Journal articles on the topic 'Wa 31 m48945 2006'

This paper examined the aesthetics and politics of writing African literature in local vernaculars as opposed to writing in what proponents of this discourse have termed as colonial languages, like English and French, amongst others. The focus of this article is on the writings of Ngũgĩ wa Thiong’o, the most vocal critic of ‘imperial languages’, and also an ardent advocate for African languages as well as a practitioner of his vernacular language, where most of his published fictional works are in his native Gĩkũyũ language of Kenya. This paper then critically examines Ngũgĩ wa Thiong’o’s application of the Gĩkũyũ language in his novel Mũrogi wa Kagogo (2006), translated as Wizard of the Crow, and his other works in the language. This paper inevitably engages with the writer’s stance on the use of vernaculars in increasingly globalizing cultures. Article received: December 18, 2019; Article accepted: January 31, 2020; Published online: April 15, 2020; Original scholarly article

The effects of cumulative solar irradiance and rainfall on incidence of potato late blight (caused by Phytophthora infestans) in the Columbia Basin of south-central Washington and north-central Oregon were investigated using meteorological data collected near Othello, WA from 1990 through 2007 and Prosser, WA from 1990 through 2006. An association between solar irradiance and seasonal differences in late blight epidemics has not been quantitatively determined. Incidence of late blight in the Columbia Basin significantly increased as cumulative solar irradiance decreased during 1 April to 31 July and 1 June to 31 July at both Othello and Prosser. Incidence of late blight also increased as number of rainy days increased during 1 April to 31 July at Othello and Prosser and from 1 June to 31 July at Prosser. Coefficients of determination for significant models on late bight incidence ranged from 0.28 to 0.43 for cumulative solar irradiance and 0.27 to 0.38 for number of rainy days. Late blight incidence significantly increased as day of the year for first occurrence of late blight decreased in the Columbia Basin. A multiple regression model that included cumulative solar irradiance from 1 June to 31 July at Prosser and day of year for first occurrence of late blight as independent variables accounted for 58% of the variation for late blight incidence (adjusted R2 = 0.58), and a model that included number of cloudy days without rain combined with number of rainy days accounted for 62% of the variation for late blight incidence. This is the first report demonstrating a quantitative association of solar irradiance and incidence of late blight in commercial potato fields.

Background: Sarcopenia, the loss of muscle mass, has been recognized as a prognostic factor for cancer patients. For example, low body mass index (BMI) was reported to be a risk of poor overall survival (OS) among allogeneic hematopoietic stem cell transplantation (allo-HSCT) recipients. However, low BMI was not associated with high non-relapse mortality (NRM) rate, and BMI may not directly reflect the physical condition. (Bone Marrow Transplant. 2014;49:1505-12). To evaluate the clinical impact of the muscle volume on the prognosis of allo-HSCT recipients, other biomarkers that directly reflect muscle mass may be warranted. Urinary creatinine excretion (UCE) has been reported to estimate muscle mass and have prognostic value for kidney transplant patients (Transplantation. 2008;86:391-8.). There is no report to evaluate clinical impact of UCE on the prognosis of allo-HSCT recipients. Therefore, we retrospectively analyzed the association between pre-transplant UCE and the transplant outcomes. Methods: We included 173 adult patients with acute myeloid leukemia (AML) in complete remission (CR) who underwent first allo-HSCT from 2006 to 2017 at our institute and measured UCE before allo-HSCT. Concerned the possibility of urine storage failure, two patients with low total daily urine volume (<0.5L/day) were excluded from this analysis. Therefore, we investigated the remaining 171 patients. In order to correct the physical disparities of individual patients, we evaluated the clinical impact of weight adjusted UCE (WA-UCE) ,i.e UCE / body weight [μmol/kg/day] (Intensive Care Med. 2018;44:1699-708.). We used receiver operating characteristics curve in order to determine the cutoff value of the WA-UCE and classified the patients into the high and low WA-UCE group. We evaluated transplant outcomes such as OS, progression-free survival (PFS), NRM, and cumulative incidence of relapse (CIR) between two groups. Results: The median age at allo-HSCT was 52 (range, 18-73) and there were more male patients (n=111) than female patients (n=60). Regarding cytogenetic risk, 15 (9.1%), 112 (65.8%), and 38 (23.0%) were categorized as favorable, intermediate, and poor risk, respectively (There were five patients without cytogenetic data). The median follow-up period of survivors was 704 (range, 9 to 3,857) days. We defined the cutoff value of the weight adjusted UCE as 148 μmol/kg/day in male and 128 μmol/kg/day in female. Among 171 patients, 90 patients (male = 59, female = 31) were in the high WA-UCE group and 81 patients (male = 52, female = 29) were in the low WA-UCE group. We found no significant differences between two groups in terms of the number of relapse before allo-HSCT, cytogenetic risks, conditioning regimens, hematopoietic cell transplantation comorbidity index, donor-recipient HLA matching, donor source, or estimated glomerular filtration rate. On the other hand, patient's age at allo-HSCT was significantly younger (low vs. high WA-UCE group: median, 53 [range, 18 - 73] vs. 48 [range, 19 - 68] years, P = 0.02) and BMI was lower (low vs. high WA-UCE group: median, 22.3 [range, 15.4 - 38.8] vs. 21.9 [range, 15.4 - 29.3] kg/m2, P = 0.003) in high WA-UCE group. In univariate analysis, we observed a significant difference in OS, PFS, and NRM between two groups (low vs. high WA-UCE group: 1-year OS, 60.1% vs. 80.9%, P < 0.01; 1-year PFS, 54.1% vs. 70.9%, P = 0.02; 1-year NRM, 24.8% vs. 12.3%, P = 0.02) (Figure1). On the other hand, there was no significant difference in 1-year CIR between two groups (low vs. high WA-UCE group: 21.1% vs. 16.8%, P = 0.63). In our cohort, the low BMI (< 18.5 kg/m2) was not significantly associated with OS, PFS, CIR, and NRM (low vs. high BMI group: 1-year OS, 77.6% vs. 69.9%, P = 0.51; 1-year PFS, 74.1% vs. 60.9%, P = 0.45; 1-year CIR, 14.8% vs. 19.5%, P = 0.02, 1-year NRM, 11.1% vs. 19.5%, P = 0.70) In multivariate analysis, the low WA-UCE was an independent risk factor for OS (Hazard ratio (HR) [95% confidence interval (CI)]; 2.29 [1.38 - 3.80], P < 0.01), PFS (HR [95% CI]; 1.76 [1.11 - 2.79], P = 0.02), and NRM (HR [95% CI]; 2.22 [1.13 - 4.36], P = 0.02) (table1). Conclusion: In allo-HSCT adult recipients with AML in CR, low WA-UCE before transplantation was associated with poor prognosis, which related to high NRM within 1 year. WA-UCE can be an independent, objective, simple, and reliable biomarker for evaluating muscle mass and predicting transplant outcome. Disclosures No relevant conflicts of interest to declare.

Abstract Background: Acute lymphoblastic leukemia (ALL) is the most common form of malignancy in children. Advances in treatments have made ALL the disease highly curable; however for those patients who relapse, hematopoeitic stem cell transplantation (HSCT) offers a reasonable chance of cure. Minimal residual disease (MRD) detection by Multiparametric Flow Cytometery (MPF) is being used for risk adapted treatment decisions in many ALL trials. We present a series of 31 pediatric ALL patients who had morphologic and MPF evaluation of disease burden prior to ablative HSCT. Methods: Thirty one patients were treated at Children’s Hospital and Regional Medical Center, Seattle, WA for relapsed or very high risk ALL, were in complete morphologic remission, and received an ablative HSCT from May 2006-May 2008. Twelve patients were in second or third complete remission (CR) and 19 were in first CR. Eleven patients received a matched related donor, 20 patients received a unrelated donor graft. All patients underwent marrow evaluation including morphology and MPF within four weeks of their transplant date. The MPF was done by 7 or 9 color flow cytometry using the following reagents for B lineage: CD10, CD19, CD20, CD34, CD38, CD58 and CD45 and for T lineage: CD2, CD3, CD4, CD5, CD7, CD8, CD34, CD56, and CD45. Transplant regimens were total body irradiation-based (1320 cGy) with either cyclophosphamide (n=24) or fludarabine (n=6). MRD+ was any detectable leukemia >0.01% of cells. All patients were in morphologic remission (< 5% blasts) at time of transplant. Events were defined as relapse or deaths. Results: 21 patients were MRD-, 10 were MRD+. The 2 year event free survival (EFS) for the entire group was 56% (+/−22%). The EFS at 20 months for those patients in CR1 and CR2/3 were 62% (+/−32%) and 40% (+/−32%), respectively. EFS, relapse risk and non relapse mortality was analyzed with respect to MRD status: MRD+ (n=10) MRD- (n=21) p value EFS 36% (+/−32%) 68% (+/−26%) 0.037 Relapse Risk 48% (+/−36%) 13% (+/−16%) 0.036 Non-relapse Mortality 30% (+/−36%) 23% (+/−26%) 0.45 Discussion: We present a single institution series of patients treated for high risk or relapsed ALL who underwent disease evaluation prior to HSCT with MPF. With the small number of patients evaluated, it appears that any amount of disease detected by MPF was an adverse risk factor for recurrence. Those patients who were MRD+ experienced a higher risk of death from relapse, however, experienced no difference in non-relapse mortality. Resistant disease as detected by MRD analysis at time of transplant is a marker for poor outcome.

Abstract Abstract 678 Background: Umbilical cord blood transplant (UCBT) recipients are high risk for cytomegalovirus (CMV) complications due to delayed and insufficient immune reconstitution. Since CMV viral load has been shown to be associated with the development of disease, an intensified prevention strategy was adopted at the FHCRC (Seattle, WA) which consists of pre-transplant ganciclovir (from day -8 to day -2), and high-dose acyclovir ([HDA] 2 gm valacyclovir 3 times daily) with preemptive bi-weekly monitoring for CMV DNA in serum from day 0 until day +100. Methods: We set out to compare rates of CMV reactivation and disease through day +100 in high-risk CMV seropositive UCBT recipients who received either the intensified strategy (G+HDA) or standard dose of acyclovir/valacyclovir (SDA, acyclovir 800 mg or valacyclovir 500 mg twice daily). All patients underwent weekly plasma testing for CMV by polymerase chain reaction (PCR). Our primary outcomes of interest were any CMV reactivation or disease by day 100. Risk factors for CMV reactivation were assessed using a multivariate Cox proportional hazards model. Results: Of the 105 UCBT recipients transplanted at the FHCRC between 1/2006 and 12/2009, 61 (58%) were CMV seropositive and eligible for inclusion in the cohort. In total, 31/61 (51%) received SDA and 30 (49%) G+HDA. The median patient age was lower in the SDA group 21.3 (interquartile range [IQR] 14.8–46.7) years and 30.1 (IQR 10.1–41.8) for G+HDA group, but other demographic factors were similar. Overall, the cumulative incidence of CMV reactivation was significantly lower in the G+HDA group (60% vs. 96.7; p=0.001 [Gray's test]) (Figure 1). In patients receiving G+HDA, the median time to first positive CMV PCR occurred later (27 days [IQR 11–35]) when compared to those given SDA prophylaxis (17 days [IQR 8–25]) (p=0.26). Additionally, the G+HDA group had significantly lower initial (71 copies/mL [IQR 47–110] vs. 235 [IQR 63–760], p=0.006) and maximum PCR viral loads (VL) (170 copies/ml [IQR 88–310] vs. 3200 [1400-11000], p<0.001) when compared to those receiving SDA prophylaxis. In multivariate analyses, the G+HDA prophylactic strategy was also associated with a significant reduction in CMV reactivation (HR 0.31; 95% CI 0.16–0.58; p<0.001). Over the first 100 days following transplant, there were fewer episodes of invasive CMV disease in the G+HDA group (1/30, 3% [1 pneumonia]) than under SDA prophylaxis (5/31, 16% [1 disseminated, 2 pneumonia, and 2 GI]) (p=0.09). In the SDA group 2/5 (40%) patients died secondary to CMV disease, and an additional 2 patients developed fatal CMV pneumonia after day 100 (day 165 & 191); no CMV related death or cases of late disease developed in the group receiving G+HDA prophylaxis. There was no evidence of increased toxicity by either median and maximum creatinine levels or days to engraftment when comparing the two regimens. Conclusions: Our study demonstrates that G+HDA was effective in preventing CMV complications in UCBT recipients. This intensified prevention strategy was associated with a decreased rate of CMV reactivation and appeared to significantly alter CMV replication dynamics. Importantly, the increased valacyclovir exposure did not alter the risk for developing either renal or hematologic toxicity. Disclosures: No relevant conflicts of interest to declare.

European ash (Fraxinus excelsior), also known as common ash, occurs naturally inland in lower areas of southeastern Norway and along the southern coast of the country. It is important both as a forest and ornamental tree. During the last decade, dieback has become a disastrous disease on F. excelsior in many European countries. The anamorphic fungus Chalara fraxinea T. Kowalski (1), described for the first time from dying ash trees in Poland, is now considered the cause of ash dieback (2). In May of 2008, C. fraxinea was isolated from 1.5 m high diseased F. excelsior in a nursery in Østfold County in southeastern Norway. Symptoms included wilting, necrotic lesions around leaf scars and side branches, and discoloration of the wood. From symptomatic branches, small pieces (approximately 1 cm3) were excised in the transition area between healthy and discolored wood. After surface sterilization (10 s in 70% ethanol + 90 s in NaOCl), the pieces were air dried for 1 min in a safety cabinet, cut into smaller pieces, and placed on media. The fungus was isolated on potato dextrose agar (PDA) and water agar (WA). On PDA, the cultures were tomentose, light orange, and grew slowly (21 mm mean colony diameter after 2 weeks at room temperature). Typical morphological features of C. fraxinea developed in culture. Brownish phialides (14.8 to 30.0 [19.5] × 2.5 to 5.0 [4.1] μm, n = 50) first appeared in the center of the colonies on the agar plugs that had been transferred. The agar plugs were 21 days old when phialides were observed. Abundant sporulation occurred 3 days later. Conidia (phialospores) extruded apically from the phialides and formed droplets. Conidia measured 2.1 to 4.0 (3.0) × 1.4 to 1.9 (1.7) μm (n = 50). The first-formed conidia from each phialide were different in size and shape from the rest by being longer (6 μm, n = 10) and more narrow in the end that first appeared at the opening of the phialide. Internal transcribed spacer sequencing confirmed that the morphological identification was correct (Accession No. EU848544 in GenBank). A pathogenicity test was carried out in June of 2008 by carefully removing one leaf per plant on 10 to 25 cm high F. excelsior trees (18 trees) and placing agar plugs from a 31-day-old C. fraxinea culture (isolate number 10636) on the leaf scars and covering with Parafilm. After 46 days, isolations were carried out as described above from discolored wood that had developed underneath necrotic lesions in the bark and subsequently caused wilting of leaves. All the inoculated plants showed symptoms, and C. fraxinea was successfully reisolated. No symptoms were seen on uninoculated control plants (eight trees) that had received the same treatment except that sterile PDA agar plugs had been used. References: (1) T. Kowalski. For. Pathol. 36:264, 2006. (2) T. Kowalski and O. Holdenrieder, For. Pathol. Online publication, doi: 10.1111/j.1439-0329.2008.00565.x, 2008.

