All Institute

Chimeras and the future of medicine – Balancing medical innovation with moral boundaries

Research Stream: Social Technologies

Author: Sharon Adedapo, Research Assistant, PatentsInHumans Project, ALL Institute and Department of Law and Criminology

In September 2024, the European Patent Office (EPO) denied the University of Minnesota’s patent application (EPO decision T 1553/22) for developing human-animal chimeras by putting human stem cells into animal embryos, such as pigs. It would empower pigs with the ability to produce human stem cells and blood vessels, thus facilitating the harvest of organs that are compatible with humans. The main goal was to address the severe lack of suitable donor organs, and in turn, lessening the long waiting lists seen worldwide. While this case focused on the patentability of the technology, it raises broader debates about the ethical boundaries of human-animal chimera research and morality.

Piglets sleeping on a stack of hay — Image by MabelAmber via Pixabay

The EPO cited ethical concerns under Article 53(a) of the European Patent Convention (EPC). Article 53(a) expressly prohibits patents that violate “ordre public or morality”. Put simply, ‘ordre public’ refers to the protection of the environment, public safety, and individuals. ‘Morality’ pertains to behaviours that are deemed to be right or acceptable according to deeply ingrained European cultural values. Article 53(a) is complemented with the EU Biotechnology Directive which explicitly states that “processes, the use of which offend against human dignity, such as processes to produce chimeras from germ cells or totipotent cells of humans and animals, are obviously also excluded from patentability”. It is important to note that these provisions address concerns related to the commercial exploitation of morally contentious technologies, not specifically their scientific use. The EPO’s remit is limited to patent law and does not regulate the use of the technology.

In Greek mythology, a ‘chimera’ was a fire-breathing hybrid mythical creature with the head of a lion, the body of a goat, and the tail of a serpent. Today, the term has taken a completely different meaning in science. In simple terms, a ‘chimera’ is now used to describe an organism composed of cells from two or more genetically distinct entities. Human-animal chimeras have been widely used in research to study neurodegenerative diseases, genetic disorders, and cancer treatments, and to grow transplantable organs. There is considerable research or interest around the potential for the use of human-animal chimeras for organ transplant in the future. However, significant ethical and moral considerations and scientific challenges arise in this context. The primary question, being: Where should the line be drawn between scientific progress and moral/ethical responsibility?

The field of biotechnology combines biology with technology to develop innovative solutions that improve human health and sustain the environment. It has transformed sectors such as healthcare, agriculture, and diagnostics, playing a vital role in the development of new medications, life-saving vaccines, and advanced medical tools. One emerging application is the development of human-animal chimeras. Scientists have introduced human stem cells into animal embryos, such as pigs, with the aim of growing organs compatible with humans for transplantation. This process, which uses techniques, such as genetic engineering and stem cell manipulation, is driven by the urgent need to address the global shortage of donor organs.. Thousands die each year while waiting for organ transplants, and chimeras may offer a promising solution by producing organs less likely to be rejected by the recipient’s immune system. Despite the potential, the science remains complex and uncertain, with many questions around feasibility and long-term outcomes. Moreover, the development or use of human-animal are not currently permitted in many jurisdictions due to ethical and legal concerns.

Despite the potential medical benefits of human-animal chimeras, they raise significant ethical concerns such as; cognitive enhancement and human-like consciousness, the development of human physical traits in animals, the production of human gametes in animals, the risk of new diseases, and moral and species boundaries. A key concern for the EPO in the 2024 case was the possibility of human cells integrating into an animal’s brain or reproductive system, leading to unforeseen consequences. The EPO’s Board of Appeal (BOA) held that patenting such technology may violate human dignity if they make a substantial contribution to a chimera’s cognitive development. They found that despite the potential therapeutic and medical benefits of the invention, they could not dismiss ethical concerns relating to the patentability of this type of technology under European patent law. Another major issue is the precedent that such research would set for the monetisation of human biological material. Critics argue that the development of human-compatible organs in animals blurs the line between species, presenting difficult questions regarding control, exploitation, and ownership of partial human life forms. The tension between ethical responsibility and scientific innovation is not a new debate in the field of biotechnology. Past cases, such as the Oncomouse/Harvard University case (T 19/90) illustrate the EPO’s attempt to strike a balance between medical benefits and ethical issues.

Ethical objections to human-pig chimeras remain strong, particularly because of the concern regarding cognitive humanisation and the potential for the development of ethically significant features. To prevent chimeric organisms from developing consciousness or self-awareness, many bioethicists support strict safeguards, such as ensuring that human cells do not fuse into brain tissue. Many researchers and scientists argue that scientific research should be conducted with caution until we can conclusively determine the moral status of chimeras. Others suggest that the speculative ethical concerns are outweighed by the life-saving potential of these advancements. However, without clear and explicit safeguards, the scientific community seems to still be unsure as to how much chimera research should be conducted.

Just as the ALL Institute is committed to interdisciplinary research that enhances the lived experiences of individuals, the research on chimeras calls us to consider not only medical advancements but also the social and moral implications of these breakthroughs. At the heart of the ALL Institute’s approach is a commitment to people-centered care that addresses clinical, emotional, and social needs, which is particularly relevant when we look at chimeric research. Can chimeric research strike a balance between the pursuit of medical progress and the protection of human values, ensuring that innovation in one area does not unintentionally harm others?

The Advocacy Shift: From Silence to Empowerment in Clinical Psychology

Research Stream: Stories/Lived Experience

Author: Sarah Hooney, Research Assistant, Integrated Advisory Services, Maynooth University Assisting Living and Learning (ALL) Institute.

