ALL Institute – Page 10

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!

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*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’.

Welcome message from the new Editors

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Hannah Casey, Léa Urzel & Matthew McKenna

Dear readers of Ideas in All,

As new editors, we are extremely happy to take on this position. We have seen the significant growth of the blog in the past year and its increased popularity. We hope to maintain this momentum while keeping pace with the evolving interdisciplinary research conducted by the Assisting Living and Learning (ALL) Institute.

We thank the outgoing ALL-Blog Editorial Team on the first anniversary of the ‘Ideas in ALL’ Blog for their fantastic work in expanding the blog and soliciting post from an invaluable network of leading experts in the field of disability, public health, law and social policy. As we take up our positions as the second ALL-Blog Editorial Team, we realize that we must strive to maintain the excellent standard and energetic impetus attained by our colleagues during their work on the blog in its embryonic phase. Despite the challenges of founding and growing a professional research blog during a global pandemic, the blog has already expanded to become an influential academic commentary on contemporary physical, social, political, and conceptual dimensions of society in the twenty-first century and resultant levels of accessibility, ableism, ageism, and mobility restriction therein.

Disability and the Media: Representation Matters

Social Lives

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Author: Dr Emma Smith, Assisting Living and Learning (ALL) Institute Member and Post-Doctoral Researcher; recipient of the prestigious Marie Sklowdowska Curie Actions Individual Fellowship

Emma Smith

I distinctly remember the first film I saw specifically related to disability. The film was Murderball, a documentary about the US and Canadian wheelchair rugby teams, their rivalry, and their experience in international competition. What was impactful and memorable about the film was not the focus on disability, it was the opposite. It was the fact that the film focused on team dynamics and personal experiences – things which you’d see in any documentary about any sports team. Of course, disability was relevant to those experiences, but for me, it was the first time I had seen media which was about disability, without being entirely focused on the disability itself. It gave me good perspective – people with disabilities were, first and foremost, people. They spoke openly and honestly about their experiences – they let me into their world for a moment, and contributed significantly to my decision to become an Occupational Therapist – a job which would let me help people with disabilities be people, to do the things which were meaningful to them.

Since then (it’s been a few years), I’ve always noticed those key moments when people with disabilities were represented in the media. For a long time, they were few and far between. Media often portrayed people with disabilities only in relation to their disability, or with stereotyped understanding of disability and not for the rich and full lives they were living. We often saw disability represented in relation to charity – a cause for fundraising. As the conversation shifted, we saw a rise in tokenism, where a person with a disability might be included in a conversation, but often only to fit a quota, or tick a box.

Participation matters – Global Survey on involvement of persons with disabilities in public decision-making

Social Structures

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Author: Rebecca Daniel – PHD Student, Assisting Living and Learning (ALL) Institute, Department of Psychology, Maynooth University

The IDA Global Survey on political participation of Organisations of Persons with Disabilities (OPDs) was launched earlier this year and will remain open until the end of 2021. It is conducted as part of a PhD research project undertaken at the ALL Institute and discussed below on the occasion of the International Day of Persons with Disabilities.

The human right to participation of persons with disabilities through their representative organisations is clearly stated in the UN Convention on the Rights of Persons with Disabilities (UNCRPD). Articles 4.3 (on participation of OPDs in implementation of the UNCRPD overall) and 33.3 (on participation of OPDs in national implementation and monitoring of the UNCRPD), as well as General Comment No 7 specify this right. As far as the United Nations (UN) are concerned, participation of OPDs is a crucial principle to be considered throughout the activities of the UN, in line with indicator 5 of the United Nations Disability Inclusion Strategy (UNDIS) on consultation of persons with disabilities.

However, as one of the most marginalised groups (compare e.g. WHO World Report on Disability, WHO – Disability and Health and United Nations Office for Disaster Risk Reduction), persons with disabilities are in many ways excluded from public decision-making. Their full and effective participation in all decisions concerning their lives is yet to be realised (compare e.g. Bridging the Gap: The unsteady path, IDA: Increasingly Consulted but Not Yet Participating). Public programmes, policies, plans and projects, insofar as they consider participation, are all too often addressing members of civil society as beneficiaries or consumers of services instead of citizens (Andrea Cornwall).

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

Stories/Lived Experiences

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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).

December 3rd, UN International Day of Persons with Disabilities – Celebrating the ‘12th European Union (EU) Access City Awards Ceremony’ for Human-Centred Urban Living and Ending ‘Disabling Cities’

Social Structures

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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)

Matthew McKenna

Friday December 3^rd 2021 will witness the announcement of the winning contending cities for the 12^th ‘EU Access City Awards Ceremony’ (Access City Award 2022).

The website of the European Commission (EC) says that the ‘Access City Award recognises and celebrates a city’s willingness, ability and efforts to become more accessible, in order to:

Guarantee equal access to fundamental rights;
Improve the quality of life of its population and ensure that everybody – regardless of age, mobility or ability – has equal access to all the resources and pleasures cities have to offer’.

The United Nations (UN) Department of Economic and Social Affairs says that ‘Persons living with disabilities are often the poorest and most vulnerable in cities today’. Cities in the twenty-first century are experiencing rapid growth, as populations shift from rural dwellings to urban areas in search of employment and greater economic prosperity. However, increased costs of living alongside inaccessible urban planning, transport infrastructure and urban architecture, render most cities inaccessible and inundated with hazards for persons with disabilities. Furthermore, cities around the world are experiencing rapid gentrification and rising costs of living, thereby increasing the socio-economic disadvantages that are often experienced by persons with disabilities as a vulnerable demographic.

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

Social Structures

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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?

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