Journal articles on the topic 'Counselors – Latin America'

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1

LeBlanc, Sandra, and Julie F. Smart. "Power, Perception, and Privilege: White Privilege and the Rehabilitation of Mexican Americans." Journal of Applied Rehabilitation Counseling 36, no. 2 (June 1, 2005): 12–19. http://dx.doi.org/10.1891/0047-2220.36.2.12.

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Rehabilitation counselors are gatekeepers to services in the state/federal vocational rehabilitation agency. Further, it is safe to state that the majority of these counselors are white, non-Hispanic Americans. Juxtaposed with these twin realities is the growing number of Hispanic/Latino Americans with disabilities, the greatest number of whom are of Mexican origin. Therefore, it becomes necessary for rehabilitation counselors to examine the concepts, history, and results of white privilege. In rehabilitation, white privilege may affect the higher rates of disabilities experienced by Mexican Americans and the fact that once Mexican Americans acquire these disabilities, they experience more secondary conditions and complications (than white, non-Hispanics). Acceptance for services in the state/federal VR system can be influenced by white privilege. Once accepted for services, white privilege can create distance and a power differential between the rehabilitation counselor and the Mexican American client. In addition, biases and inaccurate (and unconscious) perceptions of the counselor may lead to inaccurate assessments and underestimation of the Mexican American client's potential for rehabilitation. Practice recommendations which empower the Mexican American client are presented.
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Tiburcio, Marcela, Ma Asunción Lara, Araceli Aguilar Abrego, Morise Fernández, Nora Martínez Vélez, and Alejandro Sánchez. "Web-Based Intervention to Reduce Substance Abuse and Depressive Symptoms in Mexico: Development and Usability Test." JMIR Mental Health 3, no. 3 (September 29, 2016): e47. http://dx.doi.org/10.2196/mental.6001.

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Background The development of Web-based interventions for substance abuse in Latin America is a new field of interest with great potential for expansion to other Spanish-speaking countries. Objective This paper describes a project aimed to develop and evaluate the usability of the Web-based Help Program for Drug Abuse and Depression (Programa de Ayuda para Abuso de Drogas y Depresión, PAADD, in Spanish) and also to construct a systematic frame of reference for the development of future Web-based programs. Methods The PAADD aims to reduce substance use and depressive symptoms with cognitive behavioral techniques translated into Web applications, aided by the participation of a counselor to provide support and guidance. This Web-based intervention includes 4 steps: (1) My Starting Point, (2) Where Do I Want to Be? (3) Strategies for Change, and (4) Maintaining Change. The development of the program was an interactive multistage process. The first stage defined the core structure and contents, which were validated in stage 2 by a group of 8 experts in addiction treatment. Programming of the applications took place in stage 3, taking into account 3 types of end users: administrators, counselors, and substance users. Stage 4 consisted of functionality testing. In stage 5, a total of 9 health professionals and 20 drug users currently in treatment voluntarily interacted with the program in a usability test, providing feedback about adjustments needed to improve users’ experience. Results The main finding of stage 2 was the consensus of the health professionals about the cognitive behavioral strategies and techniques included in PAADD being appropriate for changing substance use behaviors. In stage 5, the health professionals found the functionalities easy to learn; their suggestions were related to the page layout, inclusion of confirmation messages at the end of activities, avoiding “read more” links, and providing feedback about every activity. On the other hand, the users said the information presented within the modules was easy to follow and suggested more dynamic features with concrete instructions and feedback. Conclusions The resulting Web-based program may have advantages over traditional face-to-face therapies owing to its low cost, wide accessibility, anonymity, and independence of time and distance factors. The detailed description of the process of designing a Web-based program is an important contribution to others interested in this field. The potential benefits must be verified in specific studies. Trial Registration International Standard Randomized Controlled Trial Number (ISRCTN): 25429892; http://www.controlled-trials.com/ISRCTN25429892 (Archived by WebCite at http://www.webcitation.org/6ko1Fsvym)
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Ohrt, Jonathan H., Glenn W. Lambie, and Kara P. Ieva. "Supporting Latino and African-American Students in Advanced Placement Courses: A School Counseling Program's Approach." Professional School Counseling 13, no. 1 (October 2009): 2156759X0901300. http://dx.doi.org/10.1177/2156759x0901300104.

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Traditionally, Latino and African-American students have been underrepresented in Advanced Placement courses. However, professional school counselors work to remove barriers to all students’ success. This article (a) identifies challenges that Latino and African-American students encounter in accessing Advanced Placement courses, (b) reviews the role of professional school counselors in serving traditionally disenfranchised student populations, and (c) intro-duces a school counseling program's approach to supporting these students and their families.
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Vega, Desireé, and James L. Moore III. "Access to gifted education among African-American and Latino males." Journal for Multicultural Education 12, no. 3 (August 13, 2018): 237–48. http://dx.doi.org/10.1108/jme-01-2017-0006.

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Purpose Across the nation, African-American and Latino males have experienced limited access to placement in gifted education programs. This paper aims to pinpoint and describe the factors that frequently influence access to gifted education programming among African-American and Latino males. Design/methodology/approach African-American and Latino males are persistently underrepresented in gifted education for reasons such as teachers’ narrow conceptions of giftedness, teachers’ bias in the nomination process and teachers’ inappropriate usage and interpretation of intelligence measures. When these students qualify for such services, they often experience feelings of isolation and loneliness due to scarce representation of other African-American and Latino male students. A review of extant literature was conducted to identify factors that influence access to gifted education programming among African-American and Latino males. Findings African-American and Latino males encounter roadblocks in being identified for gifted placement and many also experience implicit biases and stereotypical beliefs about their ability. The need for culturally competent professionals is critical to meet the academic and social-emotional needs of gifted African-American and Latino males. Practical implications Recommendations for school psychologists and school counselors are offered to support the needs of gifted African-American and Latino males, assist in increasing their identification and participation in gifted education, and promote academic success. Originality/value There is an urgent need for research on access and placement in gifted programming among African-American and Latino males. Moreover, the role of school psychologists and school counselors should be considered in facilitation of gifted identification and placement.
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Hampton, Nan Zhang, and Yanan Zhu. "Gender, Culture, and Attitudes Toward People with Psychiatric Disabilities." Journal of Applied Rehabilitation Counseling 42, no. 3 (September 1, 2011): 12–19. http://dx.doi.org/10.1891/0047-2220.42.3.12.

