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

17/04/202417/04/2024

‘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 in dialogue with Professor Delia Ferri and Lucy Glover, Executive Producer at Stopgap Dance Company

Alt Text: 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.

05/04/202409/04/2024

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:

29/03/202410/04/2024

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.

02/10/202328/11/2023

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.

09/06/202328/11/2023

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.

26/04/202310/10/2023

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.

19/04/202310/10/2023

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.

10/03/202310/10/2023

‘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.

22/09/202217/10/2022

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.

10/05/202217/10/2022

Will you be RADICAL?

A call to Action for Revision of the Disability Act 2005

Social Structures

Authors: Mac MacLachlan, Delia Ferri, Delma Byrne and Anastasia Campbell – Assisting Living and Learning (ALL) Institute, Maynooth University

Black Background. White font large letters ‘Have your Say’ underneath subheading ‘Be RADICAL’ underneath text reads ‘Revision of the Act on Disability in Ireland through Collaborative Action for new Legislation’, the R, A, D, I, C, A, and L are bolded and underlined. — Be RADICAL: *Revision of the Act on Disability in Ireland through Collaborative Action for new Legislation*

By asking you to be RADICAL we are asking you to join us in calling for the Revision of the Act on Disability in Ireland through Collaborative Action for new Legislation.

We want to harness both new thinking and dissatisfaction concerning the Disability Act (2005), by constructively focusing on ideas for why and how the Act should and could be improved, now!

Our aim is to encourage legislators, and particularly the Minister for Disability, Anne Rabbitte, to begin the long-overdue process of legislative reform in disability. This year revision of the Education for Persons with Special Educational Needs, (EPSEN) Act (2004), was announced. Revision of EPSEN, without revision of its ‘sister Act’, the Disability Act (2005), with which it is closely intertwined, makes little sense. Furthermore, both of these acts predate the United Nations Convention on the Rights of Persons with Disability (CRPD) which, since our ratification in 2018 (we were the last country in Europe to ratify it), means that we are now obliged to comply with and deliver on the Convention.

22/04/202217/10/2022

“Human rights crisis within a crisis” – Intersectional challenges for persons with disabilities in the war in Ukraine

Social Structures

Author: Rebecca Daniel – PHD Student, Assisting Living and Learning (ALL) Institute, Department of Psychology, Maynooth University

The situation of persons with disabilities during the current war in Ukraine has been repeatedly described as a “crisis within a crisis” during the past number of months. This blog post aims to reflect on the multiple forms of discrimination that persons with disabilities face in times of conflict.

Approximately 15% of the worldwide population has a disability. The United Nations Office for the Coordination of Humanitarian Affairs (OCHA) estimated that 13% of people in Ukraine, in need of humanitarian assistance in 2021, had a disability. In situations of war and conflict, these numbers can even increase, since many disabilities are caused or worsened by war (e.g. through war injuries, a lack of health care provisions, or post-traumatic stress disorders). Given this, it can be estimated that the numbers of persons with disabilities directly or indirectly affected by the war in Ukraine are even higher than those estimated above.

22/03/202217/10/2022

Judicial Review of Assessment of Need

Social Structures

Author: Mac MacLachlan, Co-Director of the Assisting Living and Learning (ALL) Institute, Professor of Psychology & Social Inclusion, Maynooth University and Clinical Lead for Disability Services, Irish Health Service (HSE)

Mac MacLachlan

On the 11^th March 2022, Justice Siobhan Phelan’s Judicial Review , was released which sought to address the grievances in two particular cases, and to interpret the intensions of the Disability Act (2005) regarding the Assessment of Need (AoN) process. I can make no comment on the particular cases, but I would rather comment on the broader issues touched upon in the decision and on Justice Phelan’s interpretation of the AoN process, while well intentioned and carefully considered, seems to me very problematic. While she refers to a related 2019 report from the ALL Institute on a closely related topic, the judgement will not help us address the challenges, which are certainly not unique to the Irish context.

The Standard Operating Procedure (SOP) for the AoN was introduced to have a standardised and shorter assessment time, allowing for services that assist children and parents to be provided more quickly. It allowed for assessment continuing as part of routine clinical practice alongside services such as therapy, recognising that assessment is not a one-off event, and that people’s needs change over time. The SOP also allowed for the situation where, should a preliminary assessment not be sufficient to identify the need for services, then a more detailed assessment would follow. This is a pragmatic approach, to maximise the impact of available resources, as the Health Service Executive (HSE) is compelled to do under section 7 of the Health Act (2004): resources should be used in the “most beneficial, effective and efficient manner”.

