#Human Rights – Ideas in ALL

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.

We would like to extend our heartfelt thanks and well wishes to our outgoing Editor, Hannah Casey who, since passing her viva, has taken the next step in her career as a Postdoctoral Researcher in DCU. Hannah’s work as an editor and contributor has been both invaluable and instrumental in expanding the profile and remit of the blog.

We also welcome a new member to the Editorial Team, Elodie Makhoul, who is also working as a Research Assistant on the DANCING Project. Elodie has an extensive and international academic background in law, with a particular interest in EU law, human rights, information technology and intersectionality. Elodie is the perfect edition to the blog team.

The diverse disciplinary background of the Editorial Team, alongside a wide range of blogpost contributions from our researchers discussed below, strongly echo the theme of this years’ Winter Symposium:

‘Advancing Perspectives on Wellbeing through Interdisciplinary Research’.

Our Editorial Team is immensely grateful to our network of contributors whose hard work and commitment to the Blog has enabled us to grow, expand and capture the opinions and analyses of individuals who share the core values of the ALL Institute. Our expanding network of authors, bolstered by some committed veteran-contributors, play an indispensable role in identifying the many social, environmental, technological, legal and policy barriers to full participation by all persons in society. Additionally, some of our contributors write through the lens of lived experience of such barriers and are at the forefront of the fight for equality and participation. This is particularly relevant, as the events of the past four years have shown us that technological development is not synonymous with an improvement in human rights or inclusion. Thus, this knowledge lends greater relevance than ever to the topicality and mission of the Blog and reinforces the message that an inclusive society free of social, legal, policy or technological barriers to participation, must be tirelessly fought for.

To this end, we welcome blogposts from a variety of expert contributors who lend their expertise and wealth of knowledge to this years’ symposium. Amongst these blogposts are five fantastic contributions from Alessia Paladino, Elodie Makhoul, Roberta Esposito, Luke McKenna, Rachel McGetrick and Dr Blanca Suarez-Bilbao. Alessia Paladino is a Research Assistant in the ALL Institute working on the DANCING Project and her blogpost focuses on enhancing access to culture for persons with disabilities and supporting their wellbeing. Elodie Makhoul is a Maynooth University alumnus and she offers some very interesting insights into the DANCING Project discussing the important nexus between culture and wellbeing and the role of the EU.

Luke McKenna discusses the critical necessity for increased availability of universally accessible products and emphasises the need for manufacturers to incorporate Universal Design and Design for All concepts in product design and development. This post highlights the ongoing work ALL blog contributors are undertaking to improve the lives of the wider populations.

Rachel McGetrick and Dr Blanca Suarez-Bilbao shine the spotlight on wellbeing in research. They discuss the PROMOTE and PATHWAYS projects. The PROMOTE project is designed to reshape how early-career researchers navigate academic life and provides a digital platform where they can connect, access resources and share opportunities such as funding, publications and networking events. The PATHWAYS project explores why some researchers leave their field while others persist, and it aims to identify the opportunities and challenges that shape their career paths.

Our symposium also includes a note from the Directors of the ALL Institute to mark the end of another successful year of work in advancing the core mission of ALL, enhancing the scholarly output and societal impact of the Institute.

While this symposium covers the work of ALL members, our editors have been reflecting on their own learnings from the past year as a result of their engagement with ALL, hence our theme for this symposium ‘Advancing Perspectives on Wellbeing through Interdisciplinary Research’, a common thread that can be seen from each of our showcased blogs. As members of the editing team, the exposure to the variety of blogposts over the year has shown the overall growth of the ALL Community and the potential for interdisciplinary collaboration. As members of the ALL Institute ourselves, being part of the editorial team for the blog has allowed us to further embody its ethos- striving to ensure that all people across their lives have the support and opportunity to participate fully across the life course. This along with the key goals of the blog– inclusivity, accessibility, respect for diversity, and participation is what drives our team to continue to search for and solicit regular contributions to highlight the diversity of approach and wealth of knowledge within our ALL community. With that in mind, please enjoy the fantastic contributions of each of our symposium writers, and join us once again in saying a big happy birthday to the ALL Blog!

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.

