Social Structures
Author: Clíona de Bhailís is a PhD Candidate at the Centre for Disability Law and Policy (CDLP), NUI Galway. She has received Irish Research Council funding for her research focusing on Article 12 UNCRPD and young people with disabilities. In her previous role she worked as a Research Assistant on the European Research Council funded ‘Voices of Individuals: Collectively Exploring Self-determination (VOICES)’ project.
In 2021 World Youth Skills Day celebrates the creativity and resilience of youth during the COVID 19 pandemic. Young people with disabilities have been particularly impacted by the crisis with schools and services closed, supports limited, and reopening creating additional barriers in accessing many public spaces. Through it all however, they have shown remarkable creativity, resilience and adaptability. This is despite not being consulted or at times even considered by decision makers.
The importance of participation in decision making is often mentioned when discussing research and policy which relates to children and young people. Article 12 of the UN Convention on the Rights of the Child (UNCRC) is well known in this regard and guarantees children who are ‘capable of forming a view’ the right to express their views on matters which affect them. Their views must then be given due weight based on the child’s age and maturity. The applicability of this right to children with disabilities is reinforced by Article 7 of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) with two notable differences. These are the absence of the requirement for a child to be ‘capable of forming a view’ and an obligation on States Parties to provide ‘disability and age appropriate assistance’ to support disabled children and young people to express those views. Therefore, all children and young people, regardless of cognitive ability, should be allowed to express their views on matters affecting them, their views should be given due weight and they should have access to the support if necessary. Further, General Comment No. 7 of the UNCRPD clearly outlines that States Parties have a duty to consult with children and young people with disabilities and their representative organisations about policy development and the implementation of the Convention.
However, often disabled children and young people are excluded from policy consultations or research due to a lack of awareness, inaccessible methodologies or the perceived difficultly associated with ethical approval and working with certain groups. When young persons with disabilities are invited to take part, it is often the ‘usual suspects’ who are consulted and those with complex support needs or communication impairments are not at the table. For my PhD research project, which focuses on the application of Article 12 UNCRPD to young disabled people, I established a youth advisory board. This group is cross impairment and their contributions to the project have been of immense value to the project and my development as a researcher. Unfortunately, no one with complex support needs or communication impairments came forward to participate. This is key limitation of the research and something I hope to address in future work. Throughout the pandemic the voices of young disabled people, particularly those with complex support needs, have been notably absent in decision making or consultation. As we reimagine society post COVID we must ensure disabled people, including young people with disabilities, are involved and consulted. Therefore, researchers and policymakers must set out to actively involve young disabled people in their work. We must consider intersectionality and diversity of lived experience in our recruitment and develop the skills necessary to make these spaces accessible and to support people to participate.
While the participation of disabled children and young people in community or collective decision making is limited, less still is written about their participation in personal decision making. This includes consent to medical treatment, decisions about education, or financial decision making for example. Article 12 UNCRPD guarantees disabled people the right to legal capacity or the right to make decisions with legal consequences on an equal basis with others. It calls for a removal of all tests of mental capacity, or decision making ability, and moves from a ‘best interests’ standard to ‘will and preferences’. General Comment No. 1 also clearly outlined States Parties’ obligations to replace substitute decision making regimes, such as guardianship, with supported decision making. There is an emerging consensus around what this means for adults with disabilities however, little attention has been given to the application of Article 12 to children and young people. While my PhD research in the area is still ongoing, it is clear from the language used that Article 12 is not confined to adults with disabilities. Therefore, young disabled people should not be subject to tests of mental capacity to determine their involvement in decision making or access to supports. I believe Article 12, coupled with the requirement to respect the evolving capacities of the child, places an obligation on adults to support young people to have increasing influence over decision making in their lives. This includes a moving from making decisions in their ‘best interests’ to decisions based on their ‘will and preferences’. Disabled children and young people are more likely to be viewed as vulnerable or requiring protection so this will require a considerable shift in thinking.
At a recent webinar on legal capacity rights and the #FreeBritney movement, the Honorable Kristin Booth Glen, retired New York Surrogate Court Judge and Director of Supported Decision-Making New York, highlighted the importance of disabled people viewing themselves as decision makers. To address this Booth-Glen advocated for teaching decision making in schools and from an early age supporting disabled children and young people to express their views, will and preferences and use support. Such initiatives support the young people to develop decision making skills while also altering societies perceptions of disability and who can or should make decisions. Such initiatives are required as we reimagine post pandemic.
This year the UN asks us to reimagine youth skills post-pandemic and it is therefore the ideal opportunity to reimagine skills across a number of areas which relate to children and young people. We need to develop researcher’s and policy maker’s skills to engage with young people and in particular children and young people with disabilities. We must reimagine the ways in which we consult with or invite young people to participate to ensure they are accessible. We must reimagine how we teach young disabled people about decision making to ensure they themselves as decision makers. Finally, we must support them to express their views, will and preferences and give them the opportunity to develop decision making skills.