‘Lived Fiction’ Goes on Stage: Reflecting on a Major Milestone for the DANCING Project and the Collaboration with Stopgap

Research Stream: Stories / Lived Experiences

Author: Eva Krolla in dialogue with Professor Delia Ferri and Lucy Glover, Executive Producer at Stopgap Dance Company

Alt Text: Image on the left shows Eva Krolla smiling and wearing white, image in the centre shows Professor Delia Ferri smiling and wearing black, image on the right shows Lucy Glover smiling and wearing navy.

On 11^th April, the contemporary dance piece ‘Lived Fiction’ premiered at Dublin’s Lir Academy Theatre in collaboration with Project Arts Centre (PAC). The piece was commissioned by DANCING, a European Research Council (ERC) funded academic research project based at the School of Law and Criminology of Maynooth University. It was created by Stopgap Dance Company’s Deaf, Disabled, neurodivergent and non-disabled creatives under the lead of co-artistic director Lucy Bennett. Stopgap are a global leader of disability access in dance and are based in the UK. ‘Lived Fiction’ artistically embeds accessibility for dancers and audiences through an integrated creative access approach.

05/04/202409/04/2024

The ERC funded PatentsInHumans Project – Year One Project Report And Reflections!

Research Stream: Social Technologies

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

It is hard to believe that the PatentsInHumans Project has passed the one-year point having commenced in November 2022! And what a quick and busy year it was! Alongside recently publishing our Year 1 Report which gave us pause to reflect on the project, we were delighted to write this article for the IDEAS in ALL Blog to mark the first year of the project and to provide a snapshot of the research and other activities the PatentsInHumans team have undertaken during this time.

The PatentsInHumans Project:

29/03/202410/04/2024

What Role is There for Artificial Intelligence in the Assessment of Neurodiversity?

Research Stream: Social Technologies

Author: Emily McConway, Undergraduate Intern in Psychology, Maynooth University and Mac MacLachlan, Professor of Psychology & Social Inclusion, and Co-Director of the ALL Institute, Maynooth University

Early assessment and intervention are vital in facilitating positive developmental and behavioural outcomes for children with neurodevelopmental conditions. Early intervention has a positive long-term effect on both autistic children and their caregivers. The current process of assessing the needs of children with possible autistic traits focuses on the use of behavioural clinical diagnostic instruments such as Autism Diagnostic Observation Schedule (ADOS) and Autism Diagnostic Interview-Revised (ADI-R). Both instruments require direct clinician-to-child observation and can take hours to administer and score. In many countries, long waiting lists, coupled with social, economic and geographic barriers hinders timely assessment of neurodiverse children. The ALL Institute is interested in pragmatic ways to streamline access to services, including assessing a person’s needs for services and supports.

22/03/202422/03/2024

Equality in a Digital Future? Ensuring Access to Assistive Technology in Third-Level Education

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)

Supporting universal and consistent access to Assistive Technology (AT) at third-level education within Higher Education Institutions (HEIs) in Ireland represents a critical milestone to achieving equal opportunities for persons with disabilities.

11/03/202411/03/2024

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.

15/12/202315/12/2023

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.

15/12/202315/12/2023

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.

10/11/202328/11/2023

“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.

02/10/202328/11/2023

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.

28/07/202328/11/2023

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)

30/06/202328/11/2023

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.

14/06/202328/11/2023

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.

09/06/202328/11/2023

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.

12/05/202328/11/2023

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.

05/05/202310/10/2023

Let’s Get Digital – Tackling Digital Poverty for all in South Dublin

Social Technologies

Author: Neasa Boyle, PhD Researcher, Assisting Living and Learning (ALL) Institute, Department of Psychology, Maynooth University

It’s impossible to overlook how deeply technology has influenced daily life, employment, and education today. With its growing importance, education systems must adapt to ensure that students are prepared for the modern digital world and obtain the skills to navigate a technologically advanced society. However, such education streams have only been implemented in recent decades, limiting social inclusion for individuals who are out of education, training, or employment. This new demand for digital skills leaves a large proportion of the population with the responsibility of upskilling, or else facing the risk of being left behind in the current job market and, ultimately, being left unable to participate in the society.

19/04/202310/10/2023

Maynooth Alumnus and Disability Activist Selected to Represent Disabled People in the European Parliament

Stories/Lived Experience

Author: James Cawley, 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

James Cawley

James Cawley is a disabled activist from County Longford and an alumnus of Maynooth University who is currently working as a Business Development Executive at the Irish Centre for Diversity. He is also a member of the Irish Human Rights and Equality Commission (IHREC) Disability Advisory Committee (DAC) and has worked in numerous capacities and functions in the areas of education and disability rights advocacy. He has represented persons with disabilities in public and governmental fora, having recently served on the Irish Government’s Disability Stakeholder Group (DSG 6) in 2022 after his appointment to the group by the incumbent Minister of State for Disability, Anne Rabbitte.

