Disability Studies Quarterly Spring 2003, Volume 23, No. 2 pages 29-41 <www.dsq-sds.org> Copyright 2003 by the Society for Disability Studies |
Resilience in Survivors of Traumatic Limb Loss Beth Sperber Richie, Ph.D. |
Keywords: Trauma, recovery, life stages Abstract
Landmine injuries are one of the leading causes of limb amputations in post conflict countries. Landmine Survivors Network (LSN) empowers individual survivors, families and communities affected by landmines to recover from trauma, fulfill their rights, and reclaim their lives. To assist in these goals, LSN conducted a study to help determine what creates a 'successful' survivor that is, one who overcomes trauma and is psychologically healthy. This exploratory interview study examined the impact of environmental risk factors, coping strategies, and resilience characteristics of limb loss survivors across differing cultural, societal and economic backgrounds. Tens of millions of people with disabilities around the world are systematically denied access to adequate health care, housing, education, social contact, or the means to earn an income. This situation has little to do with the physical limitations of an amputation or other disability, and has everything to do with poor health care, societal barriers, negative attitudes, and avoidance reactions to difference. The social, political, and personal dimensions of an individual's life constitute the social psychological factors that affect recovery processes during and after medical treatment. Social-psychological factors '...underlie the way disability as a value loss is perceived and reacted to by other people, as well as by the self' (Wright, 1983, p6). Landmine survivors who have lost limbs cope with their injuries in myriad ways. Certainly, the psychological factors that influence recovery are significant, and have important implications for acceptance or non acceptance of the disability itself. However, the environmental factors (e.g., societal access, societal perception/attitudes) also play a significant role in the recovery process. In our study we found there are several factors that cause a trauma survivor to be more resilient, including:
LSN's research indicates that the impact of these factors, positive or negative, varies throughout an individual survivor's life. Methodology Trained interviewers queried 89 participants from seven countries (Bosnia, Ethiopia, Eritrea, Jordan, El Salvador, Mozambique, and the United States). An open ended interview format was used in the six landmine affected countries, and a semi-structured protocol was used in the United States. Of the 89 participants, 68 were people with limb loss, 12 were immediate family members of people with limb loss, and nine were experienced service providers (two of whom were also people with limb loss). Participants ranged in age, gender, socio economic status, urban rural location, ethnicity, time since injury, and degree of rehabilitation at the time of interview. Indigenous LSN social workers conducted interviews outside the United States and USA trained psychologists and one peer counselor conducted the USA interviews. LSN Network staff identified potential participants in order to obtain a diverse sample in each mine affected country. The USA sample was drawn from participants at a national amputee conference and from amputee support groups. Questions were open ended to ensure the maximum range of responses. The use of local interviewers in all countries ensured both the requisite cultural knowledge and language fluency necessary for producing in depth interviews. Participants in mine affected countries were asked three specific questions
as prompts: a) Please tell me the story of your landmine accident/limb
loss/amputation; b) What has been helpful in your recovery? c) What has
not been helpful in your recovery? The USA sample was asked similar questions
as well as specific questions on their coping strategies, social support,
body image, and personality. Results and discussion A six factor model of recovery in limb loss survivors emerged from the participants' narratives. The six factors that have an impact on an individual's experience of disability are:
As the following discussion shows, these recovery factors interact with the various developmental challenges normally faced at different life stages (cf. Erikson's 1964 life span model; McAdams, 2000) to produce different recovery needs and outcomes. Individual through the life course People who recover psychologically from the traumatic accident move from pragmatic acceptance to what we call acceptance with resilience. They accept the limb loss, and express a desire to live and to make what happened to them into something good, to derive meaning from the traumatic event. They often have the perspective that things could have been worse. They do not define themselves by their amputation; it is a part of who they are, but not all. They perceive and describe themselves as 'normal' (despite the negative messages they get from society about their disability), and they often describe an identity shift so they now feel they benefit from the support of, and feel connected to, other amputees. Often they describe the amputation as the start of a new life and that they feel a desire to be altruistic. This generally happens due to good physical health, psychological well being, and social and economic integration. In contrast, people who do not recover psychologically from the traumatic accident move from pragmatic acceptance to what we term acceptance with resignation. They are resigned to the limb loss; feel depressed and bad about themselves. They have a negative outlook on life, and describe themselves as feeling abnormal due to the limb loss, disconnected from friends and family, and unsettled. Depending on the immediate family context, the amputee could remain isolated, and have delayed social and economic integration. This generally happens due to a lack of social support, the poor physical condition of the individual and/or poverty. The participants vary in how they accept the limb loss, and some have experienced all of the different kinds of acceptance. Type of acceptance interacts with the individual's age and their current developmental stage, tasks, and responsibilities. At different life stages the means through which a person reaches acceptance and recovery also vary. In childhood, some of the issues the individual needs to resolve include
trust, independence, and competence. A landmine injury can impact a child's
ability to trust and feel secure in a context that includes the possibility
of re injury. Some of the family members interviewed describe how difficult
it is to watch their child struggle to regain their independence after
the injury, but it is clear that the family needs to allow the child to
develop independence and to take initiative, to allow for a full recovery.
