Why Demographics Matter: Disability Identity, Disability Community, and Reducing Disparities

Posted on February 7, 2018

By Carli Friedman, CQL Director of Research

As part of the Personal Outcome Measures® we ask organizations to collect information about the demographics (disability, gender, race/ethnicity, etc.) of the person they are interviewing. Occasionally, we hear from people that they do not like collecting demographic information because it feels like “categorizing people” or “labeling people.” In this article we will discuss why that outlook is based on problematic assumptions, as well as the importance of demographic data in order to reduce quality of life disparities.

Disability Identity and Community

Fears of categorizing people as having disabilities stem from ableist underpinnings. One would not give a second thought to identifying a person as a person of color or a woman – from another social minority group – so what is wrong with identifying someone as a person with a disability? The impulse to shy away from identifying someone as having a disability is because of implicit negative connotations. While perhaps well-meaning, language such as ‘differently abled,’ ‘special,’ or ‘handicapable,’ not only imply there is something wrong with having a disability by trying to avoid disability, but also, in an attempt to avoid stereotypes about incompetence or other negative qualities, serves to reinforce them (Linton, 1998).

Trying to create distance from disability also does something more harmful, it individualizes disability, defining it as a deficit the person “suffers” from (in the context of deviance), rather than recognizing disability as a natural part of human variation. As disabled scholar Simi Linton (1998) explains, disability exists “in a complex web of social ideals, institutional structures, and government policies” (p. 10). When disability is individualized, it becomes depoliticized; depoliticized disability is problematic not only because it ignores the social minority group aspect, but it is also harmful because disability is “presented as a fact of life requiring determination and courage, not in terms of a system marking some bodies, ways of thinking and patterns of movement as deviant and unworthy” (Kafer, 2013, p. 89). When individualized and thus depoliticized, it “makes it easier for most people to read this kind of [homage] to personal responsibility as apolitical and benign” (Kafer, 2013, p. 96). People with disabilities are oppressed because their treatment is related to ideology that justifies and perpetrates difference; however, their disadvantages are not inevitable.

Reframing disability as an identity, and separating it from impairment, aims to take back some of the power from oppressive language and the stereotypes it creates. According to disabled scholar Tom Shakespeare, “‘identity is an aspect of the stories we tell ourselves, to others… Previously there was a limited range of narrative devices and themes available to people with impairment; now, new stories are being told, and we are creating ourselves for ourselves, rather than relying on the traditional narratives of biomedical intervention or rehabilitation, of misery, decline and death. Doing it for ourselves, perhaps we can reconcile tensions and produce alternative, happier endings’” (Young & Quibell, 2000, p. 761). When disability is redefined in terms of an identity and community, “people with a variety of conditions are identified as people with disabilities or disabled people, a group bound by common social and political experience. These designations, as reclaimed by the community, are used to identify us as a constituency, to serve our needs for unity and identity, and to function as a basis for political activism” (Linton, 1998, p. 12). In fact, this is one of the reasons many people with disabilities have begun using identity first language (e.g., “disabled people”) rather than person first language (e.g., “people with disabilities”)¹. (This is why the disabled scholars above are identified using identity first language.)

Acknowledging people with disabilities as a social minority group is important; claims that ‘people with disabilities are just like everyone else’ are problematic akin to saying ‘I do not see race.’ While perhaps well-meaning, this type of ‘colorblindness’ is a form of “societal denial” (Lawrence, 1995, p. 6). Indeed, research has confirmed this outlook not only does not reduce prejudice, it also is a form of privilege and prejudice (Armstrong & Wildman, 2008; Correll, Park, & Smith, 2008; Lawrence, 1995).