Con el propósito de estudiar la organización de datos e identificar la diversidad de representaciones construidas en situación de exploración de datos auténticos, en un grupo de 56 estudiantes chilenos de tercer grado de primaria, se diseñó e implementó un plan de clases de estadística, en el que se solicitó a los estudiantes ordenar y organizar los datos para responder a un problema. Este artículo se centra en el estudio cualitativo de las representaciones de datos producidas por los estudiantes durante la implementación del plan de clases. La exploración de los datos realizada por los estudiantes sobre los alimentos que consumían en la escuela (“colaciones”), los llevó a elaborar representaciones de datos (listas, estado intermedio de esquema tabular y tabla de frecuencias). Se concluye que el contexto auténtico y la construcción de representaciones propias promovieron que los estudiantes construyeran preponderantemente listas (77%), aplicando con sentido la partición, la clase y el cardinal. Se sugiere incorporar explícitamente en la enseñanza el formato lista, como herramienta representacional y unidad básica de la tabla. Referencias Brizuela, B., y Alvarado, M. (2010). First graders' work on additive problems with the use of different notational tools. Revista IRICE, 21, 37-43. Recuperado a partir desde https://ojs.rosario-conicet.gov.ar/index.php/revistairice/article/view/v21n21a04 Brizuela, B., y Lara-Roth, S. (2002). Additive relations and function tables. Journal of Mathematical Behavior, 20(3), 309-319. https://doi.org/10.1016/S0732-3123(02)00076-7 Coutanson, B. (2010). La question de l’éducation statistique et de la formation de l’esprit statistique à l’école primaire en France. Étude exploratoire de quelques caractéristiques de situations inductrices d’un enseignement de la statistique au cycle III (Tesis doctoral). Université de Lyon, Francia. Recuperado desde https://tel.archives-ouvertes.fr/tel-00494338/ Dibble, E. (1997). The Interpretation of Tables and Graphs. Seattle, WA: University of Washington. Duval, R. (2003). Comment Analyser le Fonctionnement Representationnel des Tableaux et leur Diversite? Spirale -Revue de Recherches en Éducation-, 32, 7-31. Recuperado desde http://spirale-edu-revue.fr/IMG/pdf/1_Duval_Spi32F.pdf Estrella, S. (2014). El formato tabular: una revisión de literatura. Revista Actualidades Investigativas en Educación, 14(2), 1-23. Estrella, S., e Isoda, M. (2020). Suma Primero: manual del docente, 1° básico. Valparaíso: Ediciones Universitarias de Valparaíso. Estrella, S., Mena-Lorca, A., y Olfos, R. (2017). Naturaleza del objeto matemático “Tabla”. Magis: Revista Internacional de Investigación en Educación, 10(20), 105-122. https://doi.org/10.15517/aie.v14i2.14817 Estrella, S., Olfos, R., Morales, S., y Vidal-Szabó, P. (2017). Argumentaciones de estudiantes de primaria sobre representaciones externas de datos: componentes lógicas, numéricas y geométricas. Revista Latinoamericana de Investigación en Matemática Educativa, 20(3), 345-370. https://doi.org/10.12802/relime.17.2034 Estrella, S., Olfos, R., Vidal-Szabó, P., Morales, S., y Estrella, P. (2018). Competencia meta-representacional en los primeros grados: representaciones externas de datos y sus componentes. Revista Enseñanza de las Ciencias, 36(2), 143-163. https://doi.org/10.5565/rev/ensciencias.2143 Estrella, S., Zakaryan, D., Olfos, R., y Espinoza, G. (2020). How teachers learn to maintain the cognitive demand of tasks through Lesson Study. Journal of Mathematics Teacher Education, https://doi.org/10.1007/s10857-018-09423-y Friel, S. N., Curcio, F. R., y Bright, G. W. (2001). Making sense of graphs: Critical factors influencing comprehension and instructional implications. Journal for Research in Mathematics Education, 124-158. https://psycnet.apa.org/doi/10.2307/749671 Gabucio, F., Martí, E., Enfedaque, J., Gilabert, S., y Konstantinidou, A. (2010). Niveles de comprensión de las tablas en estudiantes de primaria y secundaria. Cultura y Educación, 22(2), 183-197. https://doi.org/10.1174/113564010791304528 Kaufman, E. L., Lord, M. W., Reese, T. W., y Volkmann, J. (1949). The discrimination of visual number. The American journal of psychology, 62(4), 498-525. Lehrer, R., y Schauble, L. (2000). Inventing data structures for representational purposes: Elementary grade students' classification models. Mathematical Thinking and Learning, 2(1-2), 51-74. https://psycnet.apa.org/doi/10.1207/S15327833MTL0202_3 Martí, E. (2009). Tables as cognitive tools in primary education. En C. Andersen, N. Scheuer, M. Pérez Echeverría, y E.V. Teubal (Coord.), Representational systems and practices as learning tools (pp. 133-148). Rotterdam: Sense Publishers. Martí, E., García-Mila, M., Gabucio, F., y Konstantinidou, K. (2010). The construction of a double-entry table: a study of primary and secondary school students’ difficulties. European Journal of Psychology of Education, 26(2), 215-234. www.jstor.org/stable/23883606 Martí, E., Pérez, E., y De la Cerda, C. (2010). Alfabetización gráfica. La apropiación de las tablas como instrumentos cognitivos. Contextos, 10, 65-78. Martínez, M., y Brizuela, B. (2006). A third grader’s way of thinking about linear function tables. Journal of Mathematical Behavior, 25, 285-298. https://doi.org/10.1016/j.jmathb.2006.11.003 Ministerio de Educación de Chile. (2018). Bases Curriculares Primero a Sexto Básico. Santiago de Chile: Unidad de Currículum y Evaluación, Ministerio de Educación de Chile. Recuperado desde https://www.curriculumnacional.cl/614/articles-22394_bases.pdf Moore, D. S., y Cobb, G. W. (2000). Statistics and mathematics: Tension and cooperation. The American Mathematical Monthly, 107(7), 615-630. Nisbet, S., Jones, G., Thornton, C., Langrall, C., y Mooney, E. (2003). Children’s Representation and Organisation of Data. Mathematics Education Research Journal, 15(1), 42-58. https://doi.org/10.1007/BF03217368 Pérez-Echeverría, M., y Scheuer, N. (2009). External Representations as Learning Tools: An Introduction. En C. Andersen, N. Scheuer, M. Pérez-Echeverría, y E. Teubal (Eds.), Representational systems and practices as learning tools (pp. 1-17). Rotterdam: Sense Publishers. Pfannkuch, M., y Rubick, A. (2002). An exploration of students’ statistical thinking with given data. Statistics Education Research Journal, 1(2), 4-21. https://iase-web.org/documents/SERJ/SERJ1(2).pdf Sepúlveda, A., Díaz-Levicoy, D., y Jara, D. (2018). Evaluación de la comprensión sobre Tablas Estadísticas en estudiantes de Educación Primaria. Bolema: Boletim de Educação Matemática, 32(62), 869-886. http://dx.doi.org/10.1590/1980-4415v32n62a06 Tukey, J. (1977). Exploratory data analysis. Reading, MA: Addison-Wesley. Wu, H., y Krajcik, J. (2006). Inscriptional Practices in Two Inquiry-Based Classrooms: A Case Study of Seventh Graders’ Use of Data Tables and Graphs. Journal of Research in Science Teaching, 43(1), 63-95. https://doi.org/10.1002/tea.20092 Financiamiento: Esta investigación se ha realizado dentro del proyecto subvencionado por Agencia Nacional de Investigación y Desarrollo (ANID) / FONDECYT 1200346 y Proyecto VRIE-PUCV 039.439/2020

Playing curriculum development based on early childhood learning is a major issue in international early childhood education discussions. This study aims to look at the concepts and practices of play-based curriculum in early childhood education institutions. The study uses qualitative methods with the CIPP model program evaluation on play-based curriculum. Data collection techniqueswere carriedout using participatory observation, document studies and interviews. Participants are early childhood educators, early childhood and parents. The results found that the play-based curriculum has not yet become the main note in the preparation and development of concepts and learning practices in early childhood. Play-based curriculum quality standards have not provided a solid and clear concept foundation in placing play in the center of learning models. Other findings the institution has not been able to use the DAP (Developmentally Appropriate Practice) approach fully, and has not been able to carry out the philosophy and ways for developing a curriculum based on play. However, quite a lot of research found good practices implemented in learning centers in early childhood education institutions, such as develop children's independence programs through habituation to toilet training and fantasy play. Keywords: Play Based Curriculum, Center Learning Model, Curriculum Quality Standards, Early Childhood Education Reference Alford, B. L., Rollins, K. B., Padrón, Y. N., & Waxman, H. C. (2016). Using Systematic Classroom Observation to Explore Student Engagement as a Function of Teachers’ Developmentally Appropriate Instructional Practices (DAIP) in Ethnically Diverse Pre- kindergarten Through Second-Grade Classrooms. Early Childhood Education Journal, 44(6), 623–635. https://doi.org/10.1007/s10643-015-0748-8 Ali, E., Kaitlyn M, C., Hussain, A., & Akhtar, Z. (2018). the Effects of Play-Based Learning on Early Childhood Education and Development. Journal of Evolution of Medical and Dental Sciences, 7(43), 4682–4685. https://doi.org/10.14260/jemds/2018/1044 Ashiabi, G. S. (2007). Play in the preschool classroom: Its socioemotional significance and the teacher’s role in play. Early Childhood Education Journal, 35(2), 199–207. https://doi.org/10.1007/s10643-007-0165-8 Berk, L. E., & Meyers, A. B. (2013). The role of make-believe play in the development of executive function. American Journal of Play, 6(1), 98–110. Bodrova, E., Germeroth, C., & Leong, D. J. (2013). Play and Self-Regulation: Lessons from Vygotsky. American Journal of Play, 6(1), 111–123. Retrieved from http://eric.ed.gov/?id=EJ1016167 Chien, N. C., Howes, C., Burchinal, M., Pianta, R. C., Ritchie, S., Bryant, D. M., ... Barbarin, O. A. (2010). Children’s classroom engagement and school readiness gains in prekindergarten. Child Development, 81(5), 1534–1549. https://doi.org/10.1111/j.1467-8624.2010.01490.x Cortázar, A. (2015). Long-term effects of public early childhood education on academic achievement in Chile. Early Childhood Research Quarterly, 32, 13–22. https://doi.org/10.1016/j.ecresq.2015.01.003 Danniels, E., & Pyle, A. (2018). Defining Play-based Learning. In Encyclopedia on Early Childhood Development (Play-Based, pp. 1–5). OISE University of Toronto. Ejuu, G., Apolot, J. M., & Serpell, R. (2019). Early childhood education quality indicators: Exploring the landscape of an African community perspective. Global Studies of Childhood. https://doi.org/10.1177/2043610619832898 Faas, S., Wu, S.-C., & Geiger, S. (2017). The Importance of Play in Early Childhood Education: A Critical Perspective on Current Policies and Practices in Germany and Hong Kong. Global Education Review, 4(2), 75–91. Fisher, K. R., Hirsh-Pasek, K., Newcombe, N., & Golinkoff, R. M. (2013). Taking shape: Supporting preschoolers’ acquisition of geometric knowledge through guided play. Child Development, 84(6), 1872–1878. https://doi.org/10.1111/cdev.12091 Hennessey, P. (2016). Full – Day Kindergarten Play-Based Learning : Promoting a Common Understanding. Education and Early Childhood Development, (April), 1–76. Retrieved from gov.nl.ca/edu Holt, N. L., Lee, H., Millar, C. A., & Spence, J. C. (2015). ‘Eyes on where children play’: a retrospective study of active free play. Children’s Geographies, 13(1), 73–88. https://doi.org/10.1080/14733285.2013.828449 Jay, J. A., & Knaus, M. (2018). Embedding play-based learning into junior primary (Year 1 and 2) Curriculum in WA. Australian Journal of Teacher Education, 43(1), 112–126. https://doi.org/10.14221/ajte.2018v43n1.7 Kathy, E. (2016). Play-based versus Academic Preschools. Parent Cooperative Preschool International, 1–3. Klenowski, V., & Wyatt-Smith, C. (2012). 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BackgroundThe experience of art offers an emerging field in healthcare staff development, much of which is appropriate to the practice of palliative care. The workings of aesthetic learning interventions such as interactive theatre in relation to palliative and end of-life care staff development programmes are widely uncharted.AimTo investigate the use of aesthetic learning interventions used in palliative and end-of-life care staff development programmes.DesignScoping review.Data sourcesPublished literature from 1997 to 2015, MEDLINE, CINAHL and Applied Social Sciences Index and Abstracts, key journals and citation tracking.ResultsThe review included 138 studies containing 60 types of art. Studies explored palliative care scenarios from a safe distance. Learning from art as experience involved the amalgamation of action, emotion and meaning. Art forms were used to transport healthcare professionals into an aesthetic learning experience that could be reflected in the lived experience of healthcare practice. The proposed learning included the development of practical and technical skills; empathy and compassion; awareness of self; awareness of others and the wider narrative of illness; and personal development.ConclusionAesthetic learning interventions might be helpful in the delivery of palliative care staff development programmes by offering another dimension to the learning experience. As researchers continue to find solutions to understanding the efficacy of such interventions, we argue that evaluating the contextual factors, including the interplay between the experience of the programme and its impact on the healthcare professional, will help identify how the programmes work and thus how they can contribute to improvements in palliative care.References. 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<span lang="EN-US">Tujuan dari penelitian ini adalah untuk mengetahui bagaimana metode dan proses internalisasi nilai-nilai pendidikan agama Islam bagi remaja di lingkungan keluarga di Desa Lae Bersih, Kecamatan Penanggalan, Kota Subulussalam, Provinsi Nangroe Aceh Darussalam. Metode penelitian ini ialah kualitatif, menekankan pada realitas sosial secara utuh, kompleks, dinamis dan interaktif dengan mempertimbangkan keadaan objek yang alamiah. Data yang diperoleh dapat berupa kata, kalimat, diagram atau gambar. Teknik pengumpulan data dalam penelitian ini adalah observasi, wawancara dengan jenis wawancara terstruktur, dan dokumentasi. Adapun teknik analisis yang peneliti gunakan ialah reduksi data, penyajian data dan verifikasi data. Hasil penelitian menunjukkan bahwa kondisi sosial religius remaja di Desa Lae bersih cenderung baik dikarenakan anak-anak remaja masih banyak yang peduli dan berkontribusi pada kegiatan sosial keagamaan sehingga dapat menumbuhkan rasa kekeluargaan antar warga. Metode yang dilakukan dalam proses internalisasi nilai-nilai pendidikan agama Islam ialah metode nasehat, keteladanan, pembiasaaan, diskusi dan pemberian targhib dan tarhib agar anak remaja di Desa Lae Bersih dapat semakin baik akhlaknya. Dalam proses internalisi nilai-nilai pendidikan agama Islam terdapat 3 tahapan yaitu tahapan transformasi nilai yaitu anak mau mendengarkan orang tua, tahapan transaksi nilai dimana orang tua mulai mengajak anak untuk mempraktekkan nilai-nilai agama dan tahap transinternalisasi nilai yaitu tahapan di mana anak sudah mau dan mampu mempraktekkan nilai-nilai agama yang diajarkan.</span><!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:TrackMoves/> <w:TrackFormatting/> <w:PunctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:DoNotPromoteQF/> <w:LidThemeOther>EN-US</w:LidThemeOther> <w:LidThemeAsian>X-NONE</w:LidThemeAsian> <w:LidThemeComplexScript>AR-SA</w:LidThemeComplexScript> <w:Compatibility> <w:BreakWrappedTables/> <w:SnapToGridInCell/> <w:WrapTextWithPunct/> <w:UseAsianBreakRules/> 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mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-priority:99; mso-style-parent:""; mso-padding-alt:0cm 5.4pt 0cm 5.4pt; mso-para-margin:0cm; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:10.0pt; font-family:"Calibri","sans-serif"; mso-bidi-font-family:"Times New Roman";} </style> <![endif]--><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-no-proof: yes;">Adanan, A. B. S. (2021). Pendekatan Pendidikan: Keteladanan, Nasehat dan Perhatian. <em>AUD Cendekia: Journal of Islamic Early Childhood Education</em>, <em>1</em>(1).</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-ansi-language: IT; mso-no-proof: yes;" lang="IT">Al-Maraghi, A. M. (2006). <em>Tafsir Al-Maraghiy</em>. Beirut: Dar Al-Fikr.</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-ansi-language: IT; mso-no-proof: yes;" lang="IT">Aprianto, I. (2022). <em>Landasan Pendidikan</em>. Boyolali: Penerbit Lakeisha.</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-ansi-language: IT; mso-no-proof: yes;" lang="IT">Arfah, K. S. S., &amp; Aini, E. N. (2018). <em>Konseling Islami untuk Mengatasi Kenakalan Remaja yang Orang Tuanya Bercerai dengan Metode Targhib wa Tarhib</em>. Universitas Muhammadiyah Purwokerto.</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-ansi-language: IT; mso-no-proof: yes;" lang="IT">Arifuddin, &amp; Ilham, M. (2020). Internalisasi Nilai-Nilai Pendidikan’Kontribusi Lembaga Infromasi terhadap Pembinaan Karakter Anak. </span><em><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-no-proof: yes;">Iqro’ Journal of Islam</span></em><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-no-proof: yes;">, <em>3</em>(1).</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-no-proof: yes;">Dahwadin, &amp; Nugraha, F. S. (2019). <em>Motivasi dan Pembelajaran Pendidikan Agama Islam</em>. </span><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-ansi-language: IT; mso-no-proof: yes;" lang="IT">Cikarang: Penerbit Mangku Bumi.</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-ansi-language: IT; mso-no-proof: yes;" lang="IT">Daulay, H. P. (2019). <em>Pendidikan Islam di Indonesia</em>. Jakarta: Kencana.</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-ansi-language: IT; mso-no-proof: yes;" lang="IT">Diananda, A. (2018). Psikologi Remaja dan Permasalahannya. <em>Istighna: Jurnal Pendidikan Dan Pemikiran Islam</em>, <em>1</em>(1).</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-ansi-language: IT; mso-no-proof: yes;" lang="IT">Fitri, G., &amp; Yarni, L. (2022). Hubungan Interaksi dalam Keluarga dengan Kepercayaan Diri Remaja di Jorong Cupak Nagari Pakan Sinayan. </span><em><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-no-proof: yes;">Indonesian Research Journal on Education</span></em><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-no-proof: yes;">, <em>2</em>(2).</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-no-proof: yes;">Hastuti, R. (2021). <em>Psikologi Remaja</em>. Medan: Penerbit Andi.</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-no-proof: yes;">Hidayat, T. (2018). Pendidikan dalam Perspektif Islam gan Penannya dalam Membina Kepribadian Islami. <em>Jurnal Mudarrisuna: Media Kajian Pendidikan Agama Islam</em>, <em>8</em>(2).</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-no-proof: yes;">Indonesia, R. <em>Undang-undang Nomor 20 Tahun 2003 tentang Sistem Pendidikan Nasional</em>. , (2003). </span><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-ansi-language: IT; mso-no-proof: yes;" lang="IT">Indonesia.</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-ansi-language: IT; mso-no-proof: yes;" lang="IT">Isoani, F. (2023). <em>Psikologi Perkembangan</em>. Cirebon: Lovrinz Publishing.</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-ansi-language: IT; mso-no-proof: yes;" lang="IT">Karlinawati. (2021). <em>Psikologi Remaja</em>. Jakarta: RajaGrafindo Persada.</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-ansi-language: IT; mso-no-proof: yes;" lang="IT">Khasanah, W. (2019). Peranan Remaja Masjid Ar-Rahman dalam Pembentukan Karakter Remaja yang Religius Desa Waekasar Kecamatan Waeapo Kabupaten Buru. <em>Kuttab</em>, <em>1</em>(1).</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-ansi-language: IT; mso-no-proof: yes;" lang="IT">Mahyudin. (2018). <em>Tafsir Tarbawi, Kajian Ayat-Ayat Al-Qur’an Dengan Tafsir Pendidikan</em>. Jakarta: Kalam Mulia.</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-ansi-language: IT; mso-no-proof: yes;" lang="IT">Muzakkir. (2022). Penerapan Metode Nasihat dalam Meningkatkan Kemampuan Mengerjakan Ibadah Shalat pada Anak Usia 5-6 Tahun di TK Aisyiyah Bustanul Athfal II Prumnas. <em>Al-Asma: Journal of Islamic</em>, <em>4</em>(2).</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-ansi-language: IT; mso-no-proof: yes;" lang="IT">Muzayyanah, A. (2020). <em>Internalisasi Nilai-Nilai Pendidikan Agama Islam pada Peserta Didik di MTSn 1 Nganjuk</em>. IAIN Kediri.</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-ansi-language: IT; mso-no-proof: yes;" lang="IT">Nopriyadi, I. (2022). Penanaman Nilai-Nilai Religius oleh Mahasiswa Prodi PAI UIN Fatmawati Sukarno Melalui Kegiatan Remaja Masjid Al-Amin di Desa Lubuk Kumbung Kecamatan Karang Jaya Kabupaten Muratara Sumatera Selatan. </span><em><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-no-proof: yes;">Ghaitsa: Islamic Education Journal</span></em><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-no-proof: yes;">, <em>3</em>(3).</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-no-proof: yes;">Nurkholis. (2023). <em>Internalisasi Nilai Pendidikan Islam pada Anak Terlantar</em>. Lombok: Penerbitp4i.</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-no-proof: yes;">Octavia, A. S. (2020). <em>Motivasi Belajar dalam Perkembangan Remaja</em>. Jakarta: Deepublish.</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-ansi-language: IT; mso-no-proof: yes;" lang="IT">RI, K. A. (2019). <em>Al-Qur’an dan Terjemahnya</em>. Jakarta: Lajnah Pentashihan Mushaf Al-Qur’an.</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-ansi-language: IT; mso-no-proof: yes;" lang="IT">Ristiana, N. (2020). Internalisasi Nilai-Nilai Keislaman Pespektif Sosial Kemasyarakatan. <em>Jurnal PAI</em>, <em>3</em>(1).</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-ansi-language: IT; mso-no-proof: yes;" lang="IT">Rosidin, &amp; Gufron, M. (2020). <em>Pendidikan Agama Islam</em>. Malang: Edulitera.</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-ansi-language: IT; mso-no-proof: yes;" lang="IT">Rusli. (2022). Internalisasi Nilai-Nilai Pendidikan Islam Oleh Pembina kepada Himpunan Anak Pecinta Islam (HAPIS) di SMA Negeri 3 Teluk Keramat. </span><em><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-no-proof: yes;">Educational Journal: General and Spesific Research</span></em><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-no-proof: yes;">.</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-no-proof: yes;">Samsuri, S. (2020). Hakikat Fitrah Manusia dalam Islam. <em>Al-Ishlah: Jurnal Pendidikan Islam</em>, <em>18</em>(1).</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-ansi-language: IT; mso-no-proof: yes;" lang="IT">Sanusi, A. (2021). Internalisasi Pendidikan Agama Bagi Remaja Melalui Majlis Ta’lim. <em>Al-Fikri Jurnal Studi Dan Penelitian Pendidikan Islam</em>, <em>4</em>(02).</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-ansi-language: IT; mso-no-proof: yes;" lang="IT">Sugiyono. (2019). <em>Metode Penelitian Kuantitatif, Kualitatif, dan R&amp;D</em>. Bandung: Alfabeta.</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-ansi-language: IT; mso-no-proof: yes;" lang="IT">Sugiyono. </span><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-no-proof: yes;">(2020). <em>Metode Penelitian dan Pengembangan</em></span><em><span style="mso-bidi-font-size: 12.0pt; mso-no-proof: yes;"> </span></em><em><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-no-proof: yes;">: Research and Development</span></em><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-no-proof: yes;">. </span><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-ansi-language: IT; mso-no-proof: yes;" lang="IT">Bandung: Alfabeta.</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-ansi-language: IT; mso-no-proof: yes;" lang="IT">Sugiyono, D. (2021). <em>Metode Penelitian Kuantitatif Kualitatif</em>. Bandung: Alfabeta.</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-ansi-language: IT; mso-no-proof: yes;" lang="IT">Wahid, A. (2022). Internalisasi Nilai-nilai Pendidikan Agama di Sekolah: Perpektif Manajemen Pendidikan Islam. </span><em><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-no-proof: yes;">Journal of Educational Management Research</span></em><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-no-proof: yes;">.</span></p><p class="MsoNormal" style="margin-left: 21.3pt; text-align: justify; text-indent: -21.3pt; mso-pagination: none; mso-layout-grid-align: none; text-autospace: none;"><span style="mso-bidi-font-size: 12.0pt; font-family: 'Calisto MT','serif'; mso-no-proof: yes;">Warsah, I. (2022). <em>Pendidikan Islam dalam Keluarga: Stufi Psikologis dan Sosiologis Masyarakat Multi Agama Desa Suro Bali</em>. 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Introduction Long pauses without chest compressions (CC) have been identified in CPR provided by EMS professionals for out-of-hospital cardiac arrest (OOHCA). The 2005 AHA ECC CPR guidelines emphasize CC. The 2005 AHA Basic Life Support (BLS) for Healthcare Professionals (HCP) course introduced a training method with more CPR skills practice during the DVD based course. The purpose of this before/after study was to determine whether CC rates increased after introduction of the 2005 course. Methods This urban EMS system has 400 cardiac etiology OOHCA events annually. A convenience sample of 49 continuous electronic ECG recordings of VF patients was analyzed with the impedance channel of the LIFEPAK 12 (Physio-Control, Redmond WA) and proprietary software. A trained researcher verified the automated analysis. Each CC during the resuscitation attempt and pauses in CC before and after the first defibrillation shock were noted. The time of return of spontaneous circulation (ROSC) was determined by medical record review and onset of regular electrical activity without CC. Medical records were reviewed for outcome to hospital discharge. The EMS patient care protocol for VF was changed on July 1, 2006 to comply with the 2005 AHA ECC guidelines. Cases were grouped by the OOHCA date: 9/2004 to 12/31/2006 (pre) and 7/1/2006 to 4/21/2007 (post). EMS personnel began taking the 2005 BLS for HCP course during spring 2006. Monthly courses over 3 years will recertify 1500 personnel. Results 29 cases were analyzed from the pre group and 20 from the post group. Compressions per minute increased from a mean (±SD) of 47 ± 16 pre to 75 ± 33 post (P < 0.01). The mean count of shocks given per victim decreased from 4.5 ± 4.0 pre to 2.8 ± 1.8 post (P < 0.04). The CC pause before the first shock was unchanged (23.6 ± 18.4 seconds to 22.1 ± 17.9). but the CC pause following that shock decreased significantly from 48.7 ± 63.2 to 11.8 ± 22.5 (p=0.008). Rates of ROSC (55% pre, 50% post) and survival to discharge (15% pre, 13% post) were similar. Conclusion Following introduction of the 2005 BLS for HCP course and the EMS protocol change, the quality of CPR delivered to victims of OOHCA improved significantly compared with pre-2006 CPR. The sample size was too small to detect differences in survival rates.

