‘It Never Ends’: Disability Advocacy and the Practice of Resilient Hope
Abstract
:1. Introduction
2. Describing Deficient Disability Services
3. Defining and Defending Transformational Advocacy
3.1. Definition of Advocacy
3.2. Anecdotes of Advocacy
3.3. Theology of Advocacy
4. Analyzing Despair and Hope
4.1. Hope and the Theological Virtues
4.2. Religious Hope
4.3. Ordinary Hope
5. Exploring Spiritual Practices That Cultivate Hope
5.1. Hope as a Cultivated Virtue
5.2. Individual Practices That Cultivate Internal Sources of Hope
5.3. Corporate Practices That Cultivate External Sources of Hope
5.4. The Efficacy of Hope-Building Practices
6. Conclusions
Funding
Data Availability Statement
Conflicts of Interest
1 | The interior core of our lives, the center out of which we act, is the spirit. In this sense, ‘spirit’ and its cognates are psychological not just religious terms. |
2 | |
3 | See research from Australasia (Royal Commission into Violence and Disability 2023); Canada (Spagnuolo and Earle 2017); Finland (Vehmas and Mietola 2021); United Kingdom (Equality and Human Rights Commission 2017). In some ways, the USA is behind other countries when it comes to disability justice. It has not signed the UN Convention on the Rights of Persons with Disabilities, and its independent orientation and free-market economic system work against developing social supports available in countries like Australia. The CRPD provides other nations a mechanism for advocacy and social change that is not available in the USA. I credit an anonymous referee for identifying this point. |
4 | Wolf Wolfensberger’s (1980) normalization movement denounced institutionalization and worked to integrate people with IDDs into the community. He denied that normalization means making people ‘normal’ by forcing them to conform to societal norms; instead, it is the environment that should be adjusted. Some disability scholars (e.g., Simpson 2018; Zaks 2023) critique the tacit belief behind normalization and its later formulation, social role valorization, that people with disabilities should learn ‘normal’ behaviors in order to acquire ‘normal’ lifestyles. Trying to make disabled people like ‘normal’ people is harmful—it assumes that ‘normal’ is right and deviation from ‘normal’ is pathological. Despite limitations, the normalization movement’s commitment to the humanity, equality, independence and integration of adults with IDDs is a morally compelling framework for thinking about social care. |
5 | I take the term “narrowed lives” and the four categories that define it from Vehmas and Mietola (2021, pp. 177–78). |
6 | |
7 | Clifton (2018, pp. 216–21) points out that forgiveness is a fraught topic for people with disabilities who have experienced injustice. The Church is often too quick to encourage forgiveness without appreciating that anger is a justified response. |
8 | Advocacy resiliency practices can be found in Davies (2018); Doppelt (2023, chp. 10); Macy and Johnstone (2022). |
References
- American Network of Community Options and Resources. 2022. The State of America’s Direct Support Workforce Crisis 2022. Available online: https://www.ancor.org (accessed on 12 May 2024).
- American Network of Community Options and Resources. 2024. The Case for Inclusion 2024. Available online: https://www.ancor.org (accessed on 12 May 2024).
