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.
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.
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.
Author: Mohamed Maalim – PhD Researcher at the ALL Institute, Department of Psychology, Maynooth University, and Senior Occupational Therapist and Project Lead, Digital Assistive Technology at Stewartscare
Research Stream: Lived Experience
A pivotal milestone in the calendar approaches as we come to the end of November. An occasion meriting grand celebration – the ALL Institute marks its sixth anniversary, a landmark that coincides with the 3rd anniversary of its stirring initiative, the ‘Ideas in All’ Blog. As a former editorial team member, I was asked to reflect upon my association with the institute and share insights into my enduring journey with the ALL Institute and the ‘Ideas in All’ Blog.
I joined the ALL Institute, drawn in by its ethos of ensuring that everyone, regardless of their circumstances, has the support and opportunity to participate fully throughout their lives. This ethos was further embodied through the blog, focusing on inclusivity, accessibility, diversity, and participation.
Author: James Cawley, Maynooth University Alumnus, 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
Research Stream: Lived Experience
First, I want to extend my sincere congratulations to the ALL Institute team in marking the sixth anniversary of the ALL Institute at Maynooth University. Equally, I am delighted to contribute to the end of year symposium for the third anniversary of the Ideas in ALL Blog.
My name is James Cawley, I have contributed to the ALL Blog over the last 3 years. For me, the Blog remains an important channel to showcase empowerment and tackle social exclusion.
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 disability convention should accelerate the trend underway in most corners of the world toward respecting and advancing the rights of persons with disabilities. It will reinforce reform efforts underway in many countries. It will help put in place a dynamic of reform in those countries that have yet to begin a serious reform effort’ (Quinn, as cited in Quinn and Waddington ed., 2009, p. 114).
The above quote from Quinn and Waddington was made in the aftermath of the entry into force of the United Nations Convention on the Rights of Persons with Disabilities (CRPD/Convention) in 2008. Their prediction proved to be correct as the CRPD provided a global framework for the advancement of human rights for and by, persons with disabilities, and helped to bolster existing frameworks for legal and policy reform efforts. It also helped to usher in new multilateral initiatives and strategic programmes to tackle disability discrimination and was intended to foster inclusion and human rights for all people irrespective of age or disability status. Whilst its implementation is still very much a work in progress, the CRPD proved to be a pivotal legal and policy instrument of international law by highlighting the discriminatory and inaccessible nature of modern society, thus raising the question of a need for a UN Convention on the Rights of Older People. On 1st October, the UN International Day of Older Persons, this proposed convention is worthy of serious discussion and renewed consideration.
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:Firdavs Kabilov, PhD Fellow at the Maynooth University School of Law and Criminology, Maynooth University
Firdavs Kabilov
Climate change has become a defining global challenge, with far-reaching implications for the governments and businesses. As the urgency to address climate change increases, novel avenues are being explored to catalyse action. One such avenue is climate litigation, a strategy that seeks to hold governments and businesses accountable for their contributions to climate change. The United Nations Environment Programme’s latest report Global Climate Litigation Report: 2023 Status Review shows that climate change-related lawsuits have substantially increased in recent years. As of December 2022, there were 2,180 climate-related cases filed in 65 jurisdictions, including international and regional courts. This brief post will focus on some of the most recent and notable cases to highlight emerging trends on climate change litigation and their impact on government policies and business practices.
Author: Rachel Brown is a PhD candidate at the Department of Psychology, Maynooth University and a Research Assistant with the ALL Institute’s SHAPES project
Rachel Brown
Like many of you, I recently watched Christopher Nolan’s biographic film documenting theoretical psychist Robert Oppenheimer’s involvement in the Manhattan Project and the creation of the first nuclear weapons. Although I enjoyed the film, I was left with a strange sense of unease about scientific knowledge and the power that knowledge has to change the world, and not always for the better. As I drove home, I considered my own responsibilities regarding the knowledge my research will produce. Needless to say, the 20-minute car journey home from the cinema felt very long that day.
Shortly after seeing the film, I came across Oppenheimer’s 1956 address to the American Psychological Association (APA) entitled Analogy in Science. It was an engaging and eloquently written speech and I assure you it is well worth the read. Intriguingly, he gives a stern warning to the field of psychology, while given at the height of behaviourism with widespread fear of mind control over individuals and society, 68 years on Oppenheimer’s warning seems just as relevant now as it did then.
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 mission and work of the Assisting Living and Learning (ALL) Institute implements a novel, inclusive, and human-rights based perspective on ‘the development and application of appropriate technologies, person-centred systems and evidence-based policies and laws’. This highly complex and entangled web of social, legal, scientific and philosophical disciplines requires the skills and input from persons and professionals from a hugely diverse array of fields, who all share the common unifying goal of promoting a human-rights based approach to social inclusion, development and technological integration in society. Inclusive social policies and laws play a critical role in ensuring the equitable realisation of these goals. However, in order to challenge and disassemble discriminatory power structures supported by non-inclusive laws and policies inherited from an often problematic and segregated human history, it is imperative that future decisions are made with ‘eyes wide open’ to the role of humanitarian and inclusive discourse. These goals can only be achieved with social awareness and utmost caution to the powers of discourse, and through an understanding of how past wrongs can be repeated when there is collective ignorance towards the immense social influence and symbolic force wielded by language and social interaction.
