Committee Stage Amendments to the Capacity Bill – Semantic Change or Real Reform?

committeeTomorrow, the Assisted Decision-Making (Capacity) Bill finally progresses to Committee stage in the Dail. This Bill seeks to abolish the outdated ward of court system which currently provides the only mechanism in Irish law for removing the legal capacity of an adult and appointing a substitute decision-maker to take legal actions on that adult’s behalf. The introduction of this Bill has been broadly welcomed by civil society, organisations of persons with disabilities, healthcare professionals, families and state bodies – especially as it has been recognised by government as a key reform which is needed in order to enable Ireland to ratify the UN Convention on the Rights of Persons with Disabilities. However, many organisations and inviduals, including a coalition of NGOs working in the fields of disability, mental health and ageing – have identified changes which need to be made to the Bill to ensure that it fully respects the rights of adults in Ireland to make their own decisions, with support, if they wish.

The Department of Justice has published the amendments it proposes to introduce to the Bill at Committee stage here – where you can also read the amendments proposed by all members of the Dail Select Committee on Justice, Defence and Equality. Some of the amendments proposed by the Department are most welcome – and respond to the concerns highlighted by NGOs based on the text of the Bill as first published. One such amendment is the proposal to remove co-decision making agreements from the court process and to make them a more flexible and accessible instrument, similar to the decision-making assistance agreement. Another example is the change in the name of the state body which will oversee implementation of the new law, from the ‘Office to Public Guardian’ to the ‘Decision Support Service.’ While this might seem like a minor change, it can be viewed as an important reaffirmation of the purpose of the legislation – not to provide for paternalistic interventions into people’s lives – but rather to support individuals’ autonomy and self-determination.

However, other amendments proposed by the Department of Justice demonstrate that the ‘paradigm shift’ called for by the UN Convention on the Rights of Persons with Disabilities has not yet been fully achieved. The Centre for Disability Law and Policy, along with other NGOs, has argued that in order for the Bill to have practical and meaningful effect in the lives of people with disabilities – the threshold for ability to enter into a decision-making assistance agreement should be lowered from what was set out in the original text of the Bill. This has not been included in the Department’s proposed amendments to the Bill at Committee stage.

Further, the UN Committee on the Rights of Persons with Disabilities has now clarified in General Comment 1 that ‘perceived or actual deficits in mental capacity’ can never be used as a justification for a denial or restriction of legal capacity, ‘even in respect of a single decision.’ The Capacity Bill, as originally drafted, relied on an ‘assessment of mental capacity’ to determine what kinds of support an individual could access under the Bill, or whether an individual would have her legal capacity restricted by the appointment of a decision-making representative (a form of substitute decision-making). The amendments set out by the Department have not changed this approach – but the Department has proposed to replace the term ‘mental capacity’ in the Bill with the term ‘decision-making capacity.’ In my view, this change is no more than window dressing, as ‘decision-making capacity’ is given the same meaning as ‘mental capacity’ and continues to be used as a basis for restricting legal capacity. A similar critique can be made the Department’s proposal to remove the term ‘informal decision-making’ from the Bill, while retaining legal protection for third parties who make substitute decisions on behalf of persons who they believe ‘lack capacity’ (the very power which was originally provided to ‘informal decision-makers’ in the original text of the Bill). These proposed amendments therefore, do not address the concerns raised by civil society that those most in need of decision-making support will be denied the opportunity to make binding assistance agreements, and that an unacceptably wide power is granted to substitute decision-makers, who have not been chosen by the person or appointed by the court, to make decisions on behalf of a person they believe to ‘lack capacity.’

Based on the amendments proposed by the Department of Justice, the capacity/incapacity paradigm is now firmly embedded in the Bill – in decision-making assistance agreements, co decision-making agreements, decision-making representative orders, powers of attorney and advance healthcare directives. Again, while a number of submissions were made by NGOs to the Department to advocate that advance healthcare directives be recognised as legally binding in situations of involuntary detention (see here and here) – this proposal has not been reflected in the amendments introducing advance healthcare directives to the Bill at Committee stage. Finally, the relationship between this Bill and other areas of law where ‘mental capacity’ or ‘decision-making capacity’ is used as a criteria to restrict or deny legal capacity (for example in mental health law, sexual offences and eligibility for jury service) has not been clarified in the amendments proposed at this stage.

Along with many others, I will be watching the debate tomorrow with interest, and hope to see some of the concerns outlined here addressed by the members of the Committee. This debate is all the more significant since the Bill is one of the key pieces of legislation which government has deemed necessary in order to facilitate Ireland’s ratification of the UN Convention. In my view, if the Bill is not amended to ensure compliance with the UN Committee’s interpretation of Article 12 of the Convention, then it will remain a barrier to Ireland’s ratification of this important human rights treaty.

