Defining Disability: Understandings of and Attitudes Towards Ableism and Disability Council on Quality and Leadership University of Illinois at Chicago

Keywords:

Disability attitudes; prejudice; ableism; implicit attitudes; understandings for disability; disability industry

Abstract

Disabled people, amidst political and social gains, continue to experience discrimination in multiple areas. Understanding how such discrimination, named here as ableism, operates is important and may require studying perspectives of people who do not claim a disability identity. Ableism may be expressed in a number of ways, and examining how a particular group, in this case siblings of disabled people, understand and value disability may contribute to overall understandings about how ableism works. Thus, the purpose of this study is to explore relationships between siblings of disabled people's broad societal understandings of disability and their attitudes towards it. In order to tease out this relationship further we have also examined factors that impact how people define disability. Using both social psychological and sociological approaches, we have contextualized individual attitudes as providing additional new information about social meanings of disability, and set this study's results against the larger backdrops of debates over meanings of disability within Disability Studies. In our research, participants revealed complex understandings of disability, but most often defined disability as preventing or slowing action, as an atypical function, a lack of independence, and as a socially constructed obstacle. Participants' unconscious (implicit) disability attitudes significantly related to their understandings of disability as lacking independence, impairment, and/or in relation to the norm, and their conscious (explicit) disability attitudes. Moreover, longer employment in a disability-related industry was correlated with defining disability as a general difference, rather than as slowing or limiting of tasks.


Disabled people, amidst political and social gains, continue to experience discrimination in multiple areas. While disability has been theorized as an experience-based identity (Gill, 1997; Linton, 1998; Putnam, 2005), Disability Studies has also explored how disability as a set of meanings influence, and even structure, social relationships both through and beyond personal experiences of disability (Davis, 1995; Kafer, 2013; Rogers & Blue Swadener, 2001; Snyder& Mitchell, 2006; Thomas, 2004). One important example of this move is the development of the concept of ableism, or the compulsory preference for non-disability (Campbell, 2009). Ableism, like other "isms" such as racism and sexism, describes discrimination towards a social group, in this case disabled people, but it also describes how certain ideals and attributes are valued or not valued (Wolbring, 2008). For example, walking is more socially valued than moving by way of wheelchair (Hehir, 2007). Disabled people have expressed that the negative effects of ableism have been socially and psychologically damaging to them in a number of ways (Bell, 2013; Campbell, 2008; Keller & Galgay, 2010; Ostrove & Crawford, 2006; Overboe, 1999; Palombi, 2012). What is less known, however, is how ableist attitudes and understandings of disability appear in other groups that may not identify as disabled. For instance, abstract definitions and attitudes toward "disability" are held and acted upon by various groups including rehabilitation counseling students (Pruett & Chan, 2006), teachers (Federici & Meloni, 2008), physician assistant students (Archambault et al., 2008), child protective services employees (Proctor, 2011), and nurses (Aaberg, 2012). Because ableism is a social process of discrimination and bias, it is important to conduct more research on factors that may impact ableist ideas and actions. Following critical race studies in turning to an understanding of Whiteness in order to better understand how racism operates (Fine et al., 2007), this study explores how siblings of disabled people, a group that does claim a disabled identity, define and value disability.

One way complex views towards social minority groups are currently being explored is through explicit (conscious) and implicit (unconscious) attitudes. Because people may feel pressure to conceal their explicit biases, or may be unaware that they hold biases, recently particular attention has been drawn towards implicit attitudes (Amodio & Mendoza, 2011; Antonak & Livneh, 2000). For the purposes of this study, exploring implicit attitudes is particularly fruitful as in addition to typical cognitive processes; implicit attitudes may relate to external cues and learned associations (Amodio & Mendoza, 2011). As such they can both contribute to prejudice, and reflect internalization of society's prejudice. There is a particular need to explore implicit attitudes in the case of disability because of specific stereotypes and social norms related to disability. For example, it may be taboo to overtly express prejudiced feelings towards disabled people as they are often portrayed as pitiable (Harris & Fiske, 2007; Garthwaite, 2011; Ostrove & Crawford, 2006; Stewart, Harris, & Sapey, 1999). As a result, more recent literature has focused on implicit disability attitudes, with studies finding that both nondisabled and disabled participants highly favor nondisabled people and hold high levels of implicit prejudice towards disabled people (e.g., Aaberg, 2012; Archambault et al., 2008; Federici & Meloni, 2008; Pruett & Chan, 2006; Friedman, 2016; etc.).

To explore the relationship between understandings of disability and attitudes towards it we recruited participants with unique and varied positionalities to disability. Siblings of disabled people are a heterogeneous group with a wide range of experiences with disability. In fact, there have been a number of conflicting research findings about the positive and negative impacts of their experiences (Griffiths & Unger, 1994; Heller & Arnold, 2010). Siblings' attitudes about disability may be impacted by their experiences with their family members with disabilities in unique and complex ways. Yet, little is known about how siblings absorb and reflect meanings of disability. It is especially pertinent to learn more about how siblings' attitudes and understandings of disability relate, especially since siblings of those with disability are more likely to work in disability-related fields than others (Eget, 2009) ; they are more likely to take on increased caregiving roles for their disabled siblings (Burke et al., 2012). For these reasons participants were recruited through a national organization that provides information and support to siblings of disabled people; one of the inclusion criteria was having a brother or sister with a disability. Siblings of disabled people experience disability in a variety of ways, but their relational and experiential proximity to disability makes them a unique population from which to elicit understandings of disability.

