Social Support through a Blindness Organization Predicts Life Satisfaction and Positive Disability Identity

By Mercedes Ann Zapata

Mercedes Ann Zapata, who has retinitis pigmentosa, is a California licensed psychologist, credentialed school psychologist, and lecturer in the Berkeley School of Education at the University of California, Berkeley.

Abstract

Background: Disability identity refers to self-concept as a person with a disability and includes such attitudes as disability affirmation and acceptance. Disability identity is emerging in psychological literature as a predictor of life adjustment among people with disabilities. Objective: This study examined predictors of disability identity and well-being (i.e., psychological distress, life satisfaction) among members of a blindness organization. The author hypothesized that perceived social support would predict more positive disability identity and higher life satisfaction as well as lower psychological distress. Methods: Participants included 142 members of the National Federation of the Blind (NFB) who participated in an online survey in 2020. Results: Findings from linear regression indicated that NFB members who reported greater social support through the organization had higher life satisfaction and more positive disability identity, adjusting for impairment-related, personal, and environmental factors. Conclusion: This study highlights the association between feeling supported through the NFB and experiencing higher satisfaction with life and more positive disability identity.

Keywords

Blind, disability identity, social support, life satisfaction, stigma

 

Social support has been theorized as a contributor to overall well-being through various main effects, such as positive experiences, stable and socially-rewarded roles, and help with avoiding negative experiences (e.g., financial or legal problems; see Cohen & Wills, 1985, for a review). Social support has also been theorized to operate as a buffer against life stressors (Cohen & Wills, 1985). Cohen and Wills (1985) described four support resources that may function as buffers against stress: esteem support (e.g., self-esteem, acceptance, validation, emotional support), informational support (e.g., advice, help with problem-solving), social companionship (e.g., quality time), and instrumental support (e.g., resources, services). Empirical evidence has been found for both conceptualizations of perceived social support (see Cohen & Wills, 1985). Perceived social support is associated with positive well-being in people with physical disabilities (Bambara et al., 2011; Bogart et al., 2018; Müller et al., 2012; Silverman et al., 2017).

Qualitative research has found that people with disabilities perceive benefits of interacting with other people with the same disability (Doyle, 2015; Mejias et al., 2014; Salmon, 2013; Tabuteau-Harrison et al., 2016). A few quantitative studies involving survey research have indicated a link between participation in online disability groups and such positive indicators as community orientation (Cummings et al., 2002), perceived personal growth, and perceived positive relations (Obst & Stafurik, 2010). Investigating the potential benefits of social support provided by friends within the disability community, Silverman et al. (2017) found that legally blind participants who had more friends with blindness reported significantly higher life satisfaction, after accounting for the number of friends who were not blind. Experimental research is limited and has yielded mixed results (Kaplan et al., 2011; Valenstein et al., 2016). In their randomized controlled trial, Kaplan and colleagues (2011) found that participants with disabilities who engaged more in unmoderated, unstructured Internet peer support reported higher psychological distress than those who participated less or had no participation. In another randomized controlled trial, Valenstein and colleagues (2016) found that participation in a disability peer support intervention enhanced quality of life and reduced depressive symptoms, but not more so than the receipt of self-help materials. Research on disability peer support has yet to explore the potential psychological benefits of participation in disability organizations, which may involve varying types and degrees of both in-person and online engagement depending on member preferences.

Few studies have examined the relationship between perceived social support and disability-specific indicators of well-being, such as positive disability identity. Disability identity, operationalized as a set of attitudes towards having disability, is emerging as a predictor of well-being (see Forber-Pratt et al., 2017), including psychological distress (i.e., anxiety and depression; Bogart, 2014), life satisfaction (Bogart, 2015), general self-efficacy (Zapata, 2018), self-esteem (Bogart et al., 2018), hope (Zapata, 2020, 2022b), and employment (Zapata, 2022a). In the first study to examine the relationship between social support and disability identity attitudes, Bogart and colleagues (2018) found that perceived social support—measured as a general construct without indicating source of support—predicted higher disability pride. Qualitative research has yielded evidence that support received through disability support groups can foster disability pride (Mejias et al., 2014). More research is needed that explores the relationship between disability identity attitudes and social support received within the disability community.