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The purpose of the study was to examine the effects of gender and culture on attitudes toward people with psychiatric disabilities (PWPD). Two hundred and forty university students from Asian, Latino, and European American cultural backgrounds participated in the study. The Opinions about Mental Illness scale was used to measure attitudes, and the Level of Contact Scale was used to measure the covariant – contact with PWPD. A 2 (gender) x 3 (culture) MANCOVA was performed. Results indicated that female students in all three ethnic groups had more positive attitudes toward PWPD than did male students. Of the three ethnic cultural groups, European American students had the most positive view of PWPD, and Latino American students had the least positive view of PWPD. Implications of the results for rehabilitation counselors and researchers are discussed.
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Dailey, Stephanie F., Maggie M. Parker, A. Diona Emmanuel, and Andrew Campbell. "Mental Health and COVID-19: Symptom Prevalence, Sociodemographic Associations, and Implications for Practice." Journal of Mental Health Counseling 44, no. 4 (October 1, 2022): 343–61. http://dx.doi.org/10.17744/mehc.44.4.05.

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The COVID-19 pandemic has had an unprecedented impact on mental health. The current study examined symptoms of depression and anxiety and sociodemographic factors associated with increased symptoms among 1,242 adults under the same state-issued stay-at-home mandate. Mean anxiety and depression scores were 58.07 ± 9.6 and 55.18 ± 10.49, with the majority of participants indicating clinically significant symptoms of anxiety (n = 831, 66.90%) and depression (n = 652, 52.49%). African American and Latino/a American participants, individuals under the age of 45, and unemployed individuals or persons working in professional jobs presented with the most significant risk for adverse outcomes. Implications highlight the vital role of clinical mental health counselors in supporting at-risk populations and the need for future research supporting prevention-based, culturally appropriate screening and treatment protocols.
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Santos, Ellen Caroline Da Silva, and Jair Magalhães Da Silva. "Função do Conselho de Saúde e Conhecimento de Trabalhadores e Conselheiros de Saúde: uma Revisão Integrativa." UNICIÊNCIAS 23, no. 1 (June 30, 2019): 60. http://dx.doi.org/10.17921/1415-5141.2019v23n1p60-64.

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O presente estudo tem o objetivo de identificar a função do Conselho de Saúde, e o conhecimento de trabalhadores e de conselheiros de saúde sobre o mecanismo de controle social, por meio de uma revisão integrativa. Os estudos foram selecionados por meio de buscas na base de dados Literatura Latino-Americano e do Caribe em Ciências da Saúde (Lilacs) e na biblioteca eletrônica Scientific Electronic Library Online (SciELO), utilizando como descritores para a busca dos artigos: Participação social; Conselhos de saúde; Controle social; Política de saúde. Foram selecionados dez estudos publicados entre 2013 e 2018, publicados em português e na íntegra, e que abordassem sobre a temática. Evidencia-se a necessidade de conhecimento sobre os Conselhos, por parte dos trabalhadores da saúde e falta de capacitação por parte dos usuários que compõem o Conselho de Saúde (CS), o que dificulta uma participação representativa e efetiva do segmento representado. Diante das lacunas encontradas na literatura e a falta de conhecimento, pela maioria dos trabalhadores da saúde e de conselheiros de saúde, faz-se necessário a realização de novas pesquisas sobre a temática e investimentos em capacitações para trabalhadores de saúde e conselheiros. Palavras-chave: Conselho de Saúde. Trabalhador da Saúde. Conselheiros de Saúde.AbstractThis study aims to identify the role of the health council and the workers’ and health counselors’ knowledge about the mechanism of social control, through an integrative review. The studies were selected through studies in the Latin American and Caribbean Literature in Health Sciences database (LILACS) and in the electronic library Scientific Electronic Library Online (SciELO), using as descriptors for searching the articles: Social participation; Health Council; Social control; Health policy. tem Ten studies were selected, published between 2013 and 2018, in Portuguese and in full, that discussed on the subject. It is evidenced the need of knowledge about the councils, on the part of the health workers and lack of qualification by the users that compose the health council, what hinders a representative and effective participation of the represented segment. Given the gaps found in the literature and the lack of knowledge by the majority of health workers and health advisors, it is necessary to carry out new research on the subject and investments in training for health workers and counselors.Keywords: Health Council. Health Worker. Health Counselors.
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Whitworth, Pat, Peter Beitsch, Christopher Arnell, Hannah C. Cox, Krystal Brown, John Kidd, and Johnathan M. Lancaster. "Impact of Payer Constraints on Access to Genetic Testing." Journal of Oncology Practice 13, no. 1 (January 2017): e47-e56. http://dx.doi.org/10.1200/jop.2016.013581.

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Background: With increased demand for hereditary cancer genetic testing, some large national health-care insurance payers (LNHPs) have implemented policies to minimize inappropriate testing by mandating consultation with a geneticist or genetic counselor (GC). We hypothesized such a restriction would reduce access and appropriate testing. Methods: Test cancellation rates (ie, tests ordered that did not result in a reported test result), mutation-positive rates, and turnaround times for comprehensive BRCA1/2 testing for a study LNHP that implemented a GC-mandate policy were determined over the 12 months before and after policy implementation (excluding a 4-month transition period). Cancellation rates were evaluated based on the reason for cancellation, National Comprehensive Cancer Network testing criteria, and self-identified ancestry. A control LNHP was evaluated over the same period for comparison. Results: The study LNHP cancellation rate increased from 13.3% to 42.1% ( P < .001) after policy implementation. This increase was also observed when only individuals who met National Comprehensive Cancer Network criteria for hereditary breast and ovarian cancer testing were considered (9.5% to 37.7%; P < .001). Cancellation rates increased after policy introduction for all ancestries; however, this was more pronounced among individuals of African or Latin American ancestry, for whom cancellation rates rose to 48.9% and 49.6%, respectively, compared with 33.9% for individuals of European ancestry. Over this same time period, control LNHP cancellation rates decreased or stayed the same for all subgroups. Conclusion: These findings demonstrate that a GC-mandate policy implemented by a LNHP substantially decreased access to appropriate genetic testing, disproportionately impacting minority populations without any evidence that inappropriate testing was decreased.
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Stephan, Jennifer L. "Social Capital and the College Enrollment Process: How Can a School Program Make a Difference?" Teachers College Record: The Voice of Scholarship in Education 115, no. 4 (April 2013): 1–39. http://dx.doi.org/10.1177/016146811311500407.

