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Chapter 7 - Intellectual Disability

Published online by Cambridge University Press:  07 October 2022

By
Oyepeju Raji  and
Cristina Gangemi
Edited by
Christopher C. H. Cook  and
Andrew Powell
Christopher C. H. Cook
Affiliation:
Institute for Medical Humanities, Durham University
Andrew Powell
Affiliation:
Formerly Warneford Hospital and University of Oxford
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Summary

Spirituality is a deeply personal universal human experience, and people with intellectual disability may miss out on the expression of this vital part of their identity, which is a fundamental human right. An understanding of people with intellectual disability as creative communicators has been gained through action research, but spirituality is still a poorly understood aspect of their lives, giving rise to unmet needs. Outdated practices and beliefs about the origins of disability have led to a culture of exclusion or, at best, tokenism. Around the world, reports are still emerging of marginalization, discrimination and even abuse because of negative spiritual attribution or views about cognitive abilities and consequent economic worth. Faith communities and secular care providers need to incorporate new learning about the importance of spirituality for mental health into mainstream planning of care with the involvement of people with intellectual disabilities who communicate creatively as co-producers.

Keywords

cognitivecommunicationcreativedifficultiesdisabilityfaithintellectuallearningpresencespiritual
Type
Chapter
Information
Spirituality and Psychiatry , pp. 139 - 157
Publisher: Cambridge University Press
Print publication year: 2022