The Present Study

The goal of this study was to examine the association between perceived social support—specifically, social support received through a national blindness organization—and positive disability identity, life satisfaction, and psychological distress among members of the organization. First, using confirmatory factor analysis, this study examined the structural validity of the perceived social support instrument used in analyses. Second, using multiple linear regression, this study investigated perceived social support among members as a predictor of disability identity (disability acceptance and disability affirmation), psychological distress (anxiety/depression), and life satisfaction, adjusting for impairment-related factors (e.g., stability of disability, visibility of disability, secondary disability, mobility tool use), personal factors (e.g., education level, employment status, household income, marital status, parenthood status), and environmental factors (e.g., social support, stigma). Based on findings from Bogart et al. (2018) and Silverman et al. (2017), the author hypothesized that perceived social support would be positively associated with disability identity and life satisfaction and negatively associated with psychological distress.

Method

Participants and Procedures

The age range of participants was 19 to 81 (M = 51, SD = 15). Participants were 32% male (n = 45) and 68% female (n = 97). All participants reported having low vision or blindness (N =142). All other personal, impairment-related, and environmental characteristics are reported in Table 1. Participants were recruited through a mailing list of the National Federation of the Blind (NFB) in Fall 2020. Inclusion criteria for participation were being 18 years of age or older and being a member of the NFB, the oldest and largest blindness organization in the United States (National Federation of the Blind, n.d.). NFB members have various opportunities for structured and unstructured, online and in-person involvement. Examples include state and national conventions, local chapter affiliations, opportunities for civic and political engagement, and subgroups and mailing lists based on such categories as parenthood status, student status, ethnic identity, and profession. Prior to taking the survey, participants were informed about study rationale, the voluntary nature of the survey, risks/discomforts, and anticipated benefits of participation. This study was approved by the IRB of the author’s institution. 

Measures

Dependent Variables: Disability Identity and Well-Being

Four continuous outcome variables were included in this study. The first two instruments were attitudinal measures of disability identity: disability acceptance (four items) and disability affirmation (four items; Hahn and Belt, 2004). Disability affirmation items included “I am proud to be a person with a disability,” and disability acceptance items included “I do not have a sense of belonging to the disability community.” Validity and reliability evidence for these disability identity instruments has supported their use among adults with low vision and blindness (Zapata, 2018, 2022a). The remaining instruments were included as indicators of well-being, psychological distress, and life satisfaction. Psychological distress was measured using the four-item Patient Health Questionnaire-4 (PHQ-4; Kroenke et al., 2009). A four-point Likert scale was used to capture symptoms of anxiety and depression reported over the past 2 weeks. Life satisfaction was measured using the five-item Satisfaction with Life Scale (SWLS; Pavot et al., 1991). A seven-point Likert scale was used to capture overall satisfaction with life. Structural validity and internal reliability evidence of the PHQ-4 and SWLS in adults with low vision or blindness was reported by Zapata (2019).  

Independent Variables: Impairment, Personal, and Environmental Factors

The International Classification of Functioning (ICF) defines disability as the intersection of impairment, personal, and environmental factors (Üstün et al., 2003). In accordance with the ICF’s definition, impairment-related, personal, and environmental factors were explored as predictors of disability identity (i.e., disability acceptance and disability affirmation), psychological distress, and life satisfaction. Impairment-related factors included the following dummy-coded variables: Stability of disability (disability reported as stable versus progressive = 1), visibility of disability (having a disability that is noticeable to others at least most of the time = 1), presence of secondary disability (having multiple disabilities = 1), and mobility tool use (uses cane and/or guide dog at least half of the time = 1). Personal factors included the following dummy-coded variables: Educational level (Bachelor’s degree or higher = 1), employment status (part-time or full-time employment), parenthood status (being a parent = 1), marital status (being married = 1). Total household income was included as a nine-point ordinal scale item. Racial or ethnic background was not included in analyses because almost 80% of participants reported identifying as White or European American.

