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ILMI eBulletin 11th March 2019

Welcome to the 34th ILMI eBulletin.
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Updates from ILMI

photo of ILMI member Dr James Casey


ILMI input at NUIG Centre for Disability Law & Policy LL.M. in International and Comparative Disability Law and Policy
ILMI member Dr James Casey (pictured) and ILMI CEO Damien Walshe were invited to discuss with students in International and Comparative Disability Law and Policy on ILMI’s role as a Disabled Person’s Organisation (DPO). Over the course of the discussion, ILMI’s approach in building a grassroots, collective based on disabled people’s experience was highlighted, including the development of our campaign on the Personal Assistance Service (#PASNOW), as well as our approaches in developing collective policy on housing, planning and transport.
Many thanks to the students for their engagement in the discussion and Dr Catriona Moloney, LLM Programme Director for the invitation to ILMI to contribute to the programme.

Photo of Shelly Gaynor ILMI Chairperson and David Joyce ICTU

ILMI brings the #PASNOW campaign to the Irish Congress of Trade Unions (ICTU)

On 14th February, ILMI Chair Shelly Gaynor and CEO Damien Walshe were invited to present the ILMI Personal Assistance Campaign #PASNOW at the Irish Congress of Trade Union (ICTU) Conference on disability and mental health in Belfast. Over the course of two presentations, ILMI met and discussed with delegates what Independent Living is, what the role of ILMI is as a DPO and how the Trade Union Movement can be an ally in supporting disabled people’s human rights, and specifically building support for the ILMI #PASNOW campaign.
ILMI would like to thank David Joyce and Clare Moore in supporting ILMI’s participation at the conference.

Photo: sketch of concept city street

ILMI Planning Group Update
The 2nd meeting of the ILMI planning group took place on Thursday 28th February. Building on discussions from the 1st meeting, ILMI is finalising a document outlining a collective, unified approach to bringing disabled people’s issues to planners. The next stage of the discussion will look at how to use this information to influence planning locally and nationally.
Our intention is to finalise the ILMI Principles of Minimum Requirements for Disabled People in Street Design to inform Local Authorities and we will develop supports on how they can be used locally. For more information, email our Policy Officer.


Photo of Seònaid Ó Murchadha

Bionic Woman Seònaid Ó Murchadha at TEDx TCD
My mouth is completely dry, my palms are sweaty – well, the real palm is! – and my heart is pounding out of my chest. I wonder am I actually having a heart attack or is it just the anxiety? Why do I agree to do these things when I get so nervous?
Waiting in the dark backstage at the Lir Academy, Ireland’s National Academy of Dramatic Art at Trinity College Dublin, I’m about to walk (very carefully and slowly) onto the stage and give a 20 minute speech to a bunch of strangers. Usually when I am discussing diversity and inclusion with disability in mind, I am preaching to the converted - I’ve been invited by HR managers involved in Diversity & Inclusion in large companies. But this audience today is quite different and I’m hopeful they will be responsive to my message.
The theme for this TEDx (x = independently organised TED event) Trinity College Dublin annual event is Autonomous - the antagonistic relationship between individual autonomous thought and the lofty ideals of social cooperation. They wanted the speakers to talk about the recent dramatic upheaval of the old social order, with the voices of women and minorities leading the push for social change through our own experiences, lives and work. Sounds way too serious for me to be invited to speak! And as a huge fan of TED talks, it seemed so overwhelming when I was asked.
I read an entire book about TED talks by Chris Anderson, Head of TED, instead of finishing my speech and nothing I wrote seemed good enough. I was freaking myself out completely! Then my rehearsal was pretty bad and I began to worry that my message would be lost - my nerves would get the better of me and people wouldn’t listen. I needed to use this opportunity to challenge the denial of people’s rights and highlight the huge barriers that prevent disabled people from living autonomous lives.
The story of the fire where I lost three of my limbs always grips people - I personally find it boring and difficult to talk about, all at once. It’s hard to remember one of my darkest times and I’ve told the story so many times it’s mind-numbing to retell it. But how else could I make non-disabled people understand the lack of freedom we so often experience?
Recreating the day of the accident and taking a deep breath, I get through the first bit without falling over or having a panic attack. Then I warm to my theme - the struggle for independence and fighting to live a life of my choosing. I tell them about being denied opportunities and applying for ten times more jobs than my peers without disabilities. I tell them about making all sorts of mistakes trying to disclose my needs at interviews.
Then the sucker punch - after all the hard work to finally get a job, my medical card is taken away and I realised that the Government would rather force me to stay at home than support me to work with my medical needs taken care of; I could never earn enough to pay for all my medical expenses. But I was lucky - I fought the law and sometimes I won!
I talk about working educating others about disability and encouraging them to employ disabled people. Sharing stories about the abilities of all the disabled people I’ve worked with and helped get job placements always changes opinions about disability - disability is innovation and creativity. They start to be able to see people’s abilities and how they could work in their organisations.
My last point is the most important - this year is our year. 2019 will be for disability what 2015 was for marriage equality. We need to gather allies to our cause. For the first time in history, disability was a topic on the main stage at the World Economic Forum summit in Davos. The current trend towards diversity hasn’t included us until now. Others are realising that disabled people have a huge amount to bring to society and business - heads of huge corporations are noticing that we have a spending power globally of $8 trillion and we need goods and services that meet our needs. We shouldn’t have to adapt. We all acquire disabilities as we age so why do we put up with an inaccessible world where we are not treated as equals? Let’s build an inclusive one together!
The crowd loved it and I slowly walked off to applause. Delighted!
So are YOU ready for the disability inclusion revolution!

