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!
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)
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 29th September 2015, the ‘United Nations Independent Expert on the Enjoyment of all Human Rights by Older Persons’, Rosa Kornfeld-Matte, said:
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 31st 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.
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.
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.
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.
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.
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).
Author:Delia Ferri, Principal Investigator, Protecting the Right to Culture of Persons with Disabilities and Enhancing Cultural Diversity in EU Law: Exploring New Paths (DANCING)
The Marrakesh Directive, widely commented upon by copyrights scholars, introduces a mandatory exception to the harmonised rights of authors, empowering beneficiaries (i.e. people who are blind, have a visual impairment, people that have a perceptual or reading disability and people who are otherwise unable, due to a physical disability, to hold or manipulate a book or to focus or move their eyes to the extent that would be required for reading) and authorised entities (AEs) to convert a printed work into an accessible format without prior authorisation of the copyright holder. In substance, the Marrakesh Directive allows, without prior authorization of the copyright holder, conversion of existing printed material (books, newspapers, magazines, sheet music, and related illustrations and any other kind of written works, regardless of the media in which they are made available) in accessible formats (e.g. the creation of an audiobook from a printed volume) and the reproduction of accessible format copies (making additional copies of books in Braille). The Regulation, which is complementary to the Directive, provides for a copyright exception allowing for the cross-border exchange between EU Member States and Non-EU Member States who are party to the Marrakesh Treaty of accessible format copies of certain works that are ordinarily protected by copyright.
The EAA and Accessibility of Printed Material
Without engaging in the technicalities of the EAA, which I have commented on generally in an article published in the European Law Review in 2020, for the purpose of this brief blog, it suffices to highlight that it provides for a wide obligation for publishers to address accessibility concerns ex ante and produce accessible e-books. In fact, it has been highlighted that, when it comes to ebooks ‘the EAA is very thorough’ as it ‘takes into account the whole value chain from book production to consumption’. Although the EAA was enacted in 2019 and should have been transposed by the Member States by 2022, accessibility obligations will come into effect from 28 June 2025.
The EAA and the Marrakesh Package
The imminent coming into effect of EAA accessibility obligations has prompted some publishers to suggest that, in fact, the Marrakesh Directive in particular has lost, at least partially, its relevance. The Fédération des Editeurs européens highlights that the EAA is “a game changer in terms of the commercial availability of accessible books” and the enhanced availability of commercially available accessible copies should prompt for a careful approach in terms of disability copyright exceptions which should be reflected in any revision. The Fédération des Editeurs européens suggests that AEs should be able to “focus even more on cooperation with stakeholders, to avoid duplication and conflict with the commercial exploitation” of works, and similar arguments are put forward by the French Publishers Association (SNE). However, as highlighted in the recent “Study to support the evaluation of Directive (EU) 2017/1564 and of Regulation (EU) 2017/1563, which implement into EU law the Marrakesh Treaty to Facilitate Access to Published Works for Persons Who Are Blind, Visually Impaired, or Otherwise Print Disabled”, the EAA and the Marrakesh Package diverge in their material and personal scope and do not clash or overlap. The EAA in fact will improve availability of ‘born-accessible’ works. However, it will only cover one format, that of e-books, and only apply to works published in digital formats after the cut-off date of 28 June 2025. Notably, the EAA has also a different personal scope than the Marrakesh Package. While the EAA covers people with disabilities, meaning that ebooks will need to be accessible to all people with disabilities (not just people with print disabilities). Further, given that the EAA does not apply to micro-enterprises, it substantially exempts small publishing houses from its obligations.
