Main Body
Chapter 2: Simon Porter & Stephen Muirhead – Scotland
Speaker Bios
The roots of the Patients Council goes back to 1989 when the old Thomas Clouston Clinic was closed and patients were moved to the REH. Patients decided they needed a stronger voice. They wanted to have their opinions heard. So they formed a Patients Council which eventually was properly constituted as the Royal Edinburgh Hospital Patients’ Council in 1993. We continue to strengthen the voice of patients and former patients through independent collective advocacy. We continue to build on the foundations established by patients over twenty years ago (REH Patients Council, n.d.).
Background
Current Status of Article 12 in Scotland
In 2006, the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) was adopted and subsequently ratified by both Scotland and the United Kingdom (UK) in 2009. The UNCRPD sets a mandate for ratifying countries to ensure “access by persons with disabilities to the support they may require in exercising their legal capacity” (Stavert, 2021). Despite the growing global interest in supported decision-making and significant international legal reforms, Scotland has yet to see substantial changes in this regard (Stavert, 2021).
Scotland currently operates under existing laws like the Adults with Incapacity Act 2000 (AWI), designed to uphold the personal autonomy of disabled individuals. However, concerns have arisen in the past regarding the AWI’s compliance with Article 12 of the UNCRPD. This concern is due to its requirement that incapacity must be attributed to ‘mental disorder’ (including mental illness, personality disorder, or learning disability) or ‘an inability to communicate because of a physical disability’ (Equality and Human Rights Commission, 2018, p. 4).
Recently, in June 2023, the Scottish Government responded to the independent review of mental health, capacity, and adult support and protection legislation conducted by Lord John Scott KC. The response outlines ongoing efforts to align with the UNCRPD’s requirements, including reforms to the AWI, revisions to the guardianship process, and collaboration with partners to facilitate the development and implementation of effective supported decision-making approaches (Scottish Government, 2023).
Current Status of Activism in Scotland
Advocacy around Article 12 and supported decision making continues in Scotland and the UK. Organizations such as CAPS Independent Advocacy, AdvoCard Community Collective Advocacy, and the Scottish Independence Advocacy Alliance continue to advocate for the development of robust supports to fully implement supported decision making and non-coercive mental health interventions. Recently, in 2021, a team of four educators and an organizer with lived experience of mental health services began the Mind Our Rights Education Programme which develops and facilitates human rights workshops and presentations within Mental Health Service Provision in Edinburgh (Mind our Rights Education Programme, n.d.).
Video Presentation
Key Points
- Patient Advocacy Legacy: More than 30 years ago, patients at the Royal Edinburgh Hospital established the Patients Council.
- Diverse Interpretations of Human Rights: The Patients Council holds varying interpretations of human rights.
- Article 12 Implementation: While Article 12 has been partially implemented, significant work remains to fully realize its objectives. Injustices persist, and the REH Patient Council is committed to pursuing a more equitable future.
- Recognizing Societal Barriers: We must increasingly acknowledge societal barriers to rehabilitation and other related factors.
- Auto-Ethnography’s Unique Perspective: Simon and Stephen talk about learning from Anne O’Donnell who employs auto-ethnography to provide a distinctive perspective on human rights stories, enabling individuals to narrate their experiences in their own voices.
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In the Chat:
Anne O’Donnell: “I’m Anne, Mad Studies lecturer at Queen Margaret University. I’m at home in Leith in Edinburgh this afternoon. I am here to listen and learn, in particular, to find out how these things play out in Canada and Columbia”.
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Human Rights Implementation Spectrum: Human rights implementation can be categorized into three groups: Abolitionists, Reformers, and Status Quo Maintainers.
- Patient Concerns: Some patients express their concerns about being unprepared for the radical changes required by the UNCRPD to fully realize Article 12.
- Mad Community’s Stance: The Mad Community strongly opposes the internalized stigma and discrimination experienced by individuals with mental illness.
- Debate Around Article 12: The primary debate surrounding Article 12 revolves around diverse and sometimes conflicting perspectives around patient and worker safety.
- True Liberation: Genuine liberation entails empowering individuals to make decisions and take responsibility, including the implementation of strategies aimed at preventing patient restraints.
Questions to Consider
Additional Resources
Books and Book Chapters
Brown, L., & Neumeier, S. (2021). In the pursuit of justice: Advocacy by and for hyper-marginalized people with psychosocial disabilities through the law and beyond. In M. Stein, F. Mahomed, V. Patel, & C. Sunkel (Eds.), Mental Health, Legal Capacity, and Human Rights (pp. 332-348). Cambridge: Cambridge University Press. https://doi.org/10.1017/9781108979016.025
Bruce, L.M.J. (2021). How to go mad without losing your mind: Madness and black radical creativity. Duke University Press.
Journal Articles
Sapouna, L., & O’Donnell, A. (2017). ‘Madness’ and activism in Ireland and Scotland, a dialogue. Community Development Journal, 52(3), 524–534. https://doi.org/10.1093/cdj/bsx031
Online Resources & Websites
Council of Europe Commissioner for Human Rights. (2012, April). Who gets to decide? Right to legal capacity for persons with intellectual and psychosocial disabilities. Council of Europe. https://rm.coe.int/who-gets-to-decide-right-to-legal-capacity-for-persons-with-intellectu/16807bb0f9
Equality and Human Rights Commission. (2018, April 30). Equality and Human Rights Commission Response Adults with Incapacity Act (Scotland) 2000 Proposals for Reform. https://www.equalityhumanrights.com/sites/default/files/reform_of_awi_-_final_30_april_2018.pdf
Mind our Rights Education Programme. (n.d.). Home. https://morep.rehpatientscouncil.org.uk/
O’Hara, M. (2016, January 27). ‘My biggest act of rebellion as a disabled person is living as I wish’. The Guardian. https://www.theguardian.com/society/2016/jan/27/biggest-act-rebellion-disabled-person-being-hereREH Patients Council. (n.d.). About us. https://rehpatientscouncil.org.uk/about-us/
RightToLifeUK. (2023, April 11). Disability rights activists raise concerns about commons assisted suicide committee. https://righttolife.org.uk/news/disability-rights-activists-raise-concerns-about-commons-assisted-suicide-committee
Scottish Government. (2023, June 28). Scottish mental health law review: Our response. https://www.gov.scot/publications/scottish-mental-health-law-review-response/pages/11/
Stavert, J. (2021). Supported decision making: Good practice guide. Mental Health Commission of Scotland. https://www.mwcscot.org.uk/sites/default/files/2021-02/Supported%20Decision%20Making%202021.pdf
Videos, Webinars, Presentations
Mental Health Europe. (2016, June 20). UNCRPD: What is article 12 and legal capacity? [Video]. YouTube. https://www.youtube.com/watch?v=J3PVqTYI05s
