The Greek origin of the concept ‘horizon’ refers to a limit, and this meaning shapes how we use the concept today. The horizon could be far away, but it marks a boundary: we cannot go beyond it. This limitation is no longer self-evident if we add the word radical, as the editor has done in this series. A radical horizon instead invites us to question the limit: it asks if our horizon is indeed the limit and if we could situate it somewhere else. The history of disability offers a particularly relevant and interesting way into this question. From a disability perspective, we can always question what we consider to be the horizon. In this short article, I explore how people with cognitive disabilities and their allies have challenged a fundamental form of domination in recent decades: the idea that a human person must be autonomous and able to make decisions independently to have full human rights. In doing so, they have not only gained recognition for disabled people in international human rights, they have opened a new horizon for how we understand the human person itself.
Not so long ago, the United Nations (UN) adopted the Convention on the Rights of Persons with Disabilities (CRPD, 2006), which recognises and aims to protect the human rights of disabled persons. This international convention explicitly brought disabled people within the horizon of international human rights law. However, as several scholars such as Theresia Degener, Frédéric Mégret, and myself have argued, the Convention can also be seen as a radical horizon in the sense that it opens new, unforeseen horizons. This becomes particularly clear if we look at Article 12 and its history.
At first sight, Article 12 simply recognises that disabled people have the right to ‘equal recognition before the law’. However, the diplomatic negotiations from 2001 until its adoption in 2006 reveal that the legal capacity that disabled people enjoy today was not always in sight. In fact, several diplomats questioned whether people with (severe) cognitive disabilities should be recognised as having legal capacity at all. Were such people not in need of representatives who could better oversee the consequences of their acts? These arguments were challenged by disabled people and their allies, who steered the debate towards recognition of legal capacity. Instead of transferring disabled people’s decision-making to representatives, they advocated for safeguards to ensure that people with cognitive disabilities could access the ‘support they may require in exercising their legal capacity’. In other words, the aim was not to deny or replace disabled people’s decision-making, but to recognise their legal capacity and provide the support they might need to exercise it themselves.
The adoption of Article 12 in 2006 was a break away from the so-called ‘substituted decision making’ and guardianship arrangements. These arrangements, followed by many states, allowed representatives, such as family members or guardians, to make decisions on behalf of disabled people – often at the expense of their ‘rights, will and preferences’. Decades earlier, the 1971 UN declaration on the rights of ‘mentally retarded persons’ had less radically stated that people with cognitive disabilities were entitled to the same rights as other human beings ‘to the maximum degree of feasibility’. Mentioning a degree of feasibility was already at the time seen by the allies of disabled people as an attempt to take their rights less seriously. This declaration had other weaknesses: it took guardianship for granted and gave scientific experts a key role in assessing the capacity of people with cognitive disabilities. In the negotiations on the 1971 declaration, the more radical voices calling for the recognition of unlimited equal rights for people with cognitive disabilities were ignored. These voices were more successful during the negotiations on Article 12 of the 2006 Convention partly because of the collaboration between different disability groups. These included psychiatry survivors who understood the importance of recognising legal capacity and safeguarded support.
Article 12 opened a new horizon by recognising the rights and agency of people with cognitive disabilities, protecting them from the domination of others. Yet, it also opened a new perspective on the human person in international law. According to Gerard Quinn, an international lawyer and ally of disabled people who took part in the negotiations, Article 12 unintentionally resulted in the acknowledgement of what he calls ‘shared personhood’. This refers to the idea that the human person is always part of broader (non-)human networks and cannot live without support from others. Whereas (international) law often assumes that the human person is a rational autonomous subject, Article 12 challenges us to acknowledge not only autonomy but also ‘the myriad of supports – formal and informal – that we all rely on’. With his interpretation in retrospect, Quinn applies the Convention to all humans and not only disabled people. By doing so, he expands the horizon of international law beyond the autonomous individual to a more relational view of humanity.
By taking people with cognitive disabilities seriously and universalising the role of support, the Convention offers a way of thinking about how we can live together across difference and relate to one another. However, the Convention also shows us that changes in international law do not always result in changes on the ground. Are there actually examples of bringing shared personhood into practice, in ways that the ‘rights, will and preferences’ of cognitively disabled people have been respected? In her book Unlearning Eugenics, historian Dagmar Herzog has pointed to the development of several life-sharing initiatives after the Second World War. These include the anthroposophical Camphill movement, communities founded by Fernand Deligny and Jean Oury in France and by Duncan and Daniele Mercieca in Malta, and the ecumenical L’Arche movement. These are all life-sharing initiatives that have facilitated intensive communal living between people with and without cognitive disabilities.