The current prevailing ethos in the design and manufacturing world is still predominantly hostile to the core ideas of universal accessibility. Able-bodied, economically active and generally younger users are primarily considered when designing and manufacturing most modern products such as digital technologies, wearable devices, entertainment systems and so forth. Many private sector companies are reluctant to adopt additional accessibility specifications that they believe will increase the costs of product design, development, testing and manufacturing.

These profit-driven ideologies have not only obstructed the progression of universal accessibility in product design, but have also potentially withheld greater success from the companies themselves – Wouldn’t a company who designs and manufactures universally accessible products have potential to be incredibly successful?

Universally designed products receive increased use and enjoy greater levels of user satisfaction due to their accessible and simplistic nature, future-proof design, and broader appeal. With this in mind, why then would universally designed products be an off-putting concept for manufacturers?

Ronald Lawrence Mace (1942 – 1998) was an American product designer, architect, educator and consultant who coined the term ‘Universal Design’ (UD).

Mace defined it by saying, “Universal design is design that is usable by all people, to the greatest extent possible, without the need for adaptation or specialized design.” After contracting polio as a child, Mace became a lifelong wheelchair user. As a person with a disability, Mace used his passion for architecture and product design alongside his tireless advocacy to push for legislative change in his native North Carolina, USA, and establish the first legal standards for accessible buildings and houses. He established the Center for Universal Design (hereinafter referred to as the ‘Center’), at the School of Design at North Carolina State University where we worked as a research professor.

The Center was said to be “a leading national and international resource for research and information on universal design in housing, products, and the built environment.”

As of now, the Center is not currently active due to lack of federal funding – this, unfortunately, is evidence of persistent disregard of UD in modern times.

Mace’s hard work and advocacy on UD eventually contributed to an international definition of the concept being enshrined within the United Nations Convention on the Rights of Persons with Disabilities (Convention), Article 2 on ‘Definitions’: “Universal design” means the design of products, environments, programmes and services to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design. “Universal design” shall not exclude assistive devices for particular groups of persons with disabilities where this is needed.

The European Commission’s Strategy for the Rights of Persons with Disabilities 2021 – 2030 advocates “mainstreaming the Universal Design approach for better accessibility and provision of reasonable accommodation for persons with disabilities into all actions.” This builds upon the Commission’s emphasis on promoting the ‘Design for All’ (DFA) approach to product design so that manufacturers will “design, develop and provide products, goods and services so that they can be accessed, understood and used by the widest range of users, including persons with disabilities”.

To make enabling and accessible products, it is a designer’s duty to alter traditional approaches to design methods that are disabling for older people and persons with disabilities. With a UD and DFA-oriented design process, not only would new production lines and systems be invented, but products already manufactured at scale would have necessary solutions applied to them, saving manufacturers from entirely new production requirements, and therefore costs.

There is no denying that this throws up some practical challenges for product designers.

However, with extensive research in service design, modern technologies, 3D CAD software, AI and a holistic DFA ethos, it is not only practical, but economical to provide a globalised society with a ubiquitous and comprehensive standard of UD for accessible products, devices, and services.

Abiding by UD also ‘future-proofs’ products and services as they can be designed to accommodate diversifying populations (ageing, disability and multicultural groups), evolving regulations (accessibility laws and guidelines), sustainability (adaptable, long-lasting materials and robust designs) and lifelong usability of products for people irrespective of their age and ability.

By generating the necessary political will and social advocacy, like Ronald Lawrence Mace, it is possible to develop new policies and legal standards for UD and DFA measures in product designs and related services, and set new high quality universal accessibility standards for the manufacturing industry at large.

At the start, I said that the purpose of a product designer is to identify a problem and provide a solution. The problem has been identified; it is now time for us to solve it. Striving for inclusivity, accessibility, usability, and for the good of all. The time for change in design has come. The future is not set. There is no fate but what we make for ourselves.

Luke McKenna smiling with curly hair and wearing a black hoodie — Luke McKenna

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.

