Artigos de revistas sobre o tema "Home Planners, inc"

Abstract Context/Background: Destitute females are largely neglected by society and lead a miserable life, subject to mental and physical abuse. The study was planned to assess the basic health needs of females living in a destitute home and develop a model information, education, and communication (IEC) tool kit package for the specific needs to facilitate better mental and physical well-being. Aims/Objectives: This study aims to develop a model IEC toolkit package for specific health needs of females living in destitute homes. Methodology: A multiphasic mixed-methods study was conducted at the destitute home of Jodhpur. Females living in the facility were interviewed to assess their basic health needs and an IEC model toolkit was prepared for health promotion. The toolkit was implemented and feedback was taken to refine the final model toolkit. Results: All 31 females were included in the study after due consent. The mean age was 31 years (standard deviation = 7.6) and majority (10; 32.3%) were literate with no formal education. Through interviews, priority health needs were derived as mental health, menstrual hygiene, and general hygiene. Interventions designed were yoga, recreation, laughter club and anger coping skills for mental health, visual aids, role plays, and posters for menstrual and general hygiene. The final model was designed specifically for literacy levels using feedback from stakeholders. Conclusions: The developed model was received with enthusiasm by participants and implementers. It was deemed to lessen their burden in a long run, ensuring sustainability. Such model is easily implementable and could be replicated by other destitute homes for health promotion amongst destitute females.

In order to curb the harmful effects of population growth many developing countries initiated family planning programmes around the year 1960. These programmes traditionally consisted of two components namely provision of family planning services on the supply side and Information, Education and Communication (lEe) on the demand side. In many of these countries the IEC component has been performing functions such as providing information about the locations and types of services available and motivating couples to adopt family plan,ning. Besides, IEC has also been performing the function of educating the local and national leaders and educated people about population problems and benefits of smaller family size [Rogers (n.d.)]. The channels through which IEC messages are conveyed are either mass media or interpersonal communication. Mass media includes television, radio, and print media. Planned interpersonal channels include person to person contacts by home visitors etc. Whereas unplanned interpersonal communication consists of exchanges between husband and wife, among relatives and friends.

Introduction: The WHO recommends implementing integrated care models to overcome fragmented care for frail older adults. However, their effectiveness remains inconclusive, due to limited assessment of implementation processes and outcomes. As population ages, the Swiss Canton Basel-Landschaft adopted a legal framework requiring creation of Information and Advice Centers (IAC) for home-dwelling older adults. INSPIRE and the Canton are collaborating to develop, implement, and evaluate an integrated care model for the IACs. INSPIRE is a multiphase implementation science project: Phase 1 included participatory development of the INSPIRE care model by involving cantonal and local stakeholders. Stakeholder involvement is still maintained, through bi-yearly meetings. Phase 2, the present study, aimed to evaluate its feasibility and implementation and describe the adaptations needed Methods: Design: Using a mixed-methods design, we evaluated the feasibility and implementation of the INSPIRE care model and the IAC by: a) measuring fidelity to the implementation strategies to promote the IAC; b) describing IAC visitors; and c) assessing implementation outcomes of the care model. Sample: All IAC visitors; 18 older adults 65+; a nested sample of 8 frail older adults 75+; 8 informal caregivers; IAC nurse and social worker. Data sources: qualitative data from interviews (older adults/informal caregivers) and meetings (IAC staff); quantitative data from the IAC administrative information and health records Results: Aim a & b: IAC promotion: 63 out of 83 planned promotional activities were delivered by the IAC leadership (e.g., letters to older adults 75+) but not delivered to all target stakeholders. IAC visitors: Between Jan-Sept 2022, 113 older adults aged 65-74 and 362 aged 75+ visited the IAC. From the 65-74 group, 12 individuals were identified as pre-frail/frail and from those, 2 received the INSPIRE care model. From the 75+ group, 162 individuals were considered pre-frail/frail and 47 of them received the care model. The care model reached 4.8% of the target population. Referral source: 92 (aged 65-74) and 174 (aged 75+) self-referred to the IAC; few referrals by community care providers. Services requested: The main requested service in the 65-74-year-old group was social services (32/113) while for those 75+ it was a needs assessment (141/362). Aim c: Qualitative information: the nurse showed higher acceptability of the model compared to the social worker. High acceptability and feasibility of the model were perceived by older adults and their caregivers. Quantitative information: fidelity to the model core components mean score: 33/48; lowest scores for care coordination and follow-up. Implications: The high acceptability of the INSPIRE care model by older adults who acceded to the intervention and their caregivers shows that integrated care approaches may have potential to enhance quality of care although adaptations might be needed to increase its fit. In parallel, in order to increase reach, more efforts and supportive leadership are needed to promote the IAC, enhance community care providers engagement in the referral process. Next steps: Adaptation of the care model and implementation strategies to increase referrals to the IAC, thus improving reach of the intervention, and contributing to better recruitment for the effectiveness evaluation.

Background: Maternal and neonatal mortality and morbidity continue to be high in tribal areas despite the existence of various national programmes in India especially due to lack of awareness about MCH services among tribal women. This study was planned with the aim of assessing the knowledge of married tribal women of reproductive age group about MCH services.Methods: This community based longitudinal study was carried out in January to June 2014 in Bairluti, tribal area at Kurnool district in Andhra Pradesh. 168 married women of reproductive age group were selected by simple random sampling. All the participants were interviewed using a predesigned pretested semi structured questionnaire.Results: Awareness about vitamin A supplementation, family planning temporary methods, birth waiting homes, JSY, 108 services was observed to be poor among participants. Awareness about postnatal services, institutional delivery, family planning permanent methods was found to be inadequate. Whereas more than 50% of the study subjects had knowledge regarding antenatal services, home delivery by trained person, complete immunization and feeding practices. Health workers and family members were the major source of information. Literacy status had statistically significant association with knowledge about MCH services. Statistically significant improvement in awareness is observed after educational intervention.Conclusions: Knowledge of tribal women about MCH services was observed to be inadequate. Maternal literacy plays a key role in better utilization of MCH services. IEC activities with health education sessions will help to increase awareness.

Introduction In adults with cardiovascular risk factors undergoing major noncardiac surgery, unrecognized obstructive sleep apnea (OSA) was associated with postoperative cardiovascular complications. There is a need for an easy and accessible home device in predicting sleep apnea. The objective of the study is to determine the predictive performance of the overnight pulse oximetry in predicting OSA in at-risk surgical patients. Methods This was a planned post-hoc analysis of multicenter prospective cohort study involving 1,218 at-risk surgical patients without prior diagnosis of sleep apnea. All patients underwent home sleep apnea testing (ApneaLink Plus, ResMed) simultaneously with pulse oximetry (PULSOX-300i, Konica Minolta Sensing, Inc). The predictive performance of the 4% oxygen desaturation index (ODI) versus apnea-hypopnea index (AHI) were determined. Results Of 1,218 patients, the mean age was 67.2 ± 9.2 years and body mass index (BMI) was 27.0 ± 5.3 kg/m2. The optimal cut-off for predicting moderate-to-severe and severe OSA was ODI ≥15 events/hour. For predicting moderate-to-severe OSA (AHI ≥15), the sensitivity and specificity of ODI ≥ 15 events per hour were 88.4% (95% confidence interval [CI], 85.7–90.6) and 95.4% (95% CI, 94.2–96.4). For severe OSA (AHI ≥30), the sensitivity and specificity were 97.2% (95% CI, 92.7–99.1) and 78.8% (95% CI, 78.2–79.0). The area under the curve (AUC) for moderate-to-severe and severe OSA was 0.983 (95% CI, 0.977–0.988) and 0.979 (95% CI, 0.97–0.909) respectively. Discussion ODI from oximetry is sensitive and specific in predicting moderate-to-severe or severe OSA in at-risk surgical population. It provides an easy, accurate, and accessible tool for at-risk surgical patients with suspected OSA.

Background: Hypertension and cardiovascular disease (CVD) is the leading cause of morbidity and mortality in patients on dialysis. Blood pressure (BP) control is of paramount importance in reducing morbidity and mortality in this high-risk population, although there is no consensus on target BP. Ambulatory BP recording is considered gold standard in estimating the BP among patients on dialysis. But, ambulatory BP recording is cumbersome, not economical, and not easily available to Indian patients. Therefore, an easier and more convenient method has to be implemented to monitor the BP. Some studies demonstrated that home BP recordings may be promising in making a more accurate diagnosis of hypertension in hemodialysis patients. However, there is paucity of research that compares home-based BP monitoring with ambulatory BP recordings in patients on hemodialysis. The present study was thus planned to examine the hypothesis that out-of-dialysis unit BP measurement in the form of home-based measurement of BP is as efficacious as ambulatory BP monitoring (ABPM) in evaluating hypertension among patients on hemodialysis. Aim: To assess the accuracy of home-based BP monitoring in comparison to ABPM among chronic kidney disease (CKD) patients on hemodialysis. Objective: To assess the ability of home-based BP monitoring to detect hypertension among CKD patients on hemodialysis. Materials and methods: This was a prospective observational study carried out in the Department of Medicine in a tertiary care hospital. The total duration of the study was 24 months. Fifty-two CKD patients on hemodialysis fulfilling the eligibility criteria were taken up for the study after informed consent. Blood pressure was measured using a standardized BP measuring equipment at home, thrice a day for 3 days in the interdialysis period. Also, all these patients were subjected to 24 hours of ABPM in the interdialysis period. Home-based BP monitoring records are then compared with the one-time ABPM records. All statistical calculations were done using computer programs Microsoft Excel 2007 (Microsoft Corporation, NY, USA) and SPSS (Statistical Product and Service Solutions; SPSS Inc., Chicago, Illinois, USA) version 21. Result: In our study, the mean awake, asleep, and average ABPM readings of systolic blood pressure (SBP) and diastolic blood pressure (DBP) were 141.69/81.33, 139.39/80.04, and 141.23/80.67 mm Hg, respectively, while the mean SBP and DBP recorded on home-based measurements were 143.6 and 82.69 mm Hg, respectively. All the subjects showing mean SBP ≥140 mm Hg as per ABPM had home-based readings of above 140 mm Hg while 23 out of 27 patients (85.2%) with mean SBP <140 mm Hg as per ABPM had similar observation by home-based monitoring (kappa 0.847; p<0.01). All the subjects showing mean DBP ≥90 mm Hg as per ABPM had home-based readings of above 90 mm Hg while 42 out of 44 patients (95.5%) with mean DBP <90 mm Hg as per ABPM had similar observation by home-based monitoring (kappa 0.866; p<0.01). Conclusion: Our study shows that there is no difference between BP readings as observed by ABPM and home-based BP monitoring. Also, home-based BP monitoring can detect hypertension as effectively as ABPM among patients on hemodialysis, thereby making home-based BP monitoring a safe and reliable method of BP measurement in clinical practice

Objectives: With the emerging trends, more cluster randomized trials will be conducted in older adults, where facilities are randomized rather than individuals. Similarity of individuals from a facility (intraclass correlation coefficient/ICC) plays a critical role, but not readily available. We document ICCs for measures commonly used in community-dwelling older adults and discuss implications. Method: Secondary analysis of a range of baseline measures from the On the Move cluster randomized trial, whose ICCs were computed using a linear mixed model. Results: Self-reported disability measures related to facility characteristics and sense of community had the greatest ICCs (>0.10), while mobility performance measures had 0.05 to 0.10, and cognitive measure 0.11. Discussion: The ICCs for measures commonly used in older adults are of a sufficient magnitude to have a substantial impact on planned sample size of a study and credibility of results, and should be taken into consideration in study planning and data analysis.

DC Motors are broadly utilized in mechanical applications, home appliances and robot controllers on account of their high unwavering quality, adaptability and low cost, where speed and position control of motor are required. The activity of a DC motor is performed by conventional controllers and intelligent controllers in MATLAB environment. The speed control of a dc motor utilizing conventional controllers (PID, IMC) and intelligent controllers (FLC, ANFIS) in view of MATLAB simulation program. A numerical model of the process has been created utilizing genuine plant information and afterward conventional controllers and intelligent controllers has been planned. The outcome acquired as rise time, settling time. Out of these controllers FUZZY can give a superior outcome. Another intelligent controller like ANFIS Controller was created based on Sugeno type FIS along with PID can give a superior performance like quicker settling time, and its sensitivity to applied load. A relative investigation of execution assessment of all controllers has been finished.

Abstract Minimally invasive surgery (MIS) techniques may enable faster patient recovery and reduce the incidence of postoperative infections. Image-guided approaches to spinal instrumentation and interbody fusion have gained popularity in MIS, reducing radiation exposure and improving screw placement accuracy. Use of a novel computed tomography (CT) navigation-based robotic arm provides for live image-guided surgery, with the potential for augmenting existing MIS approaches and improving the accuracy of instrumentation placement. We report on the surgical technique of MIS transforaminal lumbar interbody fusion (TLIF) performed with the assistance of a new robotic device (ExcelsiusGPS, Globus Medical Inc, Audubon, Pennsylvania) and intraoperative CT guidance in a patient with single-level lumbar spondylolisthesis. The patient gave written informed consent before treatment. Institutional review board approval was deemed unnecessary. The patient was positioned prone on the operating room table, and an intraoperative CT was obtained with stereotactic arrays placed bilaterally in the posterior superior iliac spine. Screw trajectories were planned using the ExcelsiusGPS software and placed percutaneously with the robotic arm without using a Kirschner wire. Interbody placement was performed via an expandable retractor after muscle dilation. Screw placement accuracy was determined with postoperative CT, which demonstrated good screw positioning without breach. The patient recovered well and was discharged home without complications. The combined use of the new robotic device and intraoperative CT enables accurate and safe fixation for the treatment of symptomatic lumbar spondylolisthesis. The operative video demonstrates the technical nuances of positioning, stereotactic marker placement, work flow, and screw placement. Used with permission from Barrow Neurological Institute, Phoenix, Arizona.

TPS3155 Background: Anaplastic lymphoma kinase ( ALK) fusions are found in 3–8% of non-small cell lung cancers (NSCLC) and ̃0.2% of other tumor types. Alectinib is a selective, CNS-active ALK tyrosine kinase inhibitor approved as first-line treatment for adults with advanced ALK fusion-positive ( ALK-fp) NSCLC based on the phase 3 ALEX trial (NCT02075840; PMID 28586279). Preliminary evidence supports investigation of alectinib in a tumor-agnostic setting. ALK inhibitors have shown efficacy in ALK-fp tumor types other than NSCLC (PMIDs 29685646; 28977547; 30591488), with alectinib showing efficacy irrespective of ALK fusion partner and against ALK-activating mutations (PMIDs 29642598; 29559559). Methods: Alpha-T is a phase 2 open-label, single-arm trial (NCT04644315) with an innovative home-based remote design, currently enrolling adults with histologically confirmed, locally advanced/metastatic solid tumors (except lung cancer and cancers of unknown primary) harboring ALK fusions or selected mutations ( ALK-mut; R1275Q, F1245C, F1174X). The decentralized design permits enrollment regardless of location, allows most assessments to be home-based and maintains the relationship between patients (pts) and their treating oncologist. Key inclusion criteria: no alternative or unsuitable to receive standard therapy; ECOG PS 0–2; adequate hematologic, renal and hepatic functions; no prior ALK inhibitor; measurable solid tumor (RECIST 1.1) or primary brain tumor (RANO); asymptomatic or stable CNS metastases permitted. Pts are identified via the Foundation Medicine Inc. (FMI) Precision Enrollment service. For any solid tumor identified as ALK+ (fusion/selected mutation) by next-generation sequencing in tissue/blood (F1 CDx/F1L CDx, FMI), the ordering oncologist is given trial details and can liaise with a Science 37 investigator. Pts receive 600mg oral alectinib twice a day with food until radiological PD, unacceptable toxicity, withdrawal of consent or death. Home-based assessments (eg, physical examination, blood sampling, questionnaire completion) are conducted in-person by a mobile nurse at baseline and every 4 weeks, with remote support from the Science 37 investigator via their telemedicine platform. Tumor assessments at screening and every 8 weeks are performed at a local radiology facility. Primary endpoint: confirmed ORR by investigator in pts with ALK-fp tumors (RECIST 1.1). Secondary endpoints: ORR by independent review facility (IRF); DoR and PFS; intracranial ORR and DoR (IRF); OS and safety. Descriptive analyses are planned for pts with ALK-mut tumors and primary brain tumors. Pharmacokinetics and biomarkers will be evaluated. Patient-reported outcomes will be assessed via the EORTC QLQ-C30 and EuroQoL EQ-5D-5L questionnaires. Target enrollment is 50 pts with ALK-fp tumors evaluable by RECIST. As of 9 Feb 2021, 1 pt is in screening. Clinical trial information: NCT04644315.