During my undergraduate degree, I completed a three-month assistant clinical psychologist placement in the Mater Misercordiae University Hospital, working within the National Centre for Inherited Metabolic Disorders (NCIMD). This experience deepened my understanding of clinical psychology – not just as a tool for diagnosis and treatment, but as a form of advocacy and justice.

The NCIMD is a multidisciplinary team treating rare genetic metabolic disorders, such as phenylketonuria (PKU) and Hunter’s Syndrome. Metabolic disorders can have very complex symptoms, including both medical and psychological impacts. For example, severe symptoms of untreated PKU include behavioural problems, developmental delays, intellectual disabilities, and even seizures. In the NCIMD unit, I observed that the psychologist’s role involved assessing cognitive and behavioural challenges in clients and helped develop care plans. Additionally, I saw psychologists offering mental health support for those navigating life with chronic illness. This involved providing the appropriate therapeutic methods or referral to a psychiatrist if alternative testing is required.

Clinical Team in a room with a screen with some wearing medical uniforms

Throughout my placement, I shadowed the team’s clinical psychologist, speaking with clients one-on-one and providing behavioural assessments where necessary. From the first week, it became immediately clear that the job description given to us prior to starting placement barely scratched the surface of what the job looked like day-to-day. I noticed how the psychologist often acted as a bridge between the client and the medical team—speaking up for them, supporting them beyond medical intervention, and helping their voice be heard. At times, while the consultants might be focused on what’s considered the best clinical option, the client may face negative psychological side effects that make treatment more burdensome than beneficial. In those cases, the psychologist seemed to advocate on the client’s behalf to help find a more balanced solution – one which improves the client’s quality of life but is also medically sound. In-clinic sessions appeared to allow clients to vent openly about the situational difficulties they are facing. In these sessions, the psychologist gains key insights and communicates with the rest of the team to help the development of collaborative, person-centred care plans.

Working with this group presented several ideas that I had the privilege of never having to consider before. The NCIMD is the only specialist centre in the country for metabolic disorders, meaning many clients travel long distances, face transport difficulties, or require disability accommodations to attend appointments. These issues can become significant barriers in both access to care and client wellbeing – and are central to whether a client can even engage with the services available to them. During my placement, I struck me how the psychologist often found themselves dealing with these concerns and ensuring that the care was as accessible as possible. Genetic conditions don’t account for geography, but these individuals still require the same level of care regardless of location. In these moments, the psychologist seemed to take on the advocacy role – not just offering emotional and cognitive support – but also helping ensure that no one is left behind due to where they live or the barriers they face within the system.

I had the opportunity to spend a brief time shadowing the senior clinical psychologist of the Renal Medicine Unit, which highlighted the nuanced differences in psychological work across medical specialties. In renal care, a multidisciplinary team – including consultant physicians, nurses, nutritionists, medical social workers, and psychologists – collaborate to support clients navigating the emotional challenges of chronic illness and managing mental health alongside physical symptoms. Psychologists contribute by assessing patients’ readiness for transplant by looking at treatment adherence, and by advocating for patients during major clinical decisions. Through building relationships with vulnerable individuals, psychologists provide insights that can influence outcomes, including decisions around eligibility for life-changing transplants.

Throughout my time at the Mater, I gained invaluable insights into the collaborative dynamics of patient care. I observed that, alongside assessments and therapeutic interventions, psychologists play a vital role in patient advocacy, ensuring that care plans are both clinically effective and personally meaningful. This experience underscored the importance of each team member’s contributions in delivering comprehensive and client-centred care. My main takeaway from the experience was that in clinical psychology, empathy, communication, and advocacy are just as crucial as clinical expertise. This experience strongly aligns with the mission of the ALL Institute, which is committed to interdisciplinary research that enhances the lived experiences of individuals with chronic illnesses. Just like in the ALL Institute, the clinical psychologist’s role involves advocating for systemic flexibility and finding creative solutions that make an inherently unfair situation as equitable as possible.

Sarah Hooney – Author

SWINS: Rethinking Social Services for a Sustainable Future

Authors: Alessia Palladino Research Assistant, Protecting the Right to Culture of Persons with Disabilities and Enhancing Cultural Diversity in EU Law: Exploring New Paths (DANCING) and Prof. Delia Ferri, Co-Director of ALL Institute and Professor of Law, Maynooth University.

Research Stream: Social Lives

On Thursday, 27^th of March, the School of Law and Criminology and the ALL Institute hosted an event to launch a new Horizon Europe project called SWINS- Sustainable Well-being through INvestment in Social Services.

SWINS wants to present a new framework for measuring the return of social services investment both in an economic and social perspective, considering how these investments influence key aspects of life like employment, income or economic growth, but also inclusive and sustainable well-being. SWINS aims to introduce a groundbreaking framework to measure the impact of social service investments from both economic and social perspectives. Therefore, ‘SWINS seeks to help policymakers determine where to allocate their resources, in order to be sustainable and yield the highest social returns’. In this respect the project speaks to the core objectives of the ALL Institute and to its ethos, and supports ALL’s comprehensive and human-rights based approach to social inclusion.

The SWINS project is coordinated by Università di Firenze – PIN ARCO, and includes a broad consortium of which Maynooth University is a member. The Maynooth team involves Professor Delia Ferri and Dr Charles O’Sullivan, who will specifically investigate the role of the European Union (EU) in supporting (or constraining) social investments. Prof. Ferri and Dr. O’Sullivan will carry out a ‘legal mapping’, focusing on state aid, competition and free movement law.