Ableism may be expressed in a number of ways, and examining one particular group's attitudes and understandings about disability may contribute to overall understandings about how ableism operates. Thus, the purpose of this study was to explore relationships between siblings of disabled peoples' understandings, or definitions of disability, and the values they hold, or attitudes, towards it. In order to tease out this relationship further we also examined factors that impact how people define disability. Combining social psychological and sociological methodologies, we contextualized individual attitudes towards as providing additional new information about social meanings of disability, and set this study's results against the larger backdrops of debates over meanings of disability within Disability Studies. As a result, we used mixed methodologies including qualitative analysis of open-ended survey questions, and a number of quantitative measures to track the relationships between participants' understandings of disability and their conscious and unconscious attitudes towards it; in some cases using the qualitative themes we collected as variables in the quantitative analysis.

Methods

Participants

Our sample was comprised of forty-eight siblings. Forty-three (89.6%) of the participants were women; five (10.4%) were men. The majority of the participants (n = 41, 85.4%) identified as nondisabled, however a number (n = 7, 14.6%) were disabled. Participants were White (n = 38, 79.2%), Asian or Pacific Islander (n = 3, 6.3%), Black (n = 3, 6.3%), Hispanic or Latino/a (n = 2, 4.2%), Middle Eastern (n = 1, 2.1%), and interracial (n = 1, 2.1%). Participants ranged in age from 18 to 68, with a mean age of 38.23 years (SD = 13.28).

Measures

The Disability Attitudes Implicit Association Test. The Disability Attitude Implicit Association Test (DA-IAT) was utilized to examine participants' implicit disability attitudes (Greenwald et al., 1998). The DA-IAT presents participants with word and symbol stimuli and asks them to sort items as quickly as possible into two target-concept discriminations, 'disabled persons' and 'abled persons,' and the two attribute dimensions, 'good' and 'bad,' with one target-concept discrimination and one attribute dimension on each side of the computer screen at a time. For example, 'disabled persons' and 'good' on the left side of the screen and 'abled persons' and 'bad' on the right side of the screen. The target-concept discriminations and attribute dimensions switch sides so they are both stereotype consistent and inconsistent at different times. The DA-IAT measures the differences in reaction time when participants sort items into stereotype consistent and inconsistent categories.

The DA-IAT is the most prominent implicit measure of disability attitudes, having been administered to over 38,500 participants through the open-access Project Implicit study website alone (Nosek et al., 2007). The DA-IAT has been found to have construct validity (Aaberg, 2012; Pruett, 2004; Pruett & Chan, 2006), discriminant validity (White, Jackson, & Gordon, 2006), and reliability (Pruett, 2004; Pruett & Chan, 2006; Thomas, Vaughn, Doyle, & Bubb, 2013).

The Symbolic Ableism Scale. The Symbolic Ableism Scale (SAS) (Friedman & Awsumb, in preparation), which is an adapted version of the Symbolic Racism Scale 2000 (Henry & Sears, 2002), was utilized to measure participants' explicit disability attitudes. The SAS administers thirteen statements about disability to participants and asks them their opinion on a seven point Likert scale from strongly disagree to strongly agree. For example, one statement participants are presented with is: 'Most disabled people who don't get ahead should not blame the system; they really have only themselves to blame.' The Symbolic Racism Scale 2000 has good construct validity, discriminant validity, and predictive validity; it is also internally consistent (Henry & Sears, 2002).

Other items. In addition to the use of the two scales above, participants were also asked the open-ended question: "What is your definition of disability?" We also asked participants a number of other questions about their demographics, political orientation (sliding scale), relationships with disabled people, and involvement in disability advocacy.

Procedure

After completing an informed consent via the study website, participants were instructed that in order to participate in the DA-IAT they would push the 'E' and 'I' keys on the keyboard to sort stimuli to on the left and right side of the screen respectively. The instructions told them to do so as quickly as possible but with the least amount of errors. If a mistake is made and a stimulus is placed in the wrong category a red 'X' appeared in the middle of the screen until participants correct their answers. After viewing the instructions participants completed the DA-IAT, which is comprised of seven blocks (rounds) of categorization tasks. In the first block participants practice sorting only target-concept discrimination ('disabled persons' and 'abled persons') related stimuli (see table 1). (It should be noted that the terms disabled and abled persons are used to measure disability broadly rather than at an individual level.)

Table 1: Example of DA-IAT Block Presentation. Block one lists 'disabled persons' on the left and 'abled persons' on the right. In the middle there is the wheelchair symbol serving as the stimuli. Block 2 lists 'good' on the left and 'bad' on the right. The word bomb in the middle serves as the stimuli. Block 3 and 4 lists both 'disabled persons' and 'good' on the left and both 'abled persons' and 'bad' on the right. The stimuli in the middle is a stick figure of a person walking with a cane. Block 5 lists 'bad' on the left' and 'good' on the right. The stimuli in the middle is the word 'love'. Block 6 and 7 list 'disabled persons' and 'bad' on the left and 'abled persons' and 'good' on the right. The stimuli word, 'rotten', is in the middle.

Table 1
Example of DA-IAT Block Presentation
Block 1
Disabled personsImage of the wheelchair symbolAbled persons
Block 2
GoodBombBad
Blocks 3 and 4
Disabled personsFigure of an individual walking with a caneAbled persons
GoodBad
Block 5
BadLoveGood
Blocks 6 and 7
Disabled personsRottenAbled persons
BadGood
Note. The stimuli presented in the middle are examples.

The second block, which is also practice, presents only the attribute-dimensions ('good' and 'bad') related stimuli for sorting. During blocks three and four participants are presented with both the target-concept discriminations and attribute-dimensions and all the stimuli. The computer randomizes if they are presented with these items in a stereotype congruent or incongruent manner. In block five, only the attribute dimensions are presented, however they are now on opposite sides so that the participants can practice with the new location. Finally, in blocks six and seven participants are again presented with both the target-concept discriminations and attribute dimensions and all stimuli; however, these items are presented opposite to blocks three and four so if they were originally stereotype congruent they are now presented as stereotype incongruent and visa versa.