Kehadiran buku ini menjadi ‘angin segar’ bagi pegiat sejarah kenabian (sirah nabawiyyah) Muhammad SAW sekaligus pegiat ilmu tafsir Alquran. Pasalnya, jika berbicara mengenai sejarah dalam litaratur yang berbahasa Indonesia, akan didapati seperti karya Ibnu Hisyam dan Ibnu Ishaq, dengan sistematika yangditebali oleh riwayat-riwayat (baca: hadis). Namun, dalam buku yang ditulis oleh Aksin Wijaya ini adalah sebuah bentuk penjelasan dari sirah yang ditulis oleh Izzat Darwazah dalam karya nya yang berjudul Tafsir al-Hadis. Tafsir al-Hadis adalah sebuah tafsir Alquran yang menggambarkan sirah Nabi Muhammad dengan menggunakan sistematika tartib an-Nuzuli Alquran. Hal ini untuk melacak sejarah Nabi dengan mengikuti alur kronologi turunnya Alquran, yakni dari surat al-Alaq hingga wahyu terakhir turun. Bukan dari sistematikatartib mushafi, yakni dari al-Fatihah hingga An-Nass. Oleh sebab itu, hal ini juga menarik perbincangan dikalangan para pegiat tafsir Alquran. Sebab mayoritas tafsir Alquran ditulis dengan merujuk pada sistematika tartib mushafi. Aksin Wijaya, tercatat sebagai dosen STAIN Ponorogo dan STAIN Kediri. Lahir di Sumenep, 1 Juli 1974. Studi S2 dan S3 nya ia tempuh di Universitas Negeri Sunan Kalijaga, Yogyakarta. Ia merupakan dosen dengan segudang karya. Beberapa penghargaan diraihnya seperti juara 2 dalam Thesis Award yang didakan oleh Kemenag RI pada tahun 2006 juga sebagai juara 2 dosen teladan Nasional dalam bidang Islamic Studies yang diadakan oleh Kemenag RI, pada tahun 2015. Ia memiliki 15 karya tulis dalam bentuk buku dan terjemahan, di antaranya ialah Menggugat Otentisitas Wahyu Tuhan: Kritik atas Nalar Tafsir Gender (Yogyakarta: Safiria Insania, 2004), Arah Baru Studi Ulum Alquran: Memburu pesan Tuhan dibalik Fenomena Budaya (Yogyakarta: Pustaka Pelajar, 2009), Teori Interpretasi Alquran Ibnu Rusyd: Kritik Ideologis-Hermeneutis (Yogyakarta: LKIS, 2009), Problematika Pemikiran Arab Kontemporer, terjemahan dari Isykaliyat al-Fikr al-Arabi Al-Muasyir karya Muhammad Abid al-Jabiri, filsuf asal Maroko, (Yogyakarta: Pustaka Pelajar, 2015). Sedangkan karya dalam benuk artikel jurnal Ilmiah tercatat sejumlah 31 karya. Mayoritas artikel-artikel tersebut di bidang studi Islam, baik sejarah, hukum, tafsir, Alquran, maupun pemikiran Islam secara umum. Perjalanan hidupnya dengan karya yang melimpah.Jika dilihat dari reputasi dan kapasitas keilmuannya, maka dalam hal ini, ia merupakan seorang yang kompeten ketika berbicara sejarah wacana dan tafsir Alquran. Buku Sejarah Kenabian: Dalam perspektif Tafsir Nuzuli Muhammad Izzat Darwazah ini ditulis atas dorongan pribadi dengan melihat wacana tafsir Alquran yang berkembang di Indonesia. Terutama dalam segi sistematika penulisan tafsir pada umumnyaditulis berdasarkan tartib mushafi. Oleh karena itu, Aksin tertarik untuk mengkaji sejarah kenabian dalam tafsir Izzat Darwazah tersebut, yang dirasa unik. Sumber-sumber yang ia gunakan dalam hal ini yakni sumber-sumber primer dan sekunder. Ia merujuk langsung dari karya-karya Izzat darwazah, seperti al-Tafsir al-Hadis, Sirah ar-Rasul: Suwar Muqtabasah min Alquran, ‘Ashr al-Nabi wa Baiatuhu Qabla Bi’tsah, dan lain-lain. Sedangkan mengenai wacana tafsir Nuzuli ia juga merujuk langsung terhadap karya Muhammad Abid al-Jâbiri, Fahm al-Qur’ân: at-Tafsir al-Wadh Hasb Tartib an-Nuzul, Ibnu Qarnas, Ahsan al-Qashshash dan Tarikh Alquran karya Thodore Noldeke.Jenis buku (kind of book) ini tergolong pada buku tentang sejarah. Sebuah buku ilmiah yang disajikan dengan penuh analisis. Oleh karena itu, buku ini sangat direkomendasikan untuk para peneliti, mahasiswa, maupun dosen pegiat sejarah Islam awal. Dalam pengantar buku ini, dijelaskan bagaimana Aksin mencari karyakarya Izzat darwazah, selama bertahun-tahun, dari Mesir hingga ke Maroko. Rencana awal penelitian ini akan dianalisis secara kritis, namun diubah dengan analisis deskripif. Hal ini disebabkan karena karya-karya Izzat Darwazah termasuk karya-karya yang ditinggalkan, hanya segelintir orang yang menelitinya. Selain itu, karya-karya yang ditulis oleh Izzat Darwazat ditulis oleh menurut Aksin ditulis secara berkaitan dan sistematis. Keterkaitan antara sejarah dan tafsir merupakan titik tolak Aksin untuk menggali lebih dalam karya-karya lebih dalam pemikiran Izzat Dawazah ini.Al-Tafsir al-Hadis karya Izzat Darwazah ditulis dengan sistematika tartib nuzuli, tentu saja sistematika ini bisa menimbulkan kontroversi. Pasalnya, pernyataan bahwa mushaf Alquran disusun secara tauqifi dan tafsir ada sebuah tafsir yang disusun dengan tartib nuzuli, Aksin menjelaskan jika tafsir dengan metode temaik (maudhu’i) dibenarkan maka tentu saja tafsir dengan semacam ini juga dapat dibenarkan. Izzat Darwazah sendiri membedakan, antara Alquran sebagai objek bacaan, yang sudah semestinya dibaca dengan sesuai dengan tartib ustmani dan sebagai objek tafsir, yang mengandung nilai dan seni untuk dikaji, sehingga tidak ada hubungannya antara bacaan dan tartib Alquran. Dari sini dapat disimpulkan bahwa karya yang ditulis Aksin ini menemukan bahkan mendorong untuk memicu adanya ide baru (logic of discovery) dalam pasar raya intelektual indonesia, bahwa membaca membaca sirah kenabian bisa dilakukan dengan cara mengikuti arus kronologi turunnya Alquran.Adapun sturktur bahasan (method of organization), disusun dengan sangat sistematis dan logis. Buku ini terdiri dari enam bab. Bab pertama berisi pendahuluan dan kerangka teori. Bab dua, berisi mengenai biografi intelektuan Izzat Darwazah. Bab tiga, berisi tentang metode tafsir nuzuli Izzat Darwazah. Pada bab ini Ia terlebih dahulu menjelaskan metode tafsir nuzuli dari beberapa tokoh, baik dari Muslim (insider) mapun non-Muslim (outsider). Hal ini ditujukan untuk memahami ideal tafsir Alquran dan menafsirkan sejarah kenabian Muhammad. Pada bab keempat, berisi inti pembahasan sejarah kenabian Muhammad pespeksif tafsir nuzuli. Kemudian pada bab terkahir, enam,berisi kesimpulan sekaligus saran untuk peneliti selanjutnya. Buku ini dilengkapi tabel susunan Alquran mushafi dan nuzuli, antara mushaf ustmani, Theodore Noldeke, Muhammad Abid al-Jabiri, Ibnu Qarnas, Khattat Qudur Ugly, dan Muhammad Izzat Darwazah. Hal ini sangat membantu untuk melihat perbandingan susunan Alquran nuzuli antara satu tokoh dengan tokoh yang lain. Buku ini juga dilengkapi glosairum dan indeks, yang bisa membantu pembaca untuk memahami istilah-istilah yang jarang digunakan dan tokoh yang belum dipahami. Menengei kualitas penulisan (quality of writing), buku ini kemas dengan format baik, terstruktur secara sistematis sebagaimana baiknya karya ilmiah. Dilengkapi juga dengan trasliterasi, pilihan kata (diksi) yang baik sehingga tidak mengulang-ulang, catatan kaki untuk mempermudah pembaca, serta daftar pustaka. Aksin juga mengatakan bahwa tema bahasan ini juga memberi ruang untuk dianalisis kembali (further research) karena buku ini hanya menyajikan sejarah objek kenabian dalam pandangan Izzat Darwazah, selebihnya kajian kritis terhadap sejarah kenabian Muhammad dipersilahkan kepada peneliti selanjutnya.Oleh karena itu, Aksin banyak menginspirasi penulis untuk meneliti lebih lanjut tentang sejarah kenabian dalam tafsir-tafsir yang ditulis secara nuzuli. Buku ini amat penting untuk dikonsumsi oleh para pegiat sejarah dan atau tafsir Alquran. Penilaian umum (overall-judgement) dari buah karya Aksin Wijaya ini, ialah sebuah karya sejarah objektif yang mengantarkan kita terhadap diskusidiskusi menarik selanjutnya, hasil-hasil kreatif dari setiap analisisnya memberikan catatan penting mengenai sejarah Islam awal. Menurut saya, karya sejarah kenabian perspektif tartib nuzuli berbahasa Indonesia yang cukup panjang dan lengkap, sehingga informasinya akan memenuhi kebutuhan para peneliti, dosen, maupun mahasiswa.

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I was born illegitimate. Born on an existential precipice. My unwed mother was 36 years old when she relinquished me. I was the fourth baby she was required to give away. After I emerged blood stained and blue tinged – abject, liminal – not only did the nurses refuse me my mother’s touch, I also lost the sound of her voice. Her smell. Her heart beat. Her taste. Her gaze. The silence was multi-sensory. When they told her I was dead, I also lost, within her memory and imagination, my life. I was adopted soon after but not told for over four decades. It was too shameful for even me to know. Imprinted at birth with a psychological ‘death’, I fell, as a Late Discovery Adoptee (LDA), into a socio-cultural and psychological abyss, frozen at birth at the bottom of a parturitive void from where, invisible within family, society, and self I was unable to form an undamaged sense of being.Throughout the 20th century (and for centuries before) this kind of ‘social abortion’ was the dominant script. An adoptee was regarded as a bastard, born of sin, the mother blamed, the father exonerated, and silence demanded (Lynch 28-74). My adoptive mother also sinned. She was infertile. But, in taking me on, she assumed the role of a womb worthy woman, good wife, and, in her case, reluctant mother (she secretly didn’t want children and was privately overwhelmed by the task). In this way, my mother, my adoptive mother, and myself are all the daughters of bereavement, all of us sacrificed on the altar of prejudice and fear that infertility, sex outside of marriage, and illegitimacy were unspeakable crimes for which a price must be paid and against which redemptive protection must be arranged. If, as Thomas Keneally (5) writes, “original sin is the mother fluid of history” then perhaps all three of us all lie in its abject waters. Grotevant, Dunbar, Kohler and Lash Esau (379) point out that adoption was used to ‘shield’ children from their illegitimacy, women from their ‘sexual indiscretions’, and adoptive parents from their infertility in the belief that “severing ties with birth family members would promote attachment between adopted children and parents”. For the adoptee in the closed record system, the socio/political/economic vortex that orchestrated their illegitimacy is born out of a deeply, self incriminating primal fear that reaches right back into the recesses of survival – the act of procreation is infested with easily transgressed life and death taboos within the ‘troop’ that require silence and the burial of many bodies (see Amanda Gardiner’s “Sex, Death and Desperation: Infanticide, Neonaticide, and Concealment of Birth in Colonial Western Australia” for a palpable, moving, and comprehensive exposition on the links between 'illegitimacy', the unmarried mother and child murder). As Nancy Verrier (24) states in Coming Home to Self, “what has to be understood is that separation trauma is an insidious experience, because, as a society, we fail to see this experience as a trauma”. Indeed, relinquishment/adoption for the baby and subsequent adult can be acutely and chronically painful. While I was never told the truth of my origins, of course, my body knew. It had been there. Sentient, aware, sane, sensually, organically articulate, it messaged me (and anyone who may have been interested) over the decades via the language of trauma, its lexicon and grammar cellular, hormonal, muscular (Howard & Crandall, 1-17; Pert, 72), the truth of my birth, of who I was an “unthought known” (Bollas 4). I have lived out my secret fatality in a miasmic nebula of what I know now to be the sequelae of adoption psychopathology: nausea, physical and psychological pain, agoraphobia, panic attacks, shame, internalised anger, depression, self-harm, genetic bewilderment, and generalised anxiety (Brodzinsky 25-47; Brodzinsky, Smith, & Brodzinsky 74; Kenny, Higgins, Soloff, & Sweid xiv; Levy-Shiff 97-98; Lifton 210-212; Verrier The Primal Wound 42-44; Wierzbicki 447-451) – including an all pervading sense of unreality experienced as dissociation (the experience of depersonalisation – where the self feels unreal – and derealisation – where the world feels unreal), disembodiment, and existential elision – all characteristics of Post Traumatic Stress Disorder (PTSD). In these ways, my body intervened, acted out, groaned in answer to the social overlay, and from beyond “the dermal veil” tried to procure access, as Vicky Kirby (77) writes, to “the body’s opaque ocean depths” through its illnesses, its eloquent, and incessantly aching and silent verbosities deepened and made impossibly fraught because I was not told. The aim of this paper is to discuss one aspect of how my body tried to channel the trauma of my secret fatality and liminality: my pre-disclosure art work (the cellular memory of my trauma also expressed itself, pre-disclosure, through my writings – poetry, journal entries – and also through post-coital glossolalia, all discussed at length in my Honours research “Womb Tongues” and my Doctoral Dissertation “The Womb Artist – A Novel: Translating Pre-verbal Late Discovery Adoption Trauma into Narrative”). From the age of thirty onwards I spent twelve years in therapy where the cause of my childhood and adult psychopathology remained a mystery. During this time, my embodied grief and memories found their way into my art work, a series of 5’ x 3’ acrylic paintings, some of which I offer now for discussion (figures 1-4). These paintings map and express what my body knew but could not verbalise (without language to express my grief, my body found other ways to vent). They are symptom and sign of my pre-verbal adoption trauma, evidence that my body ‘knew’ and laboured ceaselessly and silently to find creative ways to express the incarcerated trauma. Post disclosure, I have used my paintings as artefacts to inform, underpin, and nourish the writing of a collection of poetry “Womb Tongues” and a literary novel/memoir “The Womb Artist” (TWA) in an ongoing autoethnographical, performative, and critical inquiry. My practice-led research as a now conscious and creative witness, fashions the recontextualisation of my ‘self’ into my ‘self’ and society, this time with cognisant and reparative knowledge and facilitates the translation of my body’s psychopathology and memory (explicit and implicit) into a healing testimony that explores the traumatised body as text and politicizes the issues surrounding LDAs (Riley 205). If I use these paintings as a memoirist, I use them second hand, after the fact, after they have served their initial purpose, as the tangible art works of a baby buried beneath a culture’s prejudice, shame, and judgement and the personal cries from the illegitimate body/self. I use them now to explore and explain my subclinical and subterranean life as a LDA.My pre-disclosure paintings (Figures 1-4) – filled with vaginal, fetal, uterine, and umbilical references – provide some kind of ‘evidence’ that my body knew what had happened to me as if, with the tenacity of a poltergeist, my ‘spectral self’ found ways to communicate. Not simply clues, but the body’s translation of the intra-psychic landscape, a pictorial and artistic séance into the world, as if my amygdala – as quasar and signal, homing device and history lesson (a measure, container, and memoir) – knew how to paint a snap shot or an x-ray of the psyche, of my cellular marrow memories (a term formulated from fellow LDA Sandy McCutcheon’s (76) memoir, The Magician’s Son when he says, “What I really wanted was the history of my marrow”). If, as Salveet Talwar suggests, “trauma is processed from the body up”, then for the LDA pre-discovery, non-verbal somatic signage is one’s ‘mother tongue’(25). Talwar writes, “non-verbal expressive therapies such as art, dance, music, poetry and drama all activate the sub-cortical regions of the brain and access pre-verbal memories” (26). In these paintings, eerily divinatory and pointed traumatic, memories are made visible and access, as Gussie Klorer (213) explains in regard to brain function and art therapy, the limbic (emotional) system and the prefrontal cortex in sensorimotor integration. In this way, as Marie Angel and Anna Gibbs (168) suggest, “the visual image may serve as a kind of transitional mode in thought”. Ruth Skilbeck in her paper First Things: Reflections on Single-lens Reflex Digital Photography with a Wide-angled Lens, also discusses (with reference to her photographic record and artistic expression of her mother’s death) what she calls the “dark matter” – what has been overlooked, “left out”, and/or is inexplicable (55) – and the idea of art work as the “transitional object” as “a means that some artists use, conceptually and yet also viscerally, in response to the extreme ‘separation anxiety’ of losing a loved one, to the void of the Unknown” (57). In my case, non-disclosure prevented my literacy and the evolution of the image into language, prevented me from fully understanding the coded messages left for me in my art work. However, each of my paintings is now, with the benefit of full disclosure, a powerful, penetrating, and comprehensible intra and extra sensory cry from the body in kinaesthetic translation (Lusebrink, 125; Klorer, 217). In Figure 1, ‘Embrace’, the reference to the umbilical is palpable, described in my novel “The Womb Artist” (184) this way; “two ropes tightly entwine as one, like a dark and dirty umbilical cord snaking its way across a nether world of smudged umbers”. There is an ‘abject’ void surrounding it. The cord sapped of its colour, its blood, nutrients – the baby starved of oxygen, breath; the LDA starved of words and conscious understanding. It has two parts entwined that may be seen in many ways (without wanting to reduce these to static binaries): mother/baby; conscious/unconscious; first person/third person; child/adult; semiotic/symbolic – numerous dualities could be spun from this embrace – but in terms of my novel and of the adoptive experience, it reeks of need, life and death, a text choking on the poetic while at the same time nourished by it; a text made ‘available’ to the reader while at the same narrowing, limiting, and obscuring the indefinable nature of pre-verbal trauma. Figure 1. Embrace. 1993. Acrylic on canvas.The painting ‘Womb Tongues’ (Figure 2) is perhaps the last (and, obviously, lasting) memory of the infinite inchoate universe within the womb, the umbilical this time wrapped around in a phallic/clitorial embrace as the baby-self emerges into the constrictions of a Foucauldian world, where the adoptive script smothers the ‘body’ encased beneath the ‘coils’ of Judeo-Christian prejudice and centuries old taboo. In this way, the reassigned adoptee is an acute example of power (authority) controlling and defining the self and what knowledge of the self may be allowed. The baby in this painting is now a suffocated clitoris, a bound subject, a phallic representation, a gagged ‘tongue’ in the shape of the personally absent (but socially imposing) omni-present and punitive patriarchy. Figure 2. Womb Tongues. 1997. Acrylic on canvas.‘Germination’ (Figure 3) depicts an umbilical again, but this time as emerging from a seething underworld and is present in TWA (174) this way, “a colony of night crawlers that writhe and slither on the canvas, moving as one, dozens of them as thin as a finger, as long as a dream”. The rhizomic nature of this painting (and Figure 4), becomes a heaving horde of psychosomatic and psychopathological influences and experiences, a multitude of closely packed, intense, and dendridic compulsions and symptoms, a mass of interconnected (and by nature of the silence and lie) subterranean knowledges that force the germination of a ‘ghost baby/child/adult’ indicated by the pale and ashen seedling that emerges above ground. The umbilical is ghosted, pale and devoid of life. It is in the air now, reaching up, as if in germination to a psychological photosynthesis. There is the knot and swarm within the unconscious; something has, in true alien fashion, been incubated and is now emerging. In some ways, these paintings are hardly cryptic.Figure 3. Germination.1993. Acrylic on canvas.In Figure 4 ‘The Birthing Tree’, the overt symbolism reaches ‘clairvoyant status’. This could be read as the family ‘tree’ with its four faces screaming out of the ‘branches’. Do these represent the four babies relinquished by our mother (the larger of these ‘beings’ as myself, giving birth to the illegitimate, silenced, and abject self)? Are we all depicted in anguish and as wraithlike, grotesquely simplified into pure affect? This illegitimate self is painted as gestating a ‘blue’ baby, near full-term in a meld of tree and ‘self’, a blue umbilical cord, again, devoid of blood, ghosted, lifeless and yet still living, once again suffocated by the representation of the umbilical in the ‘bowels’ of the self, the abject part of the body, where refuse is stored and eliminated: The duodenum of the damned. The Devil may be seen as Christopher Bollas’s “shadow of the object”, or the Jungian archetypal shadow, not simply a Judeo-Christian fear-based spectre and curmudgeon, but a site of unprocessed and, therefore, feared psychological material, material that must be brought to consciousness and integrated. Perhaps the Devil also is the antithesis to ‘God’ as mother. The hell of ‘not mother’, no mother, not the right mother, the reluctant adoptive mother – the Devil as icon for the rich underbelly of the psyche and apophatic to the adopted/artificial/socially scripted self.Figure 4. The Birthing Tree. 1995. Acrylic on canvas.These paintings ache with the trauma of my relinquishment and LDA experience. They ache with my body’s truth, where the cellular and psychological, flesh and blood and feeling, leak from my wounds in unspeakable confluence (the two genital lips as the site of relinquishment, my speaking lips that have been sealed through non-disclosure and shame, the psychological trauma as Verrier’s ‘primal wound’) just as I leaked from my mother (and society) at birth, as blood and muck, and ooze and pus and death (Grosz 195) only to be quickly and silently mopped up and cleansed through adoption and life-long secrecy. Where I, as translator, fluent in both silence and signs, disclose the baby’s trauma, asking for legitimacy. My experience as a LDA sets up an interesting experiment, one that allows an examination of the pre-verbal/pre-disclosure body as a fleshed and breathing Rosetta Stone, as an interface between the language of the body and of the verbalised, painted, and written text. As a constructed body, written upon and invented legally, socially, and psychologically, I am, in Hélène Cixous’s (“To Live the Orange” 83) words, “un-forgetting”, “un-silencing” and “unearthing” my ‘self’ – I am re-writing, re-inventing and, under public scrutiny, legitimising my ‘self’. I am a site of inquiry, discovery, extrapolation, and becoming (Metta 492; Poulus 475) and, as Grosz (vii) suggests, a body with “all the explanatory power” of the mind. I am, as I embroider myself and my LDA experience into literary and critical texts, authoring myself into existence, referencing with particular relevance Peter Carnochan’s (361) suggestion that “analysis...acts as midwife to the birth of being”. I am, as I