Inclusion – Page 2 – Ideas in ALL

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.

Tuesday May 30th: World MS Day

Lived Experiences

Author Bio: Dr Rebecca Maguire is an Associate Professor in the Department of Psychology at Maynooth University. Her research interests include health and wellbeing in chronic illness, caregiver burden, health-related expectations, qualify of life and psycho-oncology. In addition, Rebecca has been living with multiple sclerosis for a number of years, which has influenced her research agenda. She is also a board member of MS Ireland.

Dr Rebecca Maguire

Tuesday 30^th May marks World MS Day – an occasion celebrated by the global MS community with the aim of raising awareness of the condition known as multiple sclerosis (MS). In Ireland, it is estimated that approximately 9,000 people live with MS, however this number could be higher, with one study suggesting that around 300 people are diagnosed in the country every year. Internationally, almost three million people live with the condition, with rates twice as high in women than in men.

Simply put, MS is a chronic, often progressive, neurological condition in which the body’s immune system attacks the central nervous system, resulting in damage to myelin, thereby disrupting signals to and from the brain (see definition from the US National MS Society). Anecdotally, almost all people will have heard of MS, with many having a family member, friend or colleague living with the condition. However, few people will truly understand what MS is, unless, of course, they live with it themselves. To a certain extent I am privileged in this respect, having lived with MS for a number of years now, although my experience has also made me very aware that no two people with MS are the same. The disease can have wide-ranging, fluctuating and variable impacts for those affected, potentially leading to high levels of disability for some, while having minimal effects on the lives of others. Similarly, although some people with MS may require the support of caregivers, many others continue to live independently, holding down demanding jobs, juggling caring responsibilities and whatever else live entails. However, for almost all affected, MS and its management brings additional physical and psychological burdens which can, at times, be difficult to navigate.

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.

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.

An Environmental Scan of the Web in Anticipation of the Capacity Act

Social Structures

Author: Hannah Casey, ALL Blog Editor and PhD Candidate at the Department of Psychology, Maynooth University

Hannah Casey

At long last, the highly anticipated Assisted Decision-Making (Capacity) Act 2015 has been fully commenced in Irish law today, April 26^th. This Act, which replaces the outdated Lunacy Act of 1871, aims to align with Article 12 of the United Nations Convention for the Rights of Persons with Disabilities (UNCRPD) by enshrining in statute the right for people with disabilities to make their own decisions, and removing formal guardianship arrangements. As part of this new structure, the Decision Support Service (DSS) will finally be able to open its doors and provide much needed services, supports, and resources to people who need it. This service will allow people with disabilities to access necessary supports to make their own decisions, with as much help as they themselves deem necessary. Such decision-making is referred to as supported or assisted decision-making– a formal method of support that has fast been gaining traction across the world.

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.

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.

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