Do you have a disability? A population-based test of acceptance, denial, and adjustment among adults with disabilities in the U.S.

Acceptance and denial are often conceptualized as mutually exclusive responses to one's disability status. In the literature on psychosocial adjustment, denial is typically seen as an interim coping stage, adopted by the individual until he or she is able to internalize the implications of having a disability (Livneh & Antonak, 1991; Stewart, 1999; Wright, 1980). Failure to accept disability has been linked to poor psychological adjustment (Dangoor & Florian, 1994; Donahue, Robins, Roberts & John, 1993), and poor physical health (Matthews & Harrington, 2000). While these perspectives on denial are widespread, they are not universal (Joachim & Acorn, 2000; Lynch & Gussell 1996). The objective of this study is to assess the relationship between disability acceptance and adjustment in the general population using a nationally representative sample of adults with disabilities.

In the counseling literature, the terms acceptance, integration, adaptation, adjustment, and coping are often used interchangeably to denote a predictable final stage in response to one's disability (Livneh, 1991; Livneh and Antonak, 1991; Shulman, Carlton-Ford, Livian & Hed, 1995) that is thought to be associated with optimal psychosocial adjustment (Kamfe, Mitchell, Boyless, & Sauers, 1995). Livneh (1991) identified over 40 interrelated stage models, all of which identify denial as an early phase of adjustment. In some of these models, there is an unchallenged assumption that acceptance of disability is a necessary step toward psychosocial adjustment (e.g., Naugle, 1991; Shontz, 1989). Indeed, Livneh (1991) proposes a "unified theory of adjustment," with the emergence of a new [disabled] identity as the final phase of successful adjustment.

Support for the theory of adjustment has been less than unanimous, with a number of researchers arguing that, at least in some circumstances, denial of disability may be an effective coping strategy (Barga, 1996; Joachim & Acorn, 2000; Lynch & Gussell, 1996; Rapley, 1998). For example, in a qualitative study of students with cognitive disabilities, Olney and Kim (2001) found that most subjects were well aware of the negative meaning of disability within the larger culture, and that factors such as fear of social stigma and concern about discriminatory treatment by others led them to hide their disability status from others, at least in some interpersonal relationships and social settings:

   Instead of reaching a point of adjustment, participants
   framed their experience differently from minute to minute,
   expressing self-assurance and shame, conflict and
   coherence, sometimes in the same breath. For this reason,
   we have come to understand the process by which people
   learn to integrate cognitive disability into identity as a
   flexible continuum of responses that folds back on itself in
   various directions in response to a myriad of internal and
   external factors (p. 578).

At least one likely reason for the divergence in the literature is the different operational definitions of psychosocial adjustment. For example, adjustment has been characterized as happiness, a positive view of life, and positive assessment by others (Matikka, 1996); as high self-efficacy and mood control (Barnwell & Kavanagh, 1997); and as the absence of depression and low self-esteem (Dunn, 1996). A relatively straightforward assessment of adjustment, typically used in large surveys, asks respondents about various mental health issues (e.g. depression, anxiety, and social problems). If a respondent reports one or more problems, they are asked if the problems are serious and persistent enough to interfere with their ability to work, attend school, or manage day-to-day activities (e.g. Westbrook and McIlwain, 1996). This was the approach used in the present study.

Another reason for the divergence of opinion in the counseling literature is the preponderance of small and idiosyncratic samples of children or adults with different types and levels of disability, almost all of whom currently or recently received disability services such as rehabilitation counseling. To make general assertions about coping strategies of adults with disabilities, it is necessary to use a general population survey. This study uses data from the largest disability survey ever conducted, the Disability Supplement to the 1994-1995 National Health Interview Survey (NHIS), to explore the following research question:

   Will people with disabilities who accept their disabilities
   (i.e., self-identify as having a disability) report fewer
   adjustment problems than those who reject their disability
   status?

   or

   Will people with disabilities who accept their disabilities
   (i.e., self-identify as having a disability) report more
   adjustment problems than those who reject their disability
   status?