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References

African Child Policy Forum (2014) The African Report on Children with Disabilities: Promising Starts and Persisting Challenges. Addis Ababa: African Child Policy Forum.Google Scholar
Association of Directors of Adult Social Services (ADASS), Care Quality Commission (CQC), Department of Health, Health Education England (HEE), Local Government Association (LGA) and NHS England (2015) Transforming Care for People with Learning Disabilities – Next Steps. London: NHS England.Google Scholar
Baldacchino, D. and Draper, P. (2001) Spiritual coping strategies: a review of the nursing research literature. Journal of Advanced Nursing, 34, 833–841.Google Scholar
Banks, R. (2003) Psychological treatments for people with learning disabilities. Psychiatry, 2, 62–65.Google Scholar
Benomir, A. M., Nicolson, R. I. and Beail, N. (2016) Attitudes towards people with intellectual disability in the UK and Libya: a cross-cultural comparison. Research in Developmental Disabilities, 51, 1–9.Google Scholar
Benson, L. A. and Stark, M. (1996) Timeless Healing: The Power and Biology of Belief. New York: Simon & Schuster.Google Scholar
Bicknell, D. J. (1983) The psychopathology of handicap. British Journal of Medical Psychology, 56, 167–178.Google Scholar
Bowlby, J. (1961) Processes of mourning. International Journal of Psychoanalysis, 42, 317–340.Google Scholar
Bunning, K. and Steel, G. (2006) Self-concept in young adults with a learning disability from the Jewish community. British Journal of Learning Disabilities, 35, 43–49.Google Scholar
Carter, E. W. (2016) A place of belonging: research at the intersection of faith and disability. Review & Expositor, 113, 167–180.Google Scholar
Carter, E. W. and Boehm, T. L. (2019) Religious and spiritual expressions of young people with intellectual and developmental disabilities. Research and Practice for Persons with Severe Disabilities, 44, 37–52.Google Scholar
Chinvarakorn, V. (2006) Empowered by FAITH. Available at www.buddhistchannel.tv/index.php?id=6,2892,0,0,1,0 (accessed January 2021).Google Scholar
Cook, C. C. H. (2004) Addiction and spirituality. Addiction, 99, 539–551.Google Scholar
Cook, C. C. H. and Grimwade, L. (2021) Spirituality and Mental Health. London: Royal College of Psychiatrists.Google Scholar
Cooper, S.-A., Smiley, E., Morrison, J. et al. (2007) Mental ill-health in adults with intellectual disabilities: prevalence and associated factors. British Journal of Psychiatry, 190, 27–35.Google Scholar
Cooper, S.-A., Smiley, E., Allan, L. and Morrison, J. (2018) Incidence of unipolar and bipolar depression, and mania in adults with intellectual disabilities: prospective cohort study. British Journal of Psychiatry, 212, 295–300.CrossRefGoogle ScholarPubMed
Costello, H. and Bouras, N. (2006) Assessment of mental health problems in people with intellectual disabilities. Israel Journal of Psychiatry and Related Sciences, 43, 241–251.Google Scholar
Coulter, D. (2002) Recognition of spirituality in healthcare: personal and universal implications. In Gaventa, W. Jnr., Gaventa, W. and Coulter, D., eds., Spirituality and Intellectual Disability: International Perspectives on the Effect of Culture and Religion on Healing Mind, Body and Soul. Philadelphia, PA: Haworth Press, pp. 1–11.Google Scholar
Dein, S. (2020) Religious healing and mental health. Mental Health, Religion and Culture, 23, 657–665,Google Scholar
Department of Health (2001) Valuing People: A New Strategy for Learning Disabilities for the Twenty-first Century. London: The Stationery Office.Google Scholar
Disability Africa (2016) ‘I thought my child was a devil’. Available at www.disability-africa.org/blog/2016/11/21/i-thought-my-child-was-a-devil (accessed December 2020).Google Scholar
Dodd, P., Dowling, S. and Hollins, S. (2005) A review of the emotional, psychiatric and behavioural responses to bereavement in people with intellectual disabilities. Journal of Intellectual Disability Research, 49, 537–543.CrossRefGoogle ScholarPubMed
Donatello, V. (2020) Nessuno escluso: i riferimenti alle persone con disabilità nel magistero e nella catecheis ecclesiale [No one excluded: in reference to people with disabilities in ecclesial, magisterium and catechetical teachings]. Rome: Libreria Ateneo Salesiano.Google Scholar
Dykens, E. M. (2006) Toward a positive psychology of mental retardation. American Journal of Orthopsychiatry, 76, 185–193.Google Scholar
Gangemi, C. (2018) Because I Am: Christian Accompaniment Through the Experience of a Pre-Birth Diagnosis of a Possible Disability: Parents’ Resource. Alton: Redemptorist Publications.Google Scholar
Gangemi, C. (2020) Ways of knowing God, becoming friends in time: a timeless conversation between disability, theology, Edith Stein and Professor John Swinton. Journal of Disability & Religion, 24, 332–347.Google Scholar
Gangemi, C., Tobanelli, M., Vincenzi, G., Swinton, J. (2013) EveryBody has a Story. Enabling Communities to Meet People with Learning Disabilities and Respond Effectively to Their Expressed Spiritual and Religious Needs: A Participatory Action Research Approach. Aberdeen: University of Aberdeen. Research report available on request from cgangemi.kairos@gmail.comGoogle Scholar
