Guerrilla art and the quest for equality: the contribution of men with intellectual disabilities to equality work.

Á undanförnum misserum hafa orðið breytingar í umræðunni um jafnrétti þar sem áhersla er lögð á jafnrétti allra í stað þess að beina sjónum fyrst og fremst að jafnrétti kynjanna. Þrátt fyrir þessar breytingar hefur fatlað fólk, og þá sérstaklega fólk með þroskahömlun, áfram verið jaðarsett í íslenskri jafnréttis- og hagsmunabaráttu. Þar sem konur með þroskahömlun hafa verið meira áberandi í hagsmunabaráttu fatlaðs fólks er mikilvægt að beina sjónum að því hvernig hægt er að virkja karla með þroskahömlun til vitundar um jafnréttismál og þátttöku í jafnréttisstarfi. Í greininni verður fjallað um aðgerðir tveggja karla með þroskahömlun í þágu jafnréttis sem fóru fram í miðbæ Reykjavíkur sumarið 2016. Aðgerðirnar voru liður í verkefninu Jafnrétti fyrir alla sem styrkt var af Jafnréttissjóði og Rannsóknasjóði HÍ og hafði það að markmiði að skoða viðhorf karla með þroskahömlun til jafnréttismála og leita leiða til að virkja þá til þátttöku í jafnréttisstarfi. Aðgerðirnar voru í anda skærulistar (e. guerrilla art) sem sköpuð er í leyfisleysi þegar enginn sér til og felur í sér ádeilu á ríkjandi menningu og samfélagsskipan. Tilgangurinn er að vekja almenning til vitundar um samfélagsleg málefni. Í greininni er aðgerðunum lýst og hvernig þátttakendur sköpuðu sér rými í miðbænum þar sem þeir höfðu skilgreiningarvaldið og trufluðu gangandi vegfarendur sem stöldruðu við til að skoða veggspjöld, lásu falin skilaboð eða skrifuðu í ferðadagbækur. Aðgerðirnar voru liður í samvinnurannsókn þar sem karlar með þroskahömlun og ófatlaður háskólakennari unnu náið saman og allir aðilar voru virkir þátttakendur í rannsóknarferlinu. Samvinnurannsóknum er ætlað að vera valdeflandi og gefa fólki með þroskahömlun tækifæri til að hafa áhrif á það hvernig fjallað er um líf þess og reynslu. Það takmarkar hins vegar valdið að hafa ekki raunverulegan aðgang að fræðasamfélaginu. Ráðstefnur eru gjarnan haldnar í óaðgengilegu húsnæði, ráðstefnugjöldin eru há og fyrirlesarar nota óþarflega mörg og flókin orð, og hið sama á við um nefndarstörf. Það er því mikilvægt að leita annarra og óhefðbundinna leiða til að gera sig gildandi innan fræðasamfélagsins og jafnréttisbaráttunnar, en skærulistin var einmitt liður í því.People with intellectual disabilities have been marginalized within the disability movement and not had access to ideas on gender equality or equality work (Björnsdóttir and Traustadóttir, 2010). This has led to an overemphasis on traditional gender roles within the special education and support systems where gender/sexuality has been normalized in the lives of people with intellectual disabilities (Björnsdóttir, Stefánsdóttir and Stefánsdóttir, 2017). It has been recognized that disabled women are subject to multiple discrimination and are at greater risk of violence and abuse than non-disabled women or men (Snæfríðar- and Gunnarsdóttir, and Traustadóttir, 2015). Consequently, there has been more focus on the lived experiences of disabled women within the academic fields of disability studies and gender studies than on the lives of disabled men. However, research suggests that men with intellectual disabilities are denied opportunities equal to others to develop their gender and sexual identities and are often considered to be asexual eternal children or sexual predators who need to be managed and controlled (Björnsdóttir, Stefánsdóttir and Stefánsdóttir, 2017). In January 2016, two men with intellectual disabilities were hired by the University of Iceland’s School of Education to work on a research project which aims to explore the access of men with intellectual disabilities to ideas on gender equality and equality work. This article discusses the actions of two men with intellectual disabilities who performed guerrilla art, in downtown Reykjavík, in the summer of 2016, in their quest for equality. Guerrilla art is created anonymously, performed without permission and critiques the dominant culture and social order. The purpose is to raise public awareness about various social issues. The article describes the actions and explains how the men are both contributing to equality work and disability activism. In recent years equality work in Iceland has expanded from a strict focus on gender equality to broader notions of diversity and human rights (Þorvaldsdóttir, 2014). The guerrilla project was initially focused on gender equality but developed into a broader notion of equality where disability, gender, and other categories of oppression intersect. The men are, therefore, not in the role of self-advocates per se, but rather as activists demanding equality for all. The article describes how the men carved out space in Reykjavík’s city centre for their activism where they had the power to define intellectual disabilities in relation to equality. Their presence and their actions in the city centre were disrupting; pedestrians stopped and looked at their posters, read hidden messages in library books, wrote their thoughts in travel journals and shared their experience on social media. The French philosopher Michel De Certeau (1984) distinguishes between place and space. The dominant social groups strategically organize places of order and stability. An example of a place is the University of Iceland, the campus with buildings, offices, classrooms and laboratories, departments and programs managed by the staff, laws and regulations. Strict rules state who have access to university life, academics and activities. Another example of a place is downtown Reykjavik where the guerrilla art was performed. There are buildings, streets, sidewalks and walkways and we are supposed to walk along the sidewalks and cross streets on walkways. De Certeau (1984) called it “tactic” when people would use the place wrongly, for example by walking on the street. The guerrilla art was their tactic and the men used it to carve out space where they had the power to disrupt the existing social order. They are disrupting by asking pedestrians to stop and reflect on their society. Who are welcome? Who have access? What is equality? The disruption transformed the place into a space for equality work. The guerrilla art project is part of an ongoing inclusive research where men labelled as having intellectual disabilities collaborate on research with a non-disabled university teacher. In inclusive research, people with intellectual disabilities are not viewed as passive research subjects and they have opportunities to participate in the research process and often take on valued social roles as co-researchers. Inclusive research is supposed to be empowering for people with intellectual disabilities since they get an opportunity to contribute on the discussion of disability and acquire control over how people with intellectual disabilities are presented in research (Walmsley and Johnson (2003). However, barriers to full inclusion to academia, the place of research, are oppressive. Conferences are often held in inaccessible buildings, conference fees are expensive and speakers commonly use an excessive number of complex words and the same applies to committee meetings. It is, therefore, important to look for other non-traditional ways to make their presence felt within academia, and the guerrilla art event was part of that. By collaborating on this academic article we are also carving space within academia where people with intellectual disabilities are recognized for their contribution to the generation of knowledge about equality and disability. However, we also fear that this article has reduced the empowering experience of creating guerrilla art to something different, a traditional academic construction which is consequently inaccessible to most people with intellectual disabilities. We have been funded by research funds and are obligated to produce our research outcomes and hopefully we are also disrupting academia by sharing this collaborative knowledge production.Peer Reviewe

