* * * * * * ·* * * * * * * * * * * * * * * Disability Studies Quarterlly ISSN 1041-5718 *· i * * r * summer 1995 * * Volume 15 No. 3 * :j· * * * * ' * * * * * * * * * * * * * * * * * *

Founding Editor: Irving Kenneth Zola (1935-1994) · Editor: David Pfeiffer Book Review Editor: · Elaine Makas. Publishers: Suffolk University and Brandeis University Copyright 1995 All Rights Reserved

Issue Theme:· Religion, Spirituality, and Disabilit1y Guest. Editor for this issue: . Fred Hafferty .

Editor's Preface Disability Studies Quarterly originated as the Disability Newsletter. This newsletter was started by Natalie Allon who published the first issue (volume one, number one) in. July 19800 There is no record of any further issues published in 1980 and·in 1981. In July 1982 Profess·or Irving Kenneth Zola published volume · two, number one, and renamed it the Disability ·and Chronic Disease Newsletter. In that issue Irv wrote that Natalie could not continue to ·publish it due to an accident, but that he would do so. He renamed it Disability Studies Quarterly in 1986. Irv, the first president of the Society for Disability studies, also established links between Disability Studies Quarterly and the Society which continue today.· · After Irv's death a Disability studies Quarterly Steering Committee was created. It is composed of Judy Norsigian, Howie Baker (Heller School, Brandeis University), Gunnar Dybwad (He1ller School, Brandeis University), Janet Boudreau (former Managing Editor, Disability Studies Quarterly), Elaine Makas (Lewiston Auburn ·college of the University of southern Maine), Adrienne Asch (Wellesley College), and David Pfeiffer (Suffolk University). The Steering Committee and the Society are working together to establish a· permanent home for Disability studies Quarterly. The Samuel Gridley Howe Library in Waltham, Massachusetts, is the repository for past issues of Disability Studies·Quarterly. Irv's papers and books as well as the books, papers, and manuscripts of· Rosemary and Gunnar Dybwad are also deposited there. Bonnie ·Stecher is the librarian at the Howe Library. Bonnie ·deserves the credit for the historical information about the origins of the Quarterly. , As a result of the hard work of Janet Boudreau, Howie.Baker,

1· Richard Scotch, Beth Haller, and others the Winter and Spring 1995 issues of Disability studies Quarterly were published. This Summer 1995 issue in the first one under the editorship of David Pfeiffer who will continue as editor in 1996 and possibly 1997 as the Society and.the Quarterly Steering Committee work together to secure its future. The Fall 1995 issue will have the theme of disability culture with Steve Brown (Institute for Disability Culture) as guest editore The Winter 1996 issue will be a generic one continuing Irv's tradition. At present it is anticipated that the Spring 1996 issue will have the theme of ethnicity and disability with Elaine Makas as guest editor. Other planned issues are: developmental disabilities (Summer 1996) with Phil Ferguson as guest editor, the new economics of disabilities (Fall 1996) with Corinne Kirchner as guest editor, a generic issue (Winter 1997)~ and disability history (Spring 1997) with Paul Longmore as guest editor. An editorial board is being created. ' ' The editors, the Steering Committee, and the Society thank Suffolk University and Brandeis University for their support in publishing this issue. We also thank you, the subscribers, for your support which is critical for the continued existence of Disability· studies Quarterly. David Pfeiffer, Editor

A table of contents will be found at the end of this issue&

Introductory Essay and spirituality than disability, Irv replied; "Don't Fred Hafferty worry. Just put a couple of Guest Editor things together and I'll take care of the rest." This special issue on What follows is my attempt Religion, Spirituality, and to construct a broadly-based Disability is the ~econd of overview of this topic area. I three special issues conceived wanted to provide readers with a and organi~ed by Irving Kenneth diverse collection of Zola prior to his untimely death "snapshots" or "takes" with the on December 1, 1994. As fate \ hope that across the sum total would have it, Irv and I were of these individual able to spend a scant 20 minutes .contributions, readers would be brainstorming what this issue able to construct for them~elves should look like and how it some sense of the range of might come together. In issues that could .fall under response to my protest that I this banner. To maximize the knew even less about religion number of contributors and

2 topics covered, individuals were in its religious orientation. asked to limit their writing to This is not to say that only a brief 3-4 pages. My personal Christian-based·organizations interest.involved how the are committed to addressing scriptural foundations of issues of· access and · different religions traditions participation for ·persons with depicted issues of disability in disab:.\.lities·, but I did find it their sacred writings. interesting.that a rather strong Similarly~ I was interested in formal and informal network does any official statements or exist within the Christian policies emanating from religious community with respect religious heads regarding issues to issues of religion, of disability•.Readers will see spirituality, and disability. this interest -reflected in some There most certainly are other of the· articles that touch.upon religious ·organizations and the New Testament along with an service networks out there. I informative glimpse into Asian just didn't happen to encounter .disability.history. On the them·. Individual readers will other hand, due to the vagaries do well to explore what .is-:--and of people's schedules along with what is not--available within the omnipresent influence of their own communities. chance, readers will find little · · In spit·e of the rather on the Old Testament or on other dominant theological and religious traditions ~tich as organizational presence of Mormonism, .Native Americ,an, or Christianity in this issue, indigenous African religions--to readers will be quick to note name.but a.few. that all of ·the.c,ontributors do -A second area of . not view either the issues or interest--given my Ivory Tower their solution through a similar roots--was how different lens. Across the individual academic disciplines might come. contributions, readers will to. frame issues of religiqn, . encounter a number of points of spirituality, and disability. view--not always complementary. Three contributors, Andrew As might be expected, issues of Ach,enbaum (history), Nora Groce religion,·spirituality, and (anthropology) and Robert di~ability are broad ranging, Enteen,. (Health Services multifaceted, a.nd always Research). represent examples-of involving some measure of how disciplines other than ambiguity. . Topics range· from disability studies or religion scriptural, to issues of access might frame questions and seek and service, to the training of answers to questions about the religious.leaders on how to relationships among the topics. address issues spirituality and of religion, spirituality, and disability in their ministry. disability. · On a more political front · As ± began to identify readers will find that the possible 9ontributors, I q~ickly relationship between the found mysel~ drawn into a Americans with Disabilities Act .. network of individuals and. and religious organizations is organizations that was more not without it own set of service oriented .than academic conflicts and controversies. and that wa.s decidedly Christian If I learned anything

3 singular message about the· Focus topics of religion, spirituality, and disability in Religion and Disability Studies: my brief foray, it is the Thoughts on the Status and . emergent and nascent nature of Future of an Emerging Dialogue this field. The networks are new, highly per~onal (rather by Nancy L. Eiesland, Ph.D. than organizationally based),· As~istant Professor, Sociology and anchored by individuals of Religion, Candler school of often elementally involved in Theology, Emory University, the disability community and who Atlanta, GA 30322 hold deep religious convictions.· Giv~n that my own inclinations The experience of are more spiritual than disability has been an enduring religious, the opportunity .to area of·religious involvement talk with many of these and spiritual exploration. remarkable people has been a Avalbs (1995) has traced personal as well as a learning discussion of disability to experience. One thing I can religious writings from .claim with absolute confidehce Mesopotamia,· Greece, Israel, and·· is that this is not the last other areas of the ancient Near time you will hear about these East. Temples, he argues, topics. Conferences are being played a particularly important organized (see Announcements role in the eare ~f the disabled section), a few important books in these ancient.societies. In and resource materials have been the Middle Ages,· religious published· (see Resources), a organizations, such as journal has-been formed (Journal· monasteries and hospitals, also of Religion in Disability and often assumed responsibili.ty for Rehabilitation), and readers the care of people with should note an upcoming special disabilities (Whyte 1995; .Turner double issue of Rehabilitation 1984).- Historically, religious Education, with ~he table.of charitable soc,ieties·assisted contents and ordering with often humane care and information reproduced lat~r in financial supptirt.

this issue. 1 However, religious Whenever possible, I have institutions have also been etideavored to prbvide enough implicated in long-standing information about contributors cultural interpretations that to allow interested readers ·to construe people with contact them. They are a disabilities as tragically or special group of people .. sinisterly sinful or 'flawed In closing, I want to (F0ntaine 1995). Organizations restate my appreciation to Irv which took it a~ their religious for the opportunity .to be duty to care for people with involved in this project. He disabilities sometimes devolved had a penchant for taking me in into segregationist lock-ups for directipns I never dreamed those deemed·unworthy. Though possible. the notion of disability has never been religiously neutral, its meanings within diverse religious, cultural, and

4 historical contexts have only The body of literature very recently begun to be generated by individuals with explored as a significant disabilities who have written thematic in religious studiesa ·their lives, often in terms of In Part I of this essay I their religious struggle and will present a general overview spiritual survival or loss of of the emerging field. In Part faith, has flourished in modern II, I pres·ent a summary and some times. The narratives of these pressing issues concerning individuals, such as Helen disability studies in religion. Keller, Nancy Mairs, R~ynolds · Part·I. A Sketch of the Price, and Joni Eareckson Tada, Current Status of .Disability reveal that religion and · studies in Religion spirituality often have created The exploration of space for his or her own self- disability in religion has determination in diverse proceeded in three directions, historical and social settings. i.e., religious autobiography These people often seek to and biography of people with understand, evaluate, change, disabilities and/or their and/or embrace religious ideas caregivers; pastoral care, for him or herself in terms of religious ethics, and theology; his or her own experience of and disability in religious disabilityc On the whole, this studies. Religious biographies genre is individualistic and and autobiographies offer directed as inspiration, experiences and exemplars which comfort, or challenge to other are important sources for the individuals. Sometimes these spiritual identity of people accounts are stylized narratives with disabilities. The · of spiritual overcoming, while examination and elaboration of others aim to raise religious ideas· by pastoral consciousness among people with and/or academic specialists has disabilities and the able bodied been anothe~ area of ongoing and to develop a plausible and researche This effort includes workable religious worldview as theology, religious ethics, and it relates to personal pastoral care and liturgical or experience. Though these ritual guidance. To date, most religious stories of p~ople with of this work in English has been disabilities ~ometimes do not done in Christian and Jewish fit easily into the socio~ traditions. Finally, disability political rubric of contemporary in religious studies designates disability studies, they are a academic work which utilizes largely untapped resource for social scientific and humanistic researchers. Now internet .theories and methods in discussion groups are also understanding disability within providing important forums for a multicultural religious interchange among people with context. To be sure, disabilities often about considerable overlap exists spiritual and religious among these categories. Yet experience. each area within disability Theology, religious ethics, studies in religion defines its and· pastoral care and liturgical distinct primary goals, guidance, written by academic audiences, and methods. and pastoral specialists,

5 represents the vast majority of experience and interpretation of ·the scholarly work in disability faith, their ministry in the studies in religion. This body churches, their self- of literature represents the understanding. People with intellectual reflection on the disabilities have become the experience of the nature of ·subject.of a new theological ultimate reality, of human life approach rather than simply in its individual and collective being the object of theology, forms, and/or of the natural ·creating theology, ritual; and world of which human beings· form care-giving strategies rooted·in a part. Though audi~nces for the religious experience of this work _are varied, the common people with disabilities

factor is that it is directed themselves. . ) primarily toward people of faith Finally,_ an emergent genre. in order to promote religion and in disabi+ity stuqies in spirituality. The intellectual religion is research which scope in this work is employs humanistic and social, . tremendous. Theologies which scientific methods and-theories address concerns of people with to explore disability as a disabilities may be thematic in religious studies, liberationist (Lane 1993~ as has been the case with·· Eiesland1994), Reformed (Cooper gender, racial, and ethnic 1992; Webb-Mitchell, 1994), perspectives.· The primary goal feminist (Devries 1994; of this work is not to promote Roundtable 1994), Lutheran religious belief or practice, (Govig 1989), or philosophical but rather to understand it (Pailin. 1992). They may contextually, comparatively, and emphasize other-worldly or this- multiculturally. Examples of worldly responses. Ethics may this type of research in . emphasize.communitarian or. disability studies in religion rights-oriented goals (Bishop· are less numerous than t~e 1994). Pastoral care manuals previous two types. represent an array of religious Nevertheless~ the inauguration· traditions (Wilke 1980; .Foley this year of a consultation in 1994). The new Journal of religion and disability studies Religion in Disability and· in the American Academy of· Rehabilitation largely publishes Religion represents an .important work in this class. I 'also development. The consultation's include in this category call for papers attracted an official theological statements unusually large number of. endorsed by official religious submissions, indicating the bodies, such as denominations .. existence of extensive work in The tone. and perspective of religidn and disability studies this work also varies widely. which has, to.date, lacked a Historicaliy, the experience of scholarly forum. Over time, people·with disabilities has this consultation ·will.hopefully been an untapped source for provide a location for cross- theology, often even theology cultural, inter~religious. related to disability. However, discussions of the relation of increasingly people with, religion and disability. Topics disabilities write about to be addressed over the life of . t . themselves, about their the religion and disability

6 studies unit will include riiual distinction between the general innovations for and by people religious beliefs and with disabilities: peciple.with contextualized explanatory disabilities and theological models which were revealed in ., ' interpretations of theodicy and anthropological field research tragedy: HIV-AIDS and religious in Botswana. This typ~ of belonging and meaning-making: research is beginning to.provide 'j ·healing movements and people ·a nuanced and careful with disabilities: Deaf exploration of the role of aesthetics and inter-religious religious beliefs in shaping the dialogue: legitimation of · myths and attitudes. about religious leadership among disability. people with disabilities: In the past, religion, religious response to the particularly Christianity, often Americans with Disabilities Act; has been carelessly cited as the religious pluralism and the , source pf destructive myths Disabled Peoples' International; about people with disabilities. and other issues, topics, and An example illuminates: "Many historical figures which emerge people, including the disabled, from the ongoing conversation. still believe the traditional Another sign of development myths about the disabled. some in the Dield is the of these ·negative attitudes have matriculation of the first their origins in ancient doctoral student in a joint religious.beliefs that regarded program in·religion and the disabled as devil possessed, disability studies at Garrett or as corporeal manifestations Evangelical Theological Seminary of family, guilt" (Israel and and Northwestern University. McPherson 1983:14). Though this The establishment of such statement ·may be true, it is at programs can result in a new best only partial truth that area of scholarship that fails to addres~ the( embraces a wide range of particularities of religious and subjects which pertain to cultural milieus in which such disability studies and to·the myths and beliefs emerged. For study of religion and example, Whyte ( 1995) , ·following spirituality. Henri-Jacques striker, contends Part II:. Challenges and that Christianity in.the Middle Prospects Ages did not specifically · The establishment of a distinguish impairments from dialogue between thQse engaged other forms .of suffering. She in the study of religion and writes, "Infirmity (impairment] those whose work is primarily in and poverty were part of God's disability studies has begun to varied creation--the order of reveal th~ existence of multiple things. The response to discourses and complex difference was charity, historical processes in how spirituality, and morality" people with disabilities are (269). Whyte goes on to argue understood in relation to that it was not ancient religion, ethics, .biology, ·.and religious beliefs which have the instituticinal ·structures qf shaped the contemporary society. For example, Ingstad attitudes toward disability but (1995) highlights the rather it was the quest to

7 control difference borne of represent a broad enough Enlightenment. medical views. spectrum of what spirituality The role of ancient religious can mean for us" (Brown, notions in shaping contemporary Connors, and Stern 1985, 11). beliefs and attitudes about · In addition to challenging disability is an area ripe for and enriching the study of research and exploration. religion, disability studies in Another area of research religion is beginning to reveal.· yet to be·adequately explored is the contributions it can make in the multiple roles that religion the multidisciplinary milieu of and spirituality have played in disability studies. It- must be resistance, solidarity, and understood that religion survival among people with designates a significant aspect disabilities. In the arena of of a major portion of the human religion, people with· population throughout its· disabilities,have found support history•. Yinger (1970) defines systems, personal fulfillment; religion as "a system of beliefs and ultimate purpose that cannot and practices ·by mearis of which be igno.red by ·scholars in a group of people struggles·with disability studies. This [the] ultimate problems of ~uman history must also be related. life" (7). For people with In so doing, we also counter the disabilities challenging the prevailing sentiment that the problem of oppression, .religion religious practices and history is likely to remain an important of the able-bodied constitute resource. Even as the study of the only relevant spiritual religion is increqsingly pulse and narrative, and that influenced by disability studies whatever is outside this ambit and culture, so must disability is of little if any significance studies expand its intellectual to the study of religion~ map adequately to include the In.challenging this false study of religion. universalism in others, scholars of religion whose focus or· Selected References: purview includes disability Avalos, Hector. (1995) studies are also challenged to Illness and Health Care in the develop greater inclusivity Ancient Near East: The Role of within their own work--relating. the Temple in Greece, gender, ethnicity, race, and Mesopotamia, and Israel. diverse disabilities to the Harvard Semitic Monographs,, no. study of religious life. \Such 54. Atlanta: Scholars Press. diversity can ensure that·we no. Bishop, Marilyn E. (1994) longer have the problem Religion and Disability: Essays experienced by. the editors of in Scripture, Th~ology, and the anthology, With the Power of Ethics.· Kansas City: Sheed and Each Breath, who wrote: "We Ward. planned to include a chapter on Brown, Susan~ Debra spirituality. Many women with Connors, and Nanci Stern. disabilities seek spiritual (1985) With the Power of each assistance.for strength and Breath: A Disabled Women's· solace as we .face the things Anthology. Pittsburgh: Cleis that can't be fixed. But the Press. articles we received did.not Cooper, Burton.· (1992) "The

8 Disabled God," Theology Today Victimization of Persons: 49(2):173-82. Issues of Faith-healing for Devries, Dawn. (1994) Persons with Disabilities .. " The "Creation, -Handicapism and the Dlsability Rag Resource Community of Differing 14(3):11-13. Abilities," in ~ebecca s. Chopp Mairs, Nancy. (1993) and Mark L. Taylor, eds. Ordinary Time: Cycles in Reconstructing Christian Marriage, Faith and Renewal. Theology. Minneapolis: Boston: Beacon Press. Fortress. Pailin, David. (1992) A Eiesland, Nancy. (1994) The Gentle Touch: From a Theology Disabled God: Toward a of Handicap to a Theology of Liberatory Theology of Human Being. London: SPCK •. Disability. Nashville: Abingdono Price, Reynolds. (1994) A Foley, Edward. (1994) Whole New Life. New York: Developmental Disabilities and Atheneum. Sacramental Access: New Roundtable on 11 Women with Paradigms for Sacramental Disabilities: A Challenge to Encounters. Collegeville, MN: Feminist Theology," (1994) Liturgical Presso Journal of Feminist studies in Fontaine, Carolee (1995) Religion 10(2). "Disabilities and Illness in the Tada, Joni Earecksono Bible: A Feminist Perspective" (1994) Joni. Revised edo Grand in Athalya Brenner, ed. Feminist Rapids: Zondervano Companion to the New Testament .. Turner, Bryan S. ·( 1984) The Sheffield: Sheffield Academic Body and Society. Oxford: Press. Basil Blackwell Publishers. Govig, Stewart. (1989) Webb-Mitchell, Brett. Strong at the Broken Places: (1994) God Plays Piano, Too: Persons with Disabilities and The Spiritual Lives of Disabled the Church. Louisville: Childreno New York: Crossroadso Westminster/John Knox Press. Whyte, Susan Reynoldsc Ingstad, Benedicteo (1995) (1995) "Disability between "Mpho ya Modimo--A. Gift from Discourse and Experience" in God: Perspectives on 'Attitudes' Benedicte.;.Ingstad and Susan toward Disabled Persons" in Reynolds Whyte, eds. Disability Benedicte Ingstad and Susan and Culture. Berkeley: Reynolds Whyte, eds. Disability University of California Presso and Culture. Berkeley: Wilke, Harold H. (1980) University of California Press. Creating a Caring Congregation: Isr~el, Pat and Cathy Guidelines for Ministering with McPhersono (1983) the Handicapped. Nashville:. "Introduction," in Gwyneth Abingdon. Ferguson Matthews, edo Voices. Yinger, J. Milton. (1970) from the Shadows .. Toronto: The Scientific Study of Women's Press. Religion. New York: Macmillan. Keller, Helen and John Albert Macy. (1976) The Story of My Life: Helen Keller. Cutchogue, NY: Buccaneer Books. Lane, Nancy. (1993) "Healing Bodies and

9 Pastoral CounselorsjReligious If the clergy have no career Professionals and People with plans to work with the Disabilities differently-abled, does it really matter how effective they William A. Blair, M.Div., D.Min. are in addressing the issues of and Dana Davidson Blair,_ R.N., disability? Is it going to M.A. impact on the lives of a pastoral counselor's clients? The author of God. the Yes, in both accounts. Religion Christian, and Human Suffering serves ordinary people who have quotes the Jewish philosopher A. accidents and diseases, who bear Heschel: "The most precious children-with congenital insights into the human conditions and develop heart situation were not discovered problems and arthritis and much through peaceful introspection more in maturity. Life is or systematic research, but change, not always for the always through the shock of better. And very often the dramatic mistakes •.•. It is parish minister will be the continually in moments of deep spiritual helper to whom people frustration, crisis and self- will turn. He or she is t~e disappointment that a person pastoral counselor. comes to radical reflection.e •• 11 Long before we became the (Arts 1993:13) This is a editors of the Journal of statement of great value to Religion in Disability and spiritual caregivers, for it Rehabilitation, we were aware describes very succinctly much that even well-educated and of what they, as professionals, experienced clergy, including need to acquire -_insights - and pastoral counselors, often did what they will encounter - human not know how to minister to suffering, faltering faith and people with disabilities. This doubt. It is also a good is especially true when it first description of the pain many becomes apparent that a people with disabilities ·feel disability is permanent, when when acceptance of their people are doubting and blaming circumstances has not been God, blaming themselves and are reached. filled with fear, anger, and Whether or not these bitterness. Of course, this is profes~ionals will have the the time of greatest need as education, experience, . well as a time when spiritual compassion, and insight a and physical suffering coexist ministry to the differently- in its rawest forma We have abled demands is debatable. been called to speak with people Most of them will probably find whose spiritual advisors labeled there is no specific training them as sinners, questioned for such a ministry included in their faith,,chastised them for their education. Some of them feeling· angry, told them they will find pastorates that are were "chosen by God" to be "an hostile to the idea of inclusion inspiration," or avoided any and acceptance. Others will· discussion of the dramatic life learn to be chaplains in changes these people and their rehabilitation facilities and in families were facing. We find -• time become genuinely helpful. no scriptural· or theological

