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The disability paradox: high quality of life against all odds
Gary L. Albrecht *, Patrick J. Devlieger
University of Illinois at Chicago, School of Public Health, 2035 West Taylor Street, Chicago, IL 60612, USA
Abstract
This paper builds on the work of Sol Levine to examine a disability paradox: Why do many people with serious
and persistent disabilities report that they experience a good or excellent quality of life when to most external observers these individuals seem to live an undesirable daily existence? The paper uses a qualitative approach to develop an explanation of this paradox using semi-structured interviews with 153 persons with disabilities. 54.3% of
the respondents with moderate to serious disabilities reported having an excellent or good quality of life con®rming the existence of the disability paradox. Analysis of the interviews reveals that for both those who report that they have a good and those who say they have a poor quality of life, quality of life is dependent upon ®nding a balance
between body, mind and spirit in the self and on establishing and maintaining an harmonious set of relationships within the person's social context and external environment. A theoretical framework is developed to express these relationships. The ®ndings are discussed for those with and without disabilities and directions are given for future
research. # 1999 Elsevier Science Ltd. All rights reserved.
Keywords: Disability; Quality of life; Body; Mind; Spirituality
1. Introduction
Sol Levine was an engaging scholar who thrived on the intellectual ferment generated in the sociological study of health behavior, the activities of medical pro-
fessionals and the problems of medical care delivery. He served as a mentor and colleague to senior scho- lars, policy makers and students alike. He continually
surprised and stimulated others by asking the deeper
question or by pointing to an area of research that was waiting to be explored. Sol Levine left a legacy of looking at the big picture, taking interest in those who were disadvantaged and disenfranchised and focusing
on health related quality of life (Levine et al., 1983; Lerner and Levine, 1994; Lerner et al. 1994; Amick et al., 1995). He urged colleagues to follow the lead of
Antonovsky (1979; 1993) in moving beyond the con- ®nes of the classic biomedical model of illness ``...to address issues of salutogenesis rather than pathogen-
esis''; to examine the factors that account for health and well-being (Levine, 1987, 3). According to Antonovsky (1987, xii±xiii), a salutogenic orientation
directs the researcher to explain how people manage well despite adverse health experiences. Taking such an approach, we decided to examine a disability paradox in this paper dedicated to Sol Levine's memory. The
apparent paradox is: Why do many people with serious and persistent disabilities report that they ex- perience a good or excellent quality of life when to
most external observers these people seem to live an undesirable daily existence
1 ?
Social Science & Medicine 48 (1999) 977±988
0277-9536/99/$ - see front matter # 1999 Elsevier Science Ltd. All rights reserved. PII: S0277-9536(98)00411-0
PERGAMON
* Corresponding author. Fax: +1-312-996-5356; e-mail: gar-
[email protected]. 1 In this paper we use the descriptive phrase, `people with
disabilities'. We recognize that other scholars have di�erent
terminological preferences based on theory, the intent of the
research and national and cultural di�erences. For example,
in the United States, Britain and France, some prefer `people
with disabilities', while others argue for `people with impair-
ments', `disabled people', or `les handicape es'. Some disability
activists might argue, for example, that the question of how
and why people report a good quality of life in the presence
of `disability' may be in part a function of the terminology. If
the phrase is changed to `people with impairments', for
example, the question of disability is shifted to societal re-
sponses. This argument corresponds with the social model of
The common understanding of a good quality of life
implies being in good health and experiencing subjec-
tive well-being and life satisfaction (Goode, 1994).
Conversely, one can argue that if people have disabil-
ities, they cannot be considered to be in good health
nor possess a high level of life satisfaction. People with
disabilities are assumed to be limited in function and
role performance and quite possibly stigmatized and
underprivileged (Brown et al., 1994). Kottke (1982,
80), a distinguished expert in rehabilitation medicine,
expresses this view when he states that ``the disabled
patient has a greater problem in achieving a satisfac-
tory quality of life. He has lost, or possibly never had,
the physical capacity for the necessary responses to
establish and maintain the relationships, interactions,
and participation that healthy persons have''. Research
evidence, however, presents a more complex picture. In
practice, the anomaly is that patients' perceptions of
personal health, well-being and life satisfaction are
often discordant with their objective health status and
disability (Albrecht and Higgins, 1977; Albrecht,
1994).
This paper examines the disability paradox. The
paper uses a qualitative approach to develop an expla-
nation of this phenomenon by using semi-structured
interviews of persons with disabilities. Respondents are
asked about their health and disability status, quality
of life, and about the seeming contradiction between
their experiences of poor health and disability on the
one hand and their perceptions of a good or excellent
quality of life on the other. We examine the processes
by which the paradox is resolved in the minds of per-
sons with disabilities. We develop a balance theory ex-
planation for the paradox where the experience of
well-being and life satisfaction is contingent on the per-
son's achieving balance between body, mind and spirit.
We discover that a balance theory, particularly empha-
sizing the relationships between body, mind and spirit
in the context of the larger environment, explains
many of the apparent contradictions raised by the
paradox but that some questions remain unanswered.