swim forever amorphous, invisible, and unspoken in my mother’s womb, fashioning a shore, landscaping my mind against the constant wet, my chronic liminality (Rambo 629) providing social landfall for other LDAs and silenced minorities. As Catherine Lynch (3) writes regarding LDAs, “Through the creation of text and theory I can formulate an intimate space for a family of adoptive subjects I might never know via our participation in a new discourse in Australian academia.” I participate through my creative, self-reflexive, process fuelled (Durey 22), practice-led enquiry. I use the intimacy (and also universality and multiplicity) and illegitimacy of my body as an alterative text, as a site of academic and creative augmentation in the understanding of LDA issues. The relinquished and silenced baby and LDA adult needs a voice, a ‘body’, and a ‘tender’ place in the consciousness of society, as Helen Riley (“Confronting the Conspiracy of Silence” 11) suggests, “voice, validation, and vindication”. Judith Herman (3) argues that, “Survivors challenge us to reconnect fragments, to reconstruct history, to make meaning of their present symptoms in the light of past events”. I seek to use the example of my experience – as Judith Durey (31) suggests, in “support of evocative, creative modes of representation as valid forms of research in their own right” – to unfurl the whole, to give impetus and precedence for other researchers into adoption and advocate for future babies who may be bought, sold, arranged, and/or created by various means. The recent controversy over Gammy, the baby boy born with Down Syndrome in Thailand, highlights the urgent and moral need for legislation with regard to surrogacy (see Kajsa Ekis Ekman’s Being and Being Bought: Prostitution, Surrogacy and the Split Self for a comprehensive examination of surrogacy issues). Indeed, Catherine Lynch in her paper Doubting Adoption Legislation links the experiences of LDAs and the children of born of surrogacy, most effectively arguing that, “if the fate that closed record adoptees suffered was a misplaced solution to the question of what to do with children already conceived how can you justify the deliberate conception of a child with the intention even before its creation of cruelly removing that child from their mother?” (6). Cixous (xxii) confesses, “All I want is to illustrate, depict fragments, events of human life and death...each unique and yet at the same time exchangeable. Not the law, the exception”. I, too, am a fragment, an illustration (a painting), and, as every individual always is – paradoxically – a communal and, therefore, deeply recognisable and generally applicable minority and exception. In my illegitimacy, I am some kind of evidence. Evidence of cellular memory. Evidence of embodiment. Evidence that silenced illegitimacies will manifest in symptom and non-verbal narratives, that they will ooze out and await translation, verification, and witness. This paper is offered with reverence and with feminist intention, as a revenant mouthpiece for other LDAs, babies born of surrogacy, and donor assisted offspring (and, indeed, any) who are marginalised, silenced, and obscured. It is also intended to promote discussion in the psychological and psychoanalytic fields and, as Helen Riley (202-207) advocates regarding late discovery offspring, more research within the social sciences and the bio-medical field that may encourage legislators to better understand what the ‘best interests of the child’ are in terms of late discovery of origins and the complexity of adoption/conception practices available today. As I write now (and always) the umbilical from my paintings curve and writhe across my soul, twist and morph into the swollen and throbbing organ of tongues, my throat aching to utter, my hands ready to craft latent affect into language in translation of, and in obedience to, my body’s knowledges. It is the art of mute witness that reverses genesis, that keeps the umbilical fat and supple and full of blood, and allows my conscious conception and creation. 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IllegitimacyBack in 1987, Gregory Bateson argued that:Kurt Vonnegut gives us wary advice – that we should be careful what we pretend because we become what we pretend. And something like that, some sort of self-fulfilment, occurs in all organisations and human cultures. What people presume to be ‘human’ is what they will build in as premises of their social arrangements, and what they build in is sure to be learned, is sure to become a part of the character of those who participate. (178)The human capacity to marginalise and discriminate against others on the basis of innate and constructed characteristics is evident from the long history of discrimination against people whose existence is ‘illegitimate’, defined as being outside the law. What is inside or outside the law depends upon the context under consideration. For example, in societies such as ancient Greece and the antebellum United States, where slavery was legal, people who were constructed as ‘slaves’ could legitimately be treated very differently from ‘citizens’: free people who benefit from a range of human rights (Northup). The discernment of what is legitimate from that which is illegitimate is thus implicated within the law but extends into the wider experience of community life and is evident within the civil structures through which society is organised and regulated.The division between the legitimate and illegitimate is an arbitrary one, susceptible to changing circumstances. Within recent memory a romantic/sexual relationship between two people of the same sex was constructed as illegitimate and actively persecuted. This was particularly the case for same-sex attracted men, since the societies regulating these relationships generally permitted women a wider repertoire of emotional response than men were allowed. Even when lesbian and gay relationships were legalised, they were constructed as less legitimate in the sense that they often had different rules around the age of consent for homosexual and heterosexual couples. In Australia, the refusal to allow same sex couples to marry perpetuates ways in which these relationships are constructed as illegitimate – beyond the remit of the legislation concerning marriage.The archetypal incidence of illegitimacy has historically referred to people born out of wedlock. The circumstances of birth, for example whether a person was born as a result of a legally-sanctioned marital relationship or not, could have ramifications throughout an individual’s life. Stories abound (for example, Cookson) of the implications of being illegitimate. In some social stings, such as Catherine Cookson’s north-eastern England at the turn of the twentieth century, illegitimate children were often shunned. Parents frequently refused permission for their (legitimate) children to play with illegitimate classmates, as if these children born out of wedlock embodied a contaminating variety of evil. Illegitimate children were treated differently in the law in matters of inheritance, for example, and may still be. They frequently lived in fear of needing to show a birth certificate to gain a passport, for example, or to marry. Sometimes, it was at this point in adult life, that a person first discovered their illegitimacy, changing their entire understanding of their family and their place in the world. It might be possible to argue that the emphasis upon the legitimacy of a birth has lessened in proportion to an acceptance of genetic markers as an indicator of biological paternity, but that is not the endeavour here.Given the arbitrariness and mutability of the division between legitimacy and illegitimacy as a constructed boundary, it is policed by social and legal sanctions. Boundaries, such as the differentiation between the raw and the cooked (Lévi-Strauss), or S/Z (Barthes), or purity and danger (Douglas), serve important cultural functions and also convey critical information about the societies that enforce them. Categories of person, place or thing which are closest to boundaries between the legitimate and the illegitimate can prompt existential anxiety since the capacity to discern between these categories is most challenged at the margins. The legal shenanigans which can result speak volumes for which aspects of life have the potential to unsettle a culture. One example of this which is writ large in the recent history of Australia is our treatment of refugees and asylum seekers and the impact of this upon Australia’s multicultural project.Foreshadowing the sexual connotations of the illegitimate, one of us has written elsewhere (Green, ‘Bordering on the Inconceivable’) about the inconceivability of the Howard administration’s ‘Pacific solution’. This used legal devices to rewrite Australia’s borders to limit access to the rights accruing to refugees upon landing in a safe haven entitling them to seek asylum. Internationally condemned as an illegitimate construction of an artificial ‘migration zone’, this policy has been revisited and made more brutal under the Abbot regime with at least two people – Reza Barati and Hamid Khazaei – dying in the past year in what is supposed to be a place of safety provided by Australian authorities under their legal obligations to those fleeing from persecution. Crock points out, echoing the discourse of illegitimacy, that it is and always has been inappropriate to label “undocumented asylum seekers” as “‘illegal’” because: “until such people cross the border onto Australian territory, the language of illegality is nonsense. People who have no visas to enter Australia can hardly be ‘illegals’ until they enter Australia” (77). For Australians who identify in some ways – religion, culture, fellow feeling – with the detainees incarcerated on Nauru and Manus Island, it is hard to ignore the disparity between the government’s treatment of visa overstayers and “illegals” who arrive by boat (Wilson). It is a comparatively short step to construct this disparity as reflecting upon the legitimacy within Australia of communities who share salient characteristics with detained asylum seekers: “The overwhelmingly negative discourse which links asylum seekers, Islam and terrorism” (McKay, Thomas & Kneebone, 129). Some communities feel themselves constructed in the public and political spheres as less legitimately Australian than others. This is particularly true of communities where members can be identified via markers of visible difference, including indicators of ethnic, cultural and religious identities: “a group who [some 585 respondent Australians …] perceived would maintain their own languages, customs and traditions […] this cultural diversity posed an extreme threat to Australian national identity” (McKay, Thomas & Kneebone, 129). Where a community shares salient characteristics such as ethnicity or religion with many detained asylum seekers they can become fearful of the discourses around keeping borders strong and protecting Australia from illegitimate entrants. MethodologyThe qualitative fieldwork upon which this paper is based took place some 6-8 years ago (2006-2008), but the project remains one of the most recent and extensive studies of its kind. There are no grounds for believing that any of the findings are less valid than previously. On the contrary, if political actions are constructed as a proxy for mainstream public consent, opinions have become more polarised and have hardened. Ten focus groups were held involving 86 participants with a variety of backgrounds including differences in age, gender, religious observance, religious identification and ethnicity. Four focus groups involved solely Muslim participants; six drew from the wider Australian community. The aim was to examine the response of different communities to mainstream Australian media representations of Islam, Muslims, and terrorism. Research questions included: “Are there differences in the ways in which Australian Muslims respond to messages about ‘fear’ and ‘terror’ compared with broader community Australians’ responses to the same messages?” and “How do Australian Muslims construct the perceptions and attitudes of the broader Australian community based on the messages that circulate in the media?” Recent examples of kinds of messages investigated include media coverage of Islamic State’s (ISIS’s) activities (Karam & Salama), and the fear-provoking coverage around the possible recruitment of Australians to join the fighting in Syria and Iraq (Cox). The ten focus groups were augmented by 60 interviews, 30 with respondents who identified as Muslim (15 males, 15 female) and 30 respondents from the broader community (same gender divisions). Finally, a market research company was commissioned to conduct a ‘fear survey’, based on an established ‘fear of rape’ inventory (Aly and Balnaves), delivered by telephone to a random sample of 750 over-18 y.o. Australians in which Muslims formed a deliberative sub-group, to ensure they were over-sampled and constituted at least 150 respondents. The face-to-face surveys and focus groups were conducted by co-author, Dr Anne Aly. General FindingsMuslim respondents indicate a heightened intensity of reaction to media messages around fear and terror. In addition to a generalised fear of the potential impact of terrorism upon Australian society and culture, Muslim respondents experienced a specific fear that any terrorist-related media coverage might trigger hostility towards Muslim Australian communities and their own family members. According to the ‘fear survey’ scale, Muslim Australians at the time of the research experienced approximately twice the fear level of mainstream Australian respondents. Broader Australian community Australian Muslim communityFear of a terrorist attackFear of a terrorist attack combines with the fear of a community backlashSpecific victims: dead, injured, bereavedCommunity is full of general victims in addition to any specific victimsShort-term; intense impactsProtracted, diffuse impactsSociety-wide sympathy and support for specific victims and all those involved in dealing with the trauma and aftermathSociety-wide suspicion and a marginalisation of those affected by the backlashVictims of a terrorist attack are embraced by broader communityVictims of backlash experience hostility from the broader communityFour main fears were identified by Australian Muslims as a component of the fear of terrorism:Fear of physical harm. In addition to the fear of actual terrorist acts, Australian Muslims fear backlash reprisals such as those experienced after such events as 9/11, the Bali bombings, and attacks upon public transport passengers in Spain and the UK. These and similar events were constructed as precipitating increased aggression against identifiable Australian Muslims, along with shunning of Muslims and avoidance of their company.The construction of politically-motivated fear. Although fear is an understandable response to concerns around terrorism, many respondents perceived fears as being deliberately exacerbated for political motives. Such strategies as “Be alert, not alarmed” (Bassio), labelling asylum seekers as potential terrorists, and talk about home-grown terrorists, are among the kinds of fears which were identified as politically motivated. The political motivation behind such actions might include presenting a particular party as strong, resolute and effective. Some Muslim Australians construct such approaches as indicating that their government is more interested in political advantage than social harmony.Fear of losing civil liberties. As well as sharing the alarm of the broader Australian community at the dozens of legislative changes banning people, organisations and materials, and increasing surveillance and security checks, Muslim Australians fear for the human rights implications across their community, up to and including the lives of their young people. This fear is heightened when community members may look visibly different from the mainstream. Examples of the events fuelling such fears include the London police killing of Jean Charles de Menezes, a Brazilian Catholic working as an electrician in the UK and shot in the month following the 7/7 attacks on the London Underground system (Pugliese). In Australia, the case of Mohamed Hannef indicated that innocent people could easily be unjustly accused and wrongly targeted, and even when this was evident the political agenda made it almost impossible for authorities to admit their error (Rix).Feeling insecure. Australian Muslims argue that personal insecurity has become “the new normal” (Massumi), disproportionately affecting Muslim communities in both physical and psychological ways. Physical insecurity is triggered by the routine avoidance, shunning and animosity experienced by many community members in public places. Psychological insecurity includes fear for the safety of younger members of the community compounded by concern that young people may become ‘radicalised’ as a result of the discrimination they experience. Australian Muslims fear the backlash following any possible terrorist attack on Australian soil and describe the possible impact as ‘unimaginable’ (Aly and Green, ‘Moderate Islam’).In addition to this range of fears expressed by Australian Muslims and constructed in response to wider societal reactions to increased concerns over radical Islam and the threat of terrorist activity, an analysis of respondents’ statements indicate that Muslim Australians construct the broader community as exhibiting:Fear of religious conviction (without recognising the role of their own secular/religious convictions underpinning this fear);Fear of extremism (expressed in various extreme ways);Fear of powerlessness (responded to by disempowering others); andFear of political action overseas having political effects at home (without acknowledging that it is the broader community’s response to such overseas events, such as 9/11 [Green ‘Did the world really change?’], which has also had impacts at home).These constructions, extrapolations and understandings by Australian Muslims of the fears of the broader community underpinning the responses to the threat of terror have been addressed elsewhere (Green and Aly). Legitimate Australian MuslimsOne frustration identified by many Muslim respondents centres upon a perceived ‘acceptable’ way to be an Australian Muslim. Arguing that the broader community construct Muslims as a homogenous group defined by their religious affiliation, these interviewees felt that the many differences within and between the twenty-plus national, linguistic, ethnic, cultural and faith-based groupings that constitute WA’s Muslim population were being ignored. Being treated as a homogenised group on a basis of faith appears to have the effect of putting that religious identity under pressure, paradoxically strengthening and reinforcing it (Aly, ‘Australian Muslim Responses to the Discourse on Terrorism’). The appeal to Australian Muslims to embrace membership in a secular society and treat religion as a private matter also led some respondents to suggest they were expected to deny their own view of their faith, in which they express their religious identity across their social spheres and in public and private contexts. Such expression is common in observant Judaism, Hinduism and some forms of Christianity, as well as in some expressions of Islam (Aly and Green, ‘Less than equal’). Massumi argues that even the ways in which some Muslims dress, indicating faith-based behaviour, can lead to what he terms as ‘affective modulation’ (Massumi), repeating and amplifying the fear affect as a result of experiencing the wider community’s fear response to such triggers as water bottles (from airport travel) and backpacks, on the basis of perceived physical difference and a supposed identification with Muslim communities, regardless of the situation. Such respondents constructed this (implied) injunction to suppress their religious and cultural affiliation as akin to constructing the expression of their identity as illegitimate and somehow shameful. Parallels can be drawn with previous social responses to a person born out of wedlock, and to people in same-sex relationships: a ‘don’t ask, don’t tell’ kind of denial.Australian Muslims who see their faith as denied or marginalised may respond by identifying more strongly with other Muslims in their community, since the community-based context is one in which they feel welcomed and understood. The faith-based community also allows and encourages a wider repertoire of acceptable beliefs and actions entailed in the performance of ‘being Muslim’. Hand in hand with a perception of being required to express their religious identity in ways that were acceptable to the majority community, these respondents provided a range of examples of self-protective behaviours to defend themselves and others from the impacts of perceived marginalisation. Such behaviours included: changing their surnames to deflect discrimination based solely on a name (Aly and Green, ‘Fear, Anxiety and the State of Terror’); keeping their opinions private, even when they were in line with those being expressed by the majority community (Aly and Green, ‘Moderate Islam’); the identification of ‘less safe’ and ‘safe’ activities and areas; concerns about visibly different young men in the Muslim community and discussions with them about their public behaviour and demeanour; and women who chose not to leave their homes for fear of being targeted in public places (all discussed in Aly, ‘Australian Muslim Responses to the Discourse on Terrorism’). Many of these behaviours, including changing surnames, restricting socialisation to people who know a person well, and the identification of safe and less safe activities in relation to the risk of self-revelation, were common strategies used by people who were stigmatised in previous times as a result of their illegitimacy.ConclusionConstructions of the legitimate and illegitimate provide one means through which we can investigate complex negotiations around Australianness and citizenship, thrown into sharp relief by the Australian government’s treatment of asylum seekers, also deemed “illegals”. Because they arrive in Australia (or, as the government would prefer, on Australia’s doorstep) by illegitimate channels these would-be citizens are treated very differently from people who arrive at an airport and overstay their visa. The impetus to exclude aspects of geographical Australia from the migration zone, and to house asylum seekers offshore, reveals an anxiety about borders which physically reflects the anxiety of western nations in the post-9/11 world. Asylum seekers who arrive by boat have rarely had safe opportunity to secure passports or visas, or to purchase tickets from commercial airlines or shipping companies. They represent those ethnicities and cultures which are currently in turmoil: a turmoil frequently exacerbated by western intervention, variously constructed as an il/legitimate expression of western power and interests.What this paper has demonstrated is that the boundary between Australia and the rest, the legitimate and the illegitimate, is failing in its aim of creating a stronger Australia. The means through which this project is pursued is making visible a range of motivations and concerns which are variously interpreted depending upon the position of the interpreter. The United Nations, for example, has expressed strong concern over Australia’s reneging upon its treaty obligations to refugees (Gordon). Less vocal, and more fearful, are those communities within Australia which identify as community members with the excluded illegals. The Australian government’s treatment of detainees on Manus Island and Nauru, who generally exhibit markers of visible difference as a result of ethnicity or culture, is one aspect of a raft of government policies which serve to make some people feel that their Australianness is somehow less legitimate than that of the broader community. AcknowledgementsThis paper is based on the findings of an Australian Research Council Discovery Project (DP0559707), 2005-7, “Australian responses to the images and discourses of terrorism and the other: establishing a metric of fear”, awarded to Professors Lelia Green and Mark Balnaves. The research involved 10 focus groups and 60 individual in-depth interviews and a telephone ‘fear of terrorism’ survey. The authors wish to acknowledge the participation and contributions of WA community members and wider Australian respondents to the telephone survey. ReferencesAly, Anne. “Australian Muslim Responses to the Discourse on Terrorism in the Australian Popular Media.” Australian Journal of Social Issues 42.1 (2007): 27-40.Aly, Anne, and Lelia Green. “Fear, Anxiety and the State of Terror.” Studies in Conflict and Terrorism 33.3 (Feb 2010): 268-81.Aly, Anne, and Lelia Green. “Less than Equal: Secularism, Religious Pluralism and Privilege.” M/C Journal 11.2 (2008). 