Europe needs to see itself through the eyes of the millions of Europeans with intellectual disabilities—and act accordingly.
Across Europe, 20 million individuals with intellectual disabilities, and their families, face struggles which are often neglected. The 2023 report on indicators of inclusion from Inclusion Europe brings them to light. While the notion of a ‘European way of life’ has been upheld by the current European Commission, the report delves into concerns—ranging from the denial of basic rights to the absence of adequate support systems—which make that very idea sound hollow to this group of Europeans.
‘Governments don’t even care enough to provide data about the situation. But now, we have this information, and it is not a good look,’ Jyrki Pinomaa, father of two adult sons with disabilities, lamented on reading the report. There is a stark contrast between legal commitments entered into by the European Union and its member states and the lived experiences of persons with disabilities as second-class citizens.
Left powerless
As the EU gears up for elections to the European Parliament in June, questions loom over even its commitment to democracy and the rule of law:
- almost all (26) member states allow restrictions on the legal capacity of individuals with intellectual disabilities—this can turn a person’s life upside-down by leaving her powerless over crucial decisions;
- seven deny voting rights to people under guardianship, and
- 15 restrict individuals with intellectual disabilities from standing for elections.
‘Nearly 50,000 people under guardianship cannot vote in Hungary. We need the right to vote so that decision-makers do not decide about us without us,’ said László Bercse, co-chair of EFOESZ, the Hungarian Association of Persons with Intellectual Disabilities.
The European Parliament adopted a resolution in May 2022, calling for a Council of the EU regulation which would allow everyone to vote in elections to the parliament from age 16, regardless of their legal-capacity status. The council has not however acted on this call, even though in 2011 the EU ratified the United Nations Convention on the Rights of People with Disabilities, which obliges signatories (article 12) to ensure ‘that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life’.
When it comes to education, 700,000 children with intellectual disabilities in the EU are still segregated in special schools and 20,000 receive no education at all. This remains so despite the condemnation of member states in adjudications by the European Committee of Social Rights (against Belgium and France) and the European Court of Human Rights (Italy), arms of the Council of Europe.
It begs the question: why are so many children still not allowed to grow up alongside, and become friends with, non-disabled children? And how can adults with intellectual disabilities be expected to participate in the labour market when they have been deprived of an education?
‘Catch 22’ situation
Employment rates remain below 10 per cent for persons with intellectual disabilities. In a continent grappling with labour shortages, their untapped potential—and that of family members, especially women, deprived of access to paid work because of care responsibilities they have assumed—is a huge missed opportunity for governments and businesses.
If an individual with an intellectual disability does manage to find a job and to earn a normal salary—neither a given—17 EU member states allow of the possibility that entitlement to disability benefits will then be severed. Since those benefits represent a compensation for disability, and a support to participate in the labour market, this is a ‘catch 22’ situation.
The report underscores an alarming failure to ‘deinstitutionalise’ individuals with complex support needs. Fully 750,000 persons with intellectual disabilities are confined in harmful segregated institutions across the EU, while 39,000 live in psychiatric hospitals.
Fifteen years after the Špidla report on the transition from institutional to community-based care, many individuals with disabilities are still not benefiting from any of the advantages of living freely in the community. In 21 EU member states, adults with intellectual disabilities often lack proper housing, having to rely on family members who become primary support providers. This contrasts starkly with typical living arrangements for adults: young Europeans leave their parents’ home on average at 26.4 years.
Beacon for progress
As the Inclusion Indicators become an annual evaluation tool, they can stand more positively as a beacon for progress. They should spur governments, civil-society organisations and businesses to address the pressing inequalities faced by those with intellectual disabilities and their families.
The EU must actively protect the rights of individuals with intellectual disabilities and guarantee that they enjoy equality. As a standard-bearer for democracy and inclusivity, it should lead the charge in dismantling the barriers that hinder the full participation of individuals with intellectual disabilities in society.
Inge Volleberg is Inclusion Europe's researcher and co-ordinator, supporting its work and its members on disability policy and research. She is also co-ordinator of the European Expert Group on the Transition from Institutional to Community-Based Care.
Helen Portal is advocacy and policy officer at Inclusion Europe, where she advocates for the rights of persons with intellectual disabilities and their families.