Environmental factors included stigma and three indicators of social support: (a) having at least one friend who has a disability (dummy-coded), (b) having a family member with low vision or blindness (dummy-coded), and (c) an eight-item original measure of social support received through the NFB. Enacted and internalized stigma were measured using the eight-item Stigma Scale for Chronic Illnesses (Molina et al., 2013). The term enacted stigma refers to negative attitudes experienced by the stigmatized group member, and the term internalized stigma refers to negative attitudes that become believed and applied to the self. In the current study, the term “illness” was replaced with “disability” on all items, given that illness is not a ubiquitous underlying cause of low vision or blindness. Participants responded to items on a five-point Likert scale from 1 (never) to 5 (always). A mean score was calculated, with higher scores indicating higher enacted and internalized stigma. Lastly, the eight-item measure of esteem and informational social support was developed for use in the current study based on a theoretical model by Cohen and Wills (1985). Participants responded to items on a seven-point Likert scale from 1 (strongly disagree) to 7 (strongly agree). A mean score was calculated, with higher scores indicating higher esteem and informational support. The measurement of specific support types, including esteem and informational support, is precedented (see, for example, Reinke & Solheim, 2015).

Results

Descriptive Statistics and Preliminary Analyses

Means, standard deviations, and statistics regarding normality of the distribution of subscale scores are displayed in Table 2. Skewness and kurtosis statistics generally indicated normal score distribution, however, scores on the social support scale demonstrated high kurtosis, such that almost 25% of responses were in the highest category. A correlation matrix including all subscales is displayed in Table 3. Cronbach’s alphas and McDonald’s omegas were all above .70, indicating acceptable internal reliability of all subscale scores.

Confirmatory factor analysis was run to explore the structural validity of the eight-item social support measure developed for use in the current study. Based on recommendations by Comrey and Lee (1992), the obtained sample size was considered acceptable for confirmatory factor analysis. The following fit indices were used to test model fit: The comparative fit index (CFI), the Tucker-Lewis index (TLI), the standardized root mean square residual (SRMR), and the root mean square error of approximation (RMSEA). An acceptable model fit was determined based on a CFI and TLI value at or above .90, an RMSEA value at or below .08, and an SRMR value below .08 (Kline, 2005). Indices of model fit were generally in the acceptable range: CFI = .95, TLI = .93, and SRMR = .03. The RMSEA coefficient was .14, which is higher than an acceptable cutoff of .08; however, relatively high RMSEA coefficients can be due to the effects of small sample size (Kenny et al., 2015). Factor loadings on social support items were excellent (see Comrey & Lee, 1992), ranging from .78 to .90. See Table 4 for all factor loadings on the social support scale.

Regression Analyses

Based on recommendations by Green (1991), the obtained sample size was considered acceptable for multiple linear regression. Multicollinearity statistics were acceptable: Variance inflation factor (VIF) values were below 2.10 and tolerance values were above .48 for all variables in the regression models. The Bonferroni calculation was used to control for Type I error, resulting in a critical alpha of .003. In other words, associations would be considered statistically significant given a p-value less than .003. A multiple linear regression model was run on each of the four outcome variables: disability acceptance, disability affirmation, life satisfaction, and psychological distress (i.e., anxiety/depression). Results of regression analyses are presented in Tables 5 through 8.

In the first regression model, disability acceptance was run on social support. Findings indicated that disability acceptance was positively associated with perceived social support received through the NFB (p < .001), adjusting for impairment-related, personal, and environmental factors. Additionally, disability acceptance was negatively associated with stigma (p < .001). The model on disability acceptance explained 26% of variance in disability acceptance scores, a large effect (see Cohen, 1988).

