The Seminar: “The UN CRPD: the World’s ‘Declaration of Independence’ for 1 billion persons with disabilities. -The work of the Centre on Disability Law & Policy in Ireland & Case Study on the impact of the UN CRPD - Major Shift in EU Funding Strategy away from Institutionalization and toward Community Living (2013)" was coordinated by Judy Heumann, who is the Special Advisor for international Disability Rights at the U.S. Department of State.
The keynote speech was given jointly by Professor Gerard Quinn, Centre on Disability Law & Policy, and Senator Katherine Zappone.
Professor Quinn and Senator Zappone discussed the symbolic as well as the practical implications of European Union ratification of the UN CRPD. Senator Katherine Zappone spoke about the EU funding for disability services and the strategic shift to move away from funding institutionalised care for the benefit of supporting community living, and her bill, Criminal Law (Sexual Offences) (Amendment) Bill 2014, also known as the ‘Right to Love’ Bill.
Senator Zappone’s full speech:
The UN CRPD and Its Power to Trigger Change: A Lawmaker’s Perspective
We are Collaborating for Change
I am delighted and privileged to accompany my colleague and friend Professor Gerard Quinn in this presentation on the United Nations Convention on the Rights of People with Disabilities and its power to trigger change. Ger and I first met when the Irish Minister for Justice appointed us both to the Irish Human Rights Commission over a decade ago now. In May 2011 our Taoiseach (Prime Minister) appointed me to the Irish Senate and since that time Ger and I have collaborated on a number of policy and legislative initiatives, utilizing the UN CRPD as our inspiration and source for change.
Our collaboration – that of lawmaker and academic – has been quite unique I think in an Irish context. It has shaped both the content of the change we seek as well as the strategies we use. The collaboration has also built a bridge, I think, so that other lawmakers and public servants can learn from academics and academics can get an inside view of the potential, pragmatics and limits of lawmaking to bring about human rights change for good.
Collaborating for foundational change of course requires other actors, other agents, and innovative processes. Front and centre are the people whom the change will most directly impact. They are activists and advocates in their own right – and many have worked side by side with us as we have drawn on the power of the Convention to activate change. We bring together then a mixture of actors – activists, academics, lawmakers, advocates, public servants and indeed artists – and we use the multiple sites of universities, parliamentary chambers, theatres, ministerial/cabinet political offices, social and traditional media outlets – and we carry a profound sense of hope that some justice will be done and more freedom realized.
I am reminded here of some of the opening words in Amartya Sen’s book, The Idea of Justice. He says:
“It is fair to assume that Parisians would not have stormed the Bastille, Gandhi would not have challenged the empire on which the sun used not to set, Martin Luther King would not have fought white supremacy in ‘the land of the free and the home of the brave’, without their sense of manifest injustices that could be overcome. They were not trying to achieve a perfectly just world (even if there were any agreement on what that would look like), but they did want to remove clear injustices to the extent they could” (2009, p. vii).
We are Re-defining and Embracing a New Humanity
Professor Quinn has outlined several ingredients in one case of our work together – the unlikely bedfellows of EU Structural Funds and the UN CRPD—and I will add some of my own reflections to that momentarily.
I want to preface those remarks though by referring to some of the ethical and philosophical foundations that I bring to our praxis as a lawmaker. One of the primary challenges of the 21st century is for lawmakers to catch up with how humans are living their lives. Indeed wouldn’t it be visionary if lawmakers might think about their job as making law that embraces the full continuum of humanity, so that law shames no one or shamed by the lack of law.
Martha Nussbaum’s text, Hiding from Humanity: Shame, Disgust and the Law, inspires some of my thinking here. What would it mean for political representatives to change law or create new law that does not perpetuate a society that ‘hides from humanity’? It would mean to change law that embeds shame and disgust for some humans and not others. It would mean to create law that protects all citizens from insults to their dignity. It would mean to remove stigma from former or current social groups that are marginalized. It would mean that law takes up its right, proper and honourable function to protect all citizens in areas essential to their individual humanity. Lawmakers and policymakers would have to re-examine the social norms contained within law, public policy and the budgetary choices that accompany these and they would have to ask and answer: What is ethical law for people with disabilities? What is ethical law for others who have been shamed by our social norms?