SWINS Logo

The event was warmly opened with welcoming remarks by Professor Fergus Ryan, Head of the School of Law and Criminology, and Professor Deirdre Desmond, Co-Director of the ALL Institute. Dr Federico Ciani, Coordinator of the Inclusive Development Research under ARCO, presented the core tenets and objectives of the project, highlighting how the EU is currently facing structural changes that require rethinking of the current model of social investments. In his talk, Dr. Ciani discussed the links between productivity and sustainable development, highlighting the necessity of providing a new framework for assessing these factors. In this connection, the role of SWINS will be pivotal in reconstructing the relation between social services and economic growth in a sustainable framework.

In their speech Prof. Ferri and Dr. O’ Sullivan highlighted how SWINS builds on a rights-based approach to social services and their deployment. They further discussed the potential role of EU law and policy in supporting investment in social services, considering the EU competences.

The event proceeded with a very thought-provoking presentation by Vincent Power, SC Adjunct Professor at Maynooth University School of Law and Criminology. Vincent Power focused on the role of the EU in enabling, rather than constraining, national investments in social services. He further highlighted that there still is a large margin for change, allowing for fundamental developments in the field of social services.

The idea of the EU as a constantly evolving legal entity was also picked up by Professor Bernardo Cortese, whose presentation revolved around social citizenship, debating its inclusivity in European societies. Prof. Cortese discussed the links between individuals and the community they live in, considering how the concept of society itself demands for rights. He also discussed the ‘diminished’ rights enjoyed by third country nationals and the ‘shades’ of EU citizenship in relation economically active and non-economically active citizens .

The event continued with a stimulating presentation by Prof. Juan Jorge Piernas López on state aid and its links to social services, considering both the national and EU competence in this field. Professor Leigh Hancher subsequently built on her experience as a legal practitioner and scholar to discuss the role of the EU in relation to housing services and sustainable energy, highlighting the challenges in reconciling EU and national competence. Dr Christopher McMahon then provided insightful comments on all presentations that gave inputs on the future of the SWINS research.

Picture of speakers in the event room L-R: Vincent Power, Karen Lynch Shally, Charles O'Sullivan, Federico Ciani, Leigh Hancher, Delia Ferri, Bernardo Cortese, Christopher McMahon

On the whole, the event afforded the opportunity to reflect on the need to conduct interdisciplinary research which responds to current challenges. SWINS emphasises that the EU can and will play a fundamental role in the evolution of social services, especially through the array of policy strategies it currently presents. At the same time, SWINS also embeds one of the core principle of the ALL Institute, that of Leaving No One Behind, a commitment that aligns with the EU’s broader social agenda.

Remote Work as Reasonable Accommodation: Insights from Italian and Irish Case Law

Author: Giulia Sberna – PhD candidate in Public administration and innovation for disability and social inclusion at the University of Palermo and University of Campania “L. Vanvitelli”; Visiting PhD Researcher at the School of Law and Criminology & the ALL Institute.

Research Stream: Social Structures

The new millennium has been characterised by the adoption of advanced technologies and new organisational models hat have transformed the work environment. In this new employment context, “flexibility” has become a buzz word: flexibility characterises job roles, but also the places where work is carried out, which have moved beyond the traditional confines of factories and public offices and into digital spaces, made possible by the use of the Internet and other ICT tools.

Remote working has thus become a symbol of this transformation, representing an innovative alternative to traditional organisational models. It has not only supported a better work-life balance, but has also opened up new opportunities for those who have historically faced greater barriers in accessing employment, particularly persons with disabilities. While it is not without drawbacks, remote working has provided a concrete means of overcoming mobility-related barriers and accessing job opportunities on a more equal footing, encouraging active participation in the workplace. This blog post reflects on recent Italian case law, which has begun to conceive of remote working as a typical form of reasonable accommodation. In doing so, the blog aims to offer some reflections that may spur a debate on strengths and pitfalls of remote working in other jurisdictions.

As established internationally by Article 2 of the UN Convention on the Rights of Persons with Disabilities (2006) (CRPD) and, at European level, by Article 5 of Directive 2000/78/EC, reasonable accommodation encompasses all modifications – whether to the environment or to job duties – that allow a person with a disability to work under conditions of equal opportunity. In this context, telework, smart working and remote working can be seen as appropriate and effective solutions, provided they are tailored to the specific needs of the individual worker.

The Italian Court of Cassation, in its recent judgment no. 605 of 10 January 2025, expressly recognised that remote working can indeed constitute a form of reasonable accommodation. As a result, the employer is obliged to provide it, unless they prove that such arrangement would impose an excessive or disproportionate burden on them.

The case in question concerned a worker with severe visual impairment who had requested to perform his duties remotely. The employer refused, arguing that internal company policy excluded remote working for that type of role. The Court of Cassation, after affirming that the principle of identifying reasonable accommodation to ensure equal treatment for persons with disabilities applies in the field of employment protection, considered the employer’s conduct discriminatory. In light of these considerations, the Supreme Court recognised the worker’s right to work remotely, clarifying that reasonable accommodations may be established through mutual agreement and, in cases of dispute, it is for the judge of first instance to determine the most suitable solution to protect the rights of worker with disability.

Therefore, the ruling of the Court of Cassation establishes a fundamental legal principle that may guide future disputes and contribute to strengthening the right of workers with disabilities to fair and non-discriminatory treatment. In fact, including remote working within the broad category of reasonable accommodations has the inherent effect of classifying an employer’s refusal to offer such working arrangements as a form of discrimination.

This Italian case might prove a source of inspiration for other jurisdictions. In Ireland, the employment rate of persons with disabilities is one of the lowest in Western Europe. According to reports from the National Disability Authority (NDA), many are unaware of the existence of the Reasonable Accommodation Fund, which is designed to support businesses in adopting these measures. The report “Reasonable Accommodations: Obstacles and Opportunities” describes a reality where clear internal policies are often lacking, and where concerns about costs or complex procedures discourage the implementation of inclusive measures. Yet, Irish courts had already embraced a broad notion of reasonable accommodation in the significant Nano Nagle School v. Daly (2019) decision. In that decision the Supreme Court recognised that measures such as reduced working hours, job modification, or redistribution of tasks can fall under reasonable accommodation, provided they are compatible with the effective functioning of the organisation. This approach aligns with the views expressed by the Court of Justice of the European Union in HK Danmark and subsequent case law.

