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ILMI eBulletin 24th September 2018

Welcome to the 24th ILMI eBulletin.
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Updates from ILMI


Photos from the Launch

Updates from ILMI

The launch

Saturday was an historic day as we launched Independent Living Movement Ireland (ILMI) and our new three-year strategic plan at our conference “Building a Movement for Change: Working together to fight for disabled people's human rights in the 21st Century”. Members back in July voted for CIL as an organisation to trade as Independent Living Movement Ireland to reflect our ambition to grow as national, grassroots-led organisation representing disabled people.

ILMI’s vision is an Ireland where disabled people have freedom, choice and control over all aspects of their lives and can fully participate in an inclusive society as equals. Our mission is working collectively to create an independent living Movement in Ireland which is led by disabled people and promotes a rights-based social model of disability, challenging the unacceptable charity / medical model of disability. We are working towards the removal of societal barriers that prevent active equal participation of disabled people, challenging the denial of people’s rights and the promotion of the philosophy of independent living.
Our core values are underpinned by the philosophy of Independent Living and all activities are aimed towards promoting:
•             Independence
•             Options
•             Rights
•             Empowerment

There was a fantastic turn out for our conference and those present (or those who followed it live on Facebook) were treated to a fascinating panel discussion with Rosaleen McDonagh, Leigh Gath and James Casey, with Dermot Hayes as MC. The discussion focussed on the real benefits of collective action to bring about change, and I think we all left the room energised by the possibilities.

On behalf of ILMI I want to thank the panellists and MC for their wit, wisdom, passion and insight into the benefits of working as a collective for disabled people’s rights. I want to thank all those who attended or participated via Facebook in generating a discussion on building a Movement for change. The energy in the room tells us that there is a real appetite for disabled people to come together to collectively campaign for the their human rights and it is important that we capitalise on that energy and momentum and build a real Movement for Independent Living.  

Saturday was about embarking on a new journey as ILMI based on the successful legacy of CIL. WE have a new name, logo, strategic plan  and website  and our approach will be based on ensuring that disabled people across the Island of Ireland are active participants in the work we are going to carry out. In order to bring about the change we need to see in society, we need a collective that is based on active participation and a sense of ownership for disabled people.

Our commitment to creating ways for people to become involved is not only based on Saturday, but our regional training workshops on activism and collective political campaigning. Training has taken place in Cork, Galway, Letterkenny and Leitrim, and will take place on Wednesday in Dublin (email to book your place!!)

I would like to thank members, board and staff for their hard work in making Saturday’s launch and conference such a success. I would also like to thank Minister Finian McGrath TD for taking his time to be with us on such an important day and launching our organisation and strategic plan.

Saturday was only the beginning of ILMI. In order that we achieve the objectives of our strategic plan, we need as many disabled people from across the island of Ireland actively involved in organised strategic campaigns. I believe change is possible once we are mobilised and organised. I look forward to working with members from across the country to make change become a reality.
Damien Walshe CEO ILMI


Photo of James Casey

"Saturday the 22nd of September was a good day. It was a good day because many people made it to Dublin. It was a good day seeing so many young disabled people and older disabled people and even, yeah, it was a good day for middle aged oul fellas like myself. It was good day to hear people’s opinions and experiences and thoughts and feelings and it was a good day to hear them coming from you – disabled people. This is what it is about – it is about us, disabled people. And we have had enough of this thin veneer of equality. We have had enough of the things done in our name, but never for our good – the 10km walks, the church collections, the research projects funding and, please Christ, enough of the little metal Angel badge yokes. We have had enough of the bullshit.

Excuse my language, but that is what it is, bullshit. It is bullshit to wait five years for a new wheelchair or walking aid, it is bullshit that the audio on public transport is bad, it’s bullshit that we are threatened with PA cutbacks by overly dressed, and very well paid, ‘disability charity sector’ staff . Its bullshit to try again and again for a job and be told that it is a ‘health and safety’ issue when you get the rejection letters or that there are two steps down to the accessible jacks in a pub. So, how then does all this inequality happen in a society that appears to be a society if equals? It is because we are not equal. Disabled people are resilient and adaptable. Disabled people in this country are mothers, fathers, sons, daughters, lovers, haters, winners, losers, assholes, and a myriad of other things – but we are not, by any stretch of the imagination, equals.

So, what do we do? We do what we have been doing, what we always have been doing, but this time it cannot be ignored. Send the emails and letters, tell the bar staff that is not OK to have steps into the wheelchair toilets, put it on social media, call the local radio, email the TDs, call out the service providers on their hyperbole (bullshit), keep on doing what you have been doing – but do it bigger, do it more often and do it loudly, but do not give up, never give up. Why should we be unequal? Why should we see finances meant for our benefit wasted again and again on company cars and inflated wages? No. We demand equality, and by hook or crook (or the occasional bad word thrown at the marketing demons behind the metal Angel charity pins), we will get it. But remember, never give up, never stop, and to (misquote) quote Margret Atwood, the writer, never let the bastards grind you down."