Development of a prognostic model of COVID-19 severity : a population-based cohort study in Iceland

© 2022. The Author(s).BACKGROUND: The severity of SARS-CoV-2 infection varies from asymptomatic state to severe respiratory failure and the clinical course is difficult to predict. The aim of the study was to develop a prognostic model to predict the severity of COVID-19 in unvaccinated adults at the time of diagnosis. METHODS: All SARS-CoV-2-positive adults in Iceland were prospectively enrolled into a telehealth service at diagnosis. A multivariable proportional-odds logistic regression model was derived from information obtained during the enrollment interview of those diagnosed between February 27 and December 31, 2020 who met the inclusion criteria. Outcomes were defined on an ordinal scale: (1) no need for escalation of care during follow-up; (2) need for urgent care visit; (3) hospitalization; and (4) admission to intensive care unit (ICU) or death. Missing data were multiply imputed using chained equations and the model was internally validated using bootstrapping techniques. Decision curve analysis was performed. RESULTS: The prognostic model was derived from 4756 SARS-CoV-2-positive persons. In total, 375 (7.9%) only required urgent care visits, 188 (4.0%) were hospitalized and 50 (1.1%) were either admitted to ICU or died due to complications of COVID-19. The model included age, sex, body mass index (BMI), current smoking, underlying conditions, and symptoms and clinical severity score at enrollment. On internal validation, the optimism-corrected Nagelkerke's R2 was 23.4% (95%CI, 22.7-24.2), the C-statistic was 0.793 (95%CI, 0.789-0.797) and the calibration slope was 0.97 (95%CI, 0.96-0.98). Outcome-specific indices were for urgent care visit or worse (calibration intercept -0.04 [95%CI, -0.06 to -0.02], Emax 0.014 [95%CI, 0.008-0.020]), hospitalization or worse (calibration intercept -0.06 [95%CI, -0.12 to -0.03], Emax 0.018 [95%CI, 0.010-0.027]), and ICU admission or death (calibration intercept -0.10 [95%CI, -0.15 to -0.04] and Emax 0.027 [95%CI, 0.013-0.041]). CONCLUSION: Our prognostic model can accurately predict the later need for urgent outpatient evaluation, hospitalization, and ICU admission and death among unvaccinated SARS-CoV-2-positive adults in the general population at the time of diagnosis, using information obtained by telephone interview.Peer reviewe

