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.
Author: Evelyn Soye, Research Assistant with the SHAPES Project (Department of Law and ALL Institute at Maynooth University)
SHAPES: Smart and Healthy Ageing through People Engaging in supportive Systems Logo.
According to European Commission’s Report on the Impact of Demographic Change, people aged over 65 account for the majority of the 50 million EU citizens who suffer from two or more chronic conditions. Meanwhile, it is estimated that demographic ageing in Europe will mean that the number of people aged 65 years and over will increase to almost 130 million by 2050. Therefore, although Europeans are living longer, increased lifespans can be associated with declining health and a greater prevalence of chronic disease and physical and cognitive impairments (UN Special Rapporteur on the Rights of Persons with Disabilities, 2019).
SHAPES (Smart and Healthy Ageing through People Engaging in Supportive Systems) is an EU funded project working to develop a pan-European online platform that will provide a range of supports to older persons to facilitate their continued healthy and independent living. The project brings together thirty-six partner organisations and research institutions, across fourteen European countries, with expertise in health, social sciences, IT development, robotics, healthcare, care service provision and advocacy. Under the supervision of Prof. Delia Ferri, Co-Director of the ALL Institute, my role within SHAPES involves researching the relevant EU legal framework and investigating the extent to which it can best support the provision of inclusive, integrated health and care services.
Author: Kimberly Wright, Postgraduate LLM student Global Legal Studies
Kimberly Wright
One of the main reasons I decided to pursue a Master’s Degree in Global Legal Studies after completing my Bachelor’s in Law was to obtain a better understanding of the global legal system in the hopes of one day working for an international organization, as well as to apply for a placement to gain practical experience in a reputable organization. From February to May of this year, I had the privilege of interning with Assisting Living and Learning (ALL) Institute.
My first day with the ALL Institute I was incredibly nervous as I had no previous experience working in this field and it was completely different from what I was accustomed to. However, upon meeting the co-directors and their administrative lead for the first time, I was warmly welcomed and immediately put at ease.
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.
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
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.
Author: Jamie Howell; PhD researcher, Department of Psychology, Maynooth University
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.
Author: Kathleen Cunningham, Undergraduate Arts Student at Maynooth University
I am a first year Undergraduate Arts Student at Maynooth University, studying English, Sociology, Psychology and Law.
Last year I completed the Turn to Teaching programme at Maynooth, on the Foundation Certificate in the Initial Teacher Education course. During this programme, I learned that my own lived experience in education gives me a beneficial skillset and great insight that I can bring back to a career in the field of education. On the Turn to Teaching (TTT) programme we also learned about key concepts affecting teaching in Ireland today. We learned ways in which the school experience can be improved for students of all backgrounds, especially for students coming from backgrounds similar to my own – from DEIS (Delivering Equality of Opportunity in Schools) designated schools, from the flats, from council estates.
Author: Dr. Emma Smith, Postdoctoral Researcher, AT2030, ALL Institute, Department of Psychology, Maynooth University
A few weeks ago, I was asked by a fellow volunteer, “Why do you do this?” My answer wasn’t eloquent and was far from complete. I talked about my passion for the cause (that seems to be a given). I spoke about having a skillset I felt I could contribute to help build community. I talked about getting more from the organizations I work with than I ever put in. However, as the weeks have passed, I’ve realized it’s deeper than that – not everyone with passion and a skillset contributes as a volunteer. They contribute to their communities in other ways – they go above and beyond in their work lives, they raise incredible kids who inspire a generation, and they are committed friends and family members.
Author: Delia Ferri, ALL Institute, Department of Law, Maynooth University
We have decided to include a new section in this blog that will gather emotions and insights into people’s real lives.
We will learn about people’s habits, ways of seeing and doing, perceptions, reactions to norms and power-relations. We will learn about life trajectories, transitions and transformations during the course of a lifetime. We will also learn about turning points – critical moments in which people change their directions – where they take another pathway. In some we will learn about the way in which social structures, social lives and social technologies impact on people’s every-day experiences, and shape their contexts and their opportunities.
Authors: Layla May and Deirdre Forde, ALL Institute, Maynooth University
This story was written by Layla May and supported by Deirdre Forde, who is a member of the ALL Institute, Maynooth University.
The lived experience piece authored by little Layla May aims to mark the World Diabetes Day, which is celebrated on 14th November every year. It also aims to raise awareness about children with diabetes and their experience.
What is Type 1 Diabetes?
Diabetes mellitus Type 1 (T1DM) is a chronic autoimmune condition in which the pancreas stops making the hormone insulin. Insulin helps control blood glucose levels and allows glucose (from carbohydrate in the diet) to move from the blood into body cells for energy. The brain uses glucose as fuel so low blood glucose levels are dangerous in the short term and if not recognised and treated can result in collapse and seizure. High blood sugars can lead to other complications for someone with diabetes.
