The aids memorial quilt: Personal and therapeutic uses

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  • Pergamon

    The Arts in Psychotherapy, Vol. 24, No. 5, 431-438, 1997 Copyright 0 1997 Elsevier Science Ltd Printed in the USA. All rights reserved

    0197-4556/97 $17.00 + .oo

    PI1 SO197-4556(97)00019-l

    THE AIDS MEMORIAL QUILT: PERSONAL AND THERAPEUTIC USES

    SHOSHANA D. KEREWSKY, MA*

    On April 21, 1994, my friend, Frederic, died of MAI, a complication of AIDS. Frederic was a gifted musician, singer, actor and educator. Vital and stub- born to the end, he was planning a cross-country train trip and directing a small a capella ensemble the day before he died at the age of 33.

    Frederic had been diagnosed with AIDS in Decem- ber, 1991. Shortly thereafter, he suggested that he, I and other classmates gather to make an AIDS Memo- rial Quilt panel to commemorate another college friend, Mark, who had died of AIDS earlier that year. Some of the classmates who joined us to make Marks panel knew that Frederic had AIDS; others did not. In the winter of 1993, I interviewed Frederic about his experience of making Marks panel and the ways in which that process had helped him to address the unresolved issues in their relationship. Frederic touched on other important outcomes of this project, including coming to terms with his own mortality.

    Although Frederics activities with and relation- ship to the AIDS Memorial Quilt do not constitute an art therapy intervention, Frederics story, explored be- low, has important implications for art therapists and other providers who work with people with HIV and AIDS. Frederics observations illustrate the healing potential of working on the Quilt for people grieving the loss of a loved one and for those grappling with HIV in their own lives. The Quilt not only provides

    individual opportunities for clarifying and resolving the issues raised by AIDS, but also facilitates the mourners joining with a larger community,

    To provide a context for Frederics story, I will first briefly review relevant background material on AIDS, death and dying, expressive arts therapies and the NAMES Project AIDS Memorial Quilt. I will then turn to the Quilts potential utility and significance in the grieving process and finally to Frederics story to integrate and personalize these processes.

    AIDS in the United States

    In June, 1995, the Centers for Disease Control re- ported 476,899 documented cases of AIDS in the United States (Centers for Disease Control National AIDS Hotline, telephone communication, November 15, 1995). The Centers estimate of one million per- sons infected with HIV means that one in 250 Ameri- cans is presently infected with HIV. Although these numbers are alarmingly high, AIDS is surrounded by silence and secrecy. As Susan Sontag (1989) suc- cinctly explained in AIDS and Its Metaphors:

    With AIDS, the shame [of having the illness] is linked to an imputation of guilt; and the scandal is not at all obscure . . . . Indeed, to get AIDS is precisely to be revealed, in the majority of

    *Shoshana Kerewsky is a doctoral candidate at Antioch New England Graduate School. Her dissertation research concerns HIV+ gay men who make their own panels for the AIDS Memorial Quilt. She thanks the friends and family of Frederic Evans, Jack Potter, the NAMES Project Rhode Island Chapter, Beacon Hill and Westport Friends Meetings, President Alfred Bloom of Swarthmore College, and Deborah Rozelle, MPS, ATR, CCMHC for their support and assistance. Of the people referred to in this article, both Frederic and Jack asked that their names be used. Although the creation of Marks panel (described below) was a public event, his name has been changed. None of these men was a client of the author and the interactions described did not occur in a clinical context.

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  • 432 SHOSHANA D. KEREWSKY

    [Western] cases so far, as a member of a certain risk group, a community of pariahs. The ill- ness flushes out an identity that might have re- mained hidden from neighbors, job-mates, fam- ily, friends. (pp. 24-25)

    Because of this shame, many people with AIDS keep their status a secret from even friends and fam- ily. The person with AIDS who reveals himself2 risks losing the very relationships and support he needs in order to grapple with a life-threatening illness (Herek & Glunt, 1988). Paradoxically, he may feel that he has to prevent intimacy in order to preserve his relation- ships. Many people with AIDS feel profoundly iso- lated and unable to come to terms with their illness and mortality.

