MNST 6115 Spiritual Issues in Chronic Illness and Disability North (PDF)

11 MNST 6115 Spiritual Issues in Chronic Illness and Disability North Park Theological Seminary 3225 W. Foster Ave. Chicago, Illinois 60625-4895 June 11-14 with some online work following THE FACULTY Mary Chase-Ziolek, Ph.D., R.N. Professor of Health Ministries and Nursing [email protected] 773-244-6201 Guest Lecturer: Elizabeth Pierre, PhD, Assistant Professor of Pastoral Care and Counseling Psychology COURSE DESCRIPTION This interdisciplinary course explores the spiritual issues faced by the individual, family, congregations and communities living with chronic illness and disability. Particular attention will be given to the concerns of professional caregivers and the church seeking to provide effective ministry. Throughout the course we will proceed with a lens toward a hospitality of embodiment taking care to address spiritual issues for the “disabled” of body and the “disabled” of acceptance. The social and personal construction of meaning within the experience of chronic illness and disability, as well as cultural dynamics and ethical issues will provide an overarching course framework. The disciplines of practical theology, nursing, social and human sciences will inform our discussion, drawing upon resources from the Bible, Christian tradition and the experiences of class participants. This course contributes to achieving the learning outcomes of building ministerial identity and skill as well as contextual communication. 3 credits. OBJECTIVES  Apply a theological anthropology in such a way as to integrate being in the image of God yet living with a disability or chronic illness.  Articulate an understanding of the factors impacting one's growing capacity to discern the difference between identifying with one's illness without becoming identical with it.  Utilize an interdisciplinary approach to the study of spirituality, chronic illness and disability.  Examine the socio-cultural construction of our understanding of chronic illness and disability with a lens toward an increasing ability to discern the significance of race, gender, class, and ethnicity for appropriate and effective healthcare and pastoral care responses.  Explore and integrate issues of spirituality faced by caregivers, families, congregations and those who identify as chronically ill and/or living with a disability. FORMAT The class is offered in a blended format with class meeting from 8 am – 5 pm, Monday through Thursday and some additional online work following. Advance preparation is required  22 including reading and some writing prior to class with other assignments submitted following the week of class. ADVANCE PREPARATION The intensive format of this course requires advance preparation. The following assignments are to be completed before class begins.  Reading three of the required texts as noted  Interview and written summary (see #5 course requirements) COURSE REQUIREMENTS 1) Attendance and participation: Punctuality, full attendance, and constructive participation are expected. This is 20% of the course grade. 2) Required Reading: The required readings provide background for course lectures and discussion. The following books should be read before the class meets 1. Marva Dawn, Being Well When We’re Ill. Minneapolis: Augsburg, 2008. ISBN-13: 978- 0806680385. 2. Arthur Frank, The Wounded Storyteller: Body, Illness and Ethics. 2nd edition, Chicago: University of Chicago Press, 2013. ISBN-13: 978-0226004976ISBN **Note: This book should be read before conducting your interview 3. John Swinton, Becoming Friends of Time: Disability, Timefullness and Gentle Discipleship. Waco, TX: Baylor University Press, 2016. ISBN-13: 9781481304085 The following book can be read following class 4. Amos Yong, The Bible Disability, and the Church. Grand Rapids, MI: Eerdman’s, 2011. ISBN 978-0-8028-6608 3) Recommended Reading 1. Shane Clifton, Crippled Grade: Disability, Virtue Ethics, and the Good Life, Waco, TX: Baylor University Press, 2018, ISBN 9781481307475 2. William Gaventa Disability and Spirituality Recovering Wholeness. Waco, TX: Baylor University Press, 2018, ISBN 978-1481302791. 3. Stanley Hauerwas and Jean Vanier. Living gently in a violent world: the prophetic witness of weakness. Downers Grove, Ill: InterVarsity Press, 2008. ISBN: 0830834524 . 4)Reading Responses A personal response should be your interaction with the material and not a summary. 1. Being Well When We’re Ill. Write a 300-500 word personal response to this book, quote in full a few sentences that are significant to you, and formulate a question which arises out of this reading. Include page numbers where appropriate. How might this text speak to a faithful response to those living with a chronic illness or disability? Due Tuesday, June 11.  