In a new research project, I hope to study the history of life-sharing initiatives in more detail. Existing and exploratory research already shows how shared personhood has been explored in practice. I have, for instance, critically analysed a book by the Dutch theologian Henri Nouwen in which he reflects on his friendship with a young man named Adam Arnett. Initially, Nouwen understood his relationship with Arnett within the context of a Canadian L’Arche community in the mid-1990s: one in which he was responsible for caring for the severely disabled Arnett. He saw Adam as being dependent on the support of autonomous people like himself. He discovered, however, that Arnett also cared for him and became his friend, teacher and mentor. Their friendship can be understood as a form of shared personhood which became possible within a community that took the agency of people with cognitive disabilities seriously.
It is interesting then, that life-sharing, as promoted by organisations such as L’Arche, has been framed by some scholars as being in opposition to a human rights approach to disability. How is this possible? In the remainder of this article, I briefly discuss the ideas of Dutch theologian Hans Reinders, whose work clearly illustrates the possible tension between rights and life-sharing initiatives.
In his 2000 book, The Future of the Disabled in Liberal Society, Reinders addresses how people with profound cognitive disabilities challenge liberal society. Against the background of new developments in prenatal screening, he asked whether they will have a future in such a society. Liberal societies, he argued, assume that citizens are capable of rational and autonomous thought. In his view, people with cognitive disabilities do not seem to fit within this liberal horizon: they are often not seen as rational and autonomous individuals. According to Reinders, liberalism is, moreover, reluctant to prescribe how citizens should live a good life together and therefore does not offer a view on how different citizens including people with severe cognitive disabilities should relate to each other.
What did Reinders’ alternative to liberalism look like? In the final part of his 2000 book, he highlighted the relevance of personal relationships of support, love and friendship for people with cognitive disabilities. He contrasts personal relationships with the contractual relationships which dominate liberal societies and are conditioned by expected benefits. According to Reinders, the benefits bestowed by love and friendship are a consequence of the relationship and are no condition as in the case of contractual relationships. Reinders further develops this argument in his 2008 book Receiving the Gift of Friendship. There, he is more explicitly critical about rights: ‘the recognition of rights includes people in the community of citizenship, but it does not, per se, include them in the community of the good life’. With this statement he refers to the fact that a liberal rights based world cannot provide people with disabilities a good life, which requires relationships rooted in friendship, support and care. Liberalism has importantly legally recognised disabled people as citizens with equal rights, but they need – as does everyone else – more than that. Under liberalism, disability rights have unintended consequences because they prioritise individualism over community and social belonging.
Reinders underlines his plea for friendship with examples from life-sharing communities such as L’Arche. He sees, in terms of this Radical Horizons series, the practice of friendship with people with cognitive disabilities as a way of overcoming a liberalism that dominates people with abstract concepts such as human rights. In his view, people could better invest in friendships instead of human rights policies. However, the history of Article 12 shows that human rights and friendship do not necessarily stand in opposition. During the diplomatic negotiations, disability advocate Sue Swenson for instance, shared the story of how her son Charlie, who communicates in non-traditional ways and has significant support needs, informed his family and support team about his wish to move out and live on his own. Drawing on this experience, she emphasised ‘the risks of guardianship – of having one voice speak for Charlie – and the need for a collective approach to ensure that any decision made is, in fact, Charlie’s decision’. The drafters of the Convention integrated the possibility of such a collective approach in Article 12 and showed that the autonomous individual need not be the limit. Humans rely on ‘myriads of support’ and careful attention to their interdependencies is probably more relevant than ever.
Looking back at this brief history of the human rights of people with cognitive disabilities, we can see how they and their allies have challenged the idea that a human person must be autonomous. In doing so, they have shaped a new horizon by advancing and embodying the idea of ‘shared personhood’ – a way of thinking and doing that recognises human interdependencies. While some scholars have argued that the human rights project cannot really include people with cognitive disabilities, this view overlooks the extent to which the 2006 Convention has already opened a new horizon in and beyond human rights law.