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Background College attendance has become a crucial determinant of life chances in U.S. society. Besides college costs and academic preparation, college-related cultural and social capital may help explain socioeconomic differences in whether and where students attend college. While high school counselors are seen as potential agents of social capital, the standard counseling model, developed to serve middle-class students, may not translate effectively to schools serving disadvantaged students. The college coach program, introduced in 12 non-selective Chicago Public Schools (CPS) in the fall of 2004, provides an alternative model. In contrast to the standard high school counseling model, college coaches take a “community organizer” role in assisting the college enrollment process. Statistical difference-in-differences analysis suggests that coaches may have improved the kinds of colleges that students attended, particularly for less advantaged students (Stephan, 2010). Purpose This qualitative study describes how the coach program works and analyzes key aspects that may explain its positive relationship with college enrollment outcomes. Participants Interviews were conducted between the spring of 2006 and spring of 2007 with 9 current and former college coaches, 2 postsecondary specialists (to whom the coaches report), and 30 high school seniors in 2 coach schools, which, like other non-selective CPS high schools, serve students who are predominantly African American or Latino and low-income. Research Design Responses to semi-structured interviews with coaches and students were coded for recurring themes and according to interview questions. A model of how coaches create social capital emerged from iterations between coding interviews and studying previous research on the creation of social capital. Conclusions The results suggest that coaches use new advising strategies (different from typical school counseling practices) to increase students’ college-related social capital and subsequently increase the number of students completing college actions, which may explain improved enrollment outcomes. This research highlights previously tacit assumptions about how counseling should work and details new advising procedures that may benefit disad-vantaged students in the college enrollment process. More generally, this research discusses specific social mechanisms through which policy or institutions may create social capital to improve educational attainment.
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Gluck, Larry, Armand DeSollar, Matthew Hudson, LeAnn Perkins, Julia Yates, Susan Webb, and Gina Franco. "Abstract P034: Prevent Cancer-Greenville: identifying and influencing cancer risk." Cancer Prevention Research 16, no. 1_Supplement (January 1, 2023): P034. http://dx.doi.org/10.1158/1940-6215.precprev22-p034.

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Abstract Purpose: Prevent Cancer - Greenville started in 2018 and provides study participants the opportunity to have their risk of developing cancer stratified into a personalized plan of screening and behavior modification as well as contribute to longitudinal cancer prevention research. Prevent Cancer - Greenville’s dual objectives include a participant educational focus based on individual risks as well as a long-term research objective of correlation of lifestyle and environmental influences on an individual’s molecular constitution and for those affected, the development of a cancer. Methods: Volunteer participants are accrued through open enrollment which is promoted through Prisma News, printed and online news articles, community events and a listing on the National Institute of Health clinicaltrials.gov website. Participants must be at least 18 years of age and must speak English to enroll. Enrollees participate in a yearly risk assessment, including diet, exercise, body composition using bioimpedance spectroscopy, and individual risk factors, with the data banked in a longitudinal manner. At each yearly visit, blood, urine, and buccal swab specimens are collected and stored along with participant’s lifestyle habits, body composition, and medical history as discrete data points. The potential to store thousands of participants’ specimens yearly for a decade or more creates an opportunity to retrospectively identify the likely multiple and sequential molecular events leading to the development of cancer. In short, patients eventually developing a malignancy will have a biological repository of DNA, RNA, and proteins that can potentially be deciphered as “steppingstones” leading to their illness. These molecular signatures will open the prospect of predicting cancer event pathways before clinical cancer develops, helping to correlate the epigenetic hallmarks of cancer development (nutrition, exercise, body fat content, microbiome). Results: Our team analyzed the current data collection for the 848 total participants accrued. The participants are 77.2% female and 22.8% male. Race is made up of 91.6% Caucasian, 6.3% African American, 1.3% Asian, and 0.7% Other. Ethnicity includes 2.6% Hispanic or Latino and 97.4% Non-Hispanic or Latino. A total of 11 participants have developed cancer since enrollment in the study. A total of 1600 buccal aliquots, 4,496 blood aliquots, and 888 urine aliquots are currently stored in the biorepository. Germline testing provided by a genetic counselor outside of the study identified 107 participants with pathogenic gene variants. Conclusion: The sequential annual visits will allow future molecular mapping and support strategies for early identification of malignancy and prevention of clinical disease through targeted interventions. To date, improving diversity has been challenging despite continued efforts. Citation Format: Larry Gluck, Armand DeSollar, Matthew Hudson, LeAnn Perkins, Julia Yates, Susan Webb, Gina Franco. Prevent Cancer-Greenville: identifying and influencing cancer risk. [abstract]. In: Proceedings of the AACR Special Conference: Precision Prevention, Early Detection, and Interception of Cancer; 2022 Nov 17-19; Austin, TX. Philadelphia (PA): AACR; Can Prev Res 2023;16(1 Suppl): Abstract nr P034.
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Galimov, Artur, Leah Meza, Jennifer B. Unger, Lourdes Baezconde-Garbanati, Tess Boley Cruz, and Steve Sussman. "Vape Shop Employees: Do They Act as Smoking Cessation Counselors?" Nicotine & Tobacco Research, October 22, 2020. http://dx.doi.org/10.1093/ntr/ntaa218.