Abstract Lateral interbody fusion has distinct advantages over traditional posterior approaches. When adjunctive percutaneous pedicle screw fixation is required, placement from the lateral decubitus position theoretically increases safety and improves operative efficiency by obviating the need for repositioning. However, safe cannulation of the contralateral, down-side pedicles remains technically challenging and often prohibitive. In this video, we present the case of a 59-yr-old man with refractory back pain and bilateral lower extremity radiculopathy that was worse on the left than right side. The patient provided written informed consent before undergoing treatment. We performed minimally invasive single-position lateral interbody fusion with robotic (ExcelsiusGPS, Globus Medical Inc, Audubon, Pennsylvania) bilateral percutaneous pedicle screw fixation for the treatment of asymmetric disc degeneration, dynamic instability, and left paracentral disc herniation with corresponding stenosis at the L3-4 level. A left-sided minimally invasive transpsoas lateral interbody graft was placed with fluoroscopic guidance. Without changing the position of the patient or breaking the sterile field, an intraoperative cone-beam computed tomography image was obtained for navigational screw placement with stereotactic trackers in the iliac spine. Screw trajectories were planned using the robotic navigation software and were placed percutaneously in the bilateral L3 and L4 pedicles using the robotic arm. Concomitant lateral fluoroscopy may be used if desired to ensure the fidelity of the robotic guidance. The patient recovered well postoperatively and was discharged home within 36 h, without complication. Single-position lateral interbody fusion and percutaneous pedicle screw fixation can be accomplished using robotic-assisted navigation and pedicle screw placement. Used with permission from Barrow Neurological Institute.

Results of a preliminary study conducted by the author on 28 November 2018 in Kassi-Kassi Health Center Public City of Makassar were interviews with 11 third trimester pregnant women who visited antenatal check, 8 (70%) of pregnant women have not planned where labor, labor companion, potential blood donors and the sticker affixed on the door P4K yet home mom for not knowing the importance of the decal and never be explained by health workers at the first checkups. While 7 (60%) of pregnant mother's husband has not determined the place of labor, labor companion, potential blood donors and did not accompany the mother when the checkups. This study aims to determine the relationship of husband support, knowledge of third trimester pregnant women at health centers with the implementation P4K-Kassi Kassi Makassar.This research uses analytic survey with cross sectional approach, the population in this study is the third trimester pregnant women, using the formula Lameshow obtained sample 85 subjects with a sampling technique is purposive sampling.Statistical analysis showed the Chi-square test obtained significant value p value 0,000 (p<0,05) husband's support with coefficient value (Phi= 0,493), knowledge of third trimester pregnant women p value of 0,001 (p <0,05) with coefficient value (Phi= 0,357). So it can be concluded that there is a relationship of husband support, knowledge of third trimester pregnant women with P4K implementation. Therefore, the husband is expected to support the implementation of the plan P4K safe delivery and is able to prevent pregnancy complications. And for health workers can improve IEC counseling and evaluation of the execution P4K, in particular blood donor candidates planning and sticking stickers P4K at home pregnant women.

Background: Tobacco is one of the leading risk factors for many respiratory infections and is linked to the clinical severity of the disease. COVID-19 primarily infects the lungs and causes severe pneumonia-like illness. Tobacco consumption may thus, increase the risk for developing COVID-19. However, this study was planned to assess the tobacco consumption among COVID-19 patients and determine the relationship between SARS CoV-2 and tobacco use among COVID-19 patients. Methods: Lists of laboratory-confirmed COVID-19 positive patients aged 18-70 years were obtained from District Government Hospital on November 2020 and were interviewed telephonically after taking informed consent. A total of 470 patients under home isolation for the past one month after getting diagnosed with SARS CoV-2 were recruited in this study. Data was entered in MS Excel 2019 (Microsoft Corp.) and analysis was done using SPSS 25 (IBM Inc.). Chi-square and Fisher’s exact test were used and significance level was set 0.05 with 95% confidence interval. Results: In the present study, the mean (standard deviation) age of participants was 37.8 (12.1) years. Among the COVID-19 patients, 21% of participants were tobacco users. Clinical symptoms such as fever, severe acute respiratory illness (SARI), acute respiratory illness (ARI), loss of taste/smell, and other symptoms such as body-ache, myalgia, nasal secretion and flue like symptoms were presented; of which most common symptoms were fever (26.8%) followed by SARI or ARI (11.5%) and significantly presented more among tobacco users (66.3%) than non-tobacco users (55.6%) (P=0.036). Nonetheless smokers, these symptoms also affected significantly SLT users (64.8%) (P=0.029) and dual tobacco users (100%) (P=0.010). Conclusion: Tobacco use may worsen COVID-19 disease symptoms among COVID-19 patients.

Visual pollution (VP) is a visual landscape quality issue, and its most consistently recognized symptom is an excess of out of home advertising billboards (OOHb). However, the VP related research concerns landscape aesthetic and advertisement cultural context, leaving the impact of outdoor billboard infrastructure on landscape openness unanswered to date. This research aims to assess the visual impact of outdoor billboard infrastructure on landscape openness, precisely the visual volume—a key geometrical quality of a landscape. The method uses 3D isovists and voxels to calculate the visible and obstructed subsets of visible volume. Using two case studies (Lublin City, Poland) and 26 measurement points, it was found that OOHb decreased landscape openness by at least 4% of visible volume; however, the severe impact may concern up to 35% of visual volume. GIS scientists develop the proposed method for policy-makers, and urban planners end users. It is also the very first example of compiling 3D isovists and voxels in ArcGIS Pro software in an easy-to-replicate framework. The research results, accompanied by statistically significant proofs, explain the visual landscape’s fragility and contribute to understanding the VP phenomenon.

Background: Fatty liver is closely associated with lifestyle. The bank employees have been often witnessed having junk food, coming home late and not engaged in any physical activity. Hence, an attempt has been made by the investigator to assess the knowledge of bank employees regarding fatty liver condition so that an educational intervention will be planned to motivate them for remaining physically active and healthy. Objectives: The descriptive study assessed the knowledge regarding fatty liver among bank employees. Materials and Methods: The 109 subjects were selected by convenience sampling technique. The knowledge questionnaire having 24 items and baseline Performa having 12 items were given for the subjects to place their responses. Results: The mean percentage of 50 revealed in present study showed that subjects were with inadequate knowledge regarding fatty liver condition. There was a significant association between knowledge of bank employees regarding fatty liver and age (χ2 = 28.31, p = 0.001),, religion (χ2 = 178.37, p = 0.001),, type of family (χ2 = 34.13, p = 0.01),, designation (χ2 = 48.02, p = 0.001),, job experience (χ2 = 25.64, p = 0.001),, qualification (χ2 = 10.46, p = 0.001),, food from restaurant (χ2 = 70.56, p = 0.001), and BMI of the subjects (χ2 = 73.04, p = 0.001). Conclusion: From the findings it can be inferred that more the years of job experience, more the chances of getting fatty liver. IEC activities can play a great role to improve the knowledge of bank employees regarding fatty liver condition. Keywords: Knowledge, fatty liver and bank employees.

OBJECTIVES: Vaso-occlusion is a hallmark feature of sickle cell disease (SCD) that promotes ischemia-reperfusion injury and leads to acute pain episodes, known as vaso-occlusive crises (VOCs). VOCs are disabling and frequently impact on the ability of the patient to attend work or school and participate in activities of daily living. VOCs are the primary reason for medical facility visits amongst SCD patients and are associated with increased morbidity and mortality. The acute pain of a VOC often requires parenteral opioid administration in hospital emergency departments and inpatient units. Patients are also frequently prescribed oral opioids to aid in home management of VOCs. The development of new SCD therapies that have been shown to reduce or prevent VOCs has generated interest in their potential as opioid sparing agents. This study evaluated the effect of crizanlizumab-a humanized monoclonal antibody indicated in the US for reduction of VOCs in SCD-on opioid use for managing VOC related pain. METHODS: In this post hoc analysis, subject-level data from the SUSTAIN (NCT01895361) trial were analyzed to determine the number of days of opioid use by patients in both the 5.0 mg/kg crizanlizumab and placebo arms during the 52-week follow-up period. Opioid use captured in case report forms was retrospectively assessed. Due to the common use of "as needed" (PRN) dosing for analgesics, a decision tree was developed in conjunction with clinical advice to guide classification of the opioid as being taken or not taken on a given day based on clinically plausible assumptions. Assumptions considered dose frequency (fixed vs. PRN), route of administration (parenteral vs. oral), and concomitant medications (anti-emetics and anti-histamines). Opioid record start dates, end dates, and dose frequencies were used to determine the number of unique days during the trial that each patient had taken at least one opioid. The annualized days with opioid use was calculated for each patient by dividing their number of unique days on opioids by their duration (days) in the trial. The distribution of annualized days with opioid use was compared between patients from the 5.0 mg/kg crizanlizumab and placebo arms. Mann-Whitney U tests with p-values were used to test differences between arms. A four-step analysis was planned to incorporate an increasing number of assumptions to define whether the opioid had been taken on a given day (see footnote of Table 1). Analyses were performed primarily in the per-protocol (PP) population considering all routes of administration and parenteral use only. Outcomes in the intention-to-treat (ITT) population were also assessed. RESULTS: The PP population included 40 patients in the 5.0 mg/kg crizanlizumab arm and 41 patients in the placebo arm. A comparison of the baseline demographics (age, sex, genotype, hydroxyurea use, crisis frequency, and opioid use) showed no statistically significant differences between the two arms. Results of the final step of each analysis are presented as the primary analysis (see Table 1); results of Step 1 were considered a sensitivity analysis (not shown). The median annualized days with opioid use in the PP population was lower in the crizanlizumab arm compared with the placebo arm (absolute reduction: 4.00 days; relative reduction: 57%; p=0.162). The median annualized days with parenteral opioid use was lower in the crizanlizumab arm compared with the placebo arm (absolute reduction: 2.01; relative reduction: 50%; p=0.047). Results in the ITT population (see Table 1) and for sensitivity analyses (not shown) showed similar trends of reduced annualized days with opioid use for patients in the crizanlizumab group compared to the placebo group. CONCLUSIONS: These findings indicate that crizanlizumab, compared with placebo, may reduce the annual number of days where opioids are used to manage pain from VOCs. Importantly, the benefit was observed for parenteral and oral opioids, demonstrating clinical and patient relevance. These findings are concordant with the tendency for crizanlizumab to reduce the number of VOCs experienced by SCD patients annually; the primary finding of the SUSTAIN trial. The reduction in opioid use with crizanlizumab requires exploration in future studies, but the findings of this study translate into positive clinical and patient-relevant outcomes beyond reducing the frequency of VOCs. Disclosures Smith: Shire: Research Funding; Imara: Research Funding; Novo Nordisk: Consultancy; Ironwood: Consultancy; Pfizer: Consultancy; Incyte: Other: Investigator; Health Resources and Services Administration: Other: Investigator, Research Funding; Patient-Centered Outcomes Research Institute: Other: Investigator, Research Funding; NHLBI: Research Funding; Shire, Inc.: Other: Investigator, Research Funding; Global Blood Therapeutics, Inc.: Consultancy, Research Funding; Novartis, Inc.: Consultancy, Other: Investigator, Research Funding; Emmaeus Pharmaceuticals, Inc.: Consultancy; GlycoMimetics, Inc.: Consultancy. Ataga:Bioverativ: Honoraria, Membership on an entity's Board of Directors or advisory committees; Shire/Takeda: Research Funding; Editas Medicine: Honoraria; Global Blood Therapeutics: Honoraria, Membership on an entity's Board of Directors or advisory committees, Research Funding; Pfizer: Research Funding; Forma Therapeutics: Consultancy; Modus Therapeutics: Honoraria; Novo Nordisk: Honoraria, Membership on an entity's Board of Directors or advisory committees; Novartis: Consultancy, Honoraria, Research Funding. Saraf:Global Blood Therapeutics: Membership on an entity's Board of Directors or advisory committees, Other: Advisory Boards, Speakers Bureau; Novartis, Global Blood Therapeutics: Membership on an entity's Board of Directors or advisory committees; Pfizer, Global Blood Therapeutics, Novartis: Research Funding. Adisa:Novartis Pharmaceuticals Corporation: Current Employment. Bailey:Novartis Pharmaceuticals Corporation: Current Employment. Ramscar:Novartis Pharma AG: Current Employment. Bonner:Eversana: Current Employment. Brown:Eversana: Current Employment. Pastor:Eversana: Current Employment.

Abstract Background: The prognosis for advanced/metastatic triple negative breast cancer (TNBC) remains poor and novel therapeutic strategies are urgently needed to improve outcomes. Insulin resistance and obesity contribute to cancer progression and are independent predictors of worse survival after TNBC diagnosis. Chemotherapy worsens insulin resistance, body mass index, and multiple other metabolic parameters which can paradoxically limit treatment efficacy and survival. Methionine aminopeptidase 2 (MetAP2/p67) is overexpressed in many tumor types and MetAP2 inhibitors exhibit broad anti-tumor activity. Additionally, MetAP2 inhibitors improve insulin resistance, reduce adiposity, and normalize levels of adipokines, attenuating the effects of metabolic dysfunction on tumor growth. Evexomostat (SDX-7320) is a second-generation MetAP2 inhibitor designed to improve drug-like properties and minimize central nervous system toxicities. Evexomostat improved insulin sensitivity, reduced fat mass and normalized adipokine levels in preclinical models of obesity, and reduced tumor growth in preclinical models of TNBC. In phase 1 trials, MetAP2 inhibition combined with chemotherapy was safe and well tolerated, while evexomostat monotherapy partially restored insulin sensitivity, reduced angiogenic factors as well as adipokines and showed anti-metastatic effects in patients with advanced solid tumors. The goal of this phase 2 study is to test whether evexomostat in combination with eribulin chemotherapy prevents worsening of insulin resistance and augments tumor response in patients with metastatic TNBC and concomitant metabolic dysfunction. Methods: This is a single-center, placebo-controlled phase 2 randomized control trial of evexomostat, a MetAP2 inhibitor, in combination with eribulin chemotherapy. Eligible patients must have histologically confirmed metastatic TNBC, measurable disease or ≥1 predominantly lytic bone lesion, baseline metabolic dysfunction defined as hemoglobin A1c &gt;5.5% and/or BMI ≥30 kg/m2, have received ≤2 prior lines of therapy in the advanced/metastatic setting, have ECOG performance status ≤1, and adequate organ function. Patients with uncontrolled or insulin-dependent type II diabetes, or who require combination antihyperglycemic therapy are excluded. During the safety run-in period, 15 patients will be assigned to receive evexomostat 49 mg/m2 every 2 weeks in combination with eribulin 1.4 mg/m2 administered on days 1 and 8 of a 21-day cycle. Upon safety confirmation, an additional 40 patients will be randomized 2:1 to receive evexomostat or placebo in combination with eribulin. The primary endpoint is metabolic efficacy assessed by change in Homeostatic Model Assessment for Insulin Resistance (HOMA-IR) score. Secondary endpoints include objective response rate, progression-free survival, duration of response, safety and tolerability, patient-reported outcomes, changes in metabolic markers, and changes in body composition parameters. Historically, HOMA-IR scores double during chemotherapy, and this trial will test whether evexomostat will attenuate the expected rise in HOMA-IR. Specifically, the trial will have &gt;90% power to detect a difference between a 1.5-fold change in HOMA-IR in the control arm versus no change in the investigational arm while controlling the Type I error at 5%. This trial opened to accrual in July 2022. A total accrual of 61 patients is planned with a goal of 55 evaluable patients. For any inquiries/questions, please contact Sherry Shen at shens1@mskcc.org. Clinical trial registry number: pending Funding, study drug evexomostat and other support provided by: SynDevRx, Inc. Citation Format: Sherry Shen, Anna Whalen, Mark E. Robson, Larry Norton, Tiffany A. Traina, Neil M. Iyengar. The ARETHA Study: A phase 2 randomized control trial of Eribulin with Evexomostat (SDX-7320) or placebo for patients with metastatic triple-negative breast cancer and metabolic dysfunction [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr OT2-17-02.

Idiopathic renal arteriovenous fistulas (RAVFs) are rare vascular anomalies with no identifiable etiology. We present a case of 65-year-female who was being evaluated for complaints of the right flank pain and dysuria with no past history of trauma or surgery. Computed tomography showed arteriovenous fistula in lower pole of the right kidney with dilated branch of the right renal artery and dilated venous sacs. The patient was planned for endovascular embolization. Right renal angiogram showed dilated lower polar artery with a single-hole arteriovenous fistula. Selective coil embolization of the arterial channel was done. Post-deployment angiogram showed complete occlusion of the fistula and normal opacification of remaining segmental branches. On follow-up 1-month later, the patient was in good general condition. With advancements in endovascular techniques, transcatheter embolization has become initial treatment of choice for managing RAVF due to its less incidence for complications and preservation of renal function.