At this juncture it is important to appreciate the strengths of remote work, which as EFC Remote Working Report 2021 showed, can enhance flexibility and autonomy for many people with disabilities. Yet this remote working has revealed some critical issues, including social isolation among workers with disability, reduced visibility within the organisation, limited access to assistive technologies, and the lack of adequate facilities for home-based work. Thus, it would be important to implement a working model that alternates between remote and on-site work. For example, through the creation of public and shared co-working spaces designed to encourage social interaction, collaboration among colleagues, and access to appropriate technological tools.

In conclusion, Italy has initiated a significant legal reflection on the role and pitfalls of remote working for persons with disabilities, one that is likely to influence both the European and international legal framework with the view to expanding protection for workers with disabilities.

Giulia standing beside screen where she gave a talk. The talk title shows on the screen 'Reasonable accommodation for workers with disabilities: challenges in digital environment

New Voices, Same Mission: Meet the new Editors joining Ideas in ALL

Research Stream: Editorial & Stories/Lived Experiences

Authors: Rachel McGettrick, Sharon Adedapo & Lauren Kane

Dear readers of Ideas in ALL,

As new editors joining the blog, we are extremely happy to take on this position. As we take up our role, we will strive to maintain the excellent standard and energetic impetus attained by our fellow editors and predecessors. The blog has become an influential academic commentary on contemporary physical, social, political, and conceptual dimensions of society in the twenty-first century.

Each of us wish to add a personal note below on our motivation and commitment to this blog, so that you get to know us better!

Rachel McGettrick

I’m Rachel and I am so excited to join the amazing Ideas in ALL team! I am a PhD researcher who first joined the ALL Institute in 2022 during my undergraduate degree in psychology, working as a research intern with the STEM Passport for Inclusion. This is an initiative led by Professor Katriona O’Sullivan that empowers young women from underrepresented backgrounds to pursue STEM education. This experience sparked my love for research and helped me see a future for myself in such a meaningful environment. Now, as a PhD researcher at Maynooth University, I feel incredibly fortunate to continue my journey within the ALL Institute—a space dedicated to inclusion, accessibility, and meaningful research impact.

Inclusion remains at the heart of everything I do. Alongside my continued work with the STEM Passport for Inclusion, I contribute to two interconnected projects – Pathways and Promote – which aim to foster a more equitable research environment, particularly for women and early-career researchers. These projects reflect the ALL Institute’s commitment to tackling systemic inequalities and ensuring that research is shaped by diverse voices. I am also involved with the Maynooth Access Programme (MAP), which encourages under-represented groups to enter third level and provides these groups with support through their time at Maynooth. As I embark on my PhD journey under Professor O’Sullivan’s supervision, I am exploring the impact of parental alcohol misuse (PAM) on children in Ireland. This research seeks to highlight an often-overlooked issue and develop an intervention to support these vulnerable children – in line with the ALL Institute’s broader mission, contribute to evidence-based policies and person-centred support systems.

Sharon Adedapo

I am delighted to join Ideas in ALL as part of the team! I recently joined the PatentsInHumans project as a Research Assistant, working under Professor Aisling McMahon at the ALL Institute. I completed my Undergraduate degree in Law and Business from Maynooth University in 2023 and recently completed my Master of Law (LLM) in 2024.

The PatentsInHumans project bridges the gap between bioethics and patent law, exploring how patents over health-related technologies, such as medicines, medical devices, gene editing techniques, and neurotechnology, interact with fundamental ethical considerations. The ultimate aim of the project is to reimagine European patent decision-making to better integrate bioethical principles.

What drew me to Ideas in ALL is the commitment to inclusive, accessible, and interdisciplinary research. My background in Intellectual property law, human rights, and technology has fuelled my interest in how emerging health technologies are governed, and the ethical challenges they present. I look forward to bringing these perspectives to the blog, helping to share research that sparks conversation, promotes accessibility, and drives meaningful change.

Lauren Kane

My name is Lauren, and I recently joined the ALL Institute as a Research Assistant on the ERC funded PatentsInHumans project, led by Professor Aisling McMahon. PatentsInHumans aims to explore the bioethical implications of how patents are used over health technologies related to the human body, with a view to reimagining the European patent system to adopt a more person-centred approach.

My interest in this area was sparked by the Myriad Genetics case, which related to an (ultimately successful) challenge to the patenting of genetic mutations which predicted a significantly elevated risk of breast and ovarian cancer (BRCA1 and BRCA2). Essentially, these patents were being used in such a restrictive manner that diagnostic testing could only be provided through Myriad Genetics, and at a significant cost which prevented access for many women. As someone who had personally undergone BRCA testing, this case made me consider how fortunate I had been to obtain access, and how I may have felt and the impact it could have had if this had not been possible. This really opened my eyes to the impact that the manner in which patents related to the human body are used can have over people’s health and motivated my interest in this area of research and social justice. As such, I was delighted to have the opportunity to join the PatentsInHumans team and Ideas in ALL Blog team. The core values of the Ideas in ALL Blog, such as inclusivity, accessibility, respect for diversity and participation really resonate with me. I feel excited to be part of the Ideas in ALL Blog team as I am passionate about accessibility and greatly value the opportunity to contribute to the blog and participate in the dissemination of interdisciplinary research which is accessible to all.

