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Marriages among people with disabilities in 19th-century Sweden: marital age and spouse’s characteristics

VIKSTRÖM, Lotta
HAAGE, Helena
HÄGGSTRÖM LUNDEVALLER, Erling
2020

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While marrying was an expected event in 19th-century Western society and has been subject to much historical research, there are few studies on how disabilities influenced people’s marriage patterns and spouse selection. The aim of this analysis is to contribute clarification on this issue by examining with whom disabled men and women married and the marital age and socio-demographic characteristics of them and their spouses. In total, 188 disabled individuals born in the first half of the 19th century and who married in the Sundsvall region, Sweden, are studied. The results reveal that disabled men and women did not marry each other, and they entered into marriage at a slightly higher age than the average, although there was usually no marked age gap between them and their spouse. Endogamous patterns were primarily found regarding the socio-spatial background of the two spouses. This analysis is one of the few studies identifying the mar- riages among a comparatively large number of disabled people using demographic data. Their participation in the partner pool highlight their agency historically and emphasize that disability did not lead to distance from social life in past society.

 

 

Teachers’ strategies for enhancing shy children's engagement in oral activities: necessary, but insufficient?

NYBORG, Geir
MJELVE, Liv Heidi
EDWARDS, Anne
CROZIER, W R
2020

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Shy children can present challenges for teachers aiming at inclusive classrooms. Their educational attainments can be lower than their peers, they may have difficulties in adjustment to school and they can be at risk of meeting clinical criteria for social anxiety disorder. One recurrent finding is that they are often quiet across a range of school situations. The study reported here focused on teachers’ strategies to engage shy students in frequently occurring oral activities, such as group work, in elementary school classrooms. Data were gathered through post-observation stimulated-recall interviews with eight teachers who had experience of success with shy students and three focus groups with 11 similarly experienced teachers. The analysis examined teachers’ actions with these children to enhance their visible engagement in activities that require oral participation. The findings suggest that although teachers attended to the psychosocial aspects of student engagement, there was little emphasis on the pedagogic purposes of oral activities with these children. We conclude that more attention should be paid to the academic aspects of oral activities when aiming at inclusion for shy children.

Inclusion through folk high school in Sweden – the experience of young adult students with high-functioning autism

HUGO, Martin
HEDEGAARD, Joel
January 2020

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Purpose: The purpose of this study is to provide a description of the learning environment at Folk High School for participants with high-functioning autism and to examine their learning experience at Folk High School.

 

Methods: A qualitative interview study was conducted with 21 participants who were enrolled at Folk High School which had been adapted to suit young adults with high-functioning autism. The interviews were analysed by means of a thematic content analysis which resulted in the identification of 6 themes related to learning experiences at Folk High School.

 

Results: The participants enjoyed themselves and felt secure at Folk High School. They felt that they and their academic endeavours were suitably recognised, acknowledged, and understood. They reported that the teaching was suitably adapted for them and they felt that they could succeed in their studies. A frequent report that they made concerned their experience of clear structures in the teaching process and its predictability. The participants stated that Folk High School has the ability to satisfy each participant’s needs, which entailed lower levels of perceived stress than what they had experienced in their previous schooling. The participants experienced personal development during their time at Folk High School.

 

Conclusions: Folk High School, and its special character, is able to successfully satisfy the needs of participants with high-functioning autism. Many of the participants, for the first time in their lives, experienced a sense of inclusion in an educational system and felt that they could succeed in their studies. However, there exists a risk that they become institutionalised, which entails that the participants function well primarily in Folk High School’s safe and caring environment.