Background: The FDA approved hydroxyurea (HU) for the treatment of sickle cell disease (SCD) in children because it was deemed a safe and efficacious treatment. HU modifies the course of the disease, reduces complications, improves survival, and has few long-term side effects. Despite these benefits, HU uptake remains low for young children. Over 75% of patients who could benefit from HU do not receive the treatment. NHLBI clinical practice guidelines recommend use of shared decision making for HU initiation but currently, there is no "gold standard" for hematology providers to follow when beginning their discussion about HU. Thus, there is likely a gap between care guidelines and clinical practice. A first step in closing this gap is to better understand the current practice utilized by hematology providers when discussing HU as a therapeutic option. Objectives: The goal of the present study is to describe current practice used by hematology providers when discussing HU with parents of young children with SCD (0 - 5 years of age), Our primary aims are: 1) Map the process of offering HU to identify common themes, overlaps, and variations, 2) Examine the impact of a brief video presentation about the NHLBI HU guidelines on provider knowledge and comfort levels. Methods: The dissemination of methods to increase adherence to NHLBI HU guidelines are being evaluated as part of a clinical trial (NCT03442114). Hematology providers at 6 children's hospitals serving young patients with SCD completed process maps that described their current practice for discussing HU initiation with parents. Twenty five hematology providers at 10 institutions across the United States viewed a video didactic presentation on the NHLBI HU guidelines for SCD. Knowledge and comfort regarding discussing HU was assessed using a 10-point scale before and after the video. We also collected data on provider demographics, years practicing, and percentage of patients seen with SCD each week in their practice. Results: Preliminary analyses identified common themes (see Table 1 for provider characteristics). All 6 sites reported that labs and vitals were taken prior to the visit so they could be reviewed with the family. A medical doctor, nurse practitioner, or licensed practical nurse (LPN) led the HU initiation discussion. The majority of sites give their families HU-related materials to take home after the discussion and followed-up regarding the family's decision at the next clinic visit (i.e. planned for a two-visit HU initiation process). Variations identified included providing HU-related materials to the family prior to the visit, when the discussion would occur, and whether NHLBI HU guidelines framed the discussion (Figure 1). Paired samples t-tests assessed for change in medical provider reported HU knowledge and comfort before and after the SCD didactic presentation. Data revealed that there were no differences in provider comfort,t(21) = .77, p = .45, d = .03. In contrast, there was a trend towards a significant increase in medical provider knowledge from before (M = 8.4, SD = 2.3) to after (M = 8.7, SD = 2.1) the presentation, t(21) = 1.8, p = .08, d = .11, small effect. Correlation analyses determined that higher baseline provider knowledge and comfort with HU were significantly correlated with seeing more SCD patients on a weekly basis (Figure 2). Discussion: This study identified common elements of clinical practice for HU initiation in young children with SCD, but variations were also revealed. All institutions in the study obtained lab work prior to the discussion with the family; however the provider initiating the discussion varied by site (e.g., 1 site used an LPN). Most institutions plan for a two-visit discussion as families may not be ready to make a decision during the first visit but feel more supported over time. It is critical that patients and families make their decision based on SCD-specific HU information. Study data indicated that a brief didactic presentation elicited a small improvement provider HU knowledge. Moreover, exposure to the SCD population was strongly related to knowledge and comfort with HU, suggesting that hematology providers with more experience working with patients with SCD may be in the best position to initiate discussions about HU. The incorporation of decision support tools might help to support hematology providers and reduce the variation across institutions observed in our study. Disclosures King: Tioma Therapeutics (formerly Vasculox, Inc.):: Consultancy; RiverVest: Consultancy; Novimmune: Research Funding; WUGEN: Equity Ownership; Celgene: Consultancy; Cell Works: Consultancy; Magenta Therapeutics: Membership on an entity's Board of Directors or advisory committees; Amphivena Therapeutics: Research Funding; Bioline: Consultancy; Incyte: Consultancy. Piccone:Hemex Health, Inc.: Patents & Royalties. Neumayr:Terumo: Research Funding; Apopharma: Consultancy; PCORI: Research Funding; NHLBI: Research Funding; Bluebird Bio: Research Funding; Sancillo: Research Funding; Seattle Children's Research Grants: Research Funding; Doris Duke Foundation: Research Funding; Novartis: Research Funding; Bayer: Consultancy; Celgene: Research Funding; Imara: Research Funding; Sangamo: Research Funding; Silarus: Research Funding; Pfizer: Consultancy, Research Funding; Emmaus: Consultancy; CTD Holdings: Consultancy; GBT: Research Funding; La Jolla Pharmaceuticals: Research Funding; HRSA: Research Funding; CDC: Research Funding. Meier:CVS Caremark: Consultancy.

<p><strong>Abstract.</strong> This paper presents part of the results obtained by a master’s research entitled “Teaching of Geography to visually impaired students: new methodologies to discuss the concept of landscape”. The data collected was the result of 8 years’ experience in teaching Geography to visually impaired students at the Benjamin Constant Institute (IBC), a school in Rio de Janeiro specialized in teaching blind and visual impaired students for over 150 years. This study was motivated by the difficulty such students face during the learning process of geographic concepts.</p><p>The hypothesis raised during the research was that the use of didactic materials, which include the senses other than sight, mitigate such difficulties by enabling alternative sensorial paths. We chose the topic <i>landscapes</i> and the representation forms of such an important category in Geography.</p><p>Three visually impaired students (blind) were asked to represent the landscapes they find during their daily trip to school, highlighting their own perceptions, and how the other senses collaborate to the apprehension of the landscape. Each student drew and described his route. According to Kozel (2007, p.120), “the concept of lived world, brought by phenomenology, works as meaningful input to understand mental maps”. Therefore, these maps represent the world, in which the students are inserted.</p><p>Student 1 – Lives in Japeri, state of Rio de Janeiro, 84km far from the Institute. In his drawing, he chose to depict streets close to his house, the Institute, the train service line Central do Brasil and the beaches. He did not place the items in correct order: the drawings were placed side-by-side.</p><p>Student 2 – Lives in Honório Gurgel, a neighborhood in the north region of the city of Rio de Janeiro, 33km far from the Institute. He walks to the train station in Honório Gurgel. He states that he can apprehend and identify the surroundings of his house and the changes that occur throughout the day. In his drawing, he chose to depict the entire path from his house to school, including all details he was able to apprehend. His notion of laterality, space and distance is very keen. This means he understands well the spatial organization of his neighborhood and his path to the Institute.</p><p>Student 3 – Lives in Duque de Caxias, 33km far from the Institute. He wakes up daily at 4h30. He also apprehends the silence and the small number of people and cars on the streets. When he leaves home, he has his mental map ready, indicating how he must proceed, in order to get to the Institute. “When I leave home, I already have my mental map analyzed and planned”. He chose to draw the main points of his path, starting with the train station Central do Brasil, where he arrives by bus, followed by the beaches Aterro do Flamengo, and finally the Institute. He arranged all places according to his commuting.</p><p>The development of the research showed the importance of mental maps for the spatial organization of people with disabilities. It also showed how they use other senses to apprehend their surroundings. After the activity, it was possible to build a model with texture and sound, so that the students could compare their own perceptions with the representation of the path from their houses to the Institute. It is important to use multisensorial didactic materials elaborated according to tactile cartographic techniques, so that visually impaired students have quality throughout their learning process.</p></p>

Play-based learning activities are important programs throughout the world of children's education. Through play, children learn creatively and constructively. This study aims to solve the problem of creativity in early-childhood dance movements with the hope that there will be an increase in aspects of fluency, flexibility and elaboration through play activities related to educational dance. This action research uses an action research method which is carried out in three cycles. The subjects in this study were 19 children aged 5-6 years in Kindergarten in Central Jakarta. Data collection was carried out through observation, interviews, field notes, video documentation and photos. The findings show every child's creativity in dance movements can be improved through playing activities. Increased creativity in dance movements occurs in the aspects of fluency, flexibility, and elaboration. Another important finding, there is an increase in the optimal ability of dance creativity in the third cycle of this action research. The implication from this research is that play activities suitable for learning creative dance in early childhood must be designed as a program that emphasizes aspects of fluency, flexibility, and elaboration. Keywords: Early Childhood, Creativity in dance movements, Play based learning activities References: Bläsing, B., Calvo-Merino, B., Cross, E. S., Jola, C., Honisch, J., & Stevens, C. J. (2012). Neurocognitive control in dance perception and performance. Acta Psychologica, 139(2), 300–308. https://doi.org/10.1016/j.actpsy.2011.12.005 Brehm, M. A., & McNett, L. (2007). Creative dance for learning: The kinesthetic link. McGraw-Hill. Chatoupis, C. (2013). Young children’s divergent movement ability: A study revisited. Early Child Development and Care, 183(1), 92–108. https://doi.org/10.1080/03004430.2012.655728 Cheng, V. M. Y. (2010). Tensions and dilemmas of teachers in creativity reform in a Chinese context. Thinking Skills and Creativity, 5(3), 120–137. https://doi.org/10.1016/j.tsc.2010.09.005 Cheung, R. H. P. (2012). Teaching for creativity: Examining the beliefs of early childhood teachers and their influence on teaching practices. Australasian Journal of Early Childhood, 37(3), 43–52. https://doi.org/10.1177/183693911203700307 Cleland, F. E., & Gallahue, D. L. (1993). Young Children’s Divergent Movement Ability. Perceptual and Motor Skills, 77(2), 535–544. https://doi.org/10.2466/pms.1993.77.2.535 Copple, C., & Bredekamp, S. (2009). Developmentally Appropriate Practice in Early Childhood Programs Serving Children from Birth through Age 8 (3rd ed.). National Association for the Education of Young Children. Craft, A. (2000). Creativity across the primary curriculum: Framing and developing practice. Routledge. Craft, Anna. (2005). Creativity in Schools: Tensions and Dilemmas. Routledge. Cropley, A. (2001). Creativity in education & learning: A guide for teachers and educators. Kogan Page. Doherty, J., & Bailey, R. (2002). Supporting Physical Development and Physical Education in the Early Years (1st edition). Open University Press. Eckhoff, A. (2011). Creativity in the Early Childhood Classroom: Perspectives of Preservice Teachers. Journal of Early Childhood Teacher Education, 32(3), 240–255. https://doi.org/10.1080/10901027.2011.594486 Garaigordobil, M., & Berrueco, L. (2011). Effects of a Play Program on Creative Thinking of Preschool Children. The Spanish Journal of Psychology, 14(2), 608–618. https://doi.org/10.5209/rev_SJOP.2011.v14.n2.9 Gilbert, A. G. (2019). Brain-compatible dance education (Second Edition). Human Kinetics, Inc. Hoffmann, J. D., & Russ, S. W. (2016). Fostering pretend play skills and creativity in elementary school girls: A group play intervention. Psychology of Aesthetics, Creativity, and the Arts, 10(1), 114–125. https://doi.org/10.1037/aca0000039 Hoffmann, J., & Russ, S. (2012). Pretend play, creativity, and emotion regulation in children. Psychology of Aesthetics, Creativity, and the Arts, 6(2), 175–184. https://doi.org/10.1037/a0026299 Hui, A. N. N., Chow, B. W. Y., Chan, A. Y. T., Chui, B. H. T., & Sam, C. T. (2015). Creativity in Hong Kong classrooms: Transition from a seriously formal pedagogy to informally playful learning. Education 3-13, 43(4), 393–403. https://doi.org/10.1080/03004279.2015.1020652 Jeffrey, B. (2006). Creative teaching and learning: Towards a common discourse and practice. Cambridge Journal of Education, 36(3), 399–414. https://doi.org/10.1080/03057640600866015 Karaca, N. H., Uzun, H., & Metin, Ş. (2020). The relationship between the motor creativity and peer play behaviors of preschool children and the factors affecting this relationship. Thinking Skills and Creativity, 38, 100716. https://doi.org/10.1016/j.tsc.2020.100716 Karpati, F. J., Giacosa, C., Foster, N. E. V., Penhune, V. B., & Hyde, K. L. (2016). Sensorimotor integration is enhanced in dancers and musicians. Experimental Brain Research, 234(3), 893–903. https://doi.org/10.1007/s00221-015-4524-1 Kaufman, J. C., & Beghetto, R. A. (2009). Beyond Big and Little: The Four C Model of Creativity. Review of General Psychology, 13(1), 1–12. https://doi.org/10.1037/a0013688 Kemmis, S., McTaggart, R., & Nixon, R. (2014). The Action Research Planner. Springer Singapore. https://doi.org/10.1007/978-981-4560-67-2 Kuhn, J.-T., & Holling, H. (2009). Exploring the nature of divergent thinking: A multilevel analysis. Thinking Skills and Creativity, 4(2), 116–123. https://doi.org/10.1016/j.tsc.2009.06.004 Lai Keun, L., & Hunt, P. (2006). Creative dance: Singapore children’s creative thinking and problem‐solving responses. Research in Dance Education, 7(1), 35–65. https://doi.org/10.1080/14617890600610661 Leff, S. S., Costigan, T., & Power, T. J. (2004). Using participatory research to develop a playground-based prevention program. Journal of School Psychology, 42(1), 3–21. https://doi.org/10.1016/j.jsp.2003.08.005 Lobo, Y. B., & Winsler, A. (2006). The Effects of a Creative Dance and Movement Program on the Social Competence of Head Start Preschoolers. Social Development, 15(3), 501–519. https://doi.org/10.1111/j.1467-9507.2006.00353.x Lucas, B. (2001). Creative teaching, teaching creativity and creative learning (A. Craft, B. Jeffrey&M. Leibling (Eds),). Continuum. Marinšek, M., & Denac, O. (2020). The Effects of an Integrated Programme on Developing Fundamental Movement Skills and Rhythmic Abilities in Early Childhood. Early Childhood Education Journal, 48(6), 751–758. https://doi.org/10.1007/s10643-020-01042-8 Miles, M. B., Huberman, A. M., & Saldaña, J. (2014). Qualitative data analysis: A methods sourcebook (Third edition). SAGE Publications, Inc. Pürgstaller, E. (2021). Assessment of Creativity in Dance in Children: Development and Validation of a Test Instrument. Creativity Research Journal, 33(1), 33–46. https://doi.org/10.1080/10400419.2020.1817694 Repp, B. H., & Su, Y.-H. (2013). Sensorimotor synchronization: A review of recent research (2006–2012). Psychonomic Bulletin & Review, 20(3), 403–452. https://doi.org/10.3758/s13423-012-0371-2 Rudowicz, E., & Hui, A. (2000). Hong Kong Chinese People’s View of Creativity. 16. Runco, M. A. (2003). Education for Creative Potential. Scandinavian Journal of Educational Research, 47(3), 317–324. https://doi.org/10.1080/00313830308598 Runco, M. A., & Acar, S. (2012). Divergent Thinking as an Indicator of Creative Potential. Creativity Research Journal, 24(1), 66–75. https://doi.org/10.1080/10400419.2012.652929 Saracho, O. (2002). Young Children’s Creativity and Pretend Play. 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Disciplinary behavior increases children's responsibility and self-control skills by encouraging mental, emotional and social growth. This behavior is also related to school readiness and future academic achievement. This study aims to look at read aloud with the media of large books in improving disciplinary behavior during early childhood. Participants were 20 children aged 5-6 years. By using qualitative methods as a classroom action research, data collection was carried out by observation, field notes, and documentation. The results of pre-cycle data showed that the discipline behavior of children increased to 42.6%. In the first cycle of intervention learning with ledger media, the percentage of children's discipline behavior increased to 67.05%, and in the second cycle, it increased again to 80.05%. Field notes found an increase in disciplinary behavior because children liked the media which was not like books in general. However, another key to successful behavior of the big book media story. Another important finding is the teacher's ability to tell stories to students or read books in a style that fascinates children. The hope of this intervention is that children can express ideas, insights, and be able to apply disciplinary behavior in their environment. Keywords: Early Discipline Behavior, Read aloud, Big Book Media References Aksoy, P. (2020). The challenging behaviors faced by the preschool teachers in their classrooms, and the strategies and discipline approaches used against these behaviors: The sample of United States. Participatory Educational Research, 7(3), 79–104. https://doi.org/10.17275/per.20.36.7.3 Anderson, K. L., Weimer, M., & Fuhs, M. W. (2020). Teacher fidelity to Conscious Discipline and children’s executive function skills. Early Childhood Research Quarterly, 51, 14–25. https://doi.org/10.1016/j.ecresq.2019.08.003 Andriana, E., Syachruroji, A., Alamsyah, T. P., & Sumirat, F. 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Foreign Language Annals, 39(3), 487–506. https://doi.org/doi:10.1111/j.1944-9720.2006.tb02901.x Davis, J. R. (2017). From Discipline to Dynamic Pedagogy: A Re-conceptualization of Classroom Management. Berkeley Review of Education, 6. https://doi.org/10.5070/b86110024 Eagle, S. (2012). Computers & Education Learning in the early years : Social interactions around picturebooks , puzzles and digital technologies. Computers & Education, 59(1), 38–49. https://doi.org/10.1016/j.compedu.2011.10.013 Farrant, B. M., & Zubrick, S. R. (2012). Early vocabulary development: The importance of joint attention and parent-child book reading. First Language, 32(3), 343–364. https://doi.org/10.1177/0142723711422626 Galini, R., & Kostas, K. (2014). Practices of Early Childhood Teachers in Greece for Managing Behavior Problems: A Preliminary Study. Procedia - Social and Behavioral Sciences, 152, 784–789. https://doi.org/10.1016/j.sbspro.2014.09.321 Ho, J., Grieshaber, S. J., & Walsh, K. (2017). Discipline and rules in four Hong Kong kindergarten classrooms : a qualitative case study. International Journal of Early Years Education, 1–15. https://doi.org/10.1080/09669760.2017.1316242 Hoffman, L. L., Hutchinson, C. J., & Reiss, E. (2005). Training teachers in classroom management: Evidence of positive effects on the behavior of difficult children. In The Journal of the Southeastern Regional Association of Teacher Educators (Vol. 14, Issue 1, pp. 36–43). Iraklis, G. (2020). Classroom (in) discipline: behaviour management practices of Greek early childhood educators. Education 3-13, 0(0), 1–9. https://doi.org/10.1080/03004279.2020.1817966 Kalb, G., & van Ours, J. C. (2014). Reading to young children: A head-start in life? Economics of Education Review, 40, 1–24. https://doi.org/doi:10.1016/j.econedurev.2014.01.002 Kemmis, S., & McTaggart, R. (1988). The action research planner (3rd ed.). Deakin University Press. Ledger, S., & Merga, M. K. (2018). Reading aloud: Children’s attitudes toward being read to at home and at school. Australian Journal of Teacher Education, 43(3), 124–139. https://doi.org/10.14221/ajte.2018v43n3.8 Longstreth, S., Brady, S., & Kay, A. (2015). Discipline Policies in Early Childhood Care and Education Programs : Building an Infrastructure for Social and Academic Success Discipline Policies in Early Childhood Care and Education Programs : Building an Infrastructure. Early Education and Development, 37–41. https://doi.org/10.1080/10409289.2011.647608 Mahayanti, N. W. S., Padmadewi, N. N., & Wijayanti, L. P. A. (2017). Coping With Big Classes: Effect of Big Book in Fourth Grade Students Reading Comprehension. International Journal of Language and Literature, 1(4), 203. https://doi.org/10.23887/ijll.v1i4.12583 Martha Efirlin, Fadillah, M. (2012). Penanaman Perilaku Disiplin Anak Usia 5-6 Tahun di TK Primanda Untan Pontianak. Pendidikan Anak Usia Dini, 1–10. Merga, Margaret K. (2017). Becoming a reader: Significant social influences on avid book readers. School Library Research, 20(Liu 2004). Merga, Margaret Kristin. (2015). “She knows what I like”: Student-generated best-practice statements for encouraging recreational book reading in adolescents. Australian Journal of Education, 59(1), 35–50. https://doi.org/10.1177/0004944114565115 Merga, Margaret Kristin. (2017). Interactive reading opportunities beyond the early years: What educators need to consider. Australian Journal of Education, 61(3), 328–343. https://doi.org/10.1177/0004944117727749 Milles;, M. B., & Huberman, M. (2014). Qualitative Data Analysis. Sage Publications. Moberly, D. A., Waddle, J. L., & Duff, R. E. (2014). Journal of Early Childhood Teacher Education The use of rewards and punishment in early childhood classrooms The use of rewards and punishment in early childhood classrooms. Journal of Early Childhood Teacher Education, 37–41. https://doi.org/10.1080/1090102050250410 Mol, S. E., & Bus, A. G. (2011). To Read or Not to Read: A Meta-Analysis of Print Exposure From Infancy to Early Adulthood. Psychological Bulletin, 137(2), 267–296. https://doi.org/10.1037/a0021890 Pegg, L. A., & Bartelheim, F. J. (2011). Effects of daily read-alouds on students’ sustained silent reading. Current Issues in Education, 14(2), 1–8. Penno, J. F., Wilkinson, I. A. G., & Moore, D. W. (2002). Vocabulary acquisition from teacher explanation and repeated listening to stories: Do they overcome the Matthew effect? Journal of Educational Psychology, 94(1), 23–33. https://doi.org/10.1037/0022-0663.94.1.23 Septyaningrum, A., & Mas’udah. (2015). Pengaruh metode bercerita berbasis dongeng terhadap kedisiplinan anak. Fakultas Ilmu Pendidikan, 1–5. Swanson, E., Vaughn, S., Wanzek, J., Petscher, Y., Heckert, J., Cavanaugh, C., Kraft, G., & Tackett, K. (2011). A synthesis of read-aloud interventions on early reading outcomes among preschool through third graders at risk for reading difficulties. 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Language skills are significant predictors of early academic and social-emotional outcomes of children and are important predictors of school readiness. This study aims to improve children's language skills through the application of mind mapping learning methods. This classroom action research used Kemmis and Taggart's cycle model. The research subjects were 12 children in group B consisting of eight boys and four girls. The data was collected through observation, interviews, and documentation with the validity of the data using source triangulation and method triangulation. This research uses data analysis techniques in the form of data condensation, data presentation, and drawing conclusions. The results showed that the children's language skills through the application of the mind mapping method in the first cycle were 75%, and in the second cycle had increased to 92%. Based on the results of teacher observations in the implementation of cycle I, the children's language skills obtained a percentage value of 61.5%, and in cycle II increased to 92.3%. While the results of observations of children's activities in the implementation of the first cycle obtained a percentage of 54%, and in the second cycle, it increased to 85%. This study found that the teacher's assessment of this mind mapping method was an easy method to understand so that it was easy to apply in classroom learning. The implication of this research is that it is necessary to carry out further research on the application of the mind mapping method for other aspects of development. Keywords: Early Childhood, language Skills, Mind Mapping Learning Methods References: Abi-El-Mona, I., & Adb-El-Khalick, F. (2008). The influence of mind mapping on eighth graders’ science achievement. 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IntroductionThe Vietnamese Home Falls and Accidents Screening Tool (HOME FAST) was developed to measure the number of home hazards present in the homes of older Vietnamese people and the risk of falls.MethodsThe HOME FAST and the HOME FAST manual were translated into Vietnamese by an independent translator and underwent backward translation by local health professionals into English to evaluate the accuracy of the translation. A panel of 14 Vietnamese health professionals evaluated the validity of the HOME FAST translation and rated the clarity and cultural relevance of each item. Ratings were evaluated using the content validity index (CVI). Reliability in ratings of the HOME FAST was evaluated using intra-class correlations (ICC), and ratings took place within the homes of two older Vietnamese people by six assessors.ResultsIn all, 22 out of 25 Vietnamese HOME FAST items were considered to have met content validity standards using the CVI. The ICC for home visit one was 0.94 (95% CI 0.87–0.97) and for home visit two was ICC 0.95 (95% CI 0.91–0.98) indicating high reliability.Discussion and conclusionBathroom items showed the most inconsistency in ratings indicating cultural differences in bathing activities. Descriptors of HOME FAST items will be reviewed for use in Vietnam to account for cultural and environmental differences. A larger pilot study is planned with older people living in the community in Vietnam to include calendar ascertainment of falls to determine if home hazards are associated with falling.