- Aristotle. 1999. Nicomachean Ethics, 2nd ed. Indianapolis: Hackett. [Google Scholar]
- Bessey, Sarah, ed. 2020. A Rhythm of Prayer. New York: Convergent. [Google Scholar]
- Betcher, Sharon. 2007. Spirit and the Politics of Disablement. Minneapolis: Fortress. [Google Scholar]
- Brueggmann, Walter. 1996. The Threat of Life. Minneapolis: Fortress. [Google Scholar]
- Bultmann, Rudolf, and Karl Rengstorf. 1984. Elpis, Elpizo. In Theological Dictionary of the NewTestament. Edited by Gerhard Kittel and Gerhard Friedrich. Grand Rapids: Eerdmans, vol. 2, pp. 517–34. [Google Scholar]
- Centen, Carley. 2021. The Book of Hope. New York: Simon and Schuster. [Google Scholar]
- Clifton, Shane. 2018. Crippled Grace. Waco: Baylor University Press. [Google Scholar]
- Davies, Kate. 2018. Intrinsic Hope. Gabriola Island: New Society. [Google Scholar]
- Doppelt, Bob. 2023. Preventing and Healing Climate Traumas. New York: Routledge. [Google Scholar]
- Dorr, Donal. 1984. Spirituality and Justice. Maryknoll: Orbis. [Google Scholar]
- Eisland, Nancy. 1994. The Disabled God. Nashville: Abingdon. [Google Scholar]
- Elledge, Audrey, and Elizabeth Moore. 2022. Liturgies for Hope. New York: Penguin Random House. [Google Scholar]
- Enright, Robert, and Joanna North, eds. 1998. Exploring Forgiveness. Madison: University of Wisconsin Press. [Google Scholar]
- Equality and Human Rights Commission. 2017. Being Disabled in Britain: A Journey Less Equal. Available online: https://www.equalityhumanrights.com (accessed on 12 May 2024).
- Friedman, Carli. 2019. There’s No Place Like Home: A National Study of How People with Intellectual and/or Developmental Disabilities and Their Families Choose Where to Live. Washington, DC: The Arc of the United States. Available online: https://www.policycommons.net (accessed on 12 May 2024).
- Gallagher, Matthew, and Shane Lopez, eds. 2017. The Oxford Handbook of Hope. Oxford: Oxford University Press. [Google Scholar]
- Gould, James. 2019a. Disability Caregivers and Church doulia: What Dietrich Bonhoeffer Might Say. Part 1: Thoughts on Theory. Journal of Disability and Religion 23: 318–39. [Google Scholar] [CrossRef]
- Gould, James. 2019b. Disability Caregivers and Church doulia: What Dietrich Bonhoeffer Might Say. Part 2: Suggestions for Practice. Journal of Disability and Religion 23: 340–62. [Google Scholar] [CrossRef]
- Gould, James. 2020. Duty, Not Gratuity: The Ethics of Social Support for People with Intellectual Disabilities in the United States. Disability and Society 36: 1240–60. [Google Scholar] [CrossRef]
- Gould, James. 2021. Living in Nowheresville: David Hume’s Equal Power Requirement, Political Entitlements and People with Intellectual Disabilities. Philosophy of Disability 1: 145–73. [Google Scholar] [CrossRef]
- Gould, James. 2023. Beggars Can’t Be Choosers: The Rhetoric and Reality of Person-Centered Disability Services in the United States. Disability and Society 39: 2303–24. [Google Scholar] [CrossRef]
- Gould, James. 2024a. Left Behind: Catholic Social Teaching and Justice for People with Intellectual Disabilities. Journal of Catholic Social Thought 21: 153–87. [Google Scholar] [CrossRef]
- Gould, James. 2024b. A Philosophical Critique of United States Housing Policy for Adults with Intellectual Disabilities. Disability and Society, 1–20. [Google Scholar] [CrossRef]
- Gould, James. 2024c. Beyond the Shadows: A Public Theology of Disability Inclusion. International Journal of Public Theology 18: 387–409. [Google Scholar] [CrossRef]
- Hadot, Pierre. 1995. Philosophy as a Way of Life. Oxford: Blackwell. [Google Scholar]
- Hansen, Rick. 2018. Resilient. New York: Harmony. [Google Scholar]
- Illinois Department of Human Services. n.d. Ligas Consent Decree. Available online: https://www.dhs.state.il.us (accessed on 12 May 2024).
- Institute on Community Integration. 2023. Family and Individual Needs for Disability Supports: Community Report 2023. Available online: https://www.ici.umn.edu (accessed on 12 May 2024).
