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Disability Ethics

Overview

SUGGESTED RESOURCES

  • Michael Sleasman, “Bioethics Past, Present, and Future: Important Signposts in Human Dignity” (An overview of bioethics and the breadth of issues it encompasses).
  • John Kilner, “The Ends Don’t Justify the Genes.”
  • John Kilner, “Poor Prognosis for Preimplantation Genetic Diagnosis (PGD)?”
  • Andrew Fergusson, “The One Who Smiles a Lot.”
  • Video resource from our Academy of Fellow Consultation on “Hope, Suffering, and Disability.”

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Bibliography
Intersections Posts
Dignitas Articles
Bioengagements

Bibliography

-
A Comprehensive Guide to Intellectual & Developmental Disabilities
Baltimore
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Paul H. Brookes Publishing, Company
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2017
-
A Constructive Theology of Intellectual Disability: Human Being as Mutuality and Response
New York
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Fordham University Press
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2012
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A Theological Diagnosis: A New Direction Genetic Therapy, ‘Disability’ and the Ethics of Healing
Philadelphia
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Jessica Kingsley Publishers
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2011
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Americans with Disabilities
New York
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Routledge
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2000
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Arguing about Disability: Philosophical Perspectives
New York
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Routledge
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2008
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Beyond Suffering: A Christian View on Disability Ministry
Agoura Hills, CA
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Joni & Friends
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2012
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Bioethics and Disability: Toward a Disability-Conscious Bioethics
Cambridge, MA
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Cambridge University Press
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2011
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Choosing Children: Genes, Disability, and Design
New York
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Oxford University Press
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2008
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Choosing Down Syndrome: Ethics and New Prenatal Testing Technologies
Cambridge, MA
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MIT Press
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2018
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Cognitive Disability and its Challenge to Moral Philosophy
Malden, Mass.
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Wiley
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2010
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Controversial Issues in a Disabling Society
Philadelphia
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Open University Press
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2003
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Controversial Therapies for Autism and Intellectual Disabilities: Fad, Fashion, and Science in Professional Practice
New York
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Routledge
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2015
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Critical Disability Theory: Essays in Philosophy, Politics, Policy, and Law
Vancouver, British Columbia
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UBC Press
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2006
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Disability Bioethics: Moral Bodies, Moral Differences
Baltimore
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Rowman & Littlefield
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2008
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Disability Civil Rights Law and Policy: Cases and Materials
Eagan, Minn.
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West Academic Publishing
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2014
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Disability Incarcerated: Imprisonment and Disability in the United States and Canada
New York
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Palgrave Macmillan
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2014
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Disability Politics and Care: The Challenge of Direct Funding
Vancouver, British Columbia
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UBC Press
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2016
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Disability Research Today: International Perspectives
New York
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Routledge
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2015
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Disability Studies and the Hebrew Bible: Figuring Mephibosheth in the David Story
New York
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T&T Clark
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2006
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Disability Studies: An Interdisciplinary Introduction
Thousand Oaks, Calif.
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SAGE Publications
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2016
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Disability and Christian Theology: Embodied Limits and Constructive Possibilities
New York
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Oxford University Press
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2009
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Disability and Human Rights: Global Perspectives
New York
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bloomsbury academic press
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2015
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Disability and the Good Human Life
New York
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Cambridge University Press
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2014
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Disability and the Gospel: How God Uses Our Brokenness to Display His Grace
Wheaton, Ill.
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Crossway
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2012
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Disability in Australia: Exposing a Social Apartheid
Sydney
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University of New South Wales Press
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2004
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Disability in the Christian Tradition: A Reader
Grand Rapids, MI
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Eerdmans Publishing Company
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2012
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Disability in the Hebrew Bible: Interpreting Mental and Physical Differences
New York
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Cambridge University Press
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2008
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Disability, Difference, Discrimination: Perspectives on Justice in Bioethics and Public Policy
Lanham, MD
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Rowman & Littlefield Publishers
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1998
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Disability, Human Rights and Education: Cross-Cultural Perspectives
Maidenhead Berkshire
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Open University Press
