Category: Social Structures

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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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Platforms under control? An expert opinion on the copyright aspects of the Digital Services Act

Social Structures

Author: Péter Mezei, Associate Professor of Law, University of Szeged, Faculty of Law and Political Sciences; adjunct professor (dosentti), University of Turku, Faculty of Law

Péter Mezei Profile Picture
Péter Mezei

Most of the European Union (EU) legislation on platforms was introduced in a period that we currently call “web 1.0”. During the early years of the internet, websites offered “read only” experience, rather than interactivity and user engagement. The early legislative acts in the USA and the EU have contributed to the emergence of brand-new business models. The platformisation – based on the safe harbours granted for (certain) service providers – has generated a brand new (“read/write”) internet culture, something we refer to as “web 2.0”. For a while, social media’s contribution to modern society was hailed as the new democratisation of life, but those sentiments have since then gone, partially due to platforms’ excessive content moderation practices.

Web 2.0 – coupled with rogue websites’ contribution to illegal end-user activities – have sparked criticism on a global scale. It took many years in Europe to come up with the necessary solutions to mitigate the negative consequences of the platform age. One of the magic keywords for these reforms was the so-called “value gap”, that is, the claim that platforms’ benefits from end-users’ activities is disproportionately greater than the fees they pay to rights holders. Furthermore, as data has become the “oil of our age”, an urgent need has arisen to regulate the collection, management and utility of information.

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Judicial Review of Assessment of Need

Social Structures

Author: Mac MacLachlan, Co-Director of the Assisting Living and Learning (ALL) Institute, Professor of Psychology & Social Inclusion, Maynooth University and Clinical Lead for Disability Services, Irish Health Service (HSE)

Professor Mac MacLachlan Profile Picture
Mac MacLachlan

On the 11th March 2022, Justice Siobhan Phelan’s Judicial Review , was released which sought to address the grievances in two particular cases, and to interpret the intensions of the Disability Act (2005) regarding the Assessment of Need (AoN) process. I can make no comment on the particular cases, but I would rather comment on the broader issues touched upon in the decision and on Justice Phelan’s interpretation of the AoN process, while well intentioned and carefully considered, seems to me very problematic. While she refers to a related 2019 report from the ALL Institute on a closely related topic, the judgement will not help us address the challenges, which are certainly not unique to the Irish context.

The Standard Operating Procedure (SOP) for the AoN was introduced to have a standardised and shorter assessment time, allowing for services that assist children and parents to be provided more quickly.  It allowed for assessment continuing as part of routine clinical practice alongside services such as therapy, recognising that assessment is not a one-off event, and that people’s needs change over time.  The SOP also allowed for the situation where, should a preliminary assessment not be sufficient to identify the need for services, then a more detailed assessment would follow. This is a pragmatic approach, to maximise the impact of available resources, as the Health Service Executive (HSE) is compelled to do under section 7 of the Health Act (2004): resources should be used in the “most beneficial, effective and efficient manner”. 

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The European Declaration on Digital Rights and Principles: a proposed Guide for the Digital Transformation

Social Structures

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

Léa Urzel (Left) and Matthew McKenna (Right) profile pictures with a black boarder
Léa Urzel & Matthew McKenna

Last Wednesday, 26 January 2022, the European Commission (the Commission) released a draft Declaration on Digital Rights and Principles for the Digital Decade (the Declaration) for the European Parliament and Council to discuss and eventually endorse. With this initiative, the Commission aims to provide a reference point for all involved in the European Union’s (EU) digital transformation and to guide policy makers as well as private actors working with new technologies.

Last week’s Declaration responds to calls from the Parliament to ensure strong consumer protection and the respect of fundamental rights and principles (e.g. non-discrimination, data protection, net neutrality) in approaching the EU’s digital transformation. It further builds on previous Council initiatives, including the Tallinn Declaration on eGovernment, the Berlin Declaration on Digital Society and Value-Based Digital Government, and the Lisbon Declaration – Digital Democracy with a Purpose. The draft Declaration also follows various Commission initiatives introduced in 2021 such as the Commission’s Communication on the Digital Compass: the European way for the Digital Decade presented last March. It sets out its ‘vision, targets and avenues for a successful digital transformation of Europe in 2030’. In addition, the Commission proposed in September 2021, the Path to the Digital Decade, a governance framework to deliver the Digital Decade’s targets.