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Abstract Introduction This study examined smoking cessation advice offered by vape shop employees, as well as their perceived awareness of vaping research. Aims and Methods This cross-sectional study was conducted in 121 vape shops in the Greater Los Angeles area of Southern California in four multiethnic communities (Hispanic/Latino, African American, Korean/Asian, and non-Hispanic White). A 35-minute interview assessed the employee’s tobacco product use, perceptions of vaping research, and experience advising customers to quit cigarette smoking. Results Among 121 vape shop employees surveyed, 106 (88%) reported that they provided smoking cessation advice or counseling to customers. Nearly half (45%) reported having no vaping-related research knowledge, while 30% were aware of provaping studies only. Approximately 85% of employees had quit cigarettes by switching to e-cigarettes instead, whereas 15% were dual users. Only 49% believed that vaping products contribute to nicotine addiction among youth. Those who provided advice on quitting cigarette smoking reported significantly lower knowledge of e-cigarette research than those who did not provide advice (p &lt; .01). Conclusions Most vape shop employees provide advice to customers who desire to quit cigarette smoking and initiate electronic cigarette use. However, they report a low level of awareness about e-cigarette research. Future research is warranted to examine the specifics of advice provided by vape shop employees. Training programs for vape shop employees and educational campaigns about evidence-based scientific findings on vaping may be beneficial. Implications Almost nine out of 10 surveyed vape shop employees offered cigarette smoking cessation advice to their customers, while almost half of the retailers report not being aware of any vaping-related research studies. Providing employees with training on evidence-based cessation advice could help protect customers. Also, training programs for vape shop employees and educational campaigns about the risk of nicotine addiction could potentially increase their motivation to avoid sales to minors and to warn adults about nicotine addiction.
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Nadkarni, Abhijit, Urvita Bhatia, Andre Bedendo, Tassiane Cristine Santos de Paula, Joanna Gonçalves de Andrade Tostes, Lidia Segura-Garcia, Marcela Tiburcio, and Sven Andréasson. "Brief interventions for alcohol use disorders in low- and middle-income countries: barriers and potential solutions." International Journal of Mental Health Systems 16, no. 1 (August 8, 2022). http://dx.doi.org/10.1186/s13033-022-00548-5.

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AbstractGlobal alcohol consumption and harmful use of alcohol is projected to increase in the coming decades, and most of the increase will occur in low- and middle-income countries (LMICs); which calls for cost-effective measures to reduce alcohol exposure in these countries. One such evidence based measure is screening and brief intervention (BI) for alcohol problems. Some of the characteristics of BI make them a particularly appealing choice of interventions in low-resource settings. However, despite evidence of effectiveness, implementation of BI in LMICs is rare. In this paper we discuss barriers to implementation of BI in LMICs, with examples from Latin America and India. Key barriers to implementation of BI in LMICs are the lack of financial and structural resources. Specialized services for alcohol use disorders are limited or non-existent. Hence primary care is often the only possible alternative to implement BI. However, health professionals in such settings generally lack training to deal with these disorders. In our review of BI research in these countries, we find some promising results, primarily in countries from Latin America, but so far there is limited research on effectiveness. Appropriate evaluation of efficacy and effectiveness of BI is undermined by lack of generalisability and methodological limitations. No systematic and scientific efforts to explore the implementation and evaluation of BI in primary and community platforms of care have been published in India. Innovative strategies need to be deployed to overcome supply side barriers related to specialist manpower shortages in LMICs. There is a growing evidence on the effectiveness of non-specialist health workers, including lay counsellors, in delivering frontline psychological interventions for a range of disorders including alcohol use disorders in LMICs. This paper is intended to stimulate discussion among researchers, practitioners and policy-makers in LMICs because increasing access to evidence based care for alcohol use disorders in LMICs would need a concerted effort from all these stakeholders.
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West, Erin M., Staci M. Zolkoski, Justin R. Lockhart, Jessica M. Holm, and Josh Tremont. "“Everybody Knows Everybody”: Adolescents’ Perceptions of What Helps Them Succeed in a Rural Title I School." Journal of Adolescent Research, October 1, 2021, 074355842110438. http://dx.doi.org/10.1177/07435584211043880.

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The current study explored adolescents’ perceptions of what contributes to their experiences of success in a rural Title I school through interpretative phenomenological analysis (IPA). Participants included adolescents who were enrolled at a rural Title I Middle/High School in the southern United States. The single campus school district serves approximately 185 students from Prekindergarten to grade 12. Approximately, 73% of the students are identified as At-Risk, 88% of the students are economically disadvantaged, and 100% of the students qualify for free or reduced lunch. Ten students from this school, with assent and parental consent, participated in the current study. Participants’ ages ranged from 13 to 18, and the students represented different genders (seven males, three females) and various racial and ethnic backgrounds (three Black/African American, four Latinx, two White, and one Biracial). Results from the current study suggest low-income adolescents in a rural Title I school perceived (a) school size, (b) family support, and (c) their own internal drive to succeed as contributing to their success at school. These themes, their corresponding subthemes, and representative participant statements are included. Implications for school administrators, teachers, and counselors along with directions for future research are discussed.
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Cook, Amy L., Laura A. Hayden, Rachel Tyrrell, and Arthur G. McCann. "“Doing Everything on My Own”: Examining African American, Latina/o, and Biracial Students’ Experiences With School Counselors in Promoting Academic and College Readiness." Urban Education, May 13, 2018, 004208591877262. http://dx.doi.org/10.1177/0042085918772624.

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Reuser, Arnold JJ, and Priya S. Kishnani. "Plain language summary: How the Pompe Registry is helping to identify and explain gene changes in Pompe disease." Future Rare Diseases, October 31, 2022. http://dx.doi.org/10.2217/frd-2022-0009.

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What is this summary about? This is a summary of an article originally published in the journal Human Mutation. Pompe disease is a rare genetic disorder. In the USA, one person in every 10,000 to 28,000 people is born with Pompe disease. Pompe disease develops when both parents pass on a copy of a gene, called GAA, that has a disease-causing change to it. The GAA gene contains the instructions to make an enzyme called acid alpha glucosidase; abbreviated as ‘GAA’, which breaks down glycogen into glucose. When the GAA gene contains a disease-causing change, this can lead to a total absence of GAA or the enzyme failing to function properly. As a result, glycogen builds up in cells and causes damage to organs such as the heart and muscles. There is a wide range of severity and symptoms in Pompe disease, including muscle weakness, heart and breathing issues, and extreme tiredness (fatigue). There are many changes in the GAA gene (called variants) that can result in Pompe disease. The severity of symptoms and when symptoms start partly depend on the variants that the people with Pompe disease have inherited from their parents. What was learned & how? Researchers looked at GAA gene variants from people with Pompe disease using a database called the Pompe Registry. Since 2004, the Pompe Registry has collected worldwide clinical information on people with Pompe disease and their gene changes. The researchers investigated how many different GAA variants are currently listed in this registry, and how common each variant was overall and in different geographical regions. The researchers assigned the people to three groups based on the age of when their symptoms began and if they had an enlarged heart diagnosed in their first year of life. Out of 1753 people enrolled in the Pompe Registry, the researchers analyzed data from 1079 people from 26 countries. 2075 GAA gene variants were identified, 80 of which had not been reported before. A harmful variant called c.-32-13T>G was the most common overall and was present in North America, Latin America and Europe. What are the practical implications? This analysis supports healthcare professionals and people with Pompe disease to appreciate the geographic distribution and to assess the nature of GAA variants. The findings can help with the diagnosis of Pompe disease and the understanding of how different variants relate to the start and severity of symptoms. This information will also help genetic counsellors and doctors to have discussions with people with Pompe disease and their families and caregivers about genetic risk and family planning. Clinical Trial Registration: NCT00231400 ( ClinicalTrials.gov )
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Tofts, Darren John. "Why Writers Hate the Second Law of Thermodynamics: Lists, Entropy and the Sense of Unending." M/C Journal 15, no. 5 (October 12, 2012). http://dx.doi.org/10.5204/mcj.549.