In young adulthood, the psychosocial issue to address is whether you will form intimate relationships or whether you will become isolated. This is particularly at issue for our sample, as the question of whether they will find love and marriage and have the opportunity to have children is paramount for many. This appeared a more significant issue for the young women in our sample than for the young men. Many of the women are resigned to being 'unmarriageable' as a result of the injury, which has a significant effect on their ability to accept the limb loss positively, and to recover. When people have left young adulthood, have made their decisions regarding family and intimate relationships, they enter mature adulthood, where the main issue or task they face is whether they will be productive or generative. Will they create something worthwhile and leave something behind them when they are gone? This stage is associated with building and providing for families, having productive work, altruism to make the world a better place, and a change in perspective on one's place in society. Many of our survivors describe their need to be productive in order to feel 'normal' and a contributing member of their family and community. Those who are able to fulfill the life roles they have hoped for themselves are more likely to accept limb loss in a positive way. In old age, the individual is focused on looking back at his/her life, gleaning the wisdom that comes with age and sharing that wisdom with family and community. When societal attitudes toward people with disabilities prevent that opportunity, it is significantly more difficult for older people with acquired disabilities to accept those disabilities with resilience. Treatment through the life course For children, appropriate mobility equipment is a particular issue since
children need more frequent care and prosthetic change as they grow. This
issue continues for adolescents, but the additional concern in this population
is the cost of medical care and appropriate mobility equipment. Many adolescents
at the time of injury are very concerned about the financial impact their
injury may have on their family. Family through the life course The larger community functions as the family in some countries. For example, in Eritrea and Ethiopia the survivors describe a very strong sense of community where individuals in the community act as the family normally would. Community support in these two countries includes material and physical help such as farming, harvesting, the teaching of a vocation; as well as the provision of food and entertainment. There is also emotional and psychological help, including moral support, comfort, encouragement, the provision of counsel, and the feeling of love and belonging in a community. For children and usually for adolescents, the family is crucially important
for providing basic economic necessities, adequate medical care, social
support, and the lens through which society's attitudes toward people
with disabilities are transmitted or understood by the survivor. Whether
or not a child has a full recovery is dependent upon the family's ability
to provide physically and emotionally.
Throughout our sample, but particularly among more mature adults, it is clear that family can have both positive and negative impacts on recovery. On the positive side, family provides support (both financial and emotional) and dependents (both elders and children) provide the motivation for many people to live, as expressed by a Bosnian survivor:
On the negative side, our participants worry most about the potentially harmful impact of the limb loss on their families; with their biggest fear that of becoming a burden. Elders face a decline in status in the family. Elder parents expect their children to take care of them, but because their dependency is so high, offspring cannot address all their needs while taking care of their own families. Spouses often reject the elder amputees, creating an isolated, desperate social situation. For example, elders in Jordan feel depressed, angry and hopeless. Cultural expectations would be that family would take care of the elders, but one older Jordanian woman felt her children and husband ignored her, which led to a decline in her mental health including isolation and depression. Social support through the life course One survivor, from Eritrea, who was six at the time of injury, describes the importance of social support, which, in childhood, comes primarily from family and friends:
The focus on body image and peer acceptance among adolescents means that social support from same age peers is particularly important as well as mobility equipment that allows the amputee to participate in age appropriate social activities. Those caring for young amputees need to focus on social relations, and
helping the survivor acquire a positive self-image. A service provider
in Jordan suggests that adolescents prefer a very good looking, well fitting
prosthesis to avoid peer discrimination. This is particularly the case
in teenage years, when the primary concerns are social acceptance and
body image. spouse or romantic partner are particularly important. Those survivors who have positive social relationships are better able to weather the emotional difficulties of limb loss. Among older adults, problems with mobility make maintaining or establishing social relationships more difficult. Economic situation through the life course
This economic situation is also influenced by whether the survivor is a war veteran or a civilian. In each country, war veterans normally get better treatment than civilians, due to institutional medical, economic and social support systems. For child survivors, family is the main source for economic necessities.
