Pamela Block

Fatigue and quality of life in pediatric multiple sclerosis

Fatigue and quality of life are significant concerns in adult multiple sclerosis (MS) but little is known about these factors in pediatric MS. The present investigation evaluates fatigue and quality of life in 51 pediatric MS patients to determine the rate of fatigue and reduced quality of life and assesses the relations between these variables and clinical factors. Fatigue and quality of life were assessed by self- and parent-report via the PedsQL Multidimensional Fatigue Scale and the PedsQL Quality of Life Scale. One-sample t-tests determined if scores were below published data for healthy individuals. Moreover, scores falling one standard deviation from norms were considered mildly affected, with severe difficulties being defined as scores falling two or more standard deviations from norms. Associations between self- and parent-reported difficulties and clinical factors were examined via Pearson correlation analyses. In comparison with healthy samples, pediatric MS patients reported greater difficulties with respect to fatigue, sleep, cognition, physical limitations, and academics. In addition to significant difficulties on these factors, parents reported problems with respect to emotional functioning, and tended to report greater fatigue, sleep, and cognitive difficulties than were self-reported. Expanded Disability Status Scale score was the only neurologic variable significantly related to fatigue or quality of life scores. Fatigue was significantly correlated with reports of sleep difficulties, cognitive problems, and quality of life variables. These findings suggest that fatigue and poorer quality of life is a clear concern in pediatric MS, and is related to overall physical disability.

Pilot study exploring quality of life and barriers to leisure-time physical activity in persons with moderate to severe multiple sclerosis.

BACKGROUND we sought to assess how impairment (physiological/psychological) and disability (social/environmental) are associated with physical and leisure/recreation activity levels and quality of life (QOL) in people with moderate/severe multiple sclerosis (MS). We conducted a cross-sectional survey at the MS Comprehensive Care Center, Stony Brook University Hospital, Stony Brook, NY, of a convenience sample of 43 people (50 eligible) with MS and Expanded Disability Status Scale scores of 6.0 to 8.0. The main outcome measures were QOL measured by MSQOL-54, physical activity measured by Physical Activity Disability Scale, and leisure/recreation activity measured by Nottingham Leisure Questionnaire. We analyzed the canonical correlations among physical and leisure/recreation activity levels and (1) impairment and (2) QOL. RESULTS higher levels of physical and leisure/recreation activity were associated with lower levels of apathy and depression and higher levels of cognition, self-efficacy, and QOL (physical and mental). Major barriers reported included fatigue, lack of motivation, and cost. CONCLUSION impairments and social/environmental disabilities create barriers to physical and leisure/recreation activity. Additional research is needed to determine, for people with MS, what supports might increase participation in physical and leisure/recreation activities and whether this increase yields improved QOL.

Sexuality, Fertility, and Danger: Twentieth-Century Images of Women with Cognitive Disabilities

Historically, women with cognitive disabilities in the United States have been portrayed as sexually and socially threatening, and in need of professional management and control. Expressions of concern over the “sexual nature” of this group are still present in medical, legal, and popular cultural discourse. This presentation considers five examples (four nonfiction and one fictional) where the sexual identities of women with cognitive disabilities received national scrutiny: the sterilization of Carrie Buck; the institutionalization of “Deborah Kallikak” the Glen Ridge sexual assault case; the sterilization of Cindy Wasiek; and the movie “The Other Sister.” These examples reveal that implicit cultural assumptions (modern fairy tales) about the sexuality and fertility of women with cognitive disabilities are embedded in United States history, and still very much in evidence today.

From Pathology to Power Rethinking Race, Poverty, and Disability

This paper explores the evolution of ideologies of race, poverty, and disability. Three models, identified as biological, cultural, and minority-group, are discussed. Throughout the twentieth century, biological and cultural models presented images of race, class, and disability in terms of deficiency and dependence. Biological models represented some minority groups as genetically inferior. Cultural models represented low-income minorities as trapped in an inescapable cycle of poverty. Both models represented minorities with disabilities as social victims or social threats or both. In contrast, the minority group model presents social and environmental explanations for continued economic disparity. However, this model does not adequately meet the needs of people of color with disabilities. Typically, disability is not included in theoretical formulations of race and class, whereas disability studies does not sufficiently consider the significance of racial, ethnic, and class differences. This paper presents an empowerment framework for considering the interrelation of race, class, and disability within the minority-group model of disability.