The qualitative research conducted in the DANCING project from the perspective of organisation of persons with disabilities further highlights that the EAA, in spite of its importance to support access of people with disabilities to printed material, neither diminishes nor hampers the relevance of the Marrakesh exception to copyright, which needs to be applied consistently. In particular, qualitative data collected through 10 semi-structured interviews with umbrella disability organisations active at the EU level – designed, deployed and conducted between June 2023 and January 2024[1] – revealed the need to fully and consistently apply the Marrakesh copyright exception and confirmed the importance of the Marrakesh Treaty and of the EU legislation transposing it. A thematic analysis ‘a la’ Braun and Clarke, unveiled that persons with disabilities do see the Marrakesh package as ‘one of the key initiatives from the EU on access to culture for persons with disabilities’ (NGO/OPD_1). One participant further added:
we have heard from certain industry that since now we have the European Accessibility Act that maybe the Marrakesh Treaty is not needed and that is entirely not true… Because I mean even if the Accessibility Act cover ebooks, which are important for access to culture obviously and education, this doesn’t mean that the Marrakesh Treaty is not needed… [by contrast it is essential] to have accessible formats specifically designed for persons with disabilities such as braille, ebooks, DAISY, you know, easy to read books etc. So we see that some industry players are using the Accessibility Act to say, hey now the Marrakesh Treaty is not needed anymore. And that is obviously not true… (NGO/OPD_1)
Another interviewee suggested that
…the [Marrakesh Package] have had a very significant impact and not even fully felt yet …. and I know we have been working a lot with national organisation[s] for blind people… around access to increasing access to alternative formats and … with […] publishers around making books accessible in alternative formats so if you need a digital version that you can listen to with your text to speech that you can get that really easily and quickly. Which is, I think, such a transformation from the past (NGO/OPD_9)
This tallies with the consideration that digital publishing is still relatively underdeveloped and uneven across the EU. Thus, regardless of the different scope of the two acts, the Marrakesh package is also perceived as essential because of existing accessibility shortcomings in the publishing.As one interviewee suggested that ‘[n]ot all the industries are on top of things when it comes to accessibility…’ (NGO/OPD_6). Interviewees also confirmed, in line with previous research, that the Marrakesh Package has stimulated access to, and enhanced availability of, printed material in accessible formats. Such impact is destined to remain even after June 2025.
*This blog post is a short dissemination output of the project entitled ‘Protecting the Right to Culture of Persons with Disabilities and Enhancing Cultural Diversity through European Union Law: Exploring New Paths – DANCING’ which commenced in September 2020 (https://ercdancing.maynoothuniversity.ie/). This project has received funding from the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation programme (Grant Agreement No 864182). It reflects only the author’s views and does not necessarily reflect those of the European Union or the ERC. I am grateful to Dr. Ann Leahy and Ms Eva Krolla for their support in the data collection process and in carrying out the interviews. I also wish to acknowledge with thanks the contributions of interview participants.
[1] The project encompassed a wide set of interviews. This particular dataset comes from 10 interviews with representatives of umbrella non-governmental organisations (NGOs) working on disability issues at the EU level and organisations of people with disabilities (OPDs). For the purpose of this research, OPDs were identified according to the definition proffered by the CRPD Committee in its General Comment No. 7. The CRPD Committee ‘considers that organizations of persons with disabilities should be rooted, committed to and fully respect the principles and rights recognized in the Convention. Ethical approval was obtained by the relevant Maynooth Ethics Committee.
*This blog post is a short dissemination output of the project entitled ‘Protecting the Right to Culture of Persons with Disabilities and Enhancing Cultural Diversity through European Union Law: Exploring New Paths – DANCING’ which commenced in September 2020 (https://ercdancing.maynoothuniversity.ie/). This project has received funding from the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation programme (Grant Agreement No 864182). It reflects only the author’s views and does not necessarily reflect those of the European Union or the ERC. I am grateful to Dr. Ann Leahy and Ms Eva Krolla for their support in the data collection process and in carrying out the interviews. I also wish to acknowledge with thanks the contributions of interview participants.
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)
In October 2021, MedTec Europe released a white paper in collaboration with the European Coordination Committee of the Radiological, Electromedical and Healthcare IT Industry (COCIR) titled, ‘Interoperability Standards in Digital Health: A White Paper from the Medical Technology Industry’. It defines interoperability in digital healthcare as “the ability of different information systems, devices and applications (systems) to access, exchange, integrate and cooperatively use data in a coordinated manner, within and across organisational, regional and national boundaries, to provide timely and seamless portability of information and optimise the health of individuals and populations globally”. It also underscores the fundamental importance of interoperability, stating that, “Lack of interoperability is widely acknowledged to be a critical barrier for the adoption and deployment of digital health technologies and for the digital transformation of healthcare”. To this end, interoperability in digital healthcare represents an indispensable systems component and critical necessity for the provision of modern healthcare in the European Union (EU).