    Friends, family and partners of people with AIDS may also experience difficulty grieving and resolving their relationship with the person with AIDS. If he did not inform them of his illness, they may have not only his death but his secrets to come to terms with. They may also have strong reactions to not having been taken into his confidence. Even if they knew about the illness prior to the death, they may fear the same isolation and stigma the person with AIDS fears. If they themselves are HIV+, their feelings may well be complicated by fear about their own illness or they may experience survivor guilt. If they have not been tested for HIV and have lost a partner, they must struggle with their own fear of infection (Gilbert, 1988, p. 42).

    HIV+, the drain on both financial and emotional re- sources that multiple deaths create (ODonnell, 1992) and U.S. cultures perception of death as abnormal rather than as part of the life cycle (ODonnell, 1992). Further complicating the issue, contemporary U.S. culture emphasizes brief bereavement (Stroebe, Ger- gen, Gergen & Stroebe, 1992). If the process of com- ing to terms with the death is slowed by any of the above factors, the grieving person may find himself further out of step with the cultures habits and may be seen as morbidly preoccupied or even mentally ill. Thus, as Stroebe et al. describe our current practices, Relevant counseling . . . [is] designed to help achieve [the] process of withdrawal. Those who retain ties are considered maladjusted (p. 1206). Adding to the complexity of the grief process for HIV+ people is that most have suffered the loss of numerous friends and family members from HIV/AIDS (Bartlett & Finkbeiner, 1993, pp. 261-262; Kalichman, 1995, p. 113; ODonnell, 1992, p. 110; Siegel & Krauss, 1994, p. 27). Thus, the very people whose loss they are mourning are those community members who would otherwise have constituted the social support system. In other words, much of the grief work professionals engage in may fail to account for all the variables that make up the process of coming to terms with death by AIDS.

    Even when it is possible to grieve in culturally- sanctioned ways, the feelings of loss may not be easy to resolve. Judith Herman (1992), addressing trau- matic loss, wrote:

    Issues of Death and Dying

    Much has been written about the process of com- ing to terms with death and dying (e.g., Kiibler-Ross, 1969). The literature of counseling provides direct applications of these models to people with AIDS, expressing them as stages of grief or as pervasive themes that arise during the grief work (e.g., Barret, 1989; Doubleday, 1987; Hess, 1988; Nichols, 1987). This literature will only be alluded to here, while con- siderations more specific to people with AIDS and their families and friends are touched upon briefly.

    Those who are physically harmed lose . . . their sense of bodily integrity. And those who lose important people in their lives face a new void in their relationships with friends, family, or community. Traumatic losses rupture the ordi- nary sequence of generations and defy the or- dinary social conventions of bereavement. The telling of the trauma story thus inevitably plunges the survivor into profound grief. Since so many of the losses are invisible or unrecog- nized, the customary rituals of mourning pro- vide little consolation. (p. 188)

    AIDS-specific issues include not only dealing with the stigma associated with the disease, but also the relative youth of this population, the number of people one knows who have already died or are

    Though Herman wrote primarily about survivors of physical or sexual trauma, her description is cogent for those mourning a death by AIDS as well. Herman

    1 am using a generic masculine pronoun because the case history that follows is that of a male.

  • AIDS MEMORIAL QUILT 433

    saw recovery from these traumata as a process that potentially may take many years. This trauma para- digm may be helpful to bear in mind as we mourn or assist others in their mourning. Certainly the shame and secrecy associated with AIDS, together with the attitude that the person with the disease is somehow to blame for it (Sontag, 1989, p. 25), the social isolation, the lack of a cure and other factors described above can make a diagnosis of and death by AIDS traumatic for people with AIDS and their families and friends.

    Though Hermans language is extreme (inevi- table, for example), it would behoove therapists and other providers to find alternatives to talking therapy for clients whose grief is so profound that its verbal expression causes unbearable distress. In some cases, this may take the form of providing direct interven- tion. In others, however, the therapists role may be to affirm the complexity and difficulty of experiencing and expressing sustained grief in a quick-fix culture. Under these circumstances the therapist may elect to educate the client about non-clinical options for grief work.

    Ideally, this extra-therapeutic activity would not only allow the mourner to express his feelings and resolve his grief, but would also address the AIDS- related factors of shame and secrecy. He would be able to proceed at his own pace and participate in creating a ritual meaningful to himself. Finally, the intervention would allow the client to decrease his isolation and connect or re-engage with a supportive community. All of these considerations may be met through work on the AIDS Memorial Quilt, which, though not a therapeutic intervention per se, may play a valuable ancillary role in conjunction with counsel- ing, therapy or other non-clinical activities intended to relieve the distress associated with the loss, grief and isolation of AIDS deaths.

