Disability is Beautiful, Disability is my Culture

The stories of advocates in the disability rights movement remain largely undocumented, especially in the area of the arts. This research uses ethnographic fieldwork to document such stories in the interviewee's own words. The resulting portrait of disability, advocacy, and the arts also details the story of interviewee and interviewer, and of the fieldworking process as a whole. This thesis focuses on the life history and life story of musician Jim Whalen and his contributions to the disability rights and arts movement. The fieldstudy explores the stories, creations, beliefs, motives, feelings, philosophies, thoughts, and life histories, of not only Whalen but also of the researcher and others intersecting with Whalen's life and work, including writer Steve Kuusisto. An ethnographic methodology, including both in-depth interviews and participant observation, comprise the research design. The researcher uses the interdisciplinary-research tools of fieldwork in order to document and represent his findings. In this study, advocacy and art are understood as vehicles to reframe current notions about disability. In addition to insight into the disability rights movement at this point in time, the stories included provide an arsenal of techniques, concepts, and tools to help disability advocates understand, reframe, and renegotiate life experiences, in particular through art. In conjunction with reframing ideas such as "This is normal for me" and renegotiating experiences such as "Always stops right now," other advocacy tools discovered include "Summoning the dragon," "Not if, but how," and "Everyone has a why." The final product is part word portrait, part life history, part snapshot, part auto-ethnography, part biography, part oral history, part cultural history, part narrative, part ethnography --it is both an explanation and an ode to the two central themes from which the title is born: "Disability is my culture" and "Disability is beautiful.

Holding tight to the tail of a shooting star: an autoethnography of unschooling as just education

Unschooling in general, and in particular in North Carolina, remains an undocumented educational homeschooling experience. The absence of homeschool and unschooling stories may close off the possibility of choosing those options to those who might otherwise seek an educational alternative to public or private schooling, especially for those families with children who experience disability. I seek to articulate one experience of unschooling, so that the concept and available options can be better known and understood not only by parents seeking an alternative homeschool path, but by medical, educational, and service practitioners, and policy makers who might better serve families by knowing alternative schooling practices outside the context of compulsory public schools. Adding stories of unschooling adds a theoretical tool to the schooling experience that could be used to teach pre-service teachers, educate administrators and policy makers, and inspire families to realize that there are alternatives to public and private schooling, and that there are alternatives under the often monolith term of homeschooling. In addition, I focus on unschooling as an alternative space for both the typical student and the student who experience disability. In this dissertation I explore the unschooling experience by creating an autoethnography based on me and my immediate family’s experience over the past nine years doing homeschooling as unschooling. This example of autoethnography explores life on the margins of schooling practices, the tensions between inclusion and exclusion, access and equity, and the possibilities of unschooling as new space of liberation. The work uses critical theory and disability theory frameworks to inform its methodology and analysis

The Lynx X-Ray Observatory: Concept Study Overview and Status

Lynx, one of four strategic mission concepts under study for the 2020 Astrophysics Decadal Survey, will provide leaps in capability over previous and planned X-ray missions, and will provide synergistic observations in the 2030s to a multitude of space- and ground-based observatories across all wavelengths. Lynx will have orders of magnitude improvement in sensitivity, on-axis sub-arcsecond imaging with arcsecond angular resolution over a large field of view, and high-resolution spectroscopy for point-like and extended sources. The Lynx architecture enables a broad range of unique and compelling science, to be carried out mainly through a General Observer Program. This Program is envisioned to include detecting the very first supermassive black holes, revealing the high-energy drivers of galaxy and structure formation, characterizing the mechanisms that govern stellar activity - including effects on planet habitability, and exploring the highest redshift galaxy clusters. An overview and status of the Lynx concept are summarized