We are all excited to join this team and contribute to the values and mission of the Ideas in ALL blog. All three of us look forward to bringing our different experiences and areas of interest together to foster new collaborations and inspire innovative insights in both this blog and the ALL Institute as a whole. If you are interested in contributing to the Ideas in ALL Blog, please feel free to get in touch via email at ideasinall@mu.ie.

Breaking Barriers: New Tools to Make Culture More Accessible

Research Stream: Social Structures

Authors: Elodie Makhoul & Alessia Palladino, Research Assistants, ERC DANCING, Maynooth University

On Thursday, 13 March 2025, the ERC DANCING Project published two complementary outputs, a Toolkits for Cultural Organisations and a Resource List, both geared at cultural organisations and professionals in the Cultural and Creative Sector (CCS). These outputs aim to support the CCS in advancing cultural participation of people with disabilities, both as audience and professionals.

These outputs contribute to DANCING’s overarching aim of challenging the cultural exclusion often faced by people with disabilities and advancing cultural diversity and inclusivity across the European Union (EU). In particular, the Toolkit and the Resource List aim to raise awareness about barriers faced by persons with disabilities in the cultural domain and to highlight how cultural organisations can ensure inclusion and accessibility and ultimately inspire societal change.

The deployment and publication of this Toolkit and Resource List stem from DANCING’s empirical research and from a close collaboration with persons with disabilities and cultural professionals.

One of the main reasons underpinning the publication of these outputs is the recurring ‘loss’ of good practices. The empirical research undertaken in DANCING showcases that one of the challenges often faced by cultural organisations is that good practices developed remain isolated and often are ‘forgotten’. This happens because good practices are developed within distinct projects and are discontinued at the end of the project, or rely on the distinct expertise of certain employees, artists or cultural workers, and run their course following the exit or retirement of such experts. Further, while there are several good practices across the EU, there is no mutual learning. These outputs aim to address and counter these challenges and to provide guidance and useful information to cultural organisations, with a view to support the creation of a community of practice and the sharing of breakthrough practices.

DANCING Logo

The Toolkit is dedicated to support cultural organisations in their inclusivity journey towards ensuring greater accessibility in cultural spaces and enhancing diversity. The Toolkit provides cultural organisations with key information and recommendations to improve and advance the inclusion and cultural participation of people with disabilities in the CCS both as professionals and as an audience. This Toolkit raises awareness and improves the reader’s understanding of what facilitates cultural participation of people with disabilities and how to foster cultural diversity. It also presents all the preliminary information required to successfully develop an accessible and inclusive disability policy. By prioritising accessibility and inclusion, cultural organisations can reflect the inherent diversity of society, and reimagine the cultural landscape to fully involve people with disabilities both as audience and cultural professionals.

The second output is a non-exhaustive Resource List showcasing existing initiatives improving the cultural participation of people with disabilities as well as the relevant fundings making these efforts possible, both at the EU level and at the local level in all the EU Member States and in the UK. This Resource List developed by DANCING complements the Toolkit. By highlighting relevant projects, initiatives, toolkits, reports and other resources produced by other projects or organisations advancing the cultural participation of people with disabilities, it aims to foster collective learning and knowledge sharing. Further, this Resource List can also support a better understanding of suitable funding streams which could enhance inclusion of people with disabilities in the CCS.

Advancing the cultural participation of people with disabilities requires reaching a large and diverse body of stakeholders, from cultural institutions to organisations of persons with disabilities and from policymakers to civil society. Hence, DANCING has developed tailored tools and resources designed to meet the specific needs of various stakeholders who have the potential to contribute to greater inclusion. By customising tools and strategies for each of these stakeholders, DANCING hopes to support the development of meaningful change that is both practical and impactful. The Toolkit for Cultural Organisations and the Resource List are developed within DANCING’s objective of creating ‘Tools for Change’. While DANCING – as an ERC funded project – has primarily a scholarly focus, it has also developed tools addressed to a wider audience. This approach aligns with research findings that highlight the importance of raising awareness of academic blue-sky scholarship (Linden, 2008) and of ‘democratising’ academic advancements. This approach also aligns with the ethos of the UN Convention on the Rights of Persons with Disabilities and ensures that people with disabilities can reap the benefits of cutting-edge research.

On the whole, these ‘Tools for Change’ developed by DANCING advance the dissemination and enhance the impact of the project, reaching specific stakeholders and ultimately improving the right to cultural participation for people with disabilities.

An undergraduate’s perspective of experience working in academia: ‘SPUR-ring on’ Mental Health

Research Stream: Lived Experience

Author: Isolina Busto Gilligan, BA International Psychology Student, Summer Programme for Undergraduate Research (SPUR) 2024 Intern, Department of Psychology, Maynooth University

This summer I participated in the Summer Programme for Undergraduate Research (SPUR) in Maynooth University. SPUR is an opportunity for undergraduate students to experience what it’s like to work and research in an academic setting. It takes place over six weeks and students work under the guidance of a researcher in the University while also completing a workbook to further hone their research and professional skills. My SPUR mentor was Dr Sadhbh Byrne of the Psychology Department. The project I worked on with Sadhbh was called PRISM (PRovision of Informal Support for Mental Health). This project, in collaboration with Mental Health Ireland and funded by Research Ireland is investigating the support given by young people to friends who are going through a tough time. The project was co-designed with an advisory group of young people aged 18-25 with lived experience of providing support to a friend. The project aims to discover the type of support given to friends, the experience of giving this support, and whether supporters perceive any need for support or resources.

