Fifteen years after the first Independent Living Congress in Tenerife, Spain (2003), it was time to reflect on the experience of over 15 years of work – the successes and the mistakes – and the effect these changes have had on people’s lives. ENIL was pleased to be able to support the Congress, which was organised by FEVI – the Spanish Independent Living movement.
During the Congress, the term functionally diverse was used instead of disabled people. The meaning of Independent Living (IL) with Personal Assistance (PA) was approached from very different angles and looking at different types of support needs. Below is a brief summary of all the interventions, which can be watched in full on the links provided (in English; for Spanish versions, click here). At the end of the conference, a manifesto was read out that will be used to lobby for Independent Living.
Brief summary of all the interventions:
In the opening session, Kapka Panayotova, ENIL President, gave a brief overview of ENIL’s history. She explained the importance of lobbying as a grassroots organisation, from a human right perspective, for the right to live independently and to participate in the community, with personal assistance. She noted that we need to overcome our differences within the disability movement to realise IL.
Representatives of the Valencian Government supported the objectives of the Spanish IL movement. Helena Fernando, the Secretary for Equality and Equal Opportunities, said that the approach of the IL movement can help fight all forms of social exclusion, regardless of the target group.
Eva Liz Moen, from ULOBA, showed a triangle where the user needs to be on top, not the opposite, as in institutions. Services need to support us to realise what we want and involve us, as the CRPD stipulates. She went on to explain how ULOBA, a cooperative, emancipates disabled people by providing citizen-controlled PA.
Jorge Falcato, a Member of Parliament in Portugal, presented the country’s pilot project on PA. This came after a hunger strike by Portuguese activists. They project started with 5 persons with physical disabilities.
Nadia Hadad, from ENIL Board, explained the challenges ENIL is facing in advocating for IL.
This was followed by a presentation of the “Horizons” project by Juan José Maraña (FEVI) an IL activist and philosopher from Galicia, where one can find a lot of cows. He compared these to disabled people inside institutions, unable to enjoy the beauty of the region, despite their nice environment.
Mario Toboso, from the Institute of Philosophy – CSIC, presented the “Functional Diversity Paradigms”, intersectional research from the IL perspective.
“Sexualizing functional diversity to politicize it” was presented by Antonio Centeno (FVID). He called for a discussion on sexuality and sexism, noting that the IL model is larger than fighting against institutions. Services should support us, so we can decide how, when and with whom we share our bodies. ‘Sexassistance’ service has been a big success, with 200 assistances.
Stig Langvad, from the CRPD Committee, explained the General Comment No 7, on the involvement of disabled people. Stig lived as a young man in an institution, but since 1978 has had personal assistance 24h a day, 7 days a week, 365 days a year. The essence of IL is a right to live in society where legislation supports this right, and has been developed together with disabled people. Stig spoke about the “illegal restrictions” Member States impose on disabled people’s right to live independently, by offering only institutional/residential facilities as options. They also reduce or remove individual’s legal capacity, and their right to self-determination. He noted that families, caregivers or authorities must not exercise control over or restrict the choice of an individual.
“Personal Assistance: from User’s Perspective” was presented by Ismael Llorens (FEVI/FVID). He noted that liberty is a state where freedom of movement must be guaranteed by having PA, in order not to become slaves, depending on others or being jailed inside our own houses. The Spanish legislation often does not fund enough hours of PA and is very different from one region to another. Some traditional organisations speak about IL, while they run institutions themselves, which are contradictory with the IL principles. So, the goals that we need to work on are direct payments for PA, empowerment of people with functional diversity, universal accessibility, deinstitutionalisation, self-determination, and training for PA, as well as respect for human rights for all of us. He also spoke about IL indicators to evaluate PA systems.
Carmen Morales (SOLCOM/FVID), mother of Alexandro, a man with intellectual disabilities, spoke about living as a citizen. Although CRPD prohibits special services where people are segregated, these ghettos still exist. Special schools, separate workplaces, separate transport – none of these are in line with the CRPD. She explained how she uses the General Comment No 5 in her organisation and daily life to advocate for her son and others to live included in the society. She also trains parents on Article 19 CRPD.
The sociological background of IL was explained by Miguel A. V. Ferreira (UCM). He said that no one can be independent – it’s an empty concept from the 19th century.
Laura Fernández Cordero (FVID) spoke about decision-making by persons with functional diversity. She used pictograms in her presentation, in order to make everyone understand that persons with intellectual disabilities are often discriminated in accessing PA services. She noted that all information must be accessible, in easy to read, allowing everybody to participate on an equal basis as others. The user perspective was given by Laura Aínsa Castañer, entitled “Give me a foothold and I’ll make my own decisions”.
Adolf Ratzka (ILI) highlighted the importance of the quality of life, with PA, in a pre-recorded video. He gave an overview on how it is in reality – the low budgets, the lack of services, so people rely on their networks or end up in an institution – all in violation of Article 19 CRPD.
“Visual functional diversity and their approach to personal assistance” was presented by Mertxe Sánchez (FVID). Historically, people with visual impairments were supported by volunteers and could hardly manage despite huge personal efforts. She spoke about the need for PA and universal accessibility.
Katja Villatoro (FEVI/FVID) spoke on “Gender and Functional Diversity: An Independent Living Approach”, noting that she was glad to see so many women in the movement. Women with disability are often not seen as women, are victims of gender violence and ignored.
José Antonio Nóvoa (FVID) presented a proposed law for IL, based on the CRPD. There were a lot of businesses established in the past to provide care under the Social Integration Law, so a new law is in the making, to see how the available economic resources can realize IL and human rights for people with functional diversity.
Lourdes Arrieta, a self-advocate, shared his story through assisted technology, on how he fought to live independently.
Finally, Laura Moya talked about mobility in her town (Saragossa), accessibility and the research they are carrying out. She presented an online tool with accessibility maps to facilitate movement, but also where complaints can be made.