The function of the DSG 6 is to play an important role in the ‘monitoring of the government’s disability policies and strategies’ and it comprises a membership representative of a diverse group of people from the disabled community.

31/03/202310/10/2023

My First St. Patrick’s Day in Ireland, a Sharp Reminder of Moments Past Lived

Stories/Lived Experience

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

Every experience is different. And my late grandpa told me, when I was a few days to my 20^th birthday, that ‘…in experience, we learn more about ourselves and others. You should be an ardent learner of life, through lived experiences.’ With that in mind, I became a learner of life. And everything fun, and beautiful.

17^th March 2023 brought about its own lessons, unique and memorable. Most importantly, the day took me down memory lane. For the Irish, and several others, one needs no sermon about this day. No! St. Patrick is well-known across cultures and races. He was, and remains, a core part of the Irish culture – and identity.

22/03/202310/10/2023

Rapid Neonatal and Maternal Sepsis Detection in Resource Limited Environments

Social Technologies

Authors: Nicola Mountford, Assistant Professor, School of Business, Assisting Living and Learning Institute (ALL), Maynooth University and Sean Doyle, Professor, Department of Biology, Maynooth University

Neosepsis project logo, Sean Doyle, Nicola Mountford

Over 32,000 neonatal deaths occur per annum in Uganda, with sepsis accounting for 20% of this death rate – that’s 6,500 newborn babies who die of sepsis in just one country in the world. That’s not all, sepsis also accounts for almost a quarter of maternal deaths in Uganda. Our project, NEOSEPSIS, aims to reduce these numbers by introducing an easy-to-use, 15 minute lateral flow test to help to better diagnose sepsis in resource limited environments, such as Uganda.

The test detects Serum amyloid A, or SAA – a globally validated biomarker of sepsis. The lateral flow test used in this process is very similar to the type of antigen test that you might have used to help diagnose whether or not you had Covid-19. It is just as user-friendly, rapid, and equipment-free as one of those Covid antigen tests. This makes it particularly suited to environments where it might be difficult to take, store and transport samples.

16/03/202310/10/2023

The Right to Health of Vulnerable and Marginalised People in Ireland

Social Structures

Author: Ollie Bartlett, Assistant Professor of Law, Assisting Living and Learning (ALL) Institute, School of Law and Criminology, Maynooth University

Ollie Bartlett

The world was clearly inadequately prepared to fight Covid-19. An important factor in this was the inadequacy of public health law frameworks at international, regional and national level. Political attention quickly turned to the creation of a new pandemic treaty and the revision of supranational rules concerning cross-border health threats, comparatively little attention has been placed upon the role that the right to health should have played in shaping Covid-19 policy, or what role it should play in the future development of public health policy.

I have written on this question in the Irish context, and concluded that the debate begun in 2019 on the need for a right to health in the Irish Constitution is worth returning to. A constitutional right to health would support clearer and more proportionate public health decision-making, and may facilitate more direct challenges to government policies that have unacceptable or inappropriate consequences for health outcomes.

10/03/202310/10/2023

‘Lived Fiction’ – First sharing of Inclusive Contemporary Dance Choreography within the DANCING Project

Social Lives

Authors: Ann Leahy, Post-doctoral Researcher, and Delia Ferri, Professor of Law, ERC Project DANCING, Assisting Living and Learning (ALL) Institute, School of Law and Criminology, Maynooth University

DANCING: Researching Disability and Diversity in Culture

The Project “Protecting the Right to Culture of Persons with Disabilities and Enhancing Cultural Diversity through European Union Law: Exploring New Paths (DANCING)”, based at the ALL Institute, reached an important milestone at the end of February 2023. The initial work on an inclusive and accessible piece of contemporary dance created by Lucy Bennett and Stopgap Dance Company for DANCING was performed in Dublin in front of an invited audience. The work will be fully ready next year, and we are already looking forward to the world premiere in Dublin in early 2024.

The image shows Stopgap Dance company during the choreography. The image shows dancers from different ethnical backgrounds some of whom on a wheelchair.

On 24^th February 2023, Stopgap shared their work-in-progress in a pre-staging fashion, and without costumes or lighting at DanceHouse in a dedicated event organised in collaboration with Dance Ireland. ‘Lived Fiction’ – the title of the work being created by Lucy Bennett and collaborators from Stopgap – is an original piece of choreography that is performed by a group of disabled and non-disabled dancers and endeavours to be accessible to all. Stopgap’s devising process is based on key inclusive methods that the company has collectively developed and is a living example of how society should and could be, valuing the richness that comes from diversity. Experimenting and working on accessibility for both dancers and audience allows for a deep understanding of what accessibility really means. However, this choreographic work is also meant to be a “tool for change” by raising awareness on inclusive cultural participation.

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Research Stream: Social Lives

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