Ideas in ALL

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).

Digital Visual Arts and Cognitive Neuroscience: Keeping the “me” in memory research

Social Technologies

Author: Dr Richard Roche, Dept of Psychology

Maynooth Illuminations exhibition space - Maynooth University — Maynooth Illuminations exhibition space – Maynooth University

Memory is arguably the most important cognitive function we possess, and its loss leaves a profound gap in many aspects of life. The progressive deterioration of brain structures responsible for memory – so common in old age, and even more so in degenerative conditions – robs people of so much: their most treasured moments, their ability to recognise friends and family, their independence, their confidence, their very sense of self. While pharmaceutical remedies for memory decline remain unsuccessful, research with lifestyle-based, non-pharmacological interventions may offer promising avenues for the future. Among these approaches in Reminiscence Therapy, whereby older people – often in group settings – meet regularly to actively recall and share memories from earlier life epochs, with the process often steered by a moderator. At one time, older adults reminiscing was considered a worrying sign, suggesting some form of regression, but since Butler’s seminal paper in 1961, the benefits of reminiscence – resolving affairs, giving meaning to life – have been well studied, leading to the adoption of Reminiscence Therapy in many care homes and hospitals.

Let’s talk about non-verbal communication

Audio Version

Let’s talk about non-verbal communication – in Maynooth University. Authors: Shauna Louise Byrne, Sales Assistant, studying Sign Language and QQI Level 5 Medical Terminology & Kimberly Wright, Postgraduate LLM student Global Legal Studies. Voiced by Kimberly Wright

Towards an Inclusive Creativity: reCreating Europe for World Intellectual Property Day 2021

Authors: Giulia Priora – Postdoctoral researcher, Institute of Law Politics and Development, Sant’Anna School of Advanced Studies Pis, Caterina Sganga – Associate Professor, Institute of Law Politics and Development, Sant’Anna School of Advanced Studies Pisa, Arianna Martinelli – Associate Professor, Institute of Economics, Sant’Anna School of Advanced Studies, Pisa

Social Structures

ReCreating Europe Logo

Today more than ever, digital technologies are revolutionizing the ways we express our creativity, access culture, information, and knowledge. Technology and, in particular, the Internet have the potential to bring an unprecedented democratization of our practices related to both the production and consumption of music, literature, news, movies, and so many other intellectual and artistic works. However, the reality still presents considerable uncertainties and profound inequalities: among the main obstacles to a sound democratization of creative and cultural processes are the complexity and obsolescence of laws and norms involved, the lack of awareness thereof, and a growing digital divide.

Copyright law is a fundamental building block in this shift towards digital creativity and digital access to culture. By protecting the creators’ exclusive rights to exploit their works and regulating the limits of such protection, copyright law essentially aims at striking a balance between the safeguard of creators and investors, on the one side, and end-users’ interests, on the other. The discipline boasts a long-standing European history, having started interacting and regulating the “offline” creative world over three centuries ago. The entry into the scene of digital technologies represents a significant disruption in the EU and national copyright legal frameworks as well as an opportunity to modernize the law.

Let’s talk about non-verbal communication

Stories/Lived Experience

Click here for Audio Version

Authors: Shauna Louise Byrne, Sales Assistant, studying Sign Language and QQI Level 5 Medical Terminology & Kimberly Wright, Postgraduate LLM student Global Legal Studies

Shauna Louise Byrne (LHS) Kimberly Wright (RHS)

“My name is Shauna Louise, and I was diagnosed with profound hearing loss at the age of 2. I contracted Scarlet Fever and have since lost 100 per cent of my ability to hear high frequency sounds. Throughout childhood, my teenage years and continuing into adulthood, my only form of communication is lip-reading.

The pandemic has highlighted just how much I rely on lip-reading as a primary method of communication in addition to the struggle of those around me to accommodate me by removing their face masks. Although, many deemed this as high-risk and left me feeling extremely isolated in my social and work life, resulting in me feeling as though I was a burden to those around me.

Consequently, I feel no other choice but to remove myself from social gatherings while it is required to wear a mask in public. The risk of asking someone to remove their masks when speaking to me isn’t a responsibility I want to bear. This goes as far as saying that I will only engage with people on video call as I can see their lips and it is safer, thereby lessening my physical social interactions where possible.

I have no shame in being Deaf and I embrace it as much as I can. I recently purchased hearing aids which allows me to pick up background noises. Furthermore, it has allowed me to connect to my phone where I can video call with ease, listen to music and has even allowed me to connect to my laptop so I can achieve my dream of completing an online course. This would have not been made possible without such hearing assistive technologies. Nevertheless, it does not provide me with the ability to communicate with others.

I think more awareness needs to be echoed in terms of accommodating those who are Deaf and hard of hearing. For instance, cinemas have their hearing aid loop signs to help those who wear hearing aids. I think all establishments should adopt similar strategies to allow those who are Deaf to have access to different ways of communication. In addition, I strongly believe that sign language should be provided as an optional language alongside Spanish, French, German, and others. It gives the opportunity to enable everyone to engage in a form of communication between the hearing world and the Deaf world” –Shauna Louise Byrne.

Shauna’s experience has prompted me to reflect on the rights of persons with disabilities, and on the need to value their diversity.

Including Patients and the Public in Research

Stories/Lived Experience

Author: Jamie Howell; PhD researcher, Department of Psychology, Maynooth University

Animation, 6 people on a blue background 3 healthcare practitioners 2 elderly people 1 person in a wheelchair and a female. — BioMed Central-

In recent years, health researchers have begun to embrace the concept of patient and public involvement (PPI). Rather than conducting research on or for various populations, we have begun to move towards working with patients and the public by prioritizing their needs and concerns. This allows researchers to learn from those who have lived experience and can help them design research projects which are more beneficial to the population being researched.

I first heard of PPI during my MSc, when my supervisor, Dr Rebecca Maguire encouraged me to include aspects of PPI in my research. Dr Maguire has worked as both a researcher and as a patient advocate, and her expertise has been invaluable to my own research.

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