In 2019, one in eight people worldwide lived with a mental health condition, mainly anxiety and depression ─ a statistic that has only worsened due to the high level of stress experienced by people across the globe during this time of crisis because of the COVID-19 pandemic, economic instability, ongoing conflicts, digitalisation, and climate change. The perception of mental health as a concern has increased significantly since the pandemic began. In the European Union (EU), even before the COVID-19 pandemic, one in six people suffered from mental health conditions. As of today, this situation has deteriorated, particularly among vulnerable groups. The 29 Country Health Profiles, covering all EU Member States, plus Iceland and Norway, show an uneven distribution of mental health problems. In fact, women (not least in their role as informal carers), population groups with lower socioeconomic status and education levels, and people suffering from chronic conditions are at higher risk of developing mental health problems.

Usually, when I present or discuss my research, I start by asking what comes to mind when thinking about “mental health”. In fact, reading books, newspapers, watching TV or listening to podcasts, we generally think about “mental health” in a meaning similar to the definition drafted by the World Health Organization (WHO) in 2001, according to which mental health is “[a] state of well-being in which the individual realizes his or her own abilities, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to his or her community”. Yet, the concept of mental health has historically and specifically been intended to concern (and protect) individuals with mental illnesses. Despite growing awareness, the response to mental health needs by governments across the globe has largely focused on the treatment of the ill rather than the prevention of the illness.

Roberta Esposito with short brown hair and wearing a blue shirt

The idea of mental health as a human right “for everyone” is enshrined, more or less explicitly, in international and regional human rights systems (and related legal frameworks), though it has evidently not been fully achieved. An international human rights system with universal application has been developed under the auspices of the United Nations. The Universal Declaration of Human Rights (UDHR) (1948) lays the groundwork for the right to health and well-being in Article 25(1), which guarantees an adequate standard of living for health and well-being. While the UDHR itself is not legally binding, it has heavily influenced subsequent international and regional treaties, as well as national constitutions (among others, Schabas, 2021; Hannum, 1996). More directly relevant are
the WHO Constitution (1946), which states in its Preamble that “[h]ealth is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity” and the International Covenant on Economic, Social and Cultural Rights (ICESCR) (1966), which is binding on its state parties and explicitly requires the recognition and full realisation of “the right of everyone to the enjoyment of the highest attainable standard of physical and mental health” under Article 12.
The EU Member States are parties to both treaties.

Though the European integration began with predominately economic focus, human rights became increasingly important from the late 1960s onward (Wouters and Ovadek, 2021). Thus, here we consider the EU as one of the human rights regional systems in Europe (geographically speaking), and therefore its primary law. This includes the aim to promote the well-being of its peoples (Article 3 of the Treaty on the European Union) (TEU) (Lisbon Treaty, 2007), as well as the social clause to act taking into account the protection of human health (Article 9 of the Treaty on the Functioning of the European Union (TFEU) (Lisbon Treaty, 2007). Hence, the TFEU provides the EU with a dual nature of competences in health: Article 4(2)(k) grants the EU shared competences in addressing “common safety concerns in public health matters”; while Article 6(a) provides it with supplementary competences in the “protection and improvement of human health”. That twofold aspect of EU competences is mirrored in the words of Article 168(1) TFEU, which specifies that a “high level of human health protection shall be ensured in the definition and implementation of all Union policies and activities”, allowing the EU to adopt different types of measures depending on the specific health issue at hand. More precisely, Article 168(1) also mandates the EU to complement national policies in preventing mental illnesses and eliminating dangers to mental health. Additionally, this legal setting includes the Charter of Fundamental Rights of the European Union (CFREU) (2000), which states in Article 3(1) “[e]veryone has the right to respect for his or her physical and mental integrity” and in Article 35 recognises “the right of access to preventive health care and the right to benefit from medical treatment under the conditions established by national laws and practices” for everyone.

Focusing on EU action, most of the EU competences in health are complementary to those of the Member States, and the primary legal basis for adopting health laws and policies is Article 168 of the TFEU. However, other articles have also been used to enact legislation that impact on, or regulate, certain aspects of health, such as Article 114 (internal market), Article 153 (social policy), and Articles 122 and 222 (solidarity), etc. Responsibility for healthcare is in the hands of Member States, as outlined in Article 168(7). As a result, the EU enhances national policies, encourages collaboration between Member States, and facilitates the exchange of best practices and knowledge. Among the most significant recent EU initiatives on mental health, the Communication on a comprehensive approach to mental health (2023) adopted by the former European Commission (EC) is noteworthy.