For recovering adolescent survivors, family again is significant in ensuring
basic economic necessities in the present, but one's identity at this
age includes one's role in the working world, so the ability to provide
for oneself and become a productive member of society is a particular
concern for adolescents with limb loss. For the mature adults in our sample, the idea of being 'productive' and contributing to the world at large is paramount, and access to productive endeavors (in or outside of the paid workforce) becomes an important focus. 'To be constantly and consistently denied the opportunity to work, to make a material contribution to the well being of society is to be positioned as not being fully human, indeed in my view, is the root cause of us being labeled as "other"' (Oliver, 1999). One survivor in Ethiopia describes his feeling about losing a limb during what should be his most productive period:
In contrast, an American survivor describes his experience of recognizing he could still be productive after a war injury. Still on crutches and unable to walk he is told by a General: 'Let me know when you're ready, there's still a lot to do, I've got a big job for you.' He turned on his heel and walked away. And, that makes a big difference, you know, that kind of, what do we call it, instant rehabilitation. Clearly the economic situation of the individual, the number of dependents s/he has, the social support available to him/her, the availability of appropriate mobility equipment, and societal attitudes toward disability all contribute to the ability to be productive during this life stage, as well as in old age when people are often increasingly dependent on their family for basic economic necessities, mobility and medical care. Society through the life course
One El Salvadoran survivor was 11 at the time of his injury, but when given treatment in the United States was warned by a doctor that his adolescent years would be difficult for him since women would not be interested in him romantically. Here, in a fascinating interaction of societal attitudes and medical treatment, the survivor was provided with excellent medical care, rehabilitation and adequate mobility equipment, but at the same time his fundamental identity of potential romantic partner was challenged, causing him to question whether he would be able to fulfill the role of husband and father. For adolescents, negative societal attitudes are particularly damaging when they have an impact on peer acceptance. Those who have adequate social support are very grateful for the opportunity to be with people (family or friends) who treat them 'normally.' Among the young adults in our sample, the issue of marriage is paramount. According to the Jordanian service provider, women with limb loss tend to foreclose traditional expectations of marriage and children more than men. Probably due to societal attitudes, amputee women tend to see themselves as abnormal and unmarriageable. Men, on the other hand, do not necessarily lose the expectation that they will marry. One Jordanian survivor, who was a 20 year old unmarried man at the time of our interview, describes Jordanian societal expectations that any young non-disabled male be productive, marry, and have a family, but there are no such expectations for a man with a disability. However, this survivor still hopes to work, find a wife, and have children. His fear is that society's discrimination will render him unemployable, which will make him a poor candidate for marriage, since no one will want to marry a man who cannot provide for his family. At the time of the interview, the survivor was actively fighting against this social discrimination. He was not going to accept society's view of disability. He was seeking a prosthesis, which would assist him in finding work. With work, he was confident he could offer a woman a secure home. When society discounts the contribution of wisdom from an older person with a disability despite their cultural role as an elder in the community, he or she can experience bitter despair. The opportunity to be a productive member of society is based almost entirely on maintaining status in the community as an elder. For people with disabilities this status of age may be discounted due to negative societal attitudes toward disability, virtually eliminating the opportunity to contribute to family or community. Summary and conclusions The recovery experiences of limb loss survivors vary greatly based on their stage in the life course. As a result, programs intended to facilitate recovery need to be comprehensive and address the individual's stage specific physical, psychological, economic and social needs within the context of family, community, and the socio cultural environment at large. As people develop throughout the lifespan, they go from being economically, physically, and emotionally dependent on parents to becoming self reliant and independent, then becoming increasingly dependent on their adult children. If this cycle is allowed to continue for the survivor without significant, long-term interruption, the survivor has a chance to make social and economic integration possible. Physical and psychological health are precursors to developing intimate relationships, finding work, maintaining or establishing social relationships, and the ability to integrate into society regardless of public attitudes toward disability. The opportunity to be a productive member of society also varies at different life stages. As a child and adolescent your task is to prepare to be a fully functioning adult. As a young or mature adult your tasks are to have a family and to provide for them. As an elder your tasks are to provide wisdom to family and community. At each stage, the six recovery factors interact to make it more or less possible for a survivor to be productive and contribute to the family, community and society. Attitudes toward people with disabilities also impact recovery at all ages. Family appears to function as a buffer against negative societal attitudes for children with disabilities. As survivors move through adolescence and young adulthood the existence or lack of intimate relationships can reflect societal and cultural attitudes toward disability. In adulthood, societal attitudes can impact the ability to find employment and provide for one's family. In old age, societal attitudes appear to have a negative impact on the elders' status in the community, affecting the mental health of older amputees. Research is needed to investigate further the interrelationships between current life stage, age at the time of limb loss, and recovery factors. In addition, studying societal attitudes toward disability and the impact of limb loss on becoming a productive member of society will enhance the development of age appropriate, integrated, and survivor centered rehabilitation and trauma recovery programs.
References Corbin, J., and Strauss, A. (1990) Basics of Qualitative Research: Grounded theory procedures and techniques. London, Sage Publications. Erikson, E. H. (1964) Childhood and Society (2d ed.), New York, Norton. Glaser, B., and Strauss, A. (1967) Discovery of grounded theory: Strategies for qualitative research, Aldine de Gruyter. McAdams, D.P. (2000) The Person: An Integrated Introduction to Personality Psychology, 3rd Edition, London, John Wiley & Sons. Oliver, M. (1999) Disabled people and the inclusive society: or the times they really are changing. Public lecture, Professor of Disability Studies, University of Greenwich, April 27, 1999. Wright, A. (1983) Physical disability, a psychosocial approach. New York, Harper and Row. |
Disability Studies Quarterly (DSQ) is the journal of the Society for Disability Studies (SDS). It is a multidisciplinary and international journal of interest to social scientists, scholars in the humanities and arts, disability rights advocates, and others concerned with the issues of people with disabilities. It represents the full range of methods, epistemologies, perspectives, and content that the field of disability studies embraces. DSQ is committed to developing theoretical and practical knowledge about disability and to promoting the full and equal participation of persons with disabilities in society. (ISSN: 1041-5718; eISSN: 2159-8371)