10 support for such notions or ignored altpgether or at best behaviors; no indication, consulted as an afterthought. either, that people with Support for people with disabilities are loved less by disabilities and their families the Creator and therefore can mean the survival of the deserve less the love of family unit, and the most humankind. These ideas are the effective religious result of tradition, fear, and professionals know what support peculiar interpretations of is needed and where to find it. scripture, much of which has It is not unusual for families been taken out of context. Too to consult a minister for advice often these responses of blame about counseling, effective and dismissal are used as support groups, shared care answers to the unanswerable programs, and sources of mystery of human suffering and economic aid. Even more common do far more harm than good. is the family's need for Oftentimes the same well strength, hope, and intentioned religious und~rstanding. They, too, are professionals who walk roughshod adjustingo Yet it is a rare over scripture and feelings of minister or counselor who can their congregants with look at such a family, disabilities are ignorant of individually and as a unit, and their denomination's resources see the universal human for·help in these regards.· condition and need in them: 11 Another consideration is - ••• the immense suffering of the medical profession's humanity during the disregard of spirituality as a centuries....people.••crying out part of healing. Some with-an anguished voice: 'My facilities routinely include God, my god, why have you chaplains or pastoral counselors forsaken us?'" (Nouwen as part of the health care team, 1988:160). But we all face primarily in rehabilitation losses over time, and where life facilities, but very often their changes are inevitable, the services are thought to be helper's knowledge is a peripheral or even a hinderance necessity. to the d~livery of the more The religious system that important aspects of permits its spiritual guides to technically-based care. This remain ignorant about the.place value climate perme~tes medicine of those who are differently and limits the ability of abled in God's world must religious professionals and eventually question the depth of patients. Religious its own and its members' professionals have not always commitment to God's servicea been allowed to evaluate the Those who understand that Divine spiritual needs of people in love is not limited to the young crisis, much less minister to and strong and perfect must also these needs. This has begun to acknowledge that 1a ministry change as spiritual strength and based on that love cannot be the power of faith become more limited. apparent as aids in healing, but it is still not uncommon for the spiritual counselor to be

11 Resource List with the social movement of \, "normalization" and The following resources can "deinstitutionalization" -in the be consulted for information on 1960s and with the Americans ministry to people with with Disabilities Act (ADA) in disabilities: Virginia the 1990s, more people with Thornburgh, Religion & disabilities who were once Disability Program, National behind institutional walls, are Organization on Disability. 910 now in America's neighborhoods. 16th street, NW; Suite 600, People with either a Washington, D.C. 20006; National developmental ·disability, mental Council of Churches, News & illness, a physical .impairment, Information Office, Room 850, visual impairment, those who are 475 Riverside_ Drive, ,.New York, hard of heqring or deaf, as well NY 10115; World Council of as people who are visually ,· Churches, Justice, Peace & impaired or blind are no longer Integrity of Creation, 150 Route only the receivers of care, but de Fernet, P.a.· Box 2100, 1211 are now more active participants Geneva, 2, Switzerland; The in various sectors of public United synagogue of life, in.eluding congregations America/Association of and parishes~ In response to Conservative Synagogues in North the place and presence of·people America, 155 Fifth Ave, New with disabilities in York, NY 10010-6802;.Torah congregations and parishes, \ Organization for Disability there has been the growth of Access, 3409 Shelburne Road, curricular materials in Baltimore, MD 21208. A religious education~ Both denomination's administrative ·-Christian and Jewish educators offices may also be consulted. alike have attempted to educate people with disabilities in References these congregations about:the religious beliefs of .that. Arts, Herwig. ( 1993.) -God, particular- religious community, the Christian, and Human· as well as teaching members of ( Suffering. Collegeville;. MN:. The religious communities the issues Liturgical Press. facing people with ·disabilities Nouwen, Henri J. (1988) The with the purpose of including Road to Daybreak: .A Spiritual. people with disabling conditions Journey. New York: Doubleday. into.those communities. lhe materials that have been published by religious educators, primarily Christian Strategies· of Religious religious educators, for people Education and People with with disabilities, especially Disabilities people·with mental retardation,. are based upon secular · Dr. Brett Webb-Mitchell, The educational str~tegies of Divinity School, Duke special education that are, University, Box 90968, Durham, currently utilized in public NC 27708-0968 schools. There are primarily four general approaches that are In the past twenty .years, used in educating people ~ith . 12 . '.J,

disabilities: segregated class special Sundays or Sabbath days, approach; an inclusive or a congregation or parish will adaptive approach; special engage in an activity that all Sunday school or "Sabbath" people may participate in, Sunday approach: and a non-· regardless of their abilities or interventionist approach. limitations. It is a day set The segregated class aside once a year, in which the approach takes people with worship services, youth certain disabilities, especially programs, Sunday school classes, persons with mental retardation, or fellowship hour will be open and places all people with this to all people, disabled and non- kind of disability into one disabled alike, to be involved classroom and one set of in an activity which is activities, separate from other inclusive of the differences able-bodied classrooms. that people with disabilities Separate curriculum is published bring into congregations and for this segregated Sunday parishes. -On these special School class, based on the days, people with various · assumption that the people in disabling conditions like the classes will have a certain physical or sensorial level of social, cognitive impairments, are included. functioning, and is not based The non-interventionist upon grade or age-appropriate approach is taken by those placement. There is usually a congregations who do not teachers' guide, student necessarily have any special handbook, homework sheets, and curriculum for Sunday school, an audio cassette and film- are not program or curriculum strips. based in educating members, nor The inclusive or adaptive do they have a special Sunday or approach assumes that people Sabbath day set aside to with mental retardation or a · recognize the presence of people learning disability will be in a with disabilities in grade or age-appropriate congregational life. Nonethe- classroom, give or take a grade, less, people with disabilities and gives adaptation guides that · are included as much as they or sµpplement the regular the community of able-bodied materials. The majority of people desire into the worship these materials are written life of a congregation or primarily for early grades, parish, depending upon the kindergarten through sixth adaptations made by these grade, but not necessarily for religious communities in adult learners. The majority of enabling people with disabling the materials for this approach conditions to be part of a are aimed at people with mental congregation's daily life. retardation, .behavior disorder, A combination of the ·above and those with learning approaches are used by many disabilities" congregations. And in terms of The "special" Sunday Schooi educational strategies for or Sabbath day is based upon a people with a speech or similar model of multigenera- communication disorder, hearing tional events or activities in impairment, deaf, visual congregations or parisheso On impairment, blind, mental

13 illness, behavior disorder, or consciousness as a resource medical conditions, the developed through overcoming adaptations made in secular, difficult circumstances. ·In public settings may be employed turn, this resource can then be in religious communities. b~neficial in coping with problems in other circumstances (Miller, 1983t Hastings, 1992). Antonovsky (1987) describes a Research Paper· sense of coherence as a personal coping resource which allows Spirituality in Children.Whose individuals to see themselves as Parents Have Multiple Sclerosis participants in shaping their fate and to believe that·a Karen A. Blackford, School of legitimate auth'ority or· Nursing and Graduate Studies in spiritual.power is controlling Human Development, Laurentian events in their best interest University, Suqbury, Ontario (Antonovsky, 1987:13). Like other concepts, the Abstract· notion of spirituality can be better understood by examining Ideas about what constitutes particular empirical cases. By. spirituality vary since grounding definitions in empi- spirituality theorists rical data from children whose represent a broad range 'parents have multiple sclerosis, of disciplines and perspec- this paper identifies the ways tives. This paper will apply in which these-children demon- what appears to be a con- strate evidence of ~piritual sensus definition of spiri- development. tuality: an awareness .of one's self, in a positive Children of Parents with relationship with significant Multiple Sclerosis _ others, and with a greater The case of children whose universal community or power.· parents have a chronic disease, ~uch as multiple sclerosis which The experience of positive can·impair motor function and relationships usually has been less often cognitive function, described in association with .easily lends itself to an hopefulness (Jourard, 1970), investigation of spiritbality ~nether important component of for a number of reasons. Unpre- spirituality. Hope for dictability in the severity and transcendence has been identi- the particular symptoms of fied in various domains such as parental MS can result in dif- transcendence over present time ficult circumstances for (W~ndell, 1993), space (Nabigon, children who may experience 1994), bodily condition (Miller, disruptions in schedules 1992; Wendell,. 1993), current (Beanlands, 1989) •.Other developmental stage (Maslow, aspects of lif.e which may be 1970), mortality (Jourard, 1964) problematic for these children and life circumstances (Wendell, include stigma, low family 1993; Miller, 1992; Hastings, income, and inaccessible hous- 1992). ing, recreation, or transpor- Many see spiritual tation, that precludes the

14

• sharing of many activities with of these families have been their parents. While most early given pseudonyms in order to literature describing this protect their privacy, although population assumed negative surnames reflect their ethni- outcomes for these children city~ content analysis of (Arneaud, 1959), children with interview data related to MS may serve as an example of children's spirituality fell how one can develop and articu- into the following categories: late a sense of spirituality and awareness of life, mortality and a feeling of hopefulness given disability; hopefulness about often difficult circumstances. their own future and about the The importance for children with course of their parent's chronically ill parents of multiple sclerosis: and a sense valuing friends and of hopeful- of concern for the universal ness is supported by findings of communtty or of communion with a a previous study in which this greater power such as Godo author inv·estigated family communication (Blackford, 1990). Awareness of Life, Mortality and Following is a quotation from a Disability teenager from that study whose ·.· Philosopher Susan W~nd~ll father has MS: "It makes you (1993) refers to special appreciate your friends, what knowledge and awareness that you have.eait shows you that you comes from intimate experience can't look back •• obecause you with disability. In this study, can't look at what you could children and also their parents have done •••you kind of just with MS referred to looking dif- look ahead. It makes you live ferently at life, at disability, more for right now.a.what's and at death. One mother with going on right now in your MS, Martha Sto Denis, shared the life." (Blackford, 1990: 20). following reflections:. "I think In the present study, this with illness, I started to author explored the experiences really question what ·do I want of children whose parents have out of life. And life is multiple sclerosis in Ontario, fragile. So I really needed to Canada, between 1991 and 1993. define what my needs were and Parents who have multiple what the quality of life that I sclerosis responded to a request wanted whatever was left of it. for volunteers circulated in MS So, I thank the disease •• o Society newsletters and neuro- because it did give me courage. logical clinics. After appro-. I think I have been somewhereo priate explanations, consents to I have had·experiences that no participate in the research were amount of Ph.D's can buy from obtained from each family member sitting in a wheelchair, waiting involved. Private interviews in a mall for somebody to open were then conducted with chroni- the door; from, all kinds of you cally ill parents, their know, a whole side of humanity. spouses, and each of their That needing someone to feed me. ~hildren. A total of 18 [I] couldn't see for a while. I families and 29 children aged 8 had acute problems with my eyeso to 16 years old comprised the So, those experiences have made study population. Participants' me so rich." (Martha St. Denis, described in this paper from 7 mother with MS) 15 Willis Mills is an eight- right by the casket. Willis year old whom I think of as a asked me if he could have a pop. "poet philosopher," since he I got a pop. He goes upstairs. presented with knowledge far He climbs onto· that thing.· .He beyond his years. Willis ~.aced sits on it. I never;stopped his uncle's death and chose to him. My mother-in-law is say goodbye. to him in his own watching all this. -She knows of way. Willis' father describes the relationship. He sits here-an incident which clearly there, leans over, 1 pats James' showed a willingness on the part hand, .leans back, pops the can of his family,· and an under- of pop with all these people standing on the part of Willis, around him and·throws [drinks] to acknowledge that we are it back and leans over and·holds mortal: "That December my his uncle's ·hand. The tears brother-in-law James, who was come down his eyes. And he twenty-four, was rushed to the dealt with it. And we knew he hospital. He was dead.before we would•.This is what he did and got there. This is my wife's, this is.part of the· make up of youngest brother. He was the what Willis is. He's very one that cared for Willis when I loving, a really sensitive kid. was in the hospital. My wife He's. had to give up things too. 1 and him were very close. Willis But we've always tried to com- and him were like this [gestures pensate and he does too. He holding two straight fingers goes half way. Not all the together]. The.way Willis dealt time. He's still a kid you with this, at the funeral is know." (Luke Millsi father with important. We had to explain to MS). . him about de.ath. This isn't We ·see here a family and a just anybody. This is his Uncle boy-for whom the order of life James, the one that had bought includes disability and death. his first tishing kit•. James Family members.make room for would always sneak Willis·pop. ideas from both adults and That was one of the things he children about how to say good- could drink with ulcerative bye when death comes. Willis colitis. James was at his- has come to understand. that we parents. We left Willis there are all touched by mortality. to be babysat by his "Ma Mere." He participates in the process James would be there. They'd of grieving and chooses his own watch hockey games together. way to say goodbye. In one They had their own relationship· respect his experience is a deep on their own." (Luke Mills, burden•. In another, it is a Father.with MS) form of liberation, a knowledge After sharing this back- of the human condition which ground of the relationship many others only arrive at much · between Willis and Uncle-James, later·in life. . Mr. Mills went on to describe. how Willis demonstrated unusual Hopes f·or the Future knowledge about how to communi- . Chiidren in the study also cate his feelings: "Willis went expressed hopeful, yet realistic to the funeral. He saw his attitudes about the future of uncle in the casket. They have family members, including their the kneeling pedestal. You pray. ill parents, and about their own·

16 future. Penny Chapman described house by then. My Mom will her hopes;regarding her fathe~ s hopefully~be better by that physical condition: "I'm not time." (Jillian Workman, age 9) .. asking for a miracle that he'll Alain Gagnon also describes walk someday. But getting his hopeful plans for himself better, where he'll maybe be. and for his father·who has MS. able to use his walker and walk "No I might.not stay in [this_ • with the walker.around, stuff town]. I might be going into like that, or have enough say the NHL. st. Louis, Boston, streng'th. _ ~ike , when we go on anywhere. Dad'll probably move. vacation, we can't take his This house is getting too old electric wheelchair because of anyways.· He doesn't like the the acid batteries, so we'll city. He'd _stay around here. take his push wheelchair. Maybe Get another house. (Alaine_ just enough strength to push · Gagnon Jr., age 10). that." (Penny ,Chapman, age 11). I asked Willis if he Penny's expectations for 1 expected to live in the same her own future are also hope- house when he grows .up.·. His ful, yet realistic enough to answer reveals a generally include contingency plans. optimistic view of the future "I plan to go to university, and faith in his father who i~· either (the local) university or alsb hopeful~ "No, I don't. I somewhere down in Toronto. In don~t think so because my dad· figure skating, I'm going to be has a real hope in his mind that professional. I enjoy it a lot he can get a better house in the because now I'm at the stage country or something or build where I travel for competitions. his own. The MS, it'll be If I go into coaching full-time, pretty mudh the same." (Willis I'll probably .during the day do Mills, age .8). something like secretarial work. ·charlotte Brothers des- If I don't go into coaching, I cribes her.wishes for the course plan on being something like a of her father's MS and for her psichiatrist or a nurse" (Penny personal future in these terms: Chapman, age 11). "I wish that my Dad never gets Nine-year-old Jillian bad with MS. And in my synchro- Workman is younger. than Penny, nised swimming I want to be like so that her ideas about the Carolyn Waldo. I swim,almost future are a bit less realistic.· every week when ·I'm at school. None the less, she is clearly My teacher says that I probably

hopeful about the- future anµ will make it to 1 be like Carolyn still able to allow for contin- Waldo. I'm the youngest swimmer gencies. · "My Mom is getting in my level. I'm a star five." better though. You'll see. I (Charlotte Brothers, age 11). expect she'll get better. I · Children's participation in hope she gets better. I'm fund raising for medical praying that she gets better, research can be both a source of but I don't know if she will or and a sign of hopefulness. My · not. I'll live with my. Mom interviews ·revealed that many until sh~ gets better.· Then children and many par~nts long ·I'll buy a new house and I'll for a cure and see research as a get married. Cathy will probably possible a.venue to curing MS.·. In be· married and be out of the s~ite of the representation of

17 people with M~ as dependent and concrete, reflecting a global unable to have children for understanding of the world. which many organisations such as Some adults with chronic ill- the MS Society have been criti- nesses have reported increased cized in the past (1) (Black- affiliation with organised ford, 1993), participation in religions, an affiliation which fund raising for research brings they see as inspired by their hope that there is some concrete experience of disabilities way of making life better for an (Hastings, 1992)~ In this study, ill parent or for others with Penny Chapman (age 11) and her MS. eight-year-old brother, Jillian Simon Brothers .shares his Workman (age 9) and Willis Mills views on fund raising for (age 8) referred overtly to support services~ "There was a religious faith and prayer. "We time when I found out that my pray about them. We don't know Dad had it [MSJ~ ..A friend, the what's going to happen. We woman that lives across the always have to pray for them. street from her, has it. [My We just go, 'Well I hope my friend] goes over there and Mother is alright.'" (Jillian watches her. [The woman's] at . Workman, age 9) .. the point where she has to have Willis Mills admits that someone there or she 'freaks he is: "Always hoping that the out.' So we were going to get next day will bring something sponsors, make some money [for that can cure MS or somethinga this neighbour]. We thought of Everyday. Because I'm a lots of waysg We talked to Christian, eh. I have a little people. But nobody took us bible and a big one that we seriously of course, because of share. [Dad and I], we tell our age. Maybe in the future each other about stuff." (Willis when I get older, I'll raiie Mills, age 8)., some money for it." (Simon Children in this study also Brothers, age 15). described ideas for improving · In this case we see Simon the general health of the popu- concerned about a disabled lation at large. Such global woman's need for supportive considerations are spiritual in care, and willing to organise a the sense that these children sponsorship plan so that she see themselves as part of a will be able to afford such larger universe of shared res- services. Eventually children ponsibility for caring. Some are frustrated when their work dreamed researchers would find a is dismissed 'because of age.' cure for MS and for AIDS. For However, Simon expresses a· sense many children, the goal was to of hope that his fund.raising bring about universal physical interventions "in the future access. Others considered the when I get older" will improve possibility of obliterating the life of someone with MS. disability stigma. Some try to Communication with God and live peacefully with their Concern About Others Around the friends while others wish for an World end to all war. Finally, these children Some volunteered thoughtful describe hope that extends suggestions about how to end beyond the individual and the smoking through health teaching

18 of family members in some cases people." (Paul St. Denis, age and through public education or 13). regulatory laws in others. As Willis Mills wishes away noted by Alain Gagnon's father, MS, but makes .contingency wishes "He was telling me again last in case MS does not disappear. -night [that smoking is bad fqr Like Penny Chapman and Sandra my health] • 11 Alain ·Jr. ·keeps Taylor, he hopes for improved himself informed about current 1 access for all disabled persons. research findings about tobacco "Well, if I had some wishes I'd use. "Cigarettes. Lung cancer., probably wish that there was no Lip cancer. Lots of people talk such thing as MS. But I also about quitting. It's not really wish that there was more the people. It's just, can't scooters because people you know quit. Once you're on it, you're get tired and they need some way stuck there." (Alain Gagnon Jr., to get around. So use a age 11) .. scooter, don't get tuckered out. Penny and Tom Chapman see I wish that everyone feels social action to create acces- better." (Willis Mills, age 8). sible transportation as a form Willis Mills also hopes to of social justice for their eradicate air pollution which is father, and for many other emitted from a nearby industrial disabled people. "We have the smoke stack. His concern is handi-transit now. They used to largely based on his own smoke never come down our way. The ' ·allergies, although he is also wheel trans wouldn't come this concerned with plant life and far. I thought that was really the environment in general. unfair. There's a lot of people Willis explains his position I know in wheelchairs and there with a flair for metaphor and are others that have MS. So I drama. "I wish that big know it wasn't fair.". (Penny national.cigarette over there Chapman, age 11). would stop. It's driving me Sandra Taylor (age 14) nuts. I'm talking about the knows about the difficulty her smoke stack - the giant mother experiences when she is cigarette. It's smoking. I on the street with her scooter. wish that was goneo I wish Sandra's hopes for the future there was a cigarette that you include a physically accessible could smoke that made you world where the curbs would be actually healthier. You should altered for wheelchair access. see it over there. I'm sur- Paul st. Denis donates time prised those trees can even grow to MS Society projects. He down here. You see the smog envisions a cure for MS and life here. Sometimes y.ou can barely threatening diseases. ·11 I see through it. It's often that woµldn't mind someone finding a I have to hold my breath because cure for MS. A cure for all I'm allergic to smoke, even diseases you could die from, cigarette smoke." (Willis Mills, like AIDS or cancer, but also age 8). MS. I would hope that every- Finally, Willis tries to thing goes through. No transform social peer relations problems. I went to the at school into the more harmo- hospital where there was a nious world he believes should Christmas Party for the MS exist .. "I don't like people