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If you cannot understand my argument, and declare “It’s Greek to me,” you are quoting Shakespeare.Bernard LevinPsoriatic arthritis, in its acute or “generalised” stage, is unbearably painful. Exacerbating the crippling of the joints, the entire surface of the skin is covered with lesions only moderately salved by anti-inflammatory ointment, the application of which is as painful as the ailment it seeks to relieve: NURSE MILLS: I’ll be as gentle as I can.Marlow’s face again fills the screen, intense concentration, comical strain, and a whispered urgency in the voice over—MARLOW: (Voice over) Think of something boring—For Christ’s sake think of something very very boring—Speech a speech by Ted Heath a sentence long sentence from Bernard Levin a quiz by Christopher Booker a—oh think think—! Really boring! A Welsh male-voice choir—Everything in Punch—Oh! Oh! — (Potter 17-18)Marlow’s collation of boring things as a frantic liturgy is an attempt to distract himself from a tumescence that is both unwanted and out of place. Although bed-ridden and in constant pain, he is still sensitive to erogenous stimulation, even when it is incidental. The act of recollection, of garnering lists of things that bore him, distracts him from his immediate situation as he struggles with the mental anguish of the prospect of a humiliating orgasm. Literary lists do many things. They provide richness of detail, assemble and corroborate the materiality of the world of which they are a part and provide insight into the psyche and motivation of the collator. The sheer desperation of Dennis Potter’s Marlow attests to the arbitrariness of the list, the simple requirement that discrete and unrelated items can be assembled in linear order, without any obligation for topical concatenation. In its interrogative form, the list can serve a more urgent and distressing purpose than distraction:GOLDBERG: What do you use for pyjamas?STANLEY: Nothing.GOLDBERG: You verminate the sheet of your birth.MCCANN: What about the Albigensenist heresy?GOLDBERG: Who watered the wicket in Melbourne?MCCANN: What about the blessed Oliver Plunkett?(Pinter 51)The interrogative non sequitur is an established feature of the art of intimidation. It is designed to exert maximum stress in the subject through the use of obscure asides and the endowing of trivial detail with profundity. Harold Pinter’s use of it in The Birthday Party reveals how central it was to his “theatre of menace.” The other tactic, which also draws on the logic of the inventory to be both sequential and discontinuous, is to break the subject’s will through a machine-like barrage of rhetorical questions that leave no time for answers.Pinter learned from Samuel Beckett the pitiless, unforgiving logic of trivial detail pushed to extremes. Think of Molloy’s dilemma of the sucking stones. In order for all sixteen stones that he carries with him to be sucked at least once to assuage his hunger, a reliable system has to be hit upon:Taking a stone from the right pocket of my greatcoat, and putting it in my mouth, I replaced it in the right pocket of my greatcoat by a stone from the right pocket of my trousers, which I replaced with a stone from the left pocket of my trousers, which I replaced by a stone from the left pocket of my greatcoat, which I replaced with the stone that was in my mouth, as soon as I had finished sucking it. Thus there were still four stones in each of my four pockets, but not quite the same stones. And when the desire to suck took hold of me again, I drew again on the right pocket of my greatcoat, certain of not taking the same stone as the last time. And while I sucked it I rearranged the other stones in the way I have just described. And so on. (Beckett, Molloy 69)And so on for six pages. Exhaustive permutation within a finite lexical set is common in Beckett. In the novel Watt the eponymous central character is charged with serving his unseen master’s dinner as well as tidying up afterwards. A simple and bucolic enough task it would seem. But Beckett’s characters are not satisfied with conjecture, the simple assumption that someone must be responsible for Mr. Knott’s dining arrangements. Like Molloy’s solution to the sucking stone problem, all possible scenarios must be considered to explain the conundrum of how and why Watt never saw Knott at mealtime. Twelve possibilities are offered, among them that1. Mr. Knott was responsible for the arrangement, and knew that he was responsible for the arrangement, and knew that such an arrangement existed, and was content.2. Mr. Knott was not responsible for the arrangement, but knew who was responsible for the arrangement, and knew that such an arrangement existed, and was content.(Beckett, Watt 86)This stringent adherence to detail, absurd and exasperating as it is, is the work of fiction, the persistence of a viable, believable thing called Watt who exists as long as his thought is made manifest on a page. All writers face this pernicious prospect of having to confront and satisfy “fiction’s gargantuan appetite for fact, for detail, for documentation” (Kenner 70). A writer’s writer (Philip Marlow) Dennis Potter’s singing detective struggles with the acute consciousness that words eventually will fail him. His struggle to overcome verbal entropy is a spectre that haunts the entire literary imagination, for when the words stop the world stops.Beckett made this struggle the very stuff of his work, declaring famously that all he wanted to do as a writer was to leave “a stain upon the silence” (quoted in Bair 681). His characters deteriorate from recognisable people (Hamm in Endgame, Winnie in Happy Days) to mere ciphers of speech acts (the bodiless head Listener in That Time, Mouth in Not I). During this process they provide us with the vocabulary of entropy, a horror most eloquently expressed at the end of The Unnamable: I can’t go on, you must go on, I’ll go on, you must say words, as long as there are any, until they find me, until they say me, strange pain, strange sin, you must go on, perhaps it’s done already, perhaps they have said me already, perhaps they have carried me to the threshold of my story, before the door that opens on my story, that would surprise me, if it opens, it will be I, it will be the silence, where I am, I don’t know, I’ll never know, in the silence you don’t know, you must go on, I can’t go on, I’ll go on. (Beckett, Molloy 418)The importance Beckett accorded to pauses in his writing, from breaks in dialogue to punctuation, stresses the pacing of utterance that is in sync with the rhythm of human breath. This is acutely underlined in Jack MacGowran’s extraordinary gramophone recording of the above passage from The Unnamable. There is