Ms Maryam Madani:

I thank committee for inviting us to speak today. I wish to begin by acknowledging the presence of our allies in government and our fellow DPOs which are here today. Many of the points the committee will hear this morning were made in previous sessions last year by the likes of Dr. Sinnott and Mr. Leo Kavanagh. I hope any repetition of these points will emphasise their importance.

I am here with my colleague, Mr. O'Dea, representing Disability Power Ireland. Disability Power Ireland is a grassroots, cross-impairment DPO led and run entirely by disabled people. We seek to build grassroots collective power and increase visibility and participation of the disabled community through our parade and festival for Disability Pride Month in July, and through protest, art and direct action, while also engaging in policy to advance the human rights of the disabled community.

Nowhere are our rights better articulated than in the UNCRPD. It should forever be a source of shame that Ireland was the very last country in the EU to ratify the UNCRPD. Do we also want to be the last to ratify the optional protocol, because that is where we are headed? For perspective, North Korea has signed it. The only other countries that have not are the Netherlands and Belarus.

Without the optional protocol, there is no weight behind the Government's commitment to meeting its obligations under the UNCRPD. It is a silencing of the voices of disabled people in this country who have no recourse to address their human rights violations. There is no excuse for our Government's failure and continued delay to ratify, which is itself an admission that Ireland's legal structures are not up to par and that it is failing to implement the UNCRPD. We see this across the spectrum of disability issues including failure to provide adequate personal assistance services.

Details of where our national legal framework needs to be updated can be found in our submission on the topic to this committee. For example, it is imperative that the State repeal the outdated Disability Act 2005 and replace it with holistic anti-discrimination legislation that is firmly rooted in the rights-based UNCRPD in order to ensure guarantees of independent living, education, employment and an adequate standard of living. These are not covered in the medical-orientated Disability Act but they are provided for within the convention.

In terms of the role of DPOs in implementing the UNCRPD, we quote general comment 7.1 of the UNCRPD, which states: “The effective and meaningful participation of persons with disabilities, through their representative organizations, is ... at the heart of the Convention." The term "representative organizations" has been misused. It refers solely to DPOs, not charities, not service providers and not disability organisations the leadership roles of which are not filled by disabled people.

Under general comment 7.11, representative organisations “can only be those that are led, directed and governed by persons with disabilities,” as well as having a clear majority of disabled people in their membership. General comment 7.9 states:

States parties should acknowledge the positive impact on decision-making processes and the necessity of involving and ensuring the participation of persons with disabilities, through their representative organizations ... notably because of their lived experiences and knowledge of the rights to be implemented.

We as disabled people are the experts on our own lives and on these issues, which directly affect us, but because our lived experience and expertise is so undervalued, it is common practice everywhere for disabled people to be the only ones in the room who are not being paid to be there and consulted with, including in this room. Our travel expenses were not covered by the committee.

You would think, given the clearly crucial role of DPOs in implementing the UNCRPD, that some specific Government supports would be available to us. There are currently none. If only our expertise was valued, this could and should be an opportunity to start to rectify the 70% unemployment rate for disabled people. That is the worst in the EU alongside Greece according to the latest report by the European Disability Forum. Of course, social protection laws will have to be significantly updated to enable disabled people to accept paid work and grants for our organisations without losing our disability allowance. Along with many other DPOs, including Disabled Artists and Disabled Academics, DADA, we have emphasised that that should cover the additional cost of disability, shown to be up to €12,000 in the latest Indecon report. Our disability allowance, medical card and free travel pass should not be affected by taking on grants or precarious employment. We recently formed a coalition of new grassroots DPOs, which is still growing, none of whom have been able to receive funding yet for all the work they do. These other DPOs, some of whom may be represented here today through the DPO Network, include Disabled Women Ireland, Neuro Pride Ireland, Full Spectrum Ireland and DADA.

Under general comment 7.13, states parties are obligated to “support the capacity and empowerment” of DPOs. In order to effectively fulfil our role in the realisation of the UNCRPD, we require core funding and capacity-building supports to enable the establishment, development and operationalisation of DPOs. Whatever little funding is available to DPOs is often inaccessible to us due to prior established, larger organisations such as charities and service providers being in a better position to meet funding requirements. We cite the recent example of the disability participation and awareness fund, administered via Rethink Ireland and funded by the Department of Children, Equality, Disability, Integration and Youth. While this fund ostensibly aimed to “support the overall participation of people with disabilities in local activities, in line with the implementation of the UNCRPD”, it showed no commitment to investing specifically in DPOs to build their capacity or any recognition of our crucial role in implementing the UNCRPD. None of the DPOs in our coalition or those here today was able to apply to that fund due to barriers we face in obtaining legal status as companies and the reluctance of all DPOs to register as charities in order to challenge the charity-tragedy models of disability.

Disabled people remain one of the most marginalised communities in Irish society, experiencing higher levels of poverty, unemployment and social exclusion due to societal barriers that make it incredibly difficult for us to self-organise into DPOs to begin with, particularly if they are truly representative, grassroots groups founded by disabled people from the ground up and not by non-disabled people or Government bodies, such as in the case of the very well-funded Disability Participation and Consultation Network, DPCN. We urge both Houses of the Oireachtas and all relevant Departments to take this seriously. They must support disabled people through our DPOs in order to give any credence to the gold standard human rights treaty the Government has signed and is seeking to implement. I thank the committee.