ISSN: 1522-5658
Supplement 12 (2015)




Table of Contents

Caring for Persons with Intellectual and Developmental Disabilities: Ethical and Religious Perspectives

Edited by Jos V. M. Welie, Creighton University

Introduction: The Search for an Ethically Sound Approach to Caring for Persons with Intellectual and Developmental Disabilities (pp. 1-7)

Jos V. M. Welie, Creighton University
William F. Sullivan, University of Toronto, Canada
[ Abstract ] [ Introduction PDF ]

1. Inside Out not Outside In – A Change of Attitude for All: A Self Advocate’s Vision for Those with Intellectual and Developmental Disabilities (pp. 8-12)

Kareem Elbard, Movie Usher at Cineplex Entertainment, Hamilton, Ontario
[ Abstract ] [ Chapter 1 PDF ]

Anthropological and Theological Perspectives

2. Persons with Intellectual and Developmental Disabilities: Philosophical Reflections on Normalcy, Disability, and the Imago Dei (pp. 13-38)

Jos V. M. Welie, Creighton University
[ Abstract ] [ Chapter 2 PDF ]

3. Beyond Inclusion: Recognizing the Humanity of the Profoundly Impaired
(pp. 39-45)

Peter Comensoli, Bishop of Broken Bay, Pennant Hills, Australia
[ Abstract ] [ Chapter 3 PDF ]

4. Eugenics in Modern Societies (pp. 46-53)

Christoph von Ritter, RoMed Klinik Prien a. Chiemsee, Germany
[ Abstract ] [ Chapter 4 PDF ]

5. Sexual Creators and Intellectual and Developmental Disabilities: Being Human in Different Ways (pp. 54-67)

Christine Jamieson, Concordia University
Hazel Markwell, University of Toronto, Canada
[ Abstract ] [ Chapter 5 PDF ]

6. Prayer Time with Tessa: Ethical Reflections about Paternalistic Decision Making on Behalf of Cognitively Impaired Persons (pp. 68-83)

Paul A. Babcock, Grand Coulee, WA
Jos V. M. Welie, Creighton University
[ Abstract ] [ Chapter 6 PDF ]

Health Care

7. Ethical Practices and Policies in the Health Care of People with Intellectual and Developmental Disabilities and Their Families: Framing the Issues (pp. 84-93)

William F. Sullivan, University of Toronto, Canada
John Heng, King’s University College, Canada
[ Abstract ] [ Chapter 7 PDF ]

8. “Nothing about Us without Us”: Understanding Mental Health and Mental Distress in Individuals with Intellectual and Developmental Disabilities and Autism through their Inclusion, Participation, and Unique Ways of Communicating (pp. 94-109)

Elspeth Bradley, University of Toronto, Canada
Phoebe Caldwell, University of Bristol, UK
Marika Korossy, Toronto, Ontario
[ Abstract ] [ Chapter 8 PDF ]

9. Promoting Health and Wellbeing in Persons with Intellectual and Developmental Disabilities (pp.110-21)

Nicholas Lennox, Lyn McPherson, and Kate van Dooren, University of Queensland, Australia
[ Abstract ] [ Chapter 9 PDF ]

Guidelines

People with Intellectual and Developmental Disabilities and Their Families: An Ethical Framework and Recommendations for Health Care Practices and Policies

Consensus Statement of the 6th International Colloquium of the International Association of Catholic Bioethicists (IACB) (pp. 122-49)

William F. Sullivan, University of Toronto, Canada
John Heng, King’s University College, Canada
[ JRS Note ] [ Consensus Statement PDF ]