Lynx X-Ray Observatory: An Overview

Lynx, one of the four strategic mission concepts under study for the 2020 Astrophysics Decadal Survey, provides leaps in capability over previous and planned x-ray missions and provides synergistic observations in the 2030s to a multitude of space- and ground-based observatories across all wavelengths. Lynx provides orders of magnitude improvement in sensitivity, on-axis subarcsecond imaging with arcsecond angular resolution over a large field of view, and high-resolution spectroscopy for point-like and extended sources in the 0.2- to 10-keV range. The Lynx architecture enables a broad range of unique and compelling science to be carried out mainly through a General Observer Program. This program is envisioned to include detecting the very first seed black holes, revealing the high-energy drivers of galaxy formation and evolution, and characterizing the mechanisms that govern stellar evolution and stellar ecosystems. The Lynx optics and science instruments are carefully designed to optimize the science capability and, when combined, form an exciting architecture that utilizes relatively mature technologies for a cost that is compatible with the projected NASA Astrophysics budget

Social Movements in Urban Society: The City as A Space of Politicization

Recent anti-systemic social movements have illustrated the central role of cities in social movement mobilization. We not only highlight the characteristics of urban social relations that make cities fertile ground for mobilization, but also point to the disjunctures between the geographies and spatialities of social relations in the city, and the geographies and spatialities of many systemic processes. Struggles for a more just society must consider the broad geographies and spatialities of oppression, which we illustrate with a brief analysis of the Occupy movement. Finally, we introduce the next five articles in this special issue, all illustrating the importance of the geographies and spatialities of urban social struggle

Genome-wide association study of Tourette Syndrome

Tourette Syndrome (TS) is a developmental disorder that has one of the highest familial recurrence rates among neuropsychiatric diseases with complex inheritance. However, the identification of definitive TS susceptibility genes remains elusive. Here, we report the first genome-wide association study (GWAS) of TS in 1285 cases and 4964 ancestry-matched controls of European ancestry, including two European-derived population isolates, Ashkenazi Jews from North America and Israel, and French Canadians from Quebec, Canada. In a primary meta-analysis of GWAS data from these European ancestry samples, no markers achieved a genome-wide threshold of significance (p<5 × 10−8); the top signal was found in rs7868992 on chromosome 9q32 within COL27A1 (p=1.85 × 10−6). A secondary analysis including an additional 211 cases and 285 controls from two closely-related Latin-American population isolates from the Central Valley of Costa Rica and Antioquia, Colombia also identified rs7868992 as the top signal (p=3.6 × 10−7 for the combined sample of 1496 cases and 5249 controls following imputation with 1000 Genomes data). This study lays the groundwork for the eventual identification of common TS susceptibility variants in larger cohorts and helps to provide a more complete understanding of the full genetic architecture of this disorder

Winner's Curse Correction and Variable Thresholding Improve Performance of Polygenic Risk Modeling Based on Genome-Wide Association Study Summary-Level Data

Recent heritability analyses have indicated that genome-wide association studies (GWAS) have the potential to improve genetic risk prediction for complex diseases based on polygenic risk score (PRS), a simple modelling technique that can be implemented using summary-level data from the discovery samples. We herein propose modifications to improve the performance of PRS. We introduce threshold-dependent winner's-curse adjustments for marginal association coefficients that are used to weight the single-nucleotide polymorphisms (SNPs) in PRS. Further, as a way to incorporate external functional/annotation knowledge that could identify subsets of SNPs highly enriched for associations, we propose variable thresholds for SNPs selection. We applied our methods to GWAS summary-level data of 14 complex diseases. Across all diseases, a simple winner's curse correction uniformly led to enhancement of performance of the models, whereas incorporation of functional SNPs was beneficial only for selected diseases. Compared to the standard PRS algorithm, the proposed methods in combination led to notable gain in efficiency (25-50% increase in the prediction R2) for 5 of 14 diseases. As an example, for GWAS of type 2 diabetes, winner's curse correction improved prediction R2 from 2.29% based on the standard PRS to 3.10% (P = 0.0017) and incorporating functional annotation data further improved R2 to 3.53% (P = 2×10-5). Our simulation studies illustrate why differential treatment of certain categories of functional SNPs, even when shown to be highly enriched for GWAS-heritability, does not lead to proportionate improvement in genetic risk-prediction because of non-uniform linkage disequilibrium structure

Global, regional, and national incidence, prevalence, and years lived with disability for 328 diseases and injuries for 195 countries, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016

