Category: Social Structures

PatentsInHumans ERC Project Commences: PatentsInHumans Explores the Bioethical Implications of Patents on Technologies Related to the Human Body

Social Structures

Author: Professor Aisling McMahon, Principal Investigator (PI), PatentsInHumans

Aisling McMahon profile picture
Aisling McMahon

On the 1st November 2022, the PatentsInHumans project based in the School of Law and Criminology and ALL Institute at Maynooth University commenced. PatentsInHumans is large interdisciplinary five-year project funded by a European Research Council (ERC) Starting Grant. This project was one of 8 projects awarded to PIs based in Irish institutions,  under the ERC Starting grant scheme in 2021.  

This ERC funding will be used to build an interdisciplinary project team and will enable us to explore the core project research questions and aims, which span bioethics, science policy, law, and innovation. This team includes our project manager, Sinéad Masterson, and postdoctoral researcher, Opeyemi Kolawole, both of whom recently joined the team, and who will be joined in future by further postdoctoral and PhD researchers. Together, we will work to tackle the central project research question, which focuses on investigating what are the main bioethical implications posed by patents over ‘technologies’ related to the human body, and how are these bioethical issues accounted for, if at all, within European patent decision-making.

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The Impact of the Welfare State on the Working Lives of Disabled Artists: A New Research Project in ALL

Social Structures

Author: Philip Finn, Assisting Living and Learning (ALL) Institute and Post-Doctoral Researcher; recipient of the Irish Research Council Enterprise Partnership Fellowship.

Philip Finn Profile Picture
Philip Finn

Life as an artist is precarious, even more so for disabled artists. First, disabled people face higher risks of poverty, social exclusion, and discrimination in their working lives and in public services. Secondly, for many in the arts sector income is sporadic, producing an insecurity necessitating on interim reliance on welfare payments to get by. This is felt acutely by disabled artists, often accessing crucial welfare payments and supports, who receive lower incomes from artistic employment, funding and grants. My research focuses on the role of welfare state payments and wider supports in facilitating or impeding disabled artists’ working lives.

The right to participate in the cultural life of the community is enshrined in a number of international documents, for example the Universal Declaration of Human Rights (Article 27) and the International Covenant on Economic Social and Cultural Rights (Article 15(1)(a)). In relation to the specific needs of people with disabilities Article 30 of the UN Convention on the Rights of Persons with Disabilities  requires States to ‘enable persons with disabilities to have the opportunity to develop and utilize their creative, artistic and intellectual potential’. The Convention is central to elaborating a human rights model of disability underlining the recognition and participation of persons with disabilities in communal life. It necessitates accessibility as both consumers of culture as well as creators.

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The Disability Employment Package: A concrete step forward in realising the right to work of persons with disabilities?

Social Structures

Authors: Hannah Casey, Léa Urzel, Matthew McKenna, Ideas In ALL Blog Editors

(L to R) Hannah Casey, Léa Urzel and Matthew McKenna

The European Commission (EC) has now unveiled its Disability Employment Package (DEP). This Package forms part of the Commission’s seven step Strategy for the Rights of Persons with Disabilities 2021-2030. The DEP aims to support Member States in their efforts to ensure people with disabilities have fair and equal access to employment. Currently, just 50% of people with disabilities of working age in the EU are employed, though this number has been rising slowly over recent years

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September 7th, the Publication of the ‘European Care Strategy’: A Brief Appraisal of the European Commission’s Strategic Policy Document

Social Structures

Author: Matthew McKenna, PhD Researcher at Maynooth University’s Assisting Living and Learning Institute (ALL), Research Funded through the Science Foundation of Ireland (SFI) Centre for Research Training in Advanced Networks for Sustainable Societies (ADVANCE CRT)

Matthew McKenna Profile Picture
Matthew McKenna

The highly anticipated publication of the European Commission’s (EC) ‘European Care Strategy’ (ECS/strategy) on the 7th of September 2022 has been met with cautious optimism and circumspection. Certainly, there is a unanimous agreement that the arrival of this strategy is a welcome policy development. However, last week’s unveiling of the ECS also underlined how long overdue this development has been, and it represents an initial and elemental step in addressing the long-term systemic deficiencies in the European Union’s (EU) approach to the care of its citizens. If one is to view this radical collective change as a physical journey, then the ECS is arguably representative of a social and legal point of embarkation from a policy sense, and it is certainly not a final destination.

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What we talk about when we talk about Open Cultural data?

Social Structures

Author: Marta Arisi, is part of the University of Trento team working for the reCreating Europe Project focusing on GLAM.

Marta Arisi Profile Picture
Marta Arisi

Open cultural data can be considered an umbrella term referring to anytime data from Cultural Heritage Institutions (“CHIs”) is made available without restrictions, e.g., thanks to open licensing (as the Creative Commons). It often refers to online resources that contain descriptions, metadata, images, etc. Thus, open cultural data is also relevant to the field of digitization of cultural heritage.

“Open” stands for the possibility to access the content freely, and- to re-use it.  While there is not an accepted definition, useful examples may come from the Open Data Charter or the definition of openness proposed by the Open Knowledge Foundation. Some projects even address the context of CHIs, such as OpenGLAM. 

