In Portugal the Convention on the Rights of Persons with Disabilities (CRPD) is not being complied with. Disabled people are prevented from living independently, in several aspects.
The Convention points out that disabled people should have the equal right to live in the community and the freedom to make their own choices, but in Portugal, when they do not have their parents or informal caregivers (mostly family relatives) to give them assistance, disabled people have no choice except for institutionalization.
Article 19 of the CRPD states that the State Parties shall ensure that: a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement; and b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.”
However, in Portugal, there is no opportunity for choice, there is no personal assistance for disabled people and support services are insufficient, unstable and inadequate. There are some at-home support services, which are not enough and do not take the person’s free will into account. People often experience indignity and invasion of privacy, since they cannot choose who assists them and each day a different person shows up in a hurry to get the job done and get out. And then, there is institutionalization, which is funded by the State and (even then) by the small benefits attributed to the disabled persons themselves.
In a documentary, Eduardo Jorge, who has been a strong activist for Independent Living in Portugal, was forced to leave his home and move to an institution, because he didn’t have the financial resources to hire a personal assistant. The institution receives a fixed amount from the State to have Eduardo Jorge there and takes 75% of Eduardo’s income (an amount negotiated by Eduardo, as the previous base charge was of 90% of total income).
Institutions can receive up to 950€ per month from the State to host a disabled person (and additionally receive 90% of their income) but disabled persons can only receive 88€ per month from the State to have a person assisting them in their own home.
The Independent Living movement in Portugal gained strength in 2013, when Eduardo Jorge began a hunger strike at the door of the Portuguese Parliament. It didn’t last long since the Minister for Labour and Social Solidarity pledged to enact an Independent Living law that included personal assistance. However, time passed and no effort was made to implement Independent Living in Portugal. So, in the following year, Eduardo Jorge travelled 180 km on his wheelchair, from his village to the Ministry in Lisbon, to protest about the lack of legislation on disabled people’s rights and to deliver a letter to that same Minister.
On December 3rd 2013, the “International Day of People with Disabilities”, the Portuguese Movement of the Outraged (dis)Abled People (Movimento dos (D)eficientes Indignados, in Portuguese) hosted a conference on Independent Living, supported by the Lisbon Municipality, where Adolf Ratzka was invited to talk about his experience of personal assistance in Sweden.
From that conference, a Pilot Project on Independent Living was developed by the Lisbon Municipality, with public consultation and the assumption that it should be managed by disabled people. So, on December 3rd 2015, the first Pilot Project of Independent Living based on personal assistance began in Lisbon, funded by the Lisbon Municipality and managed by the Independent Living Centre. This project includes five disabled persons who live or work in Lisbon, during a period of two years, in which participants should hire their personal assistants and manage their hours of assistance. The aim of the project is to prove that Independent Living is possible and to serve as a guide for the implementation of a national project funded by the State, and subsequently for a proper independent living law.
The Independent Living Centre is a non-profit association only managed by disabled people, founded in the previous year to manage the pilot project in Lisbon. In addition, we want to promote the Independent Living philosophy to the general public, disabled people and policy makers. We are working to replicate the pilot project in Porto with the support of the Porto Municipality, and we have been hosting conferences and movie-debate sessions on this topic.
Regarding activism on Independent Living, in September 2015 disabled people had a protest in front of the Portuguese Parliament, organized by the Portuguese Movement of the Outraged (dis)Abled People, in which people were dressed as prisoners within a structure with bars, demanding the right to Independent Living, including compliance with accessibility laws and the increase of social benefits and pensions.
Since the elections in November 2015 of the 21st Portuguese Government, we have, for the first time ever, a disabled deputy in Parliament of a left-wing party named Jorge Falcato, who has been a major activist for the rights of disabled people. In the new Socialist Government, which has the support of left-wing parties, we also have a disabled woman as Secretary of State for the Inclusion of Disabled People, Ana Sofia Antunes, who at our last conference on the 5th of May stated that public tenders will now be open to Independent Living projects by the end of this year, supported by funds from the EU to the new Community framework.
Things are moving forward and we are living in a time of change. We keep hope alive and we are fighting towards that.
On Being Independent – documentary
The author of the video, Vera Moutinho, journalist of the Portuguese newspaper “PÚBLICO”, won the Dignitas Prize in Digital Journalism category for the documentary “Being on Independent”, which also received an honorable mention in the AMI (International Medical Assistance, NGO) Awards – Journalism against Indifference.
Written by Carla Branco, Independent Living Centre, Portugal