Reading Objects: Collections as Sites and Systems of Cultural Order

The political nature of making personal and cultural meaning of objects (both ordinary and aesthetic) is the site where transactions between our innate need for order and environmental influences, such as consumerism, are made. Valuing objects leads to the phenomena of collection, a subject that has been of interest in education and psychology since the nineteenth century. I ask how the private collections of children, and later adults, lead to systems of labeling, grouping, and display of art and artifacts in the art and natural history museum. In the age of the meta museum, how do educators question the museum\u27s colonial and patriarchal practices that remain current? I use postmodern feminism to challenge these practices because of its search for alternative ways of knowing and new representations of self

Re-imagining Inclusion/Exclusion: Unpacking Assumptions and Contradictions in Arts and Special Education from a Critical Disability Studies Perspective

Inclusion is usually defined “as a student with an identified disability, spending greater than 80% of his or her school day in a general education classroom in proximity to nondisabled peers” (Baglieri et al., 2011, p. 2125). This term, although seemingly benign and even beneficial, is nevertheless the outcome of polarized and divided terminologies. As a result, inclusion within the public school system can suggest not belonging. In this article I examine the invisible barriers to children’s full inclusion and participation hidden within the terminology and practices of special education, and suggest how the arts might be a natural ally in establishing student empowerment and equality in the classroom

Decentering Colonialism and Ableism in Artistic Practices

This article introduces the work of five young disabled artists, creative workers, and scholars of color, who the authors invited to be on a panel titled Decentering Colonialism and Ableism in Artistic Practices at the 3rd International Conference on Disability Studies, Arts, and Education. In this article, we focus on three intersecting and interconnected themes that were discussed during the panel: crip time/wisdom, colonialism, and care. The artists work against colonial knowledge through lived experiences and desires that resist ableist, white, and normative structures. The power of artmaking materializes ideas through their bodies, writings, performances, and images through multiple media and technologies that elucidate the disabled bodymind conditions. The authors acknowledge how differently the pandemic allowed care to be offered for disabled, queer, Black, Indigenous, and people of color (BIPOC), particularly considering how black and brown people often provide the networks of care. We argue that the intersecting themes of crip time, colonialism, and care are significant for human ethical values and social justice

Disability Justice: Decentering Colonial Knowledge, Centering Decolonial Epistemologies

This thematic issue of Research in Arts and Education derives from the presentations and keynote addresses of the 3rd International Disability Studies, Arts & Education Conference (DSAE). In light of the ongoing global pandemic, the conference was held online for the first time from October 7 to October 9, 2021. In preparation for the conference, we recognized how the pandemic had fore-fronted social justice in disability studies, art education, and society: the inequity of economic resources, the exploitation of the most vulnerable people, systemic racism, and the disproportionate effects of climate change on non-industrial countries. The intersection of racial, able-bodied, ethnic, sexual, cultural, gendered, environmental, and economic power disparities are interlocking oppressions that cannot be detached from colonial history. Decolonial work is foregrounded in the lived realities of marginalized people who diverge from neurotypical and dominant systems. Thus, these issues were threaded throughout the conference presentations

Incidence of adult Huntington's disease in the UK: a UK-based primary care study and a systematic review.

OBJECTIVES: The prevalence of Huntington's disease (HD) recorded in the UK primary care records has increased twofold between 1990 and 2010. This investigation was undertaken to assess whether this might be due to an increased incidence. We have also undertaken a systematic review of published estimates of the incidence of HD. SETTING: Incident patients with a new diagnosis of HD were identified from the primary care records of the Clinical Practice Research Datalink (CPRD). The systematic review included all published estimates of the incidence of HD in defined populations. PARTICIPANTS: A total of 393 incident cases of HD were identified from the CPRD database between 1990 and 2010 from a total population of 9,282,126 persons. PRIMARY AND SECONDARY OUTCOME MEASURES: The incidence of HD per million person-years was estimated. From the systematic review, the extent of heterogeneity of published estimates of the incidence of HD was examined using the I(2) statistic. RESULTS: The data showed that the incidence of HD has remained constant between 1990 and 2010 with an overall rate of 7.2 (95% CI 6.5 to 7.9) per million person-years. The systematic review identified 14 independent estimates of incidence with substantial heterogeneity and consistently lower rates reported in studies from East Asia compared with those from Australia, North America and some--though not all--those from Europe. Differences in incidence estimates did not appear to be explained solely by differences in case ascertainment or diagnostic methods. CONCLUSIONS: The rise in the prevalence of diagnosed HD in the UK, between 1990 and 2010, cannot be attributed to an increase in incidence. Globally, estimates of the incidence of HD show evidence of substantial heterogeneity with consistently lower rates in East Asia and parts of Europe. Modifiers may play an important role in determining the vulnerability of different populations to expansions of the HD allele

Studying Stigma, Medicine, and Huntington’s Disease

My current work continues the study of stigma, medicine, and hereditary neurological and psychiatric Huntington’s disease that I began in 1995 "Mapping Fate: A Memoir of Family, Risk, and Genetic Research" (UC Press, 1995). But whereas Mapping Fate is autobiographical and contemporary, my most recent book, "The Woman who Walked into the Sea: Huntington’s and the Making of a Genetic Disease" takes a more historical approach. Published in 2008 by Yale University Press and awarded the American Medical Writers’ Book Award for 2008, this book traces the ways in which an unusual form of “St.Vitus’s dance” became Huntington’s chorea and movements and cognitive and emotional decline. In tracking these changes over the nineteenth and early twentieth and historical narratives of the disease made women a source and scapegoat for Huntington’s—although the disease affects males and females in equal HD families as undesirable citizens, thereby encouraging the family secrecy and denial that medicine ostensibly sought to overcome