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ILMI eBulletin 
6th May 2022

The #PASNOW Campaign Webinar May 5th 2022

IMAGE: montage of images from webinar
 
In recognition of European Independent Living Day 2022 the team at Independent Living Movement Ireland (ILMI) were delighted to host a #PASNOW Webinar. The webinar was a culmination of a 30 Days of Action Campaign, undertaken to highlight the lack of legislative protection for the right to access Personal Assistance Services (PAS) in Ireland.
 
Opened by ILMI Chairperson Desmond Kenny, the Webinar saw influential politicians and policy makers united with users of the PAS. ILMI Peer Mentor Shelly Gaynor, who was part of the 30 Days of Action, spoke about how her PAS had opened up opportunities for her in life that other non-disabled people would take for granted. Shelly doesn't want to be viewed as fortunate and firmly supports the need for the #PASNOW campaign so other people can avail of similar opportunities.
 
Policy Officer James Cawley provided context to the campaign; explaining how it emerged from grassroots consultations and has evolved further since a Dail Motion was passed in 2019 supporting the need for a PAS Commissioner. James explained how over the past eighteen months ILMI have worked directly with all 31 Local Authorities to secure their support for our right to access PAS. At present 29 of those Authorities have passed the Motion with the remaining two awaiting meetings to pledge their support. With local government support the Campaign is now ready to press ahead into the next phase.
 
Political inputs were provided by Senator Erin McGreehan who spoke about how she has been instrumental in ensuring support for #PASNOW from both her local Louth Council but also many other Local Authorities across the country. This support was echoed by Deputy Thomas Pringle who has supported the #PASNOW campaign from the outset and pledged his continuing assistance to ensure the rights of disabled people are protected. Senator Eileen Flynn expanded on this further by explaining how the voice of disabled people themselves is paramount to this process and needs to be both listened to and included if true equality and equity is to be achieved.
 
Powerful personal testimonies were provided by Daniel Airey and Ann Marie Flanagan. Dan outlined his recent campaign to try and secure the PAS he needed to live his life. Dan's campaign wasn't just for him but for every disabled person who wants independence as he stated "A carer allows you to function, a PAS allows you to truly live". His sentiments were endorsed by long-term disability rights activist Ann Marie Flanagan who spoke movingly about the fulfilling life that she leads, yet devastatingly in law and policy she is viewed as sub-human. 30 years after the introduction of PAS in Ireland she still does not have the right to access the PAS she needs to live the life she chooses.
 
Minister Anne Rabbitte recognised their inputs and pledged her support for the greater reorientation of funding towards PAS, with a detailed policy for its provision. Minister Rabbitte stated that she was proud to be able to support #PASNOW and believes we have momentum to assist disabled people to live their best lives; protected by the right to do so.
 
Bringing the webinar to a close ILMI CEO Damien Walshe stressed that this is just the first step in the next phase of the PAS Campaign. We now need to move forward and work together to ensure the State is providing all necessary supports for disabled people to live their lives to their full potential. This will involve cross-party political support and solidarity from within the Independent Living movement.
 
ILMI will be announcing details of the next phase of #PASNOW in the coming weeks. If you want to support the campaign, you can follow it on all ILMI social media pages (@ILMIreland) or contact the ILMI Policy Officer James Cawley at jamescawley@ilmi.ie or 086 7744991.



May 5th ILMI’s Vice Chair Selina Bonnie speaking at Committee on International Surrogacy

IMAGE: Screenshot of Selina Bonnie in action!

With support from her colleagues Dr Áine Sperrin Selina delivered a robust contribution in relation to the topic of issues faced by disabled persons and same sex couples, both male and female, entering international surrogacy arrangements and achieving parental recognition.