exhaustion in his voice, but it is inflected by an urgent push for the next words to forestall the last gasp. And what might appear to be parsimony is in fact the very commerce of writing itself. It is an economy of necessity, when any words will suffice to sustain presence in the face of imminent silence.Hugh Kenner has written eloquently on the relationship between writing and entropy, drawing on field and number theory to demonstrate how the business of fiction is forever in the process of generating variation within a finite set. The “stoic comedian,” as he figures the writer facing the blank page, self-consciously practices their art in the full cognisance that they select “elements from a closed set, and then (arrange) them inside a closed field” (Kenner 94). The nouveau roman (a genre conceived and practiced in Beckett’s lean shadow) is remembered in literary history as a rather austere, po-faced formalism that foregrounded things at the expense of human psychology or social interaction. But it is emblematic of Kenner’s portrait of stoicism as an attitude to writing that confronts the nature of fiction itself, on its own terms, as a practice “which is endlessly arranging things” (13):The bulge of the bank also begins to take effect starting from the fifth row: this row, as a matter of fact, also possesses only twenty-one trees, whereas it should have twenty-two for a true trapezoid and twenty-three for a rectangle (uneven row). (Robbe-Grillet 21)As a matter of fact. The nouveau roman made a fine if myopic art of isolating detail for detail’s sake. However, it shares with both Beckett’s minimalism and Joyce’s maximalism the obligation of fiction to fill its world with stuff (“maximalism” is a term coined by Michel Delville and Andrew Norris in relation to the musical scores of Frank Zappa that opposes the minimalism of John Cage’s work). Kenner asks, in The Stoic Comedians, where do the “thousands on thousands of things come from, that clutter Ulysses?” His answer is simple, from “a convention” and this prosaic response takes us to the heart of the matter with respect to the impact on writing of Isaac Newton’s unforgiving Second Law of Thermodynamics. In the law’s strictest physical sense of the dissipation of heat, of the loss of energy within any closed system that moves, the stipulation of the Second Law predicts that words will, of necessity, stop in any form governed by convention (be it of horror, comedy, tragedy, the Bildungsroman, etc.). Building upon and at the same time refining the early work on motion and mass theorised by Aristotle, Kepler, and Galileo, inter alia, Newton refined both the laws and language of classical mechanics. It was from Wiener’s literary reading of Newton that Kenner segued from the loss of energy within any closed system (entropy) to the running silent out of words within fiction.In the wake of Norbert Wiener’s cybernetic turn in thinking in the 1940s, which was highly influenced by Newton’s Second Law, fiction would never again be considered in the same way (metafiction was a term coined in part to recognise this shift; the nouveau roman another). Far from delivering a reassured and reassuring present-ness, an integrated and ongoing cosmos, fiction is an isometric exercise in the struggle against entropy, of a world in imminent danger of running out of energy, of not-being:“His hand took his hat from the peg over his initialled heavy overcoat…” Four nouns, and the book’s world is heavier by four things. One, the hat, “Plasto’s high grade,” will remain in play to the end. The hand we shall continue to take for granted: it is Bloom’s; it goes with his body, which we are not to stop imagining. The peg and the overcoat will fade. “On the doorstep he felt in his hip pocket for the latchkey. Not there. In the trousers I left off.” Four more things. (Kenner 87)This passage from The Stoic Comedians is a tour de force of the conjuror’s art, slowing down the subliminal process of the illusion for us to see the fragility of fiction’s precarious grip on the verge of silence, heroically “filling four hundred empty pages with combinations of twenty-six different letters” (xiii). Kenner situates Joyce in a comic tradition, preceded by Gustave Flaubert and followed by Beckett, of exhaustive fictive possibility. The stoic, he tells us, “is one who considers, with neither panic nor indifference, that the field of possibilities available to him is large perhaps, or small perhaps, but closed” (he is prompt in reminding us that among novelists, gamblers and ethical theorists, the stoic is also a proponent of the Second Law of Thermodynamics) (xiii). If Joyce is the comedian of the inventory, then it is Flaubert, comedian of the Enlightenment, who is his immediate ancestor. Bouvard and Pécuchet (1881) is an unfinished novel written in the shadow of the Encyclopaedia, an apparatus of the literate mind that sought complete knowledge. But like the Encyclopaedia particularly and the Enlightenment more generally, it is fragmentation that determines its approach to and categorisation of detail as information about the world. Bouvard and Pécuchet ends, appropriately, in a frayed list of details, pronouncements and ephemera.In the face of an unassailable impasse, all that is left Flaubert is the list. For more than thirty years he constructed the Dictionary of Received Ideas in the shadow of the truncated Bouvard and Pécuchet. And in doing so he created for the nineteenth century mind “a handbook for novelists” (Kenner 19), a breakdown of all we know “into little pieces so arranged that they can be found one at a time” (3): ACADEMY, FRENCH: Run it down but try to belong to it if you can.GREEK: Whatever one cannot understand is Greek.KORAN: Book about Mohammed, which is all about women.MACHIAVELLIAN: Word only to be spoken with a shudder.PHILOSOPHY: Always snigger at it.WAGNER: Snigger when you hear his name and joke about the music of the future. (Flaubert, Dictionary 293-330)This is a sample of the exhaustion that issues from the tireless pursuit of categorisation, classification, and the mania for ordered information. The Dictionary manifests the Enlightenment’s insatiable hunger for received ideas, an unwieldy background noise of popular opinion, general knowledge, expertise, and hearsay. In both Bouvard and Pécuchet and the Dictionary, exhaustion was the foundation of a comic art as it was for both Joyce and Beckett after him, for the simple reason that it includes everything and neglects nothing. It is comedy born of overwhelming competence, a sublime impertinence, though not of manners or social etiquette, but rather, with a nod to Oscar Wilde, the impertinence of being definitive (a droll epithet that, not surprisingly, was the title of Kenner’s 1982 Times Literary