covid 19 – Ideas in ALL

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.

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.

04/05/202217/10/2022

ALL and the Dept. of Adult and Community Education Addiction/Psychology Seminar Growing Space: Recovery, Education and Capability

Stories/Lived Experiences

Author: Deirdre Delaney, accredited psychotherapist (M.I.A.H.I.P, MCPI) and a tutor with the department of adult and community education in Maynooth University.

Deirdre Delaney

The Adult Education programme run by Maynooth University reaches all parts of Ireland. Every year our Addiction and Psychology certificate and diploma programmes gather from all around the country to share a day of presentations and workshops on the Maynooth campus. It is a very important day in our academic calendar but of course over the last two years we were unable to gather. Though an online day was organised, the pandemic never felt more real. Students and tutors alike missed the opportunity to be together with others on campus. For many students it will be their first time to set foot on a university campus. I always hope that it won’t be their last time.

20/12/202117/10/2022

Supported Decision Making and Next of Kin: The DSS Perspective and new perspectives for innovative participatory research

Social Lives

Author: Hannah Casey, Assisting Living & Learning( ALL) Institute Blog editor and PhD Candidate, Decision Support Service

Hannah Casey

Supported Decision Making is a method that may be employed by persons who require help to make decisions in their day-to-day lives. These decisions may range from, where to go on holiday, to, how to manage financial concerns. Supported Decision Making is gaining traction and importance across the globe, and particularly in an Irish context in anticipation of the Assisted Decision Making (Capacity) Act 2015, set to be commenced in full by mid-2022. This has the added effect of ensuring Ireland may fully honour Article 12 of the United Nations Convention on the Rights of Persons with Disabilities, which states that persons with disabilities have the right to make their own decisions, and enjoy the same legal capacity that people without disabilities have in their lives. The Decision Support Service (DSS) has been established to support persons to exercise their right to make decisions, with the key understanding that a person’s capacity to make decisions should be assessed by reference to the decision in question.

03/12/202117/10/2022

December 3rd 2021, UN International Day of Persons with Disabilities: Fighting for Rights in the Post – COVID Era

Stories/Lived Experiences

Symposium

Click here for Audio Version

Author: James Cawley, Policy Officer, Independent Living Movement Ireland (ILMI)

First of all, a big thank you to the “ALL Blog” for asking me back to contribute for the International Day of Persons with Disabilities. It has been an extremely busy year, (all online), with working from home and receiving endless updates on the Covid-19 pandemic. December 3^rd is the UN International Day of Persons with Disabilities, and I sit here with straw and a mug of tea in hand, writing this blog one year since it started!

I’m a very proud Irish disabled man who is a son, brother, husband, friend and co – worker. I also work as a Policy Officer for Independent Living Movement Ireland (ILMI).

We are a campaigning, ‘national cross-impairment disabled person’s organisation’ or ‘DPO’ as defined under the United Nations Convention on the Rights of Persons with Disabilities (CRPD).

03/12/202117/10/2022

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

Social Structures

Symposium

Click here to view Audio Version

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

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:

What does it mean to promote leadership and participation of persons with disabilities?
What has been achieved so far in this regard?
What are the learnings to bring forward to lead an inclusive, accessible, and sustainable change for persons with disabilities?

03/11/202117/10/2022

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

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.

29/10/202117/10/2022

It’s Probably Nothing: My Breast Cancer Diagnosis

Stories/Lived Experience

Author: Aoife O’Brien, Academic Council Officer, Maynooth University

Side by side pictures of Aoife O'Brien - Left shows Aoife before Cancer treatment with long dark hair smiling. Right shows Aoife during her cancer treatment with no hair looking glamorous and smiling — Side by Side of Aoife O’Brien

When I was asked to write a piece for this blog, I felt quite flattered. But the truth is, I’m not that special. I’m one of about 3,600 women who were diagnosed with breast cancer in 2020.