After the DA-IAT participants responded to the thirteen SAS disability statements from strongly disagree to strongly agree. Next participants completed the questionnaire items about their definitions of disability, and about their demographics and other factors.

Analysis

Participants' definitions of disability were analyzed using thematic analysis, which is a useful method for examining similarities and differences both within a single participant's response and across participants (Braun & Clarke, 2006; Manhire et al., 2007). A theory-driven approach, which involved engaging with relevant literature (Kafer, 2013; Kittay, 1999; Siebers, 2008), was used. Prior to examining the qualitative data, the authors discussed how the theoretical frameworks would inform data analysis, focusing on three aspects:

  1. The unique, but multiple experiences of individuals who may not identify as disabled themselves but may be in close relationship with disabled people, such as parents, partners and siblings (Arnold et al., 2012; Heller & Kramer, 2009; Kafer, 2013);
  2. Longstanding discrimination against disabled people, which may be related to certain understandings of disability (Charlton, 1998; Daruwalla & Darcy, 2003);
  3. Theoretical concepts related to disability, including disability as social movement (Hahn, 1985), disability as identity (Gill, 1997); disability as relational (Thomas, 2004; Kafer, 2013), and disability as complex embodiment (Siebers, 2008).

Then, the open-ended responses were independently coded by each author, using the themes described above. Each author then used the "in situ" codes to create themes. The two authors then met to discuss the codes and themes, combining themes together to reflect a cohesive analysis. We then returned to the raw data to verify the themes accurately represented the data, enacting the qualitative value of trustworthiness (Krefting, 1991).

Participants' implicit disability attitudes (DA-IAT) were calculated using Greenwald, Nosek, & Banaji's (2003) updated IAT scoring procedure, which compares participants' own stereotype congruent and incongruent blocks using response latencies. DA-IAT scores reveal participants' implicit preference for nondisabled or disabled people (Aaberg, 2012; Greenwald et al., 2003). Participants' mean scores on the SAS items served as their explicit disability attitude scores. The rest of the quantitative data was analyzed using descriptive statistics.

In addition to this qualitative analysis, we also quantified the qualitative data as a form of across-methods triangulation in order to enhance understandings of the data (Bernard, 1996; Chi, 1997; Fielding, 2012; Jick, 1979; Sandelowski, Volis, & Knafl, 2009; Ward, 2007; Young, 1981). Utilizing this mixed method allows one to "incorporat[e] multiple viewpoints in defining the theoretical boundaries of assessment practice, allowing numbers to 'speak' in order to enhance our understanding of data" (Ward, 2007, p. 10). Moreover, this quantified analysis was a beneficial additive to the "narrative layering and textual meaning" produced by the qualitative analysis (Ward, 2007, p. 10). Qualitative themes regarding participants' definitions of disability were quantitatively coded using indicator coding so relationships between their understandings of disability with disability attitudes, and other factors could be determined. For example, participant would receive a 'one' where their response reflected a theme, and a 'zero' where it did not. Themes were not mutually exclusive, that is participants could receive ones for multiple themes. After these analyses were completed, multiple regression models were run to determine statistically significant relationships between definitions of disability, disability attitudes, and other factors.

Findings

Descriptive Statistics and Prejudice Summary Data

On a sliding scale that ranged from very liberal (1) to very conservative (100), participants' mean political orientation was 30.63 (SD = 22.3). Two-thirds of participants (n = 32) have worked in a disability related industry. Of those participants, they had worked in a disability related industry for 16 years (SD = 14.21) on average. Fifty-four percent of participants (n = 26) responded they were active in disability advocacy. Nine participants (16.1%) were guardians to siblings with disabilities.

On average participants had low explicit disability prejudice scores (mean = 0.28, SD = 0.13). Yet, participants in this study had a moderate implicit preference for nondisabled people (mean = 0.53, SD = 0.44) on average. In fact, 83% (n = 39) of participants preferred nondisabled people, while 8% (n = 4) preferred disabled people, and 8% (n = 4) had no preference. Friedman (2017) explores the relationship between participants' explicit and implicit disability prejudice more in depth.

Disability Definitions from Siblings of Disabled People

In conjunction with the DA-IAT, participants were asked to define 'disability.' Their responses were coded using thematic analysis (Braun and Clarke, 2006), making use of the guiding theoretical concepts mentioned above. Several strong themes were present, including disability as preventing or slowing action, atypical function, lack of independence, socially constructed, and as general difference. These themes, taken together, reveal complex understandings of disability that relate to one another.

For instance, disability as preventing or slowing action is closely aligned with atypical function. The focus on action as an immutable good typifies an aspect of Siebers' (2008) ideology of ability in that disabled bodies are required to fit into broad social parameters of functioning, while the difference in mode of action is often ascribed to an individual difference in functioning. One participant defined disability as "someone who is incapable of doing something for themselves or has limited access to do something" while another participant identified disability as "something that makes you do things differently than the general population." These two exemplars relate to each other in that while the first emphasizes that being incapable of doing something for oneself is the exception, and therefore worthy of mention, the second example reinforces that the individual difference is made significant by the backdrop of what everyone else is doing. Disability is thus recognizable as that which makes one different from others, but applying the ideology of ability, it is clear that the referent for disability is the nondisabled "norm" or normate (Garland-Thomson, 1997). Defining disability, then, must draw upon the logics of other "deep structures" such as race, class, and gender.