The inability of our current national mental health systems in the EU to address and meet the increased needs of the population is clear. According to a Eurobarometer survey on mental health (2023), one in two respondents across the EU declared to have experienced an emotional or psychosocial problem in the previous year; more than half of the respondents experiencing a mental health issue declared lack of help from a professional. What emerged demonstrates that, due to various factors, including the EU’s imperfect competences on the matter, limited harmonisation across the EU-27, and the variability in the implementation of mental health policies among them, more and urgent actions are needed to put mental health first throughout the EU.

The re-elected EC President von der Leyen, in her Political Guidelines 2024-2029, presented to the European Parliament on the day of her election, has cited mental health and well-being in four key points: she underlined the urgent need to “step up our work on preventive health, in particular for mental health” to tackle what she has called “the greatest challenge in this decade”, placed a focus on the mental health of children and youth, proposed initiatives to study the impacts of social media on well-being, and promised a new “Action Plan on the Implementation of the European Pillar of Social Rights” which considers the impact of an “‘always on’ culture on people’s mental health”. Based on these Guidelines, the President, together with the new Commissioners, has defined the priorities of the new EC for 2024-2029, setting a “unique” European social model aimed at delivering “wellbeing for everyone”.

The High Commissioner for Human Rights, Volker Türk, recently and aptly stated: “[i]nvesting in mental health is a human rights imperative that makes social and economic sense” as an enabler for sustainable investments (and development) that will be repaid many times over. Given the lesson learned from the COVID-19 pandemic (among others, McKee and de Ruijter, 2023; Alemanno, 2020) and the global call to action on mental health, the EU has a timely opportunity to lead by example as a global actor, translating words and ambitions into tangible and effective actions to treat mental health as the right it is, not merely as a political tool, seizing (and not missing) the chance to guide the Elephant out of the Room.

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.

While the definition of wellbeing is frequently debated, wellbeing is most often associated with health, both mental and physical, however, wellbeing can also manifest in various other ways. Indeed, Eurofound describes subjective wellbeing as how people perceive the quality of their lives, and overall happiness, pointing to an emotional assessment of how individuals might feel. Another vision of wellbeing could be assimilated to encompass social inclusion and cohesion. Over the past few years, a great amount of research has emerged, linking the impact of cultural life on wellbeing and the way in which engaging in cultural activities could lead to achieving a healthier life. The research argues that culture can positively impact various aspects such as physical health and mental health; social inclusion; subjective wellbeing; and even contribute to engaged, resilient communities.

According to a World Health Organisation Report, participating in culture such as arts-based activities can involve different types of engagement mechanisms that facilitate health and wellbeing outcomes. For example, the studies led by Culture for Health demonstrate that many different health-benefits can come out of cultural activities, such as:

music and singing, which would help alleviate stress and anxiety, and promote social engagement and connection;

dancing, which can foster social engagement and physical activity;

photography and film, good for stress-reduction and self-expression;

or even visiting heritage sites and museums which can play an important role for social inclusion and general knowledge.

Culture has the potential to be a great motor in building social cohesion, developing new means of communication and empowering people. Furthermore, while participating in culture can benefit the general public, cultural involvement, such as arts-based activities might actually be even more helpful for individuals with various physical or mental conditions. For example, a report by the What Words Centre for Wellbeing that focused on arts projects for people with clinically diagnosed mental health issues found that, ‘projects based on engaging with visual arts in non-clinical settings show that such engagement can be liberating, and transformative – in “normalising” ways – for participants’. The research was found to help reduce social isolation and improve confidence. Indeed, a huge aspect of human wellbeing lies in experiencing a sense of belonging by engaging in social spaces which encourages collaboration through art-based activities.

