Author: James Cawley, Policy Officer, Independent Living Movement Ireland (ILMI)
James Cawley
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 3rd 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).
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?
Author: Mac MacLachlan, Assisting Living and Learning (ALL) Institute, Maynooth University
Mac MacLachlan
Different models of disability understand disability in different ways. The medical model associates disability with illness, deficit or disorder; and with the limitations these impose on individuals. The social model sees disability, not as a personal attribute but as the experience people have of barriers to their participation in society. The human rights model recognises both social barriers to participation and personal experience (for instance chronic pain) independent of barriers; and it asserts people’s rights to overcome barriers and access services to fulfil their right to fully participate in society. The United Nations Convention on the Rights of Persons with Disabilities (CRPD, 2006) embraces the social- and human rights-based models and obliges States that have ratified it – Ireland did in 2018 – to provide the necessary services and supports for its implementation.
Author: Léa Urzel – PhD Researcher ERC Project DANCING, ALL Institute – Department of Law, Maynooth University
Léa Urzel
Today, 23 September 2021, marks the fourth celebration of the International Day of Sign Languages. Currently, Covid-19 continues to affect the lives of people around the world. The ongoing pandemic has posed unprecedented challenges for all, including persons with disabilities. It has further exacerbated the barriers that Deaf people and other sign language users face in their daily lives and highlighted the difficulties encountered in accessing services and information, notably health services and public health information (Panko et al, 2021). At the same time, it has also enhanced the use of national sign languages in public broadcasting as numerous press conferences, public health briefings and other speeches by government officials continue to be broadcast featuring sign language interpretation.
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
The Council of Europe (2020) recalls that the word ‘Democracy’ ‘comes from the Greek words “demos“, meaning people, and “kratos“, meaning power; so democracy can be thought of as “power of the people”: a way of governing which depends upon the will of the people’.
Theories and models of democracy and ‘popular governance’ have manifested in innumerate social models and national socio-political dispositions of rule over millennia since the beginnings of ‘Athenian Democracy’ in the 5th Century BCE. The Greek Directorate of International Relations and European Union of the Hellenic Ministry of Culture and Sports (2020) provides the following synopsis of the origins of democratic rule that is cherished as part of the underpinning ethos of the favoured model of governance by the modern political establishment within the context of the socio-political order of the European Union (EU) of today: ‘Humans as autonomous entities in the context of organized society, the respect for their personality, freedoms and rights, were fundamental topics in the ancient Greek thought. From the Elegies of Solon (c. 630-560 BC) to the Democracy and Laws of Plato (428/7-348/7), the Politics of Aristotle (384-323/2 BC) and Demosthenes’ fiery speeches (384-323 / 2 BC), the ideas of justice, rule of law, decency, education, virtue and free thought stand out as key ingredients for the ideal regime’.
‘The mainstreaming of the rights of older persons with disabilities into all disability and ageing-related policies and programmes is key to ensure that the concerns and needs of older persons with disabilities are adequately addressed’.
However, older persons with disabilities face an intersectional form of discrimination within the European Union (EU), which derives from the intersection of ‘ableism’ and ‘ageism’. People within the EU are now living longer than ever before, with 101.1 million people aged 65 or over residing within the EU-27 in early 2018. Close to half of all persons over the age of 65 in the EU have some form of disability. Incidences of disability in old age, especially acquired disability, increase substantially amongst individuals in older age categories and, as a result, older persons with disabilities are at increased risk of neglect, loss of supports, abuse and poverty, amongst other risks.
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.
Authors: Dr. Emma Smith, Postdoctoral Researcher, AT2030, ALL Institute, Department of Psychology, Maynooth University and Ana Geppert, Masters student of Global Health at VU Amsterdam, intern with the ALL Institute at Maynooth University, in partnership with Loughborough University.
In celebration of the launch of the #WeThe15 campaign; the largest ever global human rights campaign to increase awareness and social inclusion of people with disabilities through sport, we would like to share some of our recent research in the area. #WeThe15 is an acknowledgement that at least 15% of the world population – over 1 billion people – live with one or more disabilities, each of whom is entitled to all of the rights and freedoms, and the benefits of social inclusion experienced by people without disabilities worldwide. Of those rights affirmed in the UN Convention on the Rights of Persons with Disabilities, Participation in cultural life, recreation, leisure, and sport (Article 30) is one that we have had a recent focus on in our work.