Little research has been done on the type of support given by young people to their friends, and their experience with providing the support, so I was very excited to be a part of this project and to help increase knowledge of this important subject and to extend the body of research that is available. I was also excited to be a part of this project because of the co-design aspect, meaning that everything in the project (from the wording of the questions, to the way it was advertised to the public) was designed and decided on by young people with actual lived experience of supporting a friend going through a tough time, making the project more accurate and relevant to the young people it was researching.

My main role in the project was to investigate research dissemination strategies and to look for effective ways of disseminating findings to a young audience. Dissemination involves communicating research findings to target audiences. We wanted the results of the project to reach its main target audience (young people ages 18-25), rather than only reaching academics and experts in the field of mental health (people who mainly read and have access to academic journals). We wanted others to be interested in the results of the project and for the research to have an impact on young people in particular. To reach this goal, I started by doing a literature review on youth dissemination strategies and searched for dissemination case studies. These case studies will be used as examples and ideas, both good and bad, to guide the development of the dissemination strategy the PRISM project will use. I also investigated important considerations for dissemination, and identified relevant frameworks as well as facilitators and barriers to effective dissemination. I then presented my findings to the research team and received feedback and support on my work. Lastly, when I had finished my research, I developed co-design workshop materials based off my findings to be used in a workshop with the advisory group so they can decide on the best dissemination strategy for the PRISM project findings. I also got the unique opportunity to visit Mental Health Ireland’s head office and learn about the work they do there, which was very interesting and a nice change of pace.

As well as working on dissemination strategies and the literature review, I assisted with participant recruitment. Participant recruitment is a vital part of research, but few people get to learn how it works before doing it themselves in their own projects. I now have a clearer idea of the amount of work involved in participant recruitment, which is something people might overlook when planning a research project to begin with. I also learned about other aspects of research such as ethics and funding thanks to my mentor Sadhbh who explained these to me and gave me guidance throughout the project. I feel I improved not just my research skills, but also my professional skills and my ability to work as part of a team and build professional relationships, which is something that is important in any job. I enjoyed this experience and the opportunity to do something different. I enjoyed working on the co-design materials and presenting my findings after doing all the work and putting in so much effort. My findings were presented in a research poster in the SPUR symposium which took place in October. I especially enjoyed creating and designing the poster as I got to use my own creative flair while also putting my research findings to the test by using some of the effective dissemination strategies that I had found.

This internship not only helped me to improve on my professional and research skills but also gave me a great insight into academia and the ins and outs of running a research project. I gained a great understanding through this work and had the rare opportunity (for undergraduates) to peek behind the curtain of what lecturers and tutors do day-to-day when they’re not teaching us students!

Endometriosis – A Hidden Disability

Author: Cassandra Murphy – PhD Researcher in the Department of Psychology and IdeasInALL editor.

Research Stream: Lived Experience

Yellow Ribbon on grey background with text stating March is Endometriosis Awareness Month

March is a month for shining a light on women’s health For many, this is a time of activism, and a time to push forward the basic needs of those in chronic pain. March is Endometriosis Awareness Month.

Endometriosis is a chronic condition that statistically affects 1 in 10 individuals with female reproductive organs worldwide. This condition often involves debilitating pain for those who suffer, leaving them missing out on school, work and social activity. To put this condition into context, 1 in 10 people worldwide are diagnosed with diabetes. Now, consider the fact that endometriosis only affects half of the population, that figure is striking. More striking again is the fact that in Australia, a country well known in the endometriosis community for its pioneering research and proactive attitude to endometriosis, it is believed this figure is actually 1 in 7. Why might this figure be so different across countries? The answer is because of ‘access to diagnosis’.

On average it is believed to take up to 11 years to get a diagnosis in Ireland for endometriosis. This is not an Ireland-only issue – this is a worldwide delay. One of the reasons behind this is the fact that the symptoms can be quite similar to other conditions. As per the Endometriosis Association of Ireland’s website, the common symptoms are: Painful Menstruation, Pelvic Pain (that radiates down the legs or up the back), Painful Intercourse, Bowel Problems, Fatigue, Premenstrual Syndrome, Abnormal Menstrual Bleeding, Painful Urination and Infertility. However, these are only the common symptoms. This is quite an individualistic and full body disease which has even been linked to immune-dysfunction.

Endometriosis is characterised by endometrial-like cells (similar to the cells that make up the lining of the uterus/womb) growing in other parts of the body. These cells can cause inflammation, leading to the extreme levels of pain individuals suffer. Up until 2022, it was believed that endometriosis has the potential to be found on any organ, except for the spleen. While most common in or around the reproductive organs (ovaries, uterus, rectum, bladder) it has been found as far away as the brain. However during the laparoscopic surgery of a young woman, and in the subsequent pathology report, endometriosis was discovered in a splenic cyst. Based on the location of the cells the symptoms may not be in the GPs list of ‘typical’ symptoms to look out for. Symptoms include brain fog, nerve pain, shortness of breath, lymph node swelling (similar to lymphoedema), shortness of breath and even mental health conditions to name a few. It is no shock that doctors are struggling to identify it in consultations, as they may be looking for the wrong thing. However, even when patients identify with text-book symptoms, they are getting dismissed as it is “just a bad period pain,” but clearly, it is so much more than that.

If you find yourself asking “if the pain is that bad, why is it not classified as a disability?” you are not alone! It is shown that up to 88% of individuals report a disruption to some element of their life (social, academic or work), leading them to miss out on daily activities due to symptoms of endometriosis. This is a conversation that was raised for the Oireachtas in 2021 by Deputy Clair Kerrane, and again just last month by Deputy Marie Sherlock. The issue is that a diagnosis of endometriosis does not automatically mean that your life is interrupted or that it interferes with your daily activities. For many, the endometrial-like cells can lay dormant and do not interfere with life until the individual is trying to conceive. Anywhere between 25% and 50% of infertility cases involve endometriosis. For many of those people, they do not find out until tests are run to screen for infertility. However, consideration needs to be taken for those who are suffering daily, misdiagnosed with Irritable Bowel Syndrome, Fibromyalgia or ‘painful periods’, and spend 11 years or more being told that the pain is in their head.