Method

Sample

The National Health Interview Survey (NHIS) is a continuing probability survey of households of the United States conducted by the National Center for Health Statistics (NCHS, 1998). The Disability Supplement (HIS-D) was administered concurrently with the NHIS core to all household respondents. The response rate was 87% (i.e., the NHIS core response rate, 94.1%, multiplied by HIS-D response rate, 92.5%). The analysis focuses on the adult sample (145,007 respondents, age 18 or older), and uses National Center for Health Statistics (NCHS) person weights (derived from Decennial Census data) to make the estimates representative of the total noninstitutionalized U.S. population. SUDAAN software was used to calculate standard errors for all national prevalence estimates. Following a protocol established by the NCHS, only estimates with a relative standard error of less than 30% were included in the summary tables.

Model Specification

The HIS-D includes two items on perceived disability: "do you consider [yourself] to have a disability?" and "do other people think [you] have a disability?" Table 1 shows the weighted responses to these items in the adult population. Approximately 7% of adults (an estimated 12.9 million people) said that other people would consider them disabled. However, an estimated 11% of this population said that they did not consider themselves disabled. For presentation clarity, we will refer to these groups as status acceptors and status rejectors. According to standard psychosocial theories described earlier, the latter group should report adjustment problems more often than those who accept their disability status.

Adjustment problems were defined in this analysis as the presence of one or more self-reported mental health problems (i.e., frequently depressed or anxious; phobias or unreasonably strong fears; frequently confused, disoriented, or forgetful; serious difficulty coping with day-to-day stresses; trouble concentrating long enough to complete everyday tasks; trouble making or keeping friendships; and/or trouble getting along in social settings). We distinguished serious adjustment problems as the presence of one or more self-reported mental health problems and a report that this problem(s) had seriously interfered with the individual's ability to work, attend school, or manage day-to-day activities.

A chi square test was used to compare rates of specific mental health problems among status acceptors and status rejectors. To help rule out the possibility that observed adjustment differences between the two groups were the result of other differences in the groups (e.g., the rejectors were less disabled than the acceptors), we used a logistic regression model to predict serious adjustment problems as a function of self-assessed disability status, simultaneously controlling for age, gender, race/ethnicity, income, self-assessed health, severity of disability, and psychiatric diagnosis.

Results

Status rejectors reported significantly lower rates of mental health problems than status acceptors across the board (Table 2). For example, roughly 19% of status rejectors reported they were frequently depressed or anxious, compared to 30% of status acceptors. Moreover, status rejectors were less likely to report that their symptoms were disruptive in their day-to-day roles and responsibilities than label acceptors ([X.sup.2]=86.3, p<.001).

Differences between the two groups (e.g. socioeconomic status or severity of disability) might influence both psychological adjustment and propensity to accept or reject one's disability status. Therefore a multivariate regression technique was used to simultaneously control for population factors other than perceived disability status that might account for the differences in adjustment. We found that age, gender, race and ethnicity, income, employment status, health status, psychiatric diagnosis, and severity of disability were all significant predictors of serious adjustment problems among adults considered disabled, but that rejecting one's disability status continued to be associated with lower rates rather than higher rates of poor adjustment, even when controlling for these factors ([beta]=-0.69, p<.001).

Discussion

We asked whether people who self identify as having a disability would report fewer adjustment problems. Our findings did not confirm this assumption. In contrast to the traditional concept of adjustment that identifies denial of one's disability as a major stumbling block, this study revealed that status rejectors were significantly better adjusted than status acceptors. This relationship was confirmed after controlling for a range of individual characteristics including demographics, self-assessed health, severity of disability, and psychiatric diagnosis. However, no causal inference should be made from this cross-sectional data, and it cannot be concluded that rejection of ones disability status somehow enhances mental health. Instead, these findings suggest that the relationship between disability and identity is a complex phenomenon that is dependent on social and economic institutions as well as individual characteristics.

Adjustment and the Social Model of Disability

Other researchers have noted that acceptance of disability status is not a consistent predictor of psychosocial adjustment (Belgrave & Walker, 1991; Dangoor & Florian, 1994; Romanoff, Israel, Trembley, O'Neill & Roderick, 1999), and that social (Charmaz, 1995) and environmental (Shontz, 1991) factors play as much of a role as internal factors in determining an individual's response to disability. In brief, these researchers argue that an individual's nascent identity as a person with a disability is shaped by personal beliefs and assumptions, as well as by the impressions and beliefs of family members, friends, and employers, and by public and private programs and disability service providers.

