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The ‘sanctuary’ of choice and liberty

Sanctuary is a 2016 feature film set in the world of people with intellectual disabilities. Just released on DVD, the movie tells a touching and funny love story about Larry and Sophie, two people who long to be together in a world that does everything to keep them apart. The film is set in Galway, directed by Len Collin, and released by Zanzibar Films in association with the Blue Teapot Theatre Company.

Sanctuary is both hugely enjoyable and ferociously relevant. In 2011, the census found that approximately 600,000 people in Ireland reported having a disability. That is around 13 per cent of the population, according to the National Disability Authority.

As a result, the issues raised in Sanctuary are relevant to virtually every family in Ireland. One of the film’s key themes relates to liberty and having the freedom to make your own choices when you have a disability. This is an issue of great relevance in contemporary Ireland for many reasons, not least of which is the Assisted Decision-Making (Capacity) Act 2015.

The 2015 Act was passed by the Oireachtas and signed by President Michael D Higgins on 30 December 2015. Preparations for implementation are underway. The new legislation will place the “will and preferences” of persons with impaired mental capacity at the heart of decision-making in relation to “personal welfare” (including healthcare) and “property and affairs”. 

This will include some, but by no means all, persons with intellectual disabilities because mental capacity is now to be “construed functionally”. This means that while a person might lack mental capacity in relation to one specific area (eg, finance), he or she might have mental capacity in relation to another (eg, healthcare). And while a person might lack mental capacity at one time, he or she might have mental capacity at another.

All interventions under the new Act must be made “in good faith and for the benefit of the relevant person”. The 2015 Act also presents a set of principles, including a presumption of mental capacity, provision of information and assistance, identifying clearly the necessity for any intervention, minimisation of restriction, dignity, bodily integrity, privacy and autonomy. Critically, making “an unwise decision” will not indicate lack of capacity. And for those with impaired mental capacity, the Act will introduce three levels of supported decision-making, along with new and revised procedures for “advance healthcare directives” and “enduring powers of attorney”.

The provisions of the legislation are complex and challenging but they are also hugely important, especially for people with intellectual disabilities. In 2004, the Government launched the National Disability Strategy in order to underpin the participation of people with disabilities in Irish society. The strategy built on existing policy and legislation, including the policy of mainstreaming public services for people with disabilities.

In 2013, a new National Disability Strategy Implementation Plan was prepared and agreed by the National Disability Strategy Implementation Group. The Plan emphasised the need for “a whole-of-Government approach to advancing the social inclusion of people with disabilities”. The 2015 legislation is another important advance in this area and will hopefully progress briskly from this point onwards. The appointment of a Director of the Decision Support Service in October 2017 was a step forward.

The Dáil’s decision to ratify the United Nations Convention on the Rights of Persons with Disabilities (CRPD) in March 2018 was also significant. The purpose of the CRPD (2006) “is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity”. The Convention specifies 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”.

Dismantling these barriers is vital. It requires not just specific policy measures, but also a broad cultural shift in how disabilities are viewed. To this end, the CRPD emphasises a range of principles, including respect for inherent dignity, individual autonomy, independence of persons, non-discrimination, full and effective participation and inclusion in society, respect for difference, and acceptance of persons with disabilities as part of human diversity and humanity. The Convention also emphasises equality of opportunity, accessibility, equality between men and women, respect for the evolving capacities of children with disabilities, and respect for the right of children with disabilities to preserve their identities.

While Ireland signed the CRPD in March 2007, we only started formal ratification in 2018. And while the Convention undoubtedly presents challenges in a number of areas, it is a uniquely important articulation of the rights of persons with disabilities.

This issue is not new. In 1907, Dr Conolly Norman, a progressive medical superintendent at the Richmond District Asylum (later St Brendan’s Hospital, Dublin), lamented the absence of services for people with an intellectual disability. Using the language of the times, he said that “it is neither wise nor humane to neglect this class as they are neglected in this country”. Clearly there was — and still is — much to be done.

And that, essentially, is why Sanctuary is so important. The film explores key issues relating to disability in Ireland today, celebrates ability in people with disability, and is also hugely enjoyable to watch. I warmly recommend the DVD.

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