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 11th 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.
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.
Author: Gizem Yardimci, Early Career Researcher at ADVANCE CRT, PhD Student in Law, Maynooth University
Gizem Yardimci
The Draft Artificial Intelligence Act (Draft AI Act) for the European Union (EU) represents a significant milestone towards the regulation of technologies employing AI within the EU. Since the zero version of the Draft AI Act was released on 21 April 2021, it has been discussed extensively by academics, policymakers and professionals who are involved in the decision-making processes within the EU. In May of this year, the European Parliament released a Draft Compromise Text with significant amendments on the Draft AI Act. Therefore, the European Parliament is in a position to launch ‘trialogues’ with the European Commission and the Council of the European Union. Overall, this development represents a formal step towards finalising the regulation for AI systems in the EU.
The main goal of the Draft AI Act is to improve the functioning of the internal market and to advance the creation of a digital single market as indicated in the Digital Single Market Strategy.
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 26th. 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.
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
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
On 24th 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.
Authors: GoGreenRoutes Academy Cluster Members – Maria Fernandez de Osso Fuentes, PhD Researcher in the School of Business; Maynooth University, Cassandra Murphy, PhD Researcher in the Psychology Department of Maynooth University, Assisting Living and Learning Institute (ALL); and Alan Scarry, PhD Researcher in the Department of Biological Sciences, University of Limerick. All authors are funded by the H2020 project GoGreenRoutes.
The GoGreenRoutes Academy
Conference on Near Nature: Green Space and Environmental Justice
Maynooth University, and ALL Institute project GoGreenRoutes (GGR) has a unique component referred to as an ‘Academy Cluster.’ Scientific Coordinator Professor Tadhg Macintyre established the academy at the start of the GGR project, and it has thrived over the past three years. Currently, Cassie Murphy, Maria Fernandez de Osso Fuentes, and Alan Scarry, all PhD Researchers within the project, oversee the GGR academy. The Academy is a meeting forum for PhD Researchers and other Early Career Researchers to discuss progress and gaps in their individual learning. It was developed to give the researchers an opportunity to acquire new knowledge and develop new abilities from a range of outstanding speakers in a variety of sectors. The researchers themselves then took on the role of teachers, imparting their knowledge to any incoming academy members. Since the academy’s inception, each member has been given two distinct skill profiles: one for skills they seek to learn, the other for skills they wish to teach. Then, at this forum, each academy member has the chance to speak and acquire new abilities. Based on a method implemented by Professor John Gallagher, who works on the GGR project, researchers are urged to evaluate their own development. By assessing their own skills and identifying knowledge or education gaps that can be filled for professional advancement and personal growth, the researchers are also able to monitor the progress of their own research projects through participation in academy activities.
Author: Matthew McKenna, PhD Researcher at Maynooth University’s Assisting Living and Learning Institute (ALL Institute), Research Funded through the Science Foundation of Ireland (SFI) Centre for Research Training in Advanced Networks for Sustainable Societies (ADVANCE CRT)
Matthew McKenna
The 24th of January 2023 was the UN International Day of Education, whilst today, the 24th of February, represents the first anniversary of the start of the full-scale Russian invasion of Ukraine that began a year ago as of this morning. This blogpost will address the unfathomable human rights crisis and tragedy that has befallen the Ukrainian people and the subsequent denial of access to education in wartime.
“Establishing lasting peace is the work of education; all politics can do is keep us out of war” – Dr Maria Montessori.
Montessori, was an Italian medical doctor who pioneered the philosophy of education through her work with children with disabilities, starting in 1896. She delivered the above quote in the late 1930s while working on the ‘Education for Peace’ movement during her exile from Italy due to the anti-fascist ethos of her humanitarian work. Montessori believed that a lasting unity between nations and peoples could be achieved when the education of children was underpinned with the values of international peace and humanitarianism. Moreover, her work has had a profound impact on the gradual educational reforms that have slowly enabled persons with disabilities to enter education and has helped, albeit over time, to reduce the traditionally punitive and penal institutional approach to children experiencing learning difficulties. And as we marked the UN International Day of Education a month ago on 24th January 2023, her words sound just as relevant in today’s context as they were in the agitated pre-war climate of the late 1930s.