What I think of school: perceptions of school by people with intellectual disabilities

VALENTIM, António
VALENTIM, Joaquim Pires
2019

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For people with intellectual disabilities who do not enter the labour market, school is usually the main chapter of their socialization with the wider society. Nevertheless, little is known about their long-term perceptions of this period. We conducted interviews and focus groups on the school experiences of 16 Portuguese adults with intellectual disabilities. Results show differences between older and younger participants in their accounts of social relations and educational methods, which result from changes in special educational policies in Portugal. Overall, members of both groups evaluate their school experience positively. Our results indicate that although there is a move towards more inclusive schools, discrimination is still prevalent. These results are discussed in terms of their psychosocial consequences, as well as their implications for educational policies, and inclusion. This study contributes to a better understanding of the school experiences of people with intellectual disabilities and how policies impact them.

Instating settings of emergency education in Vienna: temporary schooling of pupils with forced migration backgrounds

PROYER, Michelle
BIEWER, Gottfried
KREUTER, Linda
WEIß, Jekaterina
2019

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In the year 2015, Austria was one of the main European destinations of displaced persons. According to education authoritiesaround 15,000 children with a forced migration background of school age who arrived in Austria over the course of a few months from late2015 to the beginning of 2016 called for immediate and partly temporary solutions. Due to Austrian legislation and unlike other countries,every child living in Austria between the ages of six to fifteen (or for nine years of schooling) is entitled to receive compulsory education. Though the school administration of Vienna generally promotes an inclusive approach to education in regular schools, schools inneighbourhoods with a large refugee population were reportedly unable to provide appropriate and adequate education for all children. Inresponse, the local school authority in Vienna decided to establish temporary classrooms in refugee accommodations. This article describesand analyses the emergence of new educational structures from the point of view of university students and lecturers who took part in theone and a half years of its implementation. The article thereby aims to document specific perspectives on educational emergency measuresat a certain point of time. In both the primary and secondary sectors, the emergence of a new temporary field of specialised and exceptional education were observed and recorded in a thick description of dynamic processes of trans-institutional, trans-organisational, transprofessional, communal, and individual development. Thus, the article presents a multifaceted picture of problems in refugee education under exceptional circumstances. The findings illustrate how insufficient educational opportunities for those falling outside the age of compulsory schooling – in particular, preschool children as well as youth older than fifteen – diminish possibilities for the inclusion of these children within and beyond education.

Teachers talk on student needs: exploring how teacher beliefs challenge inclusive education in a Norwegian context

AAS, Hanne Kristin
2019

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This study explores teacher talk in the early phase of a project in a Norwegian elementary school where Lesson Study is used as a method for professional development. The study focuses on inclusion and aims to explore what beliefs about student needs and teacher role and responsibilities become evident, and how these beliefs can challenge development towards a more inclusive practice. To this end, content analysis is applied to audio recordings of teacher teams’ planning meetings. Despite an overall positive attitude towards inclusion, and inclusive structures in the school, findings point at factors in teachers’ beliefs that can challenge the inclusion process. These factors are: student needs understood as individual problems, adaptation understood as individualised and laborious and a limited view on teacher role, where their responsibility mainly regard academic learning.

The impact of disability on partnership formation in Sweden during 1990-2009

NAMATOVU, Fredinah
HÄGGSTRÖM LUNDEVALLER, Erling
VIKSTRÖM, Lotta
2019

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Evidence suggests that disability negatively affects people’s propen- sity to find a partner. Persons with disabilities that eventually find a partner do so later in life compared to the average population. There is a lack of studies on the differences in partnership opportu- nities for persons with disabilities compared to those without dis- abilities in Sweden. The aim of this study is to assess the impact of disability on partnership formation and to assess whether partner- ship formation varies as a function of individual demographic and socio-economic factors. We use nationwide data available in the Swedish Initiative for Research on Microdata in Social and Medical Sciences (Umeå SIMSAM Lab). We follow persons born from 1973 to 1977 when they were from 16 to 37 years of age and analyze their data using logistic regression. Our findings indicate that regardless of whether a person started to receive a disability pension at an early age or later, it was associated with lower odds for partnership forma- tion. For persons who started receiving disability pension from 16 to 20 years of age, chances for partnership formation reduced with increase in age of partnership. Individuals that started to receive disability pension later were more likely to form partnership prior to receiving disability pension. Partnership formation was less likely among persons born outside Sweden, in persons with mothers born outside Sweden, in individuals born by unmarried mothers and in persons, whose mothers had a high level of education. Partnership was high among women and among persons who had many mater- nal siblings. In conclusion, receiving disability pension was associated with reduced chances for partnership formation. Receiving disability pension might imply financial constraints that negatively influence partnership formation supporting Oppenheimer’s theory on the eco- nomic cost of marriage and the uncertainty hypothesis.