Hahn (1988) suggested that adjustment, often conceptualized as an internal process, does not fully take into account social reactions to disability. He noted that in order to accurately evaluate the disability experience, both functional limitations and social attitudes should be considered. Response to disability does not occur in a closed system, nor is adjustment a one-time event. Many individuals who could describe themselves as disabled must weigh the costs and benefits of identifying themselves as such. Receiving needed services (e.g. rehabilitation, personal assistance, or medical care) and benefits (SSI or SSDI) typically requires an explicit process of eligibility determination, yet being considered "disabled" often entails dealing with social stigma and discrimination. Indeed, Zola (1993) notes that there are explicit social pressures to deny disability status. He states that "proof of successful integration is embodied in such statements as 'I never think of myself as handicapped' or the supreme complement 'I never think of you as handicapped'" (Zola, 1993, p. 167).

Although denial, acceptance and adjustment can be useful concepts for counseling practice, they do not fully explain the complex relationship between individuals with disabilities and the labels ascribed to them. Adjustment theory encompasses a proscribed series of expected responses to undesired life changes. As such, the theory may be germane to people who have acquired physical disabilities or illnesses. Those with life long developmental, physical, cognitive, or learning disabilities may experience disability quite differently than do people with chronic illnesses or physical disabilities. Adjustment for those with acquired cognitive or psychiatric disabilities might be different yet from that of other disability groups. The psychosocial adjustment process as it has been described in the literature may match an individual's experience at some points in time or under specific circumstances.

An alternate theoretical construct must better take into account the social impacts and implications of being labeled disabled. In order to provide an accurate model, it must go beyond the individual's immediate experience to encompass the various cultural and personal meanings of disability. The social model locates disability in the environment rather than in the person. It is a natural outgrowth of three interrelated phenomena:

(1) An evolving disability policy which increasingly recognizes the pejorative treatment of individuals with disabilities as a human rights issue rather than as a result of individual failings (Rehabilitation Act Amendments of 1992);

(2) A gradual shift from a medical model of disability with its focus on ameliorating the limitations of the individual, to a minority group model that views the disenfranchisement of individuals with disabilities as evidence of discrimination (Hahn, 1985); and

(3) A rights perspective concerning reasonable accommodations and community integration (Americans with Disabilities Act of 1990). We suggest that the social model, with its emphasis on rights rather than rehabilitation, provides a useful framework within which acceptance, denial, and adjustment can be reconsidered.

Recommendations for Rehabilitation Practitioners

Professional judgments about whether a person has accepted her or his disability, and the impact of acceptance or denial on adjustment may overstep the empirical evidence. If indeed the individual need not identify with a clinical label to experience good adjustment, clinical expectations in this regard should be modified. Disability is often reified as a dichotomous concept; something people either have or do not have. In reality, individuals are neither disabled nor nondisabled, but rather people with a combination of needs, strengths, abilities and disabilities.

Acceptance of disability can indicate that the individual has obtained a profound understanding of their situation and the ability to cope with the implications of his or her disability. It can also mean acceptance of social imposed limitations or a stigmatized identity. Individuals with disabilities can and should be encouraged to define themselves, and to project an image that best meets their needs. We consider the possibility that those who reject a disability label report better "adjustment," at least in part, because they have determined for themselves how they will be identified. People who are participating in the workforce, are self-supporting, and receive few if any services may be less likely to think of themselves as disabled than those who are out of the workforce and/or reliant on formal services.

Acceptance, denial, and adjustment are concepts that are applied to many individuals and situations in the rehabilitation context. Further empirical test of these constructs should be undertaken to determine their accuracy and utility for (a) describing the responses of individuals with a variety of congenital and acquired conditions, (b) explaining variations in response depending on life circumstance (i.e., employment status, interaction with the service system, and economic status, (c) determining responses over time (i.e., longitudinal studies), and (c) distinguishing intrapersonal from interpersonal factors. In the meantime, the rehabilitation practitioner should view assessments or judgments concerning the adjustment of individuals cautiously and critically. Do you have a disability? Clearly an individual's answer to this question will depend on many factors, only one of which is a diagnosis of a specific disabling condition. This research confirms that perception of disability is a complex, interactive phenomenon that is dependent on economic and social, as well as personal experiences. Participation in life roles such as employee, client, or retiree may profoundly influence the perception of disability. Similarly, exposure to new paradigms (i.e., disability as a limitation that one must accept versus disability as a valued identity and means to empowerment) might result in dramatically different responses.

