A young Australian with autism shackled to a hospital bed on his 21st birthday. 60,000 signatures later…

A young Australian with autism shackled to a hospital bed on his 21st birthday. 60,000 signatures later…

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As part of our Right to Act blog series we’ve told success stories where people have had their legal capacity restored. We’d like to tell a positive story here, this time from Australia.

The incident started with a young man, James Pascoe (pictured above), being strapped and shackled to a hospital bed where he remained on his 21st birthday. Within a month, a petition of over sixty six thousand signatures forced the Premier’s office to step in, freeing Mr. Pascoe and provide him (and his family) with adequate support.

James’ parents, Bronwyn and Allan Pascoe released a public petition 11 days into his detention. It read:

James has Autism Spectrum Disorder. We’ve worked so hard to care for him and to make sure he can live a full and happy life. But after giving up employment to stay at home, reducing our income, paying for carers, and being brought to depths of despair and exhaustion we could not imagine – we pleaded for the government to help us.

I work as a nurse, and I can tell you that what we got instead was gross incompetence. … We pleaded for them to listen that he was self-harming. In writing, and over the phone. Nothing. They wore us to the core, not providing sufficient supports to maintain his care at home. We were exhausted and no choice but to demand respite care in the place that was deemed by DHS to be appropriate long term accommodation for James. However, it proved to be inappropriate due to insufficient space inside and outside for James to be able to release his energy when stressed. Although the service that provided the housing have acknowledged that they could not support our son at this accommodation with the supports recommended by DHS… It’s heartbreaking to think just 2 years ago he was happily walking around SeaWorld with his grandmother and Aunty. – now thanks to mistreatment he’s anxious and lashes out in fear and anxiety and lack of coping due to his unresolved grief and loss.

… He does not require medical treatment, he requires understanding, love and support being shackled and chemically restrained contradicts the care that he requires.

The full petition can be read here. The Pascoe’s account provides an insight into the way citizens with disabilities experience deprivations of liberty in sometimes unexpected and shocking ways. The petition also captures a sense of some families experience of disability service gaps, and of the way crises can emerge from unresponsive support.

The public campaign also speaks to the power of individuals and families to achieve change. The petition gained significant public support and within a matter of days, over 50,000 signatures were gathered. On the 15th of December, within a month of posting the petition, the Pascoe family made the following announcement:

We’re so relieved to tell you that the government have listened. James is now out of hospital, in supported accommodation – and unshackled from that awful bed. We couldn’t have got here without you. Thank you so much to all 66,000 of you who’ve signed our change.org petition… We’d spent years fighting DHS to not neglect James’ care. All we got was silence. It spiralled into James being shackled to a bed, with no help in sight. But you helped bring his treatment to light… It forced [Victorian Premier] Daniel Andrews and Victorian Disability Minister Martin Foley to respond and meet us. For once, today is a good day. We can finally start help James get his life back on track now that he’s in supported accommodation. We can’t thank you enough.

In the wake of the incident, from the perspective of law, policy and practice, many questions remain. Is this a common experience? How many people who do not have the resources to demand action are continuing to suffer in silence? What of those individuals without family and other informal advocates? What was the legal basis for James’s deprivation of liberty, and what were the safeguards to monitor such interventions?

This  incident is in no way specific to Australia. Advocates throughout the world, from low-income to high-income countries highlight how people with disabilities face deprivations of liberty and lack of adequate support. Only recently, Liz Sayce, CEO of Disability Rights UK responded to increasing controversy about the deprivation of liberty of UK citizens with disabilities. She wrote:

We believe that anyone deprived of their liberty should have strong human rights protections. It should not ‘just happen’ that people are deprived of their freedom – placed in a care or nursing home with no option to leave – because neither they nor their family have the knowledge or confidence to object. People who are struggling with capacity to make decisions may want to live in their own home with intensive support – as some people with dementia do, for instance – and placing them in a care or nursing home when it is not where they want to be raises profound questions of human rights.

The deprivation of liberty experienced by James Pascoe may more clearly activate other rights in the Convention (such as the right to be free from torture or cruel, degrading or inhuman treatment [Article 15] and the general right to liberty and security of the person [Article 14]). Yet the right to legal capacity on an equal basis with others remains important. It is a subsidiary to the right to equality before the law more generally, and it can serve – in what is a useful metaphor advanced by Professor Gerard Quinn – as a sword (to claim resources to exercise rights) and a shield (to protect oneself from incursion by the state and others into the personal sphere). Further, all the rights of the Convention are intertwined. Article 12, for example, can be read alongside Article 19 on ‘living independently and being included in the community’ which directs that States must ensure:

  1. b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community; (c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.

Article 19 and Article 12 connect in ways that create the building blocks for a person to have full legal capacity. Such a broad view aims to ensure full chances to flourish as a human being on an equal basis with others, free from barriers (such as lack of housing and support for community inclusion).

The Pascoe family’s final message of thanks to their supporters included a call for all individuals and families who have had similar experiences, to contact their political representatives. They asked others ‘help show him this isn’t an isolated incident.’ This request should be echoed all over the world.

 

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This document has been produced with the financial assistance of the European Union. The contents of this document are the sole responsibility of PERSON (Partnership to Ensure Reforms of Supports in Other Nations) and can under no circumstances be regarded as reflecting the position of the European Union.