An observation study of power practices and participation in group homes for people with intellectual disability

SVANELÖV, Eric
2019

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This study explored how participation constitutes and is constituted by practices of power in group homes for people with intellectual disability. The study used disciplinary power as theoretical perspective and was based on 50 h of observation in two group homes with a total of 15 residents. The analysis identifies practices of power and their relationship to individual agency and participation. The results show that institutional structures construct practices of power that define codes of conduct for the group home residents and their possibility for participation. This study offers implications for the daily lives of residents in group homes for people with intellectual disability.

Critique of deinstitutionalisation in postsocialist Central and Eastern Europe

MLADENOV, Teodor
PETRI, Gabor
2019

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In this paper, we explore critically deinstitutionalisation reform, focusing specifically on the postsocialist region of Central and Eastern Europe (CEE). We argue that deinstitutionalisation in postsocialist CEE has generated re-institutionalising outcomes, including renovation of existing institutions and/or creation of new, smaller settings that have nevertheless reproduced key features of institutional life. To explain these trends, we first consider the historical background of the reform, highlighting the legacy of state socialism and the effects of postsocialist neoliberalisation. We then discuss the impact of ‘external’ drivers of deinstitutionalisation in CEE, particularly the European Union and its funding, as well as human rights discourses incorporated in the UN Convention on the Rights of Persons with Disabilities. The analysis is supported by looking at the current situation in Hungary and Bulgaria through recent reports by local civil society organisations. In conclusion, we propose some definitional tactics for redirecting existing resources towards genuine community-based services.

Feeling controlled or being in control? Apps for self-management among older people with neurological disability

WINBERG, C
KYLBERG, M
PETTERSSON, C
HARNETT, T
HEDVALL, P-O
MATTSSON, T
LEXELL, E Månsson
2019

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Purpose: 

The aim of this paper was to describe how people living with a neurological disability such as multiple sclerosis, Parkinson’s disease and stroke reason regarding using apps to facilitate self-management in everyday life.

 

Material and methods: 

A qualitative research approach with a focus group methodology was used. The sample comprised 16 participants, 11 men and 5 women, with an average age of 64 years (ranging from 51–80 years). Six participants were diagnosed with multiple sclerosis, six with Parkinson’s disease and four with stroke. Data were analyzed using thematic analysis, which is a method for identifying, analyzing and reporting patterns.

 

Results:

 The results formed two themes. The first theme “using apps to have control of my health” comprises two subthemes; “monitor and take responsibility for a healthy lifestyle” and “compensate to facilitate everyday life”. The second theme “using the app as a tool and means for communication” also comprised two subthemes; “dare to trust the app” and “feeling safe when sharing information with health care professionals”.

 

Conclusions:

 The use of apps put increased responsibility on the person and had the possibility to make them more involved in their own care. The use of an app can facilitate a healthy lifestyle and help to monitor disease-specific symptoms. In order to be able to use apps for communication with the health care sector legislation and safety issues need to be considered.

Exploring barriers to physical activity of patients at the internal medicine and surgical wards: a retrospective analysis of continuously collected data

KOENDERS, Niek
WEENK, Mariska
VAN DE BELT, Tom H
VAN GOOR, Harry
HOOGEBOOM, Thomas J
BREDIE, Sebastian J H
November 2019

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Purpose: To analyse physical activity of patients during their hospital stay and to explore the relationship between physical activity and barriers to physical activity.