Table 1
Weighted responses to self and others perceptions of disability status

Do you consider yourself disabled?   Do others consider you disabled?

                                             yes               no

                                     est.N *     %     est.N *     %
yes                                  11,463    88.8%   167,918   98.2%
no                                    1,450    11.2%     3,092    1.8%
Total                                12,913     7.0%   171,010   93.0%

* Population estimates in 1000s. Source: National Center for
Health Statistics (1998).

Table 2
Mental health and adjustment problems among audlts considered disabled,
by self perception of disability status

                           Self-Perception of Disability

Mental Health Problems     Accept Label       Reject Label

                          est. Na     %      est. Na     %
Total                      11,463   100%      1,450    100%

Frequently depressed
  or anxious                3,394    29.6%      270     18.6%
Has phobias or
  unreasonably strong
  fears                     1,504    13.1%      138      9.6%
Frequently confused,
  disoriented, or
  forgetful                 2,374    20.7%      174     12.0%

Has serious difficulty
  coping with day-to-
  day stresses              2,011    17.5%      133      9.2%

Has a lot of trouble
  concentrating long
  enough to complete
  everyday tasks            1,689    14.7%       98      6.7%

Has a lot of trouble
  making or keeping
  friendships                 764     6.7%       73      5.0%

Has a lot of trouble
  getting along in
  social settings             591     5.2%       54      3.7%

Adjustment problem--
  seriously interfered
  with life in the past
  12 months                 2,400    20.9%      142      9.8%

Mental Health Problems    [X.sup.2]     p

Total

Frequently depressed
  or anxious                73.3      0.00
Has phobias or
  unreasonably strong
  fears                     12.4      0.00
Frequently confused,
  disoriented, or
  forgetful                 57.0      0.00

Has serious difficulty
  coping with day-to-
  day stresses              67.0      0.00

Has a lot of trouble
  concentrating long
  enough to complete
  everyday tasks            66.3      0.00

Has a lot of trouble
  making or keeping
  friendships                3.7      0.06

Has a lot of trouble
  getting along in
  social settings            5.1      0.02

Adjustment problem--
  seriously interfered
  with life in the past
  12 months                 86.3      0.00

(a) Population estimates in 1000s. Source: National Center for Health
Statistics (1998).

Table 3
Logistic regression model predicting mental health  adjustment problems
among adults considered disabled

Independent           Rates of subpopulation      Logistic regression
variables             adjustment problems            coefficients
                      est. N (a)       %       Beta    SE   t-test

Model intercept                                -2.8   0.2   -14.5

Do you consider
yourself disabled?
  no                       142        9.8%     -0.7   0.2    -4.8
  yes                    2,400       20.9%      0.0   0.0    --

Age
  18-29                    306       28.5%      0.0   0.0    --
  30-44                    741       27.2%     -0.4   0.2    -2.8
  45-59                    743       22.4%     -0.7   0.1    -4.6
  60-74                    369       10.6%     -1.3   0.2    -8.9
  75 and over               84       16.7%     -0.7   0.2    -4.3

Sex
  male                   1,172       18.5%      0.0   0.0    --
  female                 1,371       20.9%      0.2   0.1     3.4

Race/ethnicity
  white                  1,887       18.9%      0.0   0.0    --
  Hispanic                 207       26.6%      0.3   0.1     2.4
  black                    344       18.8%     -0.3   0.1    -2.5
  other                    104       30.7%      0.4   0.3     1.7

Income at or
below poverty
level
  no                     1,516       17.2%      0.2   0.1     2.1
  yes                      731       26.9%      0.0   0.0    --

Employment
status
  employed                 348       12.7%      0.0   0.0    --
  unemployed                88       28.3%      0.4   0.2     1.6
  out of the             2,102       21.4%      0.4   0.1     3.6
  workforce