Supplement review of Richard Ellmann’s revised and augmented biography of Joyce).The inventory, then, is the underlining physio-semiotics of fictional mechanics, an elegiac resistance to the thread of fiction fraying into nothingness. The motif of thermodynamics is no mere literary conceit here. Consider the opening sentence in Borges:Of the many problems which exercised the reckless discernment of Lönnrot, none was so strange—so rigorously strange, shall we say—as the periodic series of bloody events which culminated at the villa of Triste-le-Roy, amid the ceaseless aroma of the eucalypti. (Borges 76)The subordinate clause, as a means of adjectival and adverbial augmentation, implies a potentially infinite sentence through the sheer force of grammatical convention, a machine-like resistance to running out of puff:Under the notable influence of Chesterton (contriver and embellisher of elegant mysteries) and the palace counsellor Leibniz (inventor of the pre-established harmony), in my idle afternoons I have imagined this story plot which I shall perhaps write someday and which already justifies me somehow. (72)In “Pierre Menard, Author of the Quixote,” a single adjective charmed with emphasis will do to imply an unseen network:The visible work left by this novelist is easily and briefly enumerated. (Borges 36)The annotation of this network is the inexorable issue of the inflection: “I have said that Menard’s work can be easily enumerated. Having examined with care his personal files, I find that they contain the following items.” (37) This is a sample selection from nineteen entries:a) A Symbolist sonnet which appeared twice (with variants) in the review La conque (issues of March and October 1899).o) A transposition into alexandrines of Paul Valéry’s Le cimitière marin (N.R.F., January 1928).p) An invective against Paul Valéry, in the Papers for the Suppression of Reality of Jacques Reboul. (37-38)Lists, when we encounter them in Jorge Luis Borges, are always contextual, supplying necessary detail to expand upon character and situation. And they are always intertextual, anchoring this specific fictional world to others (imaginary, real, fabulatory or yet to come). The collation and annotation of the literary works of an imagined author (Pierre Menard) of an invented author (Edmond Teste) of an actual author (Paul Valéry) creates a recursive, yet generative, feedback loop of reference and literary progeny. As long as one of these authors continues to write, or write of the work of at least one of the others, a persistent fictional present tense is ensured.Consider Hillel Schwartz’s use of the list in his Making Noise (2011). It not only lists what can and is inevitably heard, in this instance the European 1700s, but what it, or local aural colour, is heard over:Earthy: criers of artichokes, asparagus, baskets, beans, beer, bells, biscuits, brooms, buttermilk, candles, six-pence-a-pound fair cherries, chickens, clothesline, cockles, combs, coal, crabs, cucumbers, death lists, door mats, eels, fresh eggs, firewood, flowers, garlic, hake, herring, ink, ivy, jokebooks, lace, lanterns, lemons, lettuce, mackeral, matches […]. (Schwartz 143)The extended list and the catalogue, when encountered as formalist set pieces in fiction or, as in Schwartz’s case, non-fiction, are the expansive equivalent of le mot juste, the self-conscious, painstaking selection of the right word, the specific detail. Of Ulysses, Kenner observes that it was perfectly natural that it “should have attracted the attention of a group of scholars who wanted practice in compiling a word-index to some extensive piece of prose (Miles Hanley, Word Index to Ulysses, 1937). More than any other work of fiction, it suggests by its texture, often by the very look of its pages, that it has been painstakingly assembled out of single words…” (31-32). In a book already crammed with detail, with persistent reference to itself, to other texts, other media, such formalist set pieces as the following from the oneiric “Circe” episode self-consciously perform for our scrutiny fiction’s insatiable hunger for more words, for invention, the Latin root of which also gives us the word inventory:The van of the procession appears headed by John Howard Parnell, city marshal, in a chessboard tabard, the Athlone Poursuivant and Ulster King of Arms. They are followed by the Right Honourable Joseph Hutchinson, lord mayor Dublin, the lord mayor of Cork, their worships the mayors of Limerick, Galway, Sligo and Waterford, twentyeight Irish representative peers, sirdars, grandees and maharajahs bearing the cloth of estate, the Dublin Metropolitan Fire Brigade, the chapter of the saints of finance in their plutocratic order of precedence, the bishop of Down and Connor, His Eminence Michael cardinal Logue archbishop of Armagh, primate of all Ireland, His Grace, the most reverend Dr William Alexander, archbishop of Armagh, primate of all Ireland, the chief rabbi, the Presbyterian moderator, the heads of the Baptist, Anabaptist, Methodist and Moravian chapels and the honorary secretary of the society of friends. (Joyce, Ulysses 602-604)Such examples demonstrate how Joycean inventories break from narrative as architectonic, stand-alone assemblages of information. They are Rabelaisian irruptions, like Philip Marlow’s lesions, that erupt in swollen bas-relief. The exaggerated, at times hysterical, quality of such lists, perform the hallucinatory work of displacement and condensation (the Homeric parallel here is the transformation of Odysseus’s men into swine by the witch Circe). Freudian, not to mention Stindberg-ian dream-work brings together and juxtaposes images and details that only make sense as non-sense (realistic but not real), such as the extraordinary explosive gathering of civic, commercial, political, chivalric representatives of Dublin in this foreshortened excerpt of Bloom’s regal campaign for his “new Bloomusalem” (606).The text’s formidable echolalia, whereby motifs recur and recapitulate into leitmotifs, ensures that the act of reading Ulysses is always cross-referential, suggesting the persistence of a conjured world that is always already still coming into being through reading. And it is of course this forestalling of Newton’s Second Law that Joyce brazenly conducts, in both the textual and physical sense, in Finnegans Wake. The Wake is an impossible book in that it infinitely sustains the circulation of words within a closed system, creating a weird feedback loop of cyclical return. It is a text that can run indefinitely through the force of its own momentum without coming to a conclusion. In a text in which the author’s alter ego is described in terms of the technology of inscription (Shem the Penman) and his craft as being a “punsil