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Global perspectives on legal capacity reform : our voices, our stories / edited by Eilionoir Flynn, Anna Arstein-Kerslake, Cliona de Bhailis, and Maria Laura Serra.

By: Flynn, Eilionoir [editor].
Contributor(s): Arstein-Kerslake, Anna [editor.] | Bhailis, Cliona de [editor.] | Serra, Maria Laura [editor.] | Arstein-Kerslake, Anna | Clarke, Nicholas | Munro, Nell | Hocking, Chloe | Dhanda, Amita | Gombos, Gabor | Rehema, Joy | O'Shea, Emer | Hendrick, Claire | McNamara, Donna | Lowndes, Dermot | Strnad, Jan | Rochford-Brennan, Helen | Jenkins, Moira | Petrova, Marieta | Yumerova, Aylin | Alford, Paul | Browning, Michelle | Serra, Maria Laura | Mahony, Maria | Richardson, Sarah | Harris, Ronnie | Offergeld, Jana | Roper, Cath | Gooding, Piers | Seshasayee, Lavanya | Jesperson, Maths | Anderson, Fiona | Chen, Bo | Valliappan, Reshma | Mykitiuk, Roxanne | Staney, Rusi | Wildeman, Sheila.
Series: Routledge research in human rights law.Publisher: Abingdon ; New York, NY : Routledge, 2019Copyright date: 2019Description: xxiii, 218 pages ; 25 cm.Content type: text Media type: unmediated Carrier type: volumeISBN: 9781138298910.Subject(s): Convention on the Rights of Persons with Disabilities and Optional Protocol (2007 March 30) | Convention on the Rights of Persons with Disabilities and Optional Protocol (2007 March 30) | DISABILITY | INTELLECTUAL CAPACITY | LEGAL RIGHTS | INFORMED CONSENT | LAW REFORM | MENTAL HEALTH LAWS
Contents:
Theoretical framework / Cliona de Bhailis -- Project methodology & background / Eilionoir Flynn.
Introduction to criminal responsibility / Anna Arstein-Kerslake -- Going to pot : Nick's journey through the criminal justice system / Nicholas Clarke, Chloe Hocking, and Nell Munro -- Questions of criminal culpability and persons with disabilities / Amita Dhanda and Gabor Gombos -- Conclusion : criminal responsibility / Anna Arstein-Kerslake -- Introduction to contractual capacity / Cliona de Bhailis -- I have the strength to speak up for myself : Nikona nguvu ya kujiongelelea / Joy Rehema and Emer O'Shea -- Silenced, alone, powerless : my life as a ward of court in Ireland / Claire Hendrick and Donna MC Namara -- "The law is very complicated" / Dermot Lowndes and Jan Strnad -- Travel and dementia : one story, many rights / Helen Rochford Brennan and Moira Jenkins -- Consumer law, contracts & support : I had one dream to buy a simple smartphone / Marieta Petrova and Aylin Yumerova -- From institutional life to home ownership : a personal story demonstrating the power of support to enable the exercise of legal capacity / Paul Alford and Michelle Browning -- Conclusion : contractual capacity / Cliona de Bhailis -- Introduction to relationships and consent to sex / Maria Laura Serra -- Marriage and intellectual disability in Ireland : my sister is married, why can't I get married? / Maria Mahony and Sarah Richardson -- Dreaming of traveling, dreaming of freedom : relationships and the right to support / Ronnie Harris and Jana Offergeld -- Conclusion : relationships and consent to sex / Maria Laura Serra -- Introduction to consent to medical treatment / Eilionoir Flynn -- This is not a story : from ethical loneliness to respect for diverse ways of knowing, thinking, and being / Cath Roper and Piers Gooding -- Getting sucked out of that black hole termed India's legal mental health machinery / Lavanya Seshayee and Maths Jesperson -- Consent is more than just yes or no / Fiona Anderson and Bo Chen -- The humour in my tumour : respecting legal capacity in health care decision making / Reshma Vallippan and Roxanne Mykitiuk -- Conclusion : consent to medical treatment / Eilionoir Flynn -- Freedom : a work in progress / Rusi Stanev and Sheila Wildeman -- Overall conclusion / Eilionoir Flynn.
