Screening of “Struggle to have a life – Disability Politics in Sweden”

UN House Brussels
5 May, 17:00 - 19:30

Welcome by Christina Meinecke, UN Human Rights Regional Representative for Europe

On behalf of the Office of the United Nations High Commissioner for Human Rights (OHCHR) I would like to extend a warm welcome to you in the UN House!

We are very pleased to host the European Network on Independent Living, and indeed all of you who are joining us today, for this celebration of Independent Living.

We have worked closely with ENIL for over 15 years to promote the right of persons with disabilities in Europe and the issue of community inclusion & deinstitutionalization of persons with disabilities, children, older persons and other groups is a long-standing priority issue.

An important reason for this is that independent living and being included in the community is a very central and all-encompassing right of the UN Convention on the Rights of Persons with Disabilities, a treaty which has been ratified by the European Union and all of its 27 Member States. When it comes to rights, everything stands or falls with being included in the community, being active agents of one’s lives and having services in place that enable you to be part of society like anyone else. The right to independent living embodies a very positive philosophy of thriving in the community.

Yet, this is far from reality for many persons with disabilities. Institutionalization remains a major human rights challenge in Europe - as human rights bodies consistently highlight - and despite the many efforts to replace institutions by community support services and personal assistance. EU funds have significant potential for positive change in this area, and we will call for the future EU budget to prioritize investment in human rights-based deinstitutionalization programmes in the Member States.

Today, we are celebrating the right of everybody to flourish in the community. We will watch the documentary “Struggle to have a life - Disability Politics in Sweden”. I will not spoil the movie by saying too much, but it is a truly powerful and personal depiction of the uphill battle to stay afloat under budget cuts and - seemingly arbitrarily imposed - legal and administrative barriers. It is a stark reminder to never take rights for granted. But it is also a film about the Independent Living movement pioneered by Adolf Ratzka. It shows how independent living can – and should - be done.

Before handing over to Nadia Hadad, Co-Chair of ENIL, please allow me to wish you all a nice evening!

Background

The European Network on Independent Living (ENIL) are longstanding partners of OHCHR-ROE and consist of a network of (mostly grassroots) disability rights activists working to promote independent living and community-inclusion of persons with disabilities in line with Article 19 of the CRPD. Their advocacy at EU level focuses primarily on the use of EU funding to support deinstitutionalization reform in the Member States. ENIL have been critical of Member States using EU funds to (re-)construct institutions or segregating settings for persons with disabilities and the EU’s lack of monitoring in this regard. Like OHCHR-ROE, ENIL is a member of the European Expert Group on Transition from Institutional to Community-based Care.

On 5 May 2025, OHCHR-ROE are hosting ENIL to mark European Independent Living Day, celebrated by the disability rights community. To mark the day, ENIL will screen the Swedish documentary “Struggle to have a life – Disability Politics in Sweden”, filmed by director Caroline Ardbo. The film focuses on the situation of personal assistance in Sweden in the past decade. Once a frontrunner on independent living of persons with disabilities, the film highlights a system in decline where persons with disabilities are increasingly met with (legal and administrative) barriers and budget cuts preventing them from being fully included in the community.