Recognizing disability as an identity – rather than something that just impacts individual people – and a social minority group does not deny the uniqueness of each person. There is a difference between the individual supports invoked in person-centered planning, and individualization. Person-centered planning and the Personal Outcome Measures® emphasize that supports should be tailored to that person because of the tendency to assume all people with disabilities are the same or need the same things. Like nondisabled people, people with disabilities are all different. However, this reminder to customize and tailor services is not an attempt to ignore the larger sociopolitical identities or communities of people with disabilities. Rather, it is an attempt to ensure we do not become complacent and follow traditional paths just because that’s what we’ve always done – determining what matters to individual people does not negate that they are also part of communities. The best way to do so is to tailor supports while also recognizing the person’s identities and communities.

How Demographics Can Help Us Identify Disparities

In addition to their importance as a “marker of identity” (Linton, 1998, p. 12), demographic information is also critical to address inequalities in service provision. Not only do social minority groups, such as people with disabilities, often face disparities in service provision compared to social majority groups, there are also disparities within the disability community itself. For example, people with more severe impairments often face service disparities, and as a result are less likely to have equal opportunities compared to those people with less severe impairments. Moreover, people who are from multiple identity groups are often doubly disadvantaged.

The purpose of collecting demographic data during Personal Outcome Measures® interviews is to help you determine where disparities exist and figure out the best ways to support people accordingly. CQL’s PORTAL Data System can be used to do both. For example, using PORTAL’s analytics reports and filters I am able to determine that Latinx people with disabilities are significantly less likely to interact with other members of the community than White people with disabilities (43.1% versus 62.4%; see figures). If this was my agency, I would provide targeted supports to Latinx people to ensure they have equal opportunities to interact with others in the community.

Interact with Other Members of the Community: Latinx People with Disabilities

Interact with Other Members of the Community: White People with Disabilities

Another example is the disparity between women and men in ‘respect’ outcomes. By filtering Personal Outcome Measures® data by gender I find that men are significantly more likely to be respected than women (55.9% versus 50.1%; see figures). If this was my agency, I would examine our practices to ensure they provide the same opportunities to women as men, as well as examine any attitudes or stereotypes that may impact the way we provide supports.

Respect: Men with Disabilities

Respect: Women with Disabilities

These are just a few examples; there are many other service disparities that can be explored using demographic data, such as by support needs, decision-making authority, setting, etc. By paying attention to both individual characteristics, and larger identities and communities, we can work to ensure the best possible quality of life of people with disabilities.

Recommended Reading:

• Linton, S. (1998). Claiming disability, knowledge and identity. New York: New York University Press.
• Gill, Carol. (1994). A bicultural framework for understanding disability. The Family Psychologist, Fall, 13-16.
• Baynton, D. C. (2001). Disability and the justification of inequality in American history. In P. Longmore & L. Umansky (Eds.), The new disability history: American perspectives (pp. 33-57). New York: University Press.
• Kafer, A. (2013). Feminist, queer, crip. Bloomington, IN: Indiana University Press.

References:

• Armstrong, M. J., & Wildman, S. M. (2008). Teaching race/teaching Whiteness: Transforming colorblindness to color insight. Santa Clara Univ. Legal Studies Research Paper(08-51).
• Correll, J., Park, B., & Smith, J. A. (2008). Colorblind and multicultural prejudice reduction strategies in high-conflict situations. Group Processes & Intergroup Relations, 11(4), 471-491.
• Kafer, A. (2013). Feminist, queer, crip. Bloomington, IN: Indiana University Press.
• Lawrence, C. R. (1995). The epidemiology of color-blindness: Learning to think and talk about race, again. Boston College Third World Law Journal, 15(1), 1-19.
• Linton, S. (1998). Claiming disability, knowledge and identity. New York: New York University Press.
• Spassiani, N. A., & Friedman, C. (2014). Stigma: Barriers to culture and identity for people with intellectual disability. Inclusion, 2(4), 329-341.
• Young, D. A., & Quibell, R. (2000). Why rights are never enough: Rights, intellectual disability and understanding. Disability & Society, 15(5), 747-764. doi:10.1080/713661998

¹ This switch to identity first language has been less prominent in the intellectual and developmental disabilities communities because of a long history of the R-word, oppression, and stigma; see Spassiani & Friedman (2014).