Disability – Ideas in ALL

17/04/202417/04/2024

‘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.

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.

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.

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.

26/04/202310/10/2023

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.

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.

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.

24/02/202310/10/2023

United Nations International Day of Education 24^th January 2023 – How the Russian Invasion of Ukraine Denies Access to Education for Millions of Ukrainians

Social Lives

Author: Matthew McKenna, PhD Researcher at Maynooth University’s Assisting Living and Learning Institute (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

The 24^th of January 2023 was the UN International Day of Education, whilst today, the 24^th of February, represents the first anniversary of the start of the full-scale Russian invasion of Ukraine that began a year ago as of this morning. This blogpost will address the unfathomable human rights crisis and tragedy that has befallen the Ukrainian people and the subsequent denial of access to education in wartime.

“Establishing lasting peace is the work of education; all politics can do is keep us out of war” – Dr Maria Montessori.

Montessori, was an Italian medical doctor who pioneered the philosophy of education through her work with children with disabilities, starting in 1896. She delivered the above quote in the late 1930s while working on the ‘Education for Peace’ movement during her exile from Italy due to the anti-fascist ethos of her humanitarian work. Montessori believed that a lasting unity between nations and peoples could be achieved when the education of children was underpinned with the values of international peace and humanitarianism. Moreover, her work has had a profound impact on the gradual educational reforms that have slowly enabled persons with disabilities to enter education and has helped, albeit over time, to reduce the traditionally punitive and penal institutional approach to children experiencing learning difficulties. And as we marked the UN International Day of Education a month ago on 24^th January 2023, her words sound just as relevant in today’s context as they were in the agitated pre-war climate of the late 1930s.

05/12/202205/12/2022

Is Social Sustainability the Forgotten Pillar of Sustainable Development?

Social Structures

Symposium

Author: Ruth O’Reilly, Senior Built Environment Design Advisor, Centre for Excellence in Universal Design, National Disability Authority

Here at the Centre for Excellence in Universal Design, we often use this quotation from the designer, Victor Papanek, to explain the focus of our work:

The only important thing about design is how it relates to people

Quotation 'The only important thing about design is how it relates to people' alongside an image of a book with the title Design for the Real Workld, by Victor Papanek. — Figure 1: Quotation from Design for the Real World by Victor Papenek (1971)

A key tenet of Universal Design is that good design works well for everyone. Sometimes however, it seems that social sustainability is the forgotten pillar of sustainable development. How can we persuade designers that taking a Universal Design approach – designing for all people, regardless of their age, size, ability or disability – is a key element of sustainable development?

25/11/202206/10/2023

The Impact of the Welfare State on the Working Lives of Disabled Artists: A New Research Project in ALL

Social Structures

Author: Philip Finn, Assisting Living and Learning (ALL) Institute and Post-Doctoral Researcher; recipient of the Irish Research Council Enterprise Partnership Fellowship.

Philip Finn

Life as an artist is precarious, even more so for disabled artists. First, disabled people face higher risks of poverty, social exclusion, and discrimination in their working lives and in public services. Secondly, for many in the arts sector income is sporadic, producing an insecurity necessitating on interim reliance on welfare payments to get by. This is felt acutely by disabled artists, often accessing crucial welfare payments and supports, who receive lower incomes from artistic employment, funding and grants. My research focuses on the role of welfare state payments and wider supports in facilitating or impeding disabled artists’ working lives.

The right to participate in the cultural life of the community is enshrined in a number of international documents, for example the Universal Declaration of Human Rights (Article 27) and the International Covenant on Economic Social and Cultural Rights (Article 15(1)(a)). In relation to the specific needs of people with disabilities Article 30 of the UN Convention on the Rights of Persons with Disabilities requires States to ‘enable persons with disabilities to have the opportunity to develop and utilize their creative, artistic and intellectual potential’. The Convention is central to elaborating a human rights model of disability underlining the recognition and participation of persons with disabilities in communal life. It necessitates accessibility as both consumers of culture as well as creators.

10/05/202217/10/2022

Will you be RADICAL?

A call to Action for Revision of the Disability Act 2005

Social Structures

Authors: Mac MacLachlan, Delia Ferri, Delma Byrne and Anastasia Campbell – Assisting Living and Learning (ALL) Institute, Maynooth University

Black Background. White font large letters ‘Have your Say’ underneath subheading ‘Be RADICAL’ underneath text reads ‘Revision of the Act on Disability in Ireland through Collaborative Action for new Legislation’, the R, A, D, I, C, A, and L are bolded and underlined. — Be RADICAL: *Revision of the Act on Disability in Ireland through Collaborative Action for new Legislation*

By asking you to be RADICAL we are asking you to join us in calling for the Revision of the Act on Disability in Ireland through Collaborative Action for new Legislation.

We want to harness both new thinking and dissatisfaction concerning the Disability Act (2005), by constructively focusing on ideas for why and how the Act should and could be improved, now!

Our aim is to encourage legislators, and particularly the Minister for Disability, Anne Rabbitte, to begin the long-overdue process of legislative reform in disability. This year revision of the Education for Persons with Special Educational Needs, (EPSEN) Act (2004), was announced. Revision of EPSEN, without revision of its ‘sister Act’, the Disability Act (2005), with which it is closely intertwined, makes little sense. Furthermore, both of these acts predate the United Nations Convention on the Rights of Persons with Disability (CRPD) which, since our ratification in 2018 (we were the last country in Europe to ratify it), means that we are now obliged to comply with and deliver on the Convention.

18/02/202217/10/2022

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.

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