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: Hilary Hooks, Project Manager, Protecting the Right to Culture of Persons with Disabilities and Enhancing Cultural Diversity in EU Law: Exploring New Paths (DANCING) Project
The DANCING project, led by Principal Investigator (PI) Professor Delia Ferri, aims to investigate participation in culture by persons with disabilities. Access is a critical issue in all areas of life for people with disabilities. This includes the area of culture, and concerns people with disabilities who are (or who wish to be) involved at all levels, including as artists, arts-professionals, and audiences.
Author:Dr Holly Foley, PhD, Project Manager at the Digital Wealth Project, UDL Digital Badge Lead Maynooth University
Research Stream: Lived Experience
Digital Wealth: An Overview
As we pass the sixth anniversary of the ALL institute it’s a perfect time to reflect on how our research has grown and developed under the ethos of the institute. The Digital Wealth Project commenced in March of 2021 for a 3-year project and funded through Rethink Ireland and Microsoft Ireland led by Dr Katriona O’Sullivan and Dr Holly Foley.
The aim of the Digital Wealth Project is to tackle Digital Poverty. Digital Poverty is not income-dependent, instead it relates specifically to being able to access the digital resources (materials, skills, training, infrastructure) necessary to enjoy a basic standard of living.
Authors: Linda Mc Donald and Jamie Moore are 3rd year BSc Psychology Students, Research Interns for Dr Katriona O’Sullivan, and the STEM Passport for Inclusion Project, at the ALL Institute in Maynooth University
Research Stream: Stories/ Lived Experiences
This week marked a monumental one for us here in the STEM Passport for Inclusion project. Our programme is a project within the ALL institute here in Maynooth University. It provides socio-economically disadvantaged young girls in Ireland an opportunity to learn about STEM, one that is not easily accessible to them usually. This week both the Women in STEM awards and graduation ceremony for our girls who took part in the programme took place, highlighting and celebrating the need for a focus to expand knowledge and opportunities for education and involvement in STEM.
The Women in STEM awards in association with PEPSICO took place on Thursday, which recognises and rewards the accomplishments and efforts of women in the sectors of science, technology, engineering and mathematics (STEM). These women strive to improve and innovate their respective fields of work. It is important that their efforts are recognised and encouraged, to promote inclusion in the field of STEM. In addition, the awards bring attention to the need for more women in STEM, an ongoing and prevalent issue in today’s society. The Women in STEM Awards are judged by several women who have reached these top-level jobs and remained in them, against the odds. Two members of the impressive judging panel included Gillian Harford and Susan Treacy. Gillian Harford is a senior HR Executive who works with organisations aiming to target diversity and workplace change. While working as a Head of HR Strategy & Planning for AIB, Gillian contributed to people change with respect to Culture, Career, and Diversity. Susan Treacy is the CEO of HealthTech Ireland, and is a member of the Women in Technology and Science (WITS) Ireland Executive. This organisation helps to support and empower women in STEM, and advance STEM policy at government level. These influential women have themselves improved and innovated their respective fields of work and are hence qualified to judge the efforts of others.
The STEM Passport for Inclusion programme, working with Maynooth University and partners, was nominated for the award for Diversity & Inclusion Initiative of the Year. The feelings of excitement and anticipation as we waited for the winner of the award to be announced, could be felt by everyone in the room. To our delight, the STEM Passport was awarded the honour, an accomplishment that recognises our hard work and effort. Though the STEM Passport for Inclusion won the award for best Diversity & Inclusion Initiative of the Year, the fellow nominees of the category deserve equal recognition for their efforts to improve and innovate the field of STEM. Whilst it appears as though the organisations were in competition for the award, they were in fact working towards a common goal – to improve diversity and inclusion in the field of STEM.
There was no time to rest following the awards ceremony, as the following day was our graduation ceremony for over 400 girls who had taken part in our programme. Dr. Katriona O’Sullivan, who leads the STEM Passport for Inclusion programme, kicked off the graduation ceremony by introducing the project and congratulating all those receiving their level-6 accreditations. She then introduced the president of Maynooth University, Prof. Eeva Leinonen, who is actively involved in national and international higher education policy discourse and implementation, who briefly spoke about the initiative and its impact and congratulated all the girls for completing the module. After speaking, both Prof. Leinonen and Dr O’Sullivan, helped by Dr Gemma Irvine, Vice President for Equality and Diversity in Maynooth University, began to hand out the certificates to the girls who had completed the module. The girls each went up and received their well-deserved accreditation, thus graduating from the programme – a monumental moment for all parties involved.
Once the graduates had received their certificates, Ava Kenny, a former student of the programme, was welcomed to the stage to talk about her experience with the programme and the pathways it opened for herself. Ava, who is currently studying a science degree in Maynooth University, gave an emotional reflection on what the STEM Passport means to her, stating the programme was “a journey of self-discovery, of finding my passion and purpose. It sent me on a path where I could dream big, aim high, knowing that the STEM Passport welcomed me with open arms”. Ava beautifully captured the transformative and significant impact the initiative had on her life, surely inspiring all the graduates in the room, offering them a glimpse into the future possibilities their newly acquired accreditation can offer.
After Ava’s reflection, Dr Kevin Marshall, the newly appointed Adjunct Professor at Maynooth University’s ALL Institute, joined the stage to say a few words. He highlighted the graduates’ achievement, “to get the university qualification while you’re at school is just amazing”, offering his admiration and support for all the girls. He then passed the mic over to Katriona to close out the graduation ceremony. Once the ceremony was over, everyone headed over for pizza and refreshments, a well-deserved treat for both our girls and team members.
For our focus on accessibility to STEM education and inclusion within the field to be recognised by such a prestigious award is an honour. Furthermore, for it to be followed by the graduation ceremony, which allows us to reflect and recognise those efforts first hand, to be in the same week, has been nothing short of fantastic. These inspiring young girls, now adorned with their accreditations, now take one step further into the world of STEM. Both ceremonies recognise the work put in to pave the way for a more diverse and inclusive future in STEM – from both the team of today and the future women in STEM who took part in our programme.
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: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: 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: 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.
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 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.
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.
