Editorial Board

Tuesday May 30th: World MS Day

Lived Experiences

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 30^th 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.

Nothing Without Us: Considering Public Patient Involvement in Research

Social Technologies

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.

‘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.

Let’s Get Digital – Tackling Digital Poverty for all in South Dublin

Social Technologies

Author: Neasa Boyle, PhD Researcher, Assisting Living and Learning (ALL) Institute, Department of Psychology, Maynooth University

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.

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.

My First St. Patrick’s Day in Ireland, a Sharp Reminder of Moments Past Lived

Stories/Lived Experience

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

Every experience is different. And my late grandpa told me, when I was a few days to my 20^th 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.

17^th 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.

Rapid Neonatal and Maternal Sepsis Detection in Resource Limited Environments

Social Technologies

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.

The Right to Health of Vulnerable and Marginalised People in Ireland

Social Structures

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.

‘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.

GoGreenRoutes: Near Nature: Green Space and Environmental Justice

Social Lives

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

Flyer of the Conference on Near Nature: Green Space and Environmental Justice — 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.

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