An underlying question of this paper is: How does society and the state best protect and enhance autonomy and independence? In this section we turn for guidance to the philosophical distinction between negative and positive approaches to defining liberty. To draw upon Isaiah Berlin’s distinction between negative and positive liberty, the traditional approach to protecting autonomy has been one of negative liberty. That is, the state does not intervene to determine what life paths are ‘best’ for individuals to pursue. The state does not define the ‘good life’ for individuals; rather, it protects their rights to define and pursue this for themselves. The role of the state in this view is to set the broad constraints for individual choice and decision making through criminal, contract, corporate, civil, and health law, etc.
A primary mode of protecting autonomy in this negative liberty approach is to define who cannot exercise autonomy. In this view, drawing a boundary between the competent and incompetent has been seen as a ‘necessary evil.’ It ensures freedom from restraint, and the right to privacy and autonomy for those who can meet the standards of competence to exercise autonomy. This boundary draws a zone that limits state intervention in order to protect the exercise of autonomy. The state defines a minimum threshold in order to protect the integrity of the various transactions, contracts and agreements individuals make with others, thus protecting the autonomy of all the parties. Acting in a manner that demonstrates independent capacities to understand information and appreciate the consequences of one’s actions and decisions is the hallmark of this approach. Those unable to do so are defined as mentally ‘incompetent’ or incapable of exercising autonomy. Removing from persons their legal capacity to transact with others is justified not only in the name of protecting the integrity of the transaction, but also of protecting the person. A standard statement of the principle is as follows: “The obligation to restrict the liberty of even clearly incompetent people only as far as it is necessary to do so for protecting them from harm.”
The ethical and legal question in this classic approach to autonomy in bio-medical ethics and the theory of informed consent is on what basis, by what criteria, should autonomy be restricted? For centuries, moral and political philosophy and the law have established criteria of reason and rationality as the basis on which autonomy would be respected and restricted. When individuals have not met the legal tests, with the first dating back to Roman law, their autonomy has been restricted.
While autonomy and negative liberty are often equated as one and the same thing, they can be distinguished. Liberty is the principle which founds and grounds the right to autonomy. We can achieve and exercise our autonomy in many ways. We can say no to touch and intervention and constraint by others. We can choose to speak up, provided we have the space and protection to do so, or we can choose to remain silent. We can choose to withdraw from relations with others. We can also exercise our autonomy through the exercise of the associated right to legal capacity – our legal right to enter relationships and agreements with others that give effect to our individual decisions.
Negative liberty is the principle used to claim protection against unnecessary state intrusion into citizens’ private and personal life and agreements and contracts they make with others. It is a particular view about what is required to protect against constraints on freedom. What we need is the absence of coercion, regulation and intervention by the state and other entities. In this view, what Martha Albertson Fineman calls the ‘myth’ of autonomy, it is individual separation and freedom from others and from the state that is valued:
Autonomy… connotes on an ideological level that an individual who conforms to the dominant notions of independence and self-sufficiency is both freed from the prospect of regulatory government action and freed through governmental structures from interference by other private actors. The freedom through the government is the nonintervention point stated in positive terms – the right to be let alone is also the guarantee of privacy. In establishing and adhering to a norm of nonintervention and regulation for those individuals deemed self-sufficient, the state grants them autonomy.
In a positive liberty view of autonomy we do not exercise our self-determination as isolated, individual selves, but rather ‘relationally,’ interdependently and intersubjectively with others. We evolve and realize capabilities for autonomy in relation to others and through social, economic and political conditions that make this possible. Catriona MacKenzie and Natalie Stoljar define this approach to autonomy as follows:
The term ‘relational autonomy’… does not refer to a single unified conception of autonomy but is rather an umbrella term, designating a range of related perspectives. These perspectives are premised on a shared conviction, the conviction that persons are socially embedded and that agents’ identities are formed within the context of social relationships and shaped by a complex of intersecting social determinants, such as race, class, gender and ethnicity. Thus the focus of relational approaches is to analyze the implications of intersubjective and social dimensions of selfhood and identity for conceptions of individual autonomy and moral and political agency.
A relational understanding of autonomy is particularly important for those who require the support and assistance of others in communication, understanding and representing themselves to others; the case for many people with intellectual, cognitive and/or psychosocial disabilities. In these formulations of what we could call the positive liberty view of autonomy, the state has a positive obligation to maximize the exercise and enjoyment of autonomy by providing individuals with the goods and services they require for this purpose, and for developing their own decision-making capabilities to exercise their autonomy.
Over the 20th century a positive role of the state in enhancing and protecting individual autonomy evolved – to prevent against coercion in contracting and to protect the interests of vulnerable parties, and to ensure access to economic, social, and cultural goods that enabled people to maximize their pursuit of a good life. There are ongoing debates about the appropriate extent of the welfare state – whether about public education, publicly-funded health services, the role of labour unions and collective agreements in employment contracts, the social safety net, and provision of state-funded individual supports. Essentially, these have been debates about the positive duties and obligations of the state and other parties to enable citizens to achieve social and economic well-being; including where this involves regulating contractual arrangements like labour agreements, and other forms of agreement between parties like informed consent for health care. Despite a growing recognition of the positive duty of the state with respect to protecting and enhancing autonomy, its institutionalization has continued to run up against the same limit point: the assumption that there will always be some for whom autonomy, and thus legal capacity, cannot be realized.
How do we best formulate the role of the state in ensuring people have access to the basic goods and services that will enable them to identify, plan for and pursue choices that enable a good life? How do we formulate this duty to maximize autonomy, informed now by the CRPD, and its recognition of an equal right to legal capacity without discrimination on the basis of disability?
In recognizing this positive duty, we expand the question posed at the outset of this paper as follows: What principles and considerations should be applied in ensuring individuals have the supports and accommodations needed to maximize their autonomy without discrimination on the basis of disability, and what, if any, limitations are reasonable to apply in su