“Every discourse, even a poetic or oracular sentence, carries with it a system of rules for producing analogous things and thus an outline of methodology”(Jacques Derrida, 1995)
Author: Gizem Yardimci, Early Career Researcher at ADVANCE CRT, PhD Student with Assisting Living and Learning Institute (ALL Institute) and School of Law and Criminology, Maynooth University
Gizem Yardimci
The recent Turkish elections concluded a few weeks ago, marking one of the highest electoral turnout processes in Turkish history. This blog, which draws on my PhD research, aims to critically analyse the recent intense election process in Türkiye, examining the relationship between voter participation and the role of digital platforms, to ascertain the extent to which we can actually consider these elections “fair” and “free”. According to the Supreme Election Council of Türkiye, 88.92% of voters participated in the first round, and 85.72% in the second round. However, does such high participation serve as an indicator of the elections being conducted in a democratic, free, and fair environment? According to political scientists, high participation in this instance reflects a highly polarized and intense two-round election marathon. Additionally, digital platforms played a crucial role in communication for both parliamentary candidates and the four presidential candidates just before the first and second round.
On 14 May 2023, four candidates ran for the presidency. Turkish citizens living abroad also had the right to vote, and the process for these voters had begun weeks before the electoral day. However, days before the election, one of the candidates, Muharrem İnce, withdrew, resulting in a shift in the votes of domestic electorates. However, voters living abroad had already cast their votes. This news can be interpreted as an indication that the electoral process, as carried out, was not equal in terms of timely access to information, at least for voters living abroad. In addition, it should be highlighted that there are potential risks if citizens living abroad vote in advance, especially in an election where the results are quite close.
Author: Dr Opeyemi Kolawole (Post-doctoral Researcher, PatentInHuman Project)
Dr Opeyemi Kolawole
Medical devices are integral to healthcare service delivery. Patients and healthcare service providers utilise these devices to diagnose, prevent, monitor, alleviate, and restore impaired body functions. Depending on the complexities of these devices and how they are deployed, they can become integrated with the patient’s body, and the patient’s healthy functioning and life may become dependent on the device (for example, an insulin pump or a pacemaker). Yet, like every other device, medical devices are susceptible to wear and tear: embedded software in the device may become obsolete over time, and physical elements may become deficient, making a device unsuitable for the patient’s needs. What options are available to the patient or health service provider in such instances? Should they, or a trusted repairer, be allowed to repair these devices? Patients and hospitals confronted this question at the height of the COVID-19 pandemic.
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.
On 20th April 2023, the PatentsInHumans team were delighted to host the public launch event for the European Research Council (ERC) funded PatentsInHumans project in Maynooth University. The event was attended by over 45 individuals, including, members of the public, students and academics working in a range of disciplines (including law, biology, political science and business), practising lawyers, and technology transfer specialists.
The PatentsInHumans project, based in the School of Law and Criminology and ALL Institute at Maynooth University, commenced on the 1st November 2022 and is a large interdisciplinary five-year project. It is funded by a European Research Council (ERC) Starting Grant and led by Professor Aisling McMahon. Alongside Professor McMahon, the PatentsInHumans team includes project manager, Sinéad Masterson, and postdoctoral researcher, Dr Opeyemi Kolawole. As the project develops, we will be recruiting more researchers to join the team in the coming months and years ahead.
Author: Joan Alaboson is a Doctoral Researcher in the Department of Psychology, Maynooth University. She has a background in medicine and an MSc in Public Health with broad research interests in non-communicable diseases, particularly mental health, social determinants of health and quality of life.
Joan Alaboson
‘What can be done to make settling into the PhD, better?’ asked Dirk, the Director of the Science Foundation Ireland’s Centre for Research Training in Advance Networks for Sustainable Societies (ADVANCE CRT) at a meeting with funded PhD students. Being the only one in the room that had recently commenced my studies, at that moment I felt there was a deep sense of concern for my well-being by ‘management’. It was the first of such fora I’d attended, and I left with a lasting impression of being in relatable company during my studies.
True inclusion, however, could often be elusive, despite best efforts. There is hardly any organization, entity or group that does not seek to represent the interests of those concerned. It may be expressed in a vision, mission, goals, or activities. Yet, many can be left out. Sometimes, it is a fault inherent in group development, when diverse people are not present to consciously bring unique perspectives to the fore. Similarly, it may result from work protocols or culture that fail to recognize and may neglect, systematically, the views and or needs of diverse people.
Author:Neasa Boyle, PhD Researcher, Assisting Living and Learning (ALL) Institute, Department of Psychology, Maynooth University
Neasa Boyle
It’s impossible to overlook how deeply technology has influenced daily life, employment, and education today. With its growing importance, education systems must adapt to ensure that students are prepared for the modern digital world and obtain the skills to navigate a technologically advanced society. However, such education streams have only been implemented in recent decades, limiting social inclusion for individuals who are out of education, training, or employment. This new demand for digital skills leaves a large proportion of the population with the responsibility of upskilling, or else facing the risk of being left behind in the current job market and, ultimately, being left unable to participate in the society.
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
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.