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 7th 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.
Author: Rebecca Daniel – PHD Student, Assisting Living and Learning (ALL) Institute, Department of Psychology, Maynooth University
Rebecca Daniel
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.
Author: Péter Mezei, Associate Professor of Law, University of Szeged, Faculty of Law and Political Sciences; adjunct professor (dosentti), University of Turku, Faculty of Law
Péter Mezei
Most of the European Union (EU) legislation on platforms was introduced in a period that we currently call “web 1.0”. During the early years of the internet, websites offered “read only” experience, rather than interactivity and user engagement. The early legislative acts in the USA and the EU have contributed to the emergence of brand-new business models. The platformisation – based on the safe harbours granted for (certain) service providers – has generated a brand new (“read/write”) internet culture, something we refer to as “web 2.0”. For a while, social media’s contribution to modern society was hailed as the new democratisation of life, but those sentiments have since then gone, partially due to platforms’ excessive content moderation practices.
Web 2.0 – coupled with rogue websites’ contribution to illegal end-user activities – have sparked criticism on a global scale. It took many years in Europe to come up with the necessary solutions to mitigate the negative consequences of the platform age. One of the magic keywords for these reforms was the so-called “value gap”, that is, the claim that platforms’ benefits from end-users’ activities is disproportionately greater than the fees they pay to rights holders. Furthermore, as data has become the “oil of our age”, an urgent need has arisen to regulate the collection, management and utility of information.
Author: Matthew McKenna, PhD Researcher at Maynooth University’s Assisting Living and Learning (ALL) Institute, Research Funded through the Science Foundation of Ireland (SFI) Centre for Research Training in Advanced Networks for Sustainable Societies (ADVANCE CRT)
Matthew McKenna
The Council of Europe (2020) recalls that the word ‘Democracy’ ‘comes from the Greek words “demos“, meaning people, and “kratos“, meaning power; so democracy can be thought of as “power of the people”: a way of governing which depends upon the will of the people’.
Theories and models of democracy and ‘popular governance’ have manifested in innumerate social models and national socio-political dispositions of rule over millennia since the beginnings of ‘Athenian Democracy’ in the 5th Century BCE. The Greek Directorate of International Relations and European Union of the Hellenic Ministry of Culture and Sports (2020) provides the following synopsis of the origins of democratic rule that is cherished as part of the underpinning ethos of the favoured model of governance by the modern political establishment within the context of the socio-political order of the European Union (EU) of today: ‘Humans as autonomous entities in the context of organized society, the respect for their personality, freedoms and rights, were fundamental topics in the ancient Greek thought. From the Elegies of Solon (c. 630-560 BC) to the Democracy and Laws of Plato (428/7-348/7), the Politics of Aristotle (384-323/2 BC) and Demosthenes’ fiery speeches (384-323 / 2 BC), the ideas of justice, rule of law, decency, education, virtue and free thought stand out as key ingredients for the ideal regime’.
‘The mainstreaming of the rights of older persons with disabilities into all disability and ageing-related policies and programmes is key to ensure that the concerns and needs of older persons with disabilities are adequately addressed’.
However, older persons with disabilities face an intersectional form of discrimination within the European Union (EU), which derives from the intersection of ‘ableism’ and ‘ageism’. People within the EU are now living longer than ever before, with 101.1 million people aged 65 or over residing within the EU-27 in early 2018. Close to half of all persons over the age of 65 in the EU have some form of disability. Incidences of disability in old age, especially acquired disability, increase substantially amongst individuals in older age categories and, as a result, older persons with disabilities are at increased risk of neglect, loss of supports, abuse and poverty, amongst other risks.