33 2. Becoming Friends of Time: Disability, Timefullness and Gentle Discipleship. Write a 300-500 word personal response to this book, quote in full a few sentences that are significant to you, and formulate a question which arises out of this reading. Include page numbers where appropriate. How might this text speak to a faithful response to those living with a chronic illness or disability? Due Wednesday, June 12. Your reading response is 15% of the course grade. Note: The reading from The Wounded Storyteller will be integrated in your interview and The Bible Disability, and the Church will be integrated in your final project. The paper should be submitted through the link on Canvas. Come prepared to discuss your reading reflections in class. Grading Rubric for Reading Reflections 7.5 points for each reflection Topic Exemplary Competent Developing Brief summary highlights key points and areas of personal interest /2 points . /1.5 points /1 point Questions raised by the reading identified /1 point /.5 points /.25 points Insight gained: what did you learn? What additional questions did it raise? /3 points /2 points /1 points Clearly written and well organized without grammatical errors /1.5 point /1 points /.5 points Missing components will receive 0 points 5). Interview Conduct an interview in person with someone to whom you are not related who has a chronic illness or disability or who is currently a primary caregiver for someone with a chronic illness or disability, following the guidelines and grading rubric at the end of the syllabus. A comprehensive written summary of the interview 5-7 pages in length is to be submitted on the first day of class. Please submit through Canvas and bring hard copy to class. Interview papers will be shared and discussed with the class. The interview assignment is 25% of the course grade. THE FOLLOWING ASSIGNMENTS WILL BE COMPLETED AFTER CLASS MEETS Class meets for four days. The following assignment allows for independent work for the 5th day of class.  44 6) Online community for persons living with a disability or chronic illness Search the internet looking for personal narratives of illness that are instructive and insightful. You might do a general search or by a particular illness or condition that might be of interest to you such as bipolar disorder, cerebral palsy or families with children with autism. There are many personal web pages, videos, blogs and discussion rooms for people with various conditions. Are spiritual issues implicit, explicit or absent? Identify how you might use some of these resources in ministry or healthcare. Consider how the internet and social media have influenced individual and collective narratives of living with chronic illness or disability. Post your findings in the discussion forum in Canvas. Due by June 22. 10% of grade 7) Final Project provides an opportunity to integrate course readings and class work due July 27. The final project is 30% of the course grade. Theological/Clinical Reflection:  Articulate your own question incorporating both a theological and a praxis issue related to spiritual issues in chronic illness and disability that is meaningful to you in your ministry or practice.  Write an essay that responds to your question.  Describe why you chose the question.  Discuss what other questions you considered but eliminated and why.  Read Amos Yong, The Bible Disability, and the Church. Grand Rapids, MI: Eerdman’s, 2011. ISBN 978-0-8028-6608 Alternatively you can suggest another book to be approved by your professor  Apply to a congregation or place of service. How would you develop a ministry with persons living with a chronic illness or disability that addresses your question? o How do you conceive and work with someone in a way that cultivates their autonomy, uses their gifts & recognizes their limits? o How might caring and serving be mutual between those who are temporarily able-bodied and those who are disabled? Integrate the Yong text and course readings using appropriate footnotes and a reference list. Additional resources can be used as well. The paper should be a minimum of 8-10 pages of text (not including title page and references) double spaced and size 12 font. The reading listed below may be helpful for the theological reflection. Read your own denomination’s resources on disability, or if your denomination does not have any, choose one of the resources below.  “Liberation, Inclusion, and Justice: A Faith Response to Persons with Disabilities”by Nancy Eisland found at http://ici.umn.edu/products/impact/143/over02.html  Evangelical Covenant Church, Disability Resources https://covchurch.org/justice/disability/tools/resources/ ; http://www.covchurch.org/idea-exchange/disability-resource-manual-a-practical- guide-for-churches-and-church-leaders/  Presbyterians for Disability Concerns https://www.presbyterianmission.org/ministries/phewa/pdc/  Evangelical Lutheran Church of America Disability Ministries https://www.elca.org/Our-Work/Congregations-and-Synods/Disability-Ministry  Lutheran Church Missouri Synod Disability Ministry https://www.lcms.org/social- issues/disability  55  African American Lectionary http://www.theafricanamericanlectionary.org/PDF/DisabilityAwareness_WR_Oct1 710.pdf Grading for the theological reflection will be based on the theoretical grounding of the essay (50%) demonstrating an integration of course readings, reading you have done in other disciplines or for pleasure and the practical application (50%) of the essay question for ministry or health care settings. Course Grading Class Participation 20% (includes assignments during week) Reading Response 