Gangemi, C. and Waldron, L. (2018) Intellectual Disability: Caring for Yourself and Others. Alton: Redemptorist Publications.Google Scholar
Gardner, H. (1999) Intelligence Reframed. New York: Basic Books.Google Scholar
Gaventa, W. (2018) Disability and Spirituality: Recovering Wholeness. Waco, TX: Baylor University Press.Google Scholar
Gilbert, P. and Watts, N. (2006) Don’t mention God! A Life in the Day, 10, 20–25.CrossRefGoogle Scholar
Hatton, C., Turner, S., Shah, R. et al. (2004) Religious Expression: a Fundamental Human Right. The Report of an Action Research Project on Meeting the Religious Needs of People with Learning Disabilities. London: Foundation for People with Learning Disabilities.Google Scholar
Hart, S. and Pettingell, J. (2005) Valuing people with learning disabilities. Journal for the Royal Society for the Promotion of Health, 125, 16–17.Google Scholar
Hogg, J. (2001) Essential healthcare for people with learning disabilities: barriers and opportunities. Journal of the Royal Society of Medicine, 94, 333–336.Google Scholar
Hollins, S. (1998) Remorse for being: through the lens of learning disability. In Cox, M., ed., Remorse and Reparation. London: Jessica Kingsley Publishers, pp. 95–104.Google Scholar
Hollins, S. and Esterhuyzen, A. (1997) Bereavement and grief in adults with learning disabilities. British Journal of Psychiatry, 170, 497–501.Google Scholar
Hollins, S. and Sinason, V. (2000) Psychotherapy, learning disabilities and trauma: new perspectives. British Journal of Psychiatry, 176, 32–36.Google Scholar
Kaufman, A. V., Campbell, V. A. and Adams, J. P. (1990) A lifetime of caring: older parents who care for adult children with mental retardation. International Journal of Family Care, 2, 39–54.Google Scholar
Larson, D., Wood, G. and Larson, S. (1993) A paradigm shift in medicine toward spirituality? Advances, 9, 39–49.Google Scholar
Larson, D., Sawyers, J. and McCullough, M. (1997) Scientific Research on Spirituality and Health: A Consensus Report. London: National Institute for Health and Care Research.Google Scholar
Livability (2016) Share your Story: Listening to the People That Use Our Services. Available at www.livability.org.uk/blog/disability-care/share-story-listening-service-users/ (accessed 27 January 2021).Google Scholar
McGee, J. (1993) Gentle teaching for persons with mental retardation: the expression of a psychology of interdependence. In Fletcher, R. J. and Dosen, A., eds., Mental Health Aspects of Mental Retardation: Progress in Assessment and Treatment. Washington, DC: Lexington Books, pp. 350–376.Google Scholar
McNair, J. and Leguit, G. (2000) The local church as an agent of natural support to individuals with developmental disabilities. Issues in Transition, 2, 11–16.Google Scholar
McRitchie, R., McKenzie, K., Quayle, E., Harlin, M. and Neumann, K (2014) How adults with intellectual disability experience bereavement and grief: a qualitative exploration. Death Studies, 38, 179–185.Google Scholar
McSherry, W. (2000) Making Sense of Spirituality in Nursing Practice. Edinburgh: Churchill Livingstone.Google Scholar
Marris, P. (1991) The social construction of uncertainty. In Parkes, C. M., Stevenson-Hinde, J. and Marris, P., eds., Attachment Across the Life Cycle. London: Routledge, pp. 77–90.Google Scholar
Matthews, P. (2013) Pope John Paul II and the Apparently ‘Non-Acting’ Person. Leominster: Gracewing Publishing.Google Scholar
Miltiades, H. B. and Pruchno, R. (2002) The effect of religious coping on caregiving: appraisals of mothers of adults with developmental disabilities. Gerontology, 42, 82–91.Google Scholar
Montgomery, C. (1991) The caregiving relationships: paradoxical and transcendent aspects. Journal of Transpersonal Psychology, 23, 91–105.Google Scholar
Morin, D., Valois, P., Crocker, G., Robitaille, C. and Lopes, T. (2018) Attitudes of health care professionals toward people with intellectual disability: a comparison with the general population. Journal of Intellectual Disability Research, 62, 746–758.CrossRefGoogle ScholarPubMed
Mpofu, E. and Harley, D. (2002) Disability and rehabilitation in Zimbabwe: lessons and implications for rehabilitation practice in the US. Journal of Rehabilitation, 68, 26–40.Google Scholar
Narayanasamy, A., Gates, B. and Swinton, J. (2002) Spirituality and learning disabilities: a qualitative study. British Journal of Nursing, 11, 948–957.Google Scholar
Oswin, M. (1991) Am I Allowed to Cry? A Study of Bereavement Amongst People Who Have Learning Difficulties. London: Souvenir Press.Google Scholar
Parkes, C. M. (1972) Bereavement: Studies of Grief in Adult Life. London: Tavistock Publications.Google Scholar
Patka, M., Keys, C. B., Henry, D. B. and McDonald, K. E., (2013) Attitudes of Pakistani community members and staff toward people with intellectual disability. American Journal of Intellectual and Developmental Disabilities, 118, 32–43.Google Scholar
Francis, Pope (2020) Message of the Holy Father Francis for the International Day of Persons with Disabilities. Available at www.vatican.va/content/francesco/en/messages/pont-messages/2020/documents/papa-francesco_20201203_messaggio-disabilita.html (accessed 4 December 2020).Google Scholar