To date however, the digitalisation of healthcare in the EU has encountered a complex web of bureaucratic, social and legal challenges due to a fragmented digital health technology market and poor inter-agency cooperation resulting from insufficient interoperability between structures and stakeholders on a national and international level. This has greatly slowed the pace at which potential benefits of digital technology can be translated into tangible improvements in healthcare and quality of life for people in the EU. The European Commission (hereinafter referred to as the ‘Commission’) has arguably been slow to take decisive measures to enhance cross-sectoral coordination by reforming regulatory frameworks governing digital healthcare technologies. As such, data sharing, procurement and administration of digital technologies in the care environment has been governed by customary national laws of individual EU member states. Discordant legal rules and standards across the EU limit the ability of businesses developing and marketing digital health technologies such as robots and connected devices and services to operate effectively in the single market. Deficits of strategic cross-sectoral interoperability in the digitalisation of healthcare infrastructure and a lack of interagency communication and cooperation has discernibly contributed to the longevity of traditional, non-digital and wardship models of care provision, particularly for vulnerable individuals including older people and persons with disabilities.
Perhaps understandably, the Commission has approached the emergence of digital health technologies with a significant degree of apparent caution. In the absence of measures to promote wide-scale uniformity in procurement and implementation processes for connected devices and services in the care environment, the cohesive integration of these modern capabilities represents a slow and costly challenge for a siloed and fragmented European healthcare sector. In its approach to digital health technology, the Commission has assumed an unhurried and deliberate process of supporting research initiatives funded through programmes such as Horizon 2020 and Horizon Europe. The logical reasoning here is to assess, trial and identify examples of best practice in digitalisation within the care sector through the professional utility and implementation of digital technologies by clinicians and care workers. In this way, a trial-and-error process through practice and research can be established, with the experiences of the carer playing an important role in determining the practical challenges of ensuring effective implementation of digital health technologies in the care environment.
“To date, the uptake of digital solutions for health and care remains slow and varies greatly across Member States and regions. Further action at EU level is crucial to accelerate the meaningful use of digital solutions in public health and healthcare in Europe. In its mid-term review on the implementation of the Digital Single Market (DSM) 2014 – 2019 strategy the Commission set out its intention to take further action in three areas:
citizens’ secure access to their health data, including across borders, enabling citizens to access their health data across the EU;
personalised medicine through shared European data infrastructure, allowing researchers and other professionals to pool resources (data, expertise, computing processing and storage capacities) across the EU;
citizen empowerment with digital tools for user feedback and person-centred care using digital tools to empower people to look after their health, stimulate prevention and enable feedback and interaction between users and healthcare providers” (European Commission, 2018).
In April 2024, the Interoperable Europe Act entered into force in the EU, representing an important step towards the harmonisation of “key” public services as part of the broader Digital Decade strategy. However, extending broader strategic digital interoperability across healthcare systems in the EU arguably requires dedicated and sector-specific legislative overhaul. Interoperable digitalised systems that empower caregiver engagement with stakeholders in policymaking and identification of good practice is necessary to facilitate smooth delivery of high standards in modern care. Digitalised interoperable healthcare systems with seamless transmission of patient health data, alongside appropriately scalable, cost-effective and rapid procurement mechanisms in the implementation of digital technology for effective service provision can maximise the efficiency and expertise of an invaluable care workforce.
Although certain long-anticipated initiatives are underway to harmonise digital healthcare systems in the EU through enhanced interoperability and an easing of some inhibitory regulatory barriers to the smooth functioning of health technology companies in the single market, change is happening at an often-lethargic pace. Unfortunately, this puts an unwelcome delay on the latent potential benefits that could be felt by carers and patients at an individual level given the current state of digitalised technological innovation. Furthermore, carers note that interoperability and scalability challenges often become apparent when trialling digital technologies in the care environment. As such, the involvement of healthcare workers in the creation of policy and best practice for the interoperable digitalisation of the care environment is critically important. Caregiver engagement mechanisms in Commission policymaking and communication with industry represent essential components in the development of digital interoperability frameworks that function smoothly and effectively, delivering versatile person-centred digitalised healthcare at an EU-wide level.
Author: Eva Sophie Krolla, Research Assistant, Protecting the Right to Culture of Persons with Disabilities and Enhancing Cultural Diversity in EU Law: Exploring New Paths (DANCING)