We argue that a good quality of life, despite adverse
conditions, re¯ects a reconstituted balance between body, mind and spirit. Similarly, a poor quality of life
re¯ects the absence of such a balance. We then discuss the ®ndings from the viewpoint of people with disabil- ities and from the able bodied public and point to
directions for future research. Balance theories of health are the foundation of
most great healing systems (Gonzales, 1997). Ancient
Greek medical theory, for example, posited that health was achieved by a balance of ®re, earth, air and water elements in the body. Ayurvedic medicine argued that
illness resulted from an imbalance of elements in the body and between the body and the environment (Chastel and Ce nac, 1998). Classical Chinese medicine is built on the notion of a balance between ying and
yang energy forces in the body and interventions designed to restore equilibrium between these forces, when required. Modern Western medicine, based on
germ theory, seeks to identify pathophysiologies in the body that distort or curtail organic functioning and apply interventions to restore balance in the bodily sys-
tems (Bernabeo et al., 1997). Building on this tradition, we use a balance theory framework to conceptualize equilibrium between the body, mind and spiritual com-
ponents of individuals and the relationship of persons to their physical and social environment. We conceive of health and perceptions of quality of life as a result of this balance. Illness and dissatisfaction with life are
a consequence of distortions in this balance.
2. The disability paradox
The disability paradox highlights the importance of personal experience with disability in de®ning the self, one's view of the world, social context and social re- lationships. This is in contrast to those who have not
had such experiences. There is a decided negative bias in the attitudes and expectations of the public and health care workers toward persons with disabilities
(Wright, 1988). At best, many people act with ambiva- lence toward or are non-supportive of persons with disabilities (Katz et al., 1988; Georges, 1997). In a
comparative study, the general public and rehabilita- tion workers had signi®cantly less positive attitudes towards persons with disabilities than did a group of persons with spinal cord injury (Lys and Pernice,
1995). In other studies, persons with disabilities had signi®cantly more positive attitudes toward persons with disabilities than did nurses or members of the
nursing faculty (Berrol, 1984; Brillhart et al., 1990). These attitudes were expressed in terms of willingness to interact with and feel empathy for persons with dis-
abilities. Research on business managers' perceptions found that they placed more social distance between themselves and persons with disabilities than they did
disability and has merit. However, in this research, `people
with disabilities' and `disability' were used because that is the
term preferred in the United States by disability activists and
which is familiar to the general population of people with
impairments and disabilities. Secondly, in pretests and focus
groups, these are the terms that individuals like the persons in
the study understood and wanted to be used. Many of these
people did not understand the concept of impairment well nor
how it di�ered from disability and handicap. Therefore, to
remain close to the terminology, experience, understanding
and culture of the people we studied, we used the terms
`people with disabilities' and `disability' (Be rube , 1977).
G.L. Albrecht, P.J. Devlieger / Social Science & Medicine 48 (1999) 977±988978
between themselves and able bodied people (Albrecht et al., 1982). The visibility of the disability, perception
of moral stigma and inability of the individual to com- municate clearly increased the amount of social dis- tance managers felt from persons with disabilities.
These negative attitudes, ambivalence, and perceived social distance seem to be mitigated in some instances by close contact with persons with disabilities and fam-
iliarity with their life experiences (Mitchell et al., 1993; Grayson and Marini, 1996). Negative attitudes, perceptions and ambivalent beha-
vior toward persons with disabilities appear to be ac- companied by judgments of the general public that persons with disabilities do not have as high a quality of life as the able bodied (Connally, 1994). A recent
report, for example, claims that over a recent 13 year period there has been little improvement in the quality of life persons with disabilities living in London
(London Boroughs Disability Resource Team, 1992). The report indicates that there are 700,000 persons with disabilities living in London who generally have
low quality of life measured in terms of environmental access, education, community care, employment, ben- e®ts, housing and transportation. The report concludes
that of the 6.2 million British persons with disabilities, those in London face the worst discrimination of all in terms of lack of opportunities and lack of services. However, there is some indication within the research
literature that some persons with disabilities do experi- ence good quality of life against all odds. Freedman found, for instance, in a 1978 study that many people
with chronic health problems derived some happiness from their ability to cope with their di�culty. He cites the case of one woman with kidney disease, who
reported: ``Naturally, it makes many things in life very hard and interferes with lots of activities. Su�ce it to say that I'm quite pleased with my ability to cope with this health problem and lead a worthwhile and happy
life in spite of it or perhaps because of it'' (Freedman, 1978, p. 122, cited in Weinberg, 1988). Based on her own research, Weinberg (1988, 152) elaborates on indi-
viduals who embrace disability, stating that persons in this group ``are satis®ed with who they are and are able to reach their life goals despite or even because
of their disabilities, despite societies tendency to view disability as a continuing tragedy''.
3. Quality of life for persons with disabilities
There are myriad conceptual models and measures of quality of life and health related quality of life but no uniform consensus on which should take pre-
cedence (Lerner and Levine, 1994; Albrecht, 1996). In this paper quality of life refers to the holistic notion of well-being. It is fundamental to address disability in
terms of salutogenesis (i.e. in terms of positive adap-
tation and resolution to stress) rather than in terms of pathogenesis; the consideration of disability in terms of the pathological consequences (Antonovsky, 1987).
In Sol Levine's words, ``the emphasis upon quality of life is a salutary development wherein attention is di- rected to the ability of the individual to perform such
social roles as worker, family member, citizen or friend'' (1987, 4).
Quality of life is broader than the notion of health- related quality of life. The latter notion developed as a result of major concerns in health care because of
chronic illness, new technology, cost containment, interest in medical outcomes, and a concern to huma-
nize health care (Albrecht, 1992; 1996). While the dis- tinction between these two types of quality of life is important in many contexts, such as physical, role and
social functioning, vitality, and mental health (Lerner and Levine, 1994), it is critical in studying disability not to restrict the notion of quality of life to health re-
lated issues. The domain of disability extends far beyond health related concerns to encompass the per-
son's well-being, de®nition of self and social position (Grimby et al. 1988). As a holistic concept, quality of life goes beyond activities of daily living and disease
categories because it directs attention to the more com- plete social, psychological and spiritual being.
