Independent Living—or Vida Independiente, as it will be called in this article—has grown in Spain via the internet and is now running a pilot project with personal assistance in several urban areas.
Since Franco’s death in 1975, Spain has undergone democratization and a huge economic development. Traditionally, personal assistance has been provided by the family or by staff in institutional housing. I ask Míriam Enríquez Moscoso, who is attending ILI’s 25th anniversary celebration in Stockholm, about how this works in rural Spain today.
“I have no idea,” says the 32-year old Catalonian from the city of Barcelona, where she grew up and studied the humanities and biology. Miriam is currently coordinator for a personal assistance pilot project that is run by the users in cooperation with the disability division at the municipality of Barcelona.
Spain adopted an anti-discrimination and accessibility act in 2003 and the Personal Autonomy and Dependent Care Law (39/2006) in 2006, commonly known as the Dependence Act. State laws regulate minimum requirements, but each autonomous region determines what is considered to be social service. Spain has 17 such regions, including Catalonia, which is one of the largest and most affluent.
Regional parliaments can amend national laws, which allows for major variations within the country. Article 19 in the Dependence Act addresses personal assistance, but applies only to certain types of studies and work. The act classifies disabilities into three categories and only those with the most serious level, “critically dependent,” are entitled to personal assistance. A social worker assesses the individual based on body function, but not on what the person does in life or the actual needs of the individual.
The Act grants a maximum of three hours of assistance, though some regions may grant up to five. A reimbursement system based on income and assets has also been adopted, which means that the individual may receive a bill for assistance afterwards. Miriam is not at all satisfied with this law and is fighting for a new one.
“Four to five hours is not an independent life,” she says.
She has four hours of assistance daily, but that is exactly what she wants and needs.
One way to show a better and more effective alternative is to practice a different system. Spain has had an online Independent Living group called Foro de vida independiente since 2001 that is the hub in of the Spanish IL movement. The forum has grown from its three initiators to 750 users who discuss a new collective consciousness that was previously lacking.
In 2005, this group presented a proposal for personal assistance to the municipality of Barcelona. The pilot project began in November 2006 and ended on December 31, 2008. Other pilot projects are running in a few locations in Spain with a total of about 200 users. Nine people with physical disabilities currently participate in the Barcelona program.
They receive a maximum of twelve or thirteen hours of assistance. Each person has an individual plan with a budget for both assistance and administration, which covers the cost of the IL office. Vida indepediente does the hiring, but assistance users sign a contract transferring the right to hire to the association.
“The user has the actual right to hire,” says Miriam.
Assistants were found by advertising online or on university bulletin boards.
The pilot project in Madrid, with 62 users, was extended until 2011, but the project in Barcelona is on the decline and at risk of closing. Negotiations are underway to let the European Network on Independent Living (ENIL) conduct a review to see whether the project lives up to the standards set by the European Centre for Excellence on Personal Assistance (ECEPA), an EU project in which nine European IL organizations collaborated to determine the ideal national legislation for personal assistance.
Javier Romañach is another prominent figure in Spanish Vida independiente. He writes that the problem with the 2006 law is that it is based on the medical model and blames people for being too diverse.
“The law is not consistent with the new UN Convention,” he says.
He and Miriam Enriquez are not talking about people with disabilities, but of the functional diversity that can be found among people. This approach is reflected in the idea that it is important to actively participate in political parties and trade unions.
“Without a presence there, we can’t effect change.”
Miriam doesn’t believe in sitting around and waiting for politicians.
“I don’t understand that kind of thing. If we get turned down, we’ll work even harder. If we don’t achieve success through direct negotiations, we’ll have to hit the streets.”
For the past two years they have organized a march in Madrid with speakers on a flatbed truck and participants in costume. The gay movement is a role model.
“We just pull on a wig,” laughs Miriam.
A thousand people may turn out for the march, but the mass media are indifferent.
“Only the local media cover the event.”
The background to the annual march is a group of activists who demanded changes in the assistance law by locking themselves in a government office in Madrid. They wanted to meet President Zapatero, but after 24 hours were only allowed to meet the social affairs minister, who promised to change the four points in the law that the group demanded, but failed to keep this promise. Nor did this spectacular campaign receive much attention from the media.
“We’re only visible when we want euthanasia,” sighs Miriam. “The media never think of us in terms of rights, that we are workers and citizens.” But Miriam does not give up.
“We do not intend to tolerate more violations of our human rights,” she says. “We will be noticed both on the streets and in the courts.”
Míriam Enríquez Moscoso was interviewed by Emil Erdtman on November 28, 2008