- Jackson, Brenda, and Cindy Bergeman. 2011. How Does Religiosity Enhance Well-Being? The Role of Perceived Control. Psychology of Religion and Spirituality 3: 149–61. [Google Scholar] [CrossRef] [PubMed]
- King, Martin Luther, Jr. 2010. Strength to Love. Minneapolis: Fortress. [Google Scholar]
- Lane, Dermot. 1996. Keeping Hope Alive. Mahwah: Paulist. [Google Scholar]
- Macy, Joanna. 1983. Despair and Personal Power in the Nuclear Age. Philadelphia: New Society. [Google Scholar]
- Macy, Joanna, and Chris Johnstone. 2022. Active Hope, 2nd ed. Novato: New World Library. [Google Scholar]
- Marcel, Gabriel. 1967. Desire and Hope. In Readings in Existential Phenomenology. Edited by Nathaniel Lawrence and Daniel O’Connor. Englewood Cliffs: Prentice-Hall, pp. 271–85. [Google Scholar]
- Martin, Adrienne. 2014. How We Hope. Princeton: Princeton University Press. [Google Scholar]
- McManus, Ed. 2023. Developmental Disability Consulting: Ed’s Newsletter 274. Available online: https://www.facebook.com/EdMcManusDDC (accessed on 12 May 2024).
- McMinn, Mark. 2017. The Science of Virtue. Grand Rapids: Brazos. [Google Scholar]
- Moltmann, Jurgen. 1967. Theology of Hope. New York: Harper & Row. [Google Scholar]
- Moody-Adams, Michelle. 2022. Making Space for Justice. New York: Columbia University Press. [Google Scholar]
- National Core Indicators. 2020. Staff Stability Report 2020. Available online: https://www.nationalcoreindicators.org (accessed on 12 May 2024).
- Newberg, Andrew. 2014. The Neuroscientific Study of Spiritual Practices. Frontiers in Psychology 5: 215. [Google Scholar] [CrossRef] [PubMed]
- Obama, Barack. 2008. Obama’s Iowa Caucus Speech. Available online: https://www.nytimes.com (accessed on 12 May 2024).
- Offutt, Stephen, F. David Bronkema, Krisanne Murphy, Robb Davis, and Gregg Okesson. 2016. Advocating for Justice. Grand Rapids: Baker Academic. [Google Scholar]
- Pedrotti, Jennifer. 2017. Hope and Social Justice: “Keep on Keeping On”. In The Oxford Handbook of Hope. Edited by Matthew Gallagher and Shane Lopez. Oxford: Oxford University Press, pp. 357–58. [Google Scholar]
- Peterson, Christopher, and Martin Seligman. 2004. Character Strengths and Virtues. Oxford: Oxford University Press. [Google Scholar]
- Pleeging, Emma, Job van Exel, and Martijn Burger. 2022. Characterizing Hope: An Interdisciplinary Overview of the Characteristics of Hope. Applied Research in Quality of Life 17: 1681–723. [Google Scholar] [CrossRef]
- Residential Information Systems Project. 2021. Long-Term Supports and Services Recipients by Setting Type and Year. University of Minnesota. Available online: https://risp.umn.edu/ (accessed on 12 May 2024).
- Reynolds, Thomas. 2008. Vulnerable Communion. Grand Rapids: Brazos. [Google Scholar]
- Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. 2023. A Brief Guide to the Final Report. Available online: https://www.disability.royalcommission.gov.au (accessed on 12 May 2024).