Abstract Disclosure: C.L. Roth: Other; Self; Study funding from Rhythm Pharmaceuticals, Inc. A.H. Shoemaker: Advisory Board Member; Self; Rhythm Pharmaceuticals, Inc., Saniona. Other; Self; Study funding from Rhythm Pharmaceuticals, Inc. M. Gottschalk: Advisory Board Member; Self; Rhythm Pharmaceuticals, Inc. Consulting Fee; Self; Rhythm Pharmaceuticals, Inc. Other; Self; Study funding from Rhythm Pharmaceuticals, Inc. J.L. Miller: Other; Self; Study funding from Rhythm Pharmaceuticals, Inc. G. Yuan: Employee; Self; Rhythm Pharmaceuticals, Inc. Stock Owner; Self; Rhythm Pharmaceuticals, Inc. S. Malhotra: Employee; Self; Rhythm Pharmaceuticals, Inc. Stock Owner; Self; Rhythm Pharmaceuticals, Inc. C. Scimia: Employee; Self; Rhythm Pharmaceuticals, Inc. Stock Owner; Self; Rhythm Pharmaceuticals, Inc. S. McCormack: None. M.J. Abuzzahab: Consulting Fee; Self; Pfizer, Inc., Rhythm Pharmaceuticals, Inc., Consynance. Other; Self; Study funding from Rhythm Pharmaceuticals, Inc., Ascendis, NovoNordisk, Levo Pharmaceuticals, Lumos, Saniona, and Soleno. Background: Damage to the hypothalamus via physical trauma, tumors, surgical resection, and/or radiotherapy can impair the melanocortin signaling pathway and reduce energy expenditure, potentially leading to hypothalamic obesity, a severe form of obesity with no current specific therapeutic option. Recently, the selective melanocortin-4 receptor agonist setmelanotide demonstrated reduction in weight and hunger for patients with hypothalamic obesity who were treated in a Phase 2 trial. We describe the study design of a planned double-blind, randomized, placebo-controlled, Phase 3 trial of setmelanotide in patients with hypothalamic obesity. Methods: Approximately 120 patients will be enrolled across ≤35 sites globally. Eligibility criteria include age ≥4 years with documented evidence of acquired hypothalamic obesity with associated weight gain before and/or with tumor treatment and body mass index (BMI) ≥30 kg/m2 (≥18 years) or BMI ≥95th percentile (≥4 to &lt;18 years). Key exclusion criteria include diagnosis of syndromic obesity, weight or BMI loss &gt;2% based on age in the prior 3 months, bariatric surgery within the past 2 years, glycated hemoglobin &gt;11.0%, and glomerular filtration rate &lt;30 mL/min/1.73 m2. Patients will be randomized 2:1 and stratified by age to receive setmelanotide or placebo. Setmelanotide will be titrated over 2-8 weeks to a maximum daily subcutaneous dose of 1.5-3.0 mg based on age and weight. Double-blind treatment will continue for up to 60 weeks, with visits (in-clinic, at-home, or telehealth) at Weeks 20, 28, 36, 44, and 52 and at an end-of-treatment clinic visit at Week 60. The primary endpoint is the mean percent change in BMI after 52 weeks of treatment for setmelanotide versus placebo. Key secondary endpoints after 52 weeks are the proportion of patients aged ≥18 years with ≥5% reduction in BMI, proportion of patients aged &lt;18 years with ≥0.2-point reduction in BMI Z score, and mean change in weekly average of the daily “most hunger” score in patients aged ≥12 years. Additional secondary endpoints include proportion of patients achieving ≥2-point reduction in weekly average of the daily maximal hunger score, Symptoms of Hyperphagia total score, additional weight-related parameters, and quality of life outcomes. Exploratory endpoints include change after 52 weeks in physical activity (measured by acDetigraphy), fatigue (via Functional Assessment of Chronic Illness Therapy [FACIT]-Fatigue©/Peds FACIT-F© scale), Impacts of Hyperphagia score, caregiver health status (via EuroQol-5-Dimension scale), cardiometabolic parameters, and waist circumference. Safety will be assessed by the frequency and severity of adverse events. Conclusions: This Phase 3 trial designed to assess the efficacy and safety of setmelanotide for weight loss and hunger reduction in patients ≥4 years of age with acquired hypothalamic obesity is planned to initiate in early 2023. Presentation: Friday, June 16, 2023

AbstractBackgroundAlzheimer’s disease (AD) is associated with impaired sleep that worsens over disease progression. To explore the circadian effects on memory consolidation and underlying neurophysiology in young versus old healthy volunteers versus patients with AD, we used two wearables in a repeated/longitudinal at‐home clinical paradigm that captured key behavioral and electrophysiologic responses after sleep and after daytime activity.MethodA participant home‐administered, behavioral, and event‐related potential (ERP) through electroencephalogram (EEG) platform (Cumulus Neuroscience) is administered over a two‐week period to healthy younger adults, healthy older adults, and older adult patients with AD. Participants engaged in behavioral (image recognition) testing coupled with EEG/ERP recordings twice daily ‐ once in the morning following approx. 12 hrs of sleep/rest and once after at end of day before retiring activity. Two‐minutes of resting state EEG/ERPs began each session, for twenty‐two total sessions. Reports of sleep, together with smart watch actigraphy (Empatica, Inc), are used to estimate the duration and intensity of the rest/sleep period versus daytime activity. This novel protocol explores whether each wearable generates data that is sufficiently reproducible and sensitive to track and interpret changes in episodic memory consistent with known changes expected based on age and AD status.ResultWe report on feasibility of implementation of the experimental paradigm and whether the sensors employed reliably yield interpretable data. We share data on recruitment rates and subject feedback regarding tolerability of Cumulus Headset and Empatica watch.ConclusionThe home‐based experimental paradigm is well‐tolerated with excellent adherence to the study design. Both sensors yielded experimental datasets of similar quality to those obtained in in‐house studies. Planned analyses focus on establishing whether this experimental paradigm yields data with sufficient sensitivity and reproducibility to confirm past observations regarding the effect of age and AD on memory consolidation.

This study entitled “Entrepreneurial Intention among Community Science College Students: Determinants towards entrepreneurship” aimed at profiling entrepreneurship among 100 graduating classstudents at I.C. College of Home Science and identify determinants of their entrepreneurial intentions. The study used survey design andcollected information through structured questionnaire from prospective graduates.The experiment on determinants of entrepreneurial intention among community science students revealed that the level of most (64.0%) of the student’s personal attitude was in the medium category. Additionally, 78.0 per cen of the students valued subjective norms at a value of medium level while 53.0 per cent student’s perceived control in entrepreneurship was in the high category. This means that students already have an intention in entrepreneurship indicated by the existence of intention, willingness, and efforts to run a business. The data observed positive correlation of .207 between age and planned behaviour of the students that means that older students had better scores on planned behaviour. Similarly the students with high level of entrepreneurial background, entrepreneurial aspiration and exposure to entrepreneurship training had higher attitude towards behaviour, subjective norms and perceived behavioural control that results in higher entrepreneurial intention to create jobs. Between the three variables, student’s subjective norm is the most significant variable to predict their entrepreneurial intention.

In August 2015, Google reorganized its various interests as a conglomerate called Alphabet Inc. Under the new umbrella, Google’s search, data aggregation, and advertising subsidiaries, were joined by Sidewalk Lab and its suite of urban products: high-speed broadband services, Android Pixel2 phone, mobile mapping, autonomous cars, artificial intelligence, smart homes, and all the data captured therein. The City of Toronto’s recent award to Alphabet’s Sidewalk Lab for design services has sparked a heated controversy among urban planners and citizens alike. Toronto’s decision not only signals a different model of professional practice, but it also represents a conceptual shift away from citizen to urban consumer. By engaging a private technology company, one that passively captures data on its customers and then re-sales that data to third parties, Toronto’s smart city points to a significant change in the understanding and practice of contemporary urban planning and design. Acknowledging the city as a site of disciplinary disruption, this paper introduces Bratton’s stack theory as a way to understand networked urbanism more generally, and Waterfront Toronto specifically. We build on Bratton’s position by closely examining twenty-first century histories and anthropologies related to the Internet, privacy, and the dominance of big data. Our principal concern is with the transformation of personal and environmental data into an economic resource. Seen through that particular lens, we argue that Toronto’s smart city has internalized relations of colonization, whereby the economic objectives of a multinational technology company take on new configurations at a local level of human (and non-human) information extraction – thereby restructuring not only public land, but also everyday life into a zone of unmitigated consumption.

The Centers for Disease Control and Prevention (CDC) National Diabetes Statistics Report 2020 emphasized that diabetes is an overwhelming national problem and especially prevalent in rural areas. Of the 12.3 million Californians with diabetes or prediabetes, only 1.23 million have been diagnosed, and 45% of those haven’t received diabetes education. Rural Californians have lower per capita income compared to urban Californians, equating to higher poverty rates (U.S. Department of Agriculture, 2021) , and they often face social service inaccessibility. Studies show that populations with low income have higher rates of unhealthy behaviors and are more likely to develop diabetes (Hsu et. al, 2012) . Revamping standardized diabetes prevention and education via a telehealth model to reach those in rural California has shown significant results. My Diabetes Tutor (MDT) , as part of a DSMES telehealth program, has provided a convenient and effective way to access diabetes education (DE) in rural areas and beyond. MDT delivers education for diabetes, gestational diabetes, prediabetes, and obesity in several languages from Certified Diabetes Care and Education Specialists. People have direct access to DE from home or a kiosk at their provider/health plan offices. Topics range from diabetes basics, nutrition, medication comprehension, emotional well-being, and reducing the risk of possible complications to understanding the use of insulin pumps and continuous glucose monitoring. People using MDT have shown an average A1C reduction of 1.2%, LDL decrease of 9.4 points, and improvements in blood pressure, weight, and self-care behaviors. The technology to deliver MDT DSMES was developed in collaboration with CharmHealth. MDT satisfies a great need to make DE accessible in rural California, which sets the stage for MDT’s planned national expansion, and to replicate this model to increase access to DE for people hospitalized with diabetes via virtual inpatient DE services. Disclosure P. Sahasranam: None. F. Gavini: None. S. Sodhi: None. T. Garnero: None. J. Thompson: Employee; Vida Health. Other Relationship; DayTwo Inc. C. M. Salinas: None. S. S. Baxter: None.

