SOOTHE webinar: Learning about mental health from people with intellectual disabilities

 

This morning I attended the SOOTHE webinar Learning about mental health & well-being from people with intellectual disabilities. The SOOTHE project is working on mental health in people with intellectual disabilities, with the aim of developing an international community of practice. The webinar was bilingual, with some presenters speaking in Spanish but presenting slides in English. I found this quite refreshing, given usual Anglophone hegemony at events/in science globally.  

A key output of SOOTHE has been its E-quilt: an artistic means for expressing understanding of mental health. The quilt is still accepting submissions at this link. On the broader point of art, Professor Wolter Paans highlighted how artwork by people with ID can be included in an exhibition with an entry fee, underscoring the social value of the artwork.

Research in understanding mental health with people with ID was discussed. Some people with ID had quite biological understandings of mental health, even though they linked challenges to mental health with negative experiences in the past (feelings of rejection was often a theme, as well as not feeling heard/understood). There was a bidirectional effect; it seemed that participants not only gave their own viewpoint, but participation in the project broadened the participants' own understanding of mental health.

Beyond understanding mental health itself, the session went on to discuss innovations and ways of improving mental health. Among ideas discussed were relaxation/mindfulness workshops, musical spaces, use of technology, spaces to reduce stimuli, getting professional support to talk about difficult emotions, and enjoying meaningful activities in company of others. Social interactions as well as faith/religion were highlighted as helping to foster a sense of connectedness. Unsurprisingly, COVID-19 cropped up, with negative emotional impact of lockdown restrictions.

Pablo Alvarez discussed a Learnovate approach: going from ideas to implementable solutions, using storyboards to workshop how ideas might be implemented (e.g. physical activity, social interactions, music activities). The project involved working though how to make music available and accessible online, and how to share it. The team developed a prototype app, then had a Q & A session to feedback on user experience with the app, which can be used to create agenda for daily activities. When I say "team", it should be noted that there was a consistent focus on co-creation with people who will be using app. 

In a final discussion, one panelist sounded an optimistic note of how people are increasingly understanding that we're all on a continuum of mental health. COVID-19 was described as a natural experiment no one asked for, meaning that people in general have no choice but to use technology if they wish to communicate with others. The participation of people with ID in the process was highlighted, so there's an ongoing need for the information generated by the project to be available in an accessible way for people with ID, and that people with ID might be able to recruit others and become mental health advocates.

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