19 fighting. I ·only fight if-the wheelchair alone. Leave the kid is on top of me and I can't walker. '· Because my Dad . thinks move an inch. There's [a.parti- it' s all a big joke. Right! · My cular student] that's always Mom .•• if she ever tried to walk picking on me. He hasn't suc- around the whole basement with- ceeded. I usually out run him. out her walker or wheelchair or I told on him a few times. He cane, she would fall. She would grabbed·onto my shirt•. I either hurt herself. You should always drag him with·me to the teacher know things about MS." (Jillian or I shake him off." (Willis Workman, age 9) Mills, age 8). Thus, children become we·see here children-think- familiar with their par~nt'· s ing beyond their own needs, with conditions. Spirituality.-has concern for others in terms of also. been associated with . curing major illnesses, creating searching for clu~s that confirm universal physical access, the feasibility of hope and with reducing.pollution and appreciating even the smallest practicing peaceful coexistence. positive experiences (Wright & Shontz; 1968; Miller, 1992). Familiarity with a Parent's Some children in this study Disability as a Source of Hope learned to identify indicators· and Spirituality of incremental improvement, even Given the uncertainty, when that change was minimal. increased chores, stigma, and For example, Penny Chapman reduced income often associated justified her hopeful attitude with parental multiple about her father's physical sclerosis, children in this condition, based on his extended study have reason. to b~ dispi- time tolerating a wheelchair. rited and to feel vulnerable. "He's been better in the last How then can we explain evidence few years. Like, being able to of such personal strength do more things. He can stay in indicators as hopefulness and the wheelchair a lot longer. He spirituality·in children with used to be able to stay in it parental disability? Based on for·about two hours. Then he this small number of. interviews, started getting really tired and. one basis for children's · sore. [Recently] when we were spiritual development appears to watching the ·baseball game, ·he be an intimate understanding.of stayed i'n his wheelchair four multiple sclerosis, acquired and a- half hours." (Penny_ through a disabled parent's Chapman, age 11). proximity and disclosure. The hope Penny displays is Jillian Workman provides this for small increments in physical. lesson. "You have to know condition,· but improvements none. someone who has MS. My Mom is the less. The focus of her hope always telling me, 'Nobody knows demonstrates her knowledge about what it's like unless yoµ have the disease, based_upon her i.t or unless they know someone. '·. lived experience in observing You can talk big of it. You can her father's illness. say 'Well, it's nothing.' My Dad [who·doesn't live with us] Conclusions always says to my Mother, 'You Experiences in livingwith can walk around. Leave the MS and qcknowledging disability

20 appear to form the basis on 8-22. which hope emerges. Penny and Antonovsky, A. -( 1987) ., the other children described in Unravelling the Mystery of this paper also verbalize a Health: How People Manage clear sense of themselves in Stress and Stay Welle S~n relationship to their parents Francisco: Jessey Bass. and to others in a larger, bene- Beanlands, H. (1987)0 The ficent world in which they can Experience of Being a Child in a make some positive difference. Family Where one Parent is on Home Dialysis. Master's Thesis, University of Toronto, Toronto, Acknowledgements: I am grateful Ontario. to my dissertation committee, Blackford, K.A. (1993). Dr. Gordon Darroch, Dr. · Feminizing the MS Society of Francoise Boudreau, Dr. Livey Canada, Canadian Woman studies, Visano, and Dr. Penni. Stewart, 13(4), 123-127. . all -of the York University Blackford, K.A. (1990). A Graduate Department of different parent, Health Sociology, North York Ontario. Sharing, Summer, 20-25. Research reported here was Hastings, D. (1992). fµnded by the Ontario Ministry Adjustment, coping resou·rces, of Health through a Research and' care of the patient with Personnel Development Programme multiple sclerosis, pp. 222-255, Fellowship. Findings and con- in: Miller, J. F. (Ed.) Coping clusions are the sole responsi- with Chronic Illness, 2nd bility of the author. Edition, Philadelphia: F.A. Davis. · Notes Jourard, S. (1970)c Living (1) The MS Society's and dying: Suicide an emphasis historically on invitation to die, American research and its solicitation of Journal of Nursing, 70, 269-275e children to take part in the Miller, J. F. (Ed.) Coping Read-A-Thon Program is not with Chronic Illness, 2nd without a potential dark side Edition, Philadelphia: FmAe (Blackford, 1993). After 50 Davis. years of neurological research Nabigon, H. (1994). Native funded by the MS Society, no Healing. Paper presented in the cure exists, so that research Seminar Series o~ Mental Health funds could be framed as a means Nursing, School of Nursing, to support the employment of Laurentian University, Sudbury, research physicians, or a Ontario, Canada .. commodification of children. Wendell, s. (1993). Certainly, these funds are not Feminism, disability and ear marked for supportive transcendence of the body, programs for the children who Canadian Woman studies, 13(4), raise the funds. 116-122. Wright, B. & Shontz, F. References (1968). Process and tasks in Arnaud, s. (1959). Some hoping. Rehabilitation psychological characteristics of Literature, 29, 322-33le children of multiple sclerotics, Psychosomatic Medicine, 21(1),

21 Perspectives interested in what you have found, unless you show that this Imagining a History that area is rich to be explored. In Illuminates Disability and the case of cross-disciplinary Spirituality work - where an historian must combine two interests - the w. Andrew Achenbaum challenge becomes geometrically Department of History daunting. :~ University of Michigan such is the case in imagining what a history that ·The very best works of conjoins disability and spiri- history are works created tuality might be. In preparing through imagination. Sometimes this commentary, I did what an author's imagination seems historians in the computer age inspired: the writings of First are wont to do: I checked all Isaiah and the Gospel according of the data bases in the Univer- to John are representation of sity of Michigan catalog. I this category. In other works found no work, in. English ~t one can see the vision of a least, that seemed to fit the master historian: Henry Adams' bill. From my own research _into account of the early American the history of aging, I had some republic, for instance, is ideas about what I might find. poetic in its use of irony and I remembered that Carole Haber statistics. For the most part, had stressed Cotton Mather's however, historians get in touch disabilities in his later years with their creative imaginations - afflictions that kindled even by grappling with.those_ works greater faithfulness to God's that seem to embody conventional will~ Not that spirituality wisdom. Revisionism animates necessarily increases with age. imaginative analyses: one cites Tom Cole suggests that G. the conclusions of one's elders Stanley Hall wrote Senescence so as to destroy the argument because of a spiritual crisis. and replace it with a new thesis These two examples were useful, - for some other untenured but they merely seemed to be person to attack and revise. suggestive. This strategy, of course, Perhaps the way to proceed presupposes that there is a was to scan the scholarly masterpiece to attack, a major literature under· each major historian whose findings no heading. If we confine our- longer satisfactorily explain selves to historical works, the ·what we want to know. It is yield is disappointingly smalls easy to make one's reputation Most histories of disability writing a revisionist history of take an institutional approach - the U.S. civil war because there they describe the care of the is always some new "spin" that blind, handicapped, or mentally necessitates a reworking of ill, or they trace the evolution famil.iar evidence, a challenging of federal, state, and local of ideas that seem now irrele- provisions for the needy.· They vant. Blazing new ground, rarely let the disabled speak paradoxically, tends to be a for themselves. As a result, we less fruitful way to make a rarely hear our subjects voice name: other scholars are not their spiritual yearnings or

22 anguish. conversely, studies of disabiliti~s that beset others. spirituality, iri the fragmented At the other direction, I way that historians try to would recommend that people div,ide their turf,Jtypically probe Scripture, not just the fall into the categories of ~he accounts of blind people and history of.religion or~ alterna- lepers, but in particular the tively, into cultural history. ways that members of the early In this instance scholars would Jesus· movem_ent empowered the read a lot·-of theological disabled to join their fledgling treatises by men and women who faith community. (For this, the may have been di.sabled in some Book of Acts and the P~uline way or another. But that fact epistles would be useful.) I ·of disability would be so then would focus· on latter-day recessive as to be. useless for groups, such as the Shakers, our present purposes. So what whose dwindling numbers in the are we to do? twentieth century made it ~ery A sensible tack·would be·to important to rely- on everybody's focus on either a patently capacity to make some sort of 11 disability11 case study where contribution. the "spiritual dimension" could It is quite possible, how- be teased out or to start with a ever, that the first study of spiritual dimension and then the relationship between focus on those historical actors spirituality and _disability in who were disabled. Let us past times will be prompted by'a consider each in turn. frantic call to an historian to .Although biographies are provide some sort of historical not fashionable these days among perspective to a very contempo- professional historians, I would rary issue such as the fate of select a well-known figure ,who aging nuns or monks in was creative\during a long, cloistered communities. Should productive career. · Ideally, my that happen, then we can count subject would become disabled· on the historians to try to sometime during the·second half ground the "problem" into a of his or her career and that particular set of historical person would have left letters, circumstances. -To the extent essays, or other commentaries in that a broader story emerges --out which the ways in which their of the fact, we will be well·on disability nurtured and·thwarted the way to imagining a new .form their creativity, especially in of historical inquiry. ruminating on their place in the larger universe and in relation- ship to the Ultimate Reality, would be made manifest. Disability, Spirituality, and Possible subjects are May Sarton Religion:· An Anthropological and Henry Wadsworth Longfellow~ Perspective So is an author familiar to ·readers of this ·Quarterly: · Nora Ellen Groce, Yale School of Arthur Frank, who manages to Public Health • refer to the sacred and the profane in his allusions to The question of .disability, Scripture and his accounts of spirituality, and religion from his own illness~s and·the an anthropological perspective,

23 is an intriguing one·. It is religi6ns seem to provide some also one that has received explanation for why certain almost no attention in the people (and not others) are born anthropological literature. with or acquire a disabling Let me begin with a sweep- condition be it through reincar- ing generalization~ In the nation, violation of taboos, broadest sense, ·anthropologists God's will, etc.; b) all reli- seek to answer ·two basic ques- gions studied.to this point seem . .. tions: what is universal to all to have specific roles that peoples and what are the individuals with a disability particular/unique adaptations may or must play, both within that distinguish one culture· the religion and within .the from another. These ,two ques-. society as beggars or objects of tions are in fact linked. charity, holy people or sources Anthropologists spend a good of inspiration, etc. Often deal of time examining unique or these categories are rather discrete cultural adaptations, confused. For example, in. with the hope of establishing Western Christian historical universal patterns. Specific thought, children and adults cultural adaptations are seen as with a disability·often are manifestations of more universai thought on the one hand to.be human beha,vior. For example, cursed by God and on the other· marriage patterns among groups to be particularly pure and X, Y, ·or Z may be very different holy. c) Finally, all religions from those of their neighboring· are tied.closely with a larger ethnic or tribal groups, but .. social order and so .in a very they are in fact reflections of reat sense r~ligioug beliefs.and all societies 1 ·need to establish practices toward disability seem a culturally recognized family to have serious ramifications in that will provide a social.and the broader community. economic support for itsmembers The second question asks if and children for the next there is a link between the generation. 0 nature of society, religion, and Given this perspective, I the expectations of both society would initiate. a discussion and religion towards individuals· about disability, spirituality, who have a disabling condition. and religion by turning to The -question is already existing ethnographic sources partially answered· in the· with two major questions. anthropological literature. First,· do all religions Certain types df organized address issues of disability religions tend to appear in either specifically in their concurrence with certain types teachings-or by implication in of social organizations. (A their practice and/or outreach? religion may spread·far beypnd If so, are there some themes its point of origin, of course.) that appear to be present· in all However, we know that specific cultures? In fact, based on types of religions are tied to what is already available in the,. broader social patterns. For literature, I would note, that example, small scale, tribal among the universal issues that religions tend to be poly- seem to revolve around disabi~ theistic · ( a belief in a number lity are the following: a) all of deities) arid tend to arise in

24 small-scale egalitarian explanatory models or as societies where there are few articles of faith and the "roles" to fulfill. Monotheism individual? What role does this is a highly centralized form of play cross-culturally in the religious belief which usually lives of some individuals with arises in more complex, hier- disability? How do individuals archial societies. In such with a disability reconcile centralized societies, the role often harsh religious attitudes of the individual in regard to toward disability with their own· the state will be significantly spiritual needs? different from that in smaller Where would one go to scale societies. Centralized further investigate such ideas? societies such as kingdoms, The current ethnographic litera- empires, and more recently ture would be a start and there de~ocracies also tend to hav~ is a good deal writteri on the much larger populations with major religious traditions, individual filling already although actual practice toward defined roles and responsible to individuals with a disability the state for participation as will almost surely be different citizens, the payment of taxes from the religious idealse How- and often military service. In ever, I suspect, real progress small scale societies persons in this area will only begin with a physical, psychological, when actual field work is or intellectual impairment would pursued or, put another way, be more likely to be viewed as when anthropologist begin to ask individuals and be accorded a individuals with a disability in full and meaningful place in the cultures around the world to community. Conversely, larger, reflect on their own experiences more complex societies with and share their own insights on their divisions of labor and these subjectse . more narrowly defined role responsibilities are more likely ~o consider persons with disbi- Religion, Spirituality and lities as being ineligible for Disability: A Health Services certain roles and thus more Research Agenda subject to the label of "social burden" and thus relegated to Robert Enteen, PhcDo, Director, life as a beggar or as a Health Research & Policy recipient of charity. ~rograms, National Multiple Finally, the link between Sclerosis Society disability and spirituality and religion can also be looked at Data from many studies on a more personal level. There indicate that the great majority has never been a culture of Americans, including Ameri- reported ·in the anthropological cans with disabilities, believe literature that did not have a in a god or spiritual beingo religious tradition. Indeed, Yet the impact of religion and there has never been one spirituality in the lives of reported that does not have a people with disabilities and complex religious tradition. their family members has been What is the link between insufficiently investigated. religious beliefs either as Research in this field has

25 been based primarily on anec- bibliography. dotal reports and qualitative With all due immodestly, I analyses, with little quantifi- offer the fo~lowing personal cation and comparative study. list of proposed questions for Moreover, the focus of most researph as a complement to the research to date assumes a foregoing: .strictly beneficial effect: - (1) How, if at all, do that religious/spiritual beliefs people who identify themselves and values are assistive in as holding "religious" or coping with thE "adversities" of "spiritual" beliefs differ from physical and mental disabi- those who do not in their lities. While such studies and psychological and social assumptions can be ·useful, they reactions to the onset of· are not definitive. · disability ·in themselves or in Perhaps the most methodolo- their family members? gically rigorous investigations Similarly, in their long-term having at least an indirect response to .the disability and bearing on the question of its consequences? religion and spirituality and (2) ·How do disability are those .,that have religious/spiritual beliefs been undertaken in the field of infl.uence one's intellectual psychosomatic medicine. At some response, i.e~, the explanation distance from the psychosomatic one. offers to oneself and others literature is the superabundant for the·occurrence of lay "self-help" literature, disability? (3) Do people rep!ete with books such as When from various religions differ in Bad Things Happen to Good People regard to the foregoing? In (Harold Kushner), The Road Less what ways? How can these Traveled (M. Scott Peck),. and differences be explained?· How Love, Medicine & Miracles might aspects of their (Bernie Siegel). respective religions belief A recent national con- systems and rituals account for 'ference may s.ignal a move toward identified differences? more and better studies on · (4) How, if at all, do religion/spirituality and religibus/spiritual differences disability. on May 1-3, 1995, translate into objective the National Center for Medical differences in clinical Rehabilitation Research convened outcomes? a meeting in Bethesda, Maryland, (5) What ~oles do religious on "Roles of Religiousness and institutions and "communities"- Spirituality in Medical Rehabi- of co-religionists play in one's litation and the Lives of formal and informal support Persons with Disabilities." A systems?· worthwhile background paper (6) What formal disability distributed to conference related servtces do religious participants (Lynn Underwood organizations provide? Gordon, "Role of Religiousness (7) What are the negative and Spirituality Among P~rsons effects, if any, of religious with Disability: Applications and spiritual beliefs? For to.Daily Living") offers a example, do some religions conceptual model, an overview of promote stigmatization of the literature, and a individuals with physical or

26 mental disabilities? Or do they postponing treatmen~? On universally serve.to ameliorate finding qualified·assistance? / stigma? On becoming accurate!¥ informed (8) What happens to"\ about one's disability? p~ople's religious/spiritrial (15) How do religious and beliefs and practices following spiritual beliefs promote or onset of disability? For impede functionality, self- example, do some people withdraw sufficiendy, one's sense of in anger and disenchantment from ·"suffering," one's optimism and their prior religion affilia- related efforts to maintain.or tions? Do others "become" improve one's condition? religious?. Why? (l6) What,-if any, are the (9) What role do religions objective benefits of prayer? play·in promoting or deflecting Do these differ from those ·of people from traditional· (i.e., the "placebo·effect?" generally accep~ed medical Finally, most importantly, model) providers and treatments? · I propose that more sophisti~ With what implications,. for cated and quantitative research better and/or worse? des·igns, and more adegu·ate · (10) What formal role do resources, be applied to study- religious organizations play ing these and related questitins. witnin the health system? For example, do religious hospitals and nursing homes address special needs or particular Disability Studies Among the\ segments of the.disability Asian Religions and Philosophies community? · · ( 11) What practical effects M. Miles~ 4 Princethorpe Road, do providers' religious beliefs Birmingham B29 5PX, England have on their practice patterns? With what impliciation- for the , Disabilities have .been people they serve? known and recorded in the ( 12) What problems, if any,· civilizations of South Asia and have religious/~piritual insti- China for some 4,000 years. tutions and communities created Although much disability for people with disabilities. material exists in the reli- For,.. example, how have .people gious, legal, medical, educa- with disabilities been portrayed tional, and traveler literature in religious writings and visual of the regi-on, studies published arts? With what effect? in European languages have been (13) What changes·, if any, few. Nonetheless, hopeful signs are ~ccurring in the are appe~ring. In recent relationship between dec~des inter-religious studies religion/spirituality and have emerged, along with Asian disability? Why are these· cultural studi~s and adademic changes occurring? exchanges. Disability has (14) What effects do achieved academic standing as a religious beliefs have on ·one's topic~ As more scholars seek ·response to health practices ·and promising fields to explore, the providers? For example, on interface of Asian religions and compliance behaviors,- such as philosophi~s with disability may taking medications? on prove attractive. The present

27 review sketches some needs, Gandhari to blindfold her own interests, and issues of the eyes (3). This might not appeal field and mentions some work to feminists now, but in the tha.t ha.s been undertaken • times of the·great Indian epic First, some hors d'oeuvres: Mahabharata (Adi Parva, Sect. existing translations provide CX) it won great respect and important glimpses .of Asian continues to inspire.modern disability history. For Indians. example, in one of the Buddha's Disability in Asian incarnations, as a baby prince, religions is much more than a he was horrified by.the judicial fascinating.academic pursuit. severity of the king. The babe· As disability is targeted· could not countenance unethical globally ·for prevention and behaviour, so he resolved to remediation (or alternative, as remain deaf, dumb, and motion- disabling social st·ructure are less. As he grew, courtiers unmasked and deno~nced) change tried an audiological test. agents find themselves in con- They cut spy-holes in the· flict with traditional beliefs curtainsI • around the prince's• bed . and concepts which too often are and while someone suddenly blew seen as purely negati.v·e. . a conch, they checked to see Clearly, religious beliefs are a _whether the child was startled. major factor in shaping thoughts Later, the·courtiers tried norm- and.attitudes among the bulk of. referenced tests tempting him the South Asian population._ Yet successively with milk, fruit, in the literature of community- toys, or animals according to based rehabilitation - a the different ages at which they favoured development strategy of said a child usually reacts to the 1980s - one finds dismissive such stimuli. Whatever;one may comments about the attitudes of think of reincarnation and the target populations toward historicity of such tales, the disabled people which are.said disability assessments ideas to be based on "false"·beliefs,. were clearly recorded over 2,000 e.g., that disability is a years ago in Muga-Pakkha Jataka puni'shment for sins either in Bk. XXII, No. 538 (1). the ·present or past life. It.is The Analects of Confucius then usually suggested that (2) .are normally .read for their these "false" beliefs should- be influence on Chinese cultural replaced by the facts, i.e., philosophies rather than for modern "correct" beliefs. · etiquette with blind visitors. Few western-educated people When blind music-master Mien· now believe that disabilities came to visit, Confucius are punishments from unseen intimated where the steps were forces such as ancestors to and guided him·to the sitting whose spirits one has been dis- mat. When all were seated, he respectful; yet it seems a told Mien.who was present ard little arrogant to dismiss where they were placed. ·Someone religious and traditional asked later if this were .a beliefs without making efforts recognized procedure and was to understand just what is informed that it was (Book XV, believed, how,it fits into the 41). Politeness to her blind believers' general world view, bridegroom caused the princess whether beliefs are undergoing