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Election to the CRPD Committee: Some Insights from Behind the Scenes.

Social Structures

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

Iryna Tekuchova

“Being a human rights treaty body member is highly rewarding,” states the UN Handbook for Human Rights Treaty Body Members. It also mentions that the member of the Committee on the Rights of Persons with Disabilities (the Committee) is expected to have “high moral character” and “recognized competence and experience in the field”. However, this document is silent about the fact that beyond these qualities and merits, the candidates to the Committee often have to face a rocky electoral path, which turns to be difficult for many. Being an expert in a field covered by the Convention on the Rights of Persons with Disabilities (the CRPD) and having “high moral character” is not enough to have a real chance to be elected. 

In 2020, I had the unique opportunity to coordinate the election campaign of one of my former colleagues in the Ukrainian organization for people with disabilities “Fight For Right”, who stood as the Ukrainian candidate to the Committee in the seventh election cycle. Looking back at the nomination and election campaign paths, which we have done, I can identify some tendencies and systematic challenges of these processes relevant for the candidates and the countries. Even though each candidate’s experience is unique and varies from State to State, some points of concern, incidental for Ukraine, might resonate with other countries and, thus, be subject to further analyses. In this blogpost, I would like to highlight four issues that may directly or indirectly influence the efficiency of the whole election process to the Committee.

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Escaping Disciplinary Capture: Making our Health and Social Services Work Better

Social Structures

Authors: Kate Rochford, 3rd Year Undergraduate Intern, Department of Psychology, Maynooth University & Mac MacLachlan, Co-Director of the Assisting Living and Learning (ALL) Institute, Maynooth University and Clinical Lead for Disability Services, Irish Health Service (HSE).

This figure illustrates the concept of disciplinary capture whereby one way of thinking (represented by one single text here) determines how people think about an issue. Like a whirlwind, it can often powerfully funnel thinking, ignoring the range of ideas available within the group, which otherwise may provide useful alternatives or additions to proposed actions. Image by Kate Rochford
This figure illustrates the concept of disciplinary capture whereby one way of thinking (represented by one single text here) determines how people think about an issue. Like a whirlwind, it can often powerfully funnel thinking, ignoring the range of ideas available within the group, which otherwise may provide useful alternatives or additions to proposed actions. Image by Kate Rochford

Introduction
An interdisciplinary approach to research has become increasingly popular when dealing with different topics (Aboelela et al., 2007). Such an approach can offer a more comprehensive or holistic perspective and is most suited to addressing real-world complex issues (Repko et al., 2017). However, while interdisciplinary collaboration may be appealing in theory, it is often difficult in practice (Cummings and Kiesler, 2007). In that regard, we believe that the concept of ‘disciplinary capture’ can supplement an enhanced interdisciplinary approach. It can also help to transpose academic thinking into practice. Particularly, in relation to disability, and services for persons with disabilities, this concept can translate into more effective integration of services.

Disciplinary capture involves thinking about problems from only one perspective (Brister, 2016). Disciplinary capture can determine what sort of ideas, facts, interventions or causal explanations, are depicted as permissible. For instance, a disease-model approach to mental health may only accept pharmaceutical interventions as being legitimate for a range of mental health problems, while a more psychological, social or human rights approach may not accept this (MacLachlan et al, 2021). In this scenario, if proponents of the disease model are positioned in such a way that other professions are expected to be deferential towards them, then this is likely to inhibit truly interdisciplinary practice. Moreover, this can impede the empirical merit of such a position through the preclusion of an open discussion which would allow for full exploration of all the possible alternatives. The result may manifest in poorer decision-making processes and sub-optimal interventions.