Committee Stage Amendments to the Capacity Bill – Semantic Change or Real Reform?

Ireland’s Record on Social, Economic and Cultural Rights – Disability and Mental Health Perspectives

unpoNext week Ireland will be examined by the UN Committee on Economic, Social and Cultural Rights (CESCR) – and the impact of austerity measures on the Irish public over the last several years will be scrutinised. In this post, I highlight some key issues from a disability and mental health perspective which might be addressed by the Committee, based on the concerns outlined by various civil society groups. Continue reading “Ireland’s Record on Social, Economic and Cultural Rights – Disability and Mental Health Perspectives”

Ireland’s Record on Social, Economic and Cultural Rights – Disability and Mental Health Perspectives

Anti-vaccination movements, children’s’ rights and private power

We are delighted to welcome back Ntina Tzouvala who is Deputy Co-Convener of Law and Global Justice and a PhD candidate  at Durham Law School. She is currently researching on history and theory of public international law. You can follow her on Twitter @ntinatzouvala

Around a month ago the Wall Street Journal published an article entitled ‘The Anti-Vaccination Epidemic’ , which summarises an ongoing and worrying trend: diseases like mumps, measles and whooping cough are reappearing in the Western world. The reason for this is comeback is the growing anti-vaccination movement both in the US and Europe. Fueled by (dubious) publications that falsely associated certain vaccines (MMR) with autism, and by overemphasising highly exceptional cases of severe side-effects, the participants in anti-vaccination movements refuse to vaccinate their children. Apart from a heavy reliance to conspiracy theories, these movements also rely on the undeniable success the very social practice they oppose: we are no longer afraid of smallpox or rubella precisely thanks to being immunized against them at a very young age. The fact is that historically these diseases claimed the lives of millions of children and if the anti-vaccination movement prevails, they will do so again. The only way for parents to keep their children out of the ‘system’ without seriously endangering them is for them to fail politically: a few free-riders will still be safe given the overall eradication of the diseases due to the overall high rates of vaccination. But if the public campaign of these parents succeeds, then this shield will collapse and it is a matter of time before epidemics of smaller or larger scale return.

What is of interest here are the legal justifications provided by parents for their actions. (Un)surprisingly, there is a long history of civil liberties rhetoric in the UK against compulsory immunisation. After vaccination was made compulsory in 1840 the British society was in unrest and in 1878 a member of the Anti-Compulsory Vaccination League argued:

I. It is the bounden duty of parliament to protect all the rights of man.

  1. By the vaccination acts, which trample upon the right of parents to protect their children from disease, parliament has reversed its function.

III. As parliament, instead of guarding the liberty of the subject, has invaded this liberty by rendering good health a crime, punishable by fine or imprisonment, inflicted on dutiful parents, parliament is deserving of public condemnation.’

Given the general distrust towards governmental intervention at the time and importantly, given that the only conceivable rights at play seemed to be those of the parents, the law was amended in 1898. The amended version arguably introduced the concept of ‘conscientious objector’ in British law, allowing parents who ‘did not believe’ in the effectiveness of immunisation to opt out.

Contemporary protesters rely on the same legal and scientific (in the broadest sense of the word) arguments to justify their choice not to vaccinate their children. This post is not concerned with explaining how science has progressed since then rendering any overall challenge to the practice implausible. What is of our concern here is the modification of the legal background since the end of the 19th century. Two things need to be noted here: first, the classical, liberal conceptualisation of rights as shields against state interference is now complemented -to an extent- by an understanding that state intervention is necessary for the meaningful enjoyment of such rights, especially by vulnerable groups. Further, the conviction that children enjoy rights that are not identifiable with those of their parents has entered the legal equation. In the international realm this conviction is materialised through the Convention of the Rights of the Child (CRC hereafter), an instrument that according to UNICEF changed the way we see children from passive objects of care and charity to human beings with a distinct set of rights.

Sadly, any analysis based on the CRC is not applicable in the US, since the state has signed but not ratified the Convention. Nevertheless, it is applicable almost worldwide, and therefore we need to pay close attention to it. Directly relevant here are the Article 24 on the right to health and the General Comment 15 of the CRC Committee that elaborates the details of the right. Moreover, Article 3 para. 1 stipulating that all decision-making should be guided by the ‘best interests of the child’, Article 12 dictating that children should be provided ‘the opportunity to be heard’ and ‘due weight’ should be given to their opinions and finally, Articles 5 and 14 that guarantee parental rights are significant for this debate.