Furthermore, people with disabilities have claimed minority status due to discrimination and vigorously reject being reduced solely to persons with poor health
and diminished function. Within this research tradition, there has been a
search to determine the components that de®ne and
predict quality of life. From our holistic perspective, there are a number of components that can in¯uence
the inherent balance and well-being of persons with disabilities. For example, Ross and Willigen (1997) found that education improves well-being because it
increases access to nonalienated paid work and econ- omic resources that increase the sense of control over
life, as well as access to stable social relationships. Education therefore seems to be a component that po- tentially impacts balance. Likewise, strong social sup-
port networks and community ties o�er promise in bu�ering people with disabilities from stress, helping them maintain a balance and anchoring them in the
daily activities of the community (Pescosolido et al., 1995). On the other hand, pain and isolation are found
to be negatively associated with quality of life (Baszanger, 1989; Carey, 1994; Grant and Haverkamp, 1995). One can ask, then, how having a job and
resources, a social network and community ties enhance stability and how pain or isolation destabilizes a person's equilibrium. This stream of questioning
leads us to ask more subtle questions about the dynamics of the quality of life construct, both within
G.L. Albrecht, P.J. Devlieger / Social Science & Medicine 48 (1999) 977±988 979
the individual and as a result of a relationship with an environment (Allison et al., 1997).
Our interpretation of quality of life in terms of bal- ance shares many of the assumptions and ®ndings of Antonovsky's salutogenic orientation and closely re-
lated theory of the sense of coherence Antonovsky (1987). Based on Antonovsky's work, we are interested in understanding how some people with disabilities
establish and maintain a deep sense of well-being and manage stress well. Disability presents an enormous problem for the individual and community. For, as
Stiker (1997) suggests, disability introduces chaos and ambiguity into the social world of the individual and the community. Individuals, families and communities are unprepared to recognize and seldom ready to
accept disability. Disability shatters preconceived ex- pectations and norms and calls accepted values and notions of well-being into question.
Antonovsky addresses the questions of chaos and ambiguity. He argues that individuals with a strong sense of coherence will make sense of their social
worlds as rational, understandable, structured, and predictable places (comprehensible). They will also per- ceive that they have access to su�cient resources to
help them cope adequately with the problems they con- front (manageability). Finally, they will have the ca- pacity to ®nd meaning, values and the motivation to persist in the face of adversity with a disruptive con-
dition such as disability (meaningfulness) (Antonovsky, 1987; Lundberg, 1997). While useful and provocative of much research, at its core the theory of coherence is
a rational model that minimizes emotions and a�ective behavior (Geyer, 1997). It also does not carefully at- tend to the dynamic inter-relationships between com-
prehensibility, manageability and meaningfulness. We set out to extend Antonovsky's saltugenic orientation and coherence theory by addressing these issues in a study of persons with disabilities.
Our understanding of balance between body, mind, and spirit concurs rather well with the di�erent com- ponents in Antonovsky's concept of the sense of
coherence by considering comprehensibility (mind), manageability (body), and meaningfulness (spirit) in the context of disability. Where we deviate from
Antonovsky's model is in stressing the dynamic inter- relatedness between the components in relation to them- selves and the external environment rather than the
content of each component. We also take emotions into account. This conceptualization lays the foundation for understanding disabled individuals' quality of life.
4. Methods
As part of a larger study on `living with a disability', one hundred and ®fty three persons with disabilities
were interviewed in their homes, in community settings
and in shelters for the homeless between October 1995 and July 1997 in the Chicago metropolitan area using a semi-structured interview format. In an e�ort to
understand how persons with disabilities live their daily experiences with disability in the community, the study investigated how persons with disabilities discov-
ered and accessed sources of health and medical care, what resources were available to them and which were
useful, what unmet needs they experienced, what they regarded as the grinding problems of everyday life and how they dealt with them, whether or not they had
contact with the disability community and what were their personal experiences with their family, friends,
other persons with disabilities, employers and pro- viders of health and social services. Additional demo- graphic and medical data were also collected. The
results of this group of interviews and observations of the interviewers provided information on how persons with disabilities constructed their social worlds and
dealt with the grinding problems of everyday life but these will not be discussed further here.
