2. Empowerment: their own advocates

“People with disabilities should empower ourselves to make sure our rights are respected, and I’m not sure we’ve done that,” said Josep María Solé, lawyer and head of Foundation Girona Guardianship. “On many occasions, people with disabilities don’t have a voice. Those around us speak on our behalf, with the best intentions but often misguided paternalism. It’s partially our fault, because we aren’t aware of our rights so we can’t exercise them.”

Solé stressed the tendency towards care that turns to institutionalization instead of individual action in the community. For example, “a mental patient in Catalonia gets €500 if they live at home but €2,000 if they are in a care center.” Fernando Fantova, an independent social-services consultant in Bilbao, believes the pyramid of social protection is changing. Before, social services were the end goal, with no importance given to any of the other elements of the system, and people with disabilities had to make do with finding a place there. Now, “They want to be full citizens with all their rights. They demand to break free from a state whose social services took those with disabilities from cradle to grave and move towards one that is more inclusive and transversal in terms of diversity.” As explained Margarita León, of the Institute of Government and Public Policy (IGOP-UAB), “It’s too easy to just talk about healthcare. It’s complex and must all be interconnected.”

Gary Bourlet is the co-founder of the Learning Disabilities England initiative and has been working to defend the rights of people with learning disabilities for more than thirty years now. After often being rejected by society, as he explained in an interview in The Guardian (in which he remembers how he was kept away from other children for fear they would catch his epilepsy), “We want people to speak for themselves on the topics that concern them. We want to have the same rights to be seen, to vote, to be included, to have the same opportunities in social life, in education and in employment as everyone else.”

Some of these opportunities come from technology, which “has revolutionized communication and participation,” but it also has a negative side. Among other things, because “many people with disabilities can’t afford it or don’t have the support to be able to use it, and because technology isn’t a substitute for human contact.”