All Institute

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.

Modelling Group Label Implicit and Explicit Attitudes with Language Models

Research Stream: Social Technologies

Author: Manokamna Singh, PhD Researcher at Maynooth University’s Department of Psychology, Research Funded through the Science Foundation of Ireland (SFI) Centre for Research Training in Advanced Networks for Sustainable Societies (ADVANCE CRT)

Decision-making is a crucial part of human life. Human beings take decisions and make choices on a daily basis to drive their social life. The decisions made produce an impact on the family and shape the future of society. The reasoning behind the decisions can be implicit and explicit attitudes. Implicit attitudes are evaluations that occur without deliberate or unconscious thought. The primary factors which shape the implicit attitudes are past experiences, cultural norms, and social influences. Explicit attitudes are conscious evaluations that everyone can articulate and are aware of holding. This attitude is a reflection of the beliefs and ideals that people consciously support. Unconscious bias is also commonly referred to as implicit bias, as noted by Lopez (2018). The term was first coined in 1995 by Mazarin Banaji and Anthony Greenwald in their article on implicit social cognition. The two psychologists argued that social behavior was significantly affected by unconscious associations and judgments.

Celebrating the Fourth Anniversary of the ‘Ideas in ALL Blog’ in the 2024 Winter Symposium; a Commentary from the Editorial Team

Authors: Matthew McKenna, Cassandra Murphy, Neasa Boyle, Elodie Makhoul and Dr Opeyemi Kolawole

Research Stream: Symposium

The Ideas in ALL Blog celebrated its fourth anniversary at the end of November 2024, marking four momentous years since its inception. The Blog has grown markedly over this timeframe, driven by a dedicated Editorial Team whose ranks are filled by researchers from a diverse variety of fields, reflecting the interdisciplinary ethos of the ALL Institute through a collective emphasis on inclusion, human rights, equality and accessibility. Though the membership of the Editorial Team has slowly changed over time, each participant has made their own invaluable contributions to the growth of the blog and has left an indelible imprint through their work, and in the connections they fostered with dedicated contributors from within, and outside of, the ALL Institute. This helped raise the profile of the ALL Institute by emphasising to the generalist audience the importance of the core values of social inclusion and participation for all persons in a transformational and digitalising society.

Accessible Products for All: Promoting Universal Accessibility in Product Design

Research Stream: Symposium

Author: Luke McKenna, Undergraduate Product Design Student, BSc in Product Design and Innovation, Department of Design Innovation, Maynooth University

I believe there is a very common misconception of what product design really is. It is not so much ‘designing a product’, but rather it is ‘identifying a problem’ and ‘providing a solution’, generally through means of design. This discipline has been around since the birth of mankind, from the first people shaping primitive tools and designing fish traps, to forging armour and eventually making bicycles. Although design techniques and manufacturing methods are the best and most efficient they have ever been, there is a vital problem which has not yet been solved – establishing universal accessibility as a compulsory principle of modern product design.

Caring for the Mind: A Chance for the Renewed EU Institutions to Take the Elephant Out of the Room

Research Stream: Symposium

Author: Roberta Esposito, Doctoral Course in Public, Criminal and International Law, University of Pavia, Recent Visiting PhD Researcher in ALL

On November 27th, Maynooth University (MU) unveiled the “Elephant in the Room” (EIR) sculpture. This initiative highlights the university’s commitment to promoting mental health and well-being, fostering an inclusive, safe, and positive campus culture. It serves as a poignant reminder to the entire academic community and society at large that mental health challenges can affect everyone. I started my professional journey at MU years ago and recently returned to the ALL Institute as a visiting PhD researcher to better structure my research project on the right to mental health. Always feeling, even from afar, part of this warm community, the MU’s initiative has been an occasion for me to reflect on how cumbersome this Elephant truly is.

Culture, Wellbeing and the Role of the EU: Some Reflections from the DANCING Project

Research Stream: Symposium

Author: Elodie Makhoul, Research Assistant, Protecting the Right to Culture of Persons with Disabilities and Enhancing Cultural Diversity in EU Law: Exploring New Paths (DANCING)

On November 14-15, Culture Action Europe, leader of the Culture and Health platform, an initiative funded by the European Union (EU), hosted a two full-day conference to discuss the potential for culture to support and benefit the health and wellbeing of people. This initiative epitomises the importance of culture for well-being and the role that the EU can play in ‘supporting artists working at the intersection of culture, health, and social sectors across Europe’. The platform responds to the recommendations of the CultureForHealth Report (2022), which indicates, inter alia, the need to support the role of culture for well-being and health as well as to map good practices.

The Role of the New European Bauhaus in Enhancing Access to Culture for Persons With Disabilities and Supporting Their Wellbeing

Research Stream: Symposium

Author: Alessia Palladino, Research Assistant, Protecting the Right to Culture of Persons with Disabilities and Enhancing Cultural Diversity in EU Law: Exploring New Paths (DANCING)

In her Mission Letters, the President of the European Commission Ursula von der Leyen has entrusted the Commissioners Raffaele Fitto (Executive Vice-President for Cohesion and Reform), and Jessica Roswall (Commissioner for Environment, Water Resilience and a Competitive Circular Economy) to further develop the New European Bauhaus (NEB).

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