Since the purpose of the study was to interview per- sons in the community and not in institutions, clinics, agencies or health and social service provider o�ces,
eleven social networks of persons with disabilities were identi®ed by members of six informal disability com-
munities in white, black and Hispanic neighborhoods. Interviews were conducted in four predominantly white, four predominantly black and three predomi-
nantly Hispanic informal, loosely knit, community groups which often spanned neighborhood boundaries. There was considerable mixing of sex, race/ethnicity,
age, education and type of disability in many of these groups. The common bond was the disability experi-
ence. Some of these people had reliable access to care but most struggled mightily in obtaining consistent access to medical and social services and almost every
person had persistent problems with trying to receive integrated services and have their problems dealt with in a timely fashion. Even when they received medical
or social services, they felt that they were most often treated as cases and not empathetically as fellow
human beings with disabilities. One individual was identi®ed in each of eleven sep-
arate networks through contacts in community based
disability groups, from lists of people who had been rejected for government rehabilitation bene®ts, by ®nd-
ing impaired people in shelters for the homeless and by identifying patients who came to the Emergency Departments of large city hospitals for treatment of an
acute medical episode related to an impairment. The members of these networks usually did not know each other very well but had run into each other through
their common experience of having di�culty in acces- sing systems of continuous and integrated services for
G.L. Albrecht, P.J. Devlieger / Social Science & Medicine 48 (1999) 977±988980
people with disabilities. A snowball sampling strategy
was employed until all of the people in each loosely knit, community network were interviewed. In all, six to eighteen people were interviewed in each group. All
but eleven of the persons contacted for an interview consented to be interviewed; a 92.8% response rate. Refusals were due to persistent ill health or lack of
interest in the project. While this snowball sampling strategy was highly e�ective in reaching people with
disabilities in the community who had di�culties in accessing and remaining in systems of care, were not integrated into activist or self help groups and many of
whom did had very limited resources, we also recog- nize potential limitations in the sample. One could hy- pothesize that this technique over sampled persons
with limited resources and a lower quality life. These people also had some loose connections to others with
disabilities. The sample might, then, under-represent individuals who receive excellent care and are well-con- nected in the disability community and those isolated
persons who have few contacts with others. The interviews were conducted by the investigator
and two research assistants, one a Spanish speaker, who were highly trained in dealing with and interview- ing persons with disabilities. All respondents were con-
sented, informed that they would be participating in research designed to understand better the needs and experiences of people with disabilities and that the
study was not sponsored by or related to any govern- ment, health or social service agency. The interviews
lasted approximately two and one half hours due to the semi-structured and probing nature of the inter- view and di�culty of some respondents in communi-
cating clearly. Pertinent to the disability paradox, each respondent
was asked the following questions: ``Do you think that
you have a disability?''; ``Why do you think this?''; ``Have you ever been medically diagnosed with a dis-
ability?''; if yes, ``What was that disability?''; ``In gen- eral, how would you describe the quality of your life?'' The responses ranged from excellent to poor and
included not sure. ``Why do you think that your qual- ity of life is ...?'' Those that responded that they had a good or excellent quality of life, were additionally
asked, ``To outside observers, you appear to have a moderate or serious disability but you report that you
have a good or excellent quality of life. How would you explain this seeming contradiction to them?'' Each question and response was followed by probes, such as
``Can you tell me more about that? Can you give me an example?''
The respondents ranged in age from 18 to 74 with a median age of 53 years. 49% were male; 40% white, 45% black and 15% Hispanic. 50% reported being
single, never married, 17% married and 33% being separated, divorced or widowed. 51% completed high
school and 13% had graduated from college. 27.5% were employed full or part time and 37.9% lived
alone. The respondents represented a fairly equal dis- tribution of the following disabilities: arthritis, spinal cord injury/paralysis, cerebral palsy, multiple sclerosis,
orthopedic conditions, head injury, HIV/AIDS, heart conditions, eye/vision problems, chronic obstructive pulmonary disease, diabetes, chronic pain and addic-
tion/mental illness. All persons in the study had been diagnosed with a disability. 93% reported that their disability had a moderate or serious e�ect on their
daily lives while 7% said that they did not consider their disability too limiting.
5. Analytical approach
All interviews were transcribed and translated where required. The data were managed, organized and ana- lyzed using the principles for the analysis of qualitative research described by Becker and Geer (1982), Strauss
and Corbin (1990) and Huberman and Miles (1994); Strauss and Corbin, 1997. The qualitative analysis of the participants' responses can be summarized in a
number of steps. Data pertaining to quality of life questions were ®rst sorted out between individuals who reported an excellent or good quality with life
and a poor or fair quality of life. Within each of these two groups, subsets of statements supporting an excel- lent or good quality of life and a poor or fair quality of life were sub-categorized and re®ned according to
content and theme. Categories and sub-categories were linked and integrated by specifying the relationships between the related quotations. In the second step, a
breakthrough in the theoretical development from ®rst level description to a higher level of analysis was achieved by seeing the ®rst level concepts in relation to
a set of higher order, inter-related, organizing con- cepts. The respondents' description and rationale for their excellent or good and poor or fair quality of life
was expressed in terms of `balance' between body, mind and spirit and relationships to their external en- vironment.
6. Results
In examining responses to the quality of life ques- tion, we note that 54.3% of the persons with serious disabilities in the study reported that they had an
excellent or good quality of life. These numbers com- pare with 80±85% of persons with no disabilities who report they are satis®ed or very satis®ed with their
quality of life in various national surveys in the 1990's (Leitman et al., 1994). In these national surveys, adults with no disabilities have reported increased satisfaction
G.L. Albrecht, P.J. Devlieger / Social Science & Medicine 48 (1999) 977±988 981
with their lives over the last ten years while persons with disabilities have not. This growing disparity seems
to be due to the fact that persons with disabilities have not seen the same relative increase in income and ben- e®ts over the decade as the general population. Also in
the most recent surveys, respondents with disabilities are more likely to have severe disabilities than before and consequently are more limited in daily activities
such as getting around and socializing. During this same time period, the general population
has consistently expressed negative attitudes towards
persons with disabilities and do not think that they have a very good quality of life (Wright, 1988; Brillhart et al., 1990). These results from our study and national surveys substantiate the existence of a
disability paradox. In our study, over half of the people with serious disabilities who have limited incomes and bene®ts, serious limitations in activities in
daily living and are relatively socially isolated report that they have an excellent or good quality of life. As determined by national surveys and more targeted
research, the public does not think this to be true. Thus, the disability paradox exists in two forms: ®rst, people with disabilities report that they have serious
limitations in activities of daily living, problems in performing their social roles and experience persistent discrimination yet they say that they have an excellent or good quality of life; and, second, the general public,
physicians and other health care workers perceive that persons with disabilities have an unsatisfying quality of life despite that fact that over 50% of these people
report an excellent or good quality of life. We now turn our attention to organizing the indi-
viduals' responses detailing why they perceived them-
selves to have an excellent or good or a poor or fair quality of life.