15 Oct. 2009 ‹http://journal.media-culture.org.au/index.php/mcjournal/article/view/32›.Aly, Anne, and Lelia Green. “‘Moderate Islam’: Defining the Good Citizen”. 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This article makes a case for the everyday while on tour and argues that the ability to continue with everyday routines and social relationships, while at the same time moving through and staying in liminal or atypical zones of tourist locales, is a key part of some kinds of tourist experience. Based on ethnographic field research with grey nomads (retirees who take extended tours of Australia in caravans and motorhomes) everyday life while on tour is examined, specifically the overlap and intersection between the out-of-the-ordinary “tourist zone” and the ordinariness of the “everyday zone.” The “everyday zone” and “tourist zone” can be readily differentiated by their obvious geospatial boundaries (being at home or being away on holiday). More specifically, the “everyday zone” refers to the routines of quotidian life, or the mundane practices which make up our daily, at-home lives. These practices are closely connected with the domestic realm and include consumption practices (clothing, cooking, mass media) and everyday social interactions. The “tourist zone” is similarly concerned with consumption. In this zone, however, tourists are seen to consume places; the culture, landscape, and peoples of exotic or out-of-the-ordinary tourist locales. Needless to say this consumption of place also includes the consumption of services and objects available in the tourist destinations (Urry, “The Consuming of Place” 220). The notion of tourists being away from home has often been contrasted with constructions of home—with the dull routines of everyday life—by social scientists and tourist marketers alike in an effort to illuminate the difference between being “away” and being at “home.” Scott McCabe and Elizabeth Stokoe suggest that peoples’ notion of “home” takes into account the meaning of being away (602). That is to say that when people are away from home, as tourists for example, they often compare and contrast this with the fundamental aspects of living at home. Others, however, argue that with the widespread use of mobile communication technologies, the distinction between the notion of being at “home” and being “away” becomes less clear (White and White 91). In this sense, the notion of home or the everyday is viewed with an eye towards social relationships, rather than any specific geographical location (Jamal and Hill 77–107; Massey 59–69; Urry, “The Tourist Gaze” 2–14; White and White 88–104). It can be argued, therefore, that tourism entails a fusion of the routines and relationships associated with the everyday, as well as the liminal or atypical world of difference. This article is based on semi-structured interviews with 40 grey nomads, as well as four months of ethnographic fieldwork carried out in rural and remote Australia—in Western Australia, the Northern Territory, and South Australia. Grey nomads have been part of Australian senior culture for at least four decades. They are a relatively heterogeneous group of tourists encompassing a range of socio-economic backgrounds, preferred activities, health status, and favoured destinations (Davies et al. 40–1; Economic Development Committee 4; Holloway 117–47), as well age cohorts—including the frugal generation (1910–1932), the silent generation (1931–1946), and the baby boomer generation (1946–65). Grey nomads usually tour as spousal couples (Tourism Research Australia 26; Onyx and Leonard 387). Some of these couples live solely on government pensions while others are obviously well-resourced—touring in luxury motorhomes costing well over half a million dollars. Some prefer to bush camp in national parks and other isolated locations, and some choose to stay long term in caravan parks socialising with other grey nomads and the local community. All grey nomads, nonetheless, maintain a particularly close link with the everyday while touring. Mobile communication technologies anchor grey nomads (and other tourists) to the everyday—allowing for ready contact with existing family and friends while on tour. Grey nomads’ mobile dwellings, their caravans and motorhomes, integrate familiar domestic spaces with a touring life. The interior and exterior spaces of these mobile dwellings allow for easy enactment of everyday, domestic routines and the privatised world of adult spousal relationships. This peripatetic form of dwelling, where the dwelling itself accommodates both travel and an everyday domestic life further blurs the distinctions between the “everyday zone” and the “tourist zone”. In this sense grey nomads carry out a lifestyle that is both anchored and mobile; anchored in the everyday domestic life while at the same time being nomadic or geographically unstable. This blurring of the boundaries between the “everyday zone” and “tourist zone” is attractive to senior tourists, offering them a relatively safe and comfortable incursion into tourist locales, where established routines and patterns of everyday life can be maintained. Other homes-away-from-homes such as serviced apartments, holiday homes and house swaps also offer greater connection to the everyday, but are geographically anchored to specific tourism spaces. The caravan or motorhome allows this at-home connection for the peripatetic tourist offsets the relative rigours of outback touring in remote and rural Australia. Everyday Social Relationships in the “Tourist Zone” When tourists go away from home, they are usually thought of as being away from both place (home) and relationships (family and friends). Nowadays, however, being away from home does not necessarily mean being away from family and friends. This is because the ease and speed of today’s telecommunication technologies allows for instantaneous contact with family and friends back home—or the virtual co-presence of family and friends while being away on tour. In the past, those friends and relations who were geographically isolated from each other still enjoyed social contact via letters and telegrams. Such contacts, however, occurred less frequently and message delivery took time. Long distance telephone calls were also costly and therefore used sparingly. These days, telecommunication technologies such as mobile phones and the Internet, as well as the lower cost of landline phone calls, mean that everyday social contact does not need to be put on hold. Keeping in contact is now a comparatively fast, inexpensive, and effortless activity and socialising with distant friends and relatives is now a routine activity (Larsen 24). All grey nomads travel with a mobile phone device, either a digital mobile, Next G or satellite phone (Obst, Brayley and King 8). These phones are used to routinely keep in contact with family and friends, bringing with them everyday familial relationships while on tour. “We ring the girls. We’ve got two daughters. We ring them once a week, although if something happens Debbie [daughter] will ring us” (Teresa). Grey nomads also take advantage of special deals or free minutes when they scheduled weekly calls to family or friends. “I mainly [use] mobile, then I ring, because I’ve got that hour, free hour” (Helen). E-mail is also a favoured way of keeping in contact with family and friends for some grey nomads. This is because the asynchronicity of e-mail interaction is very convenient as they can choose the times when they pick up and send messages. “Oh, thank goodness for the e-mail” (Pat). Maintaining social contact with family and friends at a distance is not necessarily as straightforward as when grey nomads and other tourists are at home. According to discussants in this study and the Regional Telecommunications Independent Review Committee, mobile phone coverage within Australia is still rather patchy when outside major metropolitan areas. Consequently, the everyday task of kin keeping via the phone can be somewhat intermittent, especially for those grey nomads who spend a great deal of time outside major towns in rural and remote Australia. “You can never get much [reception] but [...] they can just ring the mobile and just leave a message and we will get that message [later]” (Rena). Similarly, using the Internet to e-mail family and friends and catch up with online banking can only be carried out when passing through larger towns. “I do it [using the Internet] like every major town we went through. I’d stop and do a set of e-mails and I used to do my banking” (Maureen). The intermittent phone coverage in remote and rural Australia was not always viewed as an inconvenience by discussants in this study. This is because continuing engagement with family and friends while on tour may leave little respite from the ongoing obligations or any difficulties associated with family and friends back home, and encroach on the leisure and relaxation associated with grey nomad touring. “I don’t want the phone to ring […] That’s one thing I can do without, the phone ringing, especially at 4:00 in the morning” (Rena). In this way, too much co-presence, in the form of mobile phone calls from family and friends, can be just as much a nuisance when away from home as when at home—and impinge on the feeling of “being away from it all.” Naomi White and Peter White also suggest that “being simultaneously home and away is not always experienced in a positive light” (98) and at times, continued contact (via the phone) with friends and family while touring is not satisfying or enjoyable because these calls reiterate the “dynamics evident in those that are [usually] geographically proximate” (100). Thus, while mobile communication technologies are convenient tools for grey nomads and other tourists which blur the boundaries between the “everyday zone” and “tourist zones” in useful and pleasurable ways, their overuse may also encroach on tourists’ away time, thus interfering with their sense of solitude and quiescence when touring in remote or rural Australia. The “Everyday Zone” of the Caravan or Motorhome Being a tourist involves “everyday practices, ordinary places and significant others, such as family members and friends, but co-residing and at-a-distance” (Larsen 26). While tourism involves some sense of liminality, in reality, it is interspersed with the actuality of the everyday routines and sociabilities enacted while touring. Tim Edensor notes that; Rather than transcending the mundane, most forms of tourism are fashioned by culturally coded escape attempts. Moreover, although suffused with notions of escape from normativity, tourists carry quotidian habits and responses with them: they are part of the baggage. (61) Grey nomads go further than this by bringing on tour with them a domestic space in which everyday routines and sociabilities are sustained. Travelling in this manner “makes possible, and probably encourages, greater continuity with everyday routine than many other kinds of holiday making” (Southerton et al. 6). To be able to sleep in your own bed with your own pillow and linen, or perhaps travel with your dogs, makes caravanning and motorhoming an attractive touring option for many people. Thus, the use of caravans or motorhomes when travelling brings with it a great deal of mobile domesticity while on tour. The caravan or motorhome is furnished with most of the essentially-domestic objects and technologies to enable grey nomads to sleep, eat, relax, and be entertained in a manner similar to that which they enjoy in the family home, albeit within smaller dimensions. Lorna: We have shower, toilet. We had microwave, stereo. We have air conditioning and heating.Eric: Yeah, reverse cycle air conditioning.Lorna: Reverse cycle. What else do we have?Eric: Hot water service. Gas or 240 volt. 12 volt converter in that, which is real good, it runs your lights, runs everything like that. You just hook it into the main power and it converts it to 12 volt. Roll out awning plus the full annex.Lorna: Full annex. What else do we have? There’s a good size stove in it. The size of caravans and motorhomes means that many domestic tasks often take less time or are simplified. Cleaning the van takes a lot less time and cooking often becomes simplified, due to lack of bench and storage space. Women in particular like this aspect of grey nomad travel. “It is great. Absolutely. You don’t have toilets to clean, you don’t have bathrooms to clean. Cooking your meals are easier because everything is all […] Yeah. It’s more casual” (Sonya). This touring lifestyle also introduces new domestic routines, such as emptying chemical toilets, filling water tanks, towing and parking the van and refilling gas tanks, for example. Nonetheless grey nomads, spend significantly less time on these domestic tasks when they are touring. In this sense, the caravan or motorhome brings with it the comforts and familiarity of home, while at the same time minimising the routine chores involved in domestic life. With the core accoutrements of everyday life available, everyday activities such as doing the dishes, watching television, preparing and eating a meal—as well as individual hobbies and pastimes—weave themselves into a daily life that is simultaneously home and away. This daily life, at home in the caravan or motorhome, brings with it possibilities of a domestic routinised lifestyle—one that provides welcome comfort and familiarity when travelling and a retreat from the demands of sightseeing. On the farm I used to make jam and cakes, so I do it again [in the caravan]. I make jam, I made marmalade a couple of weeks ago. We’d often stay home [in the caravan], I’d just clean or do a bit of painting. (Jenny) Touring in a caravan or motorhome allows for some sense of predictability: that you own and control the private spaces of your own mobile dwelling, and can readily carry out everyday domestic routines and sociabilities. “We go for a long walk. We come back and we see friends and we stop and have a coffee with them, and then you come home in the caravan at 2.30 and you can still have lunch” (Yvonne). Touring in a caravan or motorhome also frees grey nomads from dependence on prearranged tourist experiences such as organised tours or hotel meal times where much of the tourist experience can be regimented. We always went in hotels and you always had to dress up, and you had to eat before a certain time, and you had your breakfast before a certain time. And after 2.30 you can’t have lunch anymore and sometimes we have lunch at 2 o’clock. I like the caravan park [better]. (Donald) Despite the caravan or motorhome having close links with everyday life and the domestic realm, its ready mobility offers a greater sense of autonomy while touring: that you are unfettered, not bound to any specific place or timetable, and can move on at whim. Grey nomads often cross paths with other tourists dependent on guided bus tours. “They go in [to Kakadu] on a bus trip. All they do is go in on the main road, they’re in there for the day and there’re back. That’s absolutely ridiculous” (Vance). This autonomy, or freedom to structure their own tourist experiences, allows grey nomads the opportunity to travel at a leisurely pace. Even those grey nomads who travel to the same northern destination every year take their time and enjoy other tourist locations along the way. We take our time. This time, last time, we did three weeks before we got in [to] Broome. We spent a lot [of time] in Karratha but also in Geraldton. And when we came back, in Kalbarri, [we had] a week in Kalbarri. But it’s nice going up, you know. You go all through the coast, along the coast. (John) Caravan or motorhome use, therefore, provides for a routinised everyday life while at the same time allowing a level of autonomy not evident in other forms of tourism—which rely more heavily on pre-booking accommodation and transport options. These contradictory aspects of grey nomad travel, an everyday life of living in a caravan or motorhome coupled with freedom to move on in an independent manner, melds the “everyday zone” and the “tourist zone” in a manner appealing to many grey nomads. Conclusion Theories of tourism tend to pay little attention to the aspects of tourism that involve recurrent activities and an ongoing connectedness with everyday life. Tourism is often defined: by contrasting it to home geographies and everydayness: tourism is what they are not. [...] The main focus in such research is on the extraordinary, on places elsewhere. Tourism is an escape from home, a quest for more desirable and fulfilling places. (Larsen 21) Nonetheless, tourism involves everyday routines, everyday spaces and an everyday social life. Grey nomads find that mobile phones and the Internet make possible the virtual co-presence of family and friends allowing everyday relationships to continue while touring. Nonetheless, the pleasure of ongoing contact with distant family and friends while touring may at times encroach on the quietude or solitude grey nomads experienced when touring remote and rural Australia. In addition to this, grey nomads’ caravans and motorhomes are equipped with the many comforts and domestic technologies of home, making for the continuance of everyday domiciliary life while on tour, further obfuscating the boundaries between the “tourist zone” and the “everyday zone.” In this sense grey nomads lead a lifestyle that is both anchored and mobile. This anchoring involves dwelling in everyday spaces, carrying out everyday domestic and social routines, as well as maintaining contact with friends and family via mobile communication technologies. This anchoring allows for some sense of predictability: that you own and control the private spaces of your own mobile dwelling, and can readily carry out everyday domestic routines and sociabilities. Conversely, the ready mobility of the caravan or motorhome offers a sense of autonomy: that you are unfettered, not bound to any specific place and can move on at whim. This peripatetic form of dwelling, where the dwelling itself is the catalyst for both travel and an everyday domestic life, is an under researched area. Mobile dwellings such as caravans, motorhomes, and yachts, constitute dwellings that are anchored in the everyday yet unfixed to any one locale. References Davies, Amanda, Matthew Tonts, and Julie Cammell. Coastal Camping in the Rangelands: Emerging Opportunities for Natural Resource Management. Perth: Rangelands WA, 2009. 24 Sep. 2011 ‹http://www.rangelandswa.com.au/pages/178/publications›. Economic Development Committee. Inquiry into Developing Queensland’s Rural and Regional Communities through Grey Nomad Tourism. Brisbane: Queensland Parliament, 2011. 23 Sep. 2011 ‹http://www.parliament.qld.gov.au/Documents/TableOffice/TabledPapers/2011/5311T3954.pdf›. Edensor, Tim. “Performing Tourism, Staging Tourism: (Re)Producing Tourist Space and Practice.” Tourist Studies 1 (2001): 59–81. Holloway, Donell. Grey Nomads: Retirement, Leisure and Travel in the Australian Context. PhD diss. Edith Cowan University: Perth, 2010. Jamal, Tanzin, and Steve Hill. “The Home and the World: (Post) Touristic Spaces of (in) Authenticity.” The Tourist as a Metaphor of The Social World. Ed. Graham Dann. Wallingford: CAB International, 2002. 77–107. Larsen, Jonas. “De-Exoticizing Tourist Travel: Everyday Life and Sociality on the Move.” Leisure Studies 27 (2008): 21–34. Massey, Doreen. “Power-Geometry and a Progressive Sense of Place.” Mapping the Futures: Local Cultures, Global Change. Eds. Jon Bird et al. London: Routeledge, 1993. 59–69. McCabe, Scott, and Elizabeth Stokoe. “Place and Identity in Tourists’ Accounts.” Annals of Tourism Research 31 (2004): 601–22. Obst, Patricia L., Nadine Brayley, and Mark J. King. “Grey Nomads: Road Safety Impacts and Risk Management.” 2008 Australasian Road Safety Research, Policing and Education Conference. Adelaide: Engineers Australia, 2008. Onyx, Jenny, and Rosemary Leonard. “The Grey Nomad Phenomenon: Changing the Script of Aging.” The International Journal of Aging and Human Development 64 (2007): 381–98. Regional Telecommunications Independent Review Committee. Regional Telecommunications Review Report: Framework for the Future. Canberra: RTIRC, 2008. Southerton, Dale, Elizabeth Shove, Alan Warde, and Rosemary Dean. “Home from Home? A Research Note on Recreational Caravanning.” Department of Sociology, Lancaster University. 1998. 10 Jan. 2009 ‹http://www.lancs.ac.uk/fass/sociology/papers/southerton-et-al-home-from-home.pdf›. Tourism Research Australia. Understanding the Caravan industry in WA: Grey Nomads—Fast Facts. Perth, Australia: Tourism WA (n.d.). Urry, John. “The Consuming of Place.” Discourse, Communication, and Tourism. Eds. Adam Jaworski and Annette Pritchard. Clevedon: Channel View Publications, 2005. 19–27. ———. The Tourist Gaze. London: Sage, 2002. White, Naomi, and Peter White. “Home and Away: Tourists in a Connected World.” Annals of Tourism Research 34 (2006): 88–104.

