UN Convention on the Rights of Persons with Disabilities (CRPD).

‘Lived Fiction’ Goes on Stage: Reflecting on a Major Milestone for the DANCING Project and the Collaboration with Stopgap

Research Stream: Stories / Lived Experiences

Author: Eva Krolla Research Assistant DANCING, in dialogue with Professor Delia Ferri and Lucy Glover, Executive Producer at Stopgap Dance Company

Image on the left shows Eva Krolla smiling and wearing white, image in the centre shows Professor Delia Ferri smiling and wearing black, image on the right shows Lucy Glover smiling and wearing navy.

On 11^th April, the contemporary dance piece ‘Lived Fiction’ premiered at Dublin’s Lir Academy Theatre in collaboration with Project Arts Centre (PAC). The piece was commissioned by DANCING, a European Research Council (ERC) funded academic research project based at the School of Law and Criminology of Maynooth University. It was created by Stopgap Dance Company’s Deaf, Disabled, neurodivergent and non-disabled creatives under the lead of co-artistic director Lucy Bennett. Stopgap are a global leader of disability access in dance and are based in the UK. ‘Lived Fiction’ artistically embeds accessibility for dancers and audiences through an integrated creative access approach.

The ERC funded PatentsInHumans Project – Year One Project Report And Reflections!

Research Stream: Social Technologies

Authors: Professor Aisling McMahon, Principal Investigator (ERC PatentsInHumans Project) & Sinéad Masterson, Project Manager (ERC PatentsInHumans Project)

It is hard to believe that the PatentsInHumans Project has passed the one-year point having commenced in November 2022! And what a quick and busy year it was! Alongside recently publishing our Year 1 Report which gave us pause to reflect on the project, we were delighted to write this article for the IDEAS in ALL Blog to mark the first year of the project and to provide a snapshot of the research and other activities the PatentsInHumans team have undertaken during this time.

The PatentsInHumans Project:

What Role is There for Artificial Intelligence in the Assessment of Neurodiversity?

Research Stream: Social Technologies

Author: Emily McConway, Undergraduate Intern in Psychology, Maynooth University and Mac MacLachlan, Professor of Psychology & Social Inclusion, and Co-Director of the ALL Institute, Maynooth University

Early assessment and intervention are vital in facilitating positive developmental and behavioural outcomes for children with neurodevelopmental conditions. Early intervention has a positive long-term effect on both autistic children and their caregivers. The current process of assessing the needs of children with possible autistic traits focuses on the use of behavioural clinical diagnostic instruments such as Autism Diagnostic Observation Schedule (ADOS) and Autism Diagnostic Interview-Revised (ADI-R). Both instruments require direct clinician-to-child observation and can take hours to administer and score. In many countries, long waiting lists, coupled with social, economic and geographic barriers hinders timely assessment of neurodiverse children. The ALL Institute is interested in pragmatic ways to streamline access to services, including assessing a person’s needs for services and supports.

The DANCING Mid-Term Academic Conference: Taking Stock of the First Three Years and Reflecting on the Challenges of Interdisciplinarity

Social Lives

Author: Eva Krolla, Research Assistant in the ERC-funded DANCING Project at the School of Law and Criminology and Assisting Living and Learning (ALL) Institute, Maynooth University

*DANCING Mid-Term Academic Conference speakers*

The European Research Council (ERC) funded research project ‘Protecting the Right to Culture of Persons with Disabilities and Enhancing Cultural Diversity in EU Law: Exploring New Paths – DANCING’ based at the ALL Institute and the School of Law and Criminology under the lead of Principal Investigator Prof. Delia Ferri marked its halfway point by hosting the DANCING Mid-Term Academic Conference on Monday, 4 September 2023 at Maynooth University.

From the Centre Back to the Margins: Invisibility of Persons with Disabilities in the Draft Convention on the Right to Development

Social Structures

Author: Harry Chikasamba, PhD Researcher, Assistive Living and Learning (ALL) Institute, School of Law and Criminology, Maynooth University

Harry Chikasamba

Until 2006, persons with disabilities were invisible in core legally binding human rights instruments, including the International Covenant on Civil and Political Rights (ICCPR) and the International Covenant on Economic, Social and Cultural Rights (ICESCR). Unsurprisingly, this was the case because persons with disabilities were being considered as having a lower social status, being dependent and inferior in society. In the early and mid-2000s, persons with disabilities convened as self-advocates in the historical halls of the United Nations (UN) in New York where they exhibited an unwavering spirit of resilience and genuine pursuit of equality which shaped and brought to life the first ever legally binding international human rights treaty in the 21^st century: the Convention on the Rights of Persons with Disabilities (CRPD). In principle, the CRPD protects and promotes the rights and dignity of persons with disabilities, ensuring their full and equal participation in society.