More specifically, Article 24 stipulates that children are entitled to the enjoyment of the ‘highest attainable standard of health’, they should not be deprived of their right of access to such health care services’, while there are explicit references to preventative health care and utilisation of technology, in order to promote the right to health. Moreover, we are confronted with one of these (rare) circumstances when there is a rather objective basis for judging what is ‘at the best interests of the child’. In principle, pluralistic societies with different and often conflicting understandings of what amounts to ‘good life’ grant parents with a wide margin of appreciation (in the non-Strasbourgian, ordinary sense of the term) in the making of such decisions. However, vaccinations are specific in two interrelated ways. General Comment 15 obliges the states to decide on Article 24- related issues according to ‘evidence-based public health standards and good practices’, setting therefore a rather objective, scientific standard for what is at the best interest of the child. Further, in its commentary on Article 3 the Committee clarifies that ‘best interests’ apply both to individual children and ‘children as a group’. This is of importance, since refusal to vaccinate one’s children is in many aspects dissimilar from refusing, for example, blood transfusion on religious grounds. In the latter case it is the specific child that is endangered (which is bad enough), whereas in the former there are legitimate general public health concerns. Moreover, this practice endangers these vulnerable children who due to genuine medical reasons cannot be vaccinated. Luckily, when immunisation levels are high these children’s health is protected thanks to our ‘herd immunity’. They might not be immune to the disease themselves, but they will probably never face the risk anyway, since everyone else is and therefore it is highly unlikely for them to be infected. Any state policy towards the anti-vaccination movement needs to take into account the rights and best interests of these children as well.

Another legal argument invoked by parents is that compulsory vaccination violates their (and their children’s) right private and family life under Article 8 of the ECHR. This argument does not seem to be legally tenable. In fact, the European Court of Human Rights had the chance to rule on Article 8 and compulsory vaccination in 2012 in Solomakhin v Ukraine. It needs to be stressed that when Solomakhin was subjected to compulsory vaccination he was a full- grown adult. Still, the court found that even though compulsory vaccination evidently interfered with his bodily integrity and therefore fell under Article 8, the interference was justified in a democratic society as it ‘could be said to be justified by the public health considerations and necessity to control the spreading of infectious diseases in the region.’ Arguably, if this is the case when it comes to a 35-year-old man, it is highly unlikely that the ECtHR would find a violation of the parents’ rights when it comes to vaccinating children 1 or 5 years old (these are ages the two rounds of MMR vaccination commonly take place), especially if we take into account the children’s rights under the ECHR and the CRC.

This does not necessarily imply that states are under an obligation to introduce compulsory vaccination for children. Questions of policy efficiency are of direct concern here and each state can make to appropriate choices taking into account the rights and interests of all individuals concerned and , of course, the interests of the society as a whole with a special focus on its more vulnerable members who arguably will suffer disproportionally from a disease outbreak. For example, in the light of the overall circumstances a state might choose to initiate an information campaign rather than resort to criminalisation of parents that refuse to vaccinate their children. Nevertheless, it needs to be stressed that the rights- based rhetoric of the anti-vaccination movement does not seem to take into account the actual international human rights documents and courts decisions. Further, this human rights rhetoric draws from an intellectual and political tradition with a very narrow understanding of human rights and, importantly, a very exclusionary conceptualisation of who is actually the bearer of these rights.

One final note: it is very easy and very appealing to dismiss these movements as manifestations of lunacy and poor education. Nevertheless, this attitude does not explain why and how these movements are fuelled periodically and more specifically now that no major publication (however ill-researched) on the topic has come out. My feeling is that- up to an extent- the revival or appearance of such movements is attributable to an overall distrust towards the state and a trend to conceptualise the private sphere exclusively as one of freedom and, in this case, care and love. Arguably, these sentiments are cultivated by states themselves through their turn to a neoliberal agenda that discredits any conception of public good and prioritises a very narrow understanding of what it means to live in a society, and even to be an individual. Interestingly, children’s rights and children’s welfare more broadly is one of the starkest examples of how less state involvement does not necessarily lead to more freedom. Rather it can well lead to an increase of private power, which being private, and in this case accompanied by love and affection, is not easily identifiable.

Anti-vaccination movements, children’s’ rights and private power

Legal Capacity and Consent to Sex – Reform for People with Disabilities

Today Senator Katherine Zappone published a Private Members Bill which aims to reform the law on consent to sex as it affects people with disabilities – particularly section 5 of the Criminal Law (Sexual Offences) Act 1993, which I have written about here previously. Continue reading “Legal Capacity and Consent to Sex – Reform for People with Disabilities”

Legal Capacity and Consent to Sex – Reform for People with Disabilities

Sexual Offences, Capacity and Disability – A Call for Rights-Based Law Reform

This post is inspired by the excellent RTE 1 documentary ‘Somebody to Love’ which aired last night and provided a sensitive and thought-provoking exploration of disability, relationships and sexuality. If you haven’t already watched the programme you can catch it on the RTE player here. At several points during the programme the participants mentioned the law which criminalises sexual activity with a person with an intellectual disability – which is worth explaining in further detail here.