A population-based survey of FBN1 variants in Iceland reveals underdiagnosis of Marfan syndrome

Publisher Copyright: © 2023, The Author(s).Marfan syndrome (MFS) is an autosomal dominant condition characterized by aortic aneurysm, skeletal abnormalities, and lens dislocation, and is caused by variants in the FBN1 gene. To explore causes of MFS and the prevalence of the disease in Iceland we collected information from all living individuals with a clinical diagnosis of MFS in Iceland (n = 32) and performed whole-genome sequencing of those who did not have a confirmed genetic diagnosis (27/32). Moreover, to assess a potential underdiagnosis of MFS in Iceland we attempted a genotype-based approach to identify individuals with MFS. We interrogated deCODE genetics’ database of 35,712 whole-genome sequenced individuals to search for rare sequence variants in FBN1. Overall, we identified 15 pathogenic or likely pathogenic variants in FBN1 in 44 individuals, only 22 of whom were previously diagnosed with MFS. The most common of these variants, NM_000138.4:c.8038 C > T p.(Arg2680Cys), is present in a multi-generational pedigree, and was found to stem from a single forefather born around 1840. The p.(Arg2680Cys) variant associates with a form of MFS that seems to have an enrichment of abdominal aortic aneurysm, suggesting that this may be a particularly common feature of p.(Arg2680Cys)-associated MFS. Based on these combined genetic and clinical data, we show that MFS prevalence in Iceland could be as high as 1/6,600 in Iceland, compared to 1/10,000 based on clinical diagnosis alone, which indicates underdiagnosis of this actionable genetic disorder.Peer reviewe

Lipoprotein(a) Concentration and Risks of Cardiovascular Disease and Diabetes

Publisher's version (útgefin grein)Background: Lipoprotein(a) [Lp(a)] is a causal risk factor for cardiovascular diseases that has no established therapy. The attribute of Lp(a) that affects cardiovascular risk is not established. Low levels of Lp(a) have been associated with type 2 diabetes (T2D). Objectives: This study investigated whether cardiovascular risk is conferred by Lp(a) molar concentration or apolipoprotein(a) [apo(a)] size, and whether the relationship between Lp(a) and T2D risk is causal. Methods: This was a case-control study of 143,087 Icelanders with genetic information, including 17,715 with coronary artery disease (CAD) and 8,734 with T2D. This study used measured and genetically imputed Lp(a) molar concentration, kringle IV type 2 (KIV-2) repeats (which determine apo(a) size), and a splice variant in LPA associated with small apo(a) but low Lp(a) molar concentration to disentangle the relationship between Lp(a) and cardiovascular risk. Loss-of-function homozygotes and other subjects genetically predicted to have low Lp(a) levels were evaluated to assess the relationship between Lp(a) and T2D. Results: Lp(a) molar concentration was associated dose-dependently with CAD risk, peripheral artery disease, aortic valve stenosis, heart failure, and lifespan. Lp(a) molar concentration fully explained the Lp(a) association with CAD, and there was no residual association with apo(a) size. Homozygous carriers of loss-of-function mutations had little or no Lp(a) and increased the risk of T2D. Conclusions: Molar concentration is the attribute of Lp(a) that affects risk of cardiovascular diseases. Low Lp(a) concentration (bottom 10%) increases T2D risk. Pharmacologic reduction of Lp(a) concentration in the 20% of individuals with the greatest concentration down to the population median is predicted to decrease CAD risk without increasing T2D risk.Peer Reviewe

A homozygous loss-of-function mutation leading to CYBC1 deficiency causes chronic granulomatous disease