6.1. Factors contributing to an excellent or good quality of life
Many of the respondents reporting a high quality of life said that, although they were disabled and limited in some physical or mental ways, they still had control
over their bodies, minds and lives. They expressed a `can do' approach to life. For example, a 33 year old married white paraplegic male with a daughter said:
After my wreck with a truck on the Kennedy, I rea- lized I couldn't move my legs. I thought that my
life was over. But during rehab and after I came back home I had plenty of time to think. I still had my mind. My body was in a wheelchair but I could
still be a father, husband, son and have friends. I could coach my daughter's softball team and I'm in training to be a counselor. I can do it. I have a life.
Similarly, a young married woman with multiple scler- osis related:
I don't like the way my disease is going but I can't complain. I have good days and bad days but all in
all I have a good life. I can get around with a cane. I have a job. I can drive a car. I have friends and a good sex life. I play and I can travel. I can do most
things I want, if I plan them.
Many respondents referred to being able to drive
cars as being a critical marker in their feeling in con- trol of their bodies and minds. They related:
I'm proud. Everything still works. I can drive a car. I had to pass my drivers test again and no problem. You know, you can't pass a driver's test unless you can think pretty quick and your body responds.
You can't believe how happy I am to be able to drive. I can get around, shop and see friends. Plus
they won't let you drive, if everything isn't working.
Others concentrated on physical appearances versus performance:
When I realized I had CP (cerebral palsy), I was crushed. But you know what? I don't care what
others think when they see me. I live my own life and can do about anything. If I can do it, then what's the di�erence?
Numerous women, but some men also, mentioned the emotions they felt, the maturity they gained and
satisfaction they received from providing emotional support to others:
I cried and cried from realizing that I had lost my
sight. I couldn't drive anymore, read or watch tele- vision but I found that I could listen and talk. I was able to get a better relationship with my son
and help him stay out of trouble. He started taking good care of me, you know, coming by, shopping for me and giving me a call about every day.
When I came down with bad sugar problems and couldn't see so good, I had to give up my job at the store. I felt pretty sad. But then I said, Clem,
you've got to get a hold of yourself. I joined a group at my church that helps people who can't get out for themselves. We shop for them and visit.
You know, giving someone else a lift gives me a lift.
Many respondents also mentioned the importance of their faith or a rediscovered spirituality in giving them strength, direction and a meaning in life:
G.L. Albrecht, P.J. Devlieger / Social Science & Medicine 48 (1999) 977±988982
When I reached the bottom after I had AIDS and began to loose control of my body and I even
thought my mind at times. I tried coke and smack to make me feel better but I always felt worse when I was sober. One day a minister in the clinic said,
why are you killing yourself? There's more to life than you and your problems. I thought about that. He was right. I went sober and started looking
around beyond myself. I found meaning, values and the spiritual aspects of life.
People look at me with my chronic obstructive pul- monary disease and think what a poor bastard. I'm
glad I'm not in his shoes. They don't understand. Visually, you see an oxygen bottle, impairments and limits, but the spirit is boundless. It's not going
to stop me from living a full and meaningful life.
If I wouldn't have had my faith, I would have never been able to deal with my congestive heart
failure. I felt like a time bomb waiting to explode but I deepened my belief in something bigger than I am. My faith gave me strength to accept my con- dition and live each day to its fullest.
Believe me, after my head injury from driving while I was worried about work and crashed into the car ahead of me and brain surgery, I found God.
Something was more important than me and my problems.
The experience of disability served to clarify and re- orient the lives of numerous respondents. Inner
strength and resiliency for these people came from hav- ing clear values and a balanced view of the place of the mind, body and spirit in the make-up of the whole person which provided a balanced perspective on life:
Disability was a huge shock for me. I always
thought that old people were decrepit like my grandmother but never dreamed that it could hap- pen to me, a 38 year old mother. I was bumbling
through life, went to school, had kids and a job but took things for granted. Then, multiple sclerosis hit me like a lightening bolt ± without warning. I went
into a deep depression and was about to give up hope but I looked at my husband and kids and said: Get your head on straight. What's important here. My values were clari®ed by the shock. The
big picture came into focus. My MS (multiple scler- osis) wasn't as important as my family and I wasn't going to let it ruin our lives.
While disability was a resource that stimulated value
clari®cation and goal orientation for some, for others it provided an impetus for psychological growth. Some people said that helping and giving to others improved
their quality of life. Where it might be expected that people with disabilities should take from others, they
also have a deep need to give to and help others. They want to be in balanced, reciprocal relationships. For one young man, it served as an opportunity to change
and mature:
When I was 18, I thought it was cool to be a gang banger. Everyone gave you respect, girls were always around and money was easy. Then, I got knifed in a ®ght. I didn't know it right away but I
was partly paralyzed. Layin' in the bed at Cook County, I thought about what's so great about belongin' to a gang. I got a mom and two younger
sisters at home. They need help and a di�erent example. I went back to get me a GED and I'm tryin' to help my mom and keep my sisters in
school and o� the street.