Shake-It-Up: Health promotion and capacity building for people with spinal cord injuries and related neurological disabilities

Purpose: This is a description of a model demonstration project called Project Shake-It-Up. This project promotes the health and empowerment of people with spinal cord injuries and related neurological disabilities. It also builds the capacity of community organizations that provide services to this population. Methods: Participants are involved in interactive seminars concerning health and advocacy on topics like nutrition and being assertive with healthcare providers. They take part in physical and recreational activities such as sea kayaking, kite-flying and hand cycling. Case coordinators support their project participation and personal goal attainment. Results: Community organizations and university researchers developed a successful partnership. Individual members of the first cohort supported one another and benefited physically and psychologically. Conclusions: Project-Shake-It-Up provides positive initial signs of the value of combining the resources of universities and community agencies. Working together, these organizations can develop distinctive, multi-faceted programmes to support the health and empowerment of people with spinal cord injuries and other related neurological disabilities.

Smoking rates and smoking cessation among individuals with multiple sclerosis.

Purpose. Adults with physical disabilities tend to smoke at higher rates than smokers in the general population. No study to date, however, has assessed smoking prevalence and cessation among individuals with multiple sclerosis (MS). Such information is critically needed because smoking is more deleterious for individuals with MS than for smokers without MS and increases MS risk. Method. Questionnaires were sent to 700 National Multiple Sclerosis Society Rhode Island Chapter members. Results. Based on a 50% response rate, results demonstrated a 15.2% current smoker prevalence rate, which is lower than USA and Rhode Island general adult population averages. Individuals who smoked, however, tended to be heavy smokers, consuming 20 – 30 cigarettes daily, and had been smoking 10 years or longer. Smokers varied in their interest in quitting but seemed confident in their ability to do so. Respondents reported that it was difficult to quit because smoking was pleasurable; smoking was helpful in coping with boredom and with having MS; withdrawal symptoms were unpleasant; and treatment for tobacco dependence was expensive. Conclusions. Efficacious smoking cessation interventions for smokers with MS should be developed to address a critical health need for a population of highly nicotine-dependent smokers who face numerous obstacles to quitting.

Sexuality, Parenthood, and Cognitive Disability in Brazil

This article will review the different methods used to control the sexuality and fertility of Brazilian women with cognitive disabilities throughout the twentieth century, and how practices such as eugenic sterilization, institutionalization, and other repressive measures of social control grew out of cultural notions of gender, race, class, sexuality, and disability. The article will first outline eugenics practices and the vulnerability of women with cognitive disabilities in the United States and Europe. It will then trace the historical treatment of Brazilian women with cognitive disabilities. Finally, it will describe modern cultural perceptions and practices related to the sexuality and fertility of Brazilian women with cognitive disabilities.

Deaf studies meets autistic studies

Abstract What might deaf studies and autistic studies have in common? Why, in many cases, is deafness considered to be a norm to be analyzed through linguistic and cultural frameworks, while autism is (still) seen as pathological? Utilizing ethnographic research, participation in two conferences on autism and sign language, and an analysis of deaf peoples’ and autistic peoples’ self-(re)presentation, we attend to sensory solidarities that might exist between deaf and autistic people, communities, and studies. We argue that an analysis of the two fields side-by-side offers important insights into new ways of conceptualizing sociality, identity, and community both in the specific cases of deafness and autism, and more broadly. Additionally, attending to deaf and autistic peoples’ language and communication desires and practices opens up analytic and empirical space for considering interdependent and multimodal communicative approaches.

Occupying Disability Studies in Brazil

The objective of this paper is to present a historical overview of the field of disability studies in Brazil. The approach takes into account the background of social models of disability and precursor scholarship in Brazil leading to the emergence of disability studies in the 2000s. It emphasizes the influence of key international scholars on their Brazilian counterparts and current research challenges for Brazilian disability studies.

Occupying Disability: An Introduction

Inspired by disability justice and the fall 2011 “Disability Occupy Wall Street/Decolonize Disability” movements in the US and related activism elsewhere, we are interested in politically engaged critical approaches to disability that intersect academic fields—principally occupational therapy, disability studies and anthropology—as well as community organizing and the arts. The “occupy” international movements claim collective identities as does Occupying Disability: Critical Approaches to Community, Justice, and Decolonizing Disability. International disability movements claim disability as a collective identity rather than a medical category and recognize the political and economic dimensions of disability inequity as it intersects with other sources of inequality. Different political positions have evolved within different disability perspectives, all of which demand audience. Working with them and understanding them requires broader social critiques not usually part of most clinical educations. Some activists would not, as a matter of principle, engage clinicians because of their unfettered access to agency and operations of power. Negotiation of separatist consciousness is a stage to forming identities in many political movements. Yet we, as editors and authors strive to move beyond simple binaries: the goal is true participation, meaningful occupation, and disability justice.