It was early in August 2020 when I discovered the lump in my breast. An unusually persistent pain prompted me to look at myself in the mirror, and I noticed the skin looked rippled. I knew enough to know that was a warning sign and on closer examination I could see and feel a lump, about the size of a golf ball. I was hesitant in contacting my GP, hoping that the problem would just sort itself out. But of course, it didn’t. It stayed there, defiantly staring at me. So, I went to the doctor to have it checked out, all the time convincing myself that it was probably nothing. When my GP quietly told me she wanted to refer me to the Mater Hospital for further investigation, my confidence was rocked a little, but even then, I kept telling myself it would turn out to be nothing.

23/09/202114/10/2022

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

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.

23/08/202117/10/2022

Promoting Engagement in Sport for Persons with Disabilities Through Assistive Technology

Social Lives

Authors: Dr. Emma Smith, Postdoctoral Researcher, AT2030, ALL Institute, Department of Psychology, Maynooth University and Ana Geppert, Masters student of Global Health at VU Amsterdam, intern with the ALL Institute at Maynooth University, in partnership with Loughborough University.

Photo by Audi Nissen on Unsplash: ESPN WIde World of Sports Complex, United States Womens wheelchair basketball — Photo by Audi Nissen on Unsplash

In celebration of the launch of the #WeThe15 campaign; the largest ever global human rights campaign to increase awareness and social inclusion of people with disabilities through sport, we would like to share some of our recent research in the area. #WeThe15 is an acknowledgement that at least 15% of the world population – over 1 billion people – live with one or more disabilities, each of whom is entitled to all of the rights and freedoms, and the benefits of social inclusion experienced by people without disabilities worldwide. Of those rights affirmed in the UN Convention on the Rights of Persons with Disabilities, Participation in cultural life, recreation, leisure, and sport (Article 30) is one that we have had a recent focus on in our work.

25/06/202117/10/2022

Day of the Seafarer

Social Structures

Author: Joanne McVeigh, Lecturer at the Department of Psychology and the ALL (Assisting Living & Learning) Institute, Maynooth University

Joanne McVeigh

June 25^th marks the Day of the Seafarer, an international campaign aiming to increase governments’ support for seafarers during the pandemic, but to also more broadly ensure fair treatment and equitable employment conditions for seafarers. We often fail to appreciate our reliance on the world’s 1,647,500 merchant seafarers for the effective functioning of the global economy. However, international trade is underpinned by maritime transport, whereby approximately 80% of the volume of global trade and 70% of the value of global trade are transported by sea. In the book Ninety Percent of Everything: Inside Shipping, the Invisible Industry that Puts Clothes on Your Back, Gas in Your Car, and Food on Your Plate, British author Rose George questioned: “Who looks behind a television now and sees the ship that brought it? Who cares about the men who steered your breakfast cereal through winter storms? How ironic that the more ships have grown in size and consequence, the less space they take up in our imagination” (p. 2). Indeed, the importance of merchant shipping was brought into sharp focus by a container ship obstructing the Suez Canal in Egypt, through which more than 50 ships pass daily, constituting approximately 12% of world trade.

24/05/202117/10/2022

ALL Institute and the new HSE Digital Health Transformation Masters.

Social Structures

Authors: David Prendergast: Professor in the Department of Anthropology, Trevor Vaugh: PI at Mi:Lab, The Maynooth Innovation Lab and Assistant Professor in Department of Design Innovation, Linzi Ryan: Assistant Professor in Department of Design Innovation, Mac Maclachlan: Professor of Psychology and Social Inclusion, and Co-director of the ALL Institute

Image of a monitor in a casula office space - screen shows image of elderly persons hands resting on a walking stick on the top half white background on the bottom half. Text Reads CS6024 Digital Health and Wellbeing in the community. MSc in Digital Health Transformation. Underneath text reads: Trevor Vaugh & Linzi Ryan, David Prendergast & Mac MacLachlan, MAynooth University Dept of Design Innovation, Anthropology & Psychology. ALL Institute (Assisting Living and Learning). Logos on Bottom Left Hand Side of the Screen: HSE University of Limerick, Maynooth University, ALL Institute. — CS6024 Digital Health and Wellbeing in the community.
MSc in Digital Health Transformation.