Author Seònaid Ó Murchadha link for her TEDx  talk is here.


Photo of Grace Murphy

My Transition Year Work Experience week in ILMI
When I initially arrived at the gates of Carmichael house, ready on a bright, sunny Monday morning to start my Work Experience in the ILMI office, I didn’t really know what I should expect. Little did I know that I was about to spend my week in an incredibly fun, educational and productive way.
From meeting staff and members of the organisation to completing a range of interesting tasks, I was empowered and encouraged throughout my week of Work Experience to make an effort to use the supports that I have surrounding me more effectively as a way of being introduced to delegating tasks that I require to carry out in my daily life. The people I met during my week spent with ILMI made me realise that despite being born with a disability and needing assistance with various aspects of my life, I can still make choices, show preferences and allow myself to be independent. I really enjoyed participating in and being able to witness disabled people collaborating and discussing how they could inspire change and improvements in society together. I was very quickly reminded how easy it can be to find easy and simple solutions to challenges and barriers that arise in my life when talking to other people who find themselves in similar circumstances to me, who can empathise and understand the difficulties that can be posed in different situations. It was very interesting to see exactly how the fantastic and tireless work of this organisation can influence real impactful change on a governmental level.
This week has been so memorable, enjoyable and worthwhile. This short time period of just one week has taught me to raise my voice in the hope of ensuring useful and vital improvements for disabled people in Ireland. Finally, I would like to take the opportunity to extend my gratitude to all those who made my Work Experience such an unforgettable success.
Author Grace Murphy.

Dermot Hayes - Volunteer of the Year Awardee 2019
The Clare Leader Forum are immensely proud to share in the news that Dermot Hayes was awarded Volunteer of the Year Runner-Up at the Clare Community Awards on Thursday evening. Dermot was nominated for the award by the Forum due to his selflessness and generosity to the people of Clare.
Dermot emerged as runner-up in a category of six shortlisted candidates, which included Mike Rohan (Bunratty Local Development Association), Mags Keane (Carrigaholt Community), John Dunne (Clare 250 Mile Cycle), Michael Cassidy (Labasheeda Community Pride), Brendan Cusack (LDKK Community Games) and Sharon Donnellan (Tulla Scouts 12th Clare). Congratulations to the overall winner Mags Keane.
ILMI wish to offer our sincere thanks to Dermot for his tireless work throughout the Independent Living movement and we look forward to seeing all he achieves in the future.
The awards ceremony was attended by more than 200 community representatives, Elected Members and representatives of Clare County Council, with the ceremony presented by television and radio personality Marty Morrissey.
Photo shows: Representatives from Clare County Council, Minister of State Pat Breen, award winners including Dermot Hayes, and MC Marty Morrissey pictured at the inaugural Clare Community Awards 2019, hosted by Clare County Council


photo of ILMI member Aisling Glynn 

‘My disability has taught me how to deal with life’s challenges’

Another fantastic article from ILMI member Aisling Glynn in the Irish Times click here for the full piece.


photo: transport graphic

ILMI Transport Working Group

Date: 13th March Time 12 – 2pm

That broken ramp on the bus, the forgotten ramp on the train or that taxi company that you have to organise your life around – does our transport system frustrate you?