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December 3rd, UN International Day of Persons with Disabilities – Celebrating the ‘12th European Union (EU) Access City Awards Ceremony’ for Human-Centred Urban Living and Ending ‘Disabling Cities’

Audio Version

December 3rd, UN International Day of Persons with Disabilities – Celebrating the ‘12th European Union (EU) Access City Awards Ceremony’ for Human-Centred Urban Living and Ending ‘Disabling Cities’. 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). Voiced by Anastasia Campbell
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Participation matters – Global Survey on involvement of persons with disabilities in public decision-making

Audio Version

Participation matters – Global Survey on involvement of persons with disabilities in public decision-making – Maynooth University. Author: Rebecca Daniel – PHD Student, Assisting Living and Learning (ALL) Institute, Department of Psychology, Maynooth University. Voiced by Anastasia Campbell

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Participation matters – Global Survey on involvement of persons with disabilities in public decision-making

Ideas in ALL: ALL Blog One Year Anniversary Symposium and International Day of Persons with Disabilities

Social Structures

Symposium

Click here for Audio Version

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

Rebecca Daniel
Rebecca Daniel

The IDA Global Survey on political participation of Organisations of Persons with Disabilities (OPDs) was launched earlier this year and will remain open until the end of 2021. It is conducted as part of a PhD research project undertaken at the ALL Institute and discussed below on the occasion of the International Day of Persons with Disabilities.

The human right to participation of persons with disabilities through their representative organisations is clearly stated in the UN Convention on the Rights of Persons with Disabilities (UNCRPD). Articles 4.3 (on participation of OPDs in implementation of the UNCRPD overall) and 33.3 (on participation of OPDs in national implementation and monitoring of the UNCRPD), as well as General Comment No 7  specify this right. As far as the United Nations (UN) are concerned, participation of OPDs is a crucial principle to be considered throughout the activities of the UN, in line with indicator 5 of the United Nations Disability Inclusion Strategy (UNDIS) on consultation of persons with disabilities.

However, as one of the most marginalised groups (compare e.g. WHO World Report on Disability, WHO – Disability and Health and United Nations Office for Disaster Risk Reduction), persons with disabilities are in many ways excluded from public decision-making. Their full and effective participation in all decisions concerning their lives is yet to be realised (compare e.g. Bridging the Gap: The unsteady path, IDA: Increasingly Consulted but Not Yet Participating). Public programmes, policies, plans and projects, insofar as they consider participation, are all too often addressing members of civil society as beneficiaries or consumers of services instead of citizens (Andrea Cornwall).

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December 3rd, UN International Day of Persons with Disabilities – Celebrating the ‘12th European Union (EU) Access City Awards Ceremony’ for Human-Centred Urban Living and Ending ‘Disabling Cities’

Ideas in ALL: ALL Blog One Year Anniversary Symposium and International Day of Persons with Disabilities

Social Structures

Symposium

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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)

Matthew McKenna Profile Picture
Matthew McKenna

Friday December 3rd 2021 will witness the announcement of the winning contending cities for the 12th ‘EU Access City Awards Ceremony’ (Access City Award 2022).

The website of the European Commission (EC) says 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 says that ‘Persons living with disabilities are often the poorest and most vulnerable in cities today’. 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. However, increased costs of living alongside inaccessible urban planning, transport infrastructure and urban 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, thereby increasing the socio-economic disadvantages that are often experienced by persons with disabilities as a vulnerable demographic.

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December 3rd 2021, Exploring this year’s theme to commemorate the International Day of Persons with Disabilities

Ideas in ALL: ALL Blog One Year Anniversary Symposium and International Day of Persons with Disabilities

Social Structures

Symposium

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Author: Dr Ana María Sánchez Rodríguez, MSCA Fellow and Adjunct Assistant Professor of the Assisting Living and Learning (ALL) Institute

Ana Maria Sanchez Rodriguez
Ana Maria Sanchez Rodriguez

Since 1992, we celebrate the International Day of Persons with Disabilities (IDPD) and this year’s theme is “Leadership and participation of persons with disabilities toward an inclusive, accessible and sustainable post-COVID-19 world”. Similarly, in 2019, the theme was: “Promoting the participation of persons with disabilities and their leadership: taking action on the 2030 Development Agenda”. The IDPD 2019, focused on persons with disabilities and their organisations’ empowerment in order to push forward the Sustainable Development Goals Agenda. The IDPD reminds us of the challenges ahead and the way forward.