28 changes, and how far·they might priate and ·inappropriate social be held concurrently with the. reactions to persons with belief-pictures of medical disabilities. For example,.a science·. The defective gene recent introductory study (4) theory of some disabilities lists items from the historical remains largely a belief in treatment of disability in con- unseen forces unless one credits texts of Hinduism, Buddhism, and the interpretation placed on the Isiam which-might be viewed as pattern of dots seen under a positive by' "right-thinking microscope by people in white westerners" as well as eleme·nts coats-. The white-coat theory, that would·be negative ·or diffi- in which ancestors send harmful cult to many westerners and some material to a random but statis_. easterners~ Yet such lists tically calculable proportion of merely whet the appetite•. They their descendants, is obvious are not the "the teaching -of nonsense judged by the belief Buddhism or Hinduism about systems of a large part.of disability." Great temerity is humanity. · The "reason" offe:ted· required even· for a learned by the white-coats looks more person within one religion to like fatalism, i.e., it lacks describe its current interface any reasonable explanation of with disabilities let ilone tor cause and effect that could be an outsider to try. Neverthe- influenced by one's conduct, less, some work is 1 under way present or past; whereas; to the toward .form~lating accounts of white-coats, it is the "primi- what disability has meant and tive" beliefs which appears·' may now mean within the Asian fatalistic. There is room for religions. much more study of·the practical Several European g+oups are effects ·of such co.nflicting taking an interest. In Germany, causation beliefs. _ the Arbeitsgemeinschaft The Asian religions and Behinderung und Dritte Welt philosophies appea;r to teach a (Disability and the Third World measure of dispassion toward which is coordinated by Jor- suffering or disability with danian Musa Al Munaizel) has disabling conditions presented begun a series of articles on in some respects as. having disability and religion in its little or no ultimate signifi- newsletter (5) and.has a group cance. Within religious world · specialising in the Islamic views that have continuing world~ Since 1991 Ken Parry at. relevance for 3 to 4 billion Manchester (6) has run a regular people, one may even welcome a seminar on religion and disabi- measure of disfigurement and lity with· a variety .of speakers. dependency to counter the In the Netherlands ·members of delusions of youth, beauty, and two allied groups, Foundation independence·. At the same time, Comparative Research and the it would be a mistake to view study Group on Transcultural the religious traditions of Rehabilitation Medicine, sup- Buddhism; Hinduism, Islam, and ported production of C.F. the Chinese philosophies.as Vreede's Guide to AOL (7.) and containing clearly demarcated Arthur Vreede's bibliography on messages about the nature of traditional disability concepts, disabilities including appro-. attitudes, and practices (8). 29 The AOL guide concerns. experlences (14). The World rehabilitation 11 as though Council of Churches. disability people's beliefs mattered" contact post, now held by Korean informed by long experience in theologian Ye Ja Lee, is open to Indonesia and studies in Indian dialqgue with other faiths .( 15). religion and philosophy. Some isolated studies have Another study Group member, appeared that are useful, but Deliane Burck, prod,uced a model which may not be part.of an .. study of beliefs and practices ongoing disability-related work. in the context of an African For example, Ariel Glucklich community-based rehabilitation made a scholarly repo.rt on project (9). disability provisions in the Further organisations Dharmasastra1 (16). Tunisian probably exist with relevant Kamal Tarzi wrote thoughtfully studies in progress. Work on on mental handicap in Islam non-western culture and disabi- (17). Hyun Younghak linked the lity, with pertinence to experience of crippled Korean religious belief, by Nora Groce, b•ggats with a.theology of Laura Krefting, Sylvia Walker, sufferi_ng ( 18) • Akiie Ninomiya and their various colleagues discussed historical and will already be familiar to DSQ. ·religious attitudes toward readers. Publications of the disabled people in Japan (19). International Exchange of Subodh Chandra Roy's thesis (20) Experts and Informati,on in recorded .the historical treat- Rehabilitation have added ment of blind Indians. He noted usefully to the literature. (10). a distinct set-back as the Vedic Benedict Ingstad and Susan ·period gave way to the Upani- Reynolds Whyte recently edited a shadic, when an emphasis on fascinating collection covering transcendental values led to a disability beliefs in a wide wi.thdrawal from social· interests variety of cultural contexts and activities, to the detriment (11). A forthcoming .tome edited· of blind people (pp. 260-61). by Gary Woodill will include China studies are develop- some considerations of religion ing rapidly, but few authors and disability (12). on'a dif- have described the beliefs or ferent plane, a few religious cultural philosophy underlying networks such as.that of L'Arche disability activities. Brief International· conduct daily contributions have come from practical studies of living Gustafsson (21), a perceptive togetner in community with. visitor (pp. 198-203); and from severely disabled people. Some Dai-Hua Shen (22) who discusses of the.Indian L'Arche communi- cultural values in disability ties involve people of three or service (pp. ·~43-46). The more faiths who find that philosopher Qiu Renzong (23, 24) L'Arche's "house rules" (the discusses ethical issues in the Beatitudes of. Jesus) are accept- disability field. Some of his able to their religious tradi- conclusions would be unpalatable tions -( 13 ) • A network of Baha'i to many westerners because adherents has been active over Renzong writes .what he thinks some years in developing Third rather.than trying to please World disabili~y services with westerners. Others from some informal recording of developing countries are often 30, I \

defensive in the face of western 8. A. Vreede (in progress) cultural d·omination presenting Bibliography. Traditional onlyra sanitized version of Concepts, Attitudes and their.religion and culture and Practices Regarding Disability. reinforcing the barriers between Comparative Research, PO Box the small "modern" sector of 163, 1260 AD Blaricum, their country and the masses who Netherlands. actually practice the religion. 9. D.J. Burck (1989) Kuoma This lightening sketch must Rupandi (The Parts Are Dry). conclude with apologies·to Research Report No. 36/1989. authors whose valuable work may Leiden: African·studies·centre. inadvertently have been omitted 10. See e.g. B.L. Mallory, and to scholars and believers · R.W. Nichols, J.I. Charlton & K. who feel that great profundities· Marfo (1.993). Traditional and have lightly been skated ov~r~ Changin~ Views of Disability in There is indeed a cha1lenging, Developing Societies. Durham NH: muJti~faceted, and richly University of New Hampshire. rewarding field of human 11. B. Ingstad & S.R. Whyte experience here awaiting study. (eds) (1995) Disability and Culture. Berkeley: University of California Press. References and Notes 12~ G. Woodill (ed) (expected 1995) History of 1. The Jataka transl. Disabilities: International various, ed. E.B. Cowell (1895- Perspectives. New York: Garland. 1907), reprinted 1993. Delhi: 13~ See e.g. chapters by Co Low Price Publications. Sadler and G. Einsle in the 2. Confucianism: The Challenge of L'Arche (1982). Analects of Confucius.transl. A. ·London: Darton, Longman & Toddo Waley, ed. J. Pelikan, 1992. New 14. Kathy Villiers-Stuart ·Yor~: Quality Paperback Book provided a typescript "Some ·c1ub. Notes on the Baha'i Attitude to 3. The Mahabharata transl. Disability" during the· 198Qs. K.M. Ganguli (1883-1896), · Brian O'Toole, a well-known CBR reprinted 1993. New Delhi: researcher and practitioner in Munshiram Manoharlal.· Guyana, uses Baha'i references 4. M. Miles (1995) in some of his published'work. Disability in an Eastern 15. wee Programme Unit 1 - religious context: historical Unity & Renewal, PO Box 2100, perspectives. Disability & 1211 Geneva 2. Society 10:49-69. 16~-Ao Glucklich (1984) 5. Rundbrief Behinderung iaws for the sick and handi- und Dritte Welt, c/o ·capped in the Dharmastra. South , LebenShilfe, Postfach 701163, Asia Research 4:139-152. _35020 Marburg, Germany. 17. K. Tarzi (1978) Vers un 6. K. Parry, Department of panouissement personnel~ In Pro- Religions \and Theology, Victoria ceedings of the 7th World University of Manchester, Congress of the ILSMH·on Mental Manchester M13 9PL, England. Handicap. October 1-6, 1978. 7. C.F. Vreede (1993) A Vienna, Austria, Vol. 2, 63-78. Guide to ADL (the activities of 18. H. Younghak (1985) The daily living). Delft: Eburon. cripple's dan·ce and Minjung 31 \

theology. Ching Fen 23:30-35. biblical studies, systematic, 19. A.H. Ninomiya (1986) historical and practical Japanese attitudes towards theology, especially pastoral disabled people - religious care, liturgy,. and preaching? aspect. Japanese Christian Why, in 1995 and several years Quarterly 52:202-206. post-ADA, are we just beginning 20. S.C. Roy (1960) Culture to work on these issues? Worse, contact as a dynamic of social why has the Church resisted change. A study of the treatment doing this work, and why does it of the blind in India. Ph.D. continue to do so? For many of thesis, School of·Education, New the years of my work.on disabi- York University. . lity issues and their relation- 21 •.L.H. Gustafsson (1982) ship to the Church, I saw the Child health care in China. In list of problems becoming more R. Liljestrom et al~ Young extensive and the issues getting Children in China, transl. T. more complex. But just as the Skutnabb-Kangas & R. PhilLipson. seemingly chaotic pieces of a Clevendpn, England: Multilingual kaleidoscope suddenly fall into Matters. a pattern, so too did these 22. Dai-Hua Shen (1993) issues become organized into Special education in cross- three major categories, each cultural perspective: P~ople's with a different protagonist. Republic of China. Ins. Peters They are: personal, theological, .(ed) Education and Disability .in and institutional • Cross-Cultural Perspective. New I have used a wheelchair York: Garland.· for 18 years and so will use 23. Q. Renzong (1985) Low myself as a .case in point•. What birth weight .and the one-child does it mean to the average family in China. In z. Bankowski. person to encounter me? What- & J.H. Bryant (eds) Health ever else it may mean, it is to Policy, Ethics, and Human be reminded of his/her own Values. Geneva: council for vulnerability and the vulner- International Organisations of ability of those. whom they love. Medical Sciences. To be reminded, at however deep 24. Q. Renzong (1993) What a level, that they ·and theirs has bioethics to offer the. are but a·traffic accident, a developing countries. Bioethics .fall, a dive into a too-shallow 7:108-125. pool, away from being - in their language - a cripple, or, worse yet, a "helpless cripple." To Midsection: Issues be reminded that even in their sleep in the safety of their homes, a sinister disease can The Church and Disability: A creep in and begin chewing away Trinity of Issues at nerve and muscle tissue, undetected .until it is too late. Helen R. Betenbaugh, Dallas, TX They see me as loss, as options no longer available, as life's Why has the Church hopes and dreams aborted. Life neglected to do its homework in as existing, not flourishing. the area of disability and And ultimately, as a harbinger chronic illness with respect to of their own final vulner- 32 ability, death. are frightening, even terrifying It is at this point that questions which to~ally upset the lines blur between the our equilibrium; it is no wonder personal and the theological that we shun them. issues because there is still The second series of issues present in the kind of thinking is centered on theological described above more than a questions about the identity and trace of that old "stuff" of the the purposes·of God. In shdrt, Scriptures, the pre-scientific we are faced with another form world of a three-tiered universe of the theodicy problem: God is (God and heaven above, earth in all-loving, God is all-knowing the middle, and waters/the and all powerful, yet evil, deep/hell below). It is a world disease, and disability exist in which knows nothing of germ the world. An all-loving God theories of disease, of would not want to see God's genetics, ·of birth people ill or injured. An all abnormalities. Everything that loving God would never punish happened was caused by God. God's people with something so Those who bore the disfigurement terrible, would God? An all- or deformity of birth defects or~ powerful God would stop the the results of later ·disease or accident from happening, mini- injury are seen to bear a mize the injuries, or send a stigma, a sign of God's miracle to effect a cure. And punishment and rejection. These if our God is not all-loving and are a sign of estrangement from all-powerful, then what kind of the Holy One and those who bore a God do we have? Or what are it are marked as Other, not as we to understand about God 1 s Holy Other, of or pertaining to love, God's might? Are not the the Divine, but as the opposite very hairs on our heads numbered end of the spectrum, shunned, and known and valued by God? unholy; untouchable Other. Even How could that loving protection as sophisticated as we claim to permit my need of a wheelchair be today, there is a great deal or my·constant pain? of that ancient world which The last group of issues effects even the most logical of involves the institutional use Germ theories and accidents Church and the fact that we live notwithstanding, God is seen to in a consumer-oriented society have caused - or- refused to where marketing is of prime prohibit - the disease or 'import. The Church acts out of accident. This has to be my a mind set which s'ays that fault and I n·eed to confess, laity, especially the un- repent, and/or open myself to churched, want the best value God's reconciling, healing for their investment, whether it power. But then the able-bodied be of dollars, time, or eriergy. person is forced to examine his For the Church and its or her own life,. which means a evangelism efforts, it would recognition of their own sins then stand to·reason that and shortcomings and a persons with disabilities pose 1 a simultaneous awareness of hpw probleme How could the Church vulnerable they therefore are ask a person to be baptized, be before this fearsome Divinity faithful in attendance at who can disable at will. These worship, see that their children

33 are in Sunday School each week, disable itself .. bring something tasty to share (Helen R. Betenbaugh is an for potluck suppers, pledge or honors graduate of Perkins tithe, and, oh yes, your School of Theol'ogy, Southern "reward" might be to end up like Methodist University, Dallas, this woman. No, the Church where she is currently a needs Beautiful People in order candidate for the Doctor of to promote itself in a marketing Ministry degree. Following a economy. lengthy career as a church Is there Good News in all musician, she is currently a of this? You bet! And it's Candidate for Holy Orders in the from the People of God them- Episcopal Church, Diocese of selves. Somehow, despite all Dallas. A frequent speaker and the categories of issues just workshop leader, she has used a. named, many people know better. wheelchair for 18 years. Her In my experience, again and writings on disability and again, I have seen confirmed the theology appear in a variety of laity's understanding of.the publications.) integrity and .authenticity of the paradoxical symbols which I embody: Good Friday and Easter. Conference on Spirituality ·and Most people are self-aware Disability Held by NIH enough and wise enough to know that their lives are lived more Margaret A. Nosek, Ph.D., Center in Good Fridays - or in the for Research on Women with dread of the.next Good Friday Disability, Baylor College of they will have to endure - than Medicine, Houston they are in Easter. Many have had only an occasional glimpse The last taboo in rehabi- of Easter. Even the most for- litation is finally coming down. tunate look over their shoulder Whereas sexuality is now an or listen for the shoe to drop acceptable, if not comfortable, which tells them that the noon- topic in rehabilitation circles day sky is about to darken. and substance abuse among people Thus, for them, my Good Friday with disabilities is finally embodiment and Easter life and being addressed, we can turn our. faith ring true, far beyond what attention to the spiritual part IIJoin our fellowship and only of our being. Many of us claim good things will happen to you that this is the key to our and yours" can signify. success in life and our source I pray that the Church will of strength, yet it is rarely, dare to be bold, to take the if ever, discussed. The leap ,of faith which allows it to National Center for Medical confront personal, theological, Rehabilitation Research, part of and institutional issues in such the National Institutes of a way that, together, we can all Health, together with the Fetzer be people of the Easter Faith Institute, a foundation that is regardless of our abilities and dedicated to the study of the disabilities. The Church is, relationship of the physical, after all, the Body of Christ. mental, emotional, and spiritual To lose or cut off or shun any dimensions of life, initiated a of its members is therefore to forum for this discus.sion .by·

34 f

holding an invitational little to do with the conference on "Roles of religiosity or spirituality of Religiousness and Spirituality people with disabilities. There in Medical Rehabilitation and is a sizable bodyl of literature, the Lives of Persons with though mostly of poor quality. Disabilities"·on May 2-3, 1995, (uncontrolled designs, narrowly in Bethesda, Maryland.- It was defined parameters, white male two days filled with explora- samples, etc.), related to. tion, controversy, and heated religion and geriatrics. This debate. a:tea was well repres.ented by Three perspectives were researchers at the conference represented at the conference: stemming in large part from the researchers from geriatrics or fact that the Fetzer In·stitute medical rehabilitation, and t~e National Institute ort chaplains and rabbis, and people Aging had just conducted an with disabilities who were invitational conference on.the academic researchers, clergy topic two months earlier. It members, and/or advocates. was -with no small amount of ire, Following are some highlights of however, that participants with the points of convergence and disabilities responded to controversy from this author's . notions that findings in that perspective as a rehabilitation domain are transferable to ours. researcher, woman with a One_psychiatric researcher physical disability, and stated that aging and disability advocate for di$ability rights. have in common a loss of control There is a substantial over life. This reflects a difference between spirituality serious lack of understanding and religiosity. Discussions of among traditional academic definitions surfaced early in ,researchers of disability as a the conference and everyone was context fo_r living throughout . in agreement that spirituality. . the _lifespan. . There is. a wide is related to perceptions of the range of emotional responses to transcendent, while religiosity disability that, when combined is related to the group with the ordinary demands of behaviors and social institu- physical and emotional survival t.ions that arise around those as a child, adolescent, or perceptions.. Religiosity is adult, create an enormously more easily quantifiable in complex life situatiQn. It is terms of creed, ritual; and simplistic to claim that the social behavior. It has, effect of spirituality on therefore, more often been the response to disability is subject of research than analogous to the tendency of_ spj.rituality, which by- people to become more religious detinition defies measurement. as they approach old age. There is a critical need to Similarly, studies of religious apply qualitative research coping in chronic or acute techniques to the study of illness may not be transferable spirituality and the spiritual to disability, which is (a_s. opposed to social) aspects generally a more miltidi~ of religion. . . mensional, lifelong phenomenona The religious behaviors. of Are we spiritualizing persons who are·elderly have medicine or medicalizing

35 spirituality? This question, Thornburgh of the. National Head: posed by Carolyn Vash, a· Injury Foundation and the .Rev. clinical psychologist with· a Nancy Lane, an Episcopal prtest· disability, captured the fears with cerebral palsy~ revealed of many that the medical model that church £acilities are in of disability that we have been. large part inaccessible and struggling fpr decades to attitudes of clergy and- dissolve is now invading the religious communities tend to be study of spirituality. By paternalistic and discrimi- forcing spirituality into . natory. Exemption of religious categorical units and predict- organizations under the able behaviors, we may be Americans with-Disabilities Act setting up yet another way for leaves advocates with little people to be labeled and leverage to make change. Rather stereotyped. Many of us who than being as inclusive and found resonance with trans- welcoming as many churches.claim cendental influences from-the to·be, they sometimes restrict East, prefer to strive for a participation in their modification of traditional activities by people with medical and research practices disabilities in subtle and qvert that will enable the discussiori ways. of spirituality as .a part of There is debate over life and create new mechanisms whether all rehabilitation for understanding how spiritu- clinicians should be encouraged a1ity influences the response to tci address the spiritual needs disability by the individual and of their patients or whether society. : · this should be the domain of Spirituality and disability chaplains only. There was as a topic for research is considerable heated discussion highly problematic. Discussions of the incorporation of of research met~odology revealed spiritual counseling into.the many problems that can arise in. practice of occupational and the .study of spirituality and physical therapy and nursing. disability. Even when using There was agreement that it is qualitative techniques, which beneficial for all clinicians to · are much better suited for this be sensitive to the spiritual topic, interpretations of data crises ·or needs of the people must consider the individual's they work with, but disagreement age_at onset of disability, over the degree to which cultural atti,tudes toward spiritual counseling can be disability, possibl~ effect of' appropriately delivered by an· cognitive impairment, involve- untrained individual •. Serious ment of family in the interview concerns were raised over the process, rights to privacy, and individual's right to privacy constraints placed on the and the emotional vulnerability conduct of research by rehabili- of some persons in early stages tation hospitals. of comprehens'ive rehabilitation. Religious institutions and· · There is an urgent need for actions by clergy often a better understanding of the seriously violate the rights of effect of spirituality on living people with disabilities. with disability. All the Testimonies given by Ginny persons with disabilities

36 participating. in this conference issues in this context is to experience~ a strong influence widen the future interaction of of spirituality on the way they religious studies and disability have dealt with their disabili- studies. ties. The point was reiterated Let me· begin with the words many times that.virtually necessary to the current dis- nothing is known .about the cussion: religion, religious, phenomenon. There as a strong religiosity, spirituality, call to investigate the role of theology, religious studies. spirituality and religion in the Few seatmates on airplanes make lives of people with disabili- distinctions between spiritua- ties, interventions that may lity· and religion or between help resolve spiritual crises theology and religious studies, that arise. in response to but, in the field, care~rs and disability, and the efficacy of. .reputations are often advanced spiritual services in medical or diminished in the process of rehabilitation .settings .. distinguishing one from the other. Consequently, speaking about religious studies and disability stud.ies together Disturbances -from Afield: Mind requires ·some active engagement OVer Matter Does Not.Keep Body in the vocabulary of field. To and Soul Toge~er that end let me declare my use of terms in this essay, at the Adele B. Mccollum, Ph.D., same time saying what this-essay Professor, Religious studies, is not. It is not about any Montclair State University, particular established religion Upper Montclair, NJ 07043 although I draw content from many. It does not directly My field is the Academic address practice such as dance, Study of Religions (Religious prayer, healing. (Ritual . Studies) and my interests and liturgy, piety, religiosity). I work fall into·the third of the am not writing theology which is areas delineated by Eiesland in primarily western endeavor, ' her article in this issue of the usµally linear, often . Quarterly. As she clearly systematic. Nor am I going to enunciates, the methods and explore the lives of recog- theories engaged by scholars in nizable saints with recognizable this area are drawn· from the disabilities or the spiritual humanities and social sciences. _and/or inspirational insights of However, there are some valuable· individuals (spirituality). All differences which set Religious of these have been done, are Studies apart from any one of being done, and need to continue the other humanities or social to be done. sciences. These differences have to do with method, observa- Why Religious studies? tion, theory, and interpretation I am prepared to make the and the particular ways in which claim that no discipline is more the discipline privileges some· adept -than Religious Studies at. aspects of evidence over others addressing the study of race, in the interest of insight. The class, gender, or disability. purpose of.addressing these Furthermore, I believe bene- 37 ficial understandings can be .. The third potential contri- attained from the combination of butiori is more complex and can religious studies and·disability be probed by examining the studies. At the same time a phrase, "keeping body and soul caution against academic together." This is more than a· imperialism and colonization may statement about the tensions of be in order. economic impoverishment and no Three contributions which· discipline struggles more with Religious studies might make to the detrimental effects of the study of disability come body/mind or body/soul dualisms from the internal construction than the. field of Religious of the discipline itself. These studies. But ·Religious studies methods of inquiry and presup- carries an alternate legacy as positions are more than ad hoc. well. Something, akin to what Religious studies, as now Adrienne Rich calls "thinking constituted was born postmodern through the body" (Rich, and multicultural in the 1.960s.' Adrienne, Of Woman Born: It is among the youngest of the Motherhood as Experience and academic disciplines and yet its Institution, New York: W.W. heritage is· among the most Norton, 1976~ passim) has ancie.nt. One notable difference longstariding currency among between Religious Studies and· religion's thinkers. Known to someirelated fields is the and.subsequently rejected by, former'-s admission of otherwise anthropologists and religionists inadmissible ·evidence. In is something called flpartici- 11 Religious. studies empirical pation 111ystique. .. This concept, · evidence includes intangible first described by Levy-Bruhl, experience, something often provides a way of experiencing inadmissible in a field which and identifying with what is adheres more closely to tradi- initially encountered as tional scientific methods. For "other." Joseph Campbell .links example, dreams, visions, or this idea inextricably to supraordinary occurrences are religion when he says: "It has often treated as valid data for been one of the chief aims of 'analytical purposes. all reiigious teaching and A second variant lies in ceremonial, •••to suppress as theories of interpretation or much as possible the sense of hermeneutics. Interpretation in ego and develop that of parti- Religious studies is charac- cipation." ,Campbell is making terized by a reflexive attitude: the point of 11 indissociation" why these questions, prqblems, between subjective and objective formulations? Triangulation, or aspects of experience. the combining of quantitative (Campbell, Joseph, The Masks of and qualitative methods is often God: Primitive Mythology, New assumed and so Religious studies York: Viking Press, 1959, p.85) invarlably identifies the sum as Let me be more explic.it great than any particular about the correspondence of combination of the parts. I am "thinking through the body11 and not suggesting that Religious participation mystique. What Studies is alone in·this, but Rich is pleading for is thought only that it is integral to the rooted in bodily experience. field. What might be called thought