As mortality rates decline, life expectancy increases, and populations age, non-fatal outcomes of diseases and injuries are becoming a larger component of the global burden of disease. The Global Burden of Diseases, Injuries, and Risk Factors Study 2016 (GBD 2016) provides a comprehensive assessment of prevalence, incidence, and years lived with disability (YLDs) for 328 causes in 195 countries and territories from 1990 to 2016

Global, regional, and national disability-adjusted life-years (DALYs) for 333 diseases and injuries and healthy life expectancy (HALE) for 195 countries and territories, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016

BACKGROUND: Measurement of changes in health across locations is useful to compare and contrast changing epidemiological patterns against health system performance and identify specific needs for resource allocation in research, policy development, and programme decision making. Using the Global Burden of Diseases, Injuries, and Risk Factors Study 2016, we drew from two widely used summary measures to monitor such changes in population health: disability-adjusted life-years (DALYs) and healthy life expectancy (HALE). We used these measures to track trends and benchmark progress compared with expected trends on the basis of the Socio-demographic Index (SDI). METHODS: We used results from the Global Burden of Diseases, Injuries, and Risk Factors Study 2016 for all-cause mortality, cause-specific mortality, and non-fatal disease burden to derive HALE and DALYs by sex for 195 countries and territories from 1990 to 2016. We calculated DALYs by summing years of life lost and years of life lived with disability for each location, age group, sex, and year. We estimated HALE using age-specific death rates and years of life lived with disability per capita. We explored how DALYs and HALE differed from expected trends when compared with the SDI: the geometric mean of income per person, educational attainment in the population older than age 15 years, and total fertility rate. FINDINGS: The highest globally observed HALE at birth for both women and men was in Singapore, at 75·2 years (95% uncertainty interval 71·9-78·6) for females and 72·0 years (68·8-75·1) for males. The lowest for females was in the Central African Republic (45·6 years [42·0-49·5]) and for males was in Lesotho (41·5 years [39·0-44·0]). From 1990 to 2016, global HALE increased by an average of 6·24 years (5·97-6·48) for both sexes combined. Global HALE increased by 6·04 years (5·74-6·27) for males and 6·49 years (6·08-6·77) for females, whereas HALE at age 65 years increased by 1·78 years (1·61-1·93) for males and 1·96 years (1·69-2·13) for females. Total global DALYs remained largely unchanged from 1990 to 2016 (-2·3% [-5·9 to 0·9]), with decreases in communicable, maternal, neonatal, and nutritional (CMNN) disease DALYs offset by increased DALYs due to non-communicable diseases (NCDs). The exemplars, calculated as the five lowest ratios of observed to expected age-standardised DALY rates in 2016, were Nicaragua, Costa Rica, the Maldives, Peru, and Israel. The leading three causes of DALYs globally were ischaemic heart disease, cerebrovascular disease, and lower respiratory infections, comprising 16·1% of all DALYs. Total DALYs and age-standardised DALY rates due to most CMNN causes decreased from 1990 to 2016. Conversely, the total DALY burden rose for most NCDs; however, age-standardised DALY rates due to NCDs declined globally. INTERPRETATION: At a global level, DALYs and HALE continue to show improvements. At the same time, we observe that many populations are facing growing functional health loss. Rising SDI was associated with increases in cumulative years of life lived with disability and decreases in CMNN DALYs offset by increased NCD DALYs. Relative compression of morbidity highlights the importance of continued health interventions, which has changed in most locations in pace with the gross domestic product per person, education, and family planning. The analysis of DALYs and HALE and their relationship to SDI represents a robust framework with which to benchmark location-specific health performance. Country-specific drivers of disease burden, particularly for causes with higher-than-expected DALYs, should inform health policies, health system improvement initiatives, targeted prevention efforts, and development assistance for health, including financial and research investments for all countries, regardless of their level of sociodemographic development. The presence of countries that substantially outperform others suggests the need for increased scrutiny for proven examples of best practices, which can help to extend gains, whereas the presence of underperforming countries suggests the need for devotion of extra attention to health systems that need more robust support. FUNDING: Bill & Melinda Gates Foundation