In asking these kinds of questions, lawmakers and policymakers would start to participate in the global paradigm shift that re-defines humanity as every one who is human. This paradigm shift is being generated in good part by the global human rights movements of all those who stand outside old, withering and hegemonic norms. And as the hegemony of sameness withers—not without a grand fight it must be said—what rises in its place is diversity and the ethical imperative to practice interdependence. We are born different from each other. And, as Martin Buber once said, we are created related. Human rights scholars and activists, especially in the disabilities field, speak about independence within the context of community. No one is autonomously independent. All of us become ourselves in relation, or within community. And it is the flourishing within community or relationship that enables us to be ourselves, to be happy, to be well, and to withstand the suffering of being human, and to grow resilience on the bedrock of the deep experience of dignity.
I think we need law that protects citizens and residents from shaming. What does shame feel like? I know something about what shame feels like because my sexual identity did not fit within an exclusive/excluding heterosexual norm as I was growing up. And although Irish society and other societies have gone a long distance to normalize homosexual identity through law and policy—some people still don’t get it—like a man who recently ‘looked through me’ then ‘away from me’ as I introduced Ann Louise Gilligan to him as my spouse and life-partner.
We need law that is purged of shaming those who have been viewed as ‘other’. We need law that embraces the full continuum of a re-defined humanity. We need law that supports human freedom and space for human creativity and belonging. Furthermore I believe that this type of law will necessarily support the creation of decent and adequate material conditions of life for all.
In this way we may be engaging also in re-defining the function of law itself. What is the function of law? Should it simply embed existing emotional and social norms or, as Professor Nussbaum proposes – should law ‘itself be normative, playing a dynamic and educational role’? Should law help to shape the societies we want to become? I think so. That is why it is such a privilege, and a burden, to be a lawmaker.
The UN CPRD and its Power to Trigger Change
Through my membership on the Irish Human Rights Commission I learned a great deal about how to bring a human rights approach to law and policy-making. The Commission produced numerous observations on current and upcoming legislation, in order to provide advice to the Irish government and members of parliament. As an integral part of this work, we always drew on international human rights conventions and standards, and ways in which they have been interpreted by UN Committees and other authorities in order to proffer advice.
In early summer of 2012 Professor Quinn approached me about the issue of negotiations surrounding the regulations for the upcoming round of EU structural funds. He and his colleagues had been working on this for some time [in an exceptionally strategic and creative fashion!] He was wondering if Ireland’s assumption of the Presidency of the European Union for the first six months of 2013 might provide an opportunity to push Structural fund investment in Community Living, especially for those 1.5 million persons with disabilities who were/are institutionalized in European member States. Of course, the reach for this type of ‘smart, sustainable and inclusive’ investment would produce benefits for AND far beyond that group of people. It would benefit middle-aged people heading towards being older and who might require personalized supports if a disability arrived in their ageing process and it would benefit children not born who might require specialized supports to stay within their family home and community. Further along the horizon, changing regulations of EU Structural funds could be a budgetary mechanism to embed the European socio-political philosophy of practicing inclusion. Circling back to my earlier comments, it could support the design of European laws and directives that move further along acknowledging the full continuum of humanity and human rights. [This is the ‘stuff’ of my conversations with Professor Quinn!]
So of course I welcomed the opportunity to collaborate for change. I set about planning with him ways to engage and influence members of our Cabinet and other lawmakers to get these types of negotiations pushed up the political priority ladder. My first opportunity was to deliver a public message, in our Seanad (Parliamentary) Chamber, to our Taoiseach (Prime Minister) Enda Kenny, T.D. when he came to ask Senators their views on what kinds or priorities ought Ireland set for its Presidential term of the EU.
My response to his request followed along these lines:
I suggested that the EU 2020 vision of a ‘smart, sustainable and inclusive’ European economy and society specifically calls for fresh thinking and social innovation as a way of re-vitalising the European social model.
