The EU and Member States must do more to promote the legal capacity of all persons with disabilities (PWD) to guarantee their fundamental rights. Governments must support autonomous decision-making and reject the regressive protocol to the Oviedo Convention
All EU Member States and the EU have ratified the United Nations Convention on the Rights of Persons with Disabilities (UNCPRD). Under Article 12 of this convention, signatories recognise that PWD
enjoy legal capacity on an equal basis with others in all aspects of life and that measures to limit legal capacity must be
for the shortest time possible.
Yet many EU countries restrict the legal capacity of PWD, depriving them of fundamental rights, such as the freedom to make their own medical decisions, have control over their property, or seek justice when harmed. This is especially true for those with intellectual disabilities, psychosocial disabilities and for women with disabilities.
The right to make decisions – Progressing Legal Capacity for persons with disability, a hearing by the European Economic and Social Committee (EESC) on 15 November 2021, examined how the EU can support change.
Chaired by Pietro Barbieri, president of the EESC's Thematic Study Group on disability rights, and moderated by Group members Marie Zvolská and Hana Popelková, the meeting heard from representatives of disability and human rights organisations and the UN. Testimonies included personal experience of the current situation along with good practice to promote personal decision-making.
Maintaining a person’s legal capacity is the key through which people can have access to legal safeguards. Without this, there is only partial access to people’s rights, Mr Barbieri said.
Break the status quo
We need support that will help us to make a good decision on our own and not someone who will decide for us, said Senada Halilčević, former chair of the European Platform of Self-Advocates and Vice-President of Inclusion Europe.
Fifteen years after the adoption of the UNCPRD, more people in Europe are deprived of legal capacity than who have had it restored with such support.
We are still waiting for decision-makers to show us a real and honest intention to change the guardianship situation.
Women face particular challenges. When deprived of their legal autonomy, they are more prone to sexual exploitation and abuse, often victims of forced contraception, sterilisation and abortions, have their children taken from them and are restricted in their right to start a family or marry.
When we speak of equality and rights for woman and major steps forward in policy, the fundamental right to make your own decisions is out of reach for many people, said Ana Pelaez Narvaez, Vice-President of the European Disability Forum and Vice-Chair of the UN Committee on the Elimination of Discrimination Against Women.
Create commissions that foster access to justice, to teach courts to listen to persons with psychosocial disabilities, proposed Jolijn Santegoeds of the European Network for (Ex-)Users and Survivors of Psychiatry (ENUSP), who recounted her experience of forced intervention in an institution.
In this context, the Council of Europe’s proposal to legalise forced detention and treatment – known as the protocol to the Oviedo Convention – was a major concern to the committee and speakers.
It will put a new barrier to access to justice and will maintain the status quo, Ms Santegoeds said.
What the EU can do
The root of persistent legal discrimination against PWD is their invisibility, explained Gerard Quinn, UN Special Rapporteur on the rights of persons with disabilities. He suggested that EU Member States focus less on equality and instead promote the idea of the personhood of PWD.
There would be real EU added value if some programme was established to start a new paradigm, he proposed.
One interesting approach is Austria’s July 2018 law on legal capacity, described by Carina Pimpel of Lebenshilfe Austria. This law overturns the guardianship approach in favour of one based on inclusive decision-making and supported autonomy.
Even when a court appoints a representative to make decisions for a PWD, this can only be for three years. Legal capacity is always retained by the PWD. The representative cannot decide highly personal issues such as marriage and can only make medical decisions as a last resort.
More is needed throughout the EU. Despite progress in some countries, the changes made do not implement the UNCPRD in full.
Provide the political context for the transition from substitutive to supportive decision-making, urged Kristijan Grđan of Mental Health Europe.
National human rights institutes are a rich source of good practices. They study laws, investigate institutions and complaints, and raise awareness to change attitudes, all with input from PWD.
Research is often publicly available, explained Ekaterine Skhiladze of the European Network of National Human Rights Institutes (ENNHRI), which in 2020 published recommendations on independent decision-making.
Summarising the hearing, Mr Barbieri issued a call on the troubling Council of Europe proposals.
Work towards not ratifying the Oviedo declaration and pushing states not to do so, he said.
Otherwise, unequal treatment of PWD will continue.