Health status
  excellent-good           687       13.7%      0.0   0.0    --
  fair-poor              1,837       23.5%      0.6   0.1     7.6

Diagnosed with
psychiatric
disorder (b)
  no                     1,092       10.2%      0.0   0.0    --
  yes                    1,450       64.4%      2.6   0.1    31.5

Activity limitation
  unable to perform
    major activity       1,706       26.8%      0.8   0.1     5.5
  limited in kind/
    amount major
    activity               460       13.4%      0.2   0.2     1.3
  limited in other
    activities             218       12.5%      0.3   0.2     1.7
  not limited              158       11.6%      0.0   0.0    --

Total model fit
-2 normalized log
  likelihood (full
  model)                                                    2,352
Wald F (full
  model-intercept)                                           88.7

Independent           Logistic regression
variables                 coefficients
                               p

Model intercept              0.00

Do you consider
yourself disabled?
  no                         0.00
  yes                        --

Age
  18-29
  30-44                      0.01
  45-59                      0.00
  60-74                      0.00
  75 and over                0.00

Sex
  male                       --
  female                     0.00

Race/ethnicity
  white                      --
  Hispanic                   0.02
  black                      0.01
  other                      0.09

Income at or
below poverty
level
  no                         0.03
  yes                        --

Employment
status
  employed                   --
  unemployed                 0.11
  out of the                 0.00
  workforce

Health status
  excellent-good             --
  fair-poor                  0.00

Diagnosed with
psychiatric
disorder (b)
  no                         --
  yes                        0.00

Activity limitation
  unable to perform
    major activity           0.00
  limited in kind/
    amount major
    activity                 0.21
  limited in other
    activities               0.09
  not limited                --

Total model fit
-2 normalized log
  likelihood (full
  model)                     0.00
Wald F (full
  model-intercept)           0.00

(a) Population estimates in 1000s. Source: National Center for Health
Statistics (1998).

(b) Psychiatric disorders include major depression; antisocial,
obsessive-compulsive, or other severe personality disorder; bipolar
disorder; alcohol or drug abuse disorder; schizophrenia; paranoid or
delusional disorder; Alzheimer's or another type of senility disorder;
any other mental/emotional disorder.

References

Americans with Disabilities Act of 1990 (ADA), PL 101-336. (July 26, 1990). Title 42, U. S. C. 12101 et seq: U. S. Statutes at Large, 104, 327-378.

Barga, N. (1996). Students with learning disabilities in education: Managing a disability. Journal of Learning Disabilities, 29 (4), 413-421.

Barnwell, A.M., & Kavenagh, D.J. (1997). Predictions of psychological adjustment to multiple sclerosis. Social Science & Medicine, 45, 411-418.

Belgrave, F. Z., & Walker, S. (1991). Predictors of employment outcome of Black persons with disabilities. Rehabilitation Psychology, 36 (2), 111-119.

Charmaz, N. (1995). The body, identity, and self: Adapting to impairment. The Sociological Quarterly, 36, 657-680.

Dangoor, N., & Florian, V. (1994). Women with chronic physical disabilities: Correlates of their long-term psychosocial adaptation. International Journal of Rehabilitation Research, 17 (2), 159-168.

Donahue, E., Robins, R., Roberts, B., & John, O. (1993). The divided self: Concurrent and longitudinal effects of psychological adjustment and social roles on self-concept differentiation. Journal of Personality and Social Psychology, 64 (5), 834-846.

Dunn, D.S. (1996). Well-being following amputation: Salutary effects of positive meaning, optimism, and control. Rehabilitation Psychology, 41 (4), 285-302.

Hahn, H. (1985). Toward a politics of disability: Definitions, disciplines, and policies. Social Science Journal, 22 (4), 87105.

Hahn, H. (1988). The politics of physical difference: Disability and discrimination. Journal of Social Issues, 44 (1), 39-47.

Hanks, M., & Poplin, D. E. (1981). The sociology of physical disability: A review of literature and some conceptual perspectives. Deviant Behavior: An Interdisciplinary Journal, 2 (4), 309-328.

Joachim, G., & Acorn, S. (2000). Stigma of visible and invisible chronic conditions. Journal of Advanced Nursing, 32 (3), 43-248.