Author: Francesca Albi, J.D. Candidate – Università degli Studi di Verona (Italy)
Francesca Albi Profile Picture
Accessibility is one of the general principles embodied in the United Nations Convention on the Rights of Persons with Disabilities (CRPD) and it is explicitly affirmed by Article 3 (f), Article 9 and other provisions of the Convention. Accessibility must be understood as “the right to use goods, services and facilities available to the public without discrimination, and obtain an equal benefit from them” (Broderick and Ferri, 2019, p. 140). Accordingly, accessibility is strictly linked to the concept of “universal design”, which is an expression of the paradigm-shift embraced by the CRPD (Cera, 2017, pp. 107-118) and which is defined in Article 2 of the CRPD as the “design of products, environments, programmes and services to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design”.
Addressing the topic of sexuality and disability means uncovering issues capable of questioning our stereotypes, our bodies, the construction of our desires, and our ideas on desirability. Sexuality is an issue that touches the core of our relational selves, of our identities as persons. Anne Finger, a prominent writer, and disability activist, defined sexuality for people with disabilities as “the source of our deepest oppression; (…) the source of our deepest pain.” (Finger, 1992).
In a post published on this blog, while discussing sexuality and disability from a psychological/social perspective, Mohamed Maalim used the expression “loud silence”. I was deeply moved by these words, as the same loud silence dominates the legal sphere of sexuality and disability as well.
This short post has the purpose of engaging in an interdisciplinary dialogue, to better understand how, from different perspectives, scholars, activists, and professionals can create a positive approach to and constructive debate on people with disabilities’ sexualities.
Author: Clíona de Bhailís is a PhD Candidate at the Centre for Disability Law and Policy (CDLP), NUI Galway. She has received Irish Research Council funding for her research focusing on Article 12 UNCRPD and young people with disabilities. In her previous role she worked as a Research Assistant on the European Research Council funded ‘Voices of Individuals: Collectively Exploring Self-determination (VOICES)’ project.
Clíona de Bhailís
In 2021 World Youth Skills Day celebrates the creativity and resilience of youth during the COVID 19 pandemic. Young people with disabilities have been particularly impacted by the crisis with schools and services closed, supports limited, and reopening creating additional barriers in accessing many public spaces. Through it all however, they have shown remarkable creativity, resilience and adaptability. This is despite not being consulted or at times even considered by decision makers.
The importance of participation in decision making is often mentioned when discussing research and policy which relates to children and young people. Article 12 of the UN Convention on the Rights of the Child (UNCRC) is well known in this regard and guarantees children who are ‘capable of forming a view’ the right to express their views on matters which affect them. Their views must then be given due weight based on the child’s age and maturity. The applicability of this right to children with disabilities is reinforced by Article 7 of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) with two notable differences. These are the absence of the requirement for a child to be ‘capable of forming a view’ and an obligation on States Parties to provide ‘disability and age appropriate assistance’ to support disabled children and young people to express those views. Therefore, all children and young people, regardless of cognitive ability, should be allowed to express their views on matters affecting them, their views should be given due weight and they should have access to the support if necessary. Further, General Comment No. 7 of the UNCRPD clearly outlines that States Parties have a duty to consult with children and young people with disabilities and their representative organisations about policy development and the implementation of the Convention.
Author: Mohamed Maalim – PhD Researcher, of the ALL Institute, Department of Psychology, Maynooth University
Mohamed Maalim
11th of July is celebrated as World Population day to highlight global issues on sexual and reproductive health and rights gender equality and the right to family life. Personally, as a husband and father to five children, am blessed and privileged to be able to exercise this fundamental human right to family life and family unity as enshrined in international and European human rights provisions. Many people, however, including people with disabilities, refugees, and others requiring international protection do not enjoy the right to adequate sexual and reproductive health in particular.
In this piece, I will discuss sexuality issues for people with disabilities from the perspectives of personal understanding and professional practice both as a research student and a registered Occupational Therapist. From an Occupational Therapy point of view, sexuality is considered an activity of daily living (ADL) by the American Association of Occupational Therapists. Occupational therapists may include sexuality as part of a routine evaluation of clients and address this area in occupational therapy interventions. Sexual activity and intimate social participation are part of meaningful occupational participation contributing to personal satisfaction while sharing intimate relationships may potentially impact one’s wellbeing and quality of life. Sexuality should not be misconstrued to mean only physical intimacy but as a holistic concept encompassing sexual activity, decisions, communication, identity, and choice.