Maynooth University at large is at the forefront of research on the topic, with researchers in different Schools and Departments engaging with how best support of people experiencing this chronic illness. Research on endometriosis also speaks to the ALL Institute ethos and aligns closely with the mission of the ALL Institute where we are dedicated to interdisciplinary research that improves the lived experiences of individuals with disabilities and chronic illnesses, advocating for policies and innovations that enhance accessibility and quality of life.

Currently, endometriosis does not have a known cause or a cure. However, there is now a large body of passionate individuals who are working to explore a cure, or at least some urgently needed relief measures, for endometriosis. This March, talk to your loved ones about endometriosis. Endometriosis UK shared that “33% of women do not know what endometriosis is and 45% cannot name any of its symptoms and 74% of men do not know what endometriosis is.” Now that you have read this blog, you can change that. Support those with ‘painful periods’ and let us stop normalising women’s pain.

GoGreen Routes in Burgas: Nature-Based Solutions for a Healthier City

Research Stream: Social Lives

Author: Tom Hall, Research Assistant, Go Green Routes Project, Maynooth University

GoGreen Routes

The GoGreen Routes project lead by Principal Investigator Dr. Tadhg McIntyre carried out research in six “Cultivating Cities”: Burgas (Bulgaria), Lahti (Finland), Limerick (Ireland), Tallinn (Estonia), Umeå (Sweden) and Versailles (France). This blog focuses on research undertaken in Burgas (Bulgaria) at “Healing Island” nature-based solutions site in June 2024. Here Tadhg was joined by GoGreen Routes Research Assistant Tom Hall and Project Intern Solène Caron. Assistance was provided by Ivalo Trendilov from the EU Projects Team in the Burgas municipality. The team spent four days collecting observational, interview, environmental and air quality data in order to assess the overall impact that Healing Island is making for the people of Burgas.

The picture shows an overhead view of the park. There is a circular fountain at the center, a raised platform to the left side of this, and a wooden walkway on the right.

GoGreen Routes Aims

GoGreen Routes is a large-scale multinational project which aims to enhance the physical and mental well-being of urban residents by increasing their connection to nature in an inclusive way. To achieve this aim, the project has implemented a collection of nature based solutions (NbS). These solutions center around the use of green corridors, linear parks, pocket parks and shared walkways. By maximizing the available public space, people have greater opportunities to move about cities more actively, enjoy their free time and interact with others. Other NbS benefits include: reduced air and noise pollution, improved urban ventilation and providing ecosystem services and habitat to plant and animal species.

Reclaiming Public Space

The creation of NbS such as Healing Island are crucial due to the lack of green spaces in European cities. Research from the European Environmental Agency (EEA) on public accessibility to green infrastructure (allotments, private gardens, parks, street trees, water and wetlands) indicates that there is limited accessible space available. Here it was found that whilst green space makes up on average 42% of the city area in 38 EEA member countries, publicly accessible green space amounts to 3% (on average) of the total city area. This being so, the focus must be on reclaiming public space and maximising the area available.

“Healing Island”

As the site where Healing Island sits had previously been the location of a derelict and abandoned building, Healing Island represents a fine example of how urban locations can be reclaimed as a green space. Healing Island is so-called due to its proximity to three nearby hospitals. As such, the park provides a place where people can relax and recuperate. Shaded seating areas help cool the park and a running fountain built from local volcanic rock adds to the peacefulness of the environment.

The park can be navigated along bright paths made from recycled granite paving stones. A podium in the centre of the park provides a versatile space for health-related activities such as yoga or Tai-Chi, and can also be used as a stage for events. Beyond this, there is a soft wood-chip play area for children, as well as carved wooden animals and bug hotels for insects. A seesaw made from recycled timber along with interactive and musical features dotted around the park add to the variety of activities available. Despite the park being located close to the city centre, there is a diversity of birdlife which can be seen and heard about the park. Among these is a nearby seagull nest and the sounds of various birds including a woodpecker. Taken together, these features make Healing Island stand out as a sustainable nature-based solution which can be used by all to benefit diverse groups in society.

Access to Green Spaces

A key component of the GoGreen Routes research carried out in Burgas was to examine access to Healing Island. The World Health Organisation (WHO) recognises the contribution that access to green areas has on the health and wellbeing of urban residents. It recommends that citizens should have access to public green spaces which measure at least 1/2 football field and is located within 300 metres’ linear distance (around 5 minutes’ walk) from their homes.

The consequences of not achieving this WHO target were examined in a study led by GoGreenRoutes project partner ISGlobal. This research used satellite imagery to assess the impact of green space on mortality in 922 European cities. As part of the study, it was found that 62% of the urban populations have lower green space access than recommended. Consequently, it was estimated that 42,968 annual natural-cause deaths in these cities could be prevented if the WHO standard was brought about.

With this in mind, the GoGreen Routes team recorded the numbers of citizens using Healing Island over three days. Walking interviews with local residents added context to how people use and perceive the park. The data recorded at this time will be compared with similar data recorded a year earlier (before the park was constructed). In the final report on the project, these figures will indicate how successful Healing Island has been in attracting increased footfall.

360 Degree Health Approach

Beyond the number of people using the park, their activities (such as walking, standing, biking etc.) were recorded to allow for physical and psychological health measurements to be assessed. This is part of 360-Health approach taken by the GoGreen Routes project. This approach integrates multiple health domains. It focuses on mental health and well-being, physical activity, nutrition, sleep, cognition and performance, social health, human-nature interaction and sustainability in relation to urban nature. The results of the research in these areas are important as they can indicate the impact of Healing Island on the well-being of residents in a very powerful way.