In the second regression model, disability affirmation was run on social support. Findings indicated that disability affirmation was positively associated with perceived social support received through the NFB (p < .001), adjusting for impairment-related, personal, and environmental factors. The model on disability affirmation explained 17% of the variance in disability affirmation scores, a moderate effect. 

In the third regression model, life satisfaction was run on social support. Findings indicated that satisfaction with life was (a) positively associated with both employment (p < .001) and social support (p = .002) and (b) negatively associated with stigma (p < .001), adjusting for impairment-related, personal, and environmental factors. The negative association between life satisfaction and having multiple disabilities approached significance (p = .003), such that participants who reported having multiple disabilities reported, on average, lower life satisfaction. The model on life satisfaction explained 39% of the variance in life satisfaction scores, a large effect.

In the fourth regression model, psychological distress was run on social support. Findings indicated that psychological distress was not significantly associated with social support. Psychological distress was positively associated with stigma (p < .001), adjusting for impairment-related, personal, and environmental factors. The positive association between psychological distress and age approached significance (p = .003), such that younger NFB members reported higher anxiety and depression symptomology. The model on psychological distress explained 28% of the variance in psychological distress scores, a large effect. 

Discussion

Perceived social support received from within the blindness community, through a national blindness organization, predicted more positive disability identity, measured as higher disability affirmation and higher disability acceptance. Findings regarding social support were consistent with Bogart et al. (2018). Notably, Bogart and colleagues used a general measure of social support, whereas this study measured social support received from the blind community.

Social support received through the NFB was also predictive of participants’ self-reported satisfaction with life. Life satisfaction was measured in this study as a global construct that considers all domains of life. Participants who reported receiving more emotional and informational support through the NFB also reported on average higher endorsement of the following statements: My life is close to my ideal; the conditions of my life are excellent; I am satisfied with my life; so far I have gotten the important things I want in life; if I could live my life over, I would change almost nothing. The findings regarding life satisfaction are partially consistent with Silverman and colleagues (2017): Support received through the NFB, but not having a close friend with a disability, was found to predict higher life satisfaction in the current study. Current findings provide preliminary evidence for the importance of both individual and organizational efforts to promote emotional and informational support within a blindness organization. 

Additionally, Silverman and colleagues (2017) found that many people with physical disabilities reported having no close friends with the same disability or any disability. Silverman and colleagues concluded that the presence of both tangible and psychological barriers may prevent people who share disabilities from interacting and making connections. In the current study, the majority of participants (86%) reported having a close friend who has a disability, perhaps indicating that the NFB functioned as a source of friendship for NFB members who participated in the study.

The association between negative health and life outcomes and both enacted and internalized stigma among people with disabilities is well-documented (see Molina et al., 2013). Consistent with the literature on stigma and disability, stigma emerged in the current study as positively associated with psychological distress and negatively associated with disability acceptance and life satisfaction. In other words, participants who reported greater enacted and internalized stigma also reported lower life satisfaction and disability acceptance as well as higher anxiety and depression. The association between perceived stigma and disability affirmation was negative but not statistically significant. These findings regarding stigma are not consistent with Bogart et al. (2018), who found a positive correlation between disability pride, which is conceptually similar to disability affirmation, and stigma. In the current study, enacted and internalized stigma was correlated with negative psychosocial outcomes, both disability-specific and general.

Younger participants reported higher psychological distress, adjusting for other factors. Implications include the importance of considering well-being needs of NFB members based on age cohort, particularly concerning anxiety and depression symptoms. Finally, two associations approached statistical significance and warrant further empirical consideration. First, employment status (having at least part-time employment) emerged as a significant predictor of higher life satisfaction. This finding is consistent with the general literature on the benefits of employment among people within the blind community (for a systematic review, see Lund & Cmar, 2019). Second, participants who had multiple disabilities reported, on average, lower life satisfaction compared to participants who were solely blind or visually impaired. Implications include the importance of (a) better understanding and promoting employment experiences in this population and (b) considering well-being needs of NFB members based on multiple disability status. A hypothesis for future investigation, participants may feel a lack of support for their other disabilities when they receive support specifically for low vision and blindness.

