‘My son has lost his dignity’: dignity of persons with profound intellectual and multiple disabilities

Abstract

The objective of this study is to describe and evaluate understandings of dignity of persons with profound intellectual and multiple disabilities. Intrinsic dignity cannot be lost and is inherent to being a human. Also, dignity is the extent to which these persons have enough positive experiences (individual dignity), have dignity in their relationships with familiar others (relational dignity), or with unknown others (societal dignity). While intrinsic dignity sometimes fails to include experiences of these persons and their family members, the other understandings are gradual, which means that these persons can lose their dignity. The understandings express a concern: the life of the person with severe disabilities is, respectively, worth respecting, living, sharing and caring about. We conclude that they can have dignity and that, in case of disagreement, it is important to clarify which dignity is meant and to make explicit the concerns at stake.

Points of interest

• A mother stated, ‘My son has lost his dignity,’ while other parents assert that their child, like any other human being, cannot lose his dignity. The paper clarifies these differences between understandings of dignity.

• In this study, four understandings of dignity of persons with profound intellectual and multiple disabilities are evaluated. This means that their strengths and limitations are described.

• Parents and others, referring to dignity of persons with severe disabilities, want to express a concern, this paper argues. They want to make clear that the lives of these persons are worth respecting, living, sharing or caring about.

• Parents, health care professionals or others who disagree on dignity of a person with severe disabilities, this article concludes, should open themselves up for the other’s concerns. While their concerns may differ, they are both obviously concerned about this person, which is the starting point for providing good care and support.

Keywords:

• Dignity
• profound intellectual and multiple disabilities
• intellectual disability
• developmental disabilities
• ethics
• human rights

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by NWO, the Dutch Research Council (Nederlandse organisatie voor Wetenschappelijk Onderzoek), under Grant 319-20-004.