- Sandage, Steven, Sarah Crabtree, and Maria Schweer. 2014. Differentiation of Self and Social Justice Commitment Mediated by Hope. Journal of Counseling and Development 92: 67–74. [Google Scholar] [CrossRef]
- Schaeffer, Hans, and Koos Tamminga. 2022. Does Inclusion Save Us All? International Journal for the Study of the Christian Church 22: 5–20. [Google Scholar] [CrossRef]
- Simpson, Murray. 2018. Power, Ideology and Structure: The Legacy of Normalization for Intellectual Disability. Social Inclusion 6: 12–21. [Google Scholar] [CrossRef]
- Smith, Nicholas. 2008. Analyzing Hope. Critical Horizons: A Journal of Philosophy and Social Theory 9: 5–23. [Google Scholar] [CrossRef]
- Snyder, Charles. 1994. The Psychology of Hope. New York: Free Press. [Google Scholar]
- Solnit, Rebecca. 2016. Hope in the Dark. Chicago: Haymarket. [Google Scholar]
- Spagnuolo, Natalie, and Kory Earle. 2017. Freeing Our People: Updates from the Long Road to Deinstitutionalization. Canadian Center for Policy Alternatives. Available online: https://www.policyalternatives.ca (accessed on 12 May 2024).
- They Deserve More. 2024. 2024 Fact Sheet. Available online: https://www.theydeservemore.com (accessed on 12 May 2024).
- Van Cappellen, Patty, Maria Toth-Gauthier, Vissilis Saroglou, and Barbara Frederickson. 2016. Religion and Well-Being: The Mediating Role of Positive Emotions. Journal of Happiness Studies 17: 485–505. [Google Scholar] [CrossRef]
- Vehmas, Simo, and Reeta Mietola. 2021. Narrowed Lives. Stockholm: Stockholm University Press. [Google Scholar]
- Vilaythong, Alexander, Randolph Arneau, David Rosen, and Nathan Mascaro. 2003. Humor and Hope: Can Humor Increase Hope? Humor 61: 79–89. [Google Scholar] [CrossRef]
- Weingarten, Kaethe. 2010. Reasonable Hope: Construct, Clinical Applications and Supports. Family Process 49: 5–25. [Google Scholar] [CrossRef] [PubMed]
- White House. 2021. Fact Sheet: Biden-Harris Administration Efforts to Support Full Participation and Equality for People with Disabilities. Available online: https://www.whitehouse.gov (accessed on 12 May 2024).
- Willard, Dallas. 1988. The Spirit of the Disciplines. San Francisco: Harper San Francisco. [Google Scholar]
- Wolfensberger, Wolf. 1980. The Definition of Normalization: Update, Problems, Disagreements and Misunderstandings. In Normalization, Social Integration and Human Services. Edited by Robert Flynn and Kathleen Nitsch. Baltimore: University Park Press, pp. 71–115. [Google Scholar]
- Wolterstorff, Nicholas. 2013. Journey Toward Justice. Grand Rapids: Baker Academic. [Google Scholar]
- Yang, Seung. 2009. Hope. In New Interpreters Dictionary of the Bible. Edited by Katharine Sakenfeld. Nashville: Abingdon, vol. 2, pp. 885–89. [Google Scholar]
- Yong, Amos. 2007. Theology and Down Syndrome. Waco: Baylor University Press. [Google Scholar]
- Zaks, Zosia. 2023. Changing the Medical Model of Disability to the Normalization Model of Disability: Clarifying the Past to Create a New Future Direction. Disability and Society. [Google Scholar] [CrossRef]
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Gould, J.B. ‘It Never Ends’: Disability Advocacy and the Practice of Resilient Hope. Religions 2024, 15, 1166. https://doi.org/10.3390/rel15101166
Gould JB. ‘It Never Ends’: Disability Advocacy and the Practice of Resilient Hope. Religions. 2024; 15(10):1166. https://doi.org/10.3390/rel15101166
Chicago/Turabian StyleGould, James B. 2024. "‘It Never Ends’: Disability Advocacy and the Practice of Resilient Hope" Religions 15, no. 10: 1166. https://doi.org/10.3390/rel15101166
APA StyleGould, J. B. (2024). ‘It Never Ends’: Disability Advocacy and the Practice of Resilient Hope. Religions, 15(10), 1166. https://doi.org/10.3390/rel15101166