I asked him to consider two options in our Presidency that would mark a very visible contribution to renewing the European social model into the future.
My first suggestion had to do with disability. In light of the EU’s ratification of the UN Convention on the Rights of Persons with Disabilities, I noted that this calls for concerted action at EU level as well as Member State level over the coming years. I acknowledged the work that Ireland has done in beginning a transition away from institutions into community living, particularly in light of our Health Department’s report ‘Ending Congregated Settings’ that has been much lauded around the world. I reminded him that our Presidency would coincide with the finalizing of the EU Regulations for the next programming period of the EU Structural Funds, and argued that we need to find innovative and positive way to harness the Structural funds to ease the process of transition to independent living and community engagement around Europe.
I urged he and his colleagues to give consideration to a high level Ministerial meeting on achieving community living through the appropriate future use of the Structural Funds. In doing so Ireland could move a constructive agenda forward that would help achieve the goals of the UN disability treaty in Europe. I also said that there might even be an opportunity to learn about and build on the establishment of the Federal Administration on Community Living by the Obama Administration as a way of harnessing federal resources to the achievement of community living for disabled and older people in the US.
My second recommendation to the Taoiseach that day was the hosting of an Irish Presidency event to consider the case of a new UN treaty on the rights of older people. At that time there had not been any open and inclusive European-level debate on whether this would be a positive step and how the process might be supported. I suggested that the Irish Presidency event could focus on the added value of such an instrument as a UN Treaty. And I noted that it would be the first time that Governments, civil society and especially older people themselves, would have the opportunity to decide OPENLY on whether such an instrument would constructively move the agenda on the rights of older people forward.
I knew that this second recommendation was a ‘long shot’ and indeed it was not taken up. Still it placed the issue on the public/parliamentary record and became part of the long-term strategy to influence European parliamentarians and public servants to engage with an emerging and dynamic human rights movement calling for a new UN Treaty on the Rights of Older People. I know that Professor Quinn continues to work on this issue – as do I.
We were more successful with the first recommendation. Subsequent to the parliamentary engagement, the Taoiseach asked his Minister responsible for disability and older people to open negotiations with us on the possibility of hosting some type of Irish/EU Presidency event related to Structural funds and Community Living. The lengthy negotiations over the summer and fall period produced a Governmental commitment to support an international conference hosted by the Centre for Disability Law and Policy at NUI Galway by allowing it be organized ‘in association with the Irish Presidency of the European Council’. As Professor Quinn has already outlined, this conference brought together a broad spectrum of European interest groups—covering both the disabled and older people—as well as national and international policy makers. [I view this as an ‘intersectional’ initiative – and perhaps we can speak about that in the Q & A]
That the conference was organized ‘in association with the Irish Presidency of the European Council’ meant that we had successfully engaged/ensnared (!) lawmakers in the process of firstly, deep learning about the UN CRPD, particularly though not exclusively Article 19 [Living independently and being included in the Community]. This, in my book, is a huge achievement. My experience as an Irish and European parliamentarian is that the majority of lawmakers do not yet have ‘deep learning’ about a) a human rights based approach to law-making and b) specifically how international human rights conventions and treaties can be/should be used to guide us in our domestic lawmaking. So, we got that engagement and this, in turn, provided a nourished seedbed for the future negotiations. What I want to emphasize here, though, is that we reached out to and managed to engage TWO Ministers of the Irish State in this process. The first was Minister Kathleen Lynch, T.D. – she was the obvious choice as she held the policy portfolios of Disability and Ageing. So, she understood the human rights language and issues. But I think the conference added value to her own deep learning and further it supported her in subsequent efforts to emphasise/sell the power of the ‘human rights’ lens and the right to independence and community living to other colleagues both in Europe and in Ireland.
