Author:Eva Krolla Research Assistant DANCING, in dialogue with Professor Delia Ferri and Lucy Glover, Executive Producer at Stopgap Dance Company
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:Ilia Marcev, PhD Candidate at the Department of Psychology, Maynooth University, and a Research Assistant with the ALL Institute’s SHAPES Project
Ilia Marcev
Unless your internet connection has been as unreliable as the weather forecast, or you were marooned on a desert island over the past few weeks, there is a strong chance you heard of the alleged “alien” bodies discovered in Mexico recently. While this strange discovery made international news, it drew very poor engagement and attention from the average UFO-enthusiast, let alone the average person like you and me. I believe it is fair to say that ten years ago this story would have exploded like a supernova across the internet, but today, the majority of people seem rather unconcerned with this novel development in humanity’s timeline. I can only speculate that the reason the world is unconcerned with potentially discovering our Martian neighbours is because, as exciting as alien intelligent life may sound, we are likely far closer to discovering new intelligent life here on Earth that would rival our own. This new intelligence is better known as – Artificial Intelligence (A.I.).
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: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 Bio:Dr Rebecca Maguire is an Associate Professor in the Department of Psychology at Maynooth University. Her research interests include health and wellbeing in chronic illness, caregiver burden, health-related expectations, qualify of life and psycho-oncology. In addition, Rebecca has been living with multiple sclerosis for a number of years, which has influenced her research agenda. She is also a board member of MS Ireland.
Dr Rebecca Maguire
Tuesday 30th May marks World MS Day – an occasion celebrated by the global MS community with the aim of raising awareness of the condition known as multiple sclerosis (MS). In Ireland, it is estimated that approximately 9,000 people live with MS, however this number could be higher, with one study suggesting that around 300 people are diagnosed in the country every year. Internationally, almost three million people live with the condition, with rates twice as high in women than in men.
Simply put, MS is a chronic, often progressive, neurological condition in which the body’s immune system attacks the central nervous system, resulting in damage to myelin, thereby disrupting signals to and from the brain (see definition from the US National MS Society). Anecdotally, almost all people will have heard of MS, with many having a family member, friend or colleague living with the condition. However, few people will truly understand what MS is, unless, of course, they live with it themselves. To a certain extent I am privileged in this respect, having lived with MS for a number of years now, although my experience has also made me very aware that no two people with MS are the same. The disease can have wide-ranging, fluctuating and variable impacts for those affected, potentially leading to high levels of disability for some, while having minimal effects on the lives of others. Similarly, although some people with MS may require the support of caregivers, many others continue to live independently, holding down demanding jobs, juggling caring responsibilities and whatever else live entails. However, for almost all affected, MS and its management brings additional physical and psychological burdens which can, at times, be difficult to navigate.
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:Harry Chikasamba, PhD Researcher, Assisting Living and Learning (ALL) Institute, School of Law and Criminology, Maynooth University
Harry Chikasamba
Every experience is different. And my late grandpa told me, when I was a few days to my 20th birthday, that ‘…in experience, we learn more about ourselves and others. You should be an ardent learner of life, through lived experiences.’ With that in mind, I became a learner of life. And everything fun, and beautiful.
17th March 2023 brought about its own lessons, unique and memorable. Most importantly, the day took me down memory lane. For the Irish, and several others, one needs no sermon about this day. No! St. Patrick is well-known across cultures and races. He was, and remains, a core part of the Irish culture – and identity.
Authors: Nicola Mountford, Assistant Professor, School of Business, Assisting Living and Learning Institute (ALL), Maynooth University and Sean Doyle, Professor, Department of Biology, Maynooth University
Neosepsis project logo, Sean Doyle, Nicola Mountford
Over 32,000 neonatal deaths occur per annum in Uganda, with sepsis accounting for 20% of this death rate – that’s 6,500 newborn babies who die of sepsis in just one country in the world. That’s not all, sepsis also accounts for almost a quarter of maternal deaths in Uganda. Our project, NEOSEPSIS, aims to reduce these numbers by introducing an easy-to-use, 15 minute lateral flow test to help to better diagnose sepsis in resource limited environments, such as Uganda.
The test detects Serum amyloid A, or SAA – a globally validated biomarker of sepsis. The lateral flow test used in this process is very similar to the type of antigen test that you might have used to help diagnose whether or not you had Covid-19. It is just as user-friendly, rapid, and equipment-free as one of those Covid antigen tests. This makes it particularly suited to environments where it might be difficult to take, store and transport samples.
Author: Ollie Bartlett, Assistant Professor of Law, Assisting Living and Learning (ALL) Institute, School of Law and Criminology, Maynooth University
Ollie Bartlett
The world was clearly inadequately prepared to fight Covid-19. An important factor in this was the inadequacy of public health law frameworks at international, regional and national level. Political attention quickly turned to the creation of a new pandemic treaty and the revision of supranational rules concerning cross-border health threats, comparatively little attention has been placed upon the role that the right to health should have played in shaping Covid-19 policy, or what role it should play in the future development of public health policy.
I have written on this question in the Irish context, and concluded that the debate begun in 2019 on the need for a right to health in the Irish Constitution is worth returning to. A constitutional right to health would support clearer and more proportionate public health decision-making, and may facilitate more direct challenges to government policies that have unacceptable or inappropriate consequences for health outcomes.
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.