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1999
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Disability, Policy and Professional Practice
Thousand Oaks, Calif.
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SAGE Publications
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2010
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Disability, Providence, and Ethics: Bridging Gaps, Transforming Lives
Waco, TX
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Baylor University Press
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2014
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Disability: The Social, Political, and Ethical Debate
Amherst, NY
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Prometheus Books
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2009
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Discovering Trinity in Disability: A Theology for Embracing Difference
Maryknoll, NY
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Orbis
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2013
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Ethics, Disability, and Sports
New York
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Routledge
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2013
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Ethics, Law and Policy
Thousand Oaks, CA
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SAGE Publications
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2012
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Feminist Disability Studies
Bloomington, IN
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Indiana University Press
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2011
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From Chance to Choice: Genetics and Justice
New York
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Cambridge University Press
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2000
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From Rhetoric to Action: Implementing the UN Convention on the Rights of Persons with Disabilities
New York
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Cambridge University Press
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2011
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Genetic Discrimination: Transatlantic Perspectives on the Case for a European Level Legal Response
New York
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Routledge
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2015
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Genetics, Disability, and Deafness
Washington, D.C.
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Gallaudet University Press
,
2004
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How to Be a Christian in a Brave New World
Grand Rapids
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Zondervan
,
2006
-
Impairment and Disability: Law and Ethics at the Beginning and End of Life
New York
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Routledge
,
2007
-
Intellectual Disability: Ethics, Dehumanization and a New Moral Community
Hoboken, NJ
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Wiley
,
2013
-
Living l’Arche: Stories of Compassion, Love, and Disability
Collegeville, Minn
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Liturgical Press
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2009
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Making Medical Decisions for the Profoundly Mentally Disabled
Cambridge, MA
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MIT Press
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2005
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Nothing about Us without Us: Disability Oppression and Empowerment
Berkeley
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University of California Press
,
2000
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People With Disabilities: Sidelined or Mainstreamed?
New York
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Cambridge University Press
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2013
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Philosophical Reflections on Disability
New York
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Springer
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2010
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Philosophical and Ethical Problems in Mental Handicap
New York
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Palgrave
,
2000
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Prenatal Testing and Disability Rights
Washington, DC
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Georgetown University Press
,
2000
-
Public Health Perspectives on Disability: Epidemiology to Ethics and Beyond
New York
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Springer
,
2011
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Quality of Life and Human Difference: Genetic Testing, Health Care, and Disability
New York
,
Cambridge University Press
,
2005
-
Receiving the Gift of Friendship: Profound Disability, Theological Anthropology, and Ethics
Grand Rapids
,
Eerdmans Publishing Company
,
2008
-
Reconsidering Intellectual Disability: L’Arche, Medical Ethics, and Christian Friendship
Washington, D.C.
,
Georgetown University Press
,
2015
-
Regulating Preimplantation Genetic Diagnosis in the United States: The Limits of Unlimited Selection
New York
,
Palgrave Macmillan US
,
2015
-
Religion and Disability: Essays in Scripture, Theology, and Ethics
Kansas City, MO
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Sheed & Ward
,
1995
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Science and Other Cultures: Issues in Philosophies of Science and Technology
New York
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Routledge
,
2003
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The Bible, Disability, and the Church: A New Vision of the People of God
Grand Rapids
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Eerdmans Publishing Company
,
2011
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The Disability Rights Movement: From Charity to Confrontation
Philadelphia, PA
,
Temple University Press
,
2011
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The Disability Studies Reader
New York
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Routledge
,
2016
-
The Ethics of Autism: Among Them, But Not of Them
Bloomington, IN
,
Indiana University Press
,
2008
-
The Future of the Disabled in Liberal Society: An Ethical Analysis
Notre Dame, IN
,
University of Notre Dame Press
,
2000
-
The Genetics of Neurodevelopmental Disorders
Hoboken, N.J.
,
Wiley
,
2015
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The Paradox of Disability: Responses to Jean Vanier and L’Arche Communities from Theology and the Sciences
Grand Rapids
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Eerdmans
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2010
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The Rejected Body: Feminist Philosophical Reflections on Disability
New York
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Routledge
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1996
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Theology and Down Syndrome: Reimagining Disability in Late Modernity
Waco, TX
,
Baylor University Press
,
2007
-
Theology, Disability and the New Genetics: Why Science Needs the Church
New York
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T&T Clark
,
2007
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Vulnerable Communion: A Theology of Disability and Hospitality
Ada, MI
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Baker Publishing Group
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2008
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Why I Burned My Book and Other Essays on Disability
Philadelphia, PA
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Temple University Press
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2003

