By Charlotte Obijiaku
At the foundation of deliberative democracy lies the premise that decisions should be achieved through fair and reasonable discussions among citizens.
Through mini publics, these processes aim to be representative of the general population. This is, however, hindered by different factors that create barriers to the effective participation of all individuals.
This Deliberative Democracy Practitioners’ Network Session focused on inclusion of those with learning disabilities and visual and hearing impairment. The session sought to explore within that focus:
Photo by Volodymyr Hryshchenko on Unsplash
To aid the discussion, the session included presentations from two organisations with experience of running deliberative processes specifically designed to be inclusive of participants with learning disabilities; the Scotttish Learning Disabilities Observatory (SLDO) and of visual and hearing impairment; Kaleidoscope Health and Care.
In partnership with Talking Mats and funded by the Wellcome Trust, in 2018 the SLDO established the Research Voices project. As part of this, a citizens’ jury of people with learning disabilities was organised to discuss and deliberate on health research. The project was designed to provide insight into participants’ views as well as challenging attitudinal and structural barriers to their involvement in health research. Ultimately, the jurors came up with a set of recommendations on how to make public participation more inclusive of, and accessible for, this specific group of people.
There were also technical and logistical matters that had to be considered at all times to ensure the effective participation of individuals with learning disabilities.
The research showed that inclusivity must be embedded into the design of a project so that people with learning disabilities and their allies are not just an afterthought. This can be done through ‘active recruitment’ (Nicholson et al., 2012). From this starting point deliberative processes can then be adapted without losing core principles by ensuring that adequate support (e.g. accessible materials) is offered.
Thanks to these important findings and conversations, the project is still ongoing and SLDO has been able to influence health research and support other organisations with becoming more inclusive.
In the discussion that followed this presentation, some key points were raised. There was a particular interest in the challenges to achieving an inclusive deliberative process and how these might be overcome. Rhiann McLean, Public Engagement Lead at SLDO, explained that bridging ‘two worlds’ was hard for the facilitators as they had to challenge their own risk aversion that the process would still work. There were also technical and logistical matters that had to be considered at all times to ensure the effective participation of individuals with learning disabilities. An example of this was enabling participants to have peer support and a shared learning experience by having a core cohort of participants with disabilities.
Lydia Paris from Kaleidoscope Health and Care presented their work with the citizens’ assembly in Camden on health and care services in the borough. The process started in person and inclusion was the underlying concept at every step, from the design of the first meeting to the recruitment. For instance, there was the provision of hearing loops, British Sign Language interpreters and captioning, child care facilities, accessible facilities, as well as space to listen and respond to feedback as the conversation developed.
Lydia suggested being clear with all participants about expectations of what is being offered and the need for openness and patience.
When the Assembly had to be moved online due to the Covid-19 outbreak in March, Kaleidoscope Health and Care sought advice from organisations working directly with residents to identify risks, challenges, mitigations and solutions to ensure complete and effective digital inclusion. They identified positive design features such as keeping things simple, offering multiple ways to contribute and communicating before and after the event amongst others. Most importantly they recommended the following four key principles for ensuring inclusivity and adequate responsiveness:
Following the presentation, practitioners discussed any possible tensions there might have been between the different needs of the various participants. Lydia explained that these can be overcome with patience and clear communication. For instance, Lydia suggested being clear with all participants about expectations of what is being offered and the need for openness and patience. Other suggestions included providing support to enable people to turn on/off different support aids.
The discussions in the breakout rooms highlighted various important issues, questions and factors to consider to effectively improve our practices and make these more inclusive of marginalised communities, such as people with learning disabilities.
Through these steps the levels of trust can improve and everyone can learn to appreciate the adjustments made.
Key themes included:
It is essential to have these conversations with ourselves and our organisations to ensure clarity of purpose.
Additional Links from Scottish Learning Disabilities Observatory
Additional Links from Kaleidoscope Health and Care