Provisional Results

Among the provisional results of data collection in Burgas, local residents expressed their happiness at the building of Healing Island, stating that it was a much-needed amenity. Some reflected on the usefulness of the park as a place to relax and spend time with family and friends. Others including local planning professionals, pointed out that there is a future need for more green areas similar to Healing Island in the city of Burgas.

Overall, the GoGreen Routes research in Burgas has demonstrated that infrastructure projects such as Healing Island represent a viable naturebased solution which benefits people as well as nature. This can be achieved by reclaiming public spaces and providing accessible and safe places where all residents’ physical and psychological health and well-being needs can be met.

Funding Acknowledgement: The GoGreenRoutes Project is supported by the European Union’s Horizon 2020 research and innovation programme under grant agreeement No 869764.

Ending ‘Disabling Cities’ through Human-Centred Urban Living: A Closer Look at the ‘15th European Union (EU) Access City Awards Ceremony’

Research Stream: Social Structures

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)

Friday 29^th November 2024 witnessed the announcement of the winning contending cities for the 15^th ‘EU Access City Awards Ceremony’ (Access City Award 2025). With the launch of the EU Access City Awards in 2010 during the first year of the European Disability Strategy 2010-2020, the EU took an initial but important step towards a more accessible future for all, irrespective of age, mobility or disability. The European Commission (hereinafter referred to as the ‘Commission’) in coordination with the European Disability Forum, created the Access City Award to “reward cities that have prioritised accessibility for persons with disabilities”.

The website of the Commission states that the “Access City Award recognises and celebrates a city’s willingness, ability and efforts to become more accessible, in order to:

Guarantee equal access to fundamental rights;
Improve the quality of life of its population and ensure that everybody – regardless of age, mobility or ability – has equal access to all the resources and pleasures cities have to offer”.

The United Nations (UN) Department of Economic and Social Affairs argues that ‘persons living with disabilities are often the poorest and most vulnerable in cities today’. Indeed, while cities in the twenty-first century are experiencing rapid growth as populations shift from rural dwellings to urban areas in search of employment and greater economic prosperity, increased costs of living alongside inaccessible urban planning, transport infrastructure and architecture, render most cities inaccessible and inundated with hazards for persons with disabilities. Furthermore, cities around the world are experiencing rapid gentrification and rising costs of living, therefore increasing the socio-economic disadvantages that are often experienced by persons with disabilities as a vulnerable demographic.

Although remote working and increased employment prospects in the cyber domain have arguably aided developed countries in creating further career opportunities for persons with disabilities, such initiatives are still in their infancy and are largely confined to the most economically developed states. In the contemporary era, cities around the planet are largely representative of the concept of the ‘disabling city’. Inaccessible built environments can contribute to traditional aspects of ableist social, economic and political marginalisation which often leads to the exclusion of persons with disabilities from cultural, public and private life. As such, the rallying cry and core ethos of ‘nothing about us without us’ in civic policy is even more difficult for people with disabilities to achieve when the architectures of modern cities remain hostile, marginalizing, and hazardous to their person.

In conjunction with the challenges posed by ableist architecture in contemporary global cities, ableism often intersects with ageism in city life as urban renewal and regeneration projects can contribute to rising costs and increased gentrification. This threatens the ability of older adults to ‘age in-place’ in an environment where they may have spent their entire lives. In turn, this can result in older adults, including those with disabilities, falling below the poverty line. Rapid technological progress and the exponential growth of high-tech computational industries over the past decades has led to increasing levels of marginalisation and unfamiliarity with changes to urban dwelling among a significant proportion of older adults. On 29^th September 2015, the ‘United Nations Independent Expert on the Enjoyment of all Human Rights by Older Persons’, Rosa Kornfeld-Matte, said:

“We need to re-think our cities. Over 900 million older persons will be living in cities across the world by 2050, but our cities are not fit for this global demographic revolution”.

The Commission provides an overview of the values that underpin the Access City Award, encouraging cities to address these new age challenges, specifically by describing it as a ceremony for, “recognising cities that have worked to become more accessible for their citizens”.It is an EU initiative that:

Recognises efforts by cities to become more accessible
Promotes equal access to urban life for people with disabilities
Allows local authorities to promote and share their best practices

Additionally, commonplace modalities and trajectories of urban development are often decided by economic requirements in the form of accommodating big businesses, heavy goods traffic, tourism, rapid mobility and regular transport for millions of people; profit and business comprise the historic approach that engenders traditional urban development. The Commission provides the following definition of a ‘Smart City’:

“A smart city is a place where traditional networks and services are made more efficient with the use of digital solutions for the benefit of its inhabitants and business”.

As such, while the future of urban development and the advent of the Smart City has brought humanity to the cusp of a new epoch, it is only through inclusivity and an emphasis on a human-centred approach that cities will become fully inclusive of all, irrespective of age or ability. As UN Secretary General, António Guterres, said on World Cities Day on October 31^st 2020:

“When urban communities are engaged in policy and decision making, and empowered with financial resources, the results are more inclusive and durable. Let’s put our communities at the heart of the cities of the future”.

It is therefore imperative that the principle of ‘nothing about us without us’ underpins the future of urban planning and development alongside the creation of Smart Cities and that the UN, EU and international civil society work together to achieve significant consensus on accessible smart cities and build a mutual understanding that the future of urban environments will be wholly inclusive. People with disabilities are entitled to a leading role and an active voice in the design and development of modern, inclusive, accessible and high-tech built environments.

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