Stand-up is a global phenomenon. It is Australia’s most significant form of advocatorial theatre and a major platform for challenging stigma and prejudice. In the twenty-first century, Australian stand-up is transforming into a more culturally diverse form and extending the spectrum of material addressing human rights. Since the 1980s Australian stand-up routines have moved beyond the old colonial targets of England and America, and Indigenous comics such as Kevin Kopinyeri, Andy Saunders, and Shiralee Hood have gained an established following. Additionally, the turn to Asia is evident not just in trade agreements and the higher education market but also in cultural exchange and in the billing of emerging Asian stand-ups at mainstream events. The major cultural driver for stand-up is the Melbourne International Comedy Festival (MICF), Australia’s largest cultural event, now over 30 years old, and an important site for dissecting constructs of democracy and nationhood. As John McCallum has observed, popular humour in post-World War II Australia drew on widespread feelings of “displacement, migration and otherness—resonant topics in a country of transplanted people and a dispossessed indigenous population arguing over a distinct Australian identity” (205–06). This essay considers the traditional comic strategies of first and second generation immigrant stand-ups in Australia and compares them with the new wave of post 9/11 Asian-Australian and Middle-Eastern-Australian stand-ups whose personas and interrogations are shifting the paradigm. Self-identifying Muslim stand-ups challenge myths of dominant Australian identity in ways which many still find confronting. Furthermore, the theories of incongruity, superiority, and psychological release re-rehearsed in traditional humour studies, by figures such as Palmer (1994) and Morreall (2009), are predicated on models of humour which do not always serve live performance, especially stand-up with its relational dependence on audience interaction.Stand-ups who immigrated to Australia as children or whose parents immigrated and struggled against adversity are important symbols both of the Australian comedy industry and of a national self-understanding of migrant resilience and making good. Szubanski and Berger hail from earlier waves of European migrants in the 1950s and 1960s. Szubanski has written eloquently of her complex Irish-Polish heritage and documented how the “hand-me-down trinkets of family and trauma” and “the culture clash of competing responses to calamity” have been integral to the development of her comic success and the making of her Aussie characters (347). Rachel Berger, the child of Polish holocaust survivors, advertises and connects both identities on her LinkedIn page: “After 23 years as a stand-up comedian, growing up with Jewish guilt and refugee parents, Rachel Berger knows more about survival than any idiot attending tribal council on reality TV.”Anh Do, among Australia’s most famous immigrant stand-ups, identifies as one of the Vietnamese “boat people” and arrived as a toddler in 1976. Do’s tale of his family’s survival against the odds and his creation of a persona which constructs the grateful, happy immigrant clown is the staple of his very successful routine and increasingly problematic. It is a testament to the power of Do’s stand-up that many did not perceive the toll of the loss of his birth country; the grinding poverty; and the pain of his father’s alcoholism, violence, and survivor guilt until the publication of Do’s ironically titled memoir The Happiest Refugee. In fact, the memoir draws on many of the trauma narratives that are still part of his set. One of Do’s most legendary routines is the story of his family’s sea journey to Australia, told here on ABC1’s Talking Heads:There were forty of us on a nine metre fishing boat. On day four of the journey we spot another boat. As the boat gets closer we realise it’s a boatload of Thai pirates. Seven men with knives, machetes and guns get on our boat and they take everything. One of the pirates picks up the smallest child, he lifts up the baby and rips open the baby’s nappy and dollars fall out. And the pirate decides to spare the kid’s life. And that’s a good thing cos that’s my little brother Khoa Do who in 2005 became Young Australian of the Year. And we were saved on the fifth day by a big German merchant ship which took us to a refugee camp in Malaysia and we were there for around three months before Australia says, come to Australia. And we’re very glad that happened. So often we heard Mum and Dad say—what a great country. How good is this place? And the other thing—kids, as you grow up, do as much as you can to give back to this great country and to give back to others less fortunate.Do’s strategy is apparently one of genuflection and gratitude, an adoption of what McCallum refers to as an Australian post-war tradition of the comedy of inadequacy and embarrassment (210–14). Journalists certainly like to bill Do as the happy clown, framing articles about him with headlines like Rosemary Neill’s “Laughing through Adversity.” In fact, Do is direct about his gallows humour and his propensity to darkness: his humour, he says, is a means of countering racism, of “being able to win people over who might have been averse to being friends with an Asian bloke,” but Neill does not linger on this, nor on the revelation that Do felt stigmatised by his refugee origins and terrified and shamed by the crippling poverty of his childhood in Australia. In The Happiest Refugee, Do reveals that, for him, the credibility of his routines with predominantly white Australian audiences lies in the crafting of himself as an “Aussie comedian up there talking about his working-class childhood” (182). This is not the official narrative that is retold even if it is how Do has endeared himself to Australians, and ridding himself of the happy refugee label may yet prove difficult. Suren Jayemanne is well known for his subtle mockery of multiculturalist rhetoric. In his 2016 MICF show, Wu-Tang Clan Name Generator, Jayemanne played on the supposed contradiction of his Sri Lankan-Malaysian heritage against his teenage years in the wealthy suburb of Malvern in Melbourne, his private schooling, and his obsession with hip hop and black American culture. Jayemanne’s strategy is to gently confound his audiences, leading them slowly up a blind alley. He builds up a picture of how to identify Sri Lankan parents, supposedly Sri Lankan qualities such as an exceptional ability at maths, and Sri Lankan employment ambitions which he argues he fulfilled in becoming an accountant. He then undercuts his story by saying he has recently realised that his suburban background, his numerical abilities, his love of black music, and his rejection of accountancy in favour of comedy, in fact prove conclusively that he has, all along, been white. He also confesses that this is a bruising disappointment. Jayemanne exposes the emptiness of the conceits of white, brown, and black and of invented identity markers and plays on his audiences’ preconceptions through an old storyteller’s device, the shaggy dog story. The different constituencies in his audiences enjoy his trick equally, from quite different perspectives.Diana Nguyen, a second generation Vietnamese stand-up, was both traumatised and politicised by Pauline Hanson when she was a teenager. Hanson described Nguyen’s community in Dandenong as “yellow Asian people” (Filmer). Nguyen’s career as a community development worker combating racism relates directly to her activity as a stand-up: migrant stories are integral to Australian history and Nguyen hypothesises that the “Australian psyche of being invaded or taken over” has reignited over the question of Islamic fundamentalism and expresses her concern to Filmer about the Muslim youths under her care.Nguyen’s alarm about the elision of Islamic radicalism with Muslim culture drives an agenda that has led the new generation of self-identified Muslim stand-ups since 9/11. This post 9/11 world is described by Wajahat as gorged with “exaggerated fear, hatred, and hostility toward Islam and Muslim [. . . ] and perpetuated by negative discrimination and the marginalisation and exclusion of Muslims from social, political, and civic life in western societies.” In Australia, Aamer Rahman, Muhamed Elleissi, Khaled Khalafalla, and Nazeem Hussain typify this newer, more assertive form of second generation immigrant stand-up—they identify as Muslim (whether religious or not), as brown, and as Australian. They might be said to symbolise a logical response to Ghassan Hage’s famous White Nation (1998), which argues that a white supremacism underlies the mindset of the white elite in Australia. Their positioning is more nuanced than previous generations of stand-up. Nazeem Hussain’s routines mark a transformation in Australian stand-up, as Waleed Aly has argued: “ethnic comedy” has hitherto been about the parading of stereotypes for comfortable, mainstream consumption, about “minstrel characters” [. . .] but Hussain interrogates his audiences in every direction—and aggravates Muslims too. Hussain’s is the world of post 9/11 Australian Muslims. It’s about more than ethnic stereotyping. It’s about being a consistent target of political opportunism, where everyone from the Prime Minister to the Foreign Minister to an otherwise washed-up backbencher with a view on burqas has you in their sights, where bombs detonate in Western capitals and unrelated nations are invaded.Understandably, a prevalent theme among the new wave of Muslim comics, and not just in Australia, is the focus on the reading of Muslims as manifestly linked with Islamic State (IS). Jokes about mistaken identity, plane crashes, suicide bombing, and the Koran feature prominently. English-Pakistani Muslim, Shazia Mirza, gained comedy notoriety in the UK in the wake of 9/11 by introducing her routine with the words: “My name’s Shazia Mirza. At least that’s what it says on my pilot’s licence” (Bedell). Stand-ups Negin Farsad, Ahmed Ahmed, and Dean Obeidalla are all also activists challenging prevailing myths about Islam, skin colour and terrorism in America. Egyptian-American Ahmed Ahmed acquired prominence for telling audiences in the infamous Axis of Evil Comedy Tour about how his life had changed much for the worse since 9/11. Ahmed Ahmed was the alias used by one of Osama Bin Laden’s devotees and his life became on ongoing struggle with anti-terrorism officials doing security checks (he was once incarcerated) and with the FBI who were certain that the comedian was among their most wanted terrorists. Similarly, Obeidalla, an Italian-Palestinian-Muslim, notes in his TEDx talk that “If you have a Muslim name, you are probably immune to identity theft.” His narration of a very sudden experience of becoming an object of persecution and of others’ paranoia is symptomatic of a shared understanding of a post 9/11 world among many Muslim comics: “On September 10th 2001 I went to bed as a white American and I woke up an Arab,” says Obeidalla, still dazed from the seismic shift in his life.Hussain and Khalafalla demonstrate a new sophistication and directness in their stand-up, and tackle their majority white audiences head-on. There is no hint of the apologetic or deferential stance performed by Anh Do. Many of the jokes in their routines target controversial or taboo issues, which up until recently were shunned in Australian political debate, or are absent or misrepresented in mainstream media. An Egyptian-Australian born in Saudi Arabia, Khaled Khalafalla arrived on the comedy scene in 2011, was runner-up in RAW, Australia’s most prestigious open mic competition, and in 2013 won the best of the Melbourne International Comedy Festival for Devious. Khalafalla’s shows focus on racist stereotypes and identity and he uses a range of Middle Eastern and Indian accents to broach IS recruitment, Muslim cousin marriages, and plane crashes. His 2016 MICF show, Jerk, was a confident and abrasive routine exploring relationships, drug use, the extreme racism of Reclaim Australia rallies, controversial visa checks by Border Force’s Operation Fortitude, and Islamophobia. Within the first minute of his routine, he criticises white people in the audience for their woeful refusal to master Middle Eastern names, calling out to the “brown woman” in the audience for support, before lining up a series of jokes about the (mis)pronunciation of his name. Khalafalla derives his power on stage by what Oliver Double calls “uncovering.” Double contends that “one of the most subversive things stand-up can do is to uncover the unmentionable,” subjects which are difficult or impossible to discuss in everyday conversation or the broadcast media (292). For instance, in Jerk Khalafalla discusses the “whole hating halal movement” in Australia as a metaphor for exposing brutal prejudice: Let me break it down for you. Halal is not voodoo. It’s just a blessing that Muslims do for some things, food amongst other things. But, it’s also a magical spell that turns some people into fuckwits when they see it. Sometimes people think it’s a thing that can get stuck to your t-shirt . . . like ‘Oh fuck, I got halal on me’ [Australian accent]. I saw a guy the other day and he was like Fuck halal, it funds terrorism. And I was like, let me show you the true meaning of Islam. I took a lamb chop out of my pocket and threw it in his face. And, he was like Ah, what was that? A lamb chop. Oh, I fucking love lamb chops. And, I say you fool, it’s halal and he burst into flames.In effect, Khalafalla delivers a contemptuous attack on the white members of his audience, but at the same time his joke relies on those same audience members presuming that they are morally and intellectually superior to the individual who is the butt of the joke. Khalafalla’s considerable charm is a help in this tricky send-up. In 2015 the Australian Department of Defence recognised his symbolic power and invited him to join the Afghanistan Task Force to entertain the troops by providing what Doran describes as “home-grown Australian laughs” (7). On stage in Australia, Khalafalla constructs a persona which is an outsider to the dominant majority and challenges the persecution of Muslim communities. Ironically, on the NATO base, Khalafalla’s act was perceived as representing a diverse but united Australia. McCallum has pointed to such contradictions, moments where white Australia has shown itself to be a “culture which at first authenticates emigrant experience and later abrogates it in times of defiant nationalism” (207). Nazeem Hussain, born in Australia to Sri Lankan parents, is even more confrontational. His stand-up is born of his belief that “comedy protects us from the world around us” and is “an evolutionary defence mechanism” (8–9). His ground-breaking comedy career is embedded in his work as an anti-racism activist and asylum seeker supporter and shaped by his second-generation migrant experiences, law studies, community youth work, and early mentorship by American Muslim comic trio Allah Made Me Funny. He is well-known for his pioneering television successes Legally Brown and Salam Café. In his stand-up, Hussain often dwells witheringly on the failings and peculiarities of white people’s attempts to interact with him. Like all his routines, his sell-out show Fear of the Brown Planet, performed with Aamer Rahman from 2004–2008, explored casual, pathologised racism. Hussain deliberately over-uses the term “white people” in his routines as a provocation and deploys a reverse racism against his majority white audiences, knowing that many will be squirming. “White people ask me how can Muslims have fun if they don’t drink? Muslims have fun! Of course we have fun! You’ve seen us on the news.” For Hussain stand-up is “fundamentally an art of protest,” to be used as “a tool by communities and people with ideas that challenge and provoke the status quo with a spirit of counterculture” (Low 1–3). His larger project is to humanise Muslims to white Australians so that “they see us firstly as human beings” (1–3). Hussain’s 2016 MICF show, Hussain in the Membrane, both satirised media hype and hysterical racism and pushed for a better understanding of the complex problems Muslim communities face in Australia. His show also connected issues to older colonial traditions of racism. In a memorable and beautifully crafted tirade, Hussain inveighed against the 2015 Bendigo riots which occurred after local Muslims lodged an application to Bendigo council to build a mosque in the sleepy Victorian town. [YELLING in an exaggerated Australian accent] No we don’t want Muslims! NO we don’t want Muslims—to come invade Bendigo by application to the local council! That is the most bureaucratic invasion of all times. No place in history has been invaded by lodging an application to a local council. Can you see ISIS running around chasing town planners? Of course not, Muslims like to wait 6–8 months to invade! That’s a polite way to invade. What if white people invaded that way? What a better world we’d be living in. If white people invaded Australia that way, we’d be able to celebrate Australia Day on the same day without so much blood on our hands. What if Captain Cook came to Australia and said [in a British accent] Awe we would like to apply to invade this great land and here is our application. [In an Australian accent] Awe sorry, mate, rejected, but we’ll give you Bendigo.As Waleed Aly sees it, the Australian cultural majority is still “unused to hearing minorities speak with such assertiveness.” Hussain exposes “a binary world where there’s whiteness, and then otherness. Where white people are individuals and non-white people (a singular group) are not” (Aly). Hussain certainly speaks as an insider and goes so far as recognising his coloniser’s guilt in relation to indigenous Australians (Tan). Aly well remembers the hate mail he and Hussain received when they worked on Salam Café: “The message was clear. We were outsiders and should behave as such. We were not real Australians. We should know our place, as supplicants, celebrating the nation’s unblemished virtue.” Khalafalla, Rahman, Elleissi, and Hussain make clear that the new wave of comics identify as Muslim and Australian (which they would argue many in the audiences receive as a provocation). They have zero tolerance of racism, their comedy is intimately connected with their political activism, and they have an unapologetically Australian identity. No longer is it a question of whether the white cultural majority in Australia will anoint them as worthy and acceptable citizens, it is a question of whether the audiences can rise to the moral standards of the stand-ups. The power has been switched. For Hussain laughter is about connection: “that person laughs because they appreciate the point and whether or not they accept what was said was valid isn’t important. What matters is, they’ve understood” (Low 5). ReferencesAhmed, Ahmed. “When It Comes to Laughter, We Are All Alike.” TedXDoha (2010). 16 June 2016 <http://tedxtalks.ted.com/video/TEDxDoha-Ahmed-Ahmed-When-it-Co>.Aly, Waleed. “Comment.” Sydney Morning Herald 24 Sep. 2013."Anh Do". Talking Heads with Peter Thompson. ABC1. 4 Oct. 2010. Radio.Bedell, Geraldine. “Veiled Humour.” The Guardian (2003). 8 Aug. 2016 <https://www.theguardian.com/stage/2003/apr/20/comedy.artsfeatures?CMP=Share_iOSApp_Other>.Berger, Rachel. LinkedIn [Profile page]. 14 June 2016 <http://www.linkedin.com/company/rachel-berger>.Do, Anh. The Happiest Refugee. Sydney: Allen and Unwin, 2010. Doran, Mark. "Service with a Smile: Entertainers Give Troops a Taste of Home.” Air Force 57.21 (2015). 12 June 2016 <http://www.defence.gov.au/Publications/NewsPapers/Raaf/editions/5721/5721.pdf>.Double, Oliver. Getting the Joke: The Inner Workings of Stand-Up Comedy. 2nd ed. London: Bloomsbury, 2014.Filmer, Natalie. "For Dandenong Comedian and Actress Diana Nguyen The Colour Yellow has a Strong Meaning.” The Herald Sun 3 Sep. 2013.Hage, Ghassan. White Nation: Fantasies of a White Supremacy in a Multicultural Age. Sydney: Pluto Press, 1998.Hussain, Nazeem. Hussain in the Membrane. Melbourne International Comedy Festival, 2016.———. "The Funny Side of 30.” Spectrum. The Age 12 Mar. 2016.Khalafalla, Khaled. Jerk. Melbourne International Comedy Festival, 2016.Low, Lian. "Fear of a Brown Planet: Fight the Power with Laughter.” Peril: Asian Australian Arts and Culture (2011). 12 June 2016 <http://peril.com.au/back-editions/edition10/fear-of-a-brown-planet-fight-the-power-with-laughter>. McCallum, John. "Cringe and Strut: Comedy and National Identity in Post-War Australia.” Because I Tell a Joke or Two: Comedy, Politics and Social Difference. Ed. Stephen Wagg. New York: Routledge, 1998. Morreall, John. Comic Relief. Oxford: Wiley-Blackwell, 2009.Neill, Rosemary. "Laughing through Adversity.” The Australian 28 Aug. 2010.Obeidalla, Dean. "Using Stand-Up to Counter Islamophobia.” TedXEast (2012). 16 June 2016 <http://tedxtalks.ted.com/video/TEDxEast-Dean-Obeidalla-Using-S;TEDxEast>.Palmer, Jerry. Taking Humour Seriously. London: Routledge, 1994. Szubanski, Magda. Reckoning. Melbourne: Text Publishing, 2015. Tan, Monica. "Aussie, Aussie, Aussie! Allahu Akbar! Nazeem Hussain's Bogan-Muslim Army.” The Guardian 29 Feb. 2016. "Uncle Sam.” Salam Café (2008). 11 June 2016 <https://www.youtube.com/watch?v=SeQPAJt6caU>.Wajahat, Ali, et al. "Fear Inc.: The Roots of the Islamophobia Network in America.” Center for American Progress (2011). 11 June 2016 <https://www.americanprogress.org/issues/religion/report/2011/08/26/10165/fear-inc>.