Position Statement

Disability and Discipleship: The “Able-Bodied” Body of Christ

Friday, October 28, 2022

“Disability” is a word tossed about easily in our world. Yet the sheer spectrum of disabilities makes the term ambiguous and even artificial. It is helpful to conceive of disability as a term that points to a limitation due to an involuntary bodily impairment, social role expectation, or external physical/social obstruction impacting participation in communal life. Beyond this definition, the church is faced with a deeper challenge to define disability while wrestling with various theological implications of over-simplifying the term.

Why Was “The Twitching Generation” So Popular on Bioethics.com?

Friday, August 19, 2022

At bioethics.com, I curate and post articles from the media that deal with bioethics issues. A typical post at bioethics.com is a title, link, and short blurb from an article in the mainstream media, such as The Wall Street Journal, The New York Times, Reuters, or the Associated Press. Over the past year, one bioethics.com post received more views in a single day than any other post, and it won by a large margin: “The Twitching Generation” by Helen Lewis at The Atlantic (See post here).[1] I posted “The Twitching Generation” on Monday February 28, 2022. On Saturday alone it received 2,512 views, and as of April 2022, it had 5,338 views. Those numbers are just for the bioethics.com post which serves as a thoroughfare to the actual article. The topic is apparently of interest to our bioethics readers, so let’s look at what we can learn from Helen Lewis’s article about teens and technology.

Assisted Suicide—A Quadriplegic’s Perspective

Thursday, October 13, 2016

Culture is so easily influenced by the entertainment industry. This is why I am sounding an alarm about a very dangerous message in a film released earlier this summer. It’s simply titled Me Before You.

A Biblical View on the Sanctity of Life, Part 1

Wednesday, February 15, 2017

At our core, we are predisposed to our own self-centered values, and we have no right to place those standards like a template over a person like Dan. We cannot judge another’s “quality of life” based on our one-sided prejudices. We need the biblical worldview to supplant our preconceived notions about life and its value. We need to give up our subjective criteria and accept an objective, transcendent worldview that ascribes true life-worth to someone like Dan.

A Biblical View on the Sanctity of Life, Part 2

Friday, February 24, 2017

In the 23 years since the passage of the Americans with Disabilities Act (ADA), I have watched its most celebrated ideals erode and crumble under a double standard. I had the honor of serving on the National Council on Disability when the ADA became law, and ideally, it was intended to guarantee the basic rights of Americans with disabilities. Many saw the ADA as a law which would help move society beyond the premise that one is “better off dead than disabled.” I am amazed, however, at how much people’s fears of disability have eroded the most basic of human rights, especially now that so many more people are surviving disabling conditions. And when society’s fundamental fear of disability provides the framework to legislate policy, the outcome can only result in a double standard.

Praying through Chronic Illness

Tuesday, August 29, 2017

As Christians who believe in the God “who forgives all your iniquity, who heals all your diseases,” it can be hard to know how to pray for those suffering from chronic illness (Psalm 103:3, ESV). Often, the church starts strong, praying fervently for the healing of the afflicted person’s body. However, as weeks, months, and even years go by, discouragement can set in. Why keep praying for something that does not seem to happen? As other requests for prayer are shared, it is easy to push those with chronic illnesses into the background.

A Discerning Look at Prenatal Testing

Friday, August 20, 2021

Now, an increasing amount of information can be derived through various tests, screenings, and monitoring of the child through its earliest days. For example, genetic tests have become a standard aspect of pregnancy care in medically advanced countries such as the United States.[1] Non-Invasive Prenatal Testing (NIPT) is one such test, and it continues to grow in popularity.[2] Much as going to college is often the assumed next step following high school graduation, prenatal testing is generally accepted as “what you do” when a woman is expecting. It might be prudent, therefore, for Christians to honestly grapple with some of the ethical considerations these tests raise.

Disposition of the Heart

Friday, October 22, 2021

Every day at noon, she poured her heart out with vocal fervency before God. This experience of God as lovingly gentle and as one who invites us into his presence with the full spectrum of our human emotions comforted me throughout my life. I grew up loving God and his Word, attended church regularly with my family, and received salvation when I turned seven. However, that same inviting love and acceptance has not always been reflected in the church, with some holding unintentionally negative or stereotyped attitudes of me as a person with a disability.

Holey, Wholly, Holy Discipleship

Thursday, November 18, 2021

If the risen and glorified Jesus is holey, wholly, holy, and our aim in discipleship is to look more like Him, then how do we disciple in brokenness (holey)? How do we embrace the whole, not simply neurological, person (wholly)? How do we form followers of Christ who look like Him (holy)?

Disabled Isn’t Unabled: What Living as a Disabled Pastor Has Taught Me about the Church

Thursday, December 16, 2021

What is the purpose of a pastor? Is it to stand in front of a congregation, eloquently preaching from translated and exegeted original language notes? Should his or her leadership model the values of the world, where his congregants follow his lead because he sways them by the intellectual prowess and physical abilities that society so values?

In My Time of Dying: Ethical Considerations in End of Life Care for Individuals with a Substance Use Disorder

Dignitas Vol. 29, No. 1-2 (Spring-Summer 2022)

The Ends Don't Justify the Genes

Dignity Vol. 8, No. 3 (Fall 2002)

Prenatal Diagnostic Screening: An Update & CBHD Engagement

Dignitas Vol. 19, No. 2 (Summer 2012)

Big Data in Medicine

Dignitas Vol. 22, No. 4 (Winter 2015)
Movie

Away from Her

Movie

Charly

Book

Gathering Blue

Movie

Guarding Eddy

Movie

Mask

Movie

Music Within

Movie

Praying with Lior

Movie

The Elephant Man

Movie

The Intouchables