Supporting collaborative leadership and promoting meaningful participation of persons with disabilities and their organisations must be a priority. Persons with disabilities need to be engaged in the decision-making processes that affect their lives. To commemorate the IDPD, I’d like to suggest and reflect on the following questions:

  1. What does it mean to promote leadership and participation of persons with disabilities?
  2. What has been achieved so far in this regard?
  3. What are the learnings to bring forward to lead an inclusive, accessible, and sustainable change for persons with disabilities?
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International Day of Persons with Disabilities: Displacement and disabilities

Ideas in ALL: ALL Blog One Year Anniversary Symposium and International Day of Persons with Disabilities

Social Structures

Symposium

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Author: Élise Fabre, Legal Assistant, Law Firm specialised in Asylum Law, Paris (France)

Élise Fabre

The protection of human rights in migration and displacement is a major global challenge for policy makers, as 27 people perished trying to cross the Channel a week ago and others are suffering from deplorable living conditions at the beginning of winter on the doorstep of Poland.

According to the United Nations, migration refers to both voluntary and involuntary movement of people across borders, or within a country. While people move to search for a better life, some specifically fear persecutions and are forced to undertake a long journey to find peace and safe living conditions.

During their journey and in their host countries, migrants and refugees face great barriers in accessing their human rights, especially their social rights, such as the right to an adequate standard of living, including housing, food, and the right to the highest attainable standard of both physical and mental health. In its 2020 annual conclusions, the European Committee of Social Rights expressed concerns over the lack of access to social rights of migrant families and children in Europe. The Committee showed particular concerns about the treatment of children in an irregular migration situation and asylum-seeking children, as they encounter many obstacles in accessing safe and appropriate accommodation. The exposure to trauma, the separation or loss of family members and the lack of access to social rights lead to the prevalence of psychosocial conditions among refugee and asylum-seeking children. They are, hence, subjected to abuse, human trafficking and face great violations of their human rights.

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Vulnerable Groups and the Right to Culture: Challenges in a Digital World

Social Structures

Authors: Katie Donnellan, Delia Ferri, Noelle Higgins and Laura Serra; Maynooth University ReCreating Europe Research Team

ReCreating Europe Logo - Recreating in blue text Europe in mustard text. Image of mustard stars in shape of glass in lightbulb with blue bulb underneath to create image of lightbulb.
ReCreating Europe Logo

The world has become increasingly digitised, with digitisation having significantly escalated during the Covid-19 Pandemic. Lockdown restrictions implemented across the globe have pushed cultural content online and the internet has become the primary means of cultural enjoyment. This has generated ‘unprecedented challenges for the protection and promotion of diversity’ in digital cultural content, which risks exacerbating existing barriers experienced by marginalised people to the access and enjoyment of culture. Intellectual property law, specifically copyright law, is the primary regulatory means of protecting cultural creators’ proprietary rights over their content, and it traditionally operates to prioritise their rights over those of end-users, subject to certain limitations, exceptions and flexibilities as prescribed by law.

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International Day of Sign Languages: Promoting Sign Languages and Deaf Culture as part of Human Diversity

Social Structures

Click here for Audio Version

Click her for Irish Sign Language Version

Author: Léa Urzel – PhD Researcher ERC Project DANCING, ALL Institute – Department of Law, Maynooth University

Léa Urzel Profile Picture
Léa Urzel

Today, 23 September 2021, marks the fourth celebration of the International Day of Sign Languages. Currently, Covid-19 continues to affect the lives of people around the world. The ongoing pandemic has posed unprecedented challenges for all, including persons with disabilities. It has further exacerbated the barriers that Deaf people and other sign language users face in their daily lives and highlighted the difficulties encountered in accessing services and information, notably health services and public health information (Panko et al, 2021). At the same time, it has also enhanced the use of national sign languages in public broadcasting as numerous press conferences, public health briefings and other speeches by government officials continue to be broadcast featuring sign language interpretation.

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