 

Methods: This was a secondary analysis of physical activity data for patients admitted to the internal medicine and surgical wards. Physical activity data, collected with a wireless patch sensor, was operationalized as time spent lying, sitting/standing, and walking. Barriers to physical activity included patients’ pain levels, the use of urinary catheters, intravenous tubing, oxygen lines, drains, and level of dependence. Regression analysis explored the relationship between physical activity and barriers to physical activity.

 

Results: Physical activity data were collected in 39 patients (aged 27–88, mean 54 years) during hospital stay. Patients were admitted for a median of 10 d (interquartile range [IQR]: 7–15 d). These patients were lying for a median of 12.1 h (7.6–17.7), sitting/standing 11.8 h (6.3–15.7), and walking 0.1 h (0–0.3) per day. Time lying during the day related to pain levels (β = 0.4 h per unit increase in pain, p < 0.01) and drain use (β = 3.1 h, p < 0.01).

 

Conclusions: Patients spent the most time during the hospital stay lying in bed. Improved pain management and decreased drain use may be worth exploring to increase inpatient physical activity.

Gaps in access and school attainments among people with and without disabilities: a case from Nepal

EIDE, Arne H
LAMICHHANE, Kamal
Neupane, Shailes
November 2019

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Aim: Many children with disabilities in low- and middle-income countries do not attend school and one-third are out of school. In order to ensure that education is for all including children with disabilities, research is needed on barriers to schooling to identify targets for intervention. The study will examine the determinants of school achievement among persons with and without disabilities as well as among each type of impairment.

 

Methods: The study will utilize data from a recent national, representative household survey on living conditions among persons with and without disabilities. The individual level data used in this article comprise 2123 persons with and 2000 persons without disabilities.

 

Results: The results show that an alarmingly high proportion of persons in Nepal have not accessed formal education, with access being significantly lower among persons with disabilities. While the results may be influenced by the assumed relationship between disability and poverty, results from analyzing the cross-sectional data cannot be conclusive on the influence of disability vs. poverty in determining differences in access and school attainments. Increased environmental barriers, higher age, rural location, and increased levels of disability were found to be associated with lower educational achievement. Pronounced differences in access to education were found between impairment types, with individuals with physical impairments achieving the highest level and individuals with multiple impairments, hearing and mental impairments achieving lowest.

 

Conclusions: It is necessary both to strengthen the entire educational sector and at the same time allocate resources that will ensure that all children are on board and that particular efforts are implemented to cater for those who are easily side-lined.

The concept of welfare technology in Swedish municipal eldercare

FRENNERT, Susanne
BAUDIN, Katarina
September 2019

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Purpose: An ageing population presents a challenge for municipal eldercare in Sweden due to difficulties recruiting staff and there being a strained economy. A strategy involving welfare technology is presented as one such solution. An important group to carry out this strategy involves those who work with welfare technology in municipal eldercare. In this paper we describe their perception of welfare technology, and the challenges and opportunities they perceive in utilizing it.

 

Methods: A self-administered online questionnaire was distributed to all Swedish municipalities and answered by 393 respondents. Analyses show that the respondents were representative of the different professions who work with welfare technology within municipal eldercare.

 

Results: Welfare technology was perceived as being more reliable and safer than humans with regards to supervisions and reminders. The respondents acknowledged factors that slowed down the implementation of welfare technology in municipal eldercare organizations, such as resistance to change, lack of finances, lack of supporting evidence, lack of infrastructure, high staff turnover, difficulties with procurement and uncertainties about responsibility and laws.

 

Conclusions: We found that the people who work with and make decisions about welfare technology in municipal eldercare organizations were generally very positive about the deployment and use of such technology, but there appear to be problems within municipal eldercare organizations to realize this vision. The lack of structured implementation processes and coherent evaluation models indicates inequality of the access to welfare technology and, as a result, even though Swedish eldercare is publicly funded, the availability of welfare technologies and their usage differ between municipalities.