Sadly, the draft Convention on the Right to Development, currently undergoing negotiations at the UN, risks undermining the feeble progress painstakingly made over the past 15 years since the CRPD came into force in 2008. Among other gains, the CRPD has served as the major global catalyst towards viewing persons with disabilities as equal members of society, positioning disability as both a matter of human rights and of development which is evident in the inclusion of disability issues in the 2030 Agenda for Sustainable Development. Worth noting, disability and persons with disabilities are referred to 11 times in the 17 Sustainable Development Goals (SDGs) that make up the 2030 Agenda. Dishearteningly, the invisibility of persons with disabilities in the draft Convention means that, at this juncture, any prospects of advancing disability-inclusive development remain bleak and devoid of hope.

An Environmental Scan of the Web in Anticipation of the Capacity Act

Social Structures

Author: Hannah Casey, ALL Blog Editor and PhD Candidate at the Department of Psychology, Maynooth University

Hannah Casey

At long last, the highly anticipated Assisted Decision-Making (Capacity) Act 2015 has been fully commenced in Irish law today, April 26^th. This Act, which replaces the outdated Lunacy Act of 1871, aims to align with Article 12 of the United Nations Convention for the Rights of Persons with Disabilities (UNCRPD) by enshrining in statute the right for people with disabilities to make their own decisions, and removing formal guardianship arrangements. As part of this new structure, the Decision Support Service (DSS) will finally be able to open its doors and provide much needed services, supports, and resources to people who need it. This service will allow people with disabilities to access necessary supports to make their own decisions, with as much help as they themselves deem necessary. Such decision-making is referred to as supported or assisted decision-making– a formal method of support that has fast been gaining traction across the world.

Maynooth Alumnus and Disability Activist Selected to Represent Disabled People in the European Parliament

Stories/Lived Experience

Author: James Cawley, Business Development Executive at the Irish Centre for Diversity, Disability Rights Activist, and Member of the Irish Human Rights and Equality Commission Disability Advisory Committee

James Cawley

James Cawley is a disabled activist from County Longford and an alumnus of Maynooth University who is currently working as a Business Development Executive at the Irish Centre for Diversity. He is also a member of the Irish Human Rights and Equality Commission (IHREC) Disability Advisory Committee (DAC) and has worked in numerous capacities and functions in the areas of education and disability rights advocacy. He has represented persons with disabilities in public and governmental fora, having recently served on the Irish Government’s Disability Stakeholder Group (DSG 6) in 2022 after his appointment to the group by the incumbent Minister of State for Disability, Anne Rabbitte.

The function of the DSG 6 is to play an important role in the ‘monitoring of the government’s disability policies and strategies’ and it comprises a membership representative of a diverse group of people from the disabled community.

‘Lived Fiction’ – First sharing of Inclusive Contemporary Dance Choreography within the DANCING Project

Social Lives

Authors: Ann Leahy, Post-doctoral Researcher, and Delia Ferri, Professor of Law, ERC Project DANCING, Assisting Living and Learning (ALL) Institute, School of Law and Criminology, Maynooth University

DANCING: Researching Disability and Diversity in Culture

The Project “Protecting the Right to Culture of Persons with Disabilities and Enhancing Cultural Diversity through European Union Law: Exploring New Paths (DANCING)”, based at the ALL Institute, reached an important milestone at the end of February 2023. The initial work on an inclusive and accessible piece of contemporary dance created by Lucy Bennett and Stopgap Dance Company for DANCING was performed in Dublin in front of an invited audience. The work will be fully ready next year, and we are already looking forward to the world premiere in Dublin in early 2024.

The image shows Stopgap Dance company during the choreography. The image shows dancers from different ethnical backgrounds some of whom on a wheelchair.

On 24^th February 2023, Stopgap shared their work-in-progress in a pre-staging fashion, and without costumes or lighting at DanceHouse in a dedicated event organised in collaboration with Dance Ireland. ‘Lived Fiction’ – the title of the work being created by Lucy Bennett and collaborators from Stopgap – is an original piece of choreography that is performed by a group of disabled and non-disabled dancers and endeavours to be accessible to all. Stopgap’s devising process is based on key inclusive methods that the company has collectively developed and is a living example of how society should and could be, valuing the richness that comes from diversity. Experimenting and working on accessibility for both dancers and audience allows for a deep understanding of what accessibility really means. However, this choreographic work is also meant to be a “tool for change” by raising awareness on inclusive cultural participation.

September 7th, the Publication of the ‘European Care Strategy’: A Brief Appraisal of the European Commission’s Strategic Policy Document

Social Structures

Author: Matthew McKenna, PhD Researcher at Maynooth University’s Assisting Living and Learning Institute (ALL), Research Funded through the Science Foundation of Ireland (SFI) Centre for Research Training in Advanced Networks for Sustainable Societies (ADVANCE CRT)

Matthew McKenna

The highly anticipated publication of the European Commission’s (EC) ‘European Care Strategy’ (ECS/strategy) on the 7^th of September 2022 has been met with cautious optimism and circumspection. Certainly, there is a unanimous agreement that the arrival of this strategy is a welcome policy development. However, last week’s unveiling of the ECS also underlined how long overdue this development has been, and it represents an initial and elemental step in addressing the long-term systemic deficiencies in the European Union’s (EU) approach to the care of its citizens. If one is to view this radical collective change as a physical journey, then the ECS is arguably representative of a social and legal point of embarkation from a policy sense, and it is certainly not a final destination.

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