Meanings of disability, as depicted within the present study, are not only represented by categorizations. The theme lack of independence emphasizes the perception that disability is related to reliance on others. This theme shifts the focus from a function-oriented focus to a relationally-centered definition. Disability, seen through the lens of dependency, forms the basis for relationships that may emerge from necessity, at least identified by these respondents, but it is a relationship nonetheless. As Eva Kittay (1999) reminds us, "interdependence begins with dependence" (p. xii). Disability as a relationship, however, is not limited to individuals, but rather serves as way to think about how disability functions as a social structure. The relationality of disability means that the presence of impairment does not only have meaningful effects on a disabled body, but on other bodies (Kafer, 2013). For instance, children who do not meet 'normal' height requirements are impacted by how they do or do not fit into compulsory norms (Kafer, 2013). Disability, then, is both embodied, but also spills over (Shildrick, 1997) into other bodies, the space between bodies, and the things that connect or separate bodies. The relationality of disability also, however, holds promise for further theorizing how particular roles related to disabled people might be distinctive and how those roles might illuminate something about how disability operates as a social structure (Thomas, 2004). For instance, even if parents and siblings of disabled people do not themselves identify as disabled, their particular knowledges, perspectives, attitudes, and understandings about disability may offer something to Disability Studies.

In addition to Kafer's work, Meltzer and Kramer (2016) and Mauldin (2014; 2016) have explored how conceptualizations of disability may be extended by focusing on relational spaces as sites where we might learn something about how the concepts of disability and ableism are socially and culturally constructed. Mauldin (2014), for instance, demonstrates how in the context of pediatric cochlear implant therapy, deafness is recast from sensory deficit to neurological issue, placing further responsibility onto mothers. These mothers, in response to this turn, come to view their children's deafness in complex ways, showing how technology, disability and familial relationships intersect and act upon one another. Such complexity, identified within our study as understanding disability as a social construction and general difference, may offer insight into how to diminish the negative effects of ableism. Close relationality to disability may serve to interrupt surface-level tropes of disabled people that so often find their way into how individuals value disability.

While Kafer's (2013) emphasis on the relational nature of disability is useful, equally important is her emphasis on the political nature of disability. For Kafer (2013), disability has to do with how certain relationships are ordered. Some respondents identified disability as socially constructed, including one participant who said disability is "a consequence of a society's lack of accommodations for people who are different." Another participant said that disability is "differences in the body or mind that meet socially constructed criteria to be deemed a disorder or disability. It is socially undesirable…" This definition resonates with the theme of disability as socially constructed but also invokes the theme of disability as a general difference . The theme of general difference acknowledges that disability is distinctive in some ways, but does not necessarily connote negative or deficit-based ideas about disability. In addition, both themes of socially constructed and general difference recognize that disability has been built and reproduced in certain ways. This connects with other themes including the emphasis on preventing or slowing action and atypical function. Put side by side, the emphasis on the 'negative' aspects of disability are often recognized as being a part of the larger social forces at work sustaining certain meanings about disability.

Relationships Between Disability Definitions and Disability Attitudes

In order to explore how definitions can relate to disability attitudes, binary logistic regressions were run to determine what definitions of disability (i.e., preventing/slowing actions/tasks; lacking independence; challenges and difficulty; general difference; social construction; atypical function; limitation; impairment; lack of participation) related to implicit disability attitudes when combined with explicit disability attitudes. Defining disability as lacking independence, impairment, and in relation to the norm, and explicit attitudes significantly predicted implicit attitudes (F(4, 42) = 2.63, p = .048, R2 = .20). This finding suggests peoples' unconscious (implicit) disability attitudes can be predicted by their conscious (explicit) disability attitudes, and their understandings of disability as lacking independence, impairment, and/or in relation to the norm. Figure 1 shows expected implicit prejudice based on the participants' explicit prejudice and these definitions of disability.

Figure of a graph that looks at the relationship between implicit and explicit disability attitudes. The y-axis is implicit attitude and the x-axis is explicit attitude. The y-axis ranges from 0 to 1.2, with an interval of .2. The x-asxis rages from 0 to 1 with an interval at .1. There are three diagonal lines all starting in the lower left corner and ending in the upper right corner. The dotted line represents defining disability in relation to the norm. The dashed line represents defining disability as lacking independence. The solid line represents defining disability at impairment. The dotted line is the highest starting at 0, 0.2. The dashed line is in the middle starting at 0, and approxiamtely 0.1. The solid line is the lowest start at 0, 0. The are three gray solid lines that run hoizontally across the table. The first gray line indicates a slight preference for nondisabled people and crosses the y-axis at approxiamtely the 0.17 mark. The second gray line indicates a moderate preference for nondisabled people and crosses the y-axis at approxiamtely the 0.36 mark. The third gray line indicates a strong preference for nondisabled people and crosses the y-axis at approxiamtely the 0.65 mark.

Figure 1. Expected implicit disability attitudes based on the linear regression model. Note this example does not explore interactions between multiple definitions. This figure is a graph showing how implicit attitudes increase by explicit attitudes and peoples' definitions of disability, particularly lacking independence, impairment, and in relation to the norm. All three of the definitions follows a linear pattern where the implicit prejudice of each gets higher as the explicit prejudice gets higher. The definition theme impairment produces the lowest values with lacking independence and in relation to the norm producing higher (in that order). Note this example does not explore interactions between multiple definitions.

According to this model, those who define disability in relation to the norm are expected to have higher implicit disability prejudice than those who define disability as lacking independence, or impairment. However, most people are still expected to implicitly prefer nondisabled people for all three of these themes.

No other definition themes from this study significantly related to implicit prejudice when combined with explicit prejudice.