Author: Francesca Albi, J.D. Candidate – Università degli Studi di Verona (Italy)
Francesca Albi
Persons with disabilities represent human diversity and their inherent dignity must be recognised. In legal terms, the protection of human dignity is linked to the recognition and respect of the right to legal capacity, which is established by Article 12 of the UN Convention on the Rights of Persons with Disabilities (CRPD). According to this provision, persons with disabilities have the right to legally act on an equal basis with others. Even though they may need support and reasonable accommodations, disability cannot be used to justify the denial of the right of persons with disabilities to make their own choices concerning their lives. To this aim, supported (and not substituted) decision-making mechanisms must be provided to help them in decision-making processes.
Since international mobility of adults (including those with disabilities) is an increasing phenomenon in the contemporary globalized world, international human rights instruments acquire special relevance regarding the exercise of civil rights in transnational situations. In that connection private international law, which has been defined as ‘the body of conventions, model laws, national laws, legal guides, and other documents and instruments that regulate private relationships across national borders’, must be read in conjunction with international human rights norms. To this end, legal scholars (Franzina, 2012; Franzina, 2015; Franzina and Long, 2016, 106-177; Franzina, 2019; Long, 2013) who investigate the transnational protection of the rights of adults with disabilities speak of “integral approach” to identify the mutual influence of international human rights and private international law.
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: Nicola Posteraro, Qualified Italian Lawyer, Post-Doctoral Research fellow in Administrative Law, University of Milan, Qualified as Associate Professor of Administrative Law
Social Structures
Dr Nicola Posteraro
According to data compiled by the National Association of Workers with health conditions or impairments (ANMIL), there are cities in Italy where people with disabilities can live their life and exercise their free movement right on an equal basis with others, and other cities that are still very hostile. Accessibility interventions, when undertaken, are often inadequate. This is due to the lack or limitation of public funding available, and to the regulatory fragmentation, which certainly does not help those who have to apply the legal provisions on accessibility. Not all residents are able to have equal access to the services of the city, to participate in municipal decision-making processes and to benefit from the economic growth of the city. This is a problem that negatively impacts on the fundamental right to health of people with disabilities: in fact, being able to access places and public facilities allows mobility and amplifies the network of social relations. While the data above concerns Italy, a similar situation can be found in many other countries.
Author: Mohamed Maalim – PhD Researcher, of the ALL Institute, Department of Psychology, Maynooth University
The Zero Discrimination day is celebrated annually on the 1st day of March, to reflect on our rich human diversity and the need for equal opportunity to enjoy fundamental human rights, and to fight against discrimination in all its forms and manifestations. This year, above all previous, the ongoing global COVID-19 Pandemic with all its disruptive nature and the misfortune it has brought and caused, has also offered humanity a glimpse of its ‘non-discrimination’ attribute. The advent of COVID-19 reinforced upon us that we are all equal as humans in our susceptibility, our fear and concern for self and others, and indeed in our hope of getting back to as ‘normal life’ as possible or whatever that ‘normal’ means.
Additionally, with Covid-19, we have adopted a common enemy enforcing upon us an almost military-type operation to fight back. The nations of the world in an unprecedented fashion formed ‘NATO’ type alliances and collaborative networks with the ‘Big Tech’ and ‘Big Pharma’ in a concerted effort to develop digital contact tracing and tracking apps‘ and vaccines, respectively. Individual governments assumed the role of commanding officers alongside senior health personnel, frontline healthcare workers, and other so called ‘essential’ workers as the foot soldiers of the operation, while the general public’s hearts and minds were won by calls to stay at home to suppress the virus.
The World Braille Day: Celebrating the Importance of Braille for the Full Realization of Human Rights of Persons with Disabilities – in Maynooth University, Ireland. Voiced by Hilary Hooks.
Authors: Deirdre Desmond, Delia Ferri and Mac MacLachlan; ALL Institute Co-Directors
Deirdre Desmond, Mac MacLachlan and Delia Ferri, ALL Institute Co-Directors
“Life is not a series of gig lamps symmetrically arranged; life is a luminous halo, a semi-transparent envelope surrounding us from the beginning of consciousness to the end” Virginia Wolf, ‘Modern Fiction’, 1921.
2020 was certainly a difficult year for many of us, both on personal and work levels, and, despite these challenges, it is noteworthy that the work of the ALL Institute has not only proceeded, but also the commencement of several research projects ensure that we will continue to contribute in many respects to the building of a fairer society. In the past three years, and more so in 2020, we have endeavoured to reach out to different communities and stakeholders at the local, European and global levels. We also launched this blog on the 3rd December 2020, a particularly significant date, the International Day of Persons with Disabilities, to signal our commitment towards inclusion and equality.
