Creating an Accessible Survey for the DANCING Project

Research Stream: Social Lives

Author: Hilary Hooks, Project Manager, Protecting the Right to Culture of Persons with Disabilities and Enhancing Cultural Diversity in EU Law: Exploring New Paths (DANCING) Project

The DANCING project, led by Principal Investigator (PI) Professor Delia Ferri, aims to investigate participation in culture by persons with disabilities. Access is a critical issue in all areas of life for people with disabilities. This includes the area of culture, and concerns people with disabilities who are (or who wish to be) involved at all levels, including as artists, arts-professionals, and audiences.

Reflecting on a Journey of Meaningful Impact: Celebrating with the ALL-Institute

Author: Mohamed Maalim – PhD Researcher at the ALL Institute, Department of Psychology, Maynooth University, and Senior Occupational Therapist and Project Lead, Digital Assistive Technology at Stewartscare

Research Stream: Lived Experience

A pivotal milestone in the calendar approaches as we come to the end of November. An occasion meriting grand celebration – the ALL Institute marks its sixth anniversary, a landmark that coincides with the 3^rd anniversary of its stirring initiative, the ‘Ideas in All’ Blog. As a former editorial team member, I was asked to reflect upon my association with the institute and share insights into my enduring journey with the ALL Institute and the ‘Ideas in All’ Blog.

I joined the ALL Institute, drawn in by its ethos of ensuring that everyone, regardless of their circumstances, has the support and opportunity to participate fully throughout their lives. This ethos was further embodied through the blog, focusing on inclusivity, accessibility, diversity, and participation.

Moving Forward to Have a More Inclusive Society

Author: James Cawley, Maynooth University Alumnus, Business Development Executive at the Irish Centre for Diversity, Disability Rights Activist, and Member of the Irish Human Rights and Equality Commission Disability Advisory Committee

Research Stream: Lived Experience

First, I want to extend my sincere congratulations to the ALL Institute team in marking the sixth anniversary of the ALL Institute at Maynooth University. Equally, I am delighted to contribute to the end of year symposium for the third anniversary of the Ideas in ALL Blog.

My name is James Cawley, I have contributed to the ALL Blog over the last 3 years. For me, the Blog remains an important channel to showcase empowerment and tackle social exclusion.

“The Future of Smart & Healthy Ageing: SHAPES Results, Recommendations & Reflections for an Inclusive Europe and a Participative Civil Society”

Posts

Symposium

Author: Tom Hall Research Assistant on the SHAPES project in ALL

SHAPES: Smart and Healthy Ageing through People Engaging in supportive Systems Logo. As European citizens’ life expectancy increases, older people (65+) account for a progressively larger percentage of the total EU population. Trends suggest this will rise from 21.2% in 2022 to 25% in 2030. Along with these demographic changes, larger numbers of people will experience health-related issues. This raises significant challenges for European healthcare systems. In light of these, the SHAPES (Smart and Healthy Ageing through People Engaging in Supportive Systems) project led by Maynooth University aims to create an integrated IT platform which offers a wide range of digital solutions. These are focused on improving the health, well-being, and independence of people as they get older.

The DANCING Mid-Term Academic Conference: Taking Stock of the First Three Years and Reflecting on the Challenges of Interdisciplinarity

Social Lives

Author: Eva Krolla, Research Assistant in the ERC-funded DANCING Project at the School of Law and Criminology and Assisting Living and Learning (ALL) Institute, Maynooth University

*DANCING Mid-Term Academic Conference speakers*

The European Research Council (ERC) funded research project ‘Protecting the Right to Culture of Persons with Disabilities and Enhancing Cultural Diversity in EU Law: Exploring New Paths – DANCING’ based at the ALL Institute and the School of Law and Criminology under the lead of Principal Investigator Prof. Delia Ferri marked its halfway point by hosting the DANCING Mid-Term Academic Conference on Monday, 4 September 2023 at Maynooth University.

Understanding the Role of Language and Discourse in Dynamics of Power and Discrimination

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)

The mission and work of the Assisting Living and Learning (ALL) Institute implements a novel, inclusive, and human-rights based perspective on ‘the development and application of appropriate technologies, person-centred systems and evidence-based policies and laws’. This highly complex and entangled web of social, legal, scientific and philosophical disciplines requires the skills and input from persons and professionals from a hugely diverse array of fields, who all share the common unifying goal of promoting a human-rights based approach to social inclusion, development and technological integration in society. Inclusive social policies and laws play a critical role in ensuring the equitable realisation of these goals. However, in order to challenge and disassemble discriminatory power structures supported by non-inclusive laws and policies inherited from an often problematic and segregated human history, it is imperative that future decisions are made with ‘eyes wide open’ to the role of humanitarian and inclusive discourse. These goals can only be achieved with social awareness and utmost caution to the powers of discourse, and through an understanding of how past wrongs can be repeated when there is collective ignorance towards the immense social influence and symbolic force wielded by language and social interaction.