Summary: Review. Do you struggle to bridge the gap between worthy principles of supported decision-making and their application in daily practice? Have you wondered how to give effect to the UN Convention for everyone you know and care about? A recently published book provides an important and powerful remedy. The collection of stories and commentaries come from a large international project called the Voices project, led from a group in Galway Ireland. VOICES project was created to respond to a gap in the literature and in law reform efforts concerning the right to legal capacity for persons with disabilities (related to Article 12 of the Convention). Fundamental to the Voices project was a commitment to make visible the lived experience of people with disabilities in both the exercise and in the denial of their rights to legal capacity. The book has used individuals' stories as told by people with disability to illustrate situations of almost universal application. So it is reflects the harsh and complex reality that many people with disabilities face. The book has a consistent structure that helps make it easier to read and digest. It is written in 4 parts, each addressing a different element of legal capacity. These are criminal responsibility (including the insanity defence), contractual capacity (inheritance, property, and everyday decision-making), relationships and consent to sex, and consent for medical treatment. Each part includes a powerful story, and some really illuminating discussion from knowledgeable "experts" (like human rights lawyers, or advocates) about what this means for countries who are signatories to the UN Convention on the Rights of Persons with Disabilities. At the conclusion of each section, an editor provides a helpful summary and includes challenges to the reader. The book is especially welcomed because it addresses challenging questions. 1. What counts as the exercising of legal agency from an individual? 2. What other justifiable limits on individual agency that a state can apply? 3. How can we ascertain whether a person is giving free and informed consent without engaging in functional assessments about the person's mental capacity? In my opinion this book should become essential reading for people who declare an interest in the wellbeing and rights of people with intellectual disability. The list of those who would value reading it includes anyone whose work involves them in policy design, in providing and auditing services, or in providing safeguards. It will be a helpful provocation for clinicians and professionals engaged in capacity assessment, advocates and legal professionals. There are 4 main benefits for readers of this book. 1. it expands our understanding of the complexities and challenges we need to face if we wish to make real our commitment to the UN Convention, especially Article 12. 2. it demonstrates a responsible way to gather and build from real life experiences of people with disabilities, by putting their story-telling at centre. In this way, discussions relating to legal concepts never stray too far from reality for those of us who are not legally trained. 3. it demonstrates in a really powerful way how to respectfully include people with disabilities in elements of our society that have so much effect on their lives. 4. it draws from stories across many countries (e.g. Ireland, Australia, India, Bulgaria). This makes possible to see what is universal despite widely different cultures and legislative systems. Of the 4 themes or related to legal capacity, the one on criminal responsibility was perhaps the most challenging. This section included discussion on subtle but important legal concepts, so it required careful reading by those of us outside the legal profession. Forthunately, the format of storytelling and responses largely overcomes this difficulty. Nick's story resonates powerfully because it sounds so familiar. It demonstrates how easily a person with cognitive impairment can find themselves drawn into the justice system, and how hard it is for them to get fair treatment and movement beyond that justice system. I was particularly struck by the distinction that was made between wrongful acts and wrongful intention, central to criminal responsibility arguments. Similarly, the criminal responsibility section also described ways in which reasonable accommodations could be made. This section also covered well what counts as a reasonable accommodation, and what I personally can change in my own behaviour to enhance a person's legal capacity through judicial systems. The stories also described how our legal systems to deal with criminal responsibility currently set different standards and expectations for disabled and nondisabled. I frequently read sections with New Zealand's legislative and policy frameworks in mind, and identified where we have real challenges to address here. The book describes alternatives. Part 2 dealt with contractual capacity. It demonstrated the every-day effect of perceived lack of capacity. The section also explored the difference between informal and formal supports, offering suggestions for ways to recognise blends of both, and for strengthening informal supports. It will prove interesting reading for families and advocates. The Part devoted to capacity regarding relationships and consent to sex was excellent. Maria and her colleagues talked about Irish legislation that appeared to prohibit her from getting married. The 2nd story from Ronnie talked about the constraints on him in having the type of relationship with his fiancée that he wished; namely that they could travel together. This seemed simple but Ronnie's story highlighted the powerful effect of informal constraints from others to do the everyday things that bind relationships together. Part 4 of the book deals with consent to medical treatment and focuses on mental health and forced treatment. The stories and commentary offer powerful arguments that challenge deeply ingrained and sanctioned biases about people who experience mental illness. More importantly though, it describes how to include people in decision-making about their health and well-being when their health and well-being is compromised. The book provides a format for ongoing debate and dialogue on topics which we must focus. It deserves to be highly read and to be used to inform more progressive action on supported decision-making and on how to make rights real for New Zealanders living with disability
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Includes bibliographical references and index.

