The Political Arithmetic of Disability and the American Family: A Demographic Perspective

The topic of disability and the family has a long and illustrious history, focused primarily on issues of coping and adaptation among one or more household members in response to the disability. This is a broad and deep literature, linked to the disciplinary roots of disability researchers in psychology and related fields. In contrast, our demographic understanding of disability in the family is rudimentary. Indeed, in the statistically intensive World Report on Disability (World Health Organization [WHO], 2011), the needs and interests of families were often mentioned, but hard data on family demographics were largely absent. As the reader will soon discover, disability applications have not gone much beyond the basic population summary. And so I proceed with this caveat: this article is less about a precise summation of known demographic facts than drawing inferences from a relatively sparse base of data. The approach taken here is to construct a composite portrait drawn from data sources employing varying sampling frames, subpopulations, and topical focus. The following statistical summaries are presented in the spirit of a ''political arithmetic'' (Clark, 1972) as a means to suggest significant common ground between the disability field and family policy generally rather than to identify some ''true count'' of families with disabilities.Much of the population-based research focused specifically on disability and the family has been reported from U.S. data systems (Altman & Blackwell, 2010; Altman, Cooper, & Cunningham, 1999; Collins & LeClere, 1996; Fujiura, 2010; LaPlante, Carlson, Kaye, B Parish, Rose, Grinstein-weiss, Richman, & Andrews, 2008; Wang, 2005), and to a lesser extent, in the United Kingdom and European Union (EU; Central Statistics Office of Ireland, 2010a; Dahlberg, Demack, & Bambra, 2007; National Health Service Information Centre, 2010; Sweeney & Furphy, 2008), and the high-income nations of the Pacific Rim (Australian Bureau of Statistics, 2003; Bray, 2001). A second set of demographic analyses are those for which families are only incidental to the intent of the study but provide additional data on different facets of family populations. These include studies of specific diagnostic populations such as intellectual and developmental disabilities (Fujiura, 1998; Larson, Doljanac, & Lakin, 2005), and those devoted to profiling specific disability subgroups such as autism (Montes & Halterman, 2008), or racial and ethnic groups (Fujiura, Yamaki, & Czechowicz, 1998) or children (Blackburn, Spencer, & Read, 2010; Parish et al., 2008). A notable omission is demographic data onwhat is likely the largest disability cohort in the world: persons living with families in the middle- and low-income nations. The central role played by the family and the network of kinship relations in supporting persons with disabilities in these regions of the world is singularly important (Emerson, Fujiura, & Hatton, 2007; Goldbart & Mukherjee, 1998; Handicap International Regional Office for Southeast Europe, 2004; McConkey, 2005; Miles, 2000; Mittler, 1990; Reynolds-Whyte, 1998; Stratford & Ng, 2000).COUNTING DISABILITYDisability is a contested construct, and the matter of definition must be addressed before consideration of statistical data. The Disability Statistics Database program of the United Nations created the first compendium of national census-based disability statistics. The summaries were remarkable primarily for the extraordinary range of reported disability prevalence, from 3 in 1,000 in Egypt to 142 per 1,000 population in the UnitedKingdom (United Nations, 1990). There are known variations in disability incidence and prevalence across regions, but the primary source of variance in these national estimates was the definitional concept employed by the surveillance systems (Fujiura & Rutkowski-Kmitta, 2001). Although an oversimplification of survey protocols, discrepancies in observed prevalence can be attributed to differences across three definitional conventions used in the statistical systems: (a) condition or impairment-based schemes, (b) limitations in specific life function or activities, and (c) ecological or contextual perspectives. …