For a young women in her 30's, ``Disability made
me grow-up. My idea of success changed. It's not tak- ing from others or having everything that's important but giving and talking with others that makes me feel
good''. Numerous other persons reported how disability
presented a new standard against which success is
measured. Quality of life for these individuals comes from doing well with the disability. Disability becomes a job where persons must marshal their entire resources and give their best e�orts to succeed.
Satisfaction is derived from doing a good job with one's life. The concept of success was adopted here as a sense of achievement within the limits of the disabil-
ity and the external environment. This is often seen when people analyze their actions and compare them- selves with others in similar or di�erent circumstances.
Comparison with others provides persons with disabil- ities with comparison levels, norms, information on how to behave and positive and negative role models.
Other people can't understand why I am so happy. They don't have the same appreciation of life. They
would have to understand the satisfaction of using all my resources to conquer each day of challenges.
Not only am I able to take care of my problems and live a damn good life but I'm even able to help somebody else and I think that's good. We all have
tough days and periods of life. It's how we deal with them that counts. I used to feel sorry for myself and want more. Disability changed that. I
now feel blessed with what I have.
Compared to others, I have it good. I see other people with conditions like mine and feel and look a lot better than they do. Sometimes I even see
G.L. Albrecht, P.J. Devlieger / Social Science & Medicine 48 (1999) 977±988 983
people who are in much worse shape than me; who don't have family or friends or can't get out and
about. I'm lucky.
I feel good that I've got my drug addiction and AIDS under check. I feel good about myself 'cause
even though I fucked up and got AIDS. I cleaned up my act and feel good about it. I just look at those other poor bastards out there who show me
where I could have been.
An analysis of the statements of those with moderate
or serious disabilities but who report an excellent or good quality of life reveals that high quality of life does not seem to be explained by denial of the conse-
quences of disability (Kelly, 1992, 1996). Rather, respondents explain their well-being in terms of acknowledging their impairment, being in control of
their minds and bodies; being able to perform expected roles; having a `can do' approach to life; ®nding a pur- pose, meaning, and harmony in life; having a spiritual
foundation and outlook; constructing and living in a reciprocal social world, including emotional give and take; and, feeling satis®ed when comparing ones self to one's capabilities and the conditions of others in simi-
lar situations.
6.2. Factors contributing to a poor or fair quality of life
45% of the persons with disabilities reported a poor or fair quality of life. Analysis of their description and
analysis of their self assessed well-being also resulted in a number of clear concepts and themes. The experience of pain certainly diminished perceived quality of life. People in pain lose control over their body as well as
their social lives and environment. The body becomes the dominant center of attention and its unpredictabil- ity and its vulnerability constantly threatens the person
with the disability. The vulnerability, fear and experi- ence of pain is not easily shared with others for it is often invisible and may not even be measurable by
medical instruments. Pain calls the person's credibility and soundness of body and mind into question. Pain is a lonely experience.
Some of the respondents speak about their experi- ences with pain:
My quality of life is terrible because I am in con- stant pain. Everything I do hurts. In some ways its even worse because the pain comes in waves. Some
are predictable and others are not. I can't control it. I live in fear of making any social plans. Will I have to cancel and if I do will people really under-
stand or invite me again? When I ®rst went to my doctor, he was sympathetic but over time I could see him become short tempered. He did many tests
but couldn't ®nd the cause of my pain. I think he thinks that much of this is in my head. It's pretty
depressing. My husband is supportive but he only has so much to give also. It's no fun to be a drain on people. I don't have a life.
I have problems with my right leg that was shat- tered in a truck accident. Every once in a while, every few days, it feels like someone put a vice on your foot and is twisting your leg all around. When
that happens the pain is unbearable. I can't work or have fun. I have to go home. No one really knows what it's like.
My arthritis is no fun; it ruins my life. It controls everything I do and I don't always know when it will ¯are up. People say, move to Arizona but my family and husband's work is in Chicago. I don't
like talking to people about pain because it makes me feel like a worrisome person, being negative, so I don't feel open to discuss it with others.
Fatigue also plays an important role in negatively a�ecting the quality of life of person with disabilities. Experiencing frequent or continual fatigue robs the
body and mind of the energy and organization to plan, perform roles and live a full life. Numerous people who reported poor or fair quality of life revealed that
fatigue depleted them and sapped their life force:
I have a lousy quality of life. It's easy for you to think that I'm lazy but I'm continually exhausted
even by getting washed and dressed. Sometimes I don't even want to go to the bathroom. It is so much work to transfer from my wheelchair to the
toilet and back. My spinal cord injury and pain just suck all of the energy out of me. My mind can't even tell my body what to do.
The fatigue aspect of diabetes keeps me from being
active as I used to be and I would like to be. I'm tired most of the time. I just feel myself slipping downhill into a lonely corner of my apartment. I
don't have the energy to make plans and get out with friends except for birthdays and holidays. I'm at the point where it's not mind over matter.
Losing control over one's body functions or being surprised by the body or mind not functioning in an expected way scares persons with disabilities and
reduces their quality of life:
The scary part of COPD (chronic obstructive pul- monary disease) is at times I can't breathe. I feel
that I am going to su�ocate in my own body. Sometimes I know this is going to happen like in heat waves or pollution but other times I get sur-
G.L. Albrecht, P.J. Devlieger / Social Science & Medicine 48 (1999) 977±988984
prised and scared. This is the shits. I can't plan to do anything and I'm afraid I might die at any
moment.