Factors that Impact Meanings of Disability

To further tease out the relationship between understandings of and attitudes towards disability one aim of this study was to examine factors that impact how participants define disability. As such, regression models were run between the qualitative themes (i.e., preventing/slowing actions/tasks; lacking independence; challenges and difficulty; general difference; social construction; atypical function; limitation; impairment; lack of participation) and factors including political orientation, disability identity, participant in disability advocacy, etc. A binary logistic regression between years worked in a disability industry (zero for not applicable) significantly predicted defining disability as preventing/slowing action/tasks (-2LL = 54.13, Chi-square (1) = 7.39, p = 0.007. 55.3% of the cases are correctly predicted in the current data set.) Univariate analyses indicated that those who have not worked in a disability industry were significantly more likely to define disability as preventing/slowing action/tasks than those who have worked in a disability industry. According to the model, as the number of years worked in a disability industry increases, the odds of defining disability as preventing/slowing actions/tasks decreases. Figure 2 details the odds of defining disability in this way depending on if and how long people have worked in a disability industry.

Figure of a graph representing the probability of how an individual defines disability according to univariate statistics. The x-axis is Years worked in disability industry and ranges from 0 to 60 with an interval of 5. The y-axis is probability in percentage and ranges from 0 to 100 with an internal of 10. There are two curved lines. The solid line represents defines disability as preventing / slowing actions / tasks. The dotted line represents defines disability as general difference. The graphs starts with the dotted line at the 10% mark and the solid line at just above the 50% mark. The lines shift so that the solid line decreases and the dotted line increases. The lines cross at approxiamtely the 25%, 15 year mark. The solid line ends at close to 0% when at 60 years and the dotted line is above 90% when at 60 years.

Figure 2. The probability of defining disability in these ways according to univariate statistics. This figure shows how the odds of defining disability either as preventing/slowing actions/tasks or as a general difference change depending on how long a person has worked in a disability industry. While the probability of defining disability as preventing/slowing actions/tasks decreases when years in a disability industry increases, the opposite is true for defining disability as a general difference; that is the odds of defining it in this way increases as the years worked in a disability related industry increases.

Years worked in a disability industry also significantly predicted defining disability as a general difference in another binary logistic regression model (-2LL = 41.95, Chi-square (1) = 9.20, p = 0.002. 83% of the cases are correctly predicted in the current data set.) Univariate analyses indicated those who have not worked in a disability industry were significantly less likely to define disability as a general difference than those who have worked in a disability industry. As the number of years worked in a disability industry increases the odds of defining disability as a general difference increases. See figure 2.

All other factors (i.e., political orientation, disability status, participation in disability advocacy, gender, guardianship) were not significant with any other qualitative themes.

Discussion

Numerous meanings of disability were expressed in this study. For example, while a number of participants related disability to functioning and other individual differences, others provided more relationally-centered definitions related to reliance on others. Still others described social constructions and recognized larger social forces that shaped meanings of disability.

Although both explicit and implicit attitudes can play an integral part in peoples' 'true' attitudes, explicit (conscious) attitudes may not reveal all attitudes because people may not be aware they hold prejudiced views (Amodio & Mendoza, 2011; Antonak & Livneh, 2000). Implicit attitudes may be especially beneficial for exploring how understandings of disability relate to attitudes because implicit attitudes may relate to the internalization of external cues, learned associations, and social norms (Dovidio & Gaertner, 2004; Dovidio, Gaertner, Anastasio, & Sanitioso, 1992). We found a relationship between unconscious disability attitudes and understandings of disability as lacking independence, impairment, and in relation to the norm, when conscious prejudice was factored in. Defining disability in these ways reinforces individual difference as well as positions disability in opposition to the normate. Thus its not surprising that the majority of people that define disability in these ways are expected to unconsciously favor nondisabled people according to our model. There is a complicated interplay between peoples' conscious and unconscious disability attitudes. In fact, Friedman (2016) suggests the majority of people hold unconscious prejudice towards disabled people despite consciously having low levels of prejudice because of contemporary relationships between egalitarian values and systemic ableism, a combination that Friedman (2016) constructs as aversive ableism.

As the construction of disability meanings can be relational, we also explored factors that impact how people understand disability. There was a relationship between participation in disability related industries and either understanding disability as preventing/slowing actions/tasks or as a general difference. As the amount of time spent employed in a disability industry increased, the probability of defining disability as preventing/slowing actions/tasks decreased, and the probability of defining disability as a general difference increased. Disability-related industries, including various therapeutic professions, have long been critiqued by Disability Studies for often enacting and reinforcing certain individual and deficit-based understandings of disability (Finkelstein, 1981; Oliver, 1990) and for profiting from the commodification of disability (Albrecht, 1992). A unidimensional view of disability-related industries is problematic as they may play a more complex role in the social construction of disability than previously identified. Employment and engagement in disability-related industries may result in a unique intimacy with disability, which likely impacts peoples' views of disability over time. Thus, although people generally may be more likely to interpret disability related to an ideology of ability and functioning, experience with disability and disabled people may allow for more complex and multifaceted meanings of disability. This is borne out in our sample in that participants who had worked in a disability-related industry longer were more likely to define disability as a general difference that exists among people. The results described above, while not necessarily generalizable, hint at possible ways to, as Dan Goodley (2014) has suggested, "disrupt ableism" (p. x).