On Wednesday 4th September 2019, the inaugural Health Service Executive ‘Digital Academy Forum’ was held at Dr Steeven’s Hospital in Dublin. During this meeting, Dr Colm Henry, Chief Clinical Officer for the HSE announced plans for an ambitious and experimental Masters in Digital Health Transformation to help build digital skills and train future leaders in health service innovation. Co-designed between the HSE and several Irish Universities, including Maynooth, Limerick, UCD, DCU NUI Galway and University College Cork, the new degree runs over 18 months and is open to HSE employees and the General Public.

In the first semester of the degree, students completed five modules on topics ranging from eHealth Systems and Standards, Health Information Modelling and Governance, Research Methods and Digital Health Service Transformation. In the second semester, topics such as Digital Health Change Management, Clinical Decision-Making, Data Science and AI in Healthcare were covered, along with a design innovation module on Digital Health and Wellbeing in the Community run by the Assisting Living and Learning (ALL) Institute at Maynooth University. Building on these modules, students were expected to work on a substantial project designing, developing and deploying a digital solution within the Irish Healthcare system.

05/05/202117/10/2022

Nothing About Us Without Us – Reflections on the European Day for Independent Living

Stories/Lived Experience

Author: James Cawley, Policy Officer, Independent Living Movement Ireland

James Cawley

First of all, a big thank you to the “ALL Blog” for asking me to contribute! When doing some reflections on the European Day for Independent Living I was thinking about what I would write. I’m writing this blog as a very proud Irish Disabled man who is a son, brother, husband, friend and co – worker. Quite often I’m asked to speak about Independent Living, so this particular piece is coming from my personal and professional lived experience. I attended mainstream education in primary and secondary and entered Maynooth University through the DARE scheme where I completed a BA in Business and Geography, a Professional Masters in Education and then a Certificate in Transformative education with the Turn To Teaching project there within the University. I’m delighted to write this blog as I’m a very proud “Maynooth Access Office” alumni – Rose Ryan and her team are legends in my book!! Of course, being from a big family and being the youngest of 9 siblings from rural County Longford I did everything I wanted from festivals to shark cage diving to ending up marrying my beautiful wife Ally and settling back in rural Longford.

I worked hard in college (and loved to party) and got to pursue my passion for teaching and then wanted to hone my activism skills and bring other people along with me as a collective. When the opportunity came up in Independent Living Movement Ireland (ILMI) I jumped at it and now work as policy officer for the National Disabled Persons Organisation (DPO). I also co – facilitate on the Disability Studies Certificate at Maynooth University.

For me, Independent Living is when all the pieces of the “Independent Living Jig saw” fit together which some include Housing, Transport, Employment and Personal Assistance Services (PAS). Independent Living Movement Ireland (ILMI) are a campaigning, national cross impairment disabled person’s organisation or DPO as defined under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).

01/03/202117/10/2022

Promoting Equal Participation and Eliminating Discrimination: Time to Change the Narrative.

Social Lives

Author: Mohamed Maalim – PhD Researcher, of the ALL Institute, Department of Psychology, Maynooth University

Blue Butterfly with Brown slate background. Zero Discrimination Day 01 March 2021 wording in top right hand corner

The Zero Discrimination day is celebrated annually on the 1st day of March, to reflect on our rich human diversity and the need for equal opportunity to enjoy fundamental human rights, and to fight against discrimination in all its forms and manifestations. This year, above all previous, the ongoing global COVID-19 Pandemic with all its disruptive nature and the misfortune it has brought and caused, has also offered humanity a glimpse of its ‘non-discrimination’ attribute. The advent of COVID-19 reinforced upon us that we are all equal as humans in our susceptibility, our fear and concern for self and others, and indeed in our hope of getting back to as ‘normal life’ as possible or whatever that ‘normal’ means.

Additionally, with Covid-19, we have adopted a common enemy enforcing upon us an almost military-type operation to fight back. The nations of the world in an unprecedented fashion formed ‘NATO’ type alliances and collaborative networks with the ‘Big Tech’ and ‘Big Pharma’ in a concerted effort to develop digital contact tracing and tracking apps‘ and vaccines, respectively. Individual governments assumed the role of commanding officers alongside senior health personnel, frontline healthcare workers, and other so called ‘essential’ workers as the foot soldiers of the operation, while the general public’s hearts and minds were won by calls to stay at home to suppress the virus.

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