BASTARDYAll children born before matrimony, or so long after the death of the husband as to render it impossible that the child could be begotten by him, are bastards.– Cro. Jac. 451William Toone: The Magistrates Manual, 1817 (66)On 4 September 1832, the body of a newborn baby boy was found washed up on the shore at the port town of Fremantle, Western Australia. As the result of an inquest into the child’s suspicious death, a 20-year-old, unmarried woman named Mary Summerland was accused of concealing his birth. In October 2014, 25-year-old Irish backpacker Caroline Quinn faced court in Perth, Western Australia, over claims that she concealed the birth of her stillborn child after giving birth in the remote north west town of Halls Creek during May of the same year. Both women denied the existence of their children, both appear to have given birth to their “illegitimate” babies alone, and both women claimed that they did not know that they had ever been pregnant at all. In addition, both women hid the body of their dead child for several days while the people they lived with or were close to, did not appear to notice that the mother of the child had had a baby. In neither case did any person associated with either woman seek to look for the missing child after it had been born.Despite occurring 182 years apart, the striking similarities between these cases could lead to the assumption that it is almost as if there were a written script of behaviour that would explain the actions of both young women. Close examination of the laws surrounding child murder, infanticide and concealment of birth reveals evidence of similar behaviours being enacted by women as far back as the 1600s (and earlier), and all are shaped in response to the legal frameworks that prosecuted women who gave birth outside of marriage.This article traces the history of child murder law from its formation in England in the 1600s and explores how early moral assumptions concerning unmarried mothers echoed through the lived experiences of women who killed their illegitimate babies in colonial Western Australia, and continue to resonate in the treatment of, and legal response to, women accused of similar crimes in the present day. The Unlicensed ChildThe unlicensed child is a term coined by Swain and Howe to more accurately define the social matrix faced by single women and their children in Australia. The term seeks to emphasise the repressive and controlling religious, legal and social pressures that acted on Australian women who had children outside marriage until the mid-1970s (xxi, 1, 92, 94). For the purposes of this article, I extend Swain and Howe’s term the unlicensed child to coin the term the unlicensed mother. Following on from Swain and Howe’s definition, if the children of unmarried mothers did not have a license to be born, it is essential to acknowledge that their mothers did not have a license to give birth. Women who had children without social and legal sanction gave birth within a society that did not allocate them “permission” to be mothers, something that the corporeality of pregnancy made it impossible for them not to be. Their own bodies—and the bodies of the babies growing inside them—betrayed them. Unlicensed mothers were punished socially, religiously, legally and financially, and their children were considered sinful and inferior to children who had married parents simply because they had been born (Scheper-Hughes 410). This unspoken lack of authorisation to experience the unavoidably innate physicality of pregnancy, birth and motherhood, in turn implies that, until recently unmarried mothers did not have license to be mothers. Two MothersAll that remains of the “case” of Mary Summerland is a file archived at the State Records Office of Western Australia under the title CONS 3472, Item 10: Rex V Mary Summerland. Yet revealed within those sparse documents is a story echoed by the events surrounding Caroline Quinn nearly two hundred years later. In September 1832, Mary Summerland was an unmarried domestic servant living and working in Fremantle when the body of a baby was found lying on a beach very close to the settlement. Western Australia had only been colonized by the British in 1829. The discovery of the body of an infant in such a tiny village (colonial Fremantle had a population of only 436 women and girls out of 1341 non-Aboriginal emigrants) (Gardiner) set in motion an inquest that resulted in Mary Summerland being investigated over the suspicious death of the child.The records suggest that Mary may have given birth, apparently alone, over a week prior to the corpse of the baby being discovered, yet no one in Fremantle, including her employer and her family, appeared to have noticed that Mary might have been pregnant, or that she had given birth to a child. When Mary Summerland was eventually accused of giving birth to the baby, she strongly denied that she had ever been pregnant, and denied being the mother of the child. It is not known how her infant ended up being disposed of in the ocean. It is also not known if Mary was eventually charged with concealment or child murder, but in either scenario, the case against her was dismissed as “no true bill” when she faced her trial. The details publically available on the case of Caroline Quinn are also sparse. Even the sex of her child has not been revealed in any of the media coverage of the event. Yet examination of the limited details available on her charge of “concealment of birth” reveal similarities between her behaviours and those of Mary Summerland.In May 2014 Caroline Quinn had been “travelling with friends in the Kimberly region of Western Australia” (Lee), and, just as Mary did, Caroline claims she “did not realise that she was pregnant” when she went into labour (Independent.ie). She appears, like Mary Summerland, to have given birth alone, and also like Mary, when her child died due to unexplained circumstances she hid the corpse for several days. Also echoing Mary’s story, no person in the sparsely populated Hall’s Creek community (the town has a populace of 1,211) or any friends in Caroline’s circle of acquaintances appears to have noticed her pregnancy, nor did they realise that she had given birth to a baby until the body of the child was discovered hidden in a hotel room several days after her or his birth. The media records are unclear as to whether Caroline revealed her condition to her friends or whether they “discovered” the body without her assistance. The case was not brought to the attention of authorities until Caroline’s friends took her to receive medical attention at the local hospital and staff there notified the police.Media coverage of the death of Caroline Quinn’s baby suggests her child was stillborn or died soon after birth. As of 13 August 2014 Caroline was granted leave by the Chief Magistrate to return home to Ireland while she awaited her trial, as “without trivialising the matter, nothing more serious was alleged than the concealing of the birth” (Collins, "Irish Woman"). Caroline Quinn was not required to return to Australia to appear at her trial and when the case was presented at the Perth Magistrates Court on Thursday 2 October, all charges against her were dropped as the prosecutor felt “it was not in the public interest” to proceed with legal action (Collins, "Case").Statutory MarginalisationTo understand the similarities between the behaviours of, and legal and medical response to, Mary Summerland and Caroline Quinn, it is important to situate the deaths of their children within the wider context of child murder, concealment of birth and “bastardy” law. Tracing the development of these methods of law-making clarifies the parallels between much of the child murder, infanticide and concealment of birth narrative that has occurred in Western Australia since non-Aboriginal settlement.Despite the isolated nature of Western Australia, the nearly 400 years since the law was formed in England, and the extremely remote rural locations where both these women lived and worked, their stories are remarkably alike. It is almost as if there were a written script and each member of the cast knew what role to play: both Mary and Caroline knew to hide their pregnancies, to deny the overwhelmingly traumatic experience of giving birth alone, and to conceal the corpses of their babies. The fathers of their children appear to have cut off any connection to the women or their child. The family, friends, or employers of the parents of the dead babies knew to pretend that they did not know that the mother was pregnant or who the father was. The police and medical officers knew to charge these women and to collect evidence that could be used to simultaneously meet the needs of the both prosecution and the defence when the cases were brought to trial.In reference to Mary Summerland’s case, in colonial Western Australia when a woman gave birth to an infant who died under suspicious circumstances, she could be prosecuted with two charges: “child murder” and/or “concealment of birth”. It is suggestive that Mary may have been charged with both. The laws regarding these two offences were focused almost exclusively on the deaths of unlicensed children and were so deeply interconnected they are difficult to untangle. For Probyn, shame pierces the centre of who we think we are, “what makes it remarkable is that it reveals with precision our values, hopes and aspirations, beyond the generalities of good manners and cultured norms” (x). Dipping into the streams of legal and medical discourse that flow back to the seventeenth century highlights the pervasiveness of discourses marginalising single women and their children. This situates Mary Summerland and Caroline Quinn within a ‘burden on society’ narrative of guilt, blame and shame that has been in circulation for over 500 years, and continues to resonate in the present (Coull).An Act to Prevent the Destroying and Murthering of Bastard ChildrenIn England prior to the 17th century, penalties for extramarital sex, the birth and/or maintenance of unlicensed children or for committing child murder were expressed through church courts (Damme 2-6; Rapaport 548; Butler 61; Hoffer and Hull 3-4). Discussion of how the punishment of child murder left the religious sphere and came to be regulated by secular laws that were focused exclusively on the unlicensed mother points to two main arguments: firstly, the patriarchal response to unlicensed (particularly female) sexuality; and secondly, a moral panic regarding a perceived rise in unlicensed pregnancies in women of the lower classes, and the resulting financial burden placed on local parishes to support unwanted, unlicensed children (Rapaport 532, 48-52; McMahon XVII, 126-29; Osborne 49; Meyer 3-8 of 14). In many respects, as Meyer suggests, “the legal system subtly encouraged neonaticide through its nearly universally negative treatment of bastard children” (240).The first of these “personal control laws” (Hoffer and Hull 13) was the Old Poor Law created by Henry VIII in 1533, and put in place to regulate all members of English society who needed to rely on the financial assistance of the parish to survive. Prior to 1533, “by custom the children of the rich depended on their relations, while the ‘fatherless poor’ relied on the charity of the monastic institutions and the municipalities” (Teichman 60-61). Its implementation marks the historical point where the state began to take responsibility for maintenance of the poor away from the church by holding communities responsible for “the problem of destitution” (Teichman 60-61; Meyer 243).The establishment of the poor law system of relief created a hierarchy of poverty in which some poor people, such as those suffering from sickness or those who were old, were seen as worthy of receiving support, while others, who were destitute as a result of “debauchery” or other self-inflicted means were seen as undeserving and sent to a house of correction or common gaol. Underprivileged, unlicensed mothers and their children were seen to be part of the category of recipients unfit for help (Jackson 31). Burdens on SocietyIt was in response to the narrative of poor unlicensed women and their children being undeserving fiscal burdens on law abiding, financially stretched community members that in 1576 a law targeted specifically at holding genetic parents responsible for the financial maintenance of unlicensed children entered the secular courts for the first time. Called the Elizabethan Poor Law it was enacted in response to the concerns of local parishes who felt that, due to the expenses exacted by the poor laws, they were being burdened with the care of a greatly increased number of unlicensed children (Jackson 30; Meyer 5-6; Teichman 61). While the 1576 legislation prosecuted both parents of unlicensed children, McMahon interprets the law as being created in response to a blend of moral and economic forces, undergirded by a deep, collective fear of illegitimacy (McMahon 128). By the 1570s “unwed mothers were routinely whipped and sent to prison” (Meyer 242) and “guardians of the poor” could force unlicensed mothers to wear a “badge” (Teichman 63). Yet surprisingly, while parishes felt that numbers of unlicensed children were increasing, no concomitant rise was actually recorded (McMahon 128).The most damning evidence of the failure of this law, was the surging incidence of infanticide following its implementation (Rapaport 548-49; Hoffer and Hull 11-13). After 1576 the number of women prosecuted for infanticide increased by 225 percent. Convictions resulting in unlicensed mothers being executed also rose (Meyer 246; Hoffer and Hull 8, 18).Infanticide IncreasesBy 1624 the level of infanticide in local communities was deemed to be so great An Act to Prevent the Destroying and Murthering of Bastard Children was created. The Act made child murder a “sex-specific crime”, focused exclusively on the unlicensed mother, who if found guilty of the offence was punished by death. Probyn suggests that “shame is intimately social” (77) and indeed, the wording of An Act to Prevent highlights the remarkably similar behaviours enacted by single women desperate to avoid the shame and criminal implication linked to the social position of unlicensed mother: Whereas many lewd Women that have been delivered of Bastard Children, to avoyd their shame and to escape punishment [my italics], doe secretlie bury, or conceale the Death of their Children, and after if the child be found dead the said Women doe alleadge that the said Children were borne dead;…For the preventing therefore of this great Mischiefe…if any Woman…be delivered of any issue of the Body, Male or Female, which being born alive, should by the Lawes of this Realm be a bastard, and that she endeavour privatlie either by drowning or secret burying thereof, or any other way, either by herselfe of the procuring of others, soe to conceale the Death thereof, as that it may not come to light, whether it be borne alive or not, but be concealed, in every such Case the Mother so offending shall suffer Death… (Davies 214; O'Donovan 259; Law Reform Commission of Western Australia 104; Osborne 49; Rose 1-2; Rapaport 548). An Act to Prevent also “contained an extraordinary provision which was a reversion of the ordinary common law presumption of dead birth” (Davies 214), removing the burden of proof from the prosecution and placing it on the defence (Francus 133; McMahon 128; Meyer 2 of 14). The implication being that if the dead body of a newborn, unlicensed baby was found hidden, it was automatically assumed that the child had been murdered by their mother (Law Reform Commission of Western Australia 104; Osborne 49; Rapaport 549-50; Francus 133). This made the Act unusual in that “the offence involved was the concealment of death rather than the death itself” (O'Donovan 259). The only way an unlicensed mother charged with child murder was able to avoid capital punishment was to produce at least one witness to give evidence that the child was “borne dead” (Law Reform Commission of Western Australia 104; Meyer 238; McMahon 126-27).Remarkable SimilaritiesClearly, the objective of An Act to Prevent was not simply to preserve infant life. It is suggestive that it was enacted in response to women wishing to avoid the legal, social, corporal and religious punishment highlighted by the implementation of the poor law legislation enacted throughout earlier centuries. It is also suggestive that these pressures were so powerful that threat of death if found guilty of killing their neonate baby was not enough to deter women from concealing their unlicensed pregnancies and committing child murder. Strikingly analogous to the behaviours of Mary Summerland in 19th century colonial Western Australia, and Caroline Quinn in 2014, the self-preservation implicit in the “strategies of secrecy” (Gowing 87) surrounding unlicensed birth and child murder often left the mother of a dead baby as the only witness to her baby’s death (McMahon xvii 49-50).An Act to Prevent set in motion the legislation that was eventually used to prosecute Mary Summerland in colonial Western Australia (Jackson 7, Davies, 213) and remnants of it still linger in the present where they have been incorporated into the ‘concealment of birth law’ that prosecuted Caroline Quinn (Legal Online TLA [10.1.182]).Changing the ‘Script’Shame runs like a viral code through the centuries to resonate within the legal response to women who committed infanticide in colonial Western Australia. It continues on through the behaviours of, and legal responses to, the story of Caroline Quinn and her child. As Probyn observes, “shame reminds us about the promises we keep to ourselves” in turn revealing our desire for belonging and elements of our deepest fears (p. x). While Caroline may live in a society that no longer outwardly condemns women who give birth outside of marriage, it is fascinating that the suite of behaviours manifested in response to her pregnancy and the birth of her child—by herself, her friends, and the wider community—can be linked to the narratives surrounding the formation of “child murder” and “concealment” law nearly 400 years earlier. Caroline’s narrative also encompasses similar behaviours enacted by Mary Summerland in 1832, in particular that Caroline knew to say that her child was “born dead” and that she had merely concealed her or his body—nothing more. This behaviour appears to have secured the release of both women as although both Mary and Caroline faced criminal investigation, neither was convicted of any crime. Yet, neither of these women or their small communities were alone in their responses. My research has uncovered 55 cases linked to child murder in Western Australia and the people involved in all of these incidences share unusually similar behaviours (Gardiner). Perhaps, it is only through the wider community becoming aware of the resonance of child murder law echoing through the centuries, that certain women who are pregnant with unwanted children will be able to write a different script for themselves, and their “unlicensed” children. ReferencesButler, Sara, M. "A Case of Indifference? Child Murder in Later Medieval England." Journal of Women's History 19.4 (2007): 59-82. Collins, Padraig. "Case against Irish Woman for Concealing Birth Dropped." The Irish Times 2 Oct. 2014. ---. "Irish Woman Held for Hiding Birth in Australia Allowed Return Home." The Irish Times 13 Aug. 2014. Coull, Kim. “The Womb Artist – A Novel: Translating Late Discovery Adoptee Pre-Verbal Trauma into Narrative”. Dissertation. Perth, WA: Edith Cowan University, 2014.Damme, Catherine. "Infanticide: The Worth of an Infant under Law." Medical History 22.1 (1978): 1-24. Davies, D.S. "Child-Killing in English Law." The Modern Law Review 1.3 (1937): 203-23. Dickinson, J.R., and J.A. Sharpe. "Infanticide in Early Modern England: The Court of Great Sessions at Chester, 1650-1800." Infanticide: Historical Perspectives on Child Murder and Concealment, 1550-2000. Ed. Mark Jackson. Hants: Ashgate, 2002. 35-51.Francus, Marilyn. "Monstrous Mothers, Monstrous Societies: Infanticide and the Rule of Law in Restoration and Eighteenth-Century England." Eighteenth-Century Life 21.2 (1997): 133-56. Gardiner, Amanda. "Sex, Death and Desperation: Infanticide, Neonaticide and Concealment of Birth in Colonial Western Australia." Dissertation. Perth, WA: Edith Cowan University, 2014.Gowing, Laura. 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"Unintended Consequences for the Youngest Victims: The Role of Law in Encouraging Neonaticide from the Seventeenth to Nineteenth Centuries." Criminal Justice Studies 18.3 (2005): 237-54. O'Donovan, K. "The Medicalisation of Infanticide." Criminal Law Review (May 1984): 259-64. Osborne, Judith A. "The Crime of Infanticide: Throwing Out the Baby with the Bathwater." Canadian Journal of Family Law 6 (1987): 47-59. Rapaport, Elizabeth. "Mad Women and Desperate Girls: Infanticide and Child Murder in Law and Myth." Fordham Urban Law Journal 33.2 (2006): 527-69.Rose, Lionel. The Massacre of the Innocents: Infanticide in Britain, 1800-1939. London: Routledge & Kegan, 1986. Scheper-Hughes, Nancy. Death without Weeping: The Violence of Everyday Life in Brazil. Los Angeles: University of California Press, 1992. Swain, Shurlee, and Renate Howe. Single Mothers and Their Children: Disposal, Punishment and Survival in Australia. Cambridge: Cambridge University Press, 1995. Teichman, Jenny. 