24/02/202217/10/2022

The Tragic Age: Life without a PA

Stories/Lived Experiences

Author: Ross Coleman is a Translator, Writer and Disability Rights Activist from Dublin

Ross Coleman

“Ours is essentially a tragic age, so we refuse to take it tragically”, thus opens D.H Lawrence’s famous novel Lady Chatterley’s Lover, published in 1928 in which a bored unfulfilled housewife embarks on an affair with the gardener on her husband’s estate. Clifford Chatterley, Lawrence informs us, is a cripple, badly injured from serving in the front. Since his injury, he has become cold and unfeeling, absorbed in books and his intellect, only going outside to toot along in his electric bathchair. When I first read the book a few years ago, I dismissed it as a bygone relic of an ableist age. And yet, despite that, I was forced to admit a single harrowing fact: nothing has really changed.

I require a Personal Assistant (hereafter referred to as a PA) in order to help with daily tasks that I cannot do myself: getting dressed, going to the bathroom, showering. At the moment, my parents provide this support and have been providing it since I was born. If I want to go out, I either have to go out with my parents or just not go to the bathroom. Neither of these are desirable solutions. I should not expect, neither do I want, my parents to accompany me to every social function, but nor can I just not go to the bathroom.

20/12/202117/10/2022

Supported Decision Making and Next of Kin: The DSS Perspective and new perspectives for innovative participatory research

Social Lives

Author: Hannah Casey, Assisting Living & Learning( ALL) Institute Blog editor and PhD Candidate, Decision Support Service

Hannah Casey

Supported Decision Making is a method that may be employed by persons who require help to make decisions in their day-to-day lives. These decisions may range from, where to go on holiday, to, how to manage financial concerns. Supported Decision Making is gaining traction and importance across the globe, and particularly in an Irish context in anticipation of the Assisted Decision Making (Capacity) Act 2015, set to be commenced in full by mid-2022. This has the added effect of ensuring Ireland may fully honour Article 12 of the United Nations Convention on the Rights of Persons with Disabilities, which states that persons with disabilities have the right to make their own decisions, and enjoy the same legal capacity that people without disabilities have in their lives. The Decision Support Service (DSS) has been established to support persons to exercise their right to make decisions, with the key understanding that a person’s capacity to make decisions should be assessed by reference to the decision in question.

03/12/202117/10/2022

Participation matters – Global Survey on involvement of persons with disabilities in public decision-making

Social Structures

Symposium

Click here for Audio Version

Author: Rebecca Daniel – PHD Student, Assisting Living and Learning (ALL) Institute, Department of Psychology, Maynooth University

The IDA Global Survey on political participation of Organisations of Persons with Disabilities (OPDs) was launched earlier this year and will remain open until the end of 2021. It is conducted as part of a PhD research project undertaken at the ALL Institute and discussed below on the occasion of the International Day of Persons with Disabilities.

The human right to participation of persons with disabilities through their representative organisations is clearly stated in the UN Convention on the Rights of Persons with Disabilities (UNCRPD). Articles 4.3 (on participation of OPDs in implementation of the UNCRPD overall) and 33.3 (on participation of OPDs in national implementation and monitoring of the UNCRPD), as well as General Comment No 7 specify this right. As far as the United Nations (UN) are concerned, participation of OPDs is a crucial principle to be considered throughout the activities of the UN, in line with indicator 5 of the United Nations Disability Inclusion Strategy (UNDIS) on consultation of persons with disabilities.

However, as one of the most marginalised groups (compare e.g. WHO World Report on Disability, WHO – Disability and Health and United Nations Office for Disaster Risk Reduction), persons with disabilities are in many ways excluded from public decision-making. Their full and effective participation in all decisions concerning their lives is yet to be realised (compare e.g. Bridging the Gap: The unsteady path, IDA: Increasingly Consulted but Not Yet Participating). Public programmes, policies, plans and projects, insofar as they consider participation, are all too often addressing members of civil society as beneficiaries or consumers of services instead of citizens (Andrea Cornwall).

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