We found no other significant relationships between any other definition themes and other factors such as political orientation, disability identity, gender, etc. Although this serves as an invitation for future research, this non-finding in itself may serve as evidence for the complex ways disability is understood and interpreted in mainstream portrayals. That is to say, mapping the ways disability is defined – and understood – requires further contemplation. For example, unlike racial prejudice that has been found to have a relationship with political orientation (Dovidio, 2001; Dovidio & Gaertner, 2004; Dovidio et al., 1992; Sears & Henry, 2005), understanding disability in ways that are negative may transcend political orientation (Friedman, 2016). It may be that destructive disability portrayals, representations, and stereotypes are so prominent that they are commonly accepted and not viewed as negative. As such, most people are probably not conscious of the ways their understandings are problematic.

When interpreting our findings a number of limitations should be noted, largely related to our sample. Study participants were volunteers recruited through a national sibling organization, which produces a risk of self-selection bias. Another limitation was that all participants were siblings and thus were already engaged with disability to some extent. The sample was not representative of either the general population or of adult siblings as a whole, so our findings are not generalizable. The relationships between meanings, attitudes, and behavior are complex and long-debated. Given that disability as a set of meanings, and ableism as a disability-related social process are also incredibly complex, our study's methodology was not able to capture this complexity. Further research, and the proliferation of methodologies designed to capture and describe complexity, can and should continue to be developed.

Conclusion

This study took a mixed methods approach in exploring how the implicit and explicit attitudes of siblings of disabled people related to their definitions, and thus their understandings, of disability. Influenced and guided by Disability Studies theoretical concepts, we found that siblings defined disability as preventing or slowing action, atypical function, lack of independence, general difference, and socially constructed. Though participants expressed low explicit prejudice towards disabled people, on average, they held moderately prejudicial implicit attitudes towards disabled people. One important finding that can and should prompt future research is that employment in disability related industries is associated with defining disability as a general difference, rather than as deficit or impairment-based. The unique experiences of siblings as well as those employed in disability-related industries should be explored further.