38 from down und·er in which neither experience myself as the play~r body nor mind is completely on the screens.· Observers cheer object or subject. She is not "as if" at an actual game. When _suggesting that thought or mind the ·shaman' ."becomes" the eagle be brought into conformity ·with god, he experiences himself as .ttle socially constructed· body, such. Those around him both but rather for a continuum of remember and forget that he is -~ subject and object which is the local shaman and the quite like Levy-Bruhl's idea of otherworld god. participation mystique. Through virtual-experience Viewing this phenomerion :as we can put to rest assertions a pri~itive or pathological such as only women can teach identification needing.to be women's studies; only people. made conscious, outgrown, or with disabilities can do disabi- cured does a disservice.to an lity studies. Why? Because the ancient talent. A West African possibility of- shared experience proverb-instructs: "I_ am because is present. I want to argu~ we are. We are because I am. I that once this concept, so am We." important to religious studies, Academic study has·· lost a is understood it de-etherizes sense of cominonality yet pur- that which is studied and makes ports to be multicultural and common experience accessibleo interdisciplinary. How in the world do we dare study diffe- Reasonable Caveats rence without first cultivating We risk tribalizing the some sense of persons as 11 we 11 ? actual· experiences/lived reali- I believe Religious Studies pro- ties of people with disabilities vides clues about how to reveal, by theorizing about disability. cultivate, and promote such The argume~t is plain: I/we have thinking and identification. suffered as a result of an Unlike Jung and other critics of ·actual situation in life, there- participation mystique I have no fore, using my life in any fear that the ego or indivi~ theoretical, non-concrete way ·dualism of western scholars will denies the pain, difficulty, be swallowedup by the "other" discrimination I have ~uffered if we cultivate this sort of in this "real life." Writers thinking. Adrienne Rich and Susan Sontag Furthermore I see :this both exper~ence.negative ancient concept renewed in the criticism for using lesbianism postmodern cyberworld as the tRich) and illness, especially notion of virtual realty. While AIDS (Sontag) as metaphors. No virtuality can be regarded as doubt these criticisms will fainth~a~ted fake, benign continue, nevertheless, the approximation, the "next best possibility exists for disabi- thing," outright deception, and lity and Religious Studies to· all increments in between, I remain grounded in or originate mean to insinuate that from.art experiential base. This virtuality provides unique is what I mean by keeping body opportunities for ~~oss cultural and soul together. - viewing. In virtual reality, virtual experience is available. Future Explorations When I play virtual basketball I · Let me suggest a few areas

39 of study which combine Religious different dangerous? Studies and disability studies and which might contribute to the pursuit of meaning in these combined fields. They are Disability from the-Point of menti6ned here simply because I View of Religion and cari imagine exploring them in Spirituality future work. The Boddhisatwa as the Jane Hurst, Ph.D., Department of Broken or Wounded healer. Philosophy and Religion, Disability as desirable;· Gallaudet University religious practices which disable: footbinding; Robert-has been working on scarification. the office computer system for a How do we learn to few months 'now. _He is there expect/desire only what we are part-time while he attends capable of? Gallaudet University. Robert is Are there "natural likeable and well-dressed, and deviants?" · very competent at what he does. People with disabilities as He is also deaf. One day his plot devices by means of which supervisor approaches him. nr the gods "show off." have been· thinking a.bout this. Why was heresy among New I 1 am a Christian. Robert, if England Puritan women determined you had more faith, ·you would be by whether or not they had given able to hear!" birth to "monster children?, Rosalie visits a church for How do we learn what is the· first time. Bedause ~he is attractive? deaf, but can do pretty ·well Purity and danger: with her hearing aids, she -sits Disability, otherness, and in the front. When the healing obscenity. service begins., she is asked to My next undertaking will come forward. Feeling focus on the last two topics, pressured, she dcies. The . founded, as I have argued, in minister prays loudly, covers experience. My three year old her ears, and asks the Lord·to grandson, Marley, was playing heal her. She is stunned, but happily with several children in wants to ~e polite. The next a room full of balls at a local week, when she visits the church play area. A little girl of· again, she leaves her hearing about the same size and age was aids off. Now Rosalie can playing along side, laughing ·and understand almost nothing, but giggling. Both children were · she qoes not want to disappoint submerged in balls. When they all the people who prayed.for came up for air the little.girl her. , had her back toward Marley and Both of these stories were they laughed and played for·some told to me by students in my time until he-reached out to capacity as a teacher of touch her. She turned, looked philosophy and religion at at him and began to shriek in Gallaudet University. My indisputable terror: "Get away! training is in the academic Get him away. He looks funny." study of religion, not as a Marley has Down's Syndrome. Is religious professional. I

40 .searched religious literature things such as having a physi- for information on disability. cally imperfect body must have a I was disappointed. Disability. religious cause. The thinking is rarely talked about in runs like this: 11 I ·have a strong religious writings and faith in God. · My body is practices, most a.ft.en in .functioning and healthy. "miracle" stories. There-fore, my strong faith must These two stories illQs- be causing my health. I see trate the general attitude of a someone who has a body that does kind of religion toward people not function well. Therefore, . with disabilities. In explain- 'this must be caused by a lack of ing this, I will focus mainly on faith, or tbe sins of the Christianity, since that is the· fathers, or bad karma. 11 majority religion here in This need to explain America, but these attitudes are everything has roots in human found throughout the religions consciousness, the need for of the world. continuity·, the need to answer .Robert and Rosalie were the question "Why?" It is -also both puzzled by their based on the fear of anything experiences'. What should they different or unknown, which have said? What is an appro- l~ads to the next theme. priate response to such intru- 2. Disabled people ar-e sive behavior? My personal feared by non-disabled people response was anger. -I was and are therefore explained away furious that a "religious" and marginalized. Fear is a person would presume to know. the powerful motivating force. When state of another person's faith. some able-bodied_people see I was angry that Rosalie was · disabled people, it scare$ them. pressured into a prayer service Somewhere they say to them- that she really was not selve-, "This could be me! I .interested in. Frankly, I couldn't tolerate that .(wheel- especially wanted to punch chair, sign language, guide, Robert's boss in the nose and whatever). It would require too throw a pie in church. But, many adjustments and changes since we were in an academic from me, and it might mean that setting, Robert, Rosalie, and I God does not love me." This is tried to understand what was usually on a deeply unconscious such·disrespectful behavior. A level. few themes emerged. on a conscious level, they 1. The disabled are thought might think "It could never to be morally responsible for happen to me." This is magical their own imperfect physical thinking based· on fear. In condition. Human beings need to order to deny that fear, these make meaning out of their lives. people then come up with an Events and conditions need· to explanation of why the other have a purpose. and an explana- person is disabled. This can tion. The. idea that there are often be a religious explana- random ·events that affect us,. tion. God made that person but which we cannot control is disabled as some kind of very difficult for ·people to ·punishment~ If I can be good, accept. If you are starting God won't do this to me. I can from a religious· perspective~ avoid that kind of suffering." 41 Of course, this is also free will ·is riot a ·biblical avoidance of ~motional, mental, attitude.· and spiritual growth. All three of these themes 3~ Disabled people are leave much to be desired. After healed in miracle stories and. many years of listening to these are often taken literally ~tories like Robert's and to mean that all disabled people Rosalie's, I would like to should and would want to be propose some alternative ways healed in thi~ way. The for religion and spitituality to parables of Jesus in the approach disability. Christian New Testament give , Life is for learning. Some many examples of Jesus healing people are taking the honors. people. Whether or not such course~ Life is a school room miraculous healirtgs occurred, we and each of us is taking a know that Jesus often spoke and unique course of studies. No told stories on-many layers of cheating is allowed. I cannot meaning at one time. A story cheat and try to take your tests about a·mustard seed is about and tell you how to live. If I faith, not gardening. A story am paying attention, I have about a camel walking through · ~nough of my own homework to do. ·the.eye of a needle is not a· In religious terms, -God has riddle, but about the proper designed for us a life to learn· attitude toward wealth and what our soul needs to know. eternal life. so, too, we might Lessons about patience, under- understand these healing stories standing, looking at people's as having another lay~r. inner qualities instead of In Mark 7:31-37, Jesus external conditions,.. courage, heals a man who is then able to compassion,,generosity are hear atid talk. This is a story taught in the sch9olhouse of about being open to God, not life. They are not lesson~ just a story about a deaf man unique to one particular group who hears. It is not the few of people such as people with that the literal story applies disabilities. They apply to, but the many who can equally to all of us. understand the need to be healed It is never appropriate to of a heart or a life closed to compare the courses you are God. A literal understanding of taking witn someone else's these healing stories may coµrse of study. You are, given pressure disabled people into what you can handle or maybe seeking healing to become simply what challenges you. "normal."· But the Bible also Just remember· that some of us emphasizes free will. We are must·have signed on for an not pawns in a giant chess·game, accelerated program and have but intelligent ~eings created forgotten that we did so. This in the image and likeness of the explains why some lives seem so Divirie. It is difficult to much harder than others. But of· understand how some people could course the rewards are also presume to take away the free great. Who are the most will of disabled people in spiritually inspiring people you determining their own values and know, rich, beautiful movie making their own choices. stars ,or ordinary people who . Inhibiting another persons's have faced adversity with

42 courage and style?· Just ness for this mistake. Every remember that in spiritual human being feels separate from matters things are not always God and every human being could what they seem and God has a use a healing of that relation-,, notorious .sense of humor. ship. When given the choice,. When it comes to healing, choose love over fear. The it is most often our lives that human ego· is an amazing·thing. need the most work, hot our The ego is so handy for organiz- bodies. For those who wish to ing and accomplishing things. pursue hopeful avenues of On the other hand, the ego can physical cures, that is a very take over and try to be such a in_dividual decision. Anything perfectionist that it finds the is possible, but sometimes it slightest lack of control too seems that the laws of·the frightening· t0 face. Fear, a~d physical world mean that the denial of fear, and then projec- ,body simply can not totally tiop of our own fear onto others heal. In fact, we all will as judgement of them is, one set experience a "failure" of our of ego defense mechanisms. bodies on the day we die. If you wish to serve your Healing our lives·i~ a. spirit instead of your ego, possibility open to all of us .choose love instead. Love right now. Robert does not expands where fear contracts. necessarily need more faith so Love makes life more fun, while that he can change the physical fear hides in t~e corner. Love structure of his ears. He is a takes risks witti people while strong, competent, self- fear is stuck in what it already respecting person who is pr~ud knows and expects., "Love is but of himself as God made him. a song we sing, and fear ths way After·the confrontation with his we die. You can make the boss, Robert did need to work on mountains sing, or make the forgiving such stupidity and angels cry••.• ": You can learn a ignorance so that he would not lot more with love than with be poisoned by bitterness and fear. resentment. Like all of us, Everyone's life needs Robert also needs more-faith to healing. Healing stories are be able _to live a life of inspiring because they give us .increasingly expanded compassion hope~ These stories do not for and service to our fellow apply only to people with human beings., obvious physical or mental Rosalie is a kind, outgoing problems, but to every human person who is loved by all who being that ever lived. Every know her. The healing-that human being who has ever lived needed-to be done here was of has experienced suffering. the minister, who thought he ~here is no escaping this. could presume to know what Every human being at times has stimeone else's free will ~ight shown lack of compassion for choose. And Rosalie needed to others, and could use healing in heal her need to please others their heart. Every human being instead.of standing up for has been atraid of other people herself and what she wantso In and has been cruel as a result the years since this event in of this fear, and needs forgive- the church, this is exactly what she ·has done. She now is senior pastor asked me to do the employed in a position of great pastoral prayer in the service. trust and is raising a foster Pastoral prayers are usually daughter. qonstructed in a way that they Healing our lives is-a· capture all the joys arid sorrows challenge, yes, but the rewards of the worshipping community in are immediate. The spiritual one moment of ·. the liturgy• Wha1r path you choose to follow, I did not·.realize - and I dci not whether the teachings of Jesus think the pastor did either - ·that call us to love one another was that the, same Sunday we were or the Jewish understanding that mourning the death of this we serve God when we help our qhild, we were also celebrating fellow human beings or the the life of another child with Tibetan Buddhist teaching.s on the sacrament of baptism. the compassionate heart or. some This was a very painful other religious tradition, is up pastoral moment for me. How to you. One basic princi'ple is. cpuld I give myself over to the shared by all these teachings sorrow of one family lo.sing a though. Love is always more son while expressing joy for the powerful than fear and if you birth of another healthy boy? use love to guide your life, you Neither family was free ±o are healed. release their emotions 1 and be supported by the worshipping community. I felt helpless Embracing Those Unwelcomed: during the prayer and I believe The Role of Christian Initiation· it was very hard on everyone in Excluding Persons with present that morning. Disabilities from Participation Putting aside ~hat the in Public Worship and Community senior pastor used poor Life judgement in not rescheduling the baptism, there are some more The Reverend Ms. Valerie C. disturbing elements of this Stiteler story. I do not know if· the dead child was baptized. If he· .While I still was a student were, it happened in the hos- minister, a young couple in the pital and was never honored by parish where I was working the worshipping community. It became pregnant with their first is very possible he was not, child. six ~onths into the since he was in: an incubator in• pregnancy, the mother developed the intensive care unit. There toxaemia~ As a result, their was no formal funeral for him, son was born three months even though he had been given a premature and with multiple name and was grieved over by his disabilities. family•.The most unsettling The child lived for three aspect of this episode for me weeks. In that time, he came to was that after he died, no one _be loved by his family. When he ever spoke of _him again, even· died, his family grieved as after his parents gave birth to deeply as they would have if he a baby girl. · had lived a much longer life. When studying how people The couple was heartbroken~ with disabilities enter Sunday morning came and the Christian worshiping commun-i- 44 ties 1 it is important to start only are many of the Church's methodologically with the . _ physical structures inacces- religious oral (1) tradition of ~ible, but our liturgy, atti- the disabled community i tsel.f. tudes, ceremonial, and doctrine Acknowledging that the disabled (our social structures), pre- community has its own story- clude full participation in telling abilities and its own Church life." (5) oral tradition regarding Baptized Christians who are .religion challenges u~ to disabled tell me they feel hated recognize that people with for being disabled and they are disabilities .have their own constantly told that if their record of religious history faith was stronger they could be coming out of experiences of healed by Godo They feel stared oppression and inclusion. .at and rejected by others in the Almost all theological discourse community. - either pastoral o~ academic - · This hostility is wide- is done from the church~s · spread and also involves the perspective of including people families of disabled Christians. with disabilities "into" or One disabled man told me that "back into" the worshipping when he was born, a well meaning community. · ( . woman in his church walked up·to Using the oral reli~ious his mother and asked her what ' tradition of people with sin she had committed to be disabilities as a measure for punished with a blind child. liturgical praxis allows us to This behavior is so hurtful to validate that people with people with disabilities and disabilities are a minority (2) their families that they turn with commonly shared life away from God and their faith · experiences and culture. rt· communit_ies • credits us with the possibility The World Council'of that we have a unique experience Churches document known as of the Divine which is not being Baptism, Eucharist, and Ministry articulated within faith · states: "The Christian baptism communities. ( 3) .Our spiritual is ~ooted in the ministry of fo~~ation requires the acknow- Jesus, of Nazareth, in his death ledgement of our need for and in his resurrection. It is theological a~d-liturgical incorporation into Christ who is symbols expressive of .our faith· the crucifie~ and risen Lord. beyond the rites of healing and It is entry into the new cove- reconciliation. (4) nant between God and God's Christian theology states people. Baptism is a gift of that through .baptism all people God and is administered in the are welcome.into the worshipping name of the Father, the·. Son, and community, .but the,. oral tradi- the Holy Spirit•.•• Baptism is a tion of the·disabled community sign of new life in J.esus says this is not so~ Many · ---Christ. Baptisin is partici- people with disabilities do not pation in Christ's death and feel welcome at worship. resurrection. By baptism, Encouraging attendance by making Christians are immersed in the churches architecturally.acces- liberating death ,of Christ where sible has failed in most their si_ns are buried; where the worshipping communities. "Not old Adam is crucified with

45 Christ and where the power of spirituality is· expected to be sin is broken. Thus, those based on suffering (12) and this baptized are no longer slaves to conflicts with the baptismal sin, but free." (6) doctrine of initiation ·as The B.E.M. document clearly spiritual rebirth.· . defines baptism as the only Spiritual rebirth occurs initiation rite for entrance when God acts in the. rite of into the Christian religion. It. baptism to create a permanent demonstrates that - although spiritual change within the there are several theological_ person•. The individual is freed traditions regarding baptism - from the effects of sin and th,e two dominant theological incorporated fully into the Body norms are clean~ing. away sin and of Christ. The new life offered spiritual rebirth. Since-the in Christ is transformative and participation of people with is often indicated by the giving disabilities has only received of a white robe, the ·anointing recent attention· (7) among with oil, and participation in Western Protestant (8) churches, the eucharistic meal. and since disabled people claim The transformative nature to feel unwelcome at worship, is of spiritual rebirth is usually it possible that these two illustrated by the healing primary theological norms within stories present in the New the rite of baptism are promot- Testament. Raymond Brown, for ing the exclusion of disabled example, speaks of·the healing people from worshipping communi- of the blind man in John 9 as a ties? This article is intended baptismal account. '(13) This to be only a heuristic survey, parable is a powerful one -for but there is,enough evidence to disabled Christians because it begin a conversation. is a direct statement from Jesus People with disabilities that blindness is neither a have long been defined as the cause or an effect of sin. If. "charity cases" (9) of the Brown is correct that this is a Christian Church. Disabled baptismal. account - even if only people are kept out of the allegorically - it demonstrates worshipping community by the how the baptismal motif of community members' fears of spiritual rebirth is problematic "difference." (10) Effort is for people with ~isabilities~ also made to preserve the· The Gospel tradition claims identity and integrity·of a that Jesus ministered to the given worshipping community by poor, those in prison, and had associating human disabilities an active healing ministry. The with religious 11 stigma11 (11) as response of the oral religious marks of sin. tradition of the disabled commu~ One person even went so far nity to Jesus.' healing ministry as to say to me that disabled · as illustrated in John 9, how- people themselves prefer not to· ever, points out that the be part of the worshipping· disabled people in the New community because of the shame Testament - unlike the poor and they feel rega~ding their prisoners - only became members disabilities. This kind of of the community after they were statement provides a clue for us healed. that disabled people's Spiritual rebirth as a sign

46 of the bodily transformation to recognize as civil and religious wholeness - either spiritual or excommunication•••• physical - and restoration back '." ...the nature and function into the worshipping community of the impurity can·be discerned denies the person's disability in the rituals designed to avoid as part of his or her Divine it (as in the rituals of food creation... One of the strongest preparation and diet) or.to scriptural statements we have overcome it. The latter in acknowledging disabilities as particular were largely rites part.of Divine creation is in involving water, some~imes Exodus 4 when God states that specified ·as running water. . disabilities are'a consequence Their development was especially of Divine creative power. God ·rapid in :;the New Testament era tells Moses, "Who makes huinans as the codification of earlier dumb, or deaf, or seeing, or. practices was undertaken by blind? Is it not I, the Lord? rabbinical schools. For them·, Now therefore go, and I will be with the washing of bodies must with your mouth antl teach you go the cleansing of hearts." what you·shall.speak. 11 (14) . The transformative action ·r contend .that even though of spiritual renewal in baptism Christian· theology does not is paired with the washing away claim that maintaining ritual 0£ sins. This theological norm purity is a consideration when is even more problematic for developing Christian initiation people with disabilities .because rites, it is still a major part it is directly linked to the of Christian theological and levitical laws regarding ther liturgical consciousness; The maintaining of purity within the levitical sanction against the worshipping community. Aidan presence of disabled people at Kavanagh states the following worship was ingrained in·early regard1ng the.Hebraic ablution- Christian worship practices (15) rituals surrounding purity and and is sti.11 operating in the impurity which predate Christian emotional consciousness of many baptismal. practices: "'impurity members of the Christian commu- was by contact with such nity today. Evidence of this· numinous realities as blood, consciousness is reflected in corpses or tombs, anima1s the language and ·imagery used in defined as 'strange,' or with baptismal rites. persons suffering from certain The consciousness of ritual diseases that were manifestly purity is most present in the loathsome no matter what the use of water to represent the subjectivity of the sullied cleansing of sin and anointing person might be. , Yet the focus for healing. The B.E.M. docu- of the matter rested not on the ment ma~es this startlingly impure objec·t but on the effect clear: "As seen in some contact with it had upon the theological traditions, the use person, who was ipso facto of water, with all its positive rendered unfit for any relation- associations with. life and ship with God or, by extension,· blessing, signifies the conti- with his people.. Ritual nuity between the old and the uncleanness·resulted simul- new creation thus revealing the taneously in what-we today would significance of baptism, ~ot 47 only for human beings, but also participation in the eucharist for the whole cosmos~ At the is now the "true" symbol of same time, the water represents incorporation into the commu- a purification of creation; a nity, not baptism. dying to that which is negative In order to recover baptism and destructive ·in the world•. as a welcoming initiatio~ rite Those who are baptized into the for Christians with disabili- body of Christ are made par- ties., I want to propose some takers of a renewed existence." additional methodology to use (16) with the oral religious tradi- Based on the preceding tion of our community. James Fo argument, one may wonder why if White presents a helpful tool so many disabled people do not for our exploration. feel welcome in Christian.commu- He describes his measure of nities, why are so many of them liturgical praxis as the "litur- baptized? Bear in mind that gical circle." (21) This circle when baptismal practices were begins by observing worship developing in the first century, customs, determining the they were unified rites signi- theology they articulate and fying the conversion of adults then revising the liturgy with consisting of the convert's the constantly renewing education, baptism with living theolo'gy. water, anointing with oil and This is a functional then admittance to the eucha- approach. This method derives ristic meal. (17) theology from the sacraments cur~ent liturgical practice rather than imposing upon the broke up the initiation rite so' sacraments an abstract theology that~ even though eucharist that fits some better than still remains as the only others~ (22) This, coupled with repeatable aspect of baptism our oral tradition, will allow (18) baptizans seldom receive us to begin assessing whether eucharist at their initiation baptismal theology itself is into the worshipping community. promoting the active exclusion This practice was partly of people with disabilities from influenced by the baptism of the worshiping community or if children which was fully the forms of the rite along with developed by the third century. its metaphors and imagery are (19) Eucharist is often now creating a hostile social delayed until confirmation when atmosphere within Christian an adolescent can make a communities. More careful study personal profession of faith. of the Christian historical (20) traditions regarding the baptism Baptized Christians with of people with disabilities will disabilities are rarely seen at elucidate the influence of eucharist which is now the sign theology on the role Christians of community participation even with disabilities have within in churches that practice church communities. monthly or quarterly communion. One other method we could Many disabled people either do employ in examining the value of not attend worship at all or current initiation rites for have the eucharist brought to people with disabilities is them in their homes. Full exploring how Jesus Christ acted j 48 (23) to~ard people with disabi- Notes lities during his ministry and then valuing their respon~e as . 1. I do nqt mean solely the participants in their own· literally "spoken" tradition of salvation instead of as just storytelling with oral language, subjects to be acted upon. To but the collective life what extent do the healing experiences and images held by stories reflect the emphasis the disabled community regarding that either Jesus or the Church organized religion. placed on baptism as a healing 2. Harlan Hahn,· "The sacrament? Politics of Physical Dif- The development of the ferences: Disability and baptismal traditions are not as Discrimination,"Journal of codified as current literature Social Issues 44 1 No. 1 (1988): may lead us to believe. (24) 39. Through critique of the roles 3. Valerie c~ Stiteler, people with disabilities have "Gathering Together: Forming been assigned throughout church Faith Communities amo~g Persons ' · history·, we may find ground with Disabilities," Disability breaking material which will Issues 14, No. 7 (July 1993): 1. help us to honor ourselves as 4. James F~ White,-· disabled Christians with gifts Introduction to Christian to offer the Church through our Worship. Revised Edition presence in community. (Nashville: Abingdon Press, Peter - the child I spoke 1990), 181. White writes: of at the beginning ·of this "Protestants have paid~ penalty article - was unwelcome in his for the loss of healing as a church community. I doubt that sacrament, partly by the out- he is even remembered by many of cropping of bizarre and specta~ the people who were in the cular efforts· to minister to a church.at the time of his birth basic human need:_the desire for and death. Even though he was God's help in restoring health." ·unwelcomed by his community, he -This theological premise cont~i- ·is still remembered by his butes significantly to the· / family, by me, and most 'exclusion·of dis~bled people especially by God. from Christian community life. The challenge is before us Most of the literature regarding all to mak_e a welcome place for disabled people in the Church is everyone in our-church commu- found in discourses on physical nities. Those people with and spiritual healing. disabilities who want to worship 5. Christopher Newell, in Christian communlty deserve "Reflections on The Church and the freedom to participate in People with Disabilities,". st. ways that express their Mark's Review (Winter 1990): 260 uniqueness as _people of God. , 6. World Council of Providing architectural access Churches, Baptism Eucharist and alone is not a true "welcome." Ministry: Faith and Order paper Disabled people need to be #111 (Geneva: World council of embraced,by the community. We Churches~ 1982), 2. · need to be accepted and honored · 7. Da~id Briggs, "Churches for who we are as Christians and cut Back Ministries to members of tne church community. Disabled," The Patriot Ledger,