Gender, sexuality and relationships for young Australian women with intellectual disability

O’SHEA, A
FRAWLEY, P
2019

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Gender has often been overlooked in the lives of people with intellectual disability, resulting in a limited understanding and service response. This is in part due to a lack of knowledge about the way people with intellectual disability negotiate and build a gendered identity. In this article we present research undertaken with six young women with an intellectual disability who worked with the first researcher to co-develop some stories from their lives. We show how, facilitated by an innovative method which focused on meaningful engagement, the women told stories of richly gendered lives and subjectivities. Their stories showed how gender can be a desired and productive subjectivity, and how consideration of gender can help to identify resistance and agency in their lives. Their stories illustrate how gender is necessary in forming a comprehensive understanding of the lives of women with intellectual disability.

Equal reproduction rights? The right to found a family in United Nations’ disability policy since the 1970s

VAN TRIGT, Paul
2019

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With the adoption of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2006, disability as an issue of human rights and international law can no longer be ignored. The history of this convention can be traced back to the 1970s, when disability was framed in United Nations (UN) declarations as a human-rights issue at the global level. One of the recurrent topics of debate during this trajectory was the right of people with dis- abilities to found a family. This right was far from self-evident and was evaluated very differently by various stakeholders.

This study follows the right to have a family in UN disability policy since the 1970s. The history of the family in relation to disability at the global level has been a neglected field of enquiry compared to other concepts such as gender and race. This study investigates how and why the right to found a family was framed in the Declarations on the Rights of Mentally Disabled Persons (1971) and Disabled Persons (1975), the International Year of Disabled Persons (1981), the International Decade of Disabled Persons (1983 − 1992), the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1993) and the UNCRPD in 2006.

The trajectory of the right of people with disabilities to found a family that emerges from these cases shows a change in the 1990s from a social-policy to a human-rights approach towards disability – which reflects a broader trend in global and local histories of human rights. In the case of reproductive rights of people with disabilities this change meant that the emphasis was laid more on providing a legal protection for the individual against the interference of others (so-called negative freedom) than on enhancing the opportunities for disabled people to practice their (positive) freedom.

Therapy-related stress in parents of children with a physical disability: a specific concept within the construct of parental stress

BECKERS, Laura W M E
SMEETS, Rob J E M
VAN DER BURG, Jan J W
August 2019

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Purpose: The aim of this article is to conceptualise the phenomenon of therapy-related parental stress in parents of children with a physical disability.

 

Methods: Three models related to parental stress were reviewed, i.e., general parental stress, burden of caregiving in parents of children with physical disabilities, and experiences of these parents with their child’s therapy.

 

Results: The proposed definition of therapy-related parental stress is “the subjective stress and subsequent changes of functioning and health experienced by a parent of a child with a physical disability in response to paramedical therapies (i.e., physical, occupational, and/or speech and language therapy)”. A theoretical model is proposed to describe the process of therapy-related parental stress. Available questionnaires will most likely not be valid and responsive to capture the (changes in) stress parents experience related to therapy their child receives.

 

Conclusions: This article provides a first definition of therapy-related parental stress and a theoretical model to visualise the processes with regard to this topic. Empirical testing of the presented components and their coherence is needed to confirm or improve the model. A questionnaire that specifically measures the concept of therapy-related parental stress is needed, along with evaluating therapy-related parental stress in clinical practice and research.

Growing up with a disability following paralytic poliomyelitis: experiences from persons with late effects of polio

SJODAHL HAMMARLUND, Catharina
LEXELL, Jan
BROGARDH, Christina
August 2019

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Purpose: To describe the experiences of growing up after acute paralytic poliomyelitis and strategies used to adapt to the new situation.

 

Methods: Seven women and seven men (mean age 70 years, min–max 61–78 years) with late effects of polio, who had contracted paralytic polio in their childhood. Data were collected using semi-structured interviews, transcribed verbatim, and analyzed by systematic text condensation.