Theoretical framework / Cliona de Bhailis -- Project methodology & background / Eilionoir Flynn.

Introduction to criminal responsibility / Anna Arstein-Kerslake -- Going to pot : Nick's journey through the criminal justice system / Nicholas Clarke, Chloe Hocking, and Nell Munro -- Questions of criminal culpability and persons with disabilities / Amita Dhanda and Gabor Gombos -- Conclusion : criminal responsibility / Anna Arstein-Kerslake -- Introduction to contractual capacity / Cliona de Bhailis -- I have the strength to speak up for myself : Nikona nguvu ya kujiongelelea / Joy Rehema and Emer O'Shea -- Silenced, alone, powerless : my life as a ward of court in Ireland / Claire Hendrick and Donna MC Namara -- "The law is very complicated" / Dermot Lowndes and Jan Strnad -- Travel and dementia : one story, many rights / Helen Rochford Brennan and Moira Jenkins -- Consumer law, contracts & support : I had one dream to buy a simple smartphone / Marieta Petrova and Aylin Yumerova -- From institutional life to home ownership : a personal story demonstrating the power of support to enable the exercise of legal capacity / Paul Alford and Michelle Browning -- Conclusion : contractual capacity / Cliona de Bhailis -- Introduction to relationships and consent to sex / Maria Laura Serra -- Marriage and intellectual disability in Ireland : my sister is married, why can't I get married? / Maria Mahony and Sarah Richardson -- Dreaming of traveling, dreaming of freedom : relationships and the right to support / Ronnie Harris and Jana Offergeld -- Conclusion : relationships and consent to sex / Maria Laura Serra -- Introduction to consent to medical treatment / Eilionoir Flynn -- This is not a story : from ethical loneliness to respect for diverse ways of knowing, thinking, and being / Cath Roper and Piers Gooding -- Getting sucked out of that black hole termed India's legal mental health machinery / Lavanya Seshayee and Maths Jesperson -- Consent is more than just yes or no / Fiona Anderson and Bo Chen -- The humour in my tumour : respecting legal capacity in health care decision making / Reshma Vallippan and Roxanne Mykitiuk -- Conclusion : consent to medical treatment / Eilionoir Flynn -- Freedom : a work in progress / Rusi Stanev and Sheila Wildeman -- Overall conclusion / Eilionoir Flynn.