References

  • Aaberg, V. A. (2012). A path to greater inclusivity through understanding implicit attitudes toward disability. The Journal of nursing education, 51(9), 505-510. https://doi.org/10.3928/01484834-20120706-02
  • Albrecht, G. L. (1992). The disability business: Rehabilitation in America (Vol. 190). New York: Sage Publications.
  • Amodio, D. M., & Mendoza, S. A. (2011). Implicit intergroup bias: cognitive, affective, and motivational underpinnings. In B. Gawronski & B. K. Payne (Eds.), Handbook of implicit social cognition: Measurement, theory, and applications (pp. 353-374). New York City: Guilford Press.
  • Antonak, R. F., & Livneh, H. (2000). Measurement of attitudes towards persons with disabilities. Disability and Rehabilitation, 22(5), 211-224. https://doi.org/10.1080/096382800296782
  • Archambault, M. E., Van Rhee, J. A., Marion, G. S., & Crandall, S. J. (2008). Utilizing Implicit Association Testing to Promote Awareness of Biases Regarding Age and Disability. Journal of Physician Assistant Education, 19(4). https://doi.org/10.1097/01367895-200819040-00003
  • Arnold, C. K., Heller, T., & Kramer, J. (2012). Support needs of siblings of people with developmental disabilities. Intellectual and developmental disabilities, 50(5), 373-382. https://doi.org/10.1352/1934-9556-50.5.373
  • Bell, A. K. (2013). Nothing about us without us: A qualitative investigation of the experiences of being a target of ableist microaggressions (Doctoral dissertation). John F. Kennedy University, Pleasant Hll, CA.
  • Bernard, H. R. (1996). Qualitative data, quantitative analysis. Cultural Anthropology Methods Journal, 8(1), 9-11.
  • Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative research in psychology, 3(2), 77-101. https://doi.org/10.1191/1478088706qp063oa
  • Burke, M. M., Taylor, J. L., Urbano, R., & Hodapp, R. M. (2012). Predictors of future caregiving by adult siblings of individuals with intellectual and developmental disabilities. American journal on intellectual and developmental disabilities, 117(1), 33-47. https://doi.org/10.1352/1944-7558-117.1.33
  • Campbell, F. A. K. (2008). Exploring internalized ableism using critical race theory. Disability & Society, 23(2), 151-162. https://doi.org/10.1080/09687590701841190
  • Campbell, F. K. (2009). Contours of ableism. Basingstoke, UK: Palgrave Macmillan. https://doi.org/10.1057/9780230245181
  • Charlton, J. (1998). Nothing About Us Without Us: Disability oppression and empowerment. Berkeley: University of California Press. https://doi.org/10.1525/california/9780520207950.001.0001
  • Chi, M. T. (1997). Quantifying qualitative analyses of verbal data: A practical guide. The journal of the learning sciences, 6(3), 271-315. https://doi.org/10.1207/s15327809jls0603_1
  • Daruwalla, P., & Darcy, S. (2005). Personal and societal attitudes to disability. Annals of Tourism Research, 32(3), 549-570. https://doi.org/10.1016/j.annals.2004.10.008
  • Davis, L. J. (1995). Enforcing normalcy: Disability, deafness and the body. New York: Verso Press.
  • Dovidio, J. F. (2001). On the nature of contemporary prejudice: The third wave. Journal of Social Issues, 57(4), 829-849. https://doi.org/10.1111/0022-4537.00244
  • Dovidio, J. F., & Gaertner, S. L. (2004). Aversive racism. Advances in Experimental Social Psychology, 36(1), 1-52. https://doi.org/10.1016/S0065-2601(04)36001-6
  • Dovidio, J. F., Gaertner, S. L., Anastasio, P. A., & Sanitioso, R. K. (1992). Cognitive and motivational bases of bias: Implications of aversive racism for attitudes toward Hispanics. In S. B. Knouse, P. Rosenfeld & A. Culbertson (Eds.), Hispanics in the workplace (pp. 75-106). Newbury Park, California: Sage Publications. https://doi.org/10.4135/9781483325996.n5
  • Eget, L. A. (2009). Siblings of those with developmental disabilities: career exploration and likelihood of choosing a helping profession (Doctoral dissertation). Indiana, PA: Indiana University of Pennsylvania.
  • Federici, S., & Meloni, F. (2009). Making decisions and judgments on disability: the disability representation of parents, teachers, and special needs educators. JEIC, 1, 20-26.
  • Fielding, N. G. (2012). Triangulation and mixed methods designs data integration with new research technologies. Journal of Mixed Methods Research, 6(2), 124-136. https://doi.org/10.1177/1558689812437101
  • Fine, M. E., Weis, L. E., Powell, L. C., & Wong, L. (1997). Off white: Readings on race, power, and society. Chicago: Taylor & Frances/Routledge.
  • Finkelstein, V. (1981). Disability and professional attitudes. Proceedings from RADAR Conference. Retrieved from http://www.leeds.ac.uk/disability-studies/archiveuk/finkelstein/Professional%20Attitudes.pdf.
  • Friedman, C. (2016). Aversive ableism: Subtle prejudice and discrimination towards disabled people (Doctoral dissertation). University of Illinois at Chicago, Chicago. Retrieved from http://hdl.handle.net/10027/20940
  • Friedman, C. (2017). Siblings of people with disabilities' explicit and implicit disability attitude divergence. Journal of Social Work in Disability & Rehabilitation, 17(1). http://dx.doi.org/10.1080/1536710X.2017.1260519
  • Friedman, C. & Awsumb, J. (in preparation). The Symbolic Ableism Scale.
  • Garland-Thomson, R. (1997). Extraordinary bodies: Figuring physical disability in American culture and literature. New York: Columbia University Press.
  • Garthwaite, K. (2011). 'The language of shirkers and scroungers?' Talking about illness, disability and coalition welfare reform. Disability & Society, 26(3), 369-372. https://doi.org/10.1080/09687599.2011.560420
  • Gill, C. J. (1997). Four types of integration in disability identity development. Journal of Vocational Rehabilitation, 9(1), 39-46. https://doi.org/10.1016/S1052-2263(97)00020-2
  • Goodley, D. (2014). Dis/ability studies: Theorising disablism and ableism. New York: Routledge.
  • Greenwald, A. G., McGhee, D. E., & Schwartz, J. L. K. (1998). Measuring individual differences in implicit cognition: The implicit association test. Journal of Personality and Social Psychology, 74(6), 1464-1480. https://doi.org/10.1037/0022-3514.74.6.1464
  • Greenwald, A. G., Nosek, B. A., & Banaji, M. R. (2003). Understanding and using the implicit association test: I. an improved scoring algorithm. Journal of Personality and Social Psychology, 85(12), 197-216. https://doi.org/10.1037/0022-3514.85.2.197
  • Griffiths, D. L., & Unger, D. G. (1994). Views about planning for the future among parents and siblings of adults with mental retardation. Family Relations, 221-227. https://doi.org/10.2307/585326
  • Hahn, H. (1985). Towards a politics of disability: Definitions, disciplines and policies. The Social Science Journal, 22(4), 97-105.
  • Harris, L. T., & Fiske, S. T. (2007). Social groups that elicit disgust are differentially processed in mPFC. Social Cognitive and Affective Neuroscience, 2(1), 45-51. https://doi.org/10.1093/scan/nsl037
  • Hehir, T. (2007). Confronting ableism. Educational Leadership, 64(5), 8-14.
  • Heller, T., & Arnold, C. K. (2010). Siblings of adults with developmental disabilities: Psychosocial outcomes, relationships, and future planning. Journal of Policy and Practice in Intellectual Disabilities, 7(1), 16-25. https://doi.org/10.1111/j.1741-1130.2010.00243.x