Kamfe, C.M., Mitchell, M.M., Boyless, J.A., & Sauers, G.O. (1995). Coping strategies used by undergraduate interns: Implications for rehabilitation education. Rehabilitation Counseling Bulletin, 38 (4), 318-333.

Livneh, H. (1991). A unified approach to existing models of adaptation to disability: A model of adaptation. In R. P. Marinelli and A. E. Dell Orto (Eds.) Psychological and social impact of sisability (pp. 111-138), New York: Springer.

Livneh, H., & Antonak, R. (1990). Reactions to disability: An empirical investigation of their nature and structure. Journal of Applied Rehabilitation Counseling, 21 (4), 13-21.

Livneh, H., & Antonak, R. (1991). Temporal structure of adaptation to disability. Rehabilitation Counseling Bulletin, 34 (4), 298-319.

Lynch, R. T., & Gussel, L. (1996). Disclosure and self-advocacy regarding disability-related needs: Strategies to maximize integration in postsecondary education. Journal of Counseling & Development, 74 (2), 352-357.

Matikka, L.M. (1996). Effects of psychological factors on the perceived quality of life of people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 9 (2), 115-128.

Matthews, C. K., & Harrington, N. G. (2000). Invisible disability. In D. O. Braithwaite, T. L. Thompson, et al. (eds). Handbook of communication and people with disabilities: Research and application (pp. 405-421). Mahwah, NJ: Lawrence Erlbaum.

National Center for Health Statistics (1998). Data File Documentation, National Health Interview Survey on Disability, Phase 1 and Phase 2, 1995 (machine readable data file and documentation, CD-ROM Series 10, Nos. 9 and 10). Hyattsville, Maryland: National Center for Health Statistics.

Naugle, R.I. (1991). Denial in rehabilitation: Its genesis, consequences, and clinical management in R.P. Marinelli and A.E. Dell Orto (eds.) Psychological and social impact of disability. New York: Springer.

Olney, M.F. (2001). Communication strategies of adults with severe disabilities: Supporting self-determination. Rehabilitation Counseling Bulletin, 44 (2), 87-94.

Olney, M. F., & Kim, A. (2001). Beyond adjustment: Integration of cognitive disability into identity. Disability and Society, 16 (4), 563-583.

Rapley, M., Kiernan, P., & Antaki, C. (1998). Invisible to themselves or negotiating identity? The interactional management of 'being intellectually disabled.' Disability & Society, 13 (3), 807-827.

Rehabilitation Act Amendments of 1992, PL 102-569. (October 29, 1992). Title 29, U. S. C. 701 et seq: U. S. Statutes at Large, 100, 1807-1846.

Romanoff, B.D., Israel, A.C., Trembley, G.C., O'Neill, M.R., & Roderick, H.A. (1999). The relationships among differing loss experiences, adjustment, beliefs, and coping. Journal of Personal and Interpersonal Loss, 4, 293-308.

Shontz, F. (1989). A future for research on rehabilitation and adjustment to disability. Rehabilitation Counseling Bulletin, 33 (2), 163-176.

Shulman, S., Carlton-Ford, S., Livian, R., & Hed, S. (1995). Coping styles of learning disabled adolescents and their parents. Journal of Youth and Adolescents, 24 (3), 281-294.

Stewart, J.R. (1999). Applying Beck's cognitive therapy to Livneh's model of adaptation. In R.P. Marinelli and A.E. DellOrto (Eds.). Psychological and social impact of disability (pp. 303-315), New York: Springer.

Weinberg, N. (1988). Another perspective: Attitudes of people with disabilities. In H.E. Yuker (ed.), Attitudes toward persons with disabilities (pp. 141-153). NY: Springer.

Westbrook, M., & McIlwain, D. (1996). Living with the late effects of disability: A five year follow-up survey of coping among post-polio survivors. Australian Occupational Therapy Journal, 43 (2), 60-71.

Marjorie F. Olney

San Diego State University/Interwork Institute

Karin F. Brockelman

University of Illinois

Jae Kennedy

Washington State University at Spokane

Mark A. Newsom

National Committee for Quality Assurance

Marjorie E Olney, PhD., CRC, San Diego state University/ Interwork Institute, 3590 Camino Del Rio North, San Diego, CA 92108-1716