 

Results: Memories of contracting acute paralytic poliomyelitis involved being immobilized and sent away from home for surgical and physiotherapeutic treatment. Growing up in a social context that was often tough and unfriendly resulted in the development of strategies, such as optimistic thinking, trying to blend in, trusting one’s ability to manage, and to handle the preconceptions and expectations of others. At the onset of late effects of polio, some of these strategies were still functioning, whereas overachieving, disregarding pain, and weariness were not.

 

Conclusion: The challenges of growing up with a disability following paralytic polio led to the development of various psychological strategies for managing daily life. By understanding these experiences and strategies, knowledge may be gained in assisting rehabilitation professionals to better support persons with late effects of polio in adapting to the new situation.

What is good personal assistance made of? Results of a European survey

MLADENOV, Teodor
2019

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This article presents the results of a survey on personal assistance (PA) for disabled people, conducted among PA users and members of the independent living movement in Europe. The survey was developed and implemented in the spirit of emancipatory disability research, and was informed by the social model of disability and the independent living philosophy. Participants were asked to assess a series of characteristics of PA in terms of their impact on users’ choice and control. Their responses help identify which characteristics of PA are considered to be enablers of choice and control, which characteristics are perceived as barriers and which characteristics elicit disagreement or lack of consensus among PA users and members of the independent living movement in Europe. Plans for using the results of the survey to develop a tool for evaluating PA schemes are also discussed.

Design of the user interface for “Stappy”, a sensor-feedback system to facilitate walking in people after stroke: a user-centred approach

JIE, Li-Juan
JAMIN, Gaston
SMIT, Kate
BEURSKENS, Anna
BRAUN, Susy
2019

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Introduction: 

Sensor-feedback systems can be used to support people after stroke during independent practice of gait. The main aim of the study was to describe the user-centred approach to (re)design the user interface of the sensor feedback system “Stappy” for people after stroke, and share the deliverables and key observations from this process.

 

Methods: 

The user-centred approach was structured around four phases (the discovery, definition, development and delivery phase) which were fundamental to the design process. Fifteen participants with cognitive and/or physical limitations participated (10 women, 2/3 older than 65). Prototypes were evaluated in multiple test rounds, consisting of 2–7 individual test sessions.

 

Results: 

Seven deliverables were created: a list of design requirements, a personae, a user flow, a low-, medium- and high-fidelity prototype and the character “Stappy”. The first six deliverables were necessary tools to design the user interface, whereas the character was a solution resulting from this design process. Key observations related to “readability and contrast of visual information”, “understanding and remembering information”, “physical limitations” were confirmed by and “empathy” was additionally derived from the design process.

 

Conclusions: 

The study offers a structured methodology resulting in deliverables and key observations, which can be used to (re)design meaningful user interfaces for people after stroke. Additionally, the study provides a technique that may promote “empathy” through the creation of the character Stappy. The description may provide guidance for health care professionals, researchers or designers in future user interface design projects in which existing products are redesigned for people after stroke.

Supporting the enactment of inclusive pedagogy in a primary school

BRENNAN, Aoife
KING, Fiona
TRAVERS, Joe
2019

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While inclusion has generally been accepted as orthodoxy, a knowledge – practice gap remains which indicates a need to focus on inclusive pedagogy. This paper explores how teachers in the Republic of Ireland primary school were supported to develop inclusive pedagogy to meet the needs of learners with special educational needs (SEN). It is underpinned by a conceptual framework which combines an inclusive pedagogical approach and key principles of effective professional development (PD) arising from the literature, which informed the development of a professional learning community (PLC) for inclusive practice in a primary school. The impact of the PD on teachers’ professional practice was explored using an evidence-based evaluation framework. Analysis of interview and observation data evidenced that engagement with inclusive pedagogy in a PLC, underpinned by critical dialogue and public sharing of work, positively impacted teacher attitudes, beliefs, efficacy and inclusive practice. This research offers a model of support for enacting inclusive pedagogy.

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