimar extends that autonomy in disability is totally linked to social, cultural and economic resources. In our country the inactivity rate of people with disabilities is 64.1%. La Usina is one of the organizations that works to influence that reality. From its social enterprise Redactivos offer products and services based on alliances with leading companies. In addition, Gota, his communication studio, has a team of creatives with intellectual disabilities.
In our country the inactivity rate of people with disabilities is 64.1 percent.
Javier Lioy, director of La Usina, reinforces the need to understand that “we are all responsible for generating support and opportunities”. “As people without disabilities, by not assuming our role as generators of conditions, we restrict the right of those with disabilities to choose freely within their means,” he says.
Luis Rodríguez directs the social organization Puentes de Luz, in San Martín de los Andes, which among its many projects – such as a day center and a marmelade venture -, today promotes that of Casa Tuya, a future cohabitation dwelling.
As a reference in the subject and as a brother of an adult woman with Down syndrome, he insists that independence does not exist if it is not articulated with the family. “In our project we work a lot with the concept of family aging, through workshops and meetings with experts, and so parents understand that the best they can leave their children is as much autonomy as possible. They should warn and anticipate that when we get older, other disabilities begin to appear, “says Rodríguez.
Parents understand that the best they can leave their children is as much autonomy as possible.
Luis Rodríguez, Bridges of Light.
In that sense,
Aimar talks about “empowering families” so they can demand what they need and puts the focus on “estate planning”: “We must be able to think in advance who is going to take care of our sons, daughters or relatives when those who assist them are already there.”
To promote economic autonomy, in Taller Sumando, for example, they carry out four ventures, one of them, of craft beer. The experience, López says, is led by a 24-year-old with Down syndrome. ”
The family was allowing him to do things on his own, starting by traveling alone. Thus, the boy took a brewery course with the brother-in-law, started working and even was able to collaborate financially in renting a holiday home with the rest of the family“he details.
Rodriguez adds: ”
Family members, unintentionally, sometimes stretch decisions because they are overprotective. But that implies that at the time of missing parents, it is often social works or other actors who decide the future of the person“.