The complete statement is available for download here.
On the occasion of the European Independent Living Day on 5 May, thousands of disabled citizens will hold protests and events in a continent-wide day of action. The objective is to warn against concerning trends of fundamental rights regression.
For example, in Sweden, the first country to introduce a law enabling widespread access to personal assistance, as many as 71% of applications are being rejected. In Belgium, the national government is introducing aggressive austerity policies. In the same spirit, the Brussels region has decided to terminate the personal assistance budget. The European Union is on course to adopt legislation restricting the right to legal capacity, despite numerous warnings by the UN Human Rights bodies.[1]
Jonas from Sweden is a wheelchair user and had personal assistance for many years which enabled him to marry and have two children. To implement the cuts mandated by the government, authorities started to dispute his need for personal assistance and to randomly cut his hours. Having is hours of personal assistance per week reduced by more than a half, made it increasingly difficult to take care of his family. Jonas challenged the decisions in court which ruled in his favour but authorities ignored the decision. Due to the extreme stress for him and his family, his wife divorced him.
“The last 10 years about 3000 individuals have lost their right to personal assistance, many more have had cuts and thousands are living with the fear that they can lose their right to personal assistance. The consequences for the persons who loses the right to personal assistance is that they be trapped in their own home or have to move to institutions.”
Jonas from Sweden, has to fight constantly to keep his personal assistance which he needs to life.
Sonja from Brussels has been receiving the personal assistance budget, which has enabled her to live like everyone else and to be an active person. The termination of the pilot project will have dramatic consequences for her and the other recipients, since the homecare service they will now depend on only supports very basic activities within one’s own home.
“The implementation of the personal assistance budget has always been restricted. Only 44 people were admitted. Instead of increasing the funding to accommodate the 200 people on the waiting list, most likely encouraging further applications, the Brussels region decided to end the pilot project. At the same time, funding keeps flowing into care homes which violate our rights, reduce our quality of life and are more expensive”.
Sonja, disabled woman from Brussels who lost her personal budget
ENIL Brussels Office is marking the Independent Living Day by organising a screening of the documentary “Struggle to Have a Life – Disability Politics in Sweden” which criticises the current dangerous trends by showing the impact cuts to the country’s personal assistance scheme are having on those that rely on them.
“This powerful documentary movie, that I had the great pleasure of presenting in the Swedish Parliament, offers a deeply moving portrayal of life with a disability, shedding light on the vital role of personal assistants. It revealed the everyday struggles and triumphs that are often overlooked. A truly eye-opening and compassionate story that stays with you.”
Malin Danielsson, member of the Swedish Parliament for the Liberal Party
The screening, hosted by the UN OHCHR Regional Office for Europe, will take place on 5 May from 17:00 – 19:30 at the UN House in Brussels. Participation is possible upon registration. All participants of the documentary are available for interviews at prior request.
Other activities to promote the right to independent living are taking place in Belgium and countries across Europe. Disability rights activists from Brussels are organising a protest rally which will start from 13:30 at Carrefour de l´Europe/Europakruispunt. The Portuguese Independent Living Movement is organising protests in eight cities across the country. The Independent Living group in San Marino is organising a high-level conference, followed by meeting with the Heads of State. Further activities will be published on our Blue Sky account.
The UN watchdog for the rights of disabled people, the Committee on the Rights of Persons with Disabilities, has criticised the destructive policies employed by the governments of Sweden and Belgium, among others, when it comes to the funding of personal assistance.
Recently, the Committee advised the European Union to stop its legislative activities against the right to legal capacity (see article 12).
The European Network on Independent Living is calling on the European Union and all member countries to terminate policies which undermine the rights of disabled citizens and to implement the recommendations of the Committee on the Rights of Persons with Disabilities. Personal budgets and personal assistance schemes need to be fully funded.
We urge all actors to stop regarding expenses on those services as a loss and factor in the benefits to society and the economy which come from the increased activity of disabled people. Recipients of personal budgets frequently employ personal assistants and thus contribute to the creation of jobs.
We call on the European Union to use its competences to redirect funding away from segregating services like residential care and sheltered workshops, which violate rights and are unsustainably expensive, and to the rights affirmative and cost efficient alternatives. We ask for a reform of EU Funds and competition law.
Nadia Hadad, Co-Chair of the board of the European Network on Independent Living (ENIL) said:
“It is more than 14 years that the European Union and the Member States ratified the United Nations Convention on the Rights of Persons with Disabilities. Still the rights we were promised are not a reality. We are still treated like second class citizens, living segregated lives. That is why we are reclaiming our rights now. We have had more than enough patience.”
ENIL´s shadow report to the Committee on the Rights of Persons with Disabilities is available here. A more detailed policy document is available here.
Journalists and interested parties are welcome to join the protests and activities. We are happy to establish contacts with interview partners or supply more information and details. Contact Florian Sanden, ENIL Policy Coordinator, florian.sanden@enil.eu.
About the European Network on Independent Living – ENIL
The European Network on Independent Living – ENIL is a Europe-wide network of disabled people, with members throughout Europe. We are fighting for an end to discrimination, for inclusion and equal rights, for full self-determination of disabled people.
Contact information
ENIL Brussels Office vzw/asbl
Mundo J – 6th Floor
Rue de l’Industrie 10
1000 Brussels
Belgium
[1] https://enil.eu/crpd-conclusions/, Joint statement by the Special Rapporteur on the rights of persons with disabilities, Gerard Quinn, and the Independent Expert on the enjoyment of all human rights by older persons, Claudia Mahler (8 July 2021) Toward Greater Coherence of International Law. Reflections on the Hague Convention (2000) on the International Protection of Adults