shapner,” (Joyce, Finnegans 98) Norbert Wiener’s descriptive example of feedback as the forestalling of entropy in the conscious act of picking up a pencil is apt: One we have determined this, our motion proceeds in such a way that we may say roughly that the amount by which the pencil is not yet picked up is decreased at each stage. (Wiener 7) The Wake overcomes the book’s, and indeed writing’s, struggle with entropy through the constant return of energy into its closed system as a cycle of endless return. Its generative algorithm can be represented thus: “… a long the riverrun …” (628-3). The Wake’s sense of unending confounds and contradicts, in advance, Frank Kermode’s averring to Newton’s Second Law in his insistence that the progression of all narrative fiction is defined in terms of the “sense of an ending,” the expectation of a conclusion, whereby the termination of words makes “possible a satisfying consonance with the origins and with the middle” (Kermode 17). It is the realisation of the novel imagined by Silas Flannery, the fictitious author in Italo Calvino’s If on a winter’s night a traveller, an incipit that “maintains for its whole duration the potentiality of the beginning” (Calvino 140). Finnegans Wake is unique in terms of the history of the novel (if that is indeed what it is) in that it is never read, but (as Joseph Frank observed of Joyce generally) “can only be re-read” (Frank 19). With Wiener’s allegory of feedback no doubt in mind, Jacques Derrida’s cybernetic account of the act of reading Joyce comes, like a form of echolalia, on the heels of Calvino’s incipit, his perpetual sustaining of the beginning: you stay on the edge of reading Joyce—for me this has been going on for twenty-five or thirty years—and the endless plunge throws you back onto the river-bank, on the brink of another possible immersion, ad infinitum … In any case, I have the feeling that I haven’t yet begun to read Joyce, and this “not having begun to read” is sometimes the most singular and active relationship I have with his work. (Derrida 148) Derrida wonders if this process of ongoing immersion in the text is typical of all works of literature and not just the Wake. The question is rhetorical and resonates into silence. And it is silence, ultimately, that hovers as a mute herald of the end when words will simply run out.Post(script)It is in the nature of all writing that it is read in the absence of its author. Perhaps the most typical form of writing, then, is the suicide note. In an extraordinary essay, “Goodbye, Cruel Words,” Mark Dery wonders why it has been “so neglected as a literary genre” and promptly sets about reviewing its decisive characteristics. Curiously, the list features amongst its many forms: I’m done with lifeI’m no goodI’m dead. (Dery 262)And references to lists of types of suicide notes are among Dery’s own notes to the essay. With its implicit generic capacity to intransitively add more detail, the list becomes in the light of the terminal letter a condition of writing itself. The irony of this is not lost on Dery as he ponders the impotent stoicism of the scribbler setting about the mordant task of writing for the last time. Writing at the last gasp, as Dery portrays it, is a form of dogged, radical will. But his concluding remarks are reflective of his melancholy attitude to this most desperate act of writing at degree zero: “The awful truth (unthinkable to a writer) is that eloquent suicide notes are rarer than rare because suicide is the moment when language fails—fails to hoist us out of the pit, fails even to express the unbearable weight” (264) of someone on the precipice of the very last word they will ever think, let alone write. Ihab Hassan (1967) and George Steiner (1967), it would seem, were latecomers as proselytisers of the language of silence. But there is a queer, uncanny optimism at work at the terminal moment of writing when, contra Dery, words prevail on the verge of “endless, silent night.” (264) Perhaps when Newton’s Second Law no longer has carriage over mortal life, words take on a weird half-life of their own. Writing, after Socrates, does indeed circulate indiscriminately among its readers. There is a dark irony associated with last words. When life ceases, words continue to have the final say as long as they are read, and in so doing they sustain an unlikely, and in their own way, stoical sense of unending.ReferencesBair, Deirdre. Samuel Beckett: A Biography. London: Jonathan Cape, 1978.Beckett, Samuel. Molloy Malone Dies. The Unnamable. London: John Calder, 1973.---. Watt. London: John Calder, 1976.Borges, Jorge Luis. Labyrinths. Selected Stories & Other Writings. Ed. Donald A. Yates & James E. Irby. New York: New Directions, 1964.Calvino, Italo. If On A Winter’s Night A Traveller. Trans. William Weaver, London: Picador, 1981.Delville, Michael, and Andrew Norris. “Frank Zappa, Captain Beefheart, and the Secret History of Maximalism.” Ed. Louis Armand. Contemporary Poetics: Redefining the Boundaries of Contemporary Poetics, in Theory & Practice, for the Twenty-First Century. Evanston: Northwestern UP, 2007. 126-49.Derrida, Jacques. “Two Words for Joyce.” Post-Structuralist Joyce. Essays from the French. Ed. Derek Attridge and Daniel Ferrer. Cambridge: Cambridge UP, 1984. 145-59.Dery, Mark. I Must Not think Bad Thoughts: Drive-by Essays on American Dread, American Dreams. Minneapolis: U of Minnesota P, 2012.Frank, Joseph, “Spatial Form in Modern Literature.” Sewanee Review, 53, 1945: 221-40, 433-56, 643-53.Flaubert, Gustave. Bouvard and Pécuchet. Trans. A. J. KrailSheimer. Harmondsworth: Penguin, 1976.Flaubert, Gustave. Dictionary of Received Ideas. Trans. A. J. KrailSheimer. Harmondsworth: Penguin, 1976.Hassan, Ihab. The Literature of Silence: Henry Miller and Samuel Beckett. New York: Knopf, 1967.Joyce, James. Finnegans Wake. London: Faber and Faber, 1975.---. Ulysses. Harmondsworth: Penguin, 1992.Kenner, Hugh. The Stoic Comedians. Berkeley: U of California P, 1974.Kermode, Frank. The Sense of an Ending: Studies in the Theory of Narrative Fiction. New York: Oxford U P, 1966.‪Levin, Bernard. Enthusiasms. London: Jonathan Cape, 1983.MacGowran, Jack. MacGowran Speaking Beckett. Claddagh Records, 1966.Pinter, Harold. The Birthday Party. London: Methuen, 1968.Potter, Dennis. The Singing Detective. London, Faber and Faber, 1987.Robbe-Grillet, Alain. Jealousy. Trans. Richard Howard. London: John Calder, 1965.Schwartz, Hillel. Making Noise. From Babel to the Big Bang and Beyond. New York: Zone Books, 2011.Steiner, George. Language and Silence: New York: Atheneum, 1967.Wiener, Norbert. Cybernetics, Or Control and Communication in the Animal and the Machine. Cambridge, Mass.: MIT Press, 1965.
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