Article 6 of the Treaty on the Functioning of the EU states that the Union only has supporting competence in the area of culture (and also in relation to health), however, it incorporates several initiatives to promote wellbeing, notably through culture. Indeed, €95.5 billion between 2021-2027 have been mobilised for EU funded Horizon Europe projects, some of which aim to stimulate innovation and the use of new technology but within the creative and cultural industries such as the New European Bauhaus, which is discussed in this symposium by Alessia Palladino. The EU has also placed a focus on access to culture for persons with disabilities, which is emerging as a distinct theme of cultural policy. As noted by Ferri and Subic in an article published back in 2022, this links to different objectives, one of them being ‘social inclusion’, and even more broadly, ‘wellbeing for all’. In that regard, the DANCING project which investigates the intersection of cultural participation of persons with disabilities and cultural diversity in the EU, recognises that upholding the right to participate in cultural life of persons with disabilities contributes to wellbeing of all and to better social cohesion. While this multifaceted and multilayered project has a distinct focus, it provides important findings such as that supporting the right to equal access to culture for people with disabilities, may further contribute to broader research on the role of culture in ensuring wellbeing for all in society.

DANCING Logo

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).

The NEB is an initiative introduced by the Commission in 2021 with the goal of fostering sustainable solutions to transform the built environment of the European Union (EU). It aims to create a new design that represents the paradigm shift required by the European Green Deal (EGD), which entails a set of policies and investments to make the EU carbon neutral by 2050. The NEB is a multifaceted tool and is informed by three core values: aesthetic, sustainability and inclusion. This blog, written within the remit of the DANCING project, argues that the NEB, in pursuing inclusion at large, can play an important role in enhancing access to culture for people with disabilities.

DANCING Logo

The right to participation in culture for persons with disabilities is explicitly provided in Article 30 of the Convention on the Rights of Persons with Disabilities (CRPD). This provision, which is at the core of the DANCING project, highlights the importance of access to culture and the role of people with disabilities in enriching culture and society. If read in conjunction with the principle of participation as well as with the other key rights elucidated in the CRPD, it is clear that access to culture empowers persons with disabilities and allows them to fully participate in community life. In that regard, cultural participation can also be seen as key to wellbeing, as sustained in the DANCING project.

Author: Alessia Paladino

When looking at access to culture, accessibility of the built environment is vital. Article 30 itself mentions the obligation of State parties to ensure “access to places for cultural performances or services such as theatres, museums, cinemas, libraries and tourism services, and, as far as possible […] access to monuments and sites of national cultural importance”. In that regard, it is argued that the new design of the NEB, as made explicit in the NEB’s tools and resources, can support the implementation of this obligation (and of the CRPD broadly).

The NEB is in fact consistent with the overall ethos of the CRPD in relation to participation of persons with disabilities in all decision-making process affecting them, in that it went through and also requires for future NEB initiatives a co-creation phase, in which different civil society representatives engage and manifest their needs. The NEB also embeds a Design for All approach, i.e. a specific type of design that grants buildings and objects to be usable by everyone to the greatest extent possible.

Besides a general approach that is consistent with the CRPD, the NEB focuses on the renovation of cultural buildings. The NEB’s tools and resources highlights that cultural buildings like museums, theatres, libraries and cultural centres are vital to enhance community engagement. Further, cultural buildings also have a relevant influence on the perception of the overall built environment, hence they can have an effect on how the remaining built environment will be designed. In fact, cultural buildings are often a landmark of a specific area, and they can have a deep cultural meaning for the local community. Hence, implementing the NEB can not only support renovation initiatives that grant everyone physical access to culture, but can also have a butterfly effect and influence other players to engage with inclusive and accessible building processes.

Finally, the link between culture and circular practices, makes accessibility strictly intertwined with another core value of the NEB, i.e. sustainability. A building that is suitable for a higher number of people is less likely to undergo other adjustments in the future, thus becoming more sustainable.

Being an initiative that started in 2021, the NEB has encompassed some projects that have been fully completed. Among these, there is the Multi-sensory Museum, a project that, in line with the NEB, bridges art and technology to achieve sustainability, beauty and social inclusion. This project brought together designers and people with disabilities to create a space that “draws the museum visitor in through all the senses” to express inclusion through architecture and provide a new way to experience a museum visit that is accessible to all. This project well-epitomises the importance of this EU initiative to enhance access to culture for persons with disabilities.

On the whole, the NEB has already played and could play a powerful role in enhancing access to culture for people with disabilities. It remains to be seen whether the new Commissioners will be able to leverage on the results that the NEB has achieved so far and further develop this initiative, which has a great potential to boost inclusion and well being of persons with disabilities.

