Social Justice All Around in Caregiving Relationships

Much literature on justice and caregiving by families focuses on obligations of or to the care giver(s). This overshadows the perspective of the care receiver and contributes to the disadvantage experienced by people with disabilities by ignoring or minimizing their agency when they are care receivers. I will therefore argue in this presentation that, if health policy is to be socially just, it must reflect the perspectives of everyone involved in caregiving, acknowledging obligations of and to all parties. This provides recognition of people with disabilities as equal partners in caregiving, which helps to reconceptualize and destigmatize being a care recipient.

The so-called “burden” of family caregiving falls disproportionately to female family members and is often assumed to be a matter of private rather than public concern. This constitutes an injustice for recipients and givers of care as well as for women. I will begin with a description of this injustice and then discuss briefly the ways in which the “burdens” of caregiving are affected by social policy, just as the “burdens” of disability are in part a reflection of policy decisions. Next, I will sketch an account of obligation to create socially just caregiving relations based on Iris Marion Young's social connection model of responsibility. Finally, I will describe socially just caregiving from the perspectives of the care recipient and the care giver and outline how these perspectives could be integrated in concrete policy proposals that meet the requirements of justice for people with disabilities and their family members.