14 March 2019

European disability law: DARE to dream

Although things have improved for people with disabilities in Europe in the past decades, the work is far from done. People with disabilities typically face an accumulated pattern of disadvantages. “You might be able to get out the door, but are you then able to get on the bus? And if you do, is there a job or school that is accessible for you?” Professor Lisa Waddington coordinates Maastricht University’s involvement in a new project: Disability Advocacy Research in Europe (DARE). This new Marie Sklodowska-Curie Innovative Training Network (ITN) provides funding for 15 early-stage researchers to conduct their PhD research.

Lisa Waddington

Each PhD candidate – three of whom will be employed by UM – will be supervised by academics from two different disciplines and institutes. Compared to DREAM, DARE has a stronger focus on policy reform and how to bring about actual change, and pays more attention to the lived experience of people with disabilities as a legitimate source of knowledge to inform research. Which, Waddington says, is still not common practice.

Expert on your own life

“A few decades back, society would try to change people with disabilities because there was something ‘wrong’ with them. And if that wasn’t possible, they were put in an institution or given a disability pension. They weren’t even seen as experts on their own lives. It was, and sometimes still is, doctors and rehabilitation experts who are seen as the experts.” A lot has changed with the UN Convention on the Rights of Persons with Disabilities (CRPD), which came into force 10 years ago. “It helped to change our understanding of what a disability is. It’s not the impairment that makes you a person with a disability, it’s the interaction between the impairment and the environment that creates the barriers. The disabling role of the environment is seen as fundamental, and that’s reflected in the UN Convention and in our research.”

The UN Convention, ratified by over 170 countries, created greater awareness of disability rights among policymakers, and Waddington sees a genuine desire to act on it. Knowledge of how to do so, however, is often lacking. “Their need for guidance is a key driver for DARE. We hope to train the fifteen early-stage researchers to meet that need.”

Three UM PhD candidates

The three PhD candidates employed in Maastricht, who will start in September, will all investigate topics related to giving people with disabilities a voice. “We also want to train them in cooperating with people with disabilities.” One will study how courts frame and interpret the concept of disability. The second will explore barriers to political participation, while the third will focus on the collective voice in the global arena: how have organisations of people with disabilities interacted with for example the United Nations? “We welcome applicants who have personal experience of disability. The European Commission has earmarked some funds to support them, which is great, because in DREAM we weren’t able to employ a particular applicant with severe physical disabilities because there wasn’t enough funding to arrange the support she needed. That was really upsetting.”

Supported decision making

Waddington stresses the importance of support for people with disabilities to participate in society. “There are countries where they are denied a voice through the denial of legal capacity. They’re not permitted to make decisions about their own lives, or even vote. The UN Convention makes it quite clear that disability cannot be a reason for the denial of legal capacity. Supported decision making is important, not substituted decision making.” This also applies to reproductive rights, in Waddington’s view. “Women with intellectual disabilities have been forced to undergo abortions or sterilisation. I think that, with the right support, you can make the consequences of having a child clear to every woman and she can make her own choice.” The fact that some countries have different abortion deadlines for foetuses with or without a disability strikes her as discriminatory. “It would help if a disabled child were not presented as a disaster to pregnant women or a burden for society.” This is also one of the topics a PhD candidate in DARE will work on. “It’s an ambitious programme. The situation for people with disabilities is improving, but there’s a long way to go.”

By: Femke Kools (text), Sacha Ruland (photography)