The European Accessibility Act and the EU ‘Marrakesh Package’: Will We Still Need the Marrakesh Directive and Regulation in June 2025?*

Research Stream: Social Structures

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 adoption of the Marrakesh Treaty to Facilitate Access to Published Works for Persons Who Are Blind, Visually Impaired, or Otherwise Print Disabled (Marrakesh Treaty) by the World Intellectual Property Organisation (WIPO) on 27 June 2013 has been heralded as historic and groundbreaking by scholars, policy makers and disability activists alike. In fact, the Marrakesh Treaty is the first treaty entirely based on exceptions to copyright, and the first WIPO treaty to address the rights of persons with print disabilities to access cultural material.

In a nutshell, the Marrakesh Treaty requires Parties to enact a copyright exception in their national legislation to facilitate the availability of works in accessible format copies for the benefit of blind persons, visually impaired people, persons with a perceptual or reading disability and those who are ‘otherwise unable, through physical disability, to hold or manipulate a book or to focus or move the eyes to the extent that would be normally acceptable for reading; that cannot access effectively printed material’. Enthusiasm has also surrounded the EU ratification of the Marrakesh Treaty and the ensuing adoption of the so-called ‘Marrakesh Package’, which is comprised of Directive (EU) 2017/1564 and of Regulation (EU) 2017/1563. However, approximately seven years after the adoption of the Marrakesh package, its usefulness and timeliness has been called into question. Alongside its inherent limitations, already commented upon in previous articles, the coming to effect (in June 2025) of accessibility requirements provided for in the Directive (EU) 2019/882 on the accessibility requirements for products and services, better known as European Accessibility Act (EAA), has raised doubts as to whether the Marrakesh Package has still a role to play in supporting access to printed material for persons with disabilities. This blog post briefly highlights, on foot of previous research and qualitative interviews conducted within the remit of the project DANCING, funded by the European Research Council, why the EAA and the Marrakesh Package need to be seen as complementary, and pieces of what I have elsewhere called the ‘accessibility jigsaw’.

Professor Delia Ferri smiling and wearing black

The ‘Marrakesh Package’ in a Nutshell

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.

Achieving Interoperability in Digitalised Healthcare in the European Union

Research Stream: Social Technologies

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.

The digital healthcare technology industry in the EU is splintered and disorganised, even within the context of the single market. The following Commission Communication document from April 2018 titled ‘Communication from the Commission to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions on Enabling the Digital Transformation of Health and Care in the Digital Single Market; Empowering Citizens and Building a Healthier Society’, announced the following strategic initiatives:

“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).

To this end, in 2022, the Commission put forward a proposal for a regulatory framework for the sharing of health data within the EU called the ‘European Health Data Space’ (EHDS) (European Union, 2022). According to the Commission, it will function as “a common EU data space for health data that empowers individuals and fosters a single market for electronic health records”. Further to this, “in 2024, the European Parliament and Council reached a political agreement on the Commission Proposal for the EHDS”. The EHDS is an important pillar in the construction of the European Health Union which aims to create a more unified, harmonised and effective healthcare system throughout the EU and to ensure the availability of medical supplies. These measures also address significant aspects of the three areas outlined above in the 2018 Commission Communication on the Digital Transformation of Health and Care.

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.

At Their Fingertips: The First International Day of Intangible Cultural Heritage

Research Stream: Social Lives

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)

On 17^th October 2003, exactly 21 years ago, the General Conference of the United Nations Educational, Scientific and Cultural Organization (UNESCO) adopted the Convention for the Safeguarding of the Intangible Cultural Heritage (hereinafter: the 2003 Convention). The 2003 Convention represents a milestone in recognising immaterial cultural heritage and complements UNESCO’s efforts under the Convention Concerning the Protection of World Cultural and Natural Heritage of 1972 with its well-known World Heritage List. In honour of this, the General Conference of UNESCO declared 17 October the ‘International Day of Intangible Cultural Heritage’ at its 20^th anniversary in 2023, which will be celebrated for the first time this year. To date, 183 States Parties have acceded to the 2003 Convention including all 27 European Union (EU) Member States, with Malta being the last one to ratify it in 2017.

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