49 13/14 August 1994, 36. It is sibility," The Witness 73· interesting to note that in 1981 (December 1990): 18. almost every American Christian 16. World Council of denomination had ministerial Churches , 7 • , programs for the disabled commu- 17. Kavanagh, 9 • . nity and as of October of 1994, 18. White, 218. all but two major denominations 19. Ibid., 196. have closed their ministries to. 20. Ibid., 180. the disabled community•. 21. James F. White, Sacra- 8. The Western Roman ments as God's Self-Giving: Catholic Church and the Eastern sacramental Practice and Faith orthodox. Church have been (Nashville: Remington Press, addressing issues regarding 1983), 10. ministry to people with 22. Ibid. disabilities for centuries. The 23. White, Introduction to· attention, however, has been · Christian Worship, 169. Litur- focused largely on the eligi- gical scholars debate whether or bility of receiving the not Jesus commanded the· insti- Eucharist by people who are deaf. tution of baptism, or if the or mentally retarded. · more correct methodology when 9. Susan Hanaford, Living evaluating the scriptural Outside Inside, A Disabled tradition regarding baptism is Woman's Experience: Towards a to evaluate Christ's ac~ions. social-and Political Perspective 24. Ibid. (England: Canterbury Press, 1985), 30. 10. Sara Fischer, "No Viewing Christian Theology Inclusivity without Acces- Through Evolving Disability sibility" The Witness, 73 Lenses (December 1990): 19. 11. Erving Goffman; Stigma: Mary Jane Owen, M.s.w., -Notes on the Management of Executive Director, National Spoiled Identity (New Jersey: Catholic Office for Persons with Prentiss Hall, Inc., 1963), 1. Disabilities, Washington, DC 12. Esther c. Stine, "The Disabled, the New Community and Care of the invalid, the The World," Church and Society cripp1ed, the halt and the blind (January-February 1979): 10. was viewed as a charitable duty; 13. Raymond E. Brown, S.S., the giving of alms sufficed to The Gospel According to John quiet the harsh realities of (I-XII}, Introduction, Trans- such tragedies. But evolving lation, and Notes, vol.29, The miracles of medical science and Anchor Bible, second edition, rehabilitation techniques have (Garden City, New York: Double drastically altered the scene. day and Company, Inc., 1985), Each year hundreds of thousands 380. of people rescued from premature 14. Aidan Kavanagh, The death by these evolving inter- Shape of Baptism: The Rite of ventions hope to find welcome Christian Initiation (New York: and inclusion; to take their Pueblo Press, 1978), 6-7. rightful place within their . 15. Sara Fischer, "No religious communities. Too Inclusivity without·Acces- often they find the ancient 50 .' ;;1 '1,

conceptual lenses through which person toward whom it is good people vi~w disabilities - directed. It is 1 an unwanted and distort their potential and fail unwarranted projection of to see that,each of us are society's fear and discomfort. essential in building the Body Respectful compassion and mutual of Christ on earth. There is recognition of our shared need to re-grind those fragility must replace it if we theoretical lenses and end the are to be united, as church. patterns of exclusion and feare Those who utter ·· the phrase , FIRST: There is need "There but for the grace of God within our theological thinking go I," often fail to recognize for a paradigm shift from a the verdict they apparently are medical model, which sees people leveling against those whom they with disabilities as "patienis" pity.. with "special" ~eeds, to a. , FIFTH: This fifth altera- p6litical-socio-economic alter- tion in our conceptual .lenses is native which conceptualizes the. pivotal if we are to fully cele- environment as the "handicap- brate the lives of our brothers ping" factor. · and sisters who are disabled. SECOND: A more relevant· For ·if we grind a new conceptual. definition, that: "Disabiliti.es lens which -views the :hatura'l are the expected, moral and occurrence of human vulnerabi- ~nticipated result of the risks, lity and fragility as a vit~l- stresses and strains of the part of God's plan, we see living process itself," needs to beyond past fears and loathing be articulated. _This new of that status. 'until we can perspective views disabilities view this, trait as valuable to .as an expectation within every the 1 health of any social system, social group rather than as an we will lack.motivation to alter individual tragedy. Therefore our current patterns of inadver- universal design moves to the tent exclusion and separatism. top of the church's agenda, · Our vulnerability, which since none must be excluded from has been encoded into our gene ·the circle of concern. pool, can be the catalyst which THIRD: The symbol of the brings us into community and Cross is essential in the faith church with renewed recognition life of all Chri~tians. ·But we that we need each other and our are also the Easter people, who godo When He tied the ·gift of look beyond Good Friday to the life to the trait of vulner- sunrise of Resurrection when ability, He may have given us Christ: revealed.•the power of the ·the essential incentive to human spirit to prevail. The counter our tendency toward familiar theological view that disregard of our mutual need for those with disabilities are each other. Our interdependency joined with Christ in suffering strengthens us as community. can be extended to view each "My weaknesses and strengths rehabilitation as a minor combined with yours are what recapitulation of His Resur- community is about." ·Each time rection. Thus we confirm we are one feels needed and essential all a part of His Body. to another, the thread~of FOURTH: Pity limits, interaction are reinforced and shames and never elevates the the fabric which holds us ,

51 together as church and society nonjudgmental friend·to his is powerfully strengthened. Lieutenant and matter of factly offers him an opportunity for renew~d self-esteem. as his Spirituality and Religiosity: business partner on a shrimping Thoughts from a Rehabilitation boat. When Lieutenant Dan at Perspective last assumes expected social roles again - indicated by his Nancy G. K~tner, Ph.D., use of a prosthesis and his Department of Rehabilitation engagement to be married (both Medicine, Emory University of which might be considered School of Medicine, Atlanta rehabilitation markers)· - Forrest observes that "it looks . Religious be·liefs and .like Lieutenant Dan has finally spirituality are potentially made his peace with God." powerful forces in the lives of For a long time following individuals who experience. a Lieutenant Dan's battle injury, disabling event or the onset of the notion of a righteous·God a disabling process. Religion was incompatible with his view and spirituality are generally of his own life as ruined· - consider~d significant support especially a life ruined through sources in time of trouble. But rio fault of his own and contrary do spirituality and religiosity to the plan he had made for how foster .rehabilitation? things should have worked out. In the popular.movie He had to painfully.make his way "Forrest Gump," Lieutenant Dan - back to a point at which his a. strong, healthy male who life as person with a disability suddenly finds himself an had meaning and order, but this amputee - vividly portrays the process was itself a rehabili- experience of reacting to a tating experience. · profound physical loss. Other people who become Lieutenant Dan is intensely disabled, however, accept their angry that Forrest and medical situation by maintaining that. expertise have conspired. to make God "knows best." While this nim survive as a less than facilitates disability physically whole person. As a acceptance, if disablement is military man, he had reconciled viewed as "God~s will" there may himself to the possi.bility ·of be little to·· motivate the death, but he had never · individual toward rehabili- envisioned himself living the tation. This effectively makes rest of his life with a perma- rehabilitation.impossible nent disability. Like many because rehabilitation cannot be individuals who incur a disabi- ./ "done to" an individual. lity, he goes through the. Rather, .it requires the classic stages of the gri~ving. individual's active process. Depressed and .angry, · participation: 1'Rehabilitation he scoffs at those who ·urge him is both a physical and mental to "find Jesus" and tries to effort in which the ,individual dull his pain in alcohol and uses his residual capacities to commitment-free sexual liaisons. compensate for his losses Forrest Gump, always uncompli- (Chyatte 1979:28). cated and unassuming,. remains a · At the same time., spiritu- 52 ality and religiosity can maximize an individual's furnish a tenacious optimism residual .capacity for optimal that aids the rehabilitation. function in the usual environ- process. As one patient noted ment." who was .interviewed in our studies of chronic dialysis References patients, it helps to "believe that God is going to do a lot of Chayatte, Samuel B. positive things for you.••. 11 ' Rehabilitation medicine in Sources to which individuals 1 chronic renal failure •. Pages look for help in improving their 28-45 in S.B. Chyatte (ed.), - health and functioning can be Rehabilitation in Chronic Renal grouped into three categories, Failure. Baltimore: Williams & according to Selvin (1978): Wilkins, 1979. "mystical- sources (God, faith, Newmann, John •. Adjusting the healing process, luck); · to dialysis: A consumer's view. rational sources (doctors, Presented at the Second Annual nurses, therapists, diet,. Renal Rehabilitation Conference. exercise);. personal sources Atlanta: Emory. University, (yourself, your family, your 1979. friends)." Optimal rehabili- Selvin, Hanan. Personal tation outcomes .are likely to communication, 1978. require reliance on all three. When asked to explain how he had managed to adapt to life on chronic dialysis after develop- ing renal failure, for example, Religion and Disability: A New one patient said, "We just Wave worked with the Lord and the kidney_ machine." _Marilyn E. Bishop, Center for One final thought: A Ministry with Disabled People, frequent "spiritual" theme in University of Dayton, and the personal accounts ·of coping with. administrator of the National chronic illness·and disability Council of Churches Committee on is heightened appreciation for Disabilities. life, e.g., the many beauties· and.mysteries of nature of "the Religion and disability--is inexplicable variety of human not a familiar combination among love, thoug~t, and expression" disability professionals. (Newmann, 1979). Slowing down. Perhaps it is the word and "taking one day at a time" "religion" that iurns on the is a recommended mechanism to caution light. Maybe, seen side reduce stress and promote life by side, the two words suggest a satisfaction, regardless of an clash between church and state. individual's health status. Or, maybe the word religion This "spiritual dimension~" an conjures up images of churches, ingredient of both successful temples, and synagogues that ,. living with a disability and exclude by virtue of their successful living in general, structures--structures that are 'is therefore consistent ~ith a botti physi6ally and attitudi- widely accepted definition of nally daunting. But, the scene rehabilitation, i.e., "to is changing._

53 In 1980 the University of Religious Instr~ction: Dayton's Center for Ministry .Separate curriculums available with Disabled People (then in many Christian denominations; MORES) undertook a project to :inclusion and neceseary instruc- identify the religious needs of tional adaptations are Dayton area people who were beginning. disabled. The overall need of Signed Worship Services: these people with physical, Many mainline Christian churches visual, and-mental challenges offer one or two sites per was to participate. in the total· community; larger cities offer life of the place of ~orship. church for deaf, but in few People who were deaf and used denominations. American Sign Language were not Braille and/or Large Print so concerned about participation Worship Material: Revised in the total faith community, Standard Version of Bible but rather focused on signed available in braille; some worship services and religious worship services/readings education. provided in large print by In the ensuing years, many individual congregations or by congregations began to reach out publishers. to people previously excluded' Seminary Education for because of inaccessible facili- Ministry with Disabled People ties and the rigid sanctuary and. Families: About eight structure. Sunday school accredited seminaries offer a classes began to welcome separate course for this students with mental retardation ministry; about thirteen address - some in separate classes, this type of ministry in another others in regul~r classes. More course. religiou_s education and worship Active Clergy Who Are materials were published speci- Disabled: One national fically for the-visually organization exists to support impaired member and the slower ministers who are disabl~d. learner~ Gradually, organized Seminarians Who Are religion responded to the -Disabled: An increasing number reali.ty of the world situation: . of people with disabilities are people who are challenged by a enrolling in seminaries. variety of limitations do -exist Tak.en as a whole these. in our society and are searching items give rise to a number of for spiritual access in the important questions in the field religion of their choice. of religion and disability. ·Below is a list of various They also identify issues more aspects of how organized commonly associated with religion and ·issues of disabi- parishioners or congregants with lity intersect along with a disability, issues particular to brief analysis by the author of" individuals called to ministry·, the ~urrent situation in e~ch of and those common to both. those areas. When we look to what Church Building Access: religion has had to say to Increasing number of ramps; some people who live with challenging increase in other necessities limitations, we find that most such as restrooms and social of the literature about disabi- halls; little access to altar. lity ministry has focused on the

54 topics of access and exclusi- of liberation theology. The vity. Even here discussions and author living with a life-long concerns usually were limited to disability, writes about her the notion that if buildings theology of a disabled God: "At were made accessible and if the the resurrection, the disciples attitudes of parishioners change understood the person Jesus for from fear and awkwardness to who he really was. Only through hospitaliti, then all would be the lens of resurrection could well within the disability they understand the meaning and community. As Stanley Hauerwas significance of the life of of Duke University says in Jesus on earth. In the resur- Religion and Disability (Sheed & rected Jesus Christ, they saw Ward, 1995): "Through the prism not the suffering servant for of worship, Ch~istiaris discover whom the last and most important mentally handicapped people as word was tragedy and sin, but brothers and sisters in Christ. the disabled God who embodied • . • Through their willingness both impaired hands and feet and to be present in church, they pierced side and the imago Dei." provide the church with the time (p. 99) , to be church. We thus learn William Blair, a Presby- that we can take the time for terian minister whose three- someone who does not talk well wheeled chair is a familiar to read the Scripture. We can scene in Birmingham, Alabama, is take the time to walk slowly co~editor of the· Journal of together to the Communion table Religion and Disability. Blair when one of our own does not considers disability and walk w~_ll or at all. We can religion through the lens of a take the time to design our theology of "steadfast love." places of gathering so that they In And Show Steadfast Love are open to many who would (Presbyterian Publishing House, otherwise not be able to be Louisville, KY, 1993), he there." (pp. 60-61) writes: "The core philosophy of But a new wave is coming-- Christianity is one of love. and it combines the questions of Indeed, all our spiritual well- who speaks about the role of being as Christians rests in the religion in the life of people assurance of God's enduring, who are disabled and just what steadfast love for us. We are does religion have to say to comforted, humbled, and inspired people who are disabled? These by hesed--the love that brought finer points of the questions Christ to us, and we often find about religion and disability it difficult to follow the are being addressed gradually by example of.love God has given ·people who live with a handi- us." capping condition. over time, The rise of leaders such as they themselves are becoming the these raises important questions leaders in this field because about the future leadership of they are professionals in the disability movement within ministry. For instance, the organized religion. The advo- book The Disabled God by Nancy cacy movement within religion -L. Eiesland (Abingdon 1994) sets has been lead primarily by the topic of religion and people without disabilities, but disability within the context with experience and compassion

55 for the issues of justice for bringing him a paralytic carried 1 people who are disabled. With by four men, but as·the crowd the advent of new, vital leader- made it impossible to get the ship by people who are disabled, man to him, they stripped the what will the rolerof the roof over the place where Jesus ,i previous leaders be? Partner~ was; and when they had made an ship will be the most conducive opening, they lowered the to progress as people realize stretcher on-which the paralytic the necessity for a multifaceted lay. Seeing their faith, Jesus approach. The National Council said to the paralytic, 'My of Churches Committee-on Disabi- child, your sins are forgiven.' lities is beginning to develop. Now some scribes were sitting · its own policies on this there, and they thought to question- with a first step· to.be themselves, 'How can this man a mentor approach: people with talk like that? He is blasphem- disabilities are invited to key· ing•. Who· can forgive sins but events so that they can learn God?'" (Mark 2:3-8) ' the internal-workings of church. This text is used to organizations. encourage outreach to include The changes within the everyon·e , incltiding those w:ith field of disability and-religion disabilities.· But what of those can be highlighted with the elements missing from this brief prepositions To, For, and With •.· script?· Formerly, we ministered to Who made up that crowd people who were objects of clustered around the door?. They· charity; then we ministered for· must have been intrigued by people who needed our service. Jesus for they were unwilling to Now we minister with people who· give way to allow the entry of· live and participate in the the disabled man and his churches, the temples, and the friends. What conclusions for synagogues of America. our contemporary church might we draw from their behavior? What was their role before and after the events included in ·the Missing Characters in a Gospel story? Did they realize they Story had blocked the door or sense any obligation to have moved Mary Jane Owen, M.s.w., aside to allow the man and his Executive Director, National :companions entry into the house? catholic Office for Persons with Here we can only wonder, but we Disabilities, Washington, DC witness .unfolding events in our world today. Those of us who are What role might the man Christians often use the story himself have assumed? 'Did he of the paralyzed man from the insist upon being taken to meet town of Capernaum to highl'ignt this man he had heard about? Christ's interest in those who Did he think he had a right to are handicapped by inaccessible b~ present in this crowded place facilities as well as to serve or was he somewhat embarrassed as a Gospel base upon which to· that his colleagues made such a build a hominy. The story is mess and flurry about getting familiar: "Some people came him.into the room. Had he .and his friends talked of his need healing power? Do they mirror to share the experience of those authorities in our contem- hearing the Good News from this porary world who question the str~nge teacher from Galilee? value of the lives qf those who Had they hoped to alter his life live with di~abilities? Surely by providing him with this Jesus acted out of concern and opportunity? Was the paralyzed with little attention to the man the passive recipient of the protocol of the d'ay. blessing he was about to receive , There can be little or an active part of the question that disabilities are a encounter? From the story it· familiar challenge to many seems Jesus was moved·by his families. A Louis Harris and friends' faith. Was that Associates survey of a few years because the man .lacked such an ago indicated ~hat one family in expectation? And how did he three includes a member with a feel.upon ·being told, "My child, disability. And these indivi- your sins are forgiven." We all duals' relationship with their experience failures and self- parish is often complex.and recrimination but what·sins painful. Too often when might have justified the families find a loved one . "punishment" of this particular excluded from a church service individual? Or was that what or program, the whole family Jesus meant? fades away, unnoticed and un~ And what of his family? missed. The connection between Was he someone's son or father; our religious communities and had he filled an essential role those with disabilities must be in the family which had been examined and discussed. We know disrupted when he became hpw to build inclusion into our paralyzed or had he been secular world. 'We must do no dependent all his life? At that less within our religious time and in that place such a environments .. significant disability would If bars are more accessible have presented almost insur- than altars; if movie theaters mountable challenges to those are more welcoming that around him. Was he brought to. churches; if television that roof over Jesus' head out ·producers are more concerned of love ct d~speration? Had the about creating programs acces- pattern of caretaking beco~e sible to the blind and deaf than ingrained in the family culture? our liturgists; if publishers of Would they welcom~his altered pulp fiction are more dedicated role as healed? -We know that to production of books in acces- within contemporary families sible formats than religious there is sometimes a need for a 1 printfng houses; then we might scapegoat: someone to blame for , be seen as a part of that crowd1 failures to move on with life. clustered about the door and What.alterations were essential oblivious to the need for all to in his family's constellation· be present to the Good News. when he was no longer dependent? And what of those scribes who sat in judgement and raised questions about the legitimacy of this,simple sign of Christ's

57 What Does ADA Mean to U.S. and received assurances from the Churches Bush administration that they would not be .compelled to comply Mary Jane Owen, M.S.W., with the.public accommodations Executive Director, National requirements of the new law. Catholic Office for Persons·with There was· no such exclusion from Disabilities, Washington, DC the employment sections. Title I. of ADA requires Although religious organi- that all religious organizations zations and those entities which with 15 or more employees meet they control have been exc1uded the standards set forth by the from·some aspects of the Ameri-· regulations compiled by the U.S. cans with Disabilities Act, Equal Employment Opportunity primarily in the area of public. Commission through job restruc- accommodations, most mainstream turing, appropriate accommoda- religions have a tradition of tions and job descriptions·which adhering to a moral obligation clearly state the essential to serve those.whose secular functions required to do a freedoms are now covered under specific job. Applicants f.or a the civil rights umbrella.of job with a religious entity are ·this law. In fact, both t:ne Old protected from.pre-employment· · and New Testaments include inquires about disabilities, instructions to care for the although the potential employer vulnerable and weak. may ask questions about the Those sections of the Reha~ applicants ability to preform bilitation Act of 1973..dealing those t~sks established as with facilities receiving essential to. the job. federal funds and establishing In order to avoid unlawful requirements to accommodate behavior at any stage of the those with disabilities did not process, it is well to have job exclude.religious entities nor descriptions which clearly.state did the·Fair Housing Act Amend- what must be accomplished, not ments of 1988 nor the Voter how it is expected to be done. Accessibility Act of 1985. With such clarity at hand an Therefore, those religious interviewer or supervisor can entities which provide social refer to elements considered services funded .through· f.ederal essential, rather·than becoming assistance and those churches confused by divers{ty of func- with various housing project.s tion•. Focusing on capability have been required to comply and exp-rience in fulfilling since.those. earlier laws went essential tasks ·simplifies~ · into effect. In addition process which might otherwise religious facilities utilized seem confusing and complex•.· The for voting are to be monitored National Catholic Office has by civil authority to assure prepared materials which will access for the elderly and assist those within its network disabled voters. to· create appropriate job.