We at ILMI are calling people to become involved in our national transport consultation group. As we know transport plays a crucial role in the lives of disabled people, getting us out and about to meet friends, go to work, head off to a hospital appointment or simply to head off for the day! However, our transport system continues to disappoint disabled people on a daily basis. So we need you to eliminate the barriers that still exist in our transport system. Disabled people can’t continue to be left waiting as a result of a broken ramp, human error or the lack of availability of these vital day to day services.

The aim of this group is to develop a collective discussion around transport for disabled people. Transport is one of our core strategic policy campaigns for the next three years and we are keen to build a collective approach on this issue.

If you are interested in joining this group email our policy officer

Remember there is real strength in numbers so why not join us! Please note: Spaces are extremely limited!

Photo: housing graphic

Housing Group

Our next housing consultation group meeting is on Wednesday 3rd April from 12 – 2pm in Carmichael centre. If you want to be involved email us!
As policy officer, I am continuing my analysis of the local authorities strategic plans secured to date. Before the meeting ILMI will have met with the housing agency and we hope to give you an indication of the national picture on the day! Also, we are in communication with the NDA and the Department of housing to ensure all relevant key stakeholders are involved in this process.
If you are interested in activating your voice in our housing group – contact me on

Photo: representation graphic

ILMI Working Group on Media Representation of Disabled People
Tuesday 19th March 11am-1pm (On line Discussion)
Many people’s idea of what being a disabled person is like (e.g. tragic, special, sad) is framed in how we are portrayed in the media. Much of the reporting in print and broadcast media still operates from a medical / charity model perpetuating tragedy or super human.

How do we as a collective address and challenge these perceptions and develop our own clear messages to engage in how Disabled people are reported locally and nationally? Also what are the guidelines we develop collectively to inform how we can engage with and inform media on the issues disabled people face.

On Tuesday 19th March you are invited to an online discussion on building a collective analysis on how we would like the media to report on disability and begin a process of engaging with journalists on our terms.
If you are interested in participating and having your voice heard, email  or phone 01-873 0455.

If you would like to join us and wish to participate in the meeting, ILMI uses an app called Zoom to video conference.

Zoom works on smart phones, tablets, PCs, laptops and Macs. If you would like more information on how to use Zoom to participate, we can send that in advance of the meeting

European Anti-Poverty Network (EAPN)

European Anti-Poverty Network (EAPN) Ireland in association with the European Commission Representation in Ireland invite you to Citizen’s Dialogue workshops taking place in Cork, Galway, and Dublin this coming March.

In a year of European elections and with Brexit as a backdrop, the workshops will raise questions and discussion around the EU's role in promoting social solidarity and ensuring no-one is left behind.  
Further details, including a link for registration, can be found here.

The Mná na hÉireann, Women of Ireland Fund is a €1.8 million fund over three years created by Social Innovation Fund Ireland in partnership with Bank of America and the Department of Rural and Community Development. The Department of Rural and Community Development provides match funding for all philanthropic funds raised by Social Innovation Fund Ireland, via the Dormant Accounts Fund.

The Mná na hÉireann, Women of Ireland Fund is the first fund in Ireland to support charities and social enterprises that seek to enhance the economic mobility of women, and is designed specifically to equip these organisations to expand their business acumen, drive growth and deepen their impact across Ireland.
We are calling for applications from organisations that support and empower women to progress their education or progress into new or more sustainable employment. Click Here for more details.