The health care for persons with a developmental or intellectual disability (IDD) has greatly improved in recent decades, such that they live longer and enjoy better health. Paradoxically, eugenic efforts to prevent persons with IDD from even being born, marginalization of members with IDD from our communities, and extensive health care disparities persist as well. These concerns provided the impetus for the International Association of Catholic Bioethicists to devote its sixth bi-annual international colloquium (Rome, 2013) to an ethical reflection on the care of persons with IDD. Reworked versions of several of the papers prepared for and presented at the colloquium were combined to create a JRS Supplement. In this introduction to the volume, the authors briefly present the main themes covered and conclude that the ethical insights gained merit the attention not only of those who are engaged in health care of persons with IDD, but of care givers of all patients.
A person with intellectual and developmental disabilities reflects on his own experiences with himself and others.
Most theologians today forcefully reject the idea that a person with Intellectual and Developmental Disabilities (IDD) could be God's creative error, a person who should have been healthy or else never been born. On the other hand, the claim that a person with IDD is created fully in the image of God seems perplexing, for this claim not only says something about the nature of persons with IDD but also about the nature of God: Is it possible to imagine that God could be intellectually disabled? In this paper, the author asks us to reflect on why this topic is so disturbing – a point already raised by Pope John Paul II – and then contrasts this perspective with the historically widespread view that individuals with IDD are somehow changed from their created state of being, possibly by the devil. Next, we return to the major premise that appears to inform both common thinking and traditional Christian theology at least since Aquinas, but which actually harkens back to Plato: intellect and other rational capacities are privileged signs of the affinity of human beings to God, who is all-powerful. The author questions this premise and argues that it presumes an all-too-human understanding of power. A different understanding of the nature of God also opens the door to a different understanding of the way all of us, including persons with IDD, have been created in the image of God.
Some theologians have recently argued that to fully recognize the humanity of the profoundly impaired we must propose a re-imagined Christian anthropology that involves, in part, adopting some form of a paradigm of inclusion. Here, that approach is summarized and given critical attention. In particular, the work of Hans Reinders is considered as a significant Christian theological position that holds such a view, but which is problematic. The Inclusion Paradigm is challenged by an account of human being that distinguishes between a human nature that is determined but not historically conditioned, and our existence, which remains undetermined while it is being lived out. This better builds an anthropology that secures the profoundly impaired in their humanity, and takes seriously the condition in which they live out their lives.
This paper seeks to explore and analyze the different manifestations of eugenics in modern societies. First, the modern tools of eugenics will be outlined. Next, an analysis of the different levels of eugenic activities, i.e., the global, national, and individual level, will be presented. Finally, the basic errors of eugenic thinking and alternatives to eugenic thinking will be discussed.
The essay addresses the challenge of protecting persons with intellectual and developmental disabilities who wish to express their sexuality but may be vulnerable, while also promoting their autonomy and capacity for self-determination. We briefly discuss various restrictions commonly placed on them and the persistent biases that keep us from seeking to truly understand their experiences. Drawing on principlism, the ethic of care, the duty to care, and the wisdom of Jean Vanier, we discuss an ethical framework for assisting persons with intellectual and developmental disabilities and their caregivers in making ethically sound decisions.
Owing to the nature of their disability, paternalism is an inevitable reality in the daily lives of the intellectually disabled. Decision-making by others for their assumed best interests, but without their explicit consent, is usually beneficial and frequently justifiable. Unfortunately, the history of care for those with intellectual disabilities is replete with examples of misguided and often harmful paternalism excluding them from activities that are central to their ability to flourish. This paper analyzes under what conditions paternalism in the care of adults with cognitive disabilities is justified, and is limited to instances in which such paternalism seeks to advance their spirituality.
This paper seeks to provide various building blocks for the development of an ethical framework to guide practice and policy in the health care of people with intellectual and developmental disabilities (IDD). First, different models of care are critically reviewed. Next, the significance of meaningful and loving social relationships is emphasized. Health care providers are encouraged to "be with" people with IDD and their families rather than merely doing things "for or to" them. In supporting decision-making of people with IDD, health care providers should take into account the capacity of such persons to apprehend values, the importance of knowing the individual well, and the helpful role that the individual's family and other communities that give care can play.
Full inclusion and participation of people with intellectual and developmental disabilities in daily life in their own communities, is now recognized as their human right and is a stated goal in many countries. When people with intellectual and developmental disabilities experience mental distress, or their behaviors appear unusual, attending carefully to their communication in whatever way this occurs is crucial, as their perspectives on what may be causing this distress (or unusual behaviors), may be different from what might be concluded based on traditional psychiatric diagnostic frameworks, e.g., Diagnostic and Statistical Manual of Mental Disorders (DSM) and The International Classification of Mental and Behavioral Disorders (ICD). Learning the emotional and behavioral language of those who do not communicate in typical ways will ensure that all with intellectual and developmental disabilities contribute their voices to a better understanding of the mental distress they experience and should result in more effective interventions and optimal mental health and well-being.
Article 25 of the United Nations Convention of Rights of Persons with Disabilities indicates that persons with disabilities should have the right to the highest attainable standard of health without discrimination. There is much evidence that this right is not being enjoyed by persons with intellectual and developmental disabilities, not least through the often poor quality of the healthcare they receive. This paper discusses the major health-related issues faced by people with intellectual and developmental disability. It concludes by calling on the health sector and the community to work collaboratively to improve attitudes and awareness of this vulnerable group, and on governments to direct substantial resources to improve the physical and mental health and wellbeing of children, adolescents and adults with intellectual and developmental disabilities.
The consensus statement has been reprinted here verbatim, without modification to fit the journal's style. The consensus statement is published concurrently in the National Catholic Bioethics Quarterly.