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Introduction The sensational appearance of kawaii fashion in Tokyo’s Harajuku neighborhood—full of freedom, fun, and frills— has captivated hearts and imaginations worldwide. A key motivational concept for this group is “kawaii” which is commonly translated as “cute” and can also be used to describe things that are “beautiful”, “funny”, “pretty”, “wonderful”, “great”, “interesting”, and “kind” (Yamane 228; Yomota 73; Dale 320). Representations in media such as the styling of Harajuku street model and J-pop star Kyary Pamyu Pamyu, directed by Sebastian Masuda, have helped bring this fashion to a wider audience. Of this vibrant community, decora fashion is perhaps best known with its image well documented in in street-fashion magazines such as Shoichi Aoki’s FRUiTS (1997–2017), Websites such as Tokyo Fashion (2000–present), and in magazines like KERA (1998–2017). In particular, decora fashion captures the “do-it-yourself” approach for which Harajuku is best known for (Yagi 17). In this essay we draw on New Materialism to explore the ways in which decora fashion practitioners form kawaii affective assemblages with the objects they collect and transform into fashion items. We were motivated to pursue this research to build on other qualitative studies that aimed to include the voices of practitioners in accounts of their lifestyles (e.g. Nguyen; Monden; Younker) and respond to claims that kawaii fashion is a form of infantile regression. We—an Australian sociologist and kawaii fashion practitioner, a Japanese decora fashion practitioner and Harajuku street model, and a Japanese former owner of a tearoom in Harajuku—have used an action-led participatory research method to pool our expertise. In this essay we draw on both a New Materialist analysis of our own fashion practices, a 10-year longitudinal study of Harajuku (2012–2022), as well as interviews with twelve decora fashion practitioners in 2020. What Is Decora Fashion? Decora is an abbreviation of “decoration”, which reflects the key aesthetic commitment of the group to adorn their bodies with layers of objects, accessories, and stickers. Decora fashion uses bright clothing from thrift stores, layers of handmade and store-bought accessories, and chunky platform shoes or sneakers. Practitioners enjoy crafting accessories from old toys, kandi and perler beads, weaving, braiding, crocheting novelty yarn and ribbon, and designing and printing their own textiles. In addition to this act of making, decora practitioners also incorporate purchases from specialty brands like 6%DOKI DOKI, Nile Perch, ACDC Rag, YOSUKE USA, and minacute. According to our interviewees, whom we consulted in 2020, excess is key; as Momo told us: “if it’s too plain, it’s not decora”. Decora uses clashing, vibrant, electric colours, and a wild variety of kawaii versions of monsters, characters, and food which appear as motifs on their clothing (Groom 193; Yagi 17). Clashing textures and items—such as a sweat jackets, gauzy tutus, and plastic toy tiaras—are also a key concept (Koga 81). Colour is extended to practitioners’ hair through colourful hair dyes, and the application of stickers, bandaids, and jewels across their cheeks and nose (Rose, Kurebayashi and Saionji). These principles are illustrated in fig. 1, a street snap from 2015 of our co-author, Kurebayashi. Working with the contrasting primary colours across her hair, clothes, and accessories, she incorporates both her own handmade garments and found accessories to form a balanced outfit. Her Lisa Frank cat purse, made from a psychedelic vibrant pink faux fur, acts as a salient point to draw in our eyes to a cacophony of colour throughout her ensemble. The purse is a prized item from her own collection that was a rare find on Mercari, an online Japanese auction Website, 15 years ago. Her sweater dress is handmade, with a textile print she designed herself. The stickers on the print feature smiley faces, rainbows, ducks, and candy—all cheap and cheerful offerings from a discount store. Through intense layering and repetition, Kurebayashi has created a collage that is reminiscent of the clips and bracelets that decorate her hair and wrists. This collage also represents the colour, fun, and whimsy that she immerses herself in everyday. Her platform shoes are by Buffalo London, another rare find for her collection. Her hair braids are handmade by Midoroya, an online artist, which she incorporates to create variety in the textures in her outfit from head to toe. Peeking beneath her sweater is a short colourful tutu that floats and bounces with each step. Together the items converge and sing, visually loud and popping against the urban landscape. Fig. 1: Kurebayashi’s street snap in an decora fashion outfit of her own styling and making, 2015. Given the street-level nature of decora fashion, stories of its origins draw on oral histories of practitioners, alongside writings from designers and stores that cater to this group (Ash). Its emergence was relatively organic in the early 1990s, with groups enjoying mixing and combining found objects and mis-matching clothing items. Initially, decorative styles documented in street photography used a dark colour palette with layers of handmade accessories, clips, and decorations, and a Visual-kei influence. Designers such as Sebastian Masuda, who entered the scene in 1995, also played a key role by introducing accessories and clothes inspired by vintage American toys, Showa era (1926-1989) packaging, and American West Club dance culture (Sekikawa and Kumagi 22–23). Pop idols such as Tomoe Shinohara and Kyary Pamyu Pamyu are also key figures that have contributed to the pop aesthetic of decora. While decora was already practiced prior to the release of Shinohara’s 1995 single Chaimu, her styling resonated with practitioners and motivated them to pursue a more “pop” aesthetic with an emphasis on bright colours, round shapes, and handmade colourful accessories. Shinohara herself encouraged fans to take on a rebelliously playful outlook and presentation of self (Nakao 15–16; Kondō). This history resonates with more recent pop idol Kyary Pamyu Pamyu’s costuming and set design, which was directed by Sebastian Masuda. Kyary’s kawaii fashion preceded her career, as she regularly participated in the Harajuku scene and agreed to street snaps. While the costuming and set design for her music videos, such as Pon Pon Pon, resonate with the Harajuku aesthetic, her playful persona diverges. Her performance uses humour, absurdity, and imperfection to convey cuteness and provide entertainment (Iseri 158), but practitioners in Harajuku do not try to replicate this performance; Shinohara and Kyary’s stage persona promotes ‘immaturity’ and ‘imperfection’ as part of their youthful teenage rebellion (Iseri 159), while kawaii fashion practitioners prefer not to be seen in this light. When considering the toys, stickers, and accessories incorporated into decora fashion, and the performances of Shinohara and Kyary, it is understandable that some outsiders may interpret the fashion as a desire to return to childhood. Some studies of kawaii fashion more broadly have interpreted the wearing of clothing like this as a resistance to adulthood and infantile regression (e.g., Kinsella 221–222; Winge; Lunning). These studies suggest that practitioners desire to remain immature in order to “undermin[e] current ideologies of gender and power” (Hasegawa 140). In particular, Kinsella in her 1995 chapter “in Japan” asserts that fashion like this is an attempt to act “vulnerable in order to emphasize … immaturity and inability to carry out social responsibilities” (241), and suggests that this regression is “self-mutilation [which denies] the existence of a wealth of insights, feelings and humour that maturity brings with it” (235). This view has spread widely in writing about kawaii fashion, and Steele, Mears, Kawamura, and Narumi observe for instance that “prolonging childhood is compelling” as an attractive component of Harajuku culture (48). While we recognise that this literature uses the concept of “childishness” to acknowledge the rebellious nature of Harajuku fashion, our participants would like to discourage this interpretation of their practice. In particular, participants highlighted their commitment to studies, paying bills, caring for family members, and other markers they felt indicated maturity and responsibility. They also found this belief that they wanted to deny themselves adult “insights, feelings and humour” deeply offensive as it disregards their lived experience and practice. From a Sociological perspective, this infantilising interpretation is concerning as it reproduces Orientalist framings of Japanese women who enjoy kawaii culture as dependent and submissive, rather than savvy consumers (Bow 66–73; Kalnay 95). Furthermore, this commentary on youth cultures globally, which points to an infantilisation of adulthood (Hayward 230), has also been interrogated by scholars as an oversimplistic reading that doesn’t recognise the rich experiences of adults who engage in these spaces while meeting milestones and responsibilities (Woodman and Wyn; Hodkinson and Bennett; Bennett). Through our lived experience and work with the decora fashion community, we offer in this essay an alternative account of what kawaii means to these practitioners. We believe that agency, energy, and vibrancy is central to the practice of decora fashion. Rather than intending to be immature, practitioners are looking for vibrant ways to exist. A New Materialist lens offers a framework with which we can consider this experience. For example, our informant Momota, in rejecting the view that her fashion was about returning to childhood, explained that decora fashion was “rejuvenating” because it gave them “energy and power”. Elizabeth Groscz in her essay on freedom in New Materialism encourages us to consider new ways of living, not as an expression of “freedom from” social norms, but rather “freedom to” new ways of being, as expression of their “capacity for action” (140). In other words, rather than seeking freedom from adult responsibilities and regressing into a state where one is unable to care for oneself, decora fashion is a celebration of what practitioners are “capable of doing” (Groscz 140–141) by finding pleasure in collecting and making. Through encounters with kawaii objects, and the act of creating through these materials, decora fashion practitioners’ agential capacities are increased through experiences of elation, excitement and pleasure. Colourful Treasures, Fluttering Hearts: The Pleasures of Collecting kawaii Matter Christine Yano describes kawaii as having the potential to “transform the mundane material world into one occupied everywhere by the sensate and the sociable” (“Reach Out”, 23). We believe that this conceptualisation of kawaii has strong links to New Materialist theory. New Materialism highlights the ways in which human subjects are “are unstable and emergent knowing, sensing, embodied, affective assemblages of matter, thought, and language, part of and inseparable from more-than human worlds” (Lupton). Matter in this context is a social actor in its own right, energising and compelling practitioners to incorporate them into their everyday lives. For example, kawaii matter can move us to be more playful, creative, and caring (Aiwaza and Ohno; Nishimura; Yano, Pink Globalization), or help us relax and feel calm when experiencing high levels of stress (Stevens; Allison; Yano, “Reach Out”). Studies in the behavioral sciences have shown how kawaii objects pique our interest, make us feel happy and excited, and through sharing our excitement for kawaii things become kinder and more thoughtful towards each other (Nittono; Ihara and Nittono; Kanai and Nittono). Decora fashion practitioners are sensitive to this sensate and sociable aspect of kawaii; specific things redolent with “thing-power” (Bennett) shine and twinkle amongst the cultural landscape and compel practitioners to gather them up and create unique outfits. Decora fashion relies on an ongoing hunt for objects to upcycle into fashion accessories, thrifting second-hand goods in vintage stores, dollar stores, and craft shops such as DAISO, Omocha Spiral, and ACDC Rag. Practitioners select plastic goods with smooth forms and shapes, and soft, breathable, and light clothing, all with highly saturated colours. Balancing the contrast of colours, practitioners create a rainbow of matter from which they assemble their outfits. The concept of the rainbow is significant to practitioners as the synergy of contrasting colours expresses its own kawaii vitality. As our interviewee, Kanepi, described, “price too can be kawaii” (Yano, Pink Globalization 71); affordable products such as capsule toys and accessories allow practitioners to amass large collections of glistening and twinkling objects. Rare items are also prized, such as vintage toys and goods imported from America, resonating with their own “uniqueness”, and providing a point of difference to the Japanese kawaii cultural landscape. In addition to the key principles of colour, rarity, and affordability, there is also a personalised aspect to decora fashion. Amongst the mundane racks of clothing, toys, and stationary, specific matter twinkles at practitioners like treasures, triggering a moment of thrilling encounter. Our interviewee Pajorina described this moment as having a “fateful energy to it”. All practitioners described this experience as “tokimeki” (literally, a fluttering heart beat), which is used to refer to an experience of excitement in anticipation of something, or the elating feeling of infatuation (Occhi). Our interviewees sought to differentiate this experience of kawaii from feelings of care towards an animal or children through writing systems. While the kanji for “kawaii” was used to refer to children and small animals, the majority of participants wrote “kawaii” to express the vivid and energetic qualities of their fashion. We found each practitioner had a tokimeki response to certain items that and informed their collecting work. While some items fit a more mainstream interpretation of kawaii, such as characters like Hello Kitty, ribbons, and glitter, other practitioners were drawn to non-typical forms they believed were kawaii, such as frogs, snails, aliens, and monsters. As our interviewee Harukyu described: “I think people’s sense of kawaii comes from different sensibilities and perspectives. It’s a matter of feelings. If you think it is kawaii, then it is”. Guided by individual experiences of objects on the shop shelves, practitioners select things that resonate with their own inner beliefs, interests, and fantasies of what kawaii is. In this regard, kawaii matter is not “structured” or “fixed” but rather “emergent through relations” that unfold between the practitioner and the items that catch their eye in a given moment (Thorpe 12). This offers not only an affirming experience through the act of creating, but a playful outlet as well. By choosing unconventional kawaii motifs to include in their collection, and using more standard kawaii beads, jewels, and ribbons to enhance the objects’ cuteness, decora fashion practitioners are transforming, warping, and shifting kawaii aesthetic boundaries in new and experimental ways (Iseri 148; Miller 24–25). As such, this act of collecting is a joyous and elating experience of gathering and accumulating. Making, Meaning, and Memory: Creating kawaii Assemblages Once kawaii items are amassed through the process of collecting, their cuteness is intensified through hand-making items and assembling outfits. One of our interviewees, Momo, explained to us that this expressive act was key to the personalisation of their clothes as it allows them to “put together the things you like” and “incorporate your own feelings”. For example, the bracelets in fig. 2 are an assemblage made by our co-author Kurebayashi, using precious items she has collected for 10 years. Each charm has its own meaning in its aesthetics, memories it evokes, and the places in which it was found. Three yellow rubber duck charms bob along strands of twinkling pink and blue bubble-like beads. These ducks, found in a bead shop wholesaler while travelling in Hong Kong, evoke for Kurebayashi an experience of a bubble bath, where one can relax and luxuriate in self care. Their contrast with the pink and blue—forming the trifecta of primary colours—enhances the vibrant intensity of the bracelet. A large blue bear charm, contrasting in scale and colour, swings at her wrist, its round forms evoking Lorenz’s Kindchenschema. This bear charm is another rare find from America, a crowning jewel in Kurebayashi’s collection. It represents Kurebayashi’s interest in fun and colourful animals as characters, and as potential kawaii friends. Its translucent plastic form catches the light as it glistens. To balance the colour scheme of her creation, Kurebayashi added a large strawberry charm, found for just 50 Yen in a discount store in Japan. Together these objects resonate with key decora principles: personal significance, rarity, affordability, and bright contrasting colours. While the bear and duck reference childhood toys, they do not signify to Kurebayashi a desire to return to childhood. Rather, their rounded forms evoke a playful outlook on life informed by self care and creativity (Ngai 841; Rose). Through bringing the collection of items together in making these bracelets, the accessories form an entanglement of kawaii matter that carries both aesthetic and personal meaning, charged with memories, traces of past travels, and a shining shimmering vitality of colour and light. Fig. 2: Handmade decora fashion bracelet by Kurebayashi, 2022. The creation of decora outfits is the final act of expression and freedom. In this moment, decora fashion practitioners experience elation as they gleefully mix and match items from their collection to create their fashion style. This entanglement of practitioner and kawaii matter evokes what Gorscz would describe as “free acts … generated through the encounter of life with matter” (151). If we return to fig. 1, we can see how Kurebayashi and her fashion mutually energise each other as an expression of colourful freedom. While the objects themselves are found through encounters and given new life by Kurebayashi as fashion items, they also provide Kurebayashi with tools of expression that “expand the variety of activities” afforded to adults (Gorscz 154). She feels elated, full of feeling, insight, and humour in these clothes, celebrating all the things she loves that are bright, colourful, and fun. Conclusion In this essay, we have used New Materialist theory to illustrate some of the ways in which kawaii matter energises decora fashion practitioners, as an expression of what Gorscz would describe as “capacity for action” and a “freedom towards” new modes of expression. Practitioners are sensitive to kawaii’s affective potential, motivating them to search for and collect items that elate and excite them, triggering moments of thrilling encounters amongst the mundanity of the stores they search through. Through the act of making and assembling these items, practitioners form an entanglement of matter charged with their feelings, memories, and the vitality and vibrancy of their collections. Like shining rainbows in the streets, they shimmer and shine with kawaii life, vibrancy, and vitality. Acknowledgements This article was produced with the support of a Vitalities Lab Scholarship, UNSW Sydney, a National Library of Australia Asia Studies scholarship, as well as in-kind support from the University of Tokyo and the Japan Foundation Sydney. 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Photo 190773207 / Transplant Medicine © Victor Moussa | Dreamstime.com ABSTRACT Xenotransplant research offers hope to individuals waiting for vital organ transplants. Nascent first-in-human xenotransplantation research trials present unique ethical challenges which may translate into obligations for researchers and special considerations for institutional review boards (IRBs). Contextual vulnerability is an important consideration in reviewing proposed subject selection methods. Some recipients are uniquely prone to receiving an unfair offer to enroll in an experimental clinical trial when excluded from allograft waitlists due to psychosocial or compliance evaluations. These exclusions represent an allocational injustice. Enrolling research subjects subjectively excluded from allotransplantation into xenotransplant research is not a mechanism of fair access but rather an exploitation of an unjustly option-constrained vulnerable group by the clinical transplant system. Carefully considering contextual vulnerability can help researchers and IRBs clarify eligibility criteria for xenograft clinical trials. A requirement for simultaneous allograft co-listing can safeguard the interests of vulnerable potential subjects. INTRODUCTION In the United States, the supply of allogeneic, or human-derived, organs and tissues from living donors and cadavers available for transplant into critically ill individuals is inadequate.[i] Physicians refer only half of potentially eligible patients for transplant evaluation, and the clinical transplant team ultimately waitlists less than 30 percent.[ii] Waitlists are lengthy for those who make it through the evaluation process, and many individuals die while waiting for a transplant.[iii] In contrast to allogeneic transplants, xenotransplantation, from the prefix, xeno- meaning foreign, is the process of taking live organs or tissues from an animal for surgical placement into a human recipient. Xenografts are typically sourced from porcine animals (domestic pigs) or non-human primates (baboons) and range from simple tissues like corneas to complex vital organs like hearts, lungs, or kidneys. Scientists have explored xenotransplantation methods for decades, but research with vital organ xenotransplants has been in largely haphazard and non-controlled studies, which demonstrated only short-duration survival for recipients.[iv] Recent advances using gene modification and improved immunosuppression in single-patient attempts to transplant porcine organs into brain-dead human recipients have presented more realistic human-environment models; however, these modified xenografts have still functioned only for very short durations.[v] The limited bioethics discourse on xenotransplantation centers primarily on the ethical use of high-order animals and the risks of zoonotic infectious disease spread.[vi] Bioethics pays insufficient attention to the potential for exploitation of vulnerable individuals in need of a transplant amid growing interest in phase I clinical trials in living human subjects. Clinician-investigators in contemporary literature repeatedly recommend that these trials enroll subjects who are medically eligible for, but effectively excluded or outright denied access to, an allograft.[vii] The Food & Drug Administration (FDA) recommends xenotransplants be limited to subjects with serious or life-threatening diseases for whom adequately safe and effective alternative therapies are not available.[viii] The ethically salient difference between the investigator and the regulatory recommendations is why alternatives are not available to potential subjects: because transplant centers have subjectively denied access or because there is a clinical contraindication that proves prohibitively risky. In a notable single-patient emergency use authorization, physician-investigators offered a genetically modified porcine heart to a living male recipient after denying him access to the waitlist for a human-donor heart, citing a history of non-compliance.[ix] This case suggests that a person denied access to a transplant waitlist due to subjective compliance criteria is an appropriate research subject. The physician-investigators failed to acknowledge how offering a xenotransplant to a contextually vulnerable subject is potentially unfair. Contextual vulnerability is a specific feature of a research environment that increases a subject’s risk of harm. Bioethics discourse must address this vulnerability within the transplant research environment. This paper describes the current transplant system’s use of subjective evaluation criteria, particularly psychosocial support and compliance. Subjective evaluation criteria perpetuate discriminatory medical biases rather than advance the transplant system’s goal of additional life-years gained. Researchers designing controlled human subject trials and institutional review boards (IRBs) reviewing and approving proposed protocols must consider how disparate waitlisting practices unjustly preclude some patients from a fair opportunity to access an allograft and impacts their participation in research. It is unethical for physician-investigators to intentionally take advantage of this vulnerability, creating an exploitative and unethical transaction.[x] Protocol inclusion criteria requiring proof of simultaneous allograft listing is a feasible procedural safeguard to protect research subjects’ interests. I. Injustices in Organ Allocation Solid organ allocation systems are varied but aim for equity and efficiency in granting individuals with similar claims a fair opportunity to access the scarce resource. Allocation decisions attempt to maximize the common good of additional life-years gained.[xi] The federal oversight of allograft allocation in the US uses objective clinical metrics like blood type, immune compatibility, body size, and geographic distance to match organs to recipients to increase both graft and patient survival.