IdeasInALL – Page 10 – Ideas in ALL

The Tragic Age: Life without a PA

Stories/Lived Experiences

Author: Ross Coleman is a Translator, Writer and Disability Rights Activist from Dublin

Ross Coleman

“Ours is essentially a tragic age, so we refuse to take it tragically”, thus opens D.H Lawrence’s famous novel Lady Chatterley’s Lover, published in 1928 in which a bored unfulfilled housewife embarks on an affair with the gardener on her husband’s estate. Clifford Chatterley, Lawrence informs us, is a cripple, badly injured from serving in the front. Since his injury, he has become cold and unfeeling, absorbed in books and his intellect, only going outside to toot along in his electric bathchair. When I first read the book a few years ago, I dismissed it as a bygone relic of an ableist age. And yet, despite that, I was forced to admit a single harrowing fact: nothing has really changed.

I require a Personal Assistant (hereafter referred to as a PA) in order to help with daily tasks that I cannot do myself: getting dressed, going to the bathroom, showering. At the moment, my parents provide this support and have been providing it since I was born. If I want to go out, I either have to go out with my parents or just not go to the bathroom. Neither of these are desirable solutions. I should not expect, neither do I want, my parents to accompany me to every social function, but nor can I just not go to the bathroom.

The future of work and disability: learning our way forward

Social Lives

Author: Joan O’Donnell, Doctoral researcher with the Assisting Living and Learning (ALL) Institute, funded by ADVANCE CRT and the SFI. She lectures in the MSc programme in Systems Thinking In Practice with the Open University and is the author of the Employers for Change report referred to in this blog.

Joan O Donnell

Continuous advances in technology and Assistive Technology (AT) enhance the range of work that people can do outside the office environment, making working-from-home (WFH), hybrid or remote working a realistic option for many workers with disabilities. It may suit those seeking greater flexibility in their working day, allow for better management of disabling conditions at home or sidestep the need to negotiate public transport.

Disability and work poses a complex issue that persists despite broad recognition of the interrelationship between disability, poverty, education, housing in the Sustainable Development Goals (SDGs) and the UN Convention on the Rights of Persons with Disabilities (CRPD) Article 27, which commits to safeguarding and promoting the right for disabled people to work on par with others. While the Organisation for Economic Co-operation and Development (OECD) suggests there is a greater need to engage employers to build a better world of work for persons with disabilities, the ESRI finds that there is also a need to understand the experience of disabled people in work.

Women & Girls in STEM: We Need a New Pipeline!

Social Lives

Authors: Dr Katriona O’Sullivan, Digital Skills Lecturer, ALL Institute, Maynooth University. Dr Serena Clarke, Post-Doctoral Researcher, ALL Institute, Maynooth University. Dr Holly Foley, Programme Manager, STEM Passport for Inclusion, ALL Institute Maynooth University.

Girls studying Science

a group of girls studying science and using technology — *Pictures from STEM Passport for Inclusion | Maynooth University Lab Days*

When thinking about women’s participation in Science, Technology, Engineering and Math (STEM), we often use the leaky pipeline as an analogy. There are specific places where women ‘leak’ out. For example, in school, young girls who show an early interest in science careers have often changed their minds by the time they reach secondary school due to a lack of STEM subjects and STEM supports being offered to them. In college women who opt for STEM often change their minds before graduation. Those who do graduate with a STEM degree often leak out of the pipeline after graduation -opting for careers that are suitable to their family life. While others hit the glass ceiling when trying to progress into STEM leadership roles. In all cases, we see that women leak out of the STEM pipeline more than men do (Clark Blickenstaff, 2005). When considering the pipeline analogy, it is about time that we admitted as a society, especially on a day like today –International Women and Girl in STEM Day– that the STEM pipeline is well and truly broken– in fact, we need a whole new plumbing system… and we could probably do with a group of female scientists and engineers on hand to make sure it doesn’t break again.

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 & 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.

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.

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

Social Structures

Authors: Kate Rochford, 3^rd 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

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.

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.

Autumn School Reflections: Inclusive Methods for a Shared Sustainable Future

Social Lives

Authors: Tadhg E. MacIntyre Assistant Professor, Dept. of Psychology, Maynooth University and scientific coordinator of the H2020 project GoGreenRoutes. Chloe Mooney is a third year BSc. Psychology student and was an intern for GoGreenRoutes this semester. Cassie Murphy MA is second year MU Psychology doctoral student, on a scholarship funded by GoGreenRoutes, supervised by Dr. Elaine Gallagher and Dr. Tadhg MacIntyre.

Stephen Seaman (Head Groundsman) explains how they cultivate a green campus approach.

The Maynooth University green campus with 700-year-old trees provided an authentic backdrop to our GoGreenRoutes project Autumn School concerned with understanding the links between nature and health. Our award winning campus venue (see here for Green Shoots feature) was a highlight for participants who had a tour of the grounds with Stephen Seaman supported by Rachel Freeman (TU Dublin, PhD candidate on GoGreenRoutes).

The wonder of our bucolic campus, recently featured on RTÉ, was not lost upon our new President Eeva Leinonen who noted how nature may be vital for effective leadership too. Our president, a psychologist, quoted as she opened the event, the 44th President of the United States Barack Obama who, in his memoirs had said, how the one-minute open-air commute along the colonnades that bookmarked his day helped him clear his mind and free him from stress. This speech was followed by a superb strategic overview of gender, inclusion and diversity at Maynooth University and beyond, by Vice-President for Equality, Diversity and Inclusion Dr Gemma Irvine, which set the tone for event, with strong gender representation across all the sessions (over 60% Women speakers) and more emphatically, an appreciation for inclusion at every level.

Here we are, one year later…. Happy Birthday Ideas in ALL!

Symposium

Click for the Audio Version

*Deirdre Desmond, Mac MacLachlan and Delia Ferri, ALL Directors*

Exactly one year ago, on 3 December 2020, in the midst of the second wave of the Covid-19 pandemic, we launched “Ideas in ALL”: The New Blog of the ALL Institute, as another way in which the Assisting Living and Learning (ALL) Institute seeks to contribute to approaching our most ambitious goal: the creation of a fairer and more inclusive society for all. In 2020, at a difficult and grim time, we felt that it was important to foster a dialogue on empowering people living with a disability or chronic illness, older people, or those marginalized from the benefits of mainstream society.

When we set up Ideas in ALL, we knew that there were several diverse and interesting blogs out there. In fact, it is hard to believe that the term ‘blog’ was coined in the late Nineties and, since then, we have experienced a continued and sustained mushrooming of all sorts of blogs. It may seem as if blogs have reached their saturation point. But no, they have not. Blogs remain one of the best ways to share our ideas, our research, and our curiosities, engage with the general public, contribute to open and transnational thought, in what Baumann has described as a ‘liquid modernity’ and a ‘liquid society’. For us, a blog was and still is the best way to ‘reflect on some old challenges, shed a light on new ones and feel our way in the dark of the unanticipated’.

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