However, during negotia- descriptions and be familiar wit ! •• tions with the Bush administra- the sorts .of questions which can tion some churches concerned be legally asked. We also have with governmental "interference" prepared a.sample employment in their operations requested policy statement which we 58 · strongly recommend b.e a part of previously faced barriers in . the official documentation .of fulfilling their God g;iven various offices~ . (See the potential. resources section.) One other section which merits attention, even in this brief overview, is Title II, which deals with public services. It does not specifi- Resources cally exempt a religious entity if it engages in a public The National Catholic program which offers services. Office for Persons with Disabi- These might be a meal site for · lities'-s (NCPD) newly revised seniors or nursery program far 215 page pastoral guide to children, an adoption agency, a access .and inclusion has just shelter for the homeless or an been published. · Opening Doors office which provides a.counsel- to People with Disabilities ing service~ Since state and answers questions asked by local entities are required pastoral workers, bishops, . to comply withADA, it follows pastors, people with disabi- that such programs run within lities, family members, religious facilities must be catechists, and providers of accessible. social services. currently Such a brief review of available at the introductory religious organization~' obliga- price of $10.00 plus $4.25 tions under ADA can only sweep shipping and handling,· it can .be over the surface of the issues. ordered from NCPD, P.O. Box However, it must be-noted that 29113, Washington, DC 20017. · ADA has forever altered the . The NCPD has also published expectations of the 49 million a guide to accommodations for people it.covers as they the ten million Catholics in.the approach their houses of worship United States who are classified and the services provided. Just as disabled. The guide is as we assert certain freedoms titled A Loving Justice: The are within our "Constitutional Moral and Legal Responsibilities rights," without knowing exactly of the U.S. Catholic Church what thathistoric document under theAmericans with guarantees, so it is with ADA. Disabilities Act and was It is less important what this presented recently to Rev. Msgr. historic document requires of Dennis M. Schnurr, the newly U.S. churches than how far it appointed Secretary General of has raised the .expectations of the National Conference of those 49 million people covered. Catholicr1 • :Bishops • and, the U.S. Never before have so m~ny dis- Catholic Conference (NCCB/USCC)e abled people and their families He commented: "For all those come to their houses of worship · who seek to build ·inclusion into with such high expectations. If our parish buildings and we are to continue to minister activities, this publication to ·Christ's flock, we must will prove a valued resource. exceed the minimal requirements In addition to offering answers of the law and .match the expand- to the most common questions ing expectations of those who about the Catholic Church's

59

\ legal and moral obligations $24.95 hardcover. under federal law, it includes Since its origins in the statements from our religious late 1960s, the National Theatre leaders calling upon us to of the Deaf has presented more welcome and include all His than 6,000 performan6es in all people with loving concern." fifty states - a record Edited by Janice LaLonde unmatched by any other American Benton and designed by M. Luisa professional touring acting .. Velasco, this 58 page guide was cdmpany. Since.its first reviewed by USCC's Office of the European tour in 1969, the'NTD General Counsel.· While not a has performed twenty-eight substitute for legal counsel, it foreign tours to thirty-two provides practical answers to a countries in five continents. multitude of questions. During ·the course of its brief NCPD was 1 established in twenty~five year history., the · 1982 to promote and foster the NTD has won numerous awards for 1978,U~S. Catholic bishops' artistic excellence; more impor- pastoral letter which calls for tantly, however, the company has inclusion and welcome.of those met the objective of its with-disabilities within the founders and demonstrated·that Ch~rch and society. It an acting companyrof deaf actors accomplishes this task by work- who used American ~ign Language ing with those leaders called by could become a professional, their bishops to develop pro- artistic, and financial success. grams and plan~ for inclusion at Stephen Baldwin, who ·has the parish levels and through his doctorate·in theatre history other national level catholic from the University of Texas, is·· organizations. It develops and a teacher, actdr, and play- distributes resources to assist wright. Deaf himself, Baldwin in this.mission. is well-qualified to trace the A Loving Justice: The Moral history of the NTD from its and Legal Responsibilities of_ · shaky origins (1959-1967) when the U.S. Catholic Church under its supporters, actress Anne the Americans-with Disabilities. Bancroft, playwright Arthur Act is available at $7.50 single Penn, psychologist Edna Levine, copy, $6.50 for multiple copies, and Broadway set designer David plus additional charges for Hays sought federal funds ·which handling and mailing. Order would demonstrate the capabi- from: National Catholic Office lities of deaf performers given for Persons with Disabiiiti~s, an opportunity .to work with P.O. Box 29113, Washington, DC theatre professionals •. Moreover 20019, Tel: 202/529-2933.) as a writer active in local deaf community theatre·, Baldwin is , personally acquainted with nearly all of the deaf per.sonnel Booknotes · whq have been.as.sociated with the NTD. Baldwin, Stephen C. Pic- As such, he clearly lays- tures in the Air, The Story of out the performance chronology the National Theatre of the and identifies all of the major Deaf. Washington, DC: Gallaudet players, artistic.and admini- University Press, 1993, 142 pp.,. strative, important to the· 60 . success of -NTD. Baldwin also the U.S. Congress, objected to clearly explains the difference the signs on television as "any- in what he· calls a theatre for thing more than an artificial the deaf and a theatre,of the language, and a foreign one at deaf. His,torically, the deaf that, for tbe deaf •••• " If the community has a strong tradition NTD.did nothing else, it put ,the of sign language.theatre lie to the Bell Association oral composed of volunteer companies proponents and allowed ··hearing and scripts of interest to the audiences to understand the deaf community. Unfortunately, linguistic power of American these theaters for the deaf hav~ Sign Language. never been commercial .successes Baldwin's history of the and have never attracted non- NTD is almost too good to be deat audiences •. The NTD changed· true. Admittedly a success this pattern. As a theatre of story in American theatre and the deaf, deaf actors who use the deaf community, Baldwin's American Sign Language, ·NTD analysis is not very critical. aimed, through the direction of Although he mentions that there its original and curr~nt have been very few deaf adminis- director David Hayes, to attract trators at the NTD, he has not primarily h~aring audiences to · pursued this aspect of .the its performances. Initially, story. For example, there is this caused some. hostility by very little. discussion of the some deaf audience members who role of Bernard Bragg, a major has difficulty comprehending the deaf actor who became a part of theatrical signs or story lines the NTD from its inception. His of NTD performances; however,- focus is also very narrowly Baldwin alleges that this has confined to the deaf community. passed and that the deaf commu- He makes no effort to relate NTD nity now ·understands and accepts to the larger disability the social and educational value movement and recent efforts by of-the NTD. disabled advocates to seek Baldwin also clearly employment for disabled actors describes the importance of the or to remedy stereotypical decision that the NTD would be a rmages of disability in touring company. · Even though · Hollywood and Broadway.· . the company would establish These are, however, minor numerous training and educa- criticisms. Baldwin's primary tional programs-at its head- objective-was to provide a basic quarters in Connecticut, the historical description of the heart of its success lay in the National· Theatre of the.Deaf. fact that the company went out He has done this and anyone who to America, as well as other is interested in theatre parts of the world, and demon- · history, deafness, or disability strated the.artistic merit of should add thia monograph to sign language and capabilities their collection. of deaf performers. (Johns. Schuchman, ,, Two weeks prior to its Gallaudet University, first television appearance on Washington, DC) NBC, the Alexander Graham Bell ~ssociation, through telegrams Webb-Mitchell, Brett. God to the network and members-of Plays Piano Too: The Spiritual

61 Lives of Disabled Children. threefold: 1) Presence as Crossroad, New York, 1993, 191 trusted friends: family members pp. $21.95 softcover. need a space. with people who God Plays· Piano Too by have no agenda for them. Out of Brett Webb Mitchell is a good this listening presence will read for anyone interested in flow the practical supports improving the connections needed by the family. 2) A between families with a disabled. forum to ask the hard questions child and faith communities. of God: Who is responsible for Collecting. stories from people disabilities? How is a.disabled with disabilities, Webb Mitchell child made in the image of God? writes resoundingly that The questions pivot around disabled people are looking for suffering and pain in the con- the same response from the faith text of a God who loves us. 3) community as non-disabled 1 Church as sanctuary: ~he church people~ can be a ·place where children The author brings a rich with disabilities are· seen as a work history to this·topic: as a whole people, regardless of.what music therapist and a minister, they can and cannot do. · Webb Mitchell chose the ~tory- In turn, families with a telling mode because in sharing disabled child offer lessons to stories we learn both who we are. the community. What disabled and whose we are. Stories put a children-teach their parents and face on abstract concepts and siblings is the ability to put are the basis of our ability to asid~ personal wants in service understand and experience God. to another. By their very Three concentrations :of presence,. they speak volumes information emerge from this about church being a compas- book. The first is the author's sionate space.. Families with a personal growth in understanding disabled member teach about care the primacy of the person. and commitment. The faith com- Then, readers learn what is. munity learns what it means to wanted from the church, and be committed to -a family, no finally, what the church can matter what. learn. 'Where people with disabi- Through living with and 1lities are, there is diversity. working with disabled people, Diversity is critical for the author comes to see them· as parishes to flourish because it people with unique combinations reminds us of our being loved ·of abilities and limitations for who we are and not what we rather than as "victims." rThis. do, ·a core·teaching of religion. book grew out of his desire that sustaining this diversity, how~ their stories be heard and ever, is difficult because we understood and that.their naturally fear differences. contributions be celebrated. God Plays Piano Too is an The .birth of a child -with a excelient primer.for readers disability demands revamping of interested in strengthening the the dream of the family. The bonds between familie~ with a family needs support from many disabled child and their family fronts, one of which is the community. faith community. What support (Mary Jane Steinhagen, the .church has to offer is · Catholic Charities Advocate, st. Paul, MN). ones" and ·aS people less than human. / Webb-Mitchell, Brett. One.chapter· details1a brief Unexpected Guests at God's history and theological reflec- .• Banguet: Welcoming People with tion of the plac~ and presence Disabilities -Into the Church. of people!with disabilities. Crossroad, New York, 1994, 184 Truths which emerge from the · !~p., $17.95 softcover. historical overview are that Unexpected Guests is ·an people will always ~ave disabl- excellent follow-up to God Plays ing conditions and always have Piano Too •. This book is filled faced a world which wants to with practical suggestions on transform them.into ·something creating welcoming, inclusive other than who they are. In · communities. c1osing this chapter, the author The book is built around a writes that including people parable found in Luke 14. In with 4isabilities is essential this story ail of the guests to the life of the faith commu- invited to a banquet find nity because they are children reasons not to attend. The of God and children of the host's desire to.have this Church who the Church should not banquet impels him to send choose to be without. servants -out to invite.people The author notes that our previously overlooked. Disad- task is to discover and take vantaged people, certainly those seriously the needs and concerns with disabilities in early of the "unexpected guests" in Jewish times, became the invited our dohgregations. Conversation 'and welcomed guests. This with disabled people and their parable presents an idea about families will give basic· the nature of the kingdom of knowledge of what's been missing God. . and of who's been missing Luke 14 present~ several because their _needs have been clues about whom we can expect ignored. By seeking.out that to find in God's kingdom. An information, the church commu- obvious· lesson is tha!t member- nity .is tacitly.acknowledging ship is not based on -oney," its·need for transformation from fame, or deeds. but on accepting a "community for myself" to the extended invitation. Then "myself for the community," the.banquet celebrates the where each person's heart is importance of the presence of open to all others without.any all people there. Finally, the exception. story drives home the value of What follows ·then.are four recognizing and responding to•- chapters dealing with practical the invitation. issues congregations.face as With this theological they learn to invite, welcome, underpinning, Webb-Mitchell and finally celebrate the describes why churches have been presence of the "unexpected slow to invite and welcome guests." The activities ,. everyone. into our congregation's suggested range from the simple feast. He names the problem-as and .~illy to more intense and one of imag~s. Non-disabled involved interactions; however, people have nurtured the image all .have the bottom line of of disabled· peopl~ as "suffering . creating a .community w_here

63 everyone is seen as contribut- less an e~ploration of the ing. disabilities or·even the medical In committing.ourselves to aspects of AIDS than of the creating a more welcoming aspects of Roman catholicism community, we, as church, will which Kowalewski finds.burden- become more imaginative in some: ' "-Theologically, 'I am learning new capabilities in all critical ~f assertions of aspects of congregational life. hierarchical power in the Roman +. As church we will become more Catholic church over against the patient and tolerant of dif- legitimate place of ·the laity to ferences; we will become more inform the church's morai dis- resilient and less threatened by course." (Previously a practi- the new and different. As cing catholic, the author church, we will become more converted to the Episcopal intimate and supportive. Church during the process of .Paired with his God Plays this study finding there gr.eater Piano Too, Webb·Mitchell has acceptance of his orientation.) written a set of guidebooks for A basic flaw of this study people· interested in building,· is the author's· na~row defini- inviting, welcoming, and tion of the "AIDS Crises." ~IDS accepting faith communities. is conceptualized as a. gay man's (Mary Jane Steinhagen, killer with little effort·to Catholic Charities Advocate, st. connect this modern day plague· Paul, MN). to other populations in other places around the worldn Even Kowalewski, Mark R. All in 1985 the AIDS crisis could be Things to.All People: The defined thus only if its Catholic Church Confronts the encroachments in Africa were AIDS Crises. State University.·of ignored; This narrow definition New York Press, 1994, 167 pp., was not appropriate. for a $14.95, hardco~er. religion as universal in its All Things to All People outreach as the Catholic Church. fol.lows up on.the results of a. In the United States in dissertation which developed out: 1985, 73% of those·~ith the of the author's interest in how diagnosis were gay men while 17% religious institutions "balanced were drug users and only 1% were.· their traditional prohibitions heterosexuals. By last -year the against homosexuality with their. percentage of heterose~ual with desire to care for the sick•••• AIDS had risen to 10% while gay Kowalewski concentrated·on the men con~tituted 44% and drug Los Angeles Archdiocese examin- users 27% of the growing numbers ing selected documents of of those affected. In 1985 Catholic officials, attending women made up only 7%·· of the religious services for gay men, total while ·this number had and interviewing priests who had risen to 18% by 1994. expressed an interest in minis- Those individuals infected tering to AIDS patients at the with the AIDS virus today can· request of their chancellery. expect to live 12 years or more, A glance at the preface of but those extended years bring · this book, published in June assorted "disabilities." How- 1994 although based on data from ever, the -author failed to the mid-1980s, suggests this is address critically relevant 64 questions of how the largest reporting on the interviews with private provider of both medical 32 priests $eem the most germane and social services in the to the topic at hand since- it is United States addresses the at this point that the catholic health and maintenance needs of Church "confronted" the gay men these individuals, no matter of Los Angeles who were dying of their sexual preferences, who AIDS.· These priests, struggling look to Catholic institutions to add heart to the teaching of for assistance. the magisterium, were balancing Kowalewski cites scant the necessity of a consistent information reflective of ethic when pastoral duties rapidly.changing knowledge and called them to comfort and offer sophistication about the redemption. Some dying men were disease. Of the more than 125 angry, others frightened. Some references listed, only 5 are wanted to know if there was a recent. While the author refers place for them in heaven. to a 1992 report on legislative Churches are for sinners and proposals which discriminated those who seek Christ's healing against homosexuals published by blessing find it therem Catholic News Services's Repeatedly this reviewer "Origins," there is no indica- was reminded of an explanation tion this article was motivated of how the two branches of the by concern about "gay bashing." Roman Catholic Church in the On might also expect to find the United States, the National weighty and detailed report of Conference of Catholic Bishops· the international conference on and the U.S. Catholic AIDS held in Vatican City in Conference, operate: The November of 1991 attended by structure is rather like a two thousands of scientists and headed elephant.. It moves very other conc~rned professionals slowly with considerable thought from around the world, but it is and a tremendous need for not included. This gathering, coordination of all its partsa hosted by the Pontifical Council The stability of such a for Pastoral Assistance·to siructure, impervious to shifts Health Care Workers, addressed in popular opinion or current exactly those conflicts which politically correct rhetoric, Kowalewski attempts to may seem an anathema to some. dramatize. To others it may be like the Kowalewski has constructed North Star: a constant a series of chapters on reference point on one's hori- decision-making, power, and the zon, the only steady component structure of the relationship in a shifting environment where between gay men with AIDS, the one is buffeted by sudden shifts Los Angeles priests who serve in the secular wind. them, and the totality of the (Mary Jane Owen, National Church. These passages could Catholic Office for People with serve as boiler plate for Disabilities) exposes revealing that.the magisterium of the hierar'chy "fails" to.respond to tugs upon Battin, Margaret Pabst. its structural integrity. Least Worst Death: Essays in Thos~ sections of this book Bioethics on the End of Life.

65 New York: Oxford University first two sections of the book. Press, 1994i 305 pp., $18.95 A major strength of·Battin's softcover. work lies in her sophisticated grasp of the complexities of. This book brings together a end-of~life medical conditions series of previously published and the intricacies of the interrelated and overlapping American health care system. essays in. bioethics by philo~ Her chapter on euthanasia in the sopher Margaret Pabst Battin. Netherlands nicely forces the Her essays range from 1980 to reader to conclude that any 1994 with half· appearing in the cross-national comparisons must early 1990s. All the essays examine social and existential either presuppose or evaluate meanings, institutionalized the di~tinction between killing practices and·structtires, and and letting die. Battin's title economic statuses. Unlike captures the contradiction Americans, the Dutch have long- patients, practitioners, and term relationships with physi- families face as death occurs cians, full insurance, home-care primarily from degenerative and do not suffer from impa- diseases within an imperfect verishment, racial prejudice, health care sys~em.· The least and-homelessness. Much of ·her worst death is the realistic discussion of suicide is ·aimed ·_ death for us to aspire to have, directly at her interest in not the good and easy "natural" right-to-die decisions for\those death_. Thus Battin. devotes who suffer from terminal dis- conside,rable attention to what . ·eases. However, Battin also ·makes ft>r the least worst death examines why the Chr_istian and· how our health care system opposition to suicide is inuch largely precludes'pursuing the stronger than.that of other_ good death. religions. She shows that The book begins 1 with what Christianity celebrates· choosing Battin proposes as an overriding death by neroism, but does not moral question: How will we all define it as suicide. Hei dis- die? She proposes that right- cussions of the moral dilemmas to-die issues are increasingly about assisting in s~icide are politicized because of changes lucid and useful. Medical-and in 1) the cause of death and mental-health practitioners.will therefore the way we die.a.nd 2) find her discussion of questions the way we think about death •. they should ask in regard to Battin sets the stage for what assisting in suicide worth.the follows by introducing major price-of the book. ideas and event~ about right-to- Despite her.title, Battin;s die issues and the quality of treatment of the contradiction dying in the political context between desiring anc;i.choosing a of the last half century in the good, natural death and gettin~ United States. She.divides the an institutionalized, techno- book into three major sections,· logical.death remains more "Withdrawing and Withholding suggestive than definitive~ She ., Treatment," "Euthanasia," and is aware, however, that some "Suicide." In my view, Battin'~ ways of dying are easier, more main contribution lies in her peaceful, and more conscious ~- detailed discussions.in the than others. Battin·. puts \ 66 forward five major arguments screaming for food and water that have gaiped increased because we have a moral attention and support from. preference for "allowing" babies ethicists and lay persons. They to die rather than ending their include: 1) the distinction misery? between ki~ling and letting die Consistent with most is not so straightforward as the ethicists from philosophy, public imagines, 2) when there Battin looks at right-to-die is a difference between actions dilemmas from an individual of killing and letting die, basis, echoing the medical model questions arise whether, in of the focus on a single patient fact, there is a moral and practitioner. Her emphasis difference, 3) each case needs on a case by case approach to be decided on its own merits, breaks down earlier philoso- 4) the circumstances of American phical reliance on adhe.rence to health care may make recognizing either deontological and utili- physician performed euthanasia tarian ethical positions. Yet more problematic than physician- focusing on the individual assisted suicide, and 5) right · minimizes or leaves out other to die problems will become the important considerations such as major social issue of the next the concerns of those for· whom decade. the patient's life or death is Battin certainly is correct central, the symbolic meanings when she argues that the of quality of life and of level distinction between killing and of civilization in societyo letting die is not straight- Throughout ._the book, Battin forward. Clearly, what with- seems to shift her position holding treatment means is between essays, not just the experientially and morally focus of her gaze. The final relative. Is deciding to take essay written in 1980 takes the an end-stage renal disease position that suicide is a patient off dialysis a form of fundamental right. However, in killing or letting die? Does her 1983 essay she argues that· simply the source of that active euthanasia or suicide in decision, patient rather.than any way need not be among all say, spouse and physician, the alternatives to achieve the result. in whether withdrawing least worst deathm In her 1992 dialysis is killing or letting essay on the risks of abuse with die? When we consider intention voluntary euthanasia, she again as well as source then the avers, -"control over one's death possibilities also include as far as possible is a matter suicide. Battin is also correct of fundamental human right." about the moral difference If her position shifted, then between killing and letting die. reversed or even became more Morally the difference does lie fully articulated over·the in case by case circumstances. years, it would have helped to Allowing someone to die may mean have had short integrating , subjecting that individual to introductions to the chapters, terror and discomfort. For or least to the sections. on example,· is it morally defen- the positive side, Battin sible to force a seriously acknowledges that we already impaired dying baby to die while practice euthanasia commonly,