Author: Evelyn Soye, Research Assistant with the SHAPES Project (Department of Law and ALL Institute at Maynooth University)
SHAPES: Smart and Healthy Ageing through People Engaging in supportive Systems Logo.
According to European Commission’s Report on the Impact of Demographic Change, people aged over 65 account for the majority of the 50 million EU citizens who suffer from two or more chronic conditions. Meanwhile, it is estimated that demographic ageing in Europe will mean that the number of people aged 65 years and over will increase to almost 130 million by 2050. Therefore, although Europeans are living longer, increased lifespans can be associated with declining health and a greater prevalence of chronic disease and physical and cognitive impairments (UN Special Rapporteur on the Rights of Persons with Disabilities, 2019).
SHAPES (Smart and Healthy Ageing through People Engaging in Supportive Systems) is an EU funded project working to develop a pan-European online platform that will provide a range of supports to older persons to facilitate their continued healthy and independent living. The project brings together thirty-six partner organisations and research institutions, across fourteen European countries, with expertise in health, social sciences, IT development, robotics, healthcare, care service provision and advocacy. Under the supervision of Prof. Delia Ferri, Co-Director of the ALL Institute, my role within SHAPES involves researching the relevant EU legal framework and investigating the extent to which it can best support the provision of inclusive, integrated health and care services.
Author: Matthew McKenna, PhD Researcher at Maynooth University’s Assisting Living and Learning Institute (ALL Institute)
Matthew McKenna
The European Union (EU) is arguably emerging as a global leader in the ethical and human rights-based regulation and deployment of Artificial Intelligence (AI) in healthcare, domestic and wider societal settings in the twenty-first century. On the 8th of April 2019, the EU High-Level Expert Group on AI presented ‘Ethics Guidelines for Trustworthy Artificial Intelligence’. This followed the publication of the guidelines’ first draft in December 2018 on which more than five hundred comments were received through an open consultation.
According to the Guidelines, trustworthy AI should be:
(1) Lawful – Respecting all applicable laws and regulations
(2) Ethical – Respecting ethical principles and values
(3) Robust – Both from a technical perspective while taking into account its social environment
Author: Matthew McKenna, PhD Researcher at Maynooth University’s Assisted Living and Learning Institute (ALL Institute)
Matthew McKenna
On March 24th, we celebrate the United Nations International Day for the Right to the Truth Concerning Gross Human Rights Violations and for the Dignity of Victims. This day honours the memory of victims of gross and systematic human rights violations and promotes the right to truth and justice. In this context, it reminds us of historical and contemporary violations of the rights of persons with disabilities who, in many regions, still experience institutionalization, forced treatments and conditions amounting to torture. This piece briefly discusses the post-modern chronology of suffering endured by persons with disabilities in the struggle for equal treatment and recognition. It emphasises the importance of remembering victims of the past by advancing the struggle for full-spectrum equality for persons with disabilities in the modern world.
The World Braille Day: Celebrating the Importance of Braille for the Full Realization of Human Rights of Persons with Disabilities – in Maynooth University, Ireland. Voiced by Hilary Hooks.
Authors: Deirdre Desmond, Delia Ferri and Mac MacLachlan; ALL Institute Co-Directors
Deirdre Desmond, Mac MacLachlan and Delia Ferri, ALL Institute Co-Directors
“Life is not a series of gig lamps symmetrically arranged; life is a luminous halo, a semi-transparent envelope surrounding us from the beginning of consciousness to the end” Virginia Wolf, ‘Modern Fiction’, 1921.
2020 was certainly a difficult year for many of us, both on personal and work levels, and, despite these challenges, it is noteworthy that the work of the ALL Institute has not only proceeded, but also the commencement of several research projects ensure that we will continue to contribute in many respects to the building of a fairer society. In the past three years, and more so in 2020, we have endeavoured to reach out to different communities and stakeholders at the local, European and global levels. We also launched this blog on the 3rd December 2020, a particularly significant date, the International Day of Persons with Disabilities, to signal our commitment towards inclusion and equality.