Limitations and Future Work

Although social support is theorized to support positive disability identity formation and well-being, conclusions cannot be drawn about the causal directionality of present findings. Research involving experimental (e.g., disability identity or social support intervention) and quasi-experimental design (e.g., pre- and post-membership measures) may be warranted to consider causal hypotheses. Future work should also explore mediational hypotheses, including the potential role of social support in mediating the relationship between perceived stigma and well-being. Disability acceptance and disability affirmation may also function as mediators of the relationship between perceived stigma and other psychosocial variables, including those explored in this study. Bogart et al. (2018) found that disability pride partially mediated the relationship between perceived stigma and self-esteem; a similar phenomenon may be observed with such psychosocial variables as psychological distress and life satisfaction. Furthermore, future investigations should explore intersectional domains of social support by seeking the perspectives of members from diverse racial or ethnic backgrounds or who represent other minority identities. Feelings of social support may vary as a function of other identity characteristics and contextual life experiences. Given the preliminary nature of present findings, future work should consider current findings in light of potential confounding variables. For example, alternative explanations for the observed association between social support and psychosocial outcomes may include socially desirable responding or other limitations of self-report data, particularly those involving perception variables (e.g., bias in participant reporting based on such confounds as general optimism and overall social connectedness).

The measure of social support used in this study did not include items representing Cohen and Will’s (1985) theorized domains of instrumental support and social belonging. More comprehensive investigation of social support in this population is warranted. Additionally, esteem and informational support was measured using a unidimensional scale; separate examination of Cohen and Will’s support domains is warranted in future research.

Another limitation is related to external validity. For example, 70% of participants in this study reported having a Bachelor’s degree or higher, but research has found that less than 20% of U.S. adults with low vision or blindness have a Bachelor’s degree or higher (National Federation of the Blind, 2019). Thus, this sample is not representative of people with low vision or blindness and may not be representative of members of national blindness organizations. In addition, this study examines the attitudes and perceptions of members from a single blindness organization. In order to explore the generalizability of current findings, future research should investigate similar questions within other disability organizations or among people within the blindness community who are not affiliated with any blindness organization.

Implications for Practitioners

Findings of the current study are preliminary and may be best interpreted as supporting the importance of future investigation of the psychosocial benefits of disability organization membership. This study contributes to the literature on disability social support by indicating the importance of considering psychosocial correlates of affiliation with disability organizations, which may represent a multi-tiered social support platform with various forms of potential in-person and online social involvement. Both scholars and practitioners may benefit from a consideration of the following questions: How to conceptualize the social support systems available through membership; how to understand the potential psychosocial benefits of various roles and functions of membership; how to explore the perceptions of members towards social support available through membership; how to understand and enhance the membership experiences of current and future members. Exploration of such questions may benefit individuals with low vision or blindness by informing how blindness organizations facilitate opportunities for social support. Additionally, such exploration may inform how other service providers (e.g., rehabilitation counselors, therapists, trainers, and other educators) understand and communicate the potential psychosocial benefits of participation in blindness organizations.

Conclusion

This correlational investigation provides evidence that perceived social support received through NFB membership predicts both global and disability-specific positive psychosocial outcomes. First, participants who felt higher emotional and informational support also reported higher overall satisfaction with life, a global indicator of well-being. Second, participants who felt more supported through the NFB also reported, overall, more positive disability identity, including higher disability acceptance and higher disability affirmation. These findings suggest that individual and organizational efforts to cultivate feelings of support among NFB members may benefit members through enhanced life satisfaction and positive identity as low vision or blind.

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