In November 2015 the progressive rock band, Coheed and Cambria, released their latest album and art-book, both titled The Color before the Sun (Color) (2015). This album deviates from their previous six releases by explicitly using a biographical frame for the art-book, the album, and their paratexts. This is a divergence from the band’s concept album approach, a transmedia storyworld, The Amory Wars (TAW) (2002-17), which fictionalised the life experiences of Claudio Sanchez, the band’s lead singer. When scholars discuss transmedia they often refer to fantastic and speculative fictions, such as the Star Wars (1977-2018), Star Trek (1966-2018), Doctor Who (1963-2018) and Marvel Universe (1961-2018) franchises, and TAW fits this framework. However, there is increasing consideration of the impact transmedia reading and writing practices have on storytelling that straddles representations of the “real” world. By making collaborative life-writing explicit, Color encourages readers to resist colonising ontologies. Framing the life-writing within the band’s earlier auto-fiction(s) (TAW), Color destabilises genre divides between fiction and life-writing, and positions readers to critique Sanchez’s narration of his subjectivity. This enables readers to abstract their critique to ontological narratives that have a material impact on their own subjectivities: law, medicine, religion, and economics.The terms subject and identity are often used interchangeably in the study of life-writing. By “subjectivity” I mean the individual’s understanding of their status and role in relation to their community, culture, socio-political context, and the operations of power dynamics therein. In contrast “identity” speaks to the sense of self. While TAW and Color share differing literary conceits—one is a space opera, the other is more explicitly biographical—they both explore Sanchez’s subjectivity and can be imagined as a web of connections between recordings (both audio and video), social media, books (comics, art books, novels and scripts), and performances that contribute to a form of transmedia life-writing. Life-writing is generic term that covers “protean forms of contemporary personal narrative” (Eakin 1). These narratives can be articulated across expressive practices, including interviews, profiles, diaries, social media, prose, poetry and so on. Zachary Leader notes in his introduction to On Life-Writing that “theoreticians and historians of life-writing commonly fuse or meld sub-genres [… and this] blurring of distinctions may help to account for life-writing’s growing acceptance as a field of academic study” (1-2). The growing relationship between life-writing and transmedia is therefore unsurprising.This article ties my research considering the construction of subjectivity through transmedia life-writing, with Emma Hill and Máiréad Nic Craith’s consideration of transmedia storytelling’s political potential (87-109). My intention is to determine how readers might construct their own subjectivity to resist oppressive interpellations. Hill and Nic Craith argue that the “lack of closure” in transmedia storyworlds creates “a greater breadth and depth of interpretation … than a single telling could achieve” (104). They conclude that “this expansive quality has allowed the campaigners to continue their activism in a number of different arenas” (104). I contest their assertion that transmedia lacks closure, and instead contend that closure, or the recognition of meaning, inheres with the reader (McCloud 33) rather than in a universalised meaning attributed to the text: transmedia storytelling therefore arouses political potential in reading communities. It is precisely this feature that enables the “expansive quality” valued in political activism. I therefore focus my discussion on the readers of transmedia life-writing, rather than on its writer(s). I argue that in reading a life or lives across multiple media the reader is exposed to the texts’ self-referential citations, its extra-diegetic reiterations, and its contradictions. The reader is invited to make meaning from these citations, reiterations and contradictions; they are positioned to confront the ways in which space and time shape life-writing and subjectivity. Transmedia life-writing can therefore empower readers to invoke critical reading practices.The reader’s agency offers the potential for resistance and revolution. This agency is invited in Color where readers are asked to straddle the fictional world of TAW and the “real” world. The Unravelling Palette of Dawn (2015) is the literary narrative that parallels this album. The book is written by Chondra Echert, Sanchez’s collaborator and wife, and is an amalgam of personal essay and photo-book. It opens by invoking the space opera that informs The Amory Wars: “Sector.12, Paris, Earth. A man and a woman sit in a café debating their fate” (n.p.). This situates the reader in the fictional world of TAW, but also brings the reader into the mundanity and familiarity of a discussion between two people. The reader is witness to a discussion between intimates that focusses on the question of “where to from here.” The idea of “fate” is either misunderstood or misapplied: fate is predetermined, and undebatable. The reader is therefore positioned to remember the band’s previous “concept,” and juxtapose it against a new “realistic” trajectory: fictional characters might have a fate that is determined by their writer, but does that fate extend to the writer themselves? To what extent is Sanchez and Echert’s auto/biography crafted by writers other than themselves?The opening passage provides a skin for the protagonists of the essay, enabling a fantastical space within which Echert and Sanchez might cloak themselves, as they have done throughout TAW. However, this conceit is peeled away on the second page:This might have been the story you find yourself holding. A Sci-fi tale, shrouded in fiction. The real life details modified. All names changed. Threads neatly tied up at the end and altered for the sake of ego and feelings.But the truth is rarely so well planned. The story isn’t filled with epic action scenes or glossed-over romance. Reality is gritty and mucky and thrown together in the last seconds. It’s painful. It is not beautiful … and so it is. The events that inspired this record are acutely personal. (n.p.)In this passage Echert makes reference to the method of storytelling employed throughout the texts that make up TAW. She lays bare the shroud of fiction that covers the lived realities of her and her husband’s lives. She goes on to note that their lives have been interpreted “to fit the bounds of the concept” (n.p.), that is TAW as a space opera, and that the current album was an opportunity to “pull back the curtain” (n.p.) on this conceit. This narrative is echoed by Sanchez in the documentary component of the project, The Physics of Color (2015). Like Echert, Sanchez locates the narrative’s genesis in Paris, but in the Paris of our own world, where he and Echert finalised the literary component of the band’s previous project, The Afterman (2012). Color, like the previous works, is written as a collaboration, not just between Sanchez and Echert, but also by the other members of the band who contributed to the composition of each track. This collaborative writing is an example of relationality that facilitates a critical space for readers and invites them to consider the ways in which their own subjectivity is constructed.Ivor Goodson and Scherto Gill provide a means of critically engaging with relational reading practices. They position narrative as a tool that can be used to engage in critical self, and social, reflection. Their theory of critical narrative as a form of pedagogy enables readers to shift away from reading Color as auto-fiction and towards reading it as an act of collaborative auto/biography. This transition reflects a shifting imperative from the personal, particularly questions of identity, to the political, to engaging with the web of human relations, in order to explore subjectivity. Given transmedia is generally employed by writers of fantasy and speculative literatures, it can be difficult for readers to negotiate their expectations: transmedia is not just a tool for franchises, but can also be a tool for political resistance.Henry Jenkins initiated the conversation about transmedia reading practices and reality television in his chapters about early seasons of Survivor and American Idol in his book Convergence Culture. He identifies the relationship between viewers and these shows as one that shifts from “real-time interaction toward asynchronous participation” (59): viewers continue their engagement with the shows even when they are not watching a broadcast. Hill and Nic Craith provide a departure from literary and media studies approaches to transmedia by utilising an anthropological approach to understanding storyworlds. They maintain that both media studies and anthropological methodologies “recognize that storytelling is a continually contested act between different communities (whether media communities or social communities), and that the final result is indicative of the collective rather than the individual” (88–89). They argue that this collectivity results from “negotiated meaning” between the text and members of the reading community. This is a recognition of the significance held by readers of life-writing regarding the “biographical contract” (Lejeune 22) resulting from the “rationally motivated inter subjective recognition of norms” (Habermas n.p.). Collectivity is analogous to relationality: the way in which the readers’ subjectivity is impacted upon by their engagement with the storyworld, helixed with the writer(s) of transmedia life-writing having their subjectivity impacted upon by their engagement with reader responses to their developing texts. However, the term “relationality” is used to slightly different effect in both transmedia and life-writing studies. Colin Harvey’s definition of transmedia storytelling as relational emphasises the relationships between different media “with the wider storyworld in question, and by extension the wider culture” (2). This can be juxtaposed with Paul John Eakin’s assertion that life-writing as a genre that requires interaction between the author and their audience: “autobiography of the self but the biography and autobiography of the other” (58). It seems to me that the differing articulations of “relationality” arising from both life-writing and transmedia scholarship rely on, but elide, the relationship between the reader and the storyworld. In both instances it is left to the reader to make meaning from the text, both in terms of understanding the subject(s) represented in relation to their own, and also as the nexus between the transmedia text, the storyworld, and the broader culture. The readers’ own experiences, their memories, are central to this relationality.The song “Colors” (2015), which Echert notes in her essay was the first song to be written for the album, chronicles the anxieties that arose after Sanchez and Echert discovered that their home (which they had been leasing out) had been significantly damaged by their tenants. In the documentary The Physics of Color, both Echert and Sanchez speak about this song as a means for Sanchez to reassert his identity as a musician after an extended period where he struggled with the song-writing process. The song is pared back, the staccato guitar in the introduction echoing a similar theme in the introduction to the song “The Afterman” (2012) which was released on the band’s previous album. This tonal similarity, the plucked electric guitar and the shared rhythm, provides a sense of thoroughness between the songs, inviting the listener to remember the ways in which the music on Color is in conversation with the previous albums. This conversation is significant: it relies on the reader’s experience of their own memory. In his book Fantastic Transmedia, Colin Harvey argues that memories are “the mechanisms by which the ‘storyworld’ was effectively sewn together, helping create a common diegetic space for me—and countless others—to explore” (viii). Both readers’ and creators’ experiences of personal and political time and space in relation to the storyworld challenge traditional understandings of readers’ agency in relation to the storyworld, and this challenge can be abstracted to frame the reader’s agency in relation to other economic, political, and social manifestations of power.In “The Audience” Sanchez sings:This is my audience, forever oneTogether burning starsCut from the same diseaseEver longing what and who we areIn the documentary, Sanchez states that this song is an acknowledgement that he, the band and their audience are “one and the same in [their] oddity, and it’s like … family.” Echert echoes this, referring to the intimate relationships built with fans over the years at conventions, shows and through social media: “they’ve superseded fandom and become a part of this extended family.” Readers come to this song with the memory of TAW: the memory of “burning Star IV,” a line that is included in the titles of two of Coheed’s albums (Good Apollo, I’m Burning Star IV Vols. 1 (2005) and 2 (2007), and to the Monstar disease that is referenced throughout Second Stage Turbine Blade, both the album (2002) and the comic books (2010). As a depiction of his destabilised identity however, the lyrics can also be read as a poetic commentary on Sanchez’s experiences with renegotiating his subjectivity: his status as an identity that gains its truth through consensus with others, an audience who is “ever longing what and who we are.” In the documentary Sanchez states “I could do the concept thing again with this album, you know, take it and manipulate it and make it this other sort of dimension … but this one … it means so much more to be … I really wanted this to be exposed, I really want this to be my story.” Sanchez imagines that his story, its truth, its sacredness, is contingent on its exposure on being shared with an audience. For Sanchez his subjectivity arises from on his relationality with his audience. This puts the reader at the centre of the storyworld. The assertion of subjectivity arises as a result of community.However, there is an uncertainty that floats in the lacunae between the texts contributing to the Color storyworld. As noted, in the documentary, both Echert and Sanchez speak lovingly of their relationships with Coheed audiences, but Sanchez goes on to acknowledge that “there’s a little bit of darkness in there too, that I don’t know if I want to bring up… I’ll keep that a mystery,” and some of the “The Audience” lyrics hint at a more sinister relationship between the audience and the band:Thieves of our timeWatch as they rape your integrityMarch as the beat suggests.One reader, Hecatonchair, discusses these lyrics in a Reddit post responding to “The Audience”. They write:The lyrics are pretty aggressive, and could easily be read as an attack against either the music industry or the fans. Considering the title and chorus, I think the latter is who it was intended to reach, but both interpretations are valid.This acknowledgement by the poster that there the lyrics are polyvalent speaks to the decisions that readers are positioned to make in responding to the storyworld.This phrase makes explicit the inconsistency between what Sanchez says about the band’s fans, and what he feels. It is left to the reader to account for this inconsistency between the song lyrics and the writers’ assertions. Hecatonchair and the five readers who respond to their post all write that they enjoy the song, regardless of what they read as its aggressive position on the band’s relationship with them as audience members. In identifying as both audience members and readers with different interpretations, the Reddit commentators recognise their identities in intersecting communities, and demonstrate their agency as subjects. Goodson and Gill invoke Charles Taylor’s assertion that one of the defining elements of “identity” is a “defining community,” that is “identity is lived in social and historical particulars, such as the literature, philosophy, religious teaching and great conversations taking place along one’s life’s journeys” (Goodson and Gill 27).Harvey identified readers as central to transmedia practices. In reading a life across multiple media readers assert agency within the storyworld: they choose which texts to engage with, and how and when to engage with them. They must remember, or more specifically re-member, the life or lives with which they are engaging. This re-membering is an evocative metaphor: it could be described as Frankensteinian, the bringing together of texts and media through a reading that is stretched across the narrative, like the creature’s yellow skin. It also invokes older stories of death (the author’s) and resurrection (of the author, by the reader): the murder and dismemberment of Osiris by his brother Set, and Isis, Osiris's wife, who rejoins the fragmented pieces of Osiris, and briefly brings him back.Coheed and Cambria regularly cite musical themes or motifs across their albums, while song lyrics are quoted in the text of comic books and the novel. The readers recognise and weave together these citations with the more explicitly autobiographical writing in Color. Readers are positioned to critique the function of a canonical truth underpinning the storyworld: whose life is being told? Sanchez invokes memory throughout the album by incorporating soundscapes, such as the sounds of a train-line on the song “Island.” Sanchez notes he and his wife would hear these sounds as they took the train from their home in Brooklyn to the island of Manhattan. Sanchez brings his day-to-day experiences to his readers as overlapping but not identical accounts of perspectives. They enable a plurality of truths and destabilise the Western focus on a singular or universal truth of lived experience.When life-writing is constructed transmedially the author must—of necessity—relinquish control over their story’s temporality. This includes both the story’s internal and external temporalities. By internal temporality I am referring to the manner in which time plays out within the story: given that the reader can enter into and engage with the story through a number of media, the responsibility for constructing the story’s timeline lies with the reader; they may therefore choose, or only be able, to engage with the story’s timeline in a haphazard, rather than a chronological, manner. For example, in Sanchez’ previous work, TAW, comic book components of the storyworld were often released years after the albums with which they were paired. Readers can only engage with the timelines as they are published, as they loop back through and between the storyworld’s temporality.The different media—CD, comic, novel, or art-book—often represent different perspectives or experiences within the same or at least within overlapping internal temporalities: significant incidences are narrated between the media. This results in an unstable external temporality, over which the author, again, has no control. The reader may listen to the music before reading the book, or the other way around, but reading the book and listening to the music simultaneously may not be feasible, and may detract from the experience of engaging with each aspect of the storyworld. This brings us back to the importance of memory to readers of transmedia narratives: they must remember in order to, as Harvey says, stitch together a common “diegetic space.” Although the author often relinquishes control to the external temporality of the text, placing the reader in control of the internal temporality of their life-writing destabilises the authority that is often attributed to an auto/biographer. It also makes explicit that transmedia life-writing is an ongoing project. This allows the author(s) to account for “a reflexive process where individuals take the opportunity to evaluate their actions in connection with their intentions and thus ‘write a further part’ of their histories” (Goodson and Gill 33).Goodson and Gill note that “life’s events are never linear and any intention for life to be coherent and progressive in accordance with a ‘plan’ will constantly be interrupted” (30). This is why transmedia offers writers and readers a more authentic means of engaging with life-writing. Its weblike structure enables readers to view subjectivity through a number of lenses: transmedia life-writing narrates a relational subjectivity that resists attempts at delineation. There is still a “continuity” that arises when Sanchez invokes the storyworld’s self-referential citations, reiterations, and contradictions in order to “[define] narratives within a temporal, social and cultural framework” (Goodson and Gill 29), however transmedia life-writing refuses to limit itself, or its readers, to the narratives of space and time that regulate mono-medial life-writing. Instead it positions readers to “unmask the world and then change it” (43).ReferencesArendt, Hannah. The Human Condition. Chicago: U of Chicago P, 1958.Coheed and Cambria. Second Stage Turbine Blade. New York: Equal Vision Records, 2002.———. In Keeping Secrets of Silent Earth: 3. New York: Equal Vision Records, 2003.———. Good Apollo I’m Burning Star IV, Vol. 1: From Fear through the Eyes of Madness. New York: Columbia, 2005.———. Good Apollo I’m Burning Star IV, Vol. 2: No World for Tomorrow. New York: Columbia, 2007.———. The Year of the Black Rainbow. New York: Columbia, 2010.———. The Afterman: Ascension. Los Angeles: Hundred Handed/Everything Evil, 2012.———. The Afterman: Descension. Los Angeles: Hundred Handed/Everything Evil, 2013.———. The Colour before the Sun. Brooklyn: the bag.on-line.adventures and Everything Evil Records, 2015.———. “The Physics of Color” Documentary DVD. Brooklyn: Everything Evil Records, 2015. Eakin, Paul John. How Our Lives Become Stories: Making Selves. Ithaca: Cornell UP, 1999. ———. The Ethics of Life Writing. Ithaca: Cornell UP, 2004.Echert, Chondra. The Unravelling Palette of Dawn. Brooklyn: the bag.on-line.adventures and Everything Evil Records, 2015.Goodson, Ivor, and Scherto Gill. Critical Narrative as Pedagogy. London: Bloomsbury Publishing, 2014.Habermas, Jürgen. The Theory of Communicative Action, Vol. 1: Reason and the Rationalisation of Society. Trans. Thomas McCarthy. Cambridge: Polity Press, 1984.Harvey, Colin. Fantastic Transmedia: Narrative, Play and Memory Across Science-Fiction and Fantasy Storyworlds. London: Palgrave Macmillan, 2015.Hecatonchair. “r/TheFence's Song of the Day Database Update Day 9: The Audience”. 11 Feb. 2018 <https://www.reddit.com/r/TheFence/comments/4eno9o/rthefences_song_of_the_day_database_update_day_9/>.Hill, Emma, and Máiréad Nic Craith. “Medium and Narrative Change: The Effects of Multiple Media on the ‘Glasgow Girls’ Story and Their Real-Life Campaign.” Narrative Culture 3.1 (2016). 9 Dec. 2017 <http://www.jstor.org/stable/10.13110/narrcult.3.1.0087>.Jenkins, Henry. Convergence Culture: Where Old and New Media Collide. New York: New York UP, 2006.Leader, Zachary, ed. On Life-Writing. Oxford: Oxford UP, 2015.Lejeune, Philippe, and Paul John Eakin, eds. On Autobiography. Trans. Katherine Leary. Minneapolis: U of Minnesota P, 1989.McCloud, Scott. Understanding Comics: The Invisible Art, New York: Harper Perennial, 1994.Sanchez, Claudio, and Gus Vasquez. The Amory Wars Sketchbook. Los Angeles: Evil Ink Comics, 2006.———, Gus Vasquez, et al. The Amory Wars: The Second Stage Turbine Blade Ultimate Edition. Los Angeles: BOOM! Studios, 2010.———, Peter David, Chris Burnham, et al. In Keeping Secrets of Silent Earth: 3 Ultimate Edition. Los Angeles: BOOM! Studios, 2010.———, and Christopher Shy. Good Apollo I’m Burning Star IV, Vol. 1: From Fear through the Eyes of Madness. Los Angeles: Evil Ink Comics, 2005.———, and Peter David. Year of the Black Rainbow. Nashville: Evil Ink Books, 2010.———, and Nathan Spoor, The Afterman. Los Angeles: Evil Ink Comics/Hundred Handed Inc., 2012.

