TEXT: ISABEL PRESTEL IMAGES: PLENA INCLUSIÓN
In Spain, the federation of associations for people with intellectual disabilities, Plena Inclusión, has been fighting for over 50 years for the rights of people with intellectual disabilities. Its director, Enrique Galván, tells us about the real situation of this population group, their advances and challenges.
As you browse the Plena Inclusión website (www. plenainclusion.org) you discover another way to live with and feel about intellectual disability: without hang-ups and demanding full rights. The right to a dignified life, to full citizenship, participating in social and political life: with education, justice, access to housing and a working life… Like María, who works in a school cafeteria because she enjoys spending time around children. Or Diego, who enjoys working in a supermarket, where he has already completed job training as a shelf stocker and is really popular with his colleagues.
And that inclusion of this population group as fullfledged citizens is what the work of this association pursues and the data speak for themselves. Thanks to its federations corresponding to the 17 autonomous communities, plus Ceuta and Melilla, it serves 140,000 people with intellectual or developmental disabilities. Thus 235,000 family members are attended by 4,000 professionals, as well as 8,000 volunteers, in 900 organizations. These figures are the result of no less than 53 years of intense work with a clear mission: “With a clear ethical commitment, offer support and opportunities to ensure that all those with intellectual or developmental disabilities and their families are able to fulfill their quality of life project, as well as to promote their inclusion as full-fledged citizens within a society of justice and solidarity,” as stated in their yearbook and on their website.
All this based on a family spirit firmly linked to their rights and the promotion of top-quality assistance. This is how, little by little, they have made such great achievements. Enrique Galván, the director of Plena Inclusión, tells us about one of the objectives reached: competitive examinations for people with disabilities, which have been held since 2011. “This is a major achievement, since it implies a change of mentality on the part of the public administration, labor unions, colleagues… It’s taken so long to achieve this, but not because there is any problem with these people; rather, it’s with the context in which they live, the models determining what one can and cannot do, and the stigma attached to having an intellectual disability. Once we overcome this limitation that society imposes on itself, we discover that they can indeed contribute as actors, workers, volunteers in NGOs, etc. But significant challenges remain.”
What does intellectual disability entail?
To fully understand what we are talking about, we must first know what we mean when we speak of intellectual disability. As stated on the Plena Inclusión website, intellectual disability “involves a series of limitations affecting the skills people acquire to function in their daily liv es and which enable them to respond adequately to different situations and locations. Intellectual disability is expressed in relation to the environment. It therefore depends both on the individuals themselves and on the barriers or obstacles around them. If we achieve an easier, more accessible environment, people with intellectual disabilities will encounter fewer difficulties and, therefore, their disability will appear less restrictive.” In addition, they insist that people with intellectual disabilities, just like everyone else, should enjoy opportunities for advancement if they receive suitable support.
According to data from IMSERSO (Spanish Elderly & Social Services Institute), at the end of 2015, the citizens who should enjoy full rights included 268,633 people with a certified intellectual disability greater than or equal to 33 percent. People for whom Plena Inclusión requests that they be heard with the same level of attention, rights and importance as any other person on such fundamental issues as education and housing, for example. They not only seek inclusive education, but rather they are fighting to prevent people with disabilities disappearing from the educational system at the age of 16 or 17. With regard to housing, one of the options they feel is most interesting is that of the supervised apartments, where they can live independently and develop their life project. “We’re asking the law to recognize aid for independent living. For example, personal assistance in the community and not in a care home. A move from a very protective system with a highly structured portfolio of services to support more closely linked to the person,” Galván states.
In fact this is one of the keys to the future Plena Inclusión pursues for people with intellectual disability: “We use a person-centered planning system, which helps us focus on their desires, skills, aspirations… Previously, the focus was on their limitations, but now the reports should state everything those individuals can do – their potential.” In this regard, attempts are also being made to steer the legal viewpoint from disability to ability. Enrique Galván: “On this question, there is draft legislation being worked on with the Ministry of Justice with which we are satisfied. The idea is to transform the way disability is handled into a system offering support to make decisions, instead of eliminating decision-making capabilities.”
Right to motherhood
As regards their rights, there remain some fields to be conquered, such as sexuality or motherhood. In particular, the elimination of the forced sterilization of women, which runs counter to the United Nations Convention on the Rights of Persons with Disabilities. Plena Inclusión considers this measure “a way to apply violence on the body of a woman when it is clearly against her wishes.” In fact, after the adoption of the electoral reform which allowed 100,000 people with intellectual disabilities to vote in Spain’s last elections, an amendment to the Criminal Code to prohibit non-consensual or forced sterilization of people with disabilities is the next legal “fight” for the associations.
It appears that the prospects are good. Last October, the Citizens party registered a non-legislative proposal demanding such a change. And, in February, the Executive announced its intention to establish a commission of experts with the aim of addressing this question.
“Intellectual disability is expressed in relation to the environment. It depends on the individuals themselves and on the barriers around them. If we achieve an easier, more accessible environment, people with intellectual disabilities will encounter fewer difficulties and, therefore, their disability will appear less restrictive”
Protection of childhood and adolescence
Another struggle relates to the acceptance that these people are more vulnerable to abuse. For this reason, in the words of Enrique Galván, “there need to be prevention plans outlining specific provisions.” Precisely last January, Plena Inclusión submitted to the Government a whole battery of proposals for the amendment of the draft law on the Integral Protection of Childhood and Adolescence against Violence, so as to take into account greater and better defense of the rights of these childr en. Inés de Araoz, from the federation’s legal department, declares: “We need the law to include our demands because, at present, the figures we possess relating to vulnerability reveal a highly worrying scenario for children with intellectual or developmental disabilities and their families.”
Galván asserts that “these boys and girls are the ones who most often suffer violence. The change in the law is important, but it must be accompanied by increased social awareness of the gravity of this phenomenon.” For this federation, the future law should include measures in the family, educational, social and health spheres that need to be implemented in a coordinated fashion in order to prevent, detect, intervene and support these children and their families.
All the initiatives of Plena Inclusión have a very simple goal: to ensure that people with intellectual disabilities can find what we all look for. As Enrique Galván sums it up: “Live a full life, travel, work, get into trouble, make your own decisions… what anyone’s life entails.”
With Together We Can, everyone wins
Achieving the inclusion in society of people with intellectual disability inevitably requires them to first enjoy a working life that enables them to develop as individuals and as professionals. Fundación MAPFRE knows this and, to help make this a reality, in 2010 it launched the program Together We Can. Its objective is to “promote the integration of people with intellectual disabilities and mental illness by fostering relationships between companies and social entities, adopting an innovative approach that advances the labor integration of this population group,” as stated on its website.
Over these nine years, it has provided people belonging to these groups with grants for training and internships at companies, with a view to them being able to gain a foothold in the labor market. So much so that more than 3,504 people with intellectual disabilities and mental illness have found a job thanks to this program. Two of them are Joel Martínez and Aridai Casas who have been working at the Cal Boig restaurant in Sabadell since 2016 and 2018, respectively. And, like them, there are now many more.
The success of this initiative has to do with the fact that everyone wins. Firstly, the companies which receive economic incentives thanks to public subsidies and grants, while simultaneously fulfilling their Corporate Social Responsibility strategy. Then, we have the workers with intellectual disabilities themselves, who earn their place in society. And, above all, society at large, which achieves a clear symptom of progress, sharing our values of living harmoniously together.