  • Heller, T., & Kramer, J. (2009). Involvement of adult siblings of persons with developmental disabilities in future planning. Intellectual and Developmental Disabilities, 47(3). https://doi.org/10.1352/1934-9556-47.3.208
  • Henry, P. J., & Sears, D. O. (2002). The symbolic racism 2000 scale. Political Psychology, 23(2), 253-283. https://doi.org/10.1111/0162-895X.00281
  • Jick, T. D. (1979). Mixing qualitative and quantitative methods: Triangulation in action. Administrative science quarterly, 602-611. https://doi.org/10.2307/2392366
  • Kafer, A. (2013). Feminist, Queer, Crip. Bloomington, IN: Indiana University Press.
  • Keller, R. M., & Galgay, C. E. (2010). Microaggressive experiences of people with disabilities. In D.W. Sue (Ed.), Microaggressions and marginality: Manifestation, dynamics, and impact, 241-268. New York: Wiley and Sons.
  • Kittay, E. F. (1999). Love's Labor: Essays on Women, Equality and Dependence. New York: Routledge.
  • Krefting, L. (1991). Rigor in qualitative research: The assessment of trustworthiness. American journal of occupational therapy, 45(3), 214-222. https://doi.org/10.5014/ajot.45.3.214
  • Kudlick, C. J. (2003). Disability history: Why we need another "other". The American Historical Review, 108(3), 763-793. https://doi.org/10.1086/529597
  • Linton, S. (1998). Claiming disability: Knowledge and identity. New York: NYU Press.
  • Quinn, G., & Degener, T. (2002). The moral authority for change: human rights values and the worldwide process of disability reform The Current Use and Future Potential of United Nations Human Rights Instruments in the Context of Disability (pp. 3-18). New York: United Nations.
  • Manhire, K. M., Hagan, A. E., & Floyd, S. A. (2007). A descriptive account of New Zealand mothers' responses to open-ended questions on their breast feeding experiences. Midwifery, 23(4), 372-381. https://doi.org/10.1016/j.midw.2006.01.002
  • Mauldin, L. (2014). Precarious plasticity neuropolitics, cochlear implants, and the redefinition of deafness. Science, Technology & Human Values, 39(1), 130-153. https://doi.org/10.1177/0162243913512538
  • Mauldin, L. (2016). Made to hear: Cochlear implants and raising deaf children. Minneapolis, MN: University of Minnesota Press. https://doi.org/10.5749/minnesota/9780816697243.001.0001
  • Meltzer, A., & Kramer, J. (2016). Siblinghood through disability studies perspectives: diversifying discourse and knowledge about siblings with and without disabilities. Disability & Society, 31(1), 17-32. https://doi.org/10.1080/09687599.2015.1127212
  • Nosek, B. A., Smyth, F. L., Hansen, J. J., Devos, T., Lindner, N. M., Ranganath, K. A., … Banaji, M. R. (2007). Pervasiveness and correlates of implicit attitudes and stereotypes. European Review of Social Psychology, 1(1), 1-53. https://doi.org/10.1080/10463280701489053
  • Oliver, M. (1990, July). The individual and social models of disability. In joint workshop of the living options Group and the Research Unit of the Royal College of Physicians (Vol. 23).
  • Oliver, M. (1996). The social model in context. Understanding Disability from Theory to Practice (pp. 30-42). New York: St. Martin's Press.
  • Ostrove, J. M., & Crawford, D. (2006). "One lady was so busy staring at me she walked into a wall": Interability relations from the perspective of women with disabilities. Disability Studies Quarterly, 26(3). https://doi.org/10.18061/dsq.v26i3.717
  • Overboe, J. (1999). 'Difference in itself': Validating disabled people's lived experience. Body & Society, 5(4), 17-29. https://doi.org/10.1177/1357034X99005004002
  • Palombi, B. (2012). Women with disabilities: The cultural context of disability, feminism, able-bodied privilege, and microaggressions. The Oxford Handbook of Feminist Counseling Psychology, 199. https://doi.org/10.1093/oxfordhb/9780199744220.013.0011
  • Proctor, S. N. (2011). Implicit bias, attributions, and emotions in decisions about parents with intellectual disabilities by child protection workers (Doctoral dissertation). Pennsylvania State University, University Park, PA.
  • Pruett, S. R. (2004). A psychometric validation of a disability attitude implicit association test. Madison: University of Wisconsin, Madison.
  • Pruett, S. R., & Chan, F. (2006). The development and psychometric validation of the Disability Attitude Implicit Association Test. Rehabilitation Psychology, 51(3), 202-213. https://doi.org/10.1037/0090-5550.51.3.202
  • Putnam, M. (2005). Conceptualizing disability developing a framework for political disability identity. Journal of Disability Policy Studies, 16(3), 188-198. https://doi.org/10.1177/10442073050160030601
  • Rogers, L.J. & Blue Swadener, B. (Eds.). (2001). Semiotics & dis/ability: Interrogating categories of difference. Albany, NY: SUNY Press.
  • Sandelowski, M., Voils, C. I., & Knafl, G. (2009). On quantitizing. Journal of Mixed Methods Research, 3(3), 208-222. https://doi.org/10.1177/1558689809334210
  • Sears, D. O., & Henry, P. J. (2005). Over thirty years later: A contemporary look at symbolic racism. Advances in experimental social psychology, Vol. 37. (pp. 95-150). San Diego, CA: Elsevier Academic Press.
  • Shildrick, M. (1997). Leaky bodies and boundaries: Feminism, postmodernism and (bio) ethics. New York: Psychology Press.
  • Siebers, T. (2008). Disability theory. Ann Arbor, MI: University of Michigan Press. https://doi.org/10.3998/mpub.309723
  • Snyder, S.L. & Mitchell, D. (2006). Cultural locations of disability. Chicago: University of Chicago Press. https://doi.org/10.7208/chicago/9780226767307.001.0001
  • Stewart, J., Harris, J., & Sapey, B. (1999). Disability and dependency: origins and futures of 'special needs' housing for disabled people. Disability & Society, 14(1), 5-20. https://doi.org/10.1080/09687599926343
  • Thomas, C. (2004). Rescuing a social relational understanding of disability. Scandinavian Journal of Disability Research, 6(1), 22-36. https://doi.org/10.1080/15017410409512637
  • Thomas, A., Vaughn, E. D., Doyle, A., & Bubb, R. (2013). Implicit association tests of attitudes toward persons with disabilities. The Journal of Experimental Education, 82(2), 184-204. https://doi.org/10.1080/00220973.2013.813357
  • Titchkosky, T. (2000). Disability studies: The old and the new. Canadian Journal of Sociology, 25(2), 197-224. https://doi.org/10.2307/3341823
  • Ward, T. (2007). Re-gendering data: Quantifying qualitative. Paper presented at the annual forum of the Association for Institutional Research, Atlanta, Georgia. Retrieved from http://www2.gsu.edu/~wwwire/pdf/Quantifying%20Qualitative%20Data.pdf.
  • White, M. J., Jackson, V., & Gordon, P. (2006). Implicit and explicit attitudes toward athletes with disabilities. Journal of Rehabilitation, 72(3).
  • Wolbring, G. (2008). The politics of ableism. Development, 51(2), 252-258. https://doi.org/10.1057/dev.2008.17
  • Young, F. W. (1981). Quantitative analysis of qualitative data. Psychometrika, 46(4), 357-388. https://doi.org/10.1007/BF02293796
Return to Top of Page