Excerpt from the statement: “The purpose of ILMI’s statement today is to:
• put the voice of disabled persons who have lived experience of infertility, and the need for inclusive access to AHR (an important component of reproductive justice) on record;
• stress the importance of your deliberations and recommendations being underpinned by an understanding of intersectionality; and
• remind members of Ireland’s responsibilities under Article 23 of the UNCRPD which is concerned with respect for home and the family, including the right of disabled persons to found a family”

You can read the full statement here  and watch the video here 


Disabled People and the Assisted Human Reproduction Act: Discussion space May 18th 1pm

IMAGE: Poster with details of consultation session

ILMI is an active member of the Assisted Human Reproduction (AHR) Group, a coalition representing individuals and couples who have, or are planning to, access AHR treatment, including single people, couples from the LGBT+ community, disabled people and couples where a health or fertility condition is preventing them from conceiving a child.
 
The Health (Assisted Human Reproduction) Bill 2022 is now at second Stage and it is really important for ILMI as a DPO to create a space to learn about what is in the act and how it potentially impacts on disabled people. We are delighted to be joined by Dr Áine Sperrin, from the Re(al) Productive Justice project to talk about the act. There will be a facilitated discussion on the next steps and what ILMI needs to do as a DPO.
 
To sign up for the discussion, email info@ilmi.ie
 
The AHR Coalition is a coalition of human rights and equality organisations: LGBT Ireland, Equality for Children, the National Infertility Support and Information Group, Rainbow Families Equality Network, Irish Gay Dads and Independent Living Movement Ireland.
 
Fiona Weldon at the NDA's Annual Listening Session

IMAGE: screenshot of Fiona Weldon SFC Project worker speaking at the NDA event
 
NDA's Annual Listening Session: Improving participation and inclusion through creating more liveable communities on Wed of this week. Fiona’s presentation involved defining what participation and inclusion means to disabled people.
 
Fiona spoke about the reality of disabled people having to live in a non-participatory and exclusionary society because of a system that is set up to segregate disabled people from non-disabled people. She asked how can real participation and authentic inclusion happen when we have - 
 
Special schools, special classes, day centres, day resource centres, residential and other specialised provisions that are not for "EVERYONE", they are not for non-disabled people
 
 
BUT they are RUN by non-disabled people???
 
This will not change unless:
 
1.           Our lived experience is valued and used authentically to overturn non-participatory and exclusionary practices
2.           We have a genuine RIGHT to the supports that we need to live ordinary lives - RIGHTS NOT CHARITY
3.           We are sitting at the right decision-making tables and not just one of us - we need to be the majority - NOTHING ABOUT US WITHOUT US
4.           DPO's are seen as an essential platform to building a strong DP movement - facilitating disabled people to be in control of their campaigns and strategies to bring about collective change - the UNCRPD makes specific reference to the role of DPOs and the need for the collective voice
5.           Universal design is embedded in "designing for everyone"
Fiona’s finishing words “Disabled People have the same wants & needs as everyone else, we are ordinary, we come from all walks of life”
 
Disabled People are Survivors, survivors of inequality, of the medical model & charity model of disability, of devaluation, of oppression, segregation and institutionalisation - see this video WeThe15 
             


ILMI VOICE Project “designed for disabled people, by disabled people”

IMAGE: VOICE Logo

The online workshops for the VOICE project Kilkenny start on 19 May from 4-5pm via Zoom. Groups are 6-8 people and will run once a week for 6 weeks. The workshops will be on Thursdays from 4-5pm. The workshops and VOICE project are a spaces for disabled people to connect with like-minded people. Social inclusion is an important part of VOICE and as a proud disabled woman, Paula understands that too often, disabled peoples voices are absent in communities. VOICE will address this through the workshops by engaging with participants by asking what they want out of the VOICE project.
 
Anyone who participates in VOICE for the 6 week workshops also has the choice to engage with the project after they complete the workshops. The project is ongoing and the workshops are only one element of VOICE. 
 
Paula understands how important the lived experience of disabled people is in their local communities. VOICE is a space and project that is designed for disabled people by disabled people.
 
To get involved or find out more, please email paulasoraghan@ilmi.ie or call 087 1630 433.
 