Continue reading “Sexual Offences, Capacity and Disability – A Call for Rights-Based Law Reform”

Sexual Offences, Capacity and Disability – A Call for Rights-Based Law Reform

New Decision on Disability Discrimination from the Court of Justice of the European Union

EU-Capitals-LuxembourgThis post is cross-posted on the European Law Blog.

Yesterday, the Court of Justice of the European Union handed down its decision in the joined cases of Ring and Skouboe Werge (see judgment here). This ruling is particularly significant as it represents the first decision on the definition of disability under the Framework Directive on Employment 2000/78 since the EU concluded the UN Convention on the Rights of Persons with Disabilities (CRPD) in 2010. In essence, the Court moved away from the restrictive definition it adopted Chacón Navas, and instead interpreted the Framework Directive in light of Article 1 CRPD, which states that

“persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”

Continue reading “New Decision on Disability Discrimination from the Court of Justice of the European Union”

New Decision on Disability Discrimination from the Court of Justice of the European Union

Ireland's Assisted Decision-Making Bill and the UN Convention

On last night’s Late Debate programme on Radio One (which you can listen back to here), Minister Kathleen Lynch was asked to comment on the publication of the Assisted Decision-Making (Capacity) Bill (from about minute 52 onwards). This Bill has been placed in the A list of legislative proposals and the government has stated that is key to Ireland’s ratification of the UN Convention on the Rights of Persons with Disabilities (CRPD). Continue reading “Ireland's Assisted Decision-Making Bill and the UN Convention”

Ireland's Assisted Decision-Making Bill and the UN Convention

National Advocacy Service in the Spotlight

Yesterday, the Irish Times published an article highlighting a report from the National Advocacy Service (NAS) on the response to their advocacy work on behalf of people with disabilities. Having viewed the report, which has not been published online, but is being made available to any member of the public who requests it, I wanted to respond with some comments on the work which the NAS has undertaken since its establishment in 2011 and to make some suggestions about future developments in the provision of advocacy to people with disabilities in Ireland. Continue reading “National Advocacy Service in the Spotlight”

National Advocacy Service in the Spotlight

Reflections on the 4th International Disability Law Summer School

Last week, the Centre for Disability Law and Policy at NUIG hosted its 4th international summer school on the topic of ‘The Convention on the Rights of Persons with Disabilities: How to Use It’ (see here for programme). Podcasts of the various seminars given at the summer school will be uploaded to the CDLP website in the coming days for anyone who is interested, but at this point I wanted to provide some of my own personal reflections on the new ideas and theories presented at the summer school and how these might shape current trends in international and comparative disability law. I’ve chosen to focus on three seminars – led by Jerome Bickenbach on transformative values, Michael Bach on legal capacity and personhood and Theresia Degener on intersectionality, identity and discrimination  – but the full range of videos of the presentations can be viewed (here) for those interested. Continue reading “Reflections on the 4th International Disability Law Summer School”

Reflections on the 4th International Disability Law Summer School

European Parliament Recently Hosted International Seminar on Genetic Discrimination

We are delighted to welcome this guest post from Aisling de Paor, a Ph.D candidate in the Centre for Disability Law and Policy at NUI Galway, and Irish Research Council for the Humanities and Social Sciences (IRCHSS) scholar. Aisling is a graduate of NUI Galway (BCL) and University College Cork (LL.M).  Aisling qualified as a solicitor and specialized primarily in employment law.

On 6th March 2012, Marian Harkin MEP and Phil Prendergast MEP hosted a seminar on the topic of Genetic Discrimination. The event was organised by the Centre for Disability Law and Policy, NUI Galway, in conjunction with the European Disability Forum, and took place in the European Parliament, Brussels. This international seminar, which was chaired by Andre Gubbels (Belgian Ministry), was the first of its kind in the European Parliament and brought together a diverse range of leading experts in the area, with the objective of exploring the case for a European level response to protect the privacy of genetic information and to prevent genetic discrimination. The seminar highlighted the interdisciplinary nature of this area and focused on the interaction between genetic science, technology, ethics and the law, and in particular, how best to address this complex area. The event also looked at the challenges and practical problems that arise when attempting to Continue reading “European Parliament Recently Hosted International Seminar on Genetic Discrimination”

European Parliament Recently Hosted International Seminar on Genetic Discrimination