With CP (cerebral palsy) like I have, I can't even
communicate with very many people. They think that because I can't talk clearly that I'm stupid; plus I have trouble getting around. I feel trapped in
my own body and brain with no good way to get out. It's lonely in here.
The discrepancy between what persons would like to do and can do or between what they used to do and
now can do can scar their self image. One man in his 40's commented, ``I don't feel particularly proud of what I do. At best, I live from day to day depending
on others and not contributing much to anybody. I'm not satis®ed with myself but what can I do about it?'' Some persons with disabilities who do not have a
strong purpose in life, clear values or some general sense of spirituality also reported a low quality of life. As an older woman said: ``I live alone and have no family. I don't believe in God so church groups don't
appeal to me. Besides if there were a God, why would I have this constant pain, diabetes, lousy sight and a bad heart? I really have nothing to live for''.
In the words of persons with disabilities, poor or fair quality of life, is due to the disorganizing experi- ence of pain; being de-energized by continual fatigue
and a sense of hopelessness; the loss of control of cor- poral or mental activities; and/or having no clear pur- pose or spiritual outlook in life. When respondents were analyzed across their di�erent types of disability,
those people who had communicative and cognitive disorders, invisible impairments and those who experi- enced continual or episodic pain and general fatigue
consistently reported poorer quality of life than those who had visible impairments, a good energy level and who only sporadically experienced predictable pain.
6.3. A balance framework for understanding quality of life
In the next stage of analysis, we discovered that the shared experiences and rationales employed by persons with disabilities to describe and explain their quality of
life could be summarized in terms of relationships between the body, mind, and spirit. Body refers to the organic and physical function dimensions, and mind to
the rational and intellectual capacities of the self. Spirit refers to the recognition that the self is part of a higher order of the universe, a belief in a higher being and/or
having a purpose in life larger than and extending beyond the self. Each of these concepts constitute unique yet closely inter-related dimensions of the self.
Emotions refer to the subjective, a�ective responses of
persons to their body, mind and spiritual experiences. In analyzing the responses, roles, function and a
`can do' approach to life represent the relationship
between mind and body. People who perform and take satisfaction in their roles are intellectually aware of
their accomplishments in comparison to what they can expect from the biological functioning of their body. Resiliency, while incorporating the body, is a concept
that more fully illuminates the relationship between the mind and the spirit. Rational thinking and spiritual re- generation of energy may lead to resiliency in spite of
a biologically limited body. Satisfaction with bodily control is a concept that expresses the relationship
between the body's biological dimensions and the spiri- tual in the sense that persons with disabilities recognize that quality of life is achieved by relating the function-
ing of the body to more general purpose and a higher order in the universe. While this exercise was useful in constructing a
theoretical framework, there were elements in the re- sponses that eluded explanation expressed simply in
terms of the interrelationships between body, mind, and spirit. They required a more general sociological focus on the person's social and environmental con-
text. For example, even if we could conceptualize roles/function as the outcome of an interrelationship between body and mind, numerous statements also
referred to the external environment and social con- text. Higher quality of life was experienced when the
gap between individual capacity and environmental constraints was reduced through social support, use of assistive devices and reduction of barriers. Concepts
such as isolation, loneliness and environmental barriers demanded that our initial framework be expanded to include a sense of context. The inter-relationship
between the body, mind and spirit clearly bene®tted from considering integration of the individual into the
family, community and larger society. In developing a theoretical framework using the re-
lationships between body, mind and spirit and the per-
son's relationship to the external environment to explain a high quality of life for persons with disabil-
ities, we also took into account those who reported a poor or fair quality of life. Such an analysis takes both sides of the paradox into account. The analysis
appears to hold. Those who reported fair or poor quality of life related that they had di�culty in main- taining a balance in the relationship between body,
mind and spirit and with the external world. They revealed that pain caused the relations between body
and mind to deteriorate, they had trouble making sense of it, and they felt depressed. They said that fati- gue expressed a breakdown in the relation between the
body and spirit. The body simply would not respond to what the mind dictated and the spirit desired. Loss
G.L. Albrecht, P.J. Devlieger / Social Science & Medicine 48 (1999) 977±988 985
of control over corporal and/or mental activities also represented a breakdown in balance within the self and
having no clear purpose or spiritual outlook in life rep- resented an inability of persons to make sense of their lives and a loss of motivation to act. People with poor
quality of life also expressed a detachment from or defeatism in dealing with the outside world. To summarize our analysis, we developed a frame-
work that responds to the questions raised and to the comments and explanations of our respondents. We understand quality of life for persons with disabilities
in terms of the ability of the self to build and manage a balance between the body, mind and spirit in search- ing for a state of well-being and to establish and main- tain an harmonious relationship with the environment.
In our analysis, we observed that among persons with disabilities one dimension of the self may compensate for the loss/chaos in another so that a relatively
balanced self is maintained where good quality of life may result.
7. Conclusion
A disability paradox exists. The explanation of the paradox resulted in a framework that summarizes and organizes the concepts, relationships and factors that
persons with disabilities say in¯uence their quality of life for better or for worse. The central concept in the framework has to do with establishing and maintaining
a sense of balance between the body, mind and spirit and with the individual's social context and environ- ment. Yet, the framework explains only part of the dis-
ability paradox. We understand that some persons with disabilities may be able produce and maintain their balance and consequently experience a high qual- ity of life while others may not be able to do so due to
their health conditions, limited resources, lack of knowledge or environmental constraints. The high quality of life reported by many respon-
dents could be due to a `secondary gain' which occurs when individuals with impairments adapt to their new conditions and made sense of them. Individuals who
experience disability can ®nd an enriched meaning in their lives secondary to the disability condition. In this study, secondary gains occurred when individuals used their disability condition and subsequent outcomes to
reinterpret their lives and reconstitute personal mean- ing in their social roles. We interpret these secondary gains within our balance framework.