Our second choice of ministerial presence and engagement was Minister Brian Hayes, T.D. He held a portfolio in the Irish Department of Finance. Investment, added value, smart and sustainable economies, structural funds was his bread and butter. He knew the concepts, the language, and the financial issues. AND he was willing to learn how a UN treaty on human rights might be related directly to such matters. Minister Lynch spoke in the morning session and Minister Hayes chaired the afternoon session whereby speakers drew a direct relationship between structural funds and community living. He left deeply impressed by the power of self-advocates and the persuading vision and rationale of the academy (led by Ger). As Professor Quinn emphasized in his contribution during that session, the process regarding shifting use of funds from institutionalization towards community living had moved past the administrative level. It was a stalemate at that level. Professor Quinn declared “the process is now at a political level under the aegis of the Irish Presidency.” Both Ministers left the conference with that message ringing in their ears!
As Ger has outlined, negotiations began to shift towards the sun during the Irish Presidency and new EU Structural Funds Rules/Regulations were agreed by end of 2013 so that no more monies would be spent on institution-building, and instead would be spent on community services to enable independent living within communities.
Lawmakers and Parliaments as Effective Human Rights Actors
The impact of our work on this case extends beyond the obvious territory of embedding human rights within EU structural funds and budgetary policy. It is also part of a larger process, I think, of enabling lawmakers and parliaments to be effective human rights actors. We naturally think of advocates and activists as effective human rights actors but we must also envisage lawmakers and parliaments taking on this role too, particularly with regard to international/UN human rights treaties.
The Office of the United Nations High Commissioner of Human Rights is spearheading various international initiatives that are geared towards strengthening the human rights treaty body system – that is the system of signing and ratifying an international human rights treaty, followed by an ongoing cycle of monitoring its implementation domestically through the formal exchange of UN Committees with State parties that have signed up.
To increase the effectiveness of a State party’s compliance with its international human rights obligations (and in our case study the EU in its collective membership is the ‘State party’) the High Commissioner and her Office have been encouraging greater parliamentary oversight of the country’s human rights obligations. One of the ways to do this is to ensure that lawmakers learn deeply about treaty obligations, and for them to participate directly in the UN treaty body system. Usually it is the Government or Cabinet that reports in to the UN, with little or no engagement by lawmakers or the parliamentary process itself.
I am seeking to change this, with the assistance of Professor Quinn and other human rights colleagues. As a member of the Equality and Non-Discrimination Committee of the Parliamentary Assembly of the Council of Europe [with 321 European states as members] I produced a report to encourage greater co-operation between a European state and its national human rights institution so that parliaments and lawmakers might be better advised on how to understand and implement international human rights obligations. Integral to the report is a recommendation that every European parliament should set up, where it does not yet exist, a parliamentary committee responsible for human rights and equality. Further, I am in the process of encouraging the Irish parliament to extend the remit of our Justice Oireachtas (parliamentary) committee to include specific responsibility for oversight of the country’s constitutional and international human rights obligations. Ger is also supporting this work.
As an example of how this might play out, one of the Seanad Committees (that consults the public on matters not covered by other parliamentary committees) held public hearings with civil society groups and our national human rights institution, in order to write its own report on Ireland’s compliance with its human rights obligations under the International Covenant on Civil and Political Rights. The UN Human Rights Committee on this treaty is examining Ireland in Geneva today! The Government submitted its own report ahead of time but there was no engagement with any lawmakers or parliamentarians to produce the report. This keeps lawmakers out of the learning and leadership loop. With the Seanad report, and I was its rapporteur, we interrupted the usual process. My understanding is that it is one of the first, if not the first report presented to the UN Committee from a committee of parliament. Indeed the Irish Senate Committee has just featured in the June 2014 newsletter from the Office of the High Commissioner, noting and affirming the uniqueness of what we have done. Coming back to our specific topic at hand, I am pleased to say that one of the recommendations of the Seanad report is for Ireland to progress its Assisted Decision Making (Capacity) Bill. This will introduce important reforms to Ireland’s legal capacity laws and provide for the first time in Irish legislation decision-making assistance agreements. These will enable people with disabilities to avail of support in exercising their legal capacity – Article 12 of the UN CRPD!