Dr. James Casey:

I thank the Cathaoirleach, committee members and the staff of the Oireachtas. They have been very accommodating and we appreciate that. The committee's work will make a difference eventually. Politics can go up and down. We appreciate that work.

I am accompanied by my colleague, Peter Kearns. ILMI is a disabled person's organisation not only in terms of the CRPD but also in terms of social justice and historical movements. We were established in 1992 by disabled people for disabled people and we continue this legacy by harnessing the collective lived experience of disabled people in Ireland and facilitating objective authentic agency to their perspectives.

Independent living is an aspiration of every person, disabled or non-disabled. It is not, perhaps, so much living on your own as living a life of self-determination, whatever form that takes. However, it is not a segregated life, whatever guise that is presented in. It is living and thriving and contributing to our communities. Nonetheless, to reach these goals we must co-create, collaborate and monitor the policies, rights and strategies that enable us to achieve them. This can be achieved only with disabled people and their organisations.

DPOs are crucial conduits of the collective authentic disabled person’s perspective. Without authentic DPOs, we cannot move from single issue-based policy targets to more strategic and nuanced policy objectives. DPOs give policymakers structure of consultation but, more important, they also give policymakers access to authentic, citizen-generated data and, critically, the opportunity to move from consultation to co-creation of policy. This makes for better policy, which makes for better outcomes of opportunity for those it affects, which leads to a more healthy and inclusive society. DPOs allow for strategic thinking and for accountable representatives to bring agreed actions and targets.

Although individual disabled people can and do bring their own issues to local or national structures via self-advocacy, they cannot bring an authentic cross-impairment, collectively mandated, intersectional analysis to develop or inform policies. There are numerous examples of policymaking spaces where the State recognises the primacy of collective autonomous spaces for people who experience social exclusion.

Disabled people need to be resourced to participate in, recognise and celebrate the value of collective empowerment in DPOs. Conversely, self-advocacy and advocacy groups cannot be managed or facilitated by service providers or their representative organisations. This is very important. There is incompatibility due to power dynamics. It is not impartial, it is not in the ethos of the CRPD, and it is against the basic tenets of our democratic and social contracts. A structured, objective conduit of agency, such as a DPO like ILMI, enables disabled people to articulate their perspectives and lived experience of issues in a strategic fashion, without a conflict of interest or a fear of reprisal.

The CRPD is clear on the prominent position of DPOs in advocating for disabled people, and this is rather detailed in the articles, of which Dr. Sinnott mentioned a few. What is less clear is the misrepresentation of who is speaking for the collective wishes and experiences of disabled people. In the absence of mandated DPOs, many organisations and individuals have claimed to speak on behalf of disabled people, contrary to the aims of the CRPD. This is perturbing and undemocratic and puts the social contract under yet more strain. The co-operative strategic input of mandated DPOs has to be recognised as a matter of how to realise the CRPD and build the participative democratic inclusion of disabled people in the design and monitoring of policies and practices to realise our rights. Allies are welcome and appreciated but they cannot speak fordisabled people, nor can they claim the mandate to do so. This puts our democratic and representational processes under question yet again.

ILMI has a demonstrated track record and values-driven collective ethos to be best placed, with its fellow DPOs, to facilitate and co-create meaningful polices and strategies. Our project ONSIDE, on which Mr. Kearns and I worked in the Border counties, and the Strategies for Change initiative were unique, transformative and successful and led by disabled professionals. We believe that they, with the rest of our efforts, have contributed to shifting the paradigm of disability in Ireland to a more modern, human rights and equality perspective. As a DPO, ILMI has endeavoured continually to make disabled people part of the conversation about diversity and true inclusion in society and recognise active allyship with other marginalised and equality-based organisations and groups. We have always done this diligently, with the collective good driving our efforts. However, we are under-resourced, undervalued and underrepresented. When we consider the disability industry and sector in Ireland are funded in the order of many billions of euro of public money, we see how truly small our financial support is but how big our impact has been. We need support - long-term, multi-annual financial support and other forms. We have shown ourselves to be a catalyst for change and an authentic voice for disabled people, and we have added to the discourse on social justice and environmental concerns. We have always tried to bring people together rather than part them, and we have always done this with our values at the core of our work.

ILMI recognises, supports and values the intersectionality of disabled people and the multiple forms of discrimination we may face. We share and promote common goals with social and climate justice groups, women’s rights groups, LGBTIQA+ rights organisations, Traveller rights and solidarity groups, anti-racism groups and people of colour groups. We do this because it is the right thing to do and we do so not by division or othering but by active solidarity and collective agency with solution-based policies based on the collective voice. This is how we can achieve a more inclusive, fairer and more balanced society. We have always had more in common than we ever will have apart.