The aim of this thesis is to create a broader framework for agency that is inclusive of persons with cognitive disabilities. The first chapter establishes that persons with cognitive disabilities have historically been excluded from making decisions, and their autonomy was neglected and disrespected. Rather than being integrated into society and assisted with making decisions, persons with cognitive disabilities either had their decisions made for them or were manipulated into situations that they may not have chosen. “Agency” and “autonomy” were narrowly understood as correlating with individuals exercising their intellectual decision-making capacities rather than with joint projects that people can partake in together. The social structure that can restrict or enable one’s agency was ignored. Since agency was “individualized” and since persons with cognitive disabilities are often located in environments where they are helped by caregivers and trustees who assist them in making decisions, it is not surprising that cognitively disabled persons were historically marginalized from liberties that were associated with decision-making.
In an effort to broaden agency and autonomy to include cognitively disabled persons, the second chapter explores literature that incorporated the social environment into our understanding of agency. Two models or schemas that feature in the literature on cognitive disability and agency are paternalistic models and extended mind models. Both models have their flaws. Paternalistic models overemphasize how persons without cognitive disabilities restrict the decision making powers of persons with cognitive disabilities. Extended mind models have philosophical issues related to their ontological claims. There is also the associated moral worry that if extended mind theory is true and we understand trustees as extensions of the disabled individual, then there is a risk of negating the humanity of the trustee or the cognitively disabled person. Extended mind models risk treating caregivers, proxy decision-makers, and trustees as objects because they reduce them to the functional parts that are used by the person needing help. Rather than acknowledging the caregiver as a person with a will, biases, beliefs, well-being and intentions, extended mind theories threaten to leave central parts of the caregiver’s humanity unacknowledged. A better theory of agency incorporates both the caregiver and the disabled individual into the schema with the important features of their humanity acknowledged.
The third and fourth chapters attempt to ameliorate the problems that are highlighted in the second chapter by presenting and defending a framework that interprets care relationships, and the help that one receives when acting inside them, as a type of shared agency. I call this framework “helped agency” (HA). The HA framework ameliorates the issue associated with the paternalistic model, because it expands the decision making powers of persons with cognitive disabilities to include situations where persons with these disabilities can be helped by trustees to make self-governing decisions. It also avoids worries associated with understanding care relationship within an extend mind theory because the HA theory integrates helpers as central figures of the decision-making process. This theory includes both the cognitively disabled person and the caregiver, since both characters play integral parts in decisions and actions. Thus, it is a better framework for understanding the agency and autonomy of cognitively disabled persons, and it respects the dignity of the helper and disabled individual better than other theories presented in the literature.
The conceptual framework of HA can also expand to encompass when the non-disabled are helped. We are all equal because we all require assistance from time to time. We all face situations where we need another’s assistance to accomplish difficult tasks. When we are young, we all require the helping care that is described by HA. As we age, we may require more assistance from others when we begin to feel the corporeal effects of old age. Furthermore, with current advances in medical sciences that can extend our lives with treatments and not entirely cure us, the population of physically and cognitively disabled persons grows and changes. To embrace HA in the situations where we need help from others and provide assistance when needed is to embrace at least one aspect of how we are agents and how we are autonomous. By acting with HA as a practical guide, one can respect the dignity and autonomy of persons who may struggle to make decisions alone, and respect the dignity of those who provide care. To acknowledge HA is to appreciate another way of being human that has been previously underappreciated: being helped to accomplish tasks and helping others to accomplish their goals. HA broadens the boundaries of agency and autonomy to encompass persons with cognitive disabilities so that policies can be formed to empower them to carry out plans of action consistent with their interests and values. With HA as an operating assumption about how persons with cognitive disabilities make decisions, policies and practices can be created so that persons with cognitive disabilities can be appropriately acknowledged and morally responded to as autonomous agents. In sum, persons with cognitive disabilities have dignity to be respected, and it is through HA that we begin to understand how we can respect it.