Photo ID 129550055 © Katarzyna Bialasiewicz | Dreamstime.com ABSTRACT It has been 26 years since medical aid in dying (“MAiD”) was first legalized in Oregon, and today, about 20 percent of people in the US live in jurisdictions that permit MAiD. The New York State legislature is currently considering a bill that would permit Medical Aid in Dying for terminally ill patients in certain defined circumstances. Those states now benefit from decades of experience, evidence, and reporting from MAiD jurisdictions. This demonstrates that legislation can simultaneously grant terminally ill citizens the civil right to access MAiD while also aggressively protecting all patients from coercion, manipulation, and harm. Given the copious evidence gathered in the past decades, concerns about abuse can no longer be credited as grounds for opposing the passage of legislation that is demonstrably both effective and safe. INTRODUCTION It has been 26 years since medical aid in dying (“MAiD”) was first legalized in Oregon,[1] and today, about 20 percent of people in the US live in jurisdictions that permit MAiD.[2] Other jurisdictions, including New York, are actively considering adopting MAiD laws. Those states now benefit from decades of experience, evidence, and reporting from MAiD jurisdictions, demonstrating that legislation can permit MAiD while also aggressively protecting all patients from coercion, manipulation, and harm. The data should allay the concerns of those who oppose MAiD due to the risk of abuse, coercion, and a hypothetical slippery slope. We, as a society, as clinicians, and as ethicists, must remain vigilant and prevent abuse of MAiD, given the potential risks in the community and in congregate care settings and the risk of patient exploitation by family members. However, given the copious evidence, concerns about abuse do not justify opposition to legislation that is effective and safe. I. New York’s MAiD Bill The New York State legislature is currently considering a bill that would permit MAiD for terminally ill patients in defined circumstances.[3] The bill applies only to adults with a terminal illness or condition that is “incurable and irreversible” and “will, within reasonable medical judgment, produce death within six months.” The bill contains numerous protective requirements: MAiD requests can only be made by the patient themself; requests cannot be made by healthcare agents, surrogates, or anyone else; MAiD requests must be made both orally and in writing to the patient’s attending physician; No person is eligible for MAiD solely because of age or disability; The patient’s attending physician must determine the patient has a qualifying terminal illness, has decision-making capacity, and has made a voluntary, informed decision to request MAiD, in the absence of coercion; These determinations must be confirmed by a second consulting physician in writing; If the attending physician has any concern that the patient may not have decision-making capacity, the patient must be referred to a mental health professional; The attending physician has additional duties to the patient, including ensuring the decision is informed, by discussing the patient’s condition and prognosis; discussing the MAiD process, and treatment alternatives like palliative and hospice care; offering referrals to other appropriate treatment, like palliative and hospice care; and educating the patient that their request can be rescinded at any time and offering them an opportunity to do so; The written request must be witnessed by at least two adults who cannot be (i) related to the patient, (ii) entitled to any portion of the patient’s estate, (iii) employed by a healthcare facility where the patient is receiving treatment or residing, (iv) or the attending physician, consulting physician, or mental health professional determining decision-making capacity; and MAiD medication must be self-administered by the patient, and it must be voluntarily ingested.[4] ARGUMENTS FOR AND AGAINST MAiD II. No Evidence of Abuse of Existing MAiD Laws MAiD supporters and critics alike have a concern about the abuse of MAiD. For this reason, MAiD laws throughout the US incorporate strict eligibility criteria and protective procedural requirements. For instance, patients are eligible only if they are terminally ill with six months or less to live, more than one physician must be involved, and requests must be witnessed (by individuals unrelated to the patient who will not profit from the patient’s estate). MAiD requests have been closely examined in the 27 years since Oregon became the first state to legalize the practice. The results show that these compassionate and protective measures have worked. There have been no documented or substantiated incidents of MAiD abuse since Oregon became the first to implement a MAiD law in 1997.[5] In 2019, the executive director of Disability Rights Oregon (DRO), an organization mandated by federal law to investigate complaints of abuse or neglect of people with disabilities, reported that DRO has never received a complaint that a person with disabilities was coerced into obtaining a prescription for MAiD drugs.[6] A recent study of aggregated data from all nine of the US jurisdictions with publicly available MAiD records from 1998 to 2002 found that 95.6 percent of those who died by MAiD were non-Hispanic white individuals, and 53.1 percent were male.[7] 72.2 percent of these individuals had at least some college education, 74 percent had a cancer diagnosis, and the median age of MAiD death was 74 years old. Only 11 percent of patients were uninsured. MAiD users tend to be white, older, educated, diagnosed with cancer, and insured. Fears that MAiD would overwhelmingly be used by (or on) the poor, the uninsured, the uneducated, or racial and ethnic minorities have not materialized. This data has actually raised a converse concern: that MAiD may, inequitably, not be readily available to less privileged populations or those with a diagnosis other than cancer.[8] Opponents of MAiD may argue that the recent relaxation of certain legal restrictions in some jurisdictions is evidence that the slippery slope to unrestricted euthanasia has begun. This is a mischaracterization. Certain restrictions have been adjusted. For instance, Oregon and Vermont removed the residency restriction that previously excluded non-residents from eligibility.[9] Both states changed the residency requirement due to lawsuits challenging the constitutionality of requiring residence.[10] New Jersey’s law will likely change soon, as well.[11] Initial MAiD laws were drafted to be highly restrictive out of concern about unintended and unforeseeable consequences. Given the gravity of the subject, decades ago, it was better to err on the side of caution, even if that meant excluding from eligibility people who ought to, ethically or legally, be included. Now, with nearly 30 years of experience and data, we can better determine which requirements are necessary to appropriately protect patients, clinicians, and society. Restrictions proven to be unnecessary can now be modified. The core purposes of MAiD laws and the rights and protections they provide are not changing. Rather, a few aspects of the regulations are being adjusted so they are not more restrictive than necessary to achieve their purpose. The ever-growing body of evidence that MAiD laws can adequately protect against abuse and the mythic slippery slope has assured many that their fears will not materialize.[12] For example, NYU bioethicist Arthur Caplan was once a vigorous opponent of MAiD. He worried that MAiD laws would lead to the abuse of the poor, uninsured, and disabled in service of cost-saving or the convenience of others. [13] But, after closely following the empirical evidence from MAiD early-adopters, Oregon and Washington, Caplan changed his mind. In 2018, he argued in favor of the NY MAiD bill before the New York State Assembly Standing Committee on Health.[14] Discussing his review of evidence from these states, Caplan stated: I found no cause for my concerns, none with respect to the slippery slope. There isn’t solid evidence of coercion or duplicity being exercised with respect to people who choose assistance in dying in either state. The police, government officials, families of those who have chosen to use the legislation and the general citizenry find no causes or basis for changing the laws due to abuse or misapplication . . . These slippery slope arguments are just not true . . . there is no current factual support for this slippery slope argument that vulnerable individuals are at risk for being coerced into using the law.[15] Decades of evidence has shown that legislation can simultaneously grant terminally ill patients access to MAiD while also protecting against coercion and abuse. In the face of this evidence, continuing to deny access to MAiD because of hypothetical abuse is unjust and unethical. III. Views of Opponents are Neither Grounded in Fact nor Consistent with Current End-of-Life Practices a. Risk of coercion One common argument heard today from some disability advocates who oppose MAiD goes something like this: Everybody who would qualify for and use MAiD is (or will become) a disabled person, so MAiD only kills people with disabilities. The most common reasons people choose to end their lives via MAiD are disability issues, like loss of autonomy, less ability to engage in activities, and loss of dignity. They argue that, instead of making it easier for disabled people to die, we should make sure that proper services and support exist so that disabled people do not choose to die. Such disability-rights-based arguments tend to assert that to avoid abuse, we must prohibit MAiD altogether. They argue that legalizing MAiD will inexorably lead to abuse and coercion, and disabled people will be pressured into suicide. Some even argue that MAiD laws are the first step to euthanasia, noting the path in other jurisdictions.[16] As an initial matter, people with disabilities deserve adequate support and services, and these are not always available to them. People with disabilities have faced tremendous discrimination in the healthcare system and have been historically prevented from accessing proper care and asserting their autonomy. Ensuring that all can access adequate end-of-life care, like palliative or hospice care, is an ongoing battle that ought not be abandoned. But fighting for adequate end-of-life care and legalizing MAiD are not mutually exclusive. In Oregon, 90 percent of those who access MAiD are enrolled in hospice and states with MAiD laws tend to have better access to palliative care than states without.[17] MAiD proponents seek only to add another choice for the dying, not to diminish any other options. This is reflected in the text of New York’s pending bill, which explicitly requires patient education and referrals to appropriate end-of-life services, like palliative care and hospice.[18] No one has openly argued that society should hold terminally ill patients hostage in order to obtain broader support and funding for palliative care, but that is the practical effect. Beyond the need for supportive services and proper access to the full range of end-of-life care options, the disability argument fails. First, the assertion that MAiD laws will be abused and disabled people will be coerced into suicide is not grounded in fact. To the contrary, real-life evidence gathered in over two decades of legal MAiD has shown no documented or substantiated incidents of abuse, as discussed above.[19] The slippery slope has simply not materialized. Advocates for people with disabilities who are opposed to MAiD have not clearly articulated exactly who is vulnerable to being coerced into obtaining a MAiD prescription or even how such coercion could logistically occur. Most people with disabilities are not vulnerable to MAiD abuse, as they do not have a qualifying terminal illness or lack decisional capacity due to a developmental disability and are therefore not eligible. MAiD opponents appear to be claiming that all those who qualify for MAiD are vulnerable and seek protection from MAiD laws. But this would include many of the people that, over the past decades, have aggressively and publicly advocated for access to MAiD – terminally ill people, like Brittany Maynard,[20] many of whom lobbied hard for the passage of MAiD laws while knowing that they themselves would die before the laws passed. Opponents of MAiD from a segment of the disability rights community are telling individuals who they claim, without permission, as members of the MAiD opposition community, that they must all endure unimaginable suffering without a MAiD option because they must be protected from theoretical coercive harm. People with disabilities should be allowed to make their own choices. No one, not even the most well-meaning advocate, should be allowed to obstruct a patient’s end-of-life choices – those choices belong to the patient alone. b. Argument That the Demand for MAID is a Result of Poor Disability Services Second, the argument that terminally ill patients would decline MAiD if only they had better disability services or support is disingenuous to the extent that it ignores the fact that people choosing MAiD are actively dying. No provision of supportive services can change this. And it is perfectly reasonable for someone who knows that they will die in less than six months to want some control over the manner of their death and to avoid the deterioration, indignity, and suffering that could come with it. The argument construes a MAiD death as a choice to die rather than live with a disability. But individuals choosing MAiD are not choosing death – death is coming and coming quickly. MAiD simply offers some control over this reality, giving patients an option that is safe, certain, and painless. Certainly, supportive hospice services should be available for these individuals. But there is no evidence demonstrating that any amount of service would eliminate the need and desire for the MAiD option. c. Inconsistent Positions on MAID and Other Ending Life Care Options: Palliative Sedation and VSED MAiD opponents who are concerned about abuse and coercion often hold inconsistent views on other currently available ending life care options.[21] For example, some argue that palliative sedation[22] renders MAiD unnecessary and does not present the same ethical problems.[23] However, whereas MAiD can only be chosen by the patient themself (and the patient must have decision-making capacity), the same is not true for palliative sedation. Palliative sedation, a valuable modality of end-of-life care, does not have to be initiated by the patient. If the patient is deemed not to have decision-making capacity to make that decision, their healthcare proxy can decide to initiate the process and continue it until the patient dies. Individuals other than patients often choose to begin palliative sedation and continue it to its inevitable conclusion. And because palliative sedation does not require enabling legislation, none of the protective safeguards incorporated in MAiD legislation are available to protect those who receive palliative sedation. Some may try to differentiate between palliative sedation and MAiD by saying that once started, palliative sedation can always be discontinued – it need not end in the patient’s death. This is true, but the very process of palliative sedation will inevitably make the patient insensible or unconscious or otherwise unable to exercise a choice to stop sedation. With MAiD, the patient must self-administer and ingest the medication on their own, with death following quickly. The patient can choose to forgo MAID up until the very moment of self-administration. Considering MAiD’s procedural safeguards, including that only the patient may choose and administer MAiD, MAiD patients are offered more protection from potential abuse than patients who receive palliative sedation. While some have vocally opposed MAiD for decades, there has not been similar opposition to the option of voluntarily stopping eating and drinking (VSED). With VSED, adults with decision-making capacity make a voluntary decision to refuse nutrition and hydration to die more quickly. People choosing VSED are, essentially, making the same choice that people choosing MAiD do. But VSED is a less predictable process that takes much longer to complete. Unfortunately, the process also carries a risk of unpleasant side-effects, though proper care can help mitigate them. Additionally, the practice of VSED is not constrained by statutorily defined protective measures, as is the case with MAiD – one does not even need to have a terminal illness to choose VSED.[24] It is logically inconsistent for those who oppose MAiD because of the perceived potential of abuse to hold different views about VSED.[25] If malevolent actors can unethically pressure or coerce patients into MAiD, they can also coerce them to stop eating and drinking. As with palliative sedation, it could be argued that an important difference is that VSED can be stopped, unlike MAiD. This argument fails clinically and ethically. As with palliative sedation, the VSED process eventually results in the patient losing consciousness and decision-making capacity. The patient generally becomes unarousable for a period that could last for days or even weeks. For this reason, it is crucial for VSED patients to express their choice in writing (or preferably in video recording)[26] to ensure that they will not be given nutrition or hydration when they are no longer able to enforce their refusal (or if they begin asking for nutrition or hydration). Therefore, there is a period in which the patient cannot decide to end the process, just as with palliative sedation. To the extent that someone is so concerned with potential abuse of MAiD that they seek to ban it but have not expressed similar concerns with VSED, these positions are inconsistent. At a NYS Bar Association-sponsored conference on MAiD in 2019, David Hoffman asked a MAiD opponent whether, “as someone who is looking out for the interests of a segment of the disability population,” she supports palliative sedation and VSED.”