Parliamentary Monitoring

Dáil Éireann debate - Wednesday, 6 Mar 2019 LEADERS QUESTIONS
Micheál Martin TD (Leader of the Opposition; Cork South Central, Fianna Fail)
There is a crisis across the disability services sector in providing access to full-time residential care, particularly for adults with disabilities, as well as to respite care, home care and shared services. Parents of both adults and children are exhausted and stressed and have been beaten down by the system and the absence of services. There is a particular problem for children with disabilities who are being cared for by foster parents, as illustrated by the Ombudsman for Children. Clearly, the Government lacks an appreciation of the crisis and its seriousness. There is terrible inertia at the heart of the Government. Service providers are told to make do with inadequate resources.
In the brief time available to me I will focus on the acute nature of the crisis for adults with disabilities and foster parents. I will refer to a number of cases. Peter is 19 years of age and has an intellectual disability and complex needs. Respite care ceased for him at the beginning of 2015. You can read the whole speech here.
Leo Varadkar Taoiseach (Department of An Taoiseach; Dublin West, Fine Gael)
I thank the Deputy for raising the important issue of disability services. The Government cares for people with disabilities and those who care for them. We have made it a priority in the past couple of years to improve rights and services for people with disabilities. I acknowledge that there is an enormous need and that there are many complex individual cases, with which we struggle. The Deputy deals with them in his work as a public representative, as I do. We do our best to resolve them as quickly as we can, but often they can be difficult to resolve, particularly where there are individual issues and they are very complex. However, we are making a great deal of progress. After many failed attempts by many previous Governments, last year we ratified the UN Convention on the Rights of Persons with Disabilities. The budget for disability services is now €2 billion. It is a very big budget which was increased by €150 million last year. The Deputy is right that we should not just talk about global figures but also about what they mean in terms of their practical impact for citizens with disabilities and the people who care for them. They mean, for example, that we are able to recruit an additional 100 therapists this year. We anticipate that 20 of the 100 will be in place by April which will allow us to reduce waiting times for services such assessments of needs, for which people have been waiting a long time. There is additional investment in respite care services. This time last year we approved additional funding for 12 new respite care houses, of which ten are already open and providing respite care for 578 people. That is very important because family carers get the break they need while the people for whom they are in respite care. You can read the whole answer here

Written answers Tuesday, 5 March 2019 Department of Transport, Tourism and Sport
Services for People with Disabilities
Eamon Scanlon TD (Sligo-Leitrim, Fianna Fail)
474. To ask the Minister for Transport, Tourism and Sport if provisions will be made for a wheelchair accessible bus on the 480 bus route from Ballyshannon to Sligo; his views on whether having to give 24 to 48 hour notice to book a place on an accessible bus is unfair; if he will implement the 16 recommendations contained in the Accessibility of Public Transport for People with Disabilities report in order to achieve equal access for all; if adequate funding and a clear policy plan will be provided to move towards full accessibility on all public transport; and if he will make a statement on the matter. [10569/19]
Minister Shane Ross (Dublin Rathdown, Independent)
As Minister for Transport, Tourism and Sport I have responsibility for policy and overall funding in relation to public transport. However, I am not involved in the day-to- day operations of public transport.
I have explained to the House previously, that under the Dublin Transport Authority Act 2008, the National Transport Authority (NTA) has statutory responsibility for promoting the development of an integrated, accessible public transport network.
In light of the NTA's responsibilities in this matter, I have forwarded the Deputy's question to the NTA for direct reply to you.  Please advise my private office if you do not receive a response within ten working days.
The Report of the Joint Oireachtas Committee on Transport, Tourism and Sport, "Accessibility of Public Transport for People with Disabilities", was debated in the House on 21 February 2019. I was pleased to contribute to that Debate and also at the launch of the Committee's Report on 14 November 2018. In addition, I debated with Members of the Joint Committee and other Members of the Oireachtas, on 07 February 2018 as part of the Committee's work in preparing its Report. On each of these occasions, I outlined my policy and provided updates in relation to accessible public transport.
Accessibility features, such as wheelchair access, are built into all new public transport infrastructure projects and vehicles from the design stage. Looking to the future..... Full answer can be found here

Woman can't get to college because bus can't take her wheelchair

"Victoria Matthews says the problem is common in many rural parts of Ireland and she's already collected nearly 4,000 signatures on a petition, calling for public transport guidelines to be reviewed". ....Read the whole article here


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Center for Independent Living · Carmichael Centre · North Brunswick Street · Dublin, D D7 · Ireland

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