67 ·but not always morally because followed by death. medical costs drive the action, These concerns aside, not autonomous decision.··.-sheJ . Battin's essays are thoughtful, also honors autonomy as a safe- pertinent, detailed, and well- guard against the slippery written. She has made a solid slope. contribution to the growing Battin argues that right- field of- bioethics. I recommend to-die concerns will become the. her book to anyone who is a - major soc'ial issue of the next · serious student of right-to-die decade - possibly, probably not .. questions in their various They may follow and exemplify, forms. ·however, larger concerns in the (Kathy Charmazi Sonoma United States such -as the rights State University) -of the individual vs the state and pri6rities for national spending. Nor am I.as sanguine Nelkin, Dorothy and M. as Battin that degenerative Susan Lindee. -The DNA Mystigue: diseases in late life will The Gene As a Cultural Icon~ New continue to be the major cause York: w~H. Freeman and Company, of death in the future. Her 1995, 288 pp.~ $22.95 hardcover. analysis is on target now. But Efforts to map and sequence will it h·old for the -future? the e_ntire human genome are now How long? Might it more in progress as part of the Human accurately reflect the si~e of Genome~Project. These efforts, generational cohorts than· coupled with a general increase relative cause of death, per se? in molecular genetics research, Then, too, increasing resistance has made. new information~ and to antibiotics and the develop- misinformation - about human ment of deadly new viruses may genetics widely- available. bring the twenty-first cehtury a Researchers claim to have dis- return of uncontrolled infec- covered genes for alcoholism~ tious diseases. Should the us homosexuality, and obesity; news continue to create world-wide reports descr1be DNA finger- environmental degradation as printing techniques used in well as economic decline of its criminal trials; reporters middle and working classes, promise "designer babies" in our disability from degenerative future. Indeed, we are diseases likely will affect more bombarded daily with images of people more quickly and harshly. DNA related to all aspects of If so, .the death rates of middle ;our 1 i ves. As genetic informa- aged adults would noticeably tion becomes a means for increase. Correspondingly, explaining the root of all economic decline may:well bring manner of human behavior, .the more health care rationing, in idea of culture as separate from .turn, resulting in greater biology is rapidly fijding~ disability and death. Paradoxi- -In The DNA. Mystigue, . cally, my point here echoes Dorothy Nelkin and M. Susan Battin's 1987 contention that Lindee explore popular examples_ , rationing health care to the of this shift in emphasis toward elderly does not simply let them. biological explanations, intro- die, but more likely abandons ' ducing us to· the.DNA of popular them to prolonged illness culture. ·using images and ideas

68 from movies, legal cases, work ethic of jungle freedoms". comics, news, parenting advice (p. 115)a They also cite a literature, and other popular magazine article's feminist cultural forms, they document dismissing pronouncement that as the pervasiveness of the gene as' far as differences between males cultural icon. Popular depic- and females are concerned, "the tions present DNA.as the central old nature-versus-nurture element that makes us who we quibble has finally been settled are; Nelkin and Lindee refer to - and nature now appears to be such depictions as "genetic the winner" (p. 109). They essentialism. 11 Genes supposedly present a tabloid cover's responsible for such a wide homophobic.response to news of range of human attributes as a "gay gene" discovery that violence, femaleness, .fashion proclaims: "Simple injection sense, messiness, obesity, will let gay men turn straight, intelligence, and infidelity doctors report" (p. 122). fill the arena of popular Nelkin and Lindee make a culture. Nelkin and Lindee term compelling case that DNA has this emphasis on the genetic important cultural meaning causes of human behavior distinct from its basic "genetic determinism." biological fact. In charac- The gene as represente~ in· terizing this cultural meaning, popular sources has powerful they surf through the realm of non-biological meaning; it has popular culture to collect the taken on mythical proportions, a sources which are the subjects "secular equivalent of the soul of their studyo However, the - the immortal site of the true authors do not develop any self and the determiner of fate" particular topic in depth and in (p. 193). The authors claim the end the book leaves the that DNA, like the Christian .reader with an overwhelming, soul, appears sacred: "The gene eclectic group of references has become a way to talk about which is neither comprehensive the boundaries of personhood, nor focused. Nonetheless, the the nature of immortality, and array of images and ideas the sacred meaning of life in presented provides a good guide ways that parallel theological to the range of popular forms. narratives" (p. 41). reliant on genetic determinismc As issues of race, gender, . In chapters seven and and sexuality are publicly eight, the authors relate debated, genetic ideas often are genetic determinism to contem- used to define differences and porary cultural emphasis on justify social inequalitiese culpability and blame and Nelkin and Lindee begin to · examine the institutional conse- document this process by quences of genetic determinismG providing examples from popular Readers engaged in disability media sources. For instance, studies will find these chapters they describe a government of particular interest. Disabi- official's blatantly racist lity rights activists have statement that African-Americans responded in various (and some- are "conditioned by 10,000 years times conflicting) ways to· of selective breeding for · research seeking genetic personal combat and the anti- explanations for disabilitieso

69 As Nelkin and Lindee point out, popular depictions of t~e "germ some "hope that the discovery of plasm" (then a description for genes ,for depression and other hereditary material) and public mental conditions will reduce acceptance.of reproductive regu- the social stigma of being lation for "eugenic".purposes. different" (p. 174) •. Some fear~ The authors contend contemporary ~ugenics: identifying genes popular images of genes and.· related to various disabilities, genetics are,strikingly similar or "predispositions" to condi- to earlier depictions of the tions could lead to social germ plasm and they fear that pressure, if not social policy, such depictions of the gene in aimed at discouraging reproduc- contemporary culture make tion by those people identified renewed eugenics likely. As irt as carrying "defective" genes. the late nineteenth and early Some fear that an emphasis on twentieth.centuries, contem- genetic causes ·for disabilities porary "[s]tories of·genetic may u~dermine development of essentialism and biological treatment and social supports determinism facilitate public for people with disabilities. acceptance of the control of For i£ geneti6 "flaws" will be reproduction for the common eliminated, no accommodations good" (p. 171). And Nelkin and need be made for people with Lindee demonstrate that current disabilities. economic and social problems Nelkin and Lindee argue are, at least in part, being that the genetic determinism discussed in terms of genetics. conveyed in popular sources is What is the attraction of most likely to serve as a justi- genetic determinism in contem- fication for already existing porary U.S. society? Nelkin and social inequalities•.In Lindee argue that "the status.of addition, they warn that many the gene - as a deterministic institutions increasingly will agent, a blueprint, a basis for use gehetic traits and "predis- social relations, and a source positions" to make decisions of good and evil - promises a about hiring and firing, teach- reassuring certainty, order, ing, job placement, criminal predictabiiity, and doritrol" (p. conviction, and insurance. The 194). Genetic.explanations are book's justified warning of the. an easy way to deal with diffi-. · dangers of genetic screening and cult social problems. The testing is supported by Nelkin's authors offer several sugges- earlier work with Laurence· tions for DNA's emergence as a Tancredi (1994), which provides cultural icon. First, genetic an overview of the misuses of explanations f'or social problems diagnostic testing in the health can be used to justify social care system, the workplace, inequalities. second, "the schools, and legal institutions. gene" has shown itself to be a A chapter devoted to the flexible concept, serving many U.S. eugenics movement of the different agendas, even simulta- late nineteenth and early neously. Third, genetic expla- ., twentieth centuries warns of the nations echo the enduring (if social, 'implications of genetic somewhat contradictory) "Ameri- determinist thinking demonstra- can values" of looking to.the ting the connections between individual as the location of

70 social problems and seeking the DNA of popular culture moral redemption for events Nelkin and Lindee have so exten- beyond individual control. sively described. Only with Finally, genetic explanations this information could we truly are appealing because they raise begin to understand.the meaning hopes about the possibility of of DNA in contemporary society. treatment for disease. Do scientists and medical These suggestions seem professionals talk about DNA as plausible; however, Nelkin and explanatory·and culpable vis a Lindee offer little evidence to -vis social problems thereby support their proposed explana- reflecting acceptance of the tions. This oversight is part cultural images described in the of a more general problem with DNA Mystique? Do lay people the book. While the authors 1 share the media excitement about effect~vely document the images genetic "discoveries?" Do movie of DNA in contemporary U.S. goers really believe the essen- culture, they.fail to address tialist advertisement for the the influence of these images. film Tainted Blood which claims: The DNA Mystique makes no "Some girls are born smart. Some attempt to gauge the impact of girls are born ·beautiful~ S9me popular images of DNA on how girls are born killers" (repro- individuals make sense of duced in Nelkin and Lindee, p. genetics. Nowhere in the volume 86)? Clearly the frequently is anyone asked about their occurring ideas about and images views on genetics or cultural. of DNA documented in Nelkin and· representations of DNA. We are Lindee's book reflect an impor- left to wonder how parents tant aspect of our culture; respond to the advice literature through studying these represen- which explains children are born tations alone, however, we with certain inalterable abili- cannot know how popular culture ties and tendencies. Has influences popular opinion about parenting changed due to the geneticse ' shift from environmental to Despite its shoitcomings, biological emphases Nelkin and The DNA Mystique provides an Lindee document? Media and important introduction to popular cultural forms do not popular representations of necessarily mirror popular genetics, and the work is parti- opiriion. For example, in her cularly useful to those engaged study of cultural understandings in disability-studies or of immunology, Emily Martin· activismo The book cleverly (1995) describes widely con- connects disparate sources to trasting conceptions of the demonstrate the extent to which body, health, and disease in· ideas about DNA and genetics media images and in the indivi- have infused U.S. culture, and duals she interviewed. While Nelkin and Lindee make a th~ media has continually compelling case for·paying depicted the body as being "at particular attention to a new war" with disease, interviewees cultural emphasis on the expla- overwhelmingly rejected such natory powers afforded DNA in a metaphors for immunityQ world wher~ previous definitions it would be interesting to of identity are coming under explore how people understand question ..

71 References 20002~4242, (.202J 336-6124; FAX· (202) 336-6117. ' Martin, Emily. Flexible October 2-4. Scientific Bodies: Tracking Immunity in Basis of Health Services. American Culture -·From the Days International Conference,· of Polio to the Age of AIDS. London, England. Contact: Sally Boston: Beacon Press, .1994. Welham, Office of Director of Nelkin, Dorothy and Research & Development, NHS Laurence Tancredi. Dangerous Research~ Development, Depart- Diagnostics: The Social Power ment of Health,. Richmond House, of Biological Information. 79 Whitehall, London SWlA 2NS, Chicago: The University of England; 071/210-5556, fax Chicago Press, 1994. 071/210-5868. (Nancy Martin, Department Call for Manuscripts: . of Sociology, Brandeis Univer- Social Thought has been retitled sity, Waltham, MA). Social Thought: The Journal of Religion in tbe Social Services. Jo~eph J. Shields, Associate Announcements Professor in the National Catho- lic School of Social Service, August 15-20. The Associa- will. serve as editor of the tion for the Sociology of journal now to be published by Religion meetings will be held The.Haworth Press, Inc. As.a in Washington, DC. Theme: quarterly, the journal will Community, Globality and publish scholarly papers which Research Paradigm in the focus on topics pertaining- to Sociology of Religion.. Contact: institutional and noninstitu- Peter Beyer,·Program Chair, tional religion in relationship Department for the Study of to the development and delivery Religion, University of Toronto, of social services. The journal 123 st. George Street, Toronto, welcomes papers dealing with Ontario~ Canada M5S 2E8, (416) sectarian and.non-sectarian 978-2395; FAX (416) 978-1610, e- approaches to spirituality and mail: pbeyertepas.utoronto.ca. ethics. The jou~nal is also September 13-16. The1 interested in·philosophically American Psychological Associa- oriented articles which deal tion, in collaboration ~ith the with innovations in professional National Institute for Occupa- '. paradigms., world views, concep- tional Safety and Health tual frameworks, and the philo~ (NIOSH), the ·u.s. Department of .sophy of social work.· Article~ Labor (DOL), and the U.S. Office submitted should be written in of Personnel Man,-agement (OPM), APA style and not exceed 20 will convene the third interdis- pages, exclusive of bibliography ciplinary conference in and tab+es. Contact Joseph J . Washington, DC. Theme: Work, . Shields, Editor, Social Thou~ht: Stress, and Health "95" Creating Journal of Religion in the Healthier~Workplaces. Deadline Social Services, The Catholic for proposals is January 1.3, University of Americ.a,· National 1996 .. Contact: Lynn A. Catholic School of Social· Letourneau, American Psycho- Service, Shahan Hall, Washing- logical Association, 750 First ton, DC 20064, (202) ~19-5458, . Street, NE, Washin·gton , DC FAX ( 202) 319-5093. . r · . 72 The quarterly journal (1) Understanding and Reversing Rehabilitation Education set an Rehabilitation Counseling's August publication date for a Neglect of Spirituality, Henry special double issue (volume 9, ~ccarthy; (2) Mindfulness in •. issues 2/3) on Spirituality, Rehabilitation Practice, Educa- . Disability apd Rehabilitation. tion, and Research, Martha Lentz Single copies can be ordered Walker and Robert Burke Walker; from the publisher for $12.00 (3) The Impact of Differing prepaid, including postage and Belief Systems Between Native handling•. Order from Elliott & . Americans and Their Rehabilita- Fitzpatrick, Inc., Georgia tion Service Providers, Carol Southern Press, P.O.. Box· 1945, Locust; (4) The Energy Model:· A Athens, GA 30603, ( 706) 548-. New Approach to Rehabilitation, 8161, (800) 843-4977, FAX (706) Roberta B. Trieschmann; (5) 546-8417. Choice, Carolyn Vash; Gray· The table of contents for Matter: Cosmological Rehabili- this special issue is as tation, Robert Greg9ry; Book follows: Introduction to the Reviews: Ethics· in rehabilita- Special Issue, Carolyn Vash and tion: A guide for rehabilita- Henry NcCarthy; Part I, Cultural tion professionals by T.L. . and Theoretical Perspectives on Blackwell, W.E. Martin, and ·v.·A. Spirituality, Disability and Scalia (1994), Cynthia Langford; Rehabilitation: (1) Integrating The. power of the mind to heal by Spirituality into Rehabilita- J. Borysenko and M. Borysenko· tion in a Technocratic Society, (1994), Suzanne Meyer. Henry McCarthy; (2) A Theology Notice: Professors Nancy of Anger When Living with ·Eiesland and Don Saliers of Disability, Nancy J. Lane; (3) Candler School of Theology, Metaphysical Influences on Emory University, have received Disability Attitudes, Carolyn funding for a conference and Vash; (4) African Indigenous edited volume on Christian Healing and Cosmology: 'To~ard a liturgy and people with disabi- Philosophy of Ethnorehabilita- lities. They are·seeking tion, Lisa Lopez and Dennis R. persons who are currently work- Maki; (5) Pragmatic Spiritu..;. ing biblical, pastoral, ritual, ality: Enablement in Tradi- and liturgical themes and issues tional Africa, Robert w. in religion and disability. Nicholls; Part II: Living with· .studi~s. Please contact Nancy Disability: Impact of Spiritual Eiesland, Candler School of Views and Values: (1) Buddhism ·Theology, Emory University, and the Spiritually Challenged, Atlanta, GA 30-322; (404) 727- Winfield Clark; (2) To stand on 6322; email [email protected]. Holy Ground: A Jewish Spiritual .Perspective on Disability, Michael Leyy; The ·Defining Light of Vedanta: ·personal Reflec- tions on Spirituality and Disability, ·Margaret A. Nosek; (4) Be Still, Migel Elie; Part III: Rehabilitation Education and Practice: Finding the Place for Spiritual Views and Values:

73

"'\ Society for Disability Studies Zola Scholar Award: The Society for Disability Studies (SOS) is pleased to announce its Irving Kenneth Zola Emerging Scholar Award competition. Papers may be submitted by graduate students and new faculty or researchers,in the area of disability studies. The award includes: certificate of recognition, cash award of $200, place on the program to present the award-winning paper at the 1996 SDS conference, and SDS conference registration fee waiver. Papers will be judged on: (a) significance of the topic, (b) advancement of knowledge, (c) quality of research design, (d) analysis of findings and their implications, (e) organization, and (f) clarity of writing. The submission deadline is: January 8, 1996. Send three (3) copies of your paper to: Gary Kiger, Department of Sociology, Social Work, and Anthropology, Utah State University, Logan UT 84322-0730. \ Phone: (801) 797-1235 (V/TTY). E-mail: [email protected] (questions only). Please send papers only, no theses oi dissertations. The Society: The.Society for Disability Studies is a nonprofit scientific and educational organization. It is a multidisciplinary and' international organization composed of social scientists, scholars in the humanities,. and disability rights advocates concerned with the problems of disabled people in society. The purpose of the Society is to bring together people from,.diverse backgrounds to share ideas and to engage in dialogues that cut across disciplinary backgrounds and substantive concerns. The Society is committed to developing theoretical and.practical knowledge apout disability and to promoting the full and equal participation of persons with disabilities in society. The Society for Disability Studies annual meeting is usually held in June·of each year. Likely themes for disability studies papers or panels are topics such a~ policy, history, sexuality, law, culture, methods, politics, media, literature, pedagogy, gender, self image, cross cultural studies, family, advocacy, activism, and related topics. Further information on membership and the 1996 annual meeting can be obtained by TDD at 617-523-3682 or by voice at 617-523-3429. The mailing address is: Society for Disability studies, _c/o Depart- ment of Public Management,. Suffolk University, Eight Ashburton Place, Boston, MA 02108-2770 USA. Dues for membership in the Society are based on income and are as follows: Less than $15,000 $15.00 $15,000 - $30,000 $25. O·O $30,001 - $45,000 $35.00 Over $45,000 $45.00

74 Subscription information: Disability Studies Quarterly comes out four tim~s a year. Each volume is the same as a calendar year. Although the Quarterly is associated with the Society for Disability studies, the subscription price for the Quarterly is not included in the dues for the society. However, members of the society are. entitled to a $5.00 reduction in the Quarterly subscription priceo The prices for a one year subscription a~e as follows. Individual $35.00 Institution $45.00 student $20.00 Low Income what you can afford International $50.00* l *The price for international subscriptions excludes Canada and Mexico. Subscription prices for Canada are the same as for the: US even though the mailing.costs are higher than domestic rates. International subscriptions can be.obtained:by the exchange of newsletters and/or publications relating to disability. Please specify if you wish to receive the Quarterly on disk, in Braille, on tape, or py email over the Internet. There is no additional cost for an alternative format.

SPECIAL NOTICE Since Irv Zola died many persons wondered about the future of the Quarterly. Disability studies Quarterly will continge. For the calendar year 1996 (and longer if necessary) I will be the editor of the Quarterly. The Steering Committee feels confident that subscription and other income will provide sufficient funds to pay fo~ its publication. We are receiving some support from Suffolk University, but we need much more. · Please consider making a donation to ensure that the.Quarterly· will continue during this transition time. ·For persons (or · organizations) who can afford large contributions,· please make one now. All donations are welcome,. however. Make. the check payable to Disability studies Quarterly and write on it DONATION. Send it to David Pfeiffer, Department of Public Management, Suf::eolk University, Eight Ashburton Place, Boston, MA 02108-2770, USA. Thank you. David Pfeiffer, Editor

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75 Table of Contents

Introductory Essay Fred Rafferty 2

Focus

Religion and Disability Studies: Thoughts·on the Status and Future of an Emerging Dialogue Nancy L. Eiesland 4

Pastoral Counselors/Religious Professionals and People with Disabilities William A. Blair and Dana Davidson Blair 10

Strategies of Religious Education and People with Disabilities Brett Webb-Mitchell 12

Research Paper

Spirituality in Children Whose Parents Have Multiple Sclerosis Karen A. Blackford 14

Perspectives

Imagining a History that Illuminates Disability and Spirituality w. Andrew Achenbaum 22 · Disability, Spirituality, and Religion: An Anthropological Perspective Nora Ellen Groce 23

Religion, Spirituality and Disability: A Health Services Research Agenda Robert Enteen 25

Disability studies Among the Asian Religions and Philosophies M. Miles 27

Midsection: Issues

The Church and Disability: A Tri~ity of Issues Helen R. Betenbaugh 32

Conference on Spirituality and Disability Held by NIH Margaret A. Nosek 34

Disturbances from Afield: Mind Over Matter Does Not Keep Body and Soul Together Adele B. Mccollum 37

76 Disability from the Point of View of Religion and Spirituality Jane _Hurst 40 Embracing Those Unwelcomed: The Role of Christian Initiation in - Excluding Persons with Disabilities from Participation in Public Worship and Community Life Valerie c. Stiteler 44 Viewing Christian Theology Through Evolving Dis.ability Lenses Mary Jane Owen 50 Spirituality and Religiosity: Thoughts from .a Rehabilitation Perspective Nancy G. Kutner 52 Religion and Disability: A New Wave Marilyn E. Bishop. 53 Missing Characters in a Gospel Story Mary Jane Owen 56 What Does ADA Mean to U.S. Churches · Mary Jane Owen 58 Resources 59 Booknotes 60 Announcements 72 society for Disability studies 74 .Special Notice 75

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