[xii] Transplant centers additionally use their own evaluations to waitlist patients. Although variation exists between transplant center criteria across more objective measurements, such as lab values and concurrent diseases, significant inconsistencies arise in how they incorporate subjective factors like compliance with medical recommendations, psychosocial support, and intellectual disability into the review process.[xiii] Only 7 percent of renal transplant programs use formal criteria for subjective psychosocial assessments, while no pediatric solid organ transplant programs use formal, explicit, or uniform review to assess developmental delays and psychosocial support.[xiv] Failing to establish uniform definitions and inconsistently applying evaluation criteria in the review of potential transplant candidates introduce bias into listing practices.[xv] The center they present to and the variable evaluative criteria the center uses may discount an individual’s claim to a fair opportunity to access a scarce resource. Labeling a patient non-compliant can preclude both a referral to and placement on a waitlist for potentially suitable recipients. Compliance considerations presuppose that graft longevity will be jeopardized by an individual’s failure to adhere to pre- and post-transplant regimens. It is necessary to distinguish individuals who are intentionally non-adherent to treatment regimens and demonstrate willful disregard for medical recommendations from those who are involuntarily non-adherent due to barriers that limit full participation in care plans. The former would not be offered a spot on the waitlist for an allograft, nor would investigators offer them a spot in a xenotransplantation research study. Significant and repeated refusals to participate in treatment plans would confound the ability of researchers to collect necessary data and perform the safety monitoring required by early-phase clinical trials. Enrolling subjects who are medically eligible for a traditional transplant but denied access requires a population that is suitably compliant to participate in a clinical trial reliably and safely yet judged not worthy of receipt of a standard allograft during the evaluation process. The latter population is most disadvantaged by compliance judgments and unsubstantiated outcome predictions. Multi-center research studies have found that moderate non-adherence to immunosuppression regimens is not directly associated with poor kidney transplant outcomes.[xvi] Nor are intellectual and developmental disabilities, conditions for which transplant centers may categorically refuse evaluation, clear indicators of an individual’s ability to comply with treatment regimens.[xvii] Large cohort studies of both pediatric kidney and liver transplant recipients found no correlation between intellectual disability and graft or patient survival.[xviii] Rather, it is the perpetuation of medical biases and quality-of-life judgments that presumptively label specific populations poor transplant candidates or label their support systems insufficient, notwithstanding data demonstrating their ability to achieve successful transplant outcomes.[xix] Variability in compliance assessments and psychosocial support criteria allows medical biases to persist and disproportionately impedes waitlist access to patients from underserved populations.[xx] Low-income Medicaid patients are 2.6 times more likely to be labelled non-compliant as privately insured patients.[xxi] Additionally, the medical records of Black patients are 2.5 times more likely to contain negative descriptors like non-compliant, non-adherent, aggressive, unpleasant, and hysterical than those of white patients.[xxii] The higher prevalence of stigmatizing, compliance-based language in the medical records of minority, economically disadvantaged, and disabled persons decreases the likelihood that they will be recommended for a transplant, referred for an evaluation, placed on a waiting list, or ultimately receive a transplant.[xxiii] These populations are at heightened risk of being used in ethically inappropriate ways by xenograft research that capitalizes on this precluded access. II. Defining Vulnerability Subjective evaluation criteria in allograft waitlisting disproportionately impact some populations. This precluded access to waitlists increases their vulnerability to experience harm in experimental xenotransplant research. Fair subject selection requires the development of specific and appropriate inclusion and exclusion criteria designed to address and minimize known subject vulnerabilities.[xxiv] This process begins with physician-investigators designing research trials and IRB review of proposed trials in which some or all potential subjects are vulnerable.[xxv] The literature has no consensus on defining vulnerability in the clinical or research setting.[xxvi] Prominent guidelines such as the Common Rule and the Declaration of Helsinki focus on a categorical, consent-based approach to assessing vulnerability. The capacity to provide freely given consent is a necessary prerequisite for ethical human subject research. Still, consent alone is insufficient to establish ethical permissibility or assure that a research transaction is fair.[xxvii] Harm can occur even with informed consent if it results from coercion, undue influence, or exploitation.[xxviii] Subjects have limited ability to avoid exploitation and act as an autonomous moral agents under such circumstances. Categorical assessments label groups whose members share salient features, such as prisoners or children, as vulnerable. This shared characteristic may compromise their capacity for free consent and autonomous ability to protect their interests. Although widely used, broad categorizations create monolithic views of populations but lack clarity as to why a particular feature makes one vulnerable or what a given characteristic decidedly renders one vulnerable to.[xxix] Individuals broadly vulnerable in society, such as the severely economically disadvantaged or incarcerated, are not necessarily vulnerable as research subjects in a given proposed trial.[xxx] Categorical vulnerability is insufficient to recognize that research-related harm is specific to a particular subject potentially participating in a given protocol at a definite time and place. III. Assessing for Contextual Vulnerability Ensuring ethical consent, therefore, requires more than an accounting of capacity, competency, and freedom from coercion. This requires looking beyond voluntariness to ask whether the research offer is fair. Contextual vulnerability recognizes and addresses how some subjects are at a heightened risk of being used in ethically inappropriate ways due to research-specific situations and environments.[xxxi] Contextual vulnerability derives from a specific feature of the research environment that increases a subject’s risk of harm rather than an intrinsic categorical condition of that subject. Accounting for contextual vulnerabilities is necessary because it is ethically unsound for a competent subject to give voluntary consent to an offer that is nonetheless unfair or exploitative.[xxxii] Potential subjects excluded from accessing an allograft are contextually vulnerable in a research environment that may view their diminished range of choice as an opportunity for experimental research enrollment. Proposals to exploit or take advantage of this vulnerability places these individuals at a heightened risk of research-related harm. IV. Exploitative Transactions in Xenotransplant Research In the landmark single-patient case in Maryland, a genetically modified porcine heart was offered to the subject only because he was denied access to the allograft waitlist due to a history of noncompliance with a recommended medical regimen.[xxxiii] Physician-investigators did not define how they evaluated compliance, nor did they elaborate on how this claim demonstrated the subject’s clear and convincing contraindication to receive a conventional cardiac allograft. The subject was presented with a so-called Hobson’s choice, in which there is the illusion of free choice but ultimately there is no real choice as only one outcome, the acceptance of the experimental xenograft, is permitted; access to other choices, such as pursuing standard of care waitlisting, have been removed.[xxxiv] This case set a precedent for researchers and IRBs to view individuals denied access to conventional allografts as an appropriate subject population without acknowledgment of how this transaction is consensually exploitative. Consensual exploitation occurs when researchers intentionally and wrongfully take advantage of a subject’s vulnerability.[xxxv] In the cardiac xenotransplant case, the application of subjective evaluation criteria created a unique contextual vulnerability specific to transplant waitlist practices. Investigators took advantage of the subject’s diminished ability to access the heart transplant waitlist to obtain consent for the xenotransplant procedure. Researchers have no obligation to repair unjust conditions that they bear no responsibility for causing.[xxxvi] The wrongfulness in this case is how subjective compliance-based waitlisting criteria precluded the subject from accessing the heart transplant waitlist and denied him fair consideration in accessing the standard clinical option. Then, the transplantation team exploited this disadvantage they were morally responsible for creating. The subject agreed to the terms for an experimental and high-risk xenograft from a place of vulnerability due to the diminished range of choice specifically constructed by the policy and actions of the transplant center. The options offered by the physician-investigators to the patient were manipulated to promote the research system’s interests through the production of new scientific knowledge, not necessarily the subject’s conception of his own good.[xxxvii] V. Recommendation for Simultaneous Allograft Listing Ethical research design calls for assessments of which vulnerabilities and in which contexts researchers and IRBs ought to offer additional safeguards. Subjects should be clinically suitable to produce robust, reliable, and generalizable scientific knowledge and be presented with a fair research offer. Researchers and IRBs can achieve this through an inclusion criterion requiring that a subject has previously been placed on and maintains a spot on a waitlist for a conventional allograft. Investigators and IRBs must ensure that subjects are selected based on scientific rationale, not because they are easy to recruit due to a compromised or vulnerable position.[xxxviii] Evidence of simultaneous allograft listing would provide verification that a researcher expects a potential subject to survive the burdens of an experimental xenotransplant procedure. Individuals of advanced age or with severe life-limiting comorbidities separate from their end-stage organ failure are less likely to survive after receiving an allograft or a research xenograft. These subjects would not produce valuable data in service to the study’s endpoints or knowledge generalizable to broader patient populations. Requiring evidence of simultaneous allograft listing fulfills the ethical requirement that subjects who withdraw consent are not worse off than if they had not pursued research enrollment.[xxxix] If a subject withdraws consent before receiving a xenograft, their continued place on a waitlist ensures that their fair opportunity claim to an allograft has been maintained. Simultaneous allograft waitlisting excludes contextually vulnerable subjects clinically suitable to receive a graft but denied access to a waitlist. This inclusion criteria provides an additional safeguard against unfairly capitalizing on a subject’s marginalized status. Requiring simultaneous allograft listing will narrow the potential subject population to those clinically suitable and well situated to receive a fair opportunity to enroll in research: individuals listed for an allograft but significantly unlikely to receive or to benefit from that allograft. This potential subject population includes individuals with broadly reactive antibodies who are unlikely to match to a donor organ and individuals with anatomical contraindications who face prohibitive risks with standard allografts or bridging therapies.[xl] This subject population aligns with the FDA recommendation to enroll subjects for whom safe and effective alternatives are not available.[xli] These individuals have not had their claim to a fair opportunity transgressed by a subjective evaluation process, nor has their interest in accessing a scarce resource been unjustly discounted.[xlii] Neither the individual nor the transplant clinicians are responsible for creating a clinical or statistical disadvantage to receiving a standard allograft. An offer of research enrollment extended to this population has not been manipulated to favor one party over the other, but rather appropriately considers the interests of both parties.[xliii] Researchers have an interest in identifying subjects capable of producing scientifically valuable knowledge. Potential subjects have an interest in exploring alternatives to the high morbidity of a traditional allograft. This subject population retains the autonomous choice to pursue a standard-of-care allograft or to enroll in xenograft research. Having few treatment options available does not inexorably undermine the voluntariness of research consent or increase vulnerability.[xliv] The consent transaction is not exploitative or unfair because the transplant system is not responsible for creating this diminished range of choice. Simultaneous allograft listing represents an eligibility criterion that responds to and limits the products of subjective decisions from unjustly impacting trial enrollment. VI. Counterargument: Is Something Better Than Nothing? Some may argue that for medically exigent individuals in need of a transplant, any option to participate in research is better than no option. Autonomy and dignity, however, are not advanced when an inability to access the standard of care compels a subject’s decision to pursue experimental research. An offer of research enrollment that is unfair or exploitative remains unethical regardless of whether the subject stands to benefit. Nor should benefit be expected in early-phase research. The goals of phase I research are primarily to collect short-term safety, toxicity, dosing, and pharmacologic data, not to provide efficacious treatment.[xlv] Expanding access to experimental research trials cannot be conflated with fair access to equitable health care.[xlvi] Broadened access alone does not produce a more ethical research environment. Excluding contextually vulnerable subjects from research should not be the end goal, but rather a necessary interim to call attention to the need to redress biases and existing injustices in transplant access. Research that targets a population’s vulnerability serves to enable the continuation of unjust systems. CONCLUSION In summary, the urgent and significant clinical need for transplantable organs cannot undermine the requirements of ethical research design and conduct. Fair subject selection is a requirement of ethical clinical research.[xlvii] Potential subjects enrolled in upcoming xenograft research must be selected for their ability to answer the scientific objectives of a proposed study and must have the capacity to provide freely given informed consent within a fair research environment. Denying access to allotransplants for subjective psychosocial or compliance-based claims creates contextual vulnerability specific to transplant research that perpetuates the unfairness of the organ allocation system. Ethical research that produces valuable scientific knowledge cannot exploit the rights or interests of subjects in the process. A look beyond categorical vulnerability to contextual vulnerability highlights this currently overlooked area of exploitation. - [i] “Organ Donation Statistics,” Health Resources and Services Administration, accessed April 18, 2022, https://www.organdonor.gov/learn/organ-donation-statistics. [ii] Schold, J.D. et al., “Barriers to Evaluation and Wait Listing for Kidney Transplantation,” Clinical Journal of the American Society of Nephrology 6, no. 7 (2011): 1760-67. [iii] Abouna, G.M. “Ethical Issues in Organ Transplantation,” Medical Principles and Practice 12, no. 1 (2003): 54-69. [iv] Anderson, M. “Xenotransplantation: A Bioethical Evaluation,” Journal of Medical Ethics 32, no. 4 (2006): 205-8. [v] Lambert, J. “What Does the First Successful Test of a Pig-to-Human Kidney Transplant Mean?,” ScienceNews, October 22, 2021, https://www.sciencenews.org/article/xenotransplantation-pig-human-kidney-transplant.; Koplon, S. “Xenotransplantation: What It Is, Why It Matters and Where It Is Going,” UAB News, February 17, 2022, https://www.uabmedicine.org/-/xenotransplantation-what-it-is-why-it-matters-and-where-it-is-going. [vi] Anderson, supra; Daar, A.S. “Ethics of Xenotransplantation: Animal Issues, Consent, and Likely Transformation of Transplant Ethics,” World Journal of Surgery 21, no. 9 (1997): 975-82.; Kim, M.K., et al., “The International Xenotransplantation Association Consensus Statement on Conditions for Undertaking Clinical Trials of Xenocorneal Transplantation,” Xenotransplantation 21, no. 5 (2014): 420-30. [vii] Abouna, supra; Pierson, R.N., et al., “Pig-to-Human Heart Transplantation: Who Goes First?,” American Journal of Transplantation 20, no. 10 (2020): 2669-74. [viii] Food and Drug Administration, Source Animal, Product, Preclinical, and Clinical Issues Concerning the Use of Xenotransplantation Products in Humans (Silver Spring, MD, 2016), 43, https://www.fda.gov/media/102126/download. [ix] Wang, W., et al., “First Pig-to-Human Heart Transplantation,” Innovation (Camb) 3, no. 2 (2022): 100223. [x] Carse, A.L. and Little, M.O. “Exploitation and the Enterprise of Medical Research,” in Exploitation and Developing Countries, ed. J. S. Hawkins and E. J. Emanuel (Princeton, NJ: Princeton University Press, 2008), 206-45. [xi] Halpern, S.D. and Goldberg, D.“Allocating Organs to Cognitively Impaired Patients,” New England Journal of Medicine 376, no. 4 (2017): 299-301. [xii] “How We Match Organs,” United Network for Organ Sharing, accessed April 18, 2022, https://unos.org/transplant/how-we-match-organs/. [xiii] UW Medicine Harborview Medical Center – UW Medical Center University of Washington Physicians, Selection Criteria: Kidney Transplant Recipient (Seattle, WA, 2019), 1-3, https://www.uwmedicine.org/sites/stevie/files/2020-11/UW-Medicine-Kidney-Selection-Criteria-UH2701.pdf; Penn Medicine, Kidney Transplant Selection Criteria (Philadelphia, PA: Hospital of the University of Pennsylvania), 1-2. https://www.pennmedicine.org/media/documents/instructions/transplant/kidney_transplant_selection_criteria.ashx. [xiv] Dudzinski, D.M. “Shifting to Other Justice Issues: Examining Listing Practices,” American Journal of Bioethics 4, no. 4 (2004): 35-37.; Richards, C.T., et al., “Use of Neurodevelopmental Delay in Pediatric Solid Organ Transplant Listing Decisions: Inconsistencies in Standards Across Major Pediatric Transplant Centers,” Pediatric Transplant 13, no. 7 (2009): 843-50. [xv] Dudzinski, supra. [xvi] Israni, A.K., et al., “Electronically Measured Adherence to Immunosuppressive Medications and Kidney Function after Deceased Donor Kidney Transplantation,” Clinical Transplantation 25, no. 2 (2011): 124-31. [xvii] National Council on Disability, Organ Transplant Discrimination against People with Disabilities (Washington, DC, 2019), 25-35, https://ncd.gov/sites/default/files/NCD_Organ_Transplant_508.pdf.; Halpern and Goldberg, supra. [xviii] Wightman, A., et al., “Prevalence and Outcomes of Renal Transplantation in Children with Intellectual Disability,” Pediatric Transplantation 18, no. 7 (2014): 714-19.; Wightman, A., et al., “Prevalence and Outcomes of Liver Transplantation in Children with Intellectual Disability,” Journal of Pediatric Gastroenterology and Nutrition 62, no. 6 (2016): 808-12. [xix] Richards et al., supra; Godown, J., et al., “Heart Transplantation in Children with Down Syndrome,” Journal of the American Heart Association 11, no. 10 (2022): e024883. [xx] Silverman, H. and Odonkor, P.N. “Reevaluating the Ethical Issues in Porcine-to-Human Heart Xenotransplantation,” Hastings Center Report 52, no. 5 (2022): 32-42. [xxi] Sun, M., et al., “Negative Patient Descriptors: Documenting Racial Bias in the Electronic Health Record,” Health Affairs 41, no. 2 (2022): 203-11. [xxii] Ibid. [xxiii] Dudzinski, supra; Garg, P.P., et al., “Reducing Racial Disparities in Transplant Activation: Whom Should We Target?,” American Journal of Kidney Diseases 37, no. 5 (2001): 921-31. [xxiv] Emanuel, E.J., et al., “What Makes Clinical Research Ethical?,” JAMA 283, no. 20 (2000): 2701-11. [xxv] 45 C.F.R. 46.111(b). [xxvi] Hurst, S.A. “Vulnerability in Research and Health Care; Describing the Elephant in the Room?,” Bioethics 22, no. 4 (2008): 191-202. [xxvii] The Nuremberg Code, Trials of War Criminals before the Nuremberg Military Tribunals under Control Council Law 2, no. 10: 181-2 (Washington, DC: U.S. Government Printing Office, 1949); Kipnis, K. “Vulnerability in Research Subjects: A Bioethical Taxonomy. Ethical and Policy Issues in Research Involving Human Participants.,” in Ethical and Policy Issues in Research Involving Human Participants, (Bethesda, MD: National Bioethics Advisory Commission, August 2001), G1-G13. [xxviii] Dickert, N. and Grady, C. “Incentives for Research Participants,” in The Oxford Textbook of Clinical Research Ethics, ed. E. J. Emanuel et al. (Oxford University Press, 2008), 386-96. [xxix] Gordon, B.G. “Vulnerability in Research: Basic Ethical Concepts and General Approach to Review,” Ochsner Journal 20, no. 1 (2020): 34-38. [xxx] Kipnis, supra. [xxxi] Hurst, supra. [xxxii] Lamkin, M. and Elliott, C. “Avoiding Exploitation in Phase I Clinical Trials: More Than (Un)Just Compensation,” Journal of Law, Medicine & Ethics 46, no. 1 (2018): 52-63.; Jansen, L.A. “A Closer Look at the Bad Deal Trial: Beyond Clinical Equipoise,” Hastings Center Report 35, no. 5 (2005): 29-36. [xxxiii] Wang et al., supra; Silverman and Odonkor, supra. [xxxiv] Silverman and Odonkor, supra. [xxxv] Carse and Little, supra. [xxxvi] Wertheimer, A. “Exploitation in Clinical Research,” in The Oxford Textbook of Clinical Research Ethics, ed. E. J. Emanuel et al. (Oxford University Press, 2008), 201-210. [xxxvii] Brock, D.W. “Philosophical Justifications of Informed Consent in Research,” in The Oxford Textbook of Clinical Research Ethics, ed. E. J. Emanuel et al. (Oxford University Press, 2008), 606-612. [xxxviii] Council for International Organizations of Medical Sciences, International Ethical Guidelines for Health-Related Research Involving Humans (Geneva: World Health Organization, 2016), https://cioms.ch/wp-content/uploads/2017/01/WEB-CIOMS-EthicalGuidelines.pdf. [xxxix] Ibid. [xl] Pierson et al., supra. [xli] Food and Drug Administration, supra. [xlii] Hurst, supra. [xliii] Kipnis, supra. [xliv] Hawkins, J.S. and Emanuel, E.J. “Introduction: Why Exploitation?,” in Exploitation and Developing Countries, ed. J. S. Hawkins and E. J. Emanuel (Princeton, NJ: Princeton Universiy Pres, 2008), 1-20. [xlv] Muglia, J.J. and DiGiovanna, J.J. “Phase 1 Clinical Trials,” Journal of Cutaneous Medicine and Surgery 2, no. 4 (1998): 236-41. [xlvi] Dresser, R. “The Role of Patient Advocates and Public Representatives in Research,” in The Oxford Textbook of Clinical Research Ethics, ed. E. J. Emanuel et al. (Oxford University Press, 2008), 231-41. [xlvii] MacKay, D. and Saylor, K.W. “Four Faces of Fair Subject Selection,” The American Journal of Bioethics 20, no. 2 (2020): 5-19.