James Casey

Photo of Suzi O'Toole

"For years, disability to me was a word saying ‘your different’, which when you’re in secondary school is the worst term you’ll ever hear. You miss out on certain things, experience being the centre of attention: both on the academic faculty side, speaking highly of your courage to face the day, and usually being the punchline of a joke by other students, when really all you want is to be left alone.

It wasn’t until college that I realized disability did mean being different but there was no shame in it. The whole status quo in school like the cool kids, sporty kids, smart kids etc, doesn’t exist in college for one simple reason: nobody cares. College life is so much more diverse, that socially it is much easier to fit in. Having said that, I do believe having a disability or being a wheelchair user, have many more physical obstacles and challenges.

 I came to a conclusion that everyone has their own issues in life, whether it being physical, mental, emotional, financial, racial, etc. My attitude towards having a disability is simple: if you want something to change, change it, don’t wait around for someone else to do it. I do believe in fighting for equality, but I also see what little rights those in the third world countries have, which helps put things in perspective. 

In truth I’ve never been to a CIL meeting before, so I wasn’t sure what to expect. It sure wasn’t just a room packed with wheelchair users, who the majority of them were like myself straight out of college. Many interesting points were raised especially about inaccessible work buildings. Although I do love Ireland but in that moment I really did feel like we are being treated like second class citizens, due to a disability. I can’t comprehend that, these are intelligent people with degrees, masters, and doctorates who willingly want to work and pay their taxes but can’t because we don’t wanna embrace the 21st century. Cause that makes loads of sense!!

My wish now is for more buildings, specifically work buildings to become accessible. I think that’s a fair request. All we want is the opportunity to pursue a career without our disability being a limitation. The one thing I did take from the meeting is there is strength in numbers, and my god there’s a lot of fun us. I’m conclusion, I can honestly say our voices will not be silent. Watch out government of Ireland, as the fight is coming!"
Suzi O’Toole

Photo of Desmond Kenny

"I am confident that Saturday’s launch of ILMI in the Spencer Hotel, Dublin, will come to be marked down as one of those seminal moments in the progressive evolution of a rights based movement of persons with disabilities.  I heard old and new issues presented and spoken to with passion and reasoned disgust from existing and potential new activists who promise so much through this new movement of reinvigorated activism.
Our right to enjoy a supported individuality in life style and citizenship continues to be the old battle ground where our limitations from lack of PA services, inaccessible places and services and imprisonment in nursing homes will be addressed in new battles to be fought.  What I also heard voiced was that service provider agencies may have to be named and shamed as impeding our individuality by representing us as a funding collective that compromises the quality of what we receive from them in there imperatives for agency survival.  Taking back control of agencies in our sector will also form an essential part of being heard speaking for ourselves without the mediation of services and supports which are coming to damage us more and more, not least by how the charitable, public representation of us is magnifying us into an imagery of helplessness that needs specific solutions from disability service bodies to remedy.
The new activism will be aided by our use of the articles of the UNCRPD, and a number of EU Directives being assimilated into our policies on disability, information and transport.  What will have to be guarded against is that the representation of persons with disabilities on to review committees or bodies may be only at a level of 50% representation with the other 50% being reserved to agencies who are perceived to speak on behalf of people unable (even with support) to represent their own needs."

Desmond Kenny

Photo of Alannah Murray

"Becoming an activist wasn't really a choice, more just a natural progression as I got older and angrier about the issues I was faced with. My main gripe was transport and how I wasn't able to be spontaneous, and how I had very little bodily autonomy. As a disabled person in an Ireland where women's rights and disabled rights intersected in a lot of ways; I became vocal in the fight for pregnant people's bodily autonomy during the repeal the 8th campaign. I related to not having control of my own body because disabled bodies are always treated as something other than our own. So everything really flowed in to one, and that's how Disabled Women Ireland was born.

Working towards an equal playing field for all is something that's very important to me, in an age where people my age in particular are becoming more and more engaged with the Ireland we are faced with.
My hope for the future is that disability becomes so acceptable in society that we won't have to fight for things anymore. That all social spaces are accessible, that we have bodily autonomy in every aspect of our lives; that we can be whatever we want to be, go wherever we want to go. I want it to be so visible that it becomes invisible; that having a disability is no longer part of people's view of who I am as a person, that it's irrelevant.  Women's rights are disabled rights and disabled rights are women's rights.

The launch of a movement like ILMI really reminded me of what's important why I first joined the fight in the first place; a group of likeminded people who are ready to take over. Who take ownership of their own journeys and their own experiences as human beings; a group of people who aren't taking able bodied people's shit anymore.
Viva la resistance!"