15% Interview 25% Online Community 10% Final Project 30% For grading scale refer to seminary catalogue. Criteria for grading written assignments and projects: A/A- Well-written with no errors (spelling, sentence fragments, unclear sentences, etc.). Excellent analysis and well-supported conclusions. Demonstrates complex understanding of topic and familiarity with supporting sources (readings, online resources and discussion). Fully and clearly responsive to question(s) asked. B/B- Moderately well-written with few errors. Good analysis and well-supported conclusions. Demonstrates correct understanding of topic and familiarity with most supporting sources (readings, online resources and discussion). C/C- Content may show either less than correct familiarity with the topic or bulk of supporting sources, is not fully responsive to the question(s) asked, or is poorly written (major mistakes made). Late Assignments: It is important for our class discussion during our intensive week that assignments be submitted by the deadline. Any requests for an extension should be made to the professor prior to the due date if requesting an extension. Late papers will be reduced 1/3 of a letter grade for each day that it is late per day, i.e, an A paper will become an A-, and so on. Academic Honesty: In keeping with our Christian heritage and commitment, North Park is committed to the highest possible ethical and moral standards. Just as we will constantly strive to live up to these high standards, we expect our students to do the same. To that end, cheating of any sort will not be tolerated. Students who are discovered cheating are subject to discipline up to and including failure of a course and expulsion. For further information on this subject you may refer to the Academic Dishonesty section of the University’s online catalog.  66 Students with disabilities North Park Theological Seminary provides services for students with documented disabilities to ensure equal access to programs, services, facilities, and activities. Students with a disability who believe that they may need accommodations in this class are encouraged to contact Seminary Academic Services as soon as possible. 773-244-6217. If desired or necessary, discussion pertaining to documentation and accommodation can take place at another suitable location or by telephone. Further information about the American Disabilities. Services is found in the Student Academic Handbook Course Content A detailed daily schedule will be provided in the final syllabus Many Voices: Words and Images from the Arts Each day we will take a look at how issues of chronic illness and disability are portrayed in music, literature, poetry, art or movies Framing the Issues  Body, Self and Society  Medical and Social Paradigms for Understanding Chronic Illness and Disability  Mis-use of Faith in the Experience of Chronic Illness and disability  Normalcy and Otherness  Theology of Disability Exploring Topics  Role of Narrative in Sharing the Experience of Illness  When the Body Hurts  Mental Illness and Mental Capacity Chronic Illness and Disability in Context  Gender and Illness  Race, Culture and the Experience of Chronic Illness & Disability  Experiencing Chronic Illness and Disability within the Family Faithful Response  The Community of Faith Responds to Chronic Illness and Disability  Redefining Wholeness for Individuals, Families, Congregations and Communities  Spiritual Issues in Chronic Illness/Disability  For those living with chronic illness or disability  For those who are “temporarily able bodied”  Pastoral and clinical responses  77 INTERVIEW GUIDELINES Confidentiality When people share their lives and experiences with us it is important to remember that even if they are very comfortable with us, these are personal stories and we should treat them with the utmost respect. Towards that end, the following are guidelines for the treatment of interview material: 1. The interview should take place in person and in a setting that offers privacy. 2. You should inform the person you are interviewing that a written summary of the interview will be shared with class and that all identifying information will be removed. If the interview is taped, you should let the person know that the taped version will not be shared with the class. 3. The information of the interview should not be shared outside of this class setting whether or not you deem it to be private. Person to be Interviewed You should select someone to whom you are not related (either through blood or marriage) who is either: 1. A person with a chronic illness or disability (some examples would be multiple sclerosis, lupus, spinal cord injury, cerebral palsy or other disabilities related to birth, or sensory impairment such as being blind or deaf) 2. Current family caregiver providing significant support for a person with a chronic illness or disability Prior to the interview 1. Complete the Wounded Healer by Arthur Frank. NOTE IF WE CHANGE HOW WE INTRODUCE THIS MATERIAL 2. Reflect on your assumptions about what you think about persons with a chronic illness or disability. What assumptions do you have about what it would be like to be a family caregiver? Keeping an open mind and minimizing preconceived notions about the experience of having or caring for someone with a chronic illness or disability will enhance the interview experience for both you and the person you interview. The interview The interview must be conducted in person. It cannot be by phone or email. You should allow 45 minutes to one hour for the interview. Taping the interview is probably best for capturing what is said if you have good equipment. Another option is to take extensive notes.  