[27] Kathryn Carroll, who represented the Center for Disability Rights (“CDR”), confirmed that CDR did not oppose palliative sedation and did not offer a position on VSED. She noted the subtle difference in intention: I don’t believe the Center for Disability Rights has taken issue with palliative sedation. And my understanding is that there is a key difference between palliative sedation and assisted suicide, particularly in that palliative sedation, the point is not to bring about the death of the person, but to relieve the pain that they are experiencing. And so the death is more of a side effect rather than the intended outcome.[28] During the questioning, she provided no explanation as to why the potential for abuse would be different among palliative sedation, VSED, and MAiD.[29] The other MAiD opponent on the panel, Dennis Vacco, of Vacco v. Quill[30] fame, interjected but could not explain any ethically significant difference between VSED and MAiD. Instead, he focused solely on palliative sedation, stating that the relevant difference is that palliative sedation can be stopped: . . . treating the pain including what you referred to as terminal sedation, is not moral and legally and ethnically the same as physician-assisted suicide . . . The fact of the matter is – the difference is you can terminate that treatment, and it’s the permanent aspect of physician-assisted suicide that goes back to what I said 20 minutes ago. You can’t put the bright line anyplace else other than where it is.[31] But, as discussed above, that difference is of little import, given that palliative sedation results in patients without the ability or capacity to make the choice to stop treatment. Vacco then reverted to his concerns about the potential for coercion and the elusive slippery slope, referencing his primary argument that the only way to ensure there is no abuse of a MAiD law is not to have one at all: The bright line that is created by the law in the state of New York, which makes physician-assisted suicide a manslaughter in the second-degree, or assisting suicide by anybody, manslaughter in the second degree . . . is unfortunately the only place that line can be. That line should not move further toward accommodation. And we see here in the context of . . . all of the so-called protections in the statute. With every protection that is not prohibition, with every protection, you raise the possibility of abuse. You raise the possibility with every protection.[32] Neither Vacco nor Carroll addressed the fact that many common practices today can be the result of coerced decisions. These practices have none of the safeguards contained in MAiD legislation. As another panelist, David Leven, stated: consider that people who want to have life-sustaining treatment withdrawn, whether it’s a ventilator or feeding tube, they can also be coerced by family members. That can happen even more often, of course, because that process takes place more and more often, and there are none of the safeguards that we’re talking about here . . . there are risks involved in any process which might result in a hastened death. But there seems to be very little risk involved with medical aid in dying based on the experience in 40 years and the nine states which now permit medical aid in dying.[33] There is an inescapable inconsistency within the disability argument: one cannot logically be so concerned about the abuse of legalized access to MAiD to justify opposing all MAiD legislation while simultaneously supporting options like palliative sedation or VSED as abuse-free alternatives. d. Argument Against Speaking for a Community with Diverse Views Finally, while some disability advocates opposing MAiD will claim terminally ill patients as part of their community, they have no right or authorization to speak for the extremely heterogeneous group of terminally ill patients or the disability community[34] as a whole. The disability community is not homogenous; while some members oppose MAiD, others support it.[35] Recent polling indicates that MAiD may have broad support across the disability community.[36] e. MAiD Opponents Hold the Rights of the Terminally Ill Subordinate to Their Personal Morality and Unsubstantiated Theoretical Concerns The argument that does not get much attention, the one that is the simplest and perhaps even the most compelling, is that all killing is wrong, and the government ought not to be in the business of enabling it. That is certainly a compelling religious and moral argument against individuals engaging in any form of acts that result in ending a human life. But such an ethical or theological position does not dictate that individuals who hold different views on personal morality should be precluded by the state from accessing the most safe, certain, and painless means of addressing an invariably terminal illness. Arguments like the one described above by Vacco (that the only way to completely avoid potential MAiD abuse is to prohibit MAiD) are essentially claiming that the safest thing to do is to subordinate the suffering of the terminally ill to avoid the more subtle task of balancing the interests of two different groups of New York state citizens. But surely, that is the role of the legislature every day. And we should expect no less from the legislature on this issue. The best way to ensure no one dies in car accidents is to prohibit driving. But instead of doing so, we implement safety regulations (like speed limits) to balance the right to travel with the right of everyone else not to be killed in the process. Evidence demonstrates that MAiD legislation can also strike a balance between the rights of the terminally ill and the need to prevent harm. It is not justifiable to support a blanket prohibition of MAiD. CONCLUSION Opponents of MAiD have had decades to cite problematic case studies or formulate a compelling moral argument against it that is grounded in data rather than an assertion of their personal morality. Plainly, no one on either side of the MAiD legislative discussion wants to see anyone subjected to involuntary euthanasia or coerced into MAiD as a better alternative to palliative care when such a plan of care is a viable alternative to “ending life care.” However, enough time has passed, and the risk of coercion has been given sufficient study and debate that we can now conclude, as a society, that the rights of the terminally ill and the rights of persons committed to living their best and longest life with a disability are wholly compatible. It is time for the legislature to strike the appropriate balance and give the terminally ill a well-regulated, responsible pathway to obtaining medication that can relieve their suffering in a manner that is safe, certain, and painless. - [1] Oregon’s Death with Dignity Act, Oregon Health Authority, https://www.oregon.gov/oha/ph/providerpartnerresources/evaluationresearch/deathwithdignityact/pages/index.aspx [2] Elissa Kozlov et al., Aggregating 23 Years of Data on Medical Aid in Dying in the United States, 70 Journal of the American Geriatrics Society 3040 (2022). https://doi.org/10.1111/jgs.17925 [3] Medical Aid in Dying Act, A.995-A, N.Y. St. Assemb. (2023), available at https://legislation.nysenate.gov/pdf/bills/2023/A995A; see also, Medical Aid in Dying Act, S.2445-A, N.Y. St. Senate (2023), available at https://legislation.nysenate.gov/pdf/bills/2023/S2445A. [4] Id. [5] Ronald A. Lindsay, Oregon’s Experience: Evaluating the Record, 9 The American Journal of Bioethics 19 (2009), https://doi.org/10.1080/15265160802654137; Christopher A. Riddle, Medical Aid in Dying: The Case of Disability, in New Directions in the Ethics of Assisted Suicide and Euthanasia 234 (Michael Cholbi & Jukka Varelius eds., 2nd ed. 2023), https://doi.org/10.1007/978-3-031-25315-7; Health Law Section: Duties, Rights & the Law at the End of Life (2019), NY ST. BAR ASSOC. (Nov. 8, 2019), https://nysba.org/products/health-law-section-duties-rights-the-law-at-the-end-of-life-2019/; Medical Aid in Dying: Hearing on A.2383-A Before the New York State Assembly Standing Committee on Health (2018) (testimony of Arthur Caplan), transcript available at https://nystateassembly.granicus.com/DocumentViewer.php?file=nystateassembly_bc5bd4afc9fd8b9021781bc9e35e15ae.pdf&view=1; Fact: Medical Aid in Dying Laws Work to Protect Patients. (n.d.). Compassion & Choices. Retrieved September 5, 2023, from https://compassionandchoices.org/resource/fact-medical-aid-in-dying-laws-work-to-protect-patients; Frequently Asked Questions. (2021, December 7). Death With Dignity. https://deathwithdignity.org/resources/faqs/. [6] Bob Joondeph, Letter from Disability Rights Oregon (DRO), Compassion & Choices (Feb. 14, 2019), https://www.compassionandchoices.org/docs/default-source/default-document-library/disability-rights-oregon-dwd-letter-2-14-19.pdf. [7] Elissa Kozlov et al., Aggregating 23 Years of Data on Medical Aid in Dying in the United States, 70 Journal of the American Geriatrics Society 3040 (2022). https://doi.org/10.1111/jgs.17925 [8] Id. [9] Medical Aid in Dying: Act 39: Patient Choice and Control at the End of Life, Vermont Ethics Network, https://vtethicsnetwork.org/palliative-and-end-of-life-care/medical-aid-in-dying-act-39 (last visited Sept. 21, 2023). [10] Gideonse v. Brown, No. 3:21-cv-01568-AC (D. Or.); Bluestein v. Scott, No. 2:22-cv-00160 (D. Vt.). [11] Govatos v. Murphy, No. 2:23-cv-12601(D.N.J.). [12] Medical associations, historically opponents of MAiD, have begun adopting neutral positions, reflecting changing attitudes of the medical community. E.g., California Medical Association removes opposition to physician aid in dying bill, California Medical Association (May 20, 2015), https://www.cmadocs.org/newsroom/news/view/ArticleId/27210/California-Medical-Association-removes-opposition-to-physician-aid-in-dying-bill; Board directs CMS to develop and distribute “End-of-Life Act” education to members, Colorado Medical Society (November 22, 2016), https://www.cms.org/articles/board-directs-cms-to-develop-and-distribute-end-of-life-act-education-to-me; Vermont Medical Society Policy on End-of-life-Care, Vermont Medical Society (2017), https://vtmd.org/client_media/files/vms_resolutions/2017End-of-Life-Care.pdf (last accessed Sept. 21, 2023); but see Physician-Assisted Suicide, AMA Code of Ethics, https://code-medical-ethics.ama-assn.org/ethics-opinions/physician-assisted-suicide. (5.7 provides opinion opposing MAiD; opinion 1.1.7 provides opinion on conscientious objection.); The American Medical Association could vote to change its stance on medical aid in dying, Death with Dignity (Nov. 10, 2023), https://deathwithdignity.org/news/2023/11/ama-could-vote-to-change-stance-on-maid/ (Update notes that the AMA did not change its stance from opposed to neutral at its November 2023 interim meeting in Baltimore, but referred the resolutions for further study). [13] Medical Aid in Dying: Hearing on A.2383-A Before the New York State Assembly Standing Committee on Health (2018) (testimony of Arthur Caplan), transcript available at https://nystateassembly.granicus.com/DocumentViewer.php?file=nystateassembly_bc5bd4afc9fd8b9021781bc9e35e15ae.pdf&view=1. [14] Id. [15] Id. [16] Id. (noting the laws in Netherlands, Belgium and Canada.); see also National Council on Disability, The danger of assisted suicide laws: Part of the Bioethics and Disability series (2019). https://ncd.gov/sites/default/files/NCD_Assisted_Suicide_Report_508.pdf. [17] Sean Riley & Ben Sarbey, The unexamined benefits of the expansive legalization of medical assistance-in-dying, 19 J. Bioethical Inquiry 4, 663 (2022) (citing Oregon Health Authority Center for Health Statistics, Oregon Death with Dignity Act: 2018 Data Summary (2019), https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year21.pdf and R. Sean Morrison, et al., America’s care of serious illness: A state-by-state report card on access to palliative care in our nation’s hospitals, 14 J. Palliat. Med. 10, 1094–1096 (2011)). [18] Medical Aid in Dying Act, A.995-A, N.Y. St. Assembly. (2023), available at https://legislation.nysenate.gov/pdf/bills/2023/A995A [19] See also, Ben Colburn, Disability‐based Arguments against Assisted Dying Laws, 36 Bioethics 680 (2022) (cataloging research in multiple countries and concluding that “there is no evidence that assisted dying laws have a disproportionate effect on people with disabilities”). https://doi.org/10.1111/bioe.13036 [20] Eyder Peralta, As Planned, Right-To-Die Advocate Brittany Maynard Ends Her Life, NPR (Apr. 3, 2014), https://www.npr.org/sections/thetwo-way/2014/11/03/361094919/as-planned-right-to-die-advocate-brittany-maynard-ends-her-life (Activist Brittany Maynard moved to Oregon after she was diagnosed with a malignant brain tumor, because her home state did not permit MAiD at the time). [21] Ending life care is defined as the final stage of the end-of-life care continuum, where the patient chooses to end their life as a means to end their suffering or unacceptable quality of life. [22] Palliative sedation is defined as “the use of medications to induce decreased or absent awareness in order to relieve otherwise intractable suffering at the end of life,” and it carries a risk of hastening death. Molly L. Olsen, Keith M. Swetz & Paul S. Mueller, Ethical Decision Making With End-of-Life Care: Palliative Sedation and Withholding or Withdrawing Life-Sustaining Treatments, 85 Mayo Clin Proc 949 (2010). https://doi.org/10.4065/mcp.2010.0201 [23] E.g. Disability Rights Toolkit for Advocacy Against Legalization of Assisted Suicide, Not Dead Yet, https://notdeadyet.org/disability-rights-toolkit-for-advocacy-against-legalization-of-assisted-suicide (last visited Dec. 8, 2023) (describing palliative sedation as “a legal solution to any remaining painful and uncomfortable deaths; one that does not raise the very serious hazards of legalizing assisted suicide”); Testimony of CDR’s Kathryn Carroll, Esq. Opposing NY Assisted Suicide Bill A2383A, Not Dead Yet (Apr. 23, 2018), https://notdeadyet.org/testimony-of-cdrs-kathryn-carroll-esq-opposing-ny-assisted-suicide-bill-a2383a. [24] Voluntarily Stopping Eating and Drinking: A Compassionate, Widely-Available Option for Hastening Death, (Timothy E. Quill et al. eds., 2021). https://doi.org/10.1093/med/9780190080730.001.0001 [25] This is not to say that MAiD and VSED are ethically identical. Different writers have articulated various reasons why MAiD and VSED are meaningfully different and meaningfully similar. Here we distinguish the potential for abuse, as this is the argument that persists among MAiD opponents, For a broader discussion on the ethics of VSED and how it compares to MAiD, see Voluntarily Stopping Eating and Drinking: A Compassionate, Widely-Available Option for Hastening Death, (Timothy E. Quill et al. eds., 2021). https://doi.org/10.1093/med/9780190080730.001.0001 [26] Id.; see also David N. Hoffman and Judy Schwarz, Can Patients Choose to Stop Eating–Even If They Have Dementia–and Can Health Care Facilities Get Paid for Taking Care of Them? Ethics and Reimbursement at the End of Life (Am. Health L. Ass’n Conf. on Long Term Care and the Law 2020). [27] Health Law Section: Duties, Rights & the Law at the End of Life (2019), NY St. Bar Assoc. (Nov. 8, 2019), https://nysba.org/products/health-law-section-duties-rights-the-law-at-the-end-of-life-2019/. [28] Id. [29] CDR still does not appear to have articulated a position on VSED. CDR is a major and vocal opponent of MAiD legislation in NY with considerable resources (they state their projected 2010 budget was approximately $29,000,000). About Us, Center for Disability Rights, https://cdrnys.org/about/. [30] Vacco v. Quill, 521 U.S. 793 (1997) (holding that there is no equal protection violation when N.Y. law criminalized assisted-suicide but permitted removal of life-support systems). [31] Health Law Section: Duties, Rights & the Law at the End of Life (2019), supra note 5. [32] Id. [33] Id. [34] Ben Colburn, Disability‐based Arguments against Assisted Dying Laws, 36 Bioethics 680 (2022) (providing evidence that “that people with disabilities, and disability rights organizations, have diverse views on the question of whether assisted dying should be legal”). https://doi.org/10.1111/bioe.13036 [35] Us for Autonomy, https://www.usforautonomy.org (last visited Sep 10, 2023); see also, Kathryn L. Tucker, Building Bridges Between the Civil Rights Movements of People with Disabilities and Those with Terminal Illness, 78 U. of Pitt. L. Rev. 329 (2017) (collecting and describing amici participation by disability advocates supporting end-of-life liberty). https://doi.org/10.5195/lawreview.2017.473 [36] E.g., USA/National Public Opinion Survey, Susquehanna Polling & Research, Inc. (Feb. 2023),https://d31hzlhk6di2h5.cloudfront.net/20230307/2e/9e/21/14/d37db7887f3f349202ae6f31/Raben_Crosstabulation_Report_2023.FINAL%20(1).pdf ).