    Expressive Arts Therapy: An Overview of Relevant Literature

    Before describing the Quilt and its relevance to the grieving process, a few words about expressive art therapy are in order. Although the Quilt is a commu- nity art project, not an art therapy intervention, it serves many of the functions associated with expres- sive therapies. The literature on this subject illumi- nates the Quilts healing capacities.

    Art therapy is described functionally as the use of art and other visual media in a therapeutic or treat- ment setting (Dalley, 1984, pp. xi-xii) and philo-

    sophically as clients [using] the particular creative medium of art expression to advance the larger cre- ativity of making meaningful their own lives (Wade- son, 1980, p. 5). The art product, which is non-verbal, allows for the expression of unconscious and unclear feelings (Dalley, pp. xii-xiii) with less repression and mediation than does a verbal product (Wadeson, p. 9). It permits the client to examine and recognize his feelings and thoughts while remaining apart from them (Wadeson, p. 10) and perhaps rendering these feelings and experiences less threatening (Dalley, p. xi). Thus, art therapy can help the client make sense of his experience and also distance himself from it if that is initially necessary. Indeed, Nichols (1987) warns that clinicians should not attempt to dislodge the cli- ents initial denial, which he sees as serving a useful purpose, but rather let the patient have peace of mind (Nichols, p. 138).

    Other useful features of art therapy include both process and product. The act of creating something communicative and personal may help the client make meaning out of his experience. It may help the client [get] out of [himlself, know himself better or ex- perience pleasure (Wadeson, 1980, p. 6). Dalley (1984) commented that although perhaps initiated by a therapist, this activity is spontaneous, self- motivated, and also self-sustaining as the person be- comes absorbed in what he or she is doing (p. xiv). The art activity in and of itself thus has the potential to help the client feel better even as he expresses potentially painful thoughts and feelings.

    The art product is both personal and communica- tive. It is symbolic and may or may not initially be intelligible to the client, the therapist or another viewer. An important aspect of the art therapy is to bridge this communicative gap. This is often done by verbally exploring the products meaning for the cli- ent. The artwork may also be shared with others by the client, either in a therapeutic group setting or as an individual gesture. This facilitates the clients ex- pression of his experience and decreases his sense of isolation.

    Finally, and more broadly, art can be a means of modifying cultural and social norms (Dalley, 1984, p. xvii). Those mourning a death by AIDS may be unable or unwilling to use the cultures traditional rituals. The use of art may allow individuals and dis- enfranchised communities to create grief rituals that serve the same purposes as those of the dominant culture. More ambitiously, the new rituals may draw attention to the assumptions and exclusions that un-

  • 434 SHOSHANA D. KEREWSKY

    derlie the dominant ritual or even serve to modify it over time. The AIDS Memorial Quilt is one such artwork.3

    The NAMES Project AIDS Memorial Quilt

    The AIDS Memorial Quilt is sponsored by the NAMES Project Foundation. It was begun in 1987 and the Project articulates its mission as follows:

    1. to illustrate the enormity of the AIDS epidemic by showing the humanity behind the statistics,

    2. to provide a positive and creative means of ex- pression for those whose lives have been touched by the epidemic, and

    3. to raise vital funds and encourage support for people with HIV/AIDS and their loved ones (A Display of the NAMES Project AIDS Memorial Quilt, 1992, p. 3).

    All of these goals, but particularly the second, serve to encourage communication, increase a sense of community and create a new ritual for mourning and testimony.

    The Quilt is composed of individual 3 x 6 foot panels, each commemorating a person who has died of AIDS. These are sewn into 12 x 12s composed of eight panels each. These in turn are joined by sashing, which serves as a walkway between 12 x 12s. The sashing is temporary so that 12 x 12s can be recon- nected in different configurations depending upon the requirements of the display of which they will be part. In the NAMES Projects last projection, the Quilt was expected to include about 45,000 panels by October, 1996 (Milham, 199511996, p. 3), a huge number which nonetheless represents only a small fraction of those who have died of AIDS in the United States alone. Photographs and further discussion of the Quilt may be found in...

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