88 Questions You are required, but not limited to covering the following questions in the course of your interview, making adjustments in the wording depending on if the person you are interviewing has a chronic illness or disability or if they are a family caregiver. 1. Identifying information: age, gender, race, ethnicity, religious background. Give us a picture of who this person is. Where does this person live? Is it an urban, rural, or suburban community? Do they live in a house or apartment? Do they live alone or with family. This information should provide a picture of the person’s social context. 2. Ask the person about the history of their chronic illness or disability or caregiving activities. 3. Describe a typical day in your life. 4. What has been the impact on your life of having the chronic illness or disability or of being a caregiver? 5. Where do you find your greatest support? 6. What are the challenges and opportunities of your situation? 7. How would you describe your spiritual life? How has your experience of living with chronic illness or disability impacted your spiritual life? 8. What has your experience been with the church and local community in relationship to your chronic illness or disability or caregiving work? 9. What has your experience been with the health care system? 10. What is it like to live with people who do not share your chronic illness or disability? Or what is it like to like to live with someone with a chronic illness or disability? 11. If you were giving the introduction to your autobiography, how would you describe your life? 12. What would you like to say to the church and/or the health care system? Writing up interviews You are to provide a written discussion of your interview, approximately 5-7 pages that includes the following: 1. Brief description of the environment in which the interview occurred. 2. Personal description of the interviewee, summary of their story and why you chose this person to be interviewed. 3. Narrative summary of the interview. While the whole interview should not be transcribed verbatim, quote sections of the interview for illustrative purposes to identify key points. 4. Arthur Frank in The Wounded Storyteller identifies three dominant themes in illness narratives, the quest, restitution or chaos. Describe any ways that these themes were reflected in your interview. Are there any other themes that emerged from the interview? 5. What was your overall response to the interview? What challenged you? What surprised you? 6. What did you learn from the interview?  99 Grading Rubric for Interview Exemplary Competent Developing Context: Setting & person interviewed Follows guidelines completely. Setting chosen facilitates conversation well. Reason for choosing person interviewed identified and follows criteria 2 pts Conducted in person in setting not optimal for discussion. Person interviewed meets assignment criteria 1.5 pts Conducted in person in setting not conducive to discussion and/or person interviewed does not meet assignment criteria. 1 pt Narrative Summary Interview summary integrates required questions and demonstrates well thought out conversation occurred; follow up questions identify active engagement 6 pts Interview summary demonstrates good conversation with most required questions included; some identification of followup questions 4 pts Interview summary is disorganized and does not demonstrate coherent conversation 2 pts Interview Themes Identification of themes demonstrates strong analysis of interview and accurately integrating reading from Wounded Storyteller. Any additional themes identified demonstrate insight 2 pts Identification of themes demonstrates moderate analysis of interview and is generally accurate understanding of reading from Wounded Storyteller. No additional themes identified 1.5 pts Interview themes do not demonstrate insight from the interview or an understanding of reading from the Wounded Storyteller 1 pt Personal Response & Learning Discussion of response & learning demonstrates strong personal reflection and awareness. Learning identified demonstrates synthesis and analysis of interview 3 pts Discussion of response & learning demonstrates minimal personal reflection and awareness. Learning identified demonstrates an understanding of interview 2 pts Discussion of response & learning does not demonstrate insight. No evidence of synthesis or analysis 1 pt Writing Format Paper is well organized, formatted and written with clear meaning and without grammatical errors. 2 pts Paper is generally well written and clear with few grammatical errors. Organization is adequate 1.5 pts Paper is disorganized with many errors in grammar and/or formatting 1 pt Missing components will receive 0 points