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A Moratorium on the Capacity Act: Delaying Disability Rights

Social Structures

Author: Hannah Casey, ALL Blog Editor and PhD Candidate in the Department of Psychology

Hannah Casey Profile Picture
Hannah Casey

In 2015, the Assisted Decision-Making (Capacity) Act (the Act) was signed into Irish law. This Act aims to ensure that Ireland is legally compliant with Article 12 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD/the Convention). Article 12 states that a person with disabilities has the right to legal capacity on an equal basis with others, and that they are entitled to government assistance to exercise that capacity. Ireland ratified the UNCRPD in 2018, in the belief that the Capacity Act ensured full legal compliance with the Convention. However, as of now, the Capacity Act, while signed into law, has not been fully commenced by the Irish government. This is despite the promise that it would be fully commenced by the end of June 2022.  

This delay has been attributed to several factors by the government. Primarily, there have been a number of amendments made to the Act, collectively known as the Assisted Decision-Making (Capacity) (Amendment) Bill, 2022. These amendments have been introduced in an effort to clarify aspects of the Capacity Act, and address more controversial aspects of it, such as the regulation of the use of restraint, and public hearings. This delay, and indeed the continued delay in commencement over the past seven years, has been cited as necessary to ensure the proper resources are in place, and the legislation correctly laid out. An admirable sentiment, but one which is proving costly to those whom the law will primarily affect. 

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Labyrinths of the United Nations Conference of State Parties: How not to get lost

Social Structures

Author: Iryna Tekuchova, PhD Researcher, Department of Law, Maynooth University

Iryna Tekuchova taking a selfie at the UN COSP 15
Iryna Tekuchova

The health application on my phone notified me that, within the three days that comprised the 15th session of the UN Conference of State Parties to the CRPD (the UN COSP 15), I walked 18 km. And these 18 km, 23687 steps, were made only in the New York UN Headquarters: a 39-floor building located on 17 acres of land, with the General Assembly Hall capable of accommodating 1158 country delegates and hundreds of NGO representatives. So, what is the UN COSP, and what is behind its agenda that turns you into an ‘athlete’?

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SFI ADVANCE CRT: Interdisciplinary Research for a Connected Society that Promotes Independent Living and the Rights of the Individual

Social Structures

Author: Matthew McKenna, PhD Researcher at Maynooth University’s Assisting Living and Learning Institute (ALL) Institute, Research Funded through the Science Foundation of Ireland (SFI) Centre for Research Training in Advanced Networks for Sustainable Societies (ADVANCE CRT)

Matthew McKenna Profile Picture
Matthew McKenna

The Science Foundation of Ireland (SFI) Centre for Research and Training in Advanced Networks for Sustainable Societies (ADVANCE CRT) is a multidisciplinary research project focused on ‘Future Networks and the Internet of Things (IoT) with applications in independent and sustainable living’. ADVANCE CRT aims to fund and train 120 PhD students in four annual cohorts in five partner universities, including Maynooth University, across a multitude of academic disciplines and through engagement and cooperation with industry partners. In the words of the ADVANCE CRT:

‘Our vision is to train the next generation of researchers who will seek solutions to the technical and societal challenges of global hyper-connectivity between large numbers of People and Things’.

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Will you be RADICAL?

 A call to Action for Revision of the Disability Act 2005

Social Structures

Authors: Mac MacLachlan, Delia Ferri, Delma Byrne and Anastasia Campbell – Assisting Living and Learning (ALL) Institute, Maynooth University

Black Background. White font large letters ‘Have your Say’ underneath subheading ‘Be RADICAL’ underneath text reads ‘Revision of the Act on Disability in Ireland through Collaborative Action for new Legislation’, the R, A, D, I, C, A, and L are bolded and underlined.
Be RADICAL: Revision of the Act on Disability in Ireland through Collaborative Action for new Legislation

By asking you to be RADICAL we are asking you to join us in calling for the Revision of the Act on Disability in Ireland through Collaborative Action for new Legislation.

We want to harness both new thinking and dissatisfaction concerning the Disability Act (2005), by constructively focusing on ideas for why and how the Act should and could be improved, now!  

Our aim is to encourage legislators, and particularly the Minister for Disability, Anne Rabbitte, to begin the long-overdue process of legislative reform in disability.  This year revision of the Education for Persons with Special Educational Needs, (EPSEN) Act (2004), was announced. Revision of EPSEN, without revision of its ‘sister Act’, the Disability Act (2005), with which it is closely intertwined, makes little sense.  Furthermore, both of these acts predate the United Nations Convention on the Rights of Persons with Disability (CRPD) which, since our ratification in 2018 (we were the last country in  Europe to ratify it), means that we are now obliged to comply with and deliver on the Convention. 

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“Human rights crisis within a crisis” – Intersectional challenges for persons with disabilities in the war in Ukraine

Social Structures

Author: Rebecca Daniel – PHD Student, Assisting Living and Learning (ALL) Institute, Department of Psychology, Maynooth University

Rebecca Daniel
Rebecca Daniel

The situation of persons with disabilities during the current war in Ukraine has been repeatedly described as a “crisis within a crisis” during the past number of months. This blog post aims to reflect on the multiple forms of discrimination that persons with disabilities face in times of conflict.

Approximately 15% of the worldwide population has a disability. The United Nations Office for the Coordination of Humanitarian Affairs (OCHA) estimated that 13% of people in Ukraine, in need of humanitarian assistance in 2021, had a disability. In situations of war and conflict, these numbers can even increase, since many disabilities are caused or worsened by war (e.g. through war injuries, a lack of health care provisions, or post-traumatic stress disorders). Given this, it can be estimated that the numbers of persons with disabilities directly or indirectly affected by the war in Ukraine are even higher than those estimated above.

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