Stories/Lived Experience
Author: James Cawley, Policy Officer, Independent Living Movement Ireland
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).
We are led by and for disabled people and we promote the philosophy of independent living and seek to build an inclusive society. Central to the way we work is to ensure that policy decisions that impact on the lives of disabled people have to be directly influenced by those whose lives are directly affected.
Our philosophy can be summed up as: ‘Nothing about us without us!’ and ‘Rights Not Charity’ – simply asking for disabled people to be consulted and engaged with as per Articles 4.3 and 29 B of the UNCRPD, recognising us as contributing members of society. For far too long in Ireland disabled people have been talked about and not talked to.
It is vital to involve disabled people in all conversations going forward, and at all levels; local, regional national, European, and International.
Article 19 of the UNCRPD (Independent Living) recognises that disabled people have the right to live in, be part of, and use services and amenities in their communities. They should choose where and with whom they live with having appropriate and adequate supports. Independent Living is about having the freedom to have the same choices that everyone else has in housing, transportation, education and employment. Independent living is about choosing what aspects of social, economic, and political life people want to participate in. Independent living is about having control over your life, to have a family, to get a job, to participate socially and to realise your goals and dreams. Independent Living is about linking the independent living jigsaw pieces together and quite often for many disabled people, Independent Living can best be achieved by the employment of Personal Assistants to provide supports where needed or assistive technology or whatever supports are appropriate and adequate for them to live a life of their choosing.
Traditionally, in Ireland, disability has been “medicalised”. By contrast, at ILMI we view disability from the Social model of disability perspective. We believe it is the inaccessible policies, structures, inaccessible housing, and inaccessible transport systems for example that “disable” us. Independent Living Movement Ireland recognises that language is a very powerful and evocative tool. Therefore, the language and terminology we use has been carefully chosen to reflect the values of equality and empowerment which at the core of our organisation. The term ‘disabled people’ is used throughout all our written submissions and key policy documents in accordance with the UPIAS classification of disability and impairment which has been developed by disabled people themselves (UPIAS 1976).
Covid 19 has presented us all with challenges and ILMI has recognised these challenges for disabled people throughout Ireland. Contrary to the general narrative, many disabled people have found positives in how the country responded collectively to the challenges we all faced during the Covid-19 pandemic, and specifically how disabled people responded creatively to build connections and work in different ways to reduce social isolation by building online communities via technologies, such as Zoom. ILMI online spaces included a mixture of peer support and platforms to discuss policy, activism and even creative spaces, such as a film club, as well as county-specific discussion spaces through our ONSIDE project for disabled people in Donegal, Leitrim, Sligo, Monaghan, Cavan and thereafter ILMI spaces were created in Clare Longford, Offaly, Laois and Cork. We hosted weekly workshops on topics such as mindfulness, yoga, nutrition, independent living, effectively managing a Personal Assistance Service (PAS), photography and drawing and lots, lots more. Most recently we hosted an online music gig “Ceol 21” with hundreds of disabled people across Ireland Zooming in to hear some very talented Irish artists. This gig connected and uplifted people through the powers of music and technology! Our spaces have allowed hundreds of disabled people to access online training and social spaces to get to know other disabled people, build social networks and learn from each other as peers. However, while Zoom and other technologies have provided “connections” to people over the pandemic, to participate people need to have the hardware and broadband to do so. Not everyone has access to resources such as these. Also, moving forward remote working should not be seen as the only option for disabled people to work. Disabled people should have the same choices in education and employment as their non-disabled peers.
Most recently, ILMI welcomed Minister Rabbitte’s announcement on the publication of Ireland’s first report to the UN under the UNCRPD. As a national disabled person’s organisation (DPO) we were extremely well placed to make an authentic written submission to the state report. ILMI conducted 10 consultations throughout February and March 2021 online, to bring disabled people together from across the country.
Consultation spaces covered; Disabled women and young girls (Article 6), Children and young disabled people (Article 7), Access, mobility, and access to information (Articles 9, 20 and 21), Independent living (Article 19), Disabled people and family life (Article 23), Disabled people and education (article 24), Disabled people and health (Article 25), Work and employment (Article 27) and Participation of disabled people in political and public life (Article 29) and emotional distress. Read our full submission here
On the whole, ILMI has a vision for an Ireland where disabled persons have freedom, choice, and control over all aspects of their lives and that we can fully participate in an inclusive society as equals.
For further information on ILMI or any of their submissions contact James Cawley on: jamescawley@ilmi.ie or to sign up to their ebulletin by emailing info@ilmi.ie
ILMI also did a series of podcasts and videos from activists from across the country.