Publisher's version (útgefin grein) Publisher’s note: Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.Mutations in genes encoding subunits of the phagocyte NADPH oxidase complex are recognized to cause chronic granulomatous disease (CGD), a severe primary immunodeficiency. Here we describe how deficiency of CYBC1, a previously uncharacterized protein in humans (C17orf62), leads to reduced expression of NADPH oxidase’s main subunit (gp91phox) and results in CGD. Analyzing two brothers diagnosed with CGD we identify a homozygous loss-of-function mutation, p.Tyr2Ter, in CYBC1. Imputation of p.Tyr2Ter into 155K chipgenotyped Icelanders reveals six additional homozygotes, all with signs of CGD, manifesting as colitis, rare infections, or a severely impaired PMA-induced neutrophil oxidative burst. Homozygosity for p.Tyr2Ter consequently associates with inflammatory bowel disease (IBD) in Iceland (P = 8.3 × 10−8; OR = 67.6), as well as reduced height (P = 3.3 × 10−4; −8.5 cm). Overall, we find that CYBC1 deficiency results in CGD characterized by colitis and a distinct profile of infections indicative of macrophage dysfunction.We wish to thank the family of the two probands, as well as all the other individuals who participated in the study and whose contribution made this work possible.Peer Reviewe

Iceland screens, treats, or prevents multiple myeloma (iStopMM): a population-based screening study for monoclonal gammopathy of undetermined significance and randomized controlled trial of follow-up strategies.

To access publisher's full text version of this article, please click on the hyperlink in Additional Links field or click on the hyperlink at the top of the page marked DownloadMonoclonal gammopathy of undetermined significance (MGUS) precedes multiple myeloma (MM). Population-based screening for MGUS could identify candidates for early treatment in MM. Here we describe the Iceland Screens, Treats, or Prevents Multiple Myeloma study (iStopMM), the first population-based screening study for MGUS including a randomized trial of follow-up strategies. Icelandic residents born before 1976 were offered participation. Blood samples are collected alongside blood sampling in the Icelandic healthcare system. Participants with MGUS are randomized to three study arms. Arm 1 is not contacted, arm 2 follows current guidelines, and arm 3 follows a more intensive strategy. Participants who progress are offered early treatment. Samples are collected longitudinally from arms 2 and 3 for the study biobank. All participants repeatedly answer questionnaires on various exposures and outcomes including quality of life and psychiatric health. National registries on health are cross-linked to all participants. Of the 148,704 individuals in the target population, 80 759 (54.3%) provided informed consent for participation. With a very high participation rate, the data from the iStopMM study will answer important questions on MGUS, including potentials harms and benefits of screening. The study can lead to a paradigm shift in MM therapy towards screening and early therapy.Black Swan Research Initiative by the International Myeloma Foundation Icelandic Centre for Research European Research Council (ERC) University of Iceland Landspitali University Hospita

Genetic variability in the absorption of dietary sterols affects the risk of coronary artery disease.

To access publisher's full text version of this article, please click on the hyperlink in Additional Links field or click on the hyperlink at the top of the page marked DownloadAims: To explore whether variability in dietary cholesterol and phytosterol absorption impacts the risk of coronary artery disease (CAD) using as instruments sequence variants in the ABCG5/8 genes, key regulators of intestinal absorption of dietary sterols. Methods and results: We examined the effects of ABCG5/8 variants on non-high-density lipoprotein (non-HDL) cholesterol (N up to 610 532) and phytosterol levels (N = 3039) and the risk of CAD in Iceland, Denmark, and the UK Biobank (105 490 cases and 844 025 controls). We used genetic scores for non-HDL cholesterol to determine whether ABCG5/8 variants confer greater risk of CAD than predicted by their effect on non-HDL cholesterol. We identified nine rare ABCG5/8 coding variants with substantial impact on non-HDL cholesterol. Carriers have elevated phytosterol levels and are at increased risk of CAD. Consistent with impact on ABCG5/8 transporter function in hepatocytes, eight rare ABCG5/8 variants associate with gallstones. A genetic score of ABCG5/8 variants predicting 1 mmol/L increase in non-HDL cholesterol associates with two-fold increase in CAD risk [odds ratio (OR) = 2.01, 95% confidence interval (CI) 1.75-2.31, P = 9.8 × 10-23] compared with a 54% increase in CAD risk (OR = 1.54, 95% CI 1.49-1.59, P = 1.1 × 10-154) associated with a score of other non-HDL cholesterol variants predicting the same increase in non-HDL cholesterol (P for difference in effects = 2.4 × 10-4). Conclusions: Genetic variation in cholesterol absorption affects levels of circulating non-HDL cholesterol and risk of CAD. Our results indicate that both dietary cholesterol and phytosterols contribute directly to atherogenesis. Keywords: ABCG5/8; Absorption; Dietary cholesterol; Genetics; Phytosterols.Novo Nordisk Foundation University College London Hospital National Institute for Health Research Biomedical Research Centr