From a sociological perspective, disability is a con- dition that requires action and interpretation in a social context. Typically impairment is a physical, cog-
nitive or mental condition that may be permanent or transitory. On the one hand, individuals with an impairments may internally experience organically
based activity limitations which are expressed in dis-
abilities. On the other hand, impairments are often de®ned by the social responses of others to the indivi- dual's impairment. Here, the disability may well be the
result of a disabling physical or social environment and most often the interaction of the two. Those who have a high quality of life obtain an understanding of
their condition, take control and introduce an order and predictability in their lives. They learn what is
possible and set goals. They develop or elaborate a value set that helps them make sense of their disability. They conserve energy and search out for resources to
manage their lives better. They continually search for knowledge and educate others. They engage in their social networks and remain connected. They give to
and receive from others in reciprocal relationships. These people re-create their social worlds in a balance
with the di�erent types of social glue that hold their lives together. Usually those people with disabilities who do not ex-
perience a high quality of life do not have ordered and predictable worlds. Nor do they possess the knowl-
edge, resources and social contacts that provide the social glue necessary to re-construct a balance and well-being in their lives. Often their low quality of life
is related to impairments that produce fatigue, con- stant or unpredictable pain and to physical and social environments that discourage them from becoming
empowered and acting as agents in their own lives. The sociological evidence suggests, then, that low qual-
ity of life for persons with disabilities is based on di�- cult-to-manage impairments, lack of knowledge and resources and disabling environments. Theoretical
e�orts to understand quality of life among persons with disabilities and intervention e�orts designed to enable and empower these individuals will build on
both the organic base of impairments and the social model of disability.
To fully explain the disability paradox further stu- dies are necessary. Qualitative work on other disability populations would be useful to see if the same patterns
unfold and the framework is supported. Additional data are needed to explore the experiences and in- terpretations of individuals who are close to persons
with disabilities in order to see how their experiences and interpretations coincide or are discordant with the
people who have disabilities. The limitations of our data do not allow such a comparison. However, we can derive a number of research questions that await
further testing. One set of research questions focuses on the di�erent
types of imbalance between body, mind and spirit. Identifying these di�erent types of imbalances and exploring their consequences would contribute to qual-
ity of life theory, help explain what constitutes well- being and suggest intervention strategies for persons
G.L. Albrecht, P.J. Devlieger / Social Science & Medicine 48 (1999) 977±988986
with disabilities. Such research would also be fruitful
for research on able bodied persons and individuals in diverse cultural settings. A second set of research questions could explore the
process and dynamics of how persons with disabilities establish and maintain a healthy reciprocity and bal-
ance with their social context and environmental sur- roundings. What supportive and enabling relationships can be established and strengthened that contribute to
balance? What are the individuals' immutable con- straints and how can they be handled? A third set of research questions could address the
frequently inaccurate and distorted understandings that able-bodied individuals have of the hidden dimen-
sions of the self and experiences of persons with dis- abilities. This creates multiple misinterpretations and misunderstandings between persons with disabilities
and outsiders. Hence the social construction of disabil- ity by the able-bodied does not ring true to people with disabilities. The able-bodied public and even
health care and social service workers concentrate on the organic, functional and rational aspects of the con-
ditions and problems while grossly under-estimating the importance of the mental, spiritual, emotional and social components that contribute to the persons with
disabilities' quality of life. Even if these components are recognized, often inadequate attention is given to enabling persons with disabilities to achieve a balance
between these component aspects of the self and their social worlds. Social isolation and loneliness are often
the result. In this context, the concept of stigmatization can be expanded to consider the di�erent constructions of quality of life and e�orts to resolve `disability' and
`quality of life' by both disabled and non-disabled indi- viduals. Activists have attempted to remedy this situ- ation by advocating the disability movement to bring
their viewpoint to the public's attention. Their aware- ness of a discrepancy becomes for them a source of
resiliency. A fourth set of research questions could focus on
how the experience of disability can be a growth and
maturing opportunity for individuals with disabilities which gives them a great deal of satisfaction. Likewise,
investigations could be undertaken to ascertain how persons with disabilities often enrich the lives of those around them.
This paper has addressed the disability paradox building on the work of Levine and Antonovsky by using qualitative research to describe and analyze the
responses of 153 persons with disabilities to questions about their quality of life. This research took a saluto-
genic approach to the lives of persons with disabilities. It extended Antonovsky's coherence model by attend- ing to the relationships between body, mind and spirit
and emotions and considered the relation of individ- uals to their social context and external environment.
A balance framework was, then, proposed to summar- ize these relationships and point to future research.
8. Unlinked References
Albrecht, 1992; Antonovsky, 1993; Be rube , 1997;
Georges, 1997; Grimby et al., 1988; Lerner et al., 1994; Strauss and Corbin, 1997
Acknowledgements
This research was supported in part by the Award For the Promotion of Human Welfare and a University of Illinois Great Cities Faculty Award to
G.L.A. We also acknowledge the encouragement of David Braddock and colleagues in the Department of Disability and Human Development, University of
Illinois at Chicago.
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