Alannah Murray

Photo family selfie

"The much awaited rebirth of the organisation formerly known as Center for Independent Living Ireland, henceforth to be known as Independent Living Movement Ireland (ILMI) took place in The Spencer Hotel Dublin on Saturday, 22 September. The new Strategic Plan 2019-22 was also launched, which aims to build on the new energy and passion that has been emerging in the Independent Living community since the ‘In Their Names in Our Times’ event, which was held in the Mansion House on the same weekend last year.

The meeting room was full to capacity with both new and familiar faces, excited by the prospect of change and moving forward. Firstly, Minister with Responsibility for Disability Finian McGrath TD, was invited to officially launch the strategic plan by Chairperson Shelly Gaynor. In his speech, Finian acknowledged ILMI as a grassroots organisation and stated that ILMI’s strategic objectives were similar to his own as Minister. ‘It is so important to raise the expectations of decision makers and policy makers as to what can be achieved,’ he said. ‘I will never accept the status quo until everyone is treated equal.’ He added: ‘The ILMI is a fantastic example of a DPO – an organisation ran by and for people with disabilities.’ Finian also praised the work of the Minister for Transport establishment of the Transport Committee and acknowledged that there was no substitute for the lived experience.

Afterwards, ILMI Board Member Dermot Hayes ably chaired a panel discussion comprised of a selection of expert disability activists: Leigh Gath, James Casey and Rosaleen McDonagh. All three activists shared their stories about their journey to activism. One of the key points that arose from this discussion is that Home Help Services have not been funded separately from Personal Assistance, and that we need to redefine what a P.A. service is in accordance with the Independent Living Philosophy. It was an extremely interactive discussion, and the strongest message that came from the discussion is that disabled people need to be more vocal in their quest to be recognised as the experts in their own lives. Another key message was that every single one of our voices matter, whether you’re new to the Independent Living Movement or an experienced activist.

From my own perspective, both as a member and a board member of the newly established ILMI, this event was a great success. It was so good to see people who had never met before coming together in supportive solidarity and getting to know each other. I know I will always remember the history and achievements within the Independent Living Movement as I look forward to the bright future of Independent Living Movement Ireland."

Sarah Fitzgerald

*This blog and the other blogs are personal views expressed by the writers and do not necessarily represent the views of the Board of ILMI.

Independent Living: A Right Not a Privilege Seminar September 28th, Temple Gate Hotel Ennis

On Friday the 28th of September the Clare Leader Forum in partnership with the Clare Citizens Information Center and the Center for Independent Living will host a seminar on the future of Personal Assistance Services (PAS).

The seminar Independent Living: A Right Not a Privilege, will particularly focus on the Direct Payments Model and draw on a host of speakers including individuals with the lived experience of directing their own services. The Clare Leader Forum are delighted to welcome Senator Martin Conway and a senior HSE representative, who will also provide a national picture on the current status of PAS.

Dermot Hayes of the Clare Leader Forum explains why hosting this seminar was considered so important “The days of gratefully receiving any Personal Assistance Service hours that we could should be long in the past. We should have a right to the very services that allow us to live our lives. Sadly for some of us our service provider dictates the minuscule details of our daily lives, increasing our dependence and moving us further away from the freedom to live in the manner in which we choose. However, what many of us don’t realise is that we have real options when it comes to how our Personal Assistance Services are delivered. The movement towards Personalised Budgets and Direct Payments is changing the way in which PAS are delivered. Our Seminar on September 28th will highlight how these models really work and how Independent Living can be a reality for us all”.

The free event is open to all disabled people and those with an interest in Independent Living. Registration will take place from 9.30am with the seminar starting at 10am in the Temple Gate Hotel, Ennis. Further information can be obtained by calling Susan on 086 1712648


Photos from the Launch

Independent Living Movement Ireland launches as new Disabled Person’s Organisation campaigning for freedom, choice and control for disabled people in Ireland


Today (Saturday 22nd 2018) Minister of State for Disability Issues Finian McGrath TD formally launched Independent Living Movement Ireland (ILMI) and its new three year strategic plan in the Spencer Hotel at their conference “Building a Movement for Change: Working together to fight for disabled people's human rights in the 21st Century”.


“Central to disabled people achieving equality and having their human rights protected is the principle “Nothing About Us Without Us”. Independent Living Movement Ireland is about building a collective, grassroots organisation across the island of Ireland to be the voice of disabled people in the development of policies and practices lived on the lived experience of disabled people. We are the experts in our own lives, we know what needs to change and in ILMI, we will build an organisation that empowers disabled people to collectively lobby and campaign for that change” said Shelly Gaynor, Chair of ILMI.  Link for full PR

Michelle Gaynor

Maggie Woods, Suzi O'Toole Sean O'Kelly

Damien O'Reilly his PA and Rosaleen McDonagh

Aoife McNicholl

Dermot Hayes

Eileen Daly Saoirse Smith

Gordon Ryan

Katie Bourke Alannah Murray

Dermot Hayes, Leigh Gath, Minister Finian McGrath

James Cawley, Ally Kiernan, Shelly Gaynor Lizzie and Audrey Brodigan.




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