“Every discourse, even a poetic or oracular sentence, carries with it a system of rules for producing analogous things and thus an outline of methodology”(Jacques Derrida, 1995)

A Right to Repair for Medical Devices?

Social Technologies

Author: Dr Opeyemi Kolawole (Post-doctoral Researcher, PatentInHuman Project)

Medical devices are integral to healthcare service delivery. Patients and healthcare service providers utilise these devices to diagnose, prevent, monitor, alleviate, and restore impaired body functions. Depending on the complexities of these devices and how they are deployed, they can become integrated with the patient’s body, and the patient’s healthy functioning and life may become dependent on the device (for example, an insulin pump or a pacemaker). Yet, like every other device, medical devices are susceptible to wear and tear: embedded software in the device may become obsolete over time, and physical elements may become deficient, making a device unsuitable for the patient’s needs. What options are available to the patient or health service provider in such instances? Should they, or a trusted repairer, be allowed to repair these devices? Patients and hospitals confronted this question at the height of the COVID-19 pandemic.

PatentsInHumans Public Launch Event: An Overview

Social Lives

Authors: Professor Aisling McMahon, Principal Investigator (PI) & Sinéad Masterson, Project Manager, PatentsInHumans

Professor Aisling McMahon presenting to attendees — Professor Aisling McMahon

On 20^th April 2023, the PatentsInHumans team were delighted to host the public launch event for the European Research Council (ERC) funded PatentsInHumans project in Maynooth University. The event was attended by over 45 individuals, including, members of the public, students and academics working in a range of disciplines (including law, biology, political science and business), practising lawyers, and technology transfer specialists.

The PatentsInHumans project, based in the School of Law and Criminology and ALL Institute at Maynooth University, commenced on the 1^st November 2022 and is a large interdisciplinary five-year project. It is funded by a European Research Council (ERC) Starting Grant and led by Professor Aisling McMahon. Alongside Professor McMahon, the PatentsInHumans team includes project manager, Sinéad Masterson, and postdoctoral researcher, Dr Opeyemi Kolawole. As the project develops, we will be recruiting more researchers to join the team in the coming months and years ahead.

From the Centre Back to the Margins: Invisibility of Persons with Disabilities in the Draft Convention on the Right to Development

Social Structures

Author: Harry Chikasamba, PhD Researcher, Assistive Living and Learning (ALL) Institute, School of Law and Criminology, Maynooth University

Harry Chikasamba

Until 2006, persons with disabilities were invisible in core legally binding human rights instruments, including the International Covenant on Civil and Political Rights (ICCPR) and the International Covenant on Economic, Social and Cultural Rights (ICESCR). Unsurprisingly, this was the case because persons with disabilities were being considered as having a lower social status, being dependent and inferior in society. In the early and mid-2000s, persons with disabilities convened as self-advocates in the historical halls of the United Nations (UN) in New York where they exhibited an unwavering spirit of resilience and genuine pursuit of equality which shaped and brought to life the first ever legally binding international human rights treaty in the 21^st century: the Convention on the Rights of Persons with Disabilities (CRPD). In principle, the CRPD protects and promotes the rights and dignity of persons with disabilities, ensuring their full and equal participation in society.

Sadly, the draft Convention on the Right to Development, currently undergoing negotiations at the UN, risks undermining the feeble progress painstakingly made over the past 15 years since the CRPD came into force in 2008. Among other gains, the CRPD has served as the major global catalyst towards viewing persons with disabilities as equal members of society, positioning disability as both a matter of human rights and of development which is evident in the inclusion of disability issues in the 2030 Agenda for Sustainable Development. Worth noting, disability and persons with disabilities are referred to 11 times in the 17 Sustainable Development Goals (SDGs) that make up the 2030 Agenda. Dishearteningly, the invisibility of persons with disabilities in the draft Convention means that, at this juncture, any prospects of advancing disability-inclusive development remain bleak and devoid of hope.

Nothing Without Us: Considering Public Patient Involvement in Research

Social Technologies

Author: Joan Alaboson is a Doctoral Researcher in the Department of Psychology, Maynooth University. She has a background in medicine and an MSc in Public Health with broad research interests in non-communicable diseases, particularly mental health, social determinants of health and quality of life.

‘What can be done to make settling into the PhD, better?’ asked Dirk, the Director of the Science Foundation Ireland’s Centre for Research Training in Advance Networks for Sustainable Societies (ADVANCE CRT) at a meeting with funded PhD students. Being the only one in the room that had recently commenced my studies, at that moment I felt there was a deep sense of concern for my well-being by ‘management’. It was the first of such fora I’d attended, and I left with a lasting impression of being in relatable company during my studies.

True inclusion, however, could often be elusive, despite best efforts. There is hardly any organization, entity or group that does not seek to represent the interests of those concerned. It may be expressed in a vision, mission, goals, or activities. Yet, many can be left out. Sometimes, it is a fault inherent in group development, when diverse people are not present to consciously bring unique perspectives to the fore. Similarly, it may result from work protocols or culture that fail to recognize and may neglect, systematically, the views and or needs of diverse people.

Research Stream: Social Lives

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