 
Linking disabled adults to their County Councils

IMAGE: Peter Kearns Zoom shot of meeting

ILMI are again at the coal-face of changing and transforming state structures for and with disabled people.  Damien Walsh and ILMI ONSIDE Coordinator Peter Kearns received a direct invite to be a main speaker, and also one of a select few of Panel contributors, at the May 4th national meeting with Local Community Development Committees about Engagement of Marginalised groups, such as local Disabled Peoples Organisations (DPOs). The Pobal organised webinar was facilitated to encourage county council Local Economic and Community Planning (LECP) steering groups to see ILMI supported local DPOs being attracted into local authority structures to discuss how to enable inclusion of disability activists in decision making processes at all levels. 
 
The meeting was opened by Minister of State Joe O’Brien TD and ILMI's Peter strongly argued "that Local Community Development Committees (LCDC) should recognise that the disability-service sector does not have a mandate, or even a collective framework, to speak on behalf of disabled people - DPOs have such a mandate to speak for & with local disabled activists and adults". CEO Damien then went-on to own the invited Panel discussion when the topic was about whom LCDC and county councils should consult and dialogue with disabled people directly.
 
Damien and Peter clearly identified the local county based DPOs have a clear 'Voice' role to play in the Local Economic and Community Plan (LECP) setting-out of objectives and actions needed to promote and support economic and community development. Any DPO involvement in he Local Government Reform Act 2014 'power-to-the-people' roll-out is about providing for the establishment of Local Community Development Committees in each local authority area with effective DPO presence.


IMAGE: Damien Walshe on panel, Zoom shot of meeting

The Local Government Reform Act, 2014  outlines significant changes to the role, structure and systems of local government nationally. It provides for the making of a 6 year integrated Local Economic and Community Plan (LECP). The economic elements of the LECP have been developed by the SPC for Economic Development and Enterprise while the Local Community Development Committees (LCDCs)  have developed the community elements of the LECP.
 
Each LECP must be consistent with the existing State Regional Planning Guidelines 2010-2022 and subsequently with the Regional Spatial and Economic Strategies (RSESs) to be prepared by the Regional Assemblies and a new National Planning Framework which, it is envisaged, will replace the National Spatial Strategy. Therefore, any local DPO involvement with a county council LECP must also be consistent with the county development plan, and should be consistent with current government policy and 2030 'Agenda' for Sustainable Development and the principle of “Leave no one behind”. .
 
Local ILMI DPO relations with LECPs should contain high level goals along with specific actions to drive economic, social and community development for & with disabled adults and youth in their county over the next six years. The plan should be aligned with relevant national, regional and local policies. Such DPO involvement with local authorities and their LECPs must be developed following extensive public consultation with key stakeholders, community groups, local businesses, voluntary organisations and state bodies. 

Following public consultation and dialogue with DPOs, high level goals and objectives could be developed under relevant themes. ILMI suggests that this process could then lead to the identification of local authority targeted and measurable actions which will result in positive economic and community development impacts with local disabled people over the 6 year period up to 2028.

Link for recording of conference is here
 

Cavan and Monaghan DPO information Session

Images: Group shots from the Cavan and Monaghan DPO information Session
 
This week on Wednesday 4th May the ILMI Onside Team held a Cavan and Monaghan DPO information Session which was very well attended. Many disabled people in both counties came together in order to learn about the power of collective activism, social inclusion and what a local DPO can achieve within its community.
 
Disabled Person’s Organisations (DPOs), unlike disability service providers, are led by and for disabled people. DPOs are about disabled people collectively coming together to work on local issues to bring about a more inclusive, and equal society.

To find out more information please email edelmcginley@ilmi.ie or markmccollum@ilmi.ie
 
ILMI ONSIDE Team meeting Deputy Matt Carthy

IMAGE: Zoom screenshot of group

In order to talk about the value of the ONSIDE project within the Cavan Monaghan region, the community navigators of both county’s showcased their work via video testimonials from previous participants. The work of the ONSIDE project has opened up the online world, enabled access to local community services and most importantly combatted social isolation amongst the many participants within the entire project. A truly unique approach which is a combination of IT training, peer support and one on one mentorship. Every participant of the ONSIDE project has a stronger sense of finding their own place in the world while having a stronger voice with the support of their peers.  A big ILMI ONSIDE thank you to Deputy Matt Carthy for all your support and time.

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