Opening Statement to the Joint Oireachtas Committee on Disability Matters on the topic “DPOs and the Implementation of the UNCRPD”

June 1st, 2023

Delivered and Written by Maryam Madani, with Peadar O’Dea

Good Morning and Thank you to the Committee for inviting us to speak today.

I wish to begin by acknowledging the presence of our allies in government and our fellow DPOs who are here today. Many of the points you will hear this morning have been repeated in previous sessions last year by the likes of Robbie Sinnott and Leo Kavanagh and I hope any repetition of these points today will emphasise their importance.

 I am here with my colleague Peadar O’Dea representing Disability Power Ireland.

Disability Power Ireland is a grassroots, cross-impairment disabled person’s organisation or 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 who 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 For example, it is imperative that the state repeals the outdated Disability Act (2005) and replaces it with holistic anti-discrimination legislation that is firmly rooted in the rights-based UNCRPD, to ensure guarantees of independent living, education, employment and an adequate standard of living, none of which are covered under the medical orientated disability act but 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 that: “The effective and meaningful participation of persons with disabilities, through their representative organizations, is… at the heart of the Convention.”

The term “representative organisations” has been misused. It refers solely to DPOs, not charities, not service providers, and not disability organisations whose leadership roles 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.

To quote General Comment 7.11:

“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.

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, 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, which we along with many other DPOs including DADA have emphasised should cover the additional cost of disability, shown to be up to 12,000e 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, none of whom have been able to receive funding yet for all the work they do. These other DPOs, some of whom may be present today, include Disabled Women Ireland, Neuro Pride Ireland, Full Spectrum Ireland and DADA.

Under General Comment no 7.13, State Parties are obligated to “support the capacity and empowerment” of DPOs. In order to effectively fulfill our role in the realization 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 organizations 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 were able to apply to it 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 marginalized communities in Irish society – experiencing higher levels of poverty, unemployment and social exclusion due to societal barriers which makes 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. You must support disabled people through our DPOs in order to give any credence to the gold standard human rights treaty you have signed and are seeking to implement. Thank you.