Review. Do you struggle to bridge the gap between worthy principles of supported decision-making and their application in daily practice? Have you wondered how to give effect to the UN Convention for everyone you know and care about? A recently published book provides an important and powerful remedy. The collection of stories and commentaries come from a large international project called the Voices project, led from a group in Galway Ireland. VOICES project was created to respond to a gap in the literature and in law reform efforts concerning the right to legal capacity for persons with disabilities (related to Article 12 of the Convention). Fundamental to the Voices project was a commitment to make visible the lived experience of people with disabilities in both the exercise and in the denial of their rights to legal capacity. The book has used individuals' stories as told by people with disability to illustrate situations of almost universal application. So it is reflects the harsh and complex reality that many people with disabilities face. The book has a consistent structure that helps make it easier to read and digest. It is written in 4 parts, each addressing a different element of legal capacity. These are criminal responsibility (including the insanity defence), contractual capacity (inheritance, property, and everyday decision-making), relationships and consent to sex, and consent for medical treatment. Each part includes a powerful story, and some really illuminating discussion from knowledgeable "experts" (like human rights lawyers, or advocates) about what this means for countries who are signatories to the UN Convention on the Rights of Persons with Disabilities. At the conclusion of each section, an editor provides a helpful summary and includes challenges to the reader. The book is especially welcomed because it addresses challenging questions. 1. What counts as the exercising of legal agency from an individual? 2. What other justifiable limits on individual agency that a state can apply? 3. How can we ascertain whether a person is giving free and informed consent without engaging in functional assessments about the person's mental capacity? In my opinion this book should become essential reading for people who declare an interest in the wellbeing and rights of people with intellectual disability. The list of those who would value reading it includes anyone whose work involves them in policy design, in providing and auditing services, or in providing safeguards. It will be a helpful provocation for clinicians and professionals engaged in capacity assessment, advocates and legal professionals. There are 4 main benefits for readers of this book. 1. it expands our understanding of the complexities and challenges we need to face if we wish to make real our commitment to the UN Convention, especially Article 12. 2. it demonstrates a responsible way to gather and build from real life experiences of people with disabilities, by putting their story-telling at centre. In this way, discussions relating to legal concepts never stray too far from reality for those of us who are not legally trained. 3. it demonstrates in a really powerful way how to respectfully include people with disabilities in elements of our society that have so much effect on their lives. 4. it draws from stories across many countries (e.g. Ireland, Australia, India, Bulgaria). This makes possible to see what is universal despite widely different cultures and legislative systems. Of the 4 themes or related to legal capacity, the one on criminal responsibility was perhaps the most challenging. This section included discussion on subtle but important legal concepts, so it required careful reading by those of us outside the legal profession. Forthunately, the format of storytelling and responses largely overcomes this difficulty. Nick's story resonates powerfully because it sounds so familiar. It demonstrates how easily a person with cognitive impairment can find themselves drawn into the justice system, and how hard it is for them to get fair treatment and movement beyond that justice system. I was particularly struck by the distinction that was made between wrongful acts and wrongful intention, central to criminal responsibility arguments. Similarly, the criminal responsibility section also described ways in which reasonable accommodations could be made. This section also covered well what counts as a reasonable accommodation, and what I personally can change in my own behaviour to enhance a person's legal capacity through judicial systems. The stories also described how our legal systems to deal with criminal responsibility currently set different standards and expectations for disabled and nondisabled. I frequently read sections with New Zealand's legislative and policy frameworks in mind, and identified where we have real challenges to address here. The book describes alternatives. Part 2 dealt with contractual capacity. It demonstrated the every-day effect of perceived lack of capacity. The section also explored the difference between informal and formal supports, offering suggestions for ways to recognise blends of both, and for strengthening informal supports. It will prove interesting reading for families and advocates. The Part devoted to capacity regarding relationships and consent to sex was excellent. Maria and her colleagues talked about Irish legislation that appeared to prohibit her from getting married. The 2nd story from Ronnie talked about the constraints on him in having the type of relationship with his fiancée that he wished; namely that they could travel together. This seemed simple but Ronnie's story highlighted the powerful effect of informal constraints from others to do the everyday things that bind relationships together. Part 4 of the book deals with consent to medical treatment and focuses on mental health and forced treatment. The stories and commentary offer powerful arguments that challenge deeply ingrained and sanctioned biases about people who experience mental illness. More importantly though, it describes how to include people in decision-making about their health and well-being when their health and well-being is compromised. The book provides a format for ongoing debate and dialogue on topics which we must focus. It deserves to be highly read and to be used to inform more progressive action on supported decision-making and on how to make rights real for New Zealanders living with disability

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