Race, D. G. (2002) The historical context. In Race, D. G., ed., Learning Disability: A Social Approach. London: Routledge, pp. 23–52.Google Scholar
Raji, O. and Hollins, S. (2000) Exclusion from funerary rituals and mourning: implications for social and individual identity. In Hubert, J., ed., Madness, Disability and Social Exclusion: The Archaeology and Anthropology of ‘Difference’. London: Routledge, pp. 208–216.Google Scholar
Raji, O., Hollins, S. and Drinnan, A. (2003) How far are people with learning disabilities involved in funeral rites? British Journal of Learning Disabilities, 31, 42–45.Google Scholar
Royce-Davis, J. (2000) The influence of spirituality on community participation and belonging: Christina’s story. Counselling and Values, 44, 135–142.Google Scholar
Seidel, M. (2003) The Declaration of Rome 2003 with regard to the promotion of interest and services for people with intellectual disabilities with mental health needs. Journal of Policy and Practice in Intellectual Disability, 1, 101–103.Google Scholar
Singer, G. H. and Irvin, L. K. (1989) Family care giving, stress and support. In Support for Caregiving Families: Enabling Positive Adaptation to Disability. Baltimore, MD: Paul H. Brookes Publishing, pp. 3–25.Google Scholar
Sinson, J. (1996) Normalisation and community integration of adults with severe mental handicaps relocated to group homes. Journal of Developmental and Physical Disabilities, 6, 255–270.Google Scholar
Stainton, T. and Besser, H. (1998) The positive impact of children with an intellectual disability on the family. Journal of Intellectual and Developmental Disability, 23, 57–70.Google Scholar
Stein, E, (1989) On the Problem of Empathy (Stein, W., trans.). Washington, DC: ICS Publications, p. 17.Google Scholar
Stein, E. (1993) Knowledge and Faith (Herder, V., trans.) Freiburg im Breisgau 1993, Archivum Carmelitanum Band XV of Edith Stein Werke 1993 English translation. Washington, DC: Washington Province of Discalced Carmelites.Google Scholar
Stockholder, J. E. (1994) Naming and renaming persons with intellectual disabilities. In Rioux, M. H. and Bach, M., eds., Disability is Not Measles: New Research Paradigms in Disability. Toronto: Roeher Institute, pp. 153–179.Google Scholar
Sulmasy, D. P. (1997) The Healer’s Calling: A Spirituality for Physicians and Other Health Care Professionals. New York: Paulist Press.Google Scholar
Swinton, J. (1997) Restoring the image: spirituality, faith and cognitive disability. Journal of Religion and Health, 36, 21–28.Google Scholar
Swinton, J. (1999) Reclaiming the soul: a spiritual perspective on forensic nursing. In Kettles, A. and Robinson, D., eds., Forensic Nursing and the Multidisciplinary Care of the Mentally Disordered Offender. London: Jessica Kingsley Publishers, pp. 113–127.Google Scholar
Swinton, J. (2001a) A Space to Listen: Meeting the Spiritual Needs of People with Learning Disabilities. London: Mental Health Foundation.Google Scholar
Swinton, J. (2001b) Spirituality and Mental Health Care: Rediscovering a ‘Forgotten’ Dimension. London: Jessica Kingsley Publishers.Google Scholar
Swinton, J. (2004a) Why Are We Here? Spirituality and the Lives of People with Learning Disabilities. London: Mental Health Foundation.Google Scholar
Swinton, J. (2004b) No Box to Tick: A Booklet for Carers and Support Workers on Meeting the Spiritual Needs of People with Learning Disabilities. London: Mental Health Foundation.Google Scholar
Swinton, J. (2012) From inclusion to belonging: a practical theology of community, disability and humanness. Journal of Religion, Disability & Health, 16, 172–190.Google Scholar
Taylor, R. J. and Chatters, L. N. (1986) Church-based informal support among elderly blacks. The Gerontologist, 26, 637–642.Google Scholar
Tobanelli, M., (2013) EveryBody Has a Story. Unpublished paper available on request from Google Scholar
Tomasulo, D. J. (2014) Positive group psychotherapy modified for adults with intellectual disabilities. Journal of Intellectual Disabilities, 18, 337–350.Google Scholar
Treloar, L. L. (2002) Disability, spiritual beliefs and the church: the experiences of adults with disabilities and family members. Journal of Advanced Nursing, 40, 594–603.Google Scholar
Trute, B. and Hauch, C. (1988) Building on family strength: a study of families with positive adjustment to the birth of a developmentally disabled child. Journal of Marital and Family Therapy, 14, 185–193.Google Scholar
Udvari-Solner, A. (1997) Inclusive education. In Grant, C. A. and Ladson-Billings, G., eds., Dictionary of Multicultural Education. Phoenix, AZ: Oryx Press, pp. 141–144.Google Scholar
Voelker, R. (2002) Improved care for neglected population must be “rule rather than exception”. Journal of the American Medical Association, 288, 299–301.Google Scholar
Wolfensberger, W. (1972) The Principle of Normalization in Human Services. Toronto: National Institute on Mental Retardation.Google Scholar
Wood, J. B. and Parham, I. A. (1990) Coping with perceived burden: ethnic and cultural issues in Alzheimer’s family caregiving. Journal of Applied Gerontology, 9, 325–339.Google Scholar

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