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Do experiences and perceptions about quality of care differ among social groups in Nepal? A study of maternal healthcare experiences of women with and without disabilities, and Dalit and non-Dalit women

DEVKOTA, Hridaya Raj
MURRAY, Emily
CLARKE, Andrew
GROCE, Nora
December 2017

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Background
Suboptimal quality of care and disparities in services by healthcare providers are often reported in Nepal. Experience and perceptions about quality of care may differ according to women’s socio-cultural background, individual characteristics, their exposure and expectations. This study aimed to compare perceptions of the quality of maternal healthcare services between two groups that are consistently considered vulnerable, women with disabilities from both the non-Dalit population and Dalit population and their peers without disabilities from both non-Dalit and Dalit communities.

Methods
A cross-sectional survey was conducted among 343 total women that included women with disabilities, Dalits and non-Dalits. Women were recruited for interview, who were aged 15–49 years, had been pregnant within the last five years and who had used maternal care services in one of the public health facilities of Rupandehi district. A 20-item, Likert-type scale with four sub-scales or dimensions: ‘Health Facility’, ‘Healthcare Delivery’, ‘Inter-personal’ and ‘Access to Care’ was used to measure women’s perceptions of quality of care. Chi-square test and t test were used to compare groups and to assess differences in perceptions; and linear regression was applied to assess confounding effects of socio-demographic factors. The mean score was compared for each item and separately for each dimension.

PLoS ONE 12(12): e0188554
https://doi.org/10.1371/journal.pone.0188554

Re-theorising inclusion and reframing inclusive practice in physical education

PENNEY, Dawn
JEANES, Ruth
O'CONNOR, Justen
ALFREY, Laura
2017

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Inclusion remains a key political agenda for education internationally and is a matter that teachers across subject communities and phases of education are challenged to respond to. In physical education specifically, research continues to highlight that current practice often reaffirms rather than challenges established inequities. This paper critically explores the understandings of inclusion that contribute to this situation and addresses the challenge of advancing inclusion in physical education from conceptual and pedagogical viewpoints. DeLuca’s [(2013). “Toward an Interdisciplinary Framework for Educational Inclusivity.” Canadian Journal of Education 36 (1): 305–348] conceptualisation of normative, integrative, dialogical and transgressive approaches to inclusion is employed as a basis for critical analysis of current practice and for thinking afresh about inclusive practice in physical education in relation to curriculum, pedagogy and assessment. Analysis informs the presentation of a set of principles that are designed to assist teachers and teacher educators to transform inclusive practice in physical education and in doing so, realise visions for physical education that are articulated in international policy guidelines and contemporary curriculum developments.

“I Guess that the Greatest Freedom … ”: A Phenomenology of Spaces and Severe Multiple Disabilities

EVENSEN, Kristin Vindhol
STANDAL, Øyvind Førland
2017

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This paper expresses wonder about how bodies in motion can lead towards an understanding of lived meaning in silent lifeworlds. In such lifeworlds, expressions are without words, pre-symbolic, and thus embodied. To address the wonder, phenomenological philosophy and phenomenological methodology were employed to frame an approach that acknowledges lives with disabilities as qualitatively different from, and yet not inferior to, nor less imbued with meaning than, lives without.

The paper focuses on spatiality as decisive in determining possibilities for persons to express their perspectives through a wide range of movements. Movements take place in the continuum between the spatiality of positions as objective bodily sensations and the spatiality of situations as embodied interactions with others and the world. Thus, in order to access the perspectives of students with severe and multiple disabilities, transitions between and movements within different spaces are examined.

Approaching an educational everyday life where students are restricted in the possibilities available to them for moving in and out of spaces, the study reported points to the importance of recognizing the relationship between subjective movements and the spaces enveloping them as what creates a spatiality that is meaningful to the subject. It is accordingly suggested that choosing which spaces to include in educational contexts are formative choices that express a view of humanity. The paper also emphasizes the importance of recognizing temporality as a pedagogical resource when detecting and acting upon students’ changing expressions.

Rituals of knowing: rejection and relation in disability theology and Meister Eckhart

SMITH, Daniel G W
2017

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One of the most powerful claims of disability theology is that the rejection of persons with disabilities somehow correlates with a rejection of God. This ‘correlative rejection’ is, however, frequently just stated rather than explored in detail, something this article therefore seeks to remedy by examining one example of the correlative rejection that draws together the ethical concerns of theologians writing on intellectual disability with Meister Eckhart’s teaching on the human relationship with God. Here, the correla- tive rejection is exposed as an inevitable result of the narrow emphasis on autonomy and rationality in human self-perception which shape the habituated, even ritualised ways that we try to know persons with intellectual disabilities and God. By contrast, truly knowing and relating to persons with intellectual disabilities, God, and finally also ourselves, relies on a reconciliation with the dependence, vulnerability, and non-rational forms of exchange that a narrow attachment to autonomy and rationality seems directly to occlude. The correlative rejection thus signals both a practical and epistemological problem which results from how we view ourselves and how we subsequently relate to and try to know others, the harmful effects of which are both ethical and spiritual.

Access to health care in an age of austerity: disabled people’s unmet needs in Greece

ROTAROU, Elena S
SAKELLARIOU, Dikaios
2017

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Since late 2009, Greece has been dealing with the effects of a debt crisis. The neoliberal principles embedded in the three structural adjustment programmes that the country accepted have required radical cuts in health care funding, which in turn have led to widening inequalities in health. This article focuses on access to health care for people with disabilities in Greece in the context of these structural adjustments. We investigate possible differences in unmet health care needs between people with and without disabilities, using de-identified cross-sectional data from the European Health Interview Survey. The sample included 5400 community- dwelling men and women aged 15 years and over. The results of the logistic regressions showed that people with disabilities report higher unmet health care needs, with cost, transportation, and long waiting lists being significant barriers; experience of all barriers was positively associated with low socio- economic status. These findings suggest that a section of the population who may have higher health care needs face greater barriers in accessing services. Austerity policies impact on access to health care in both direct and indirect ways, producing long-term disadvantage for disabled people. Social policies and comprehensive anti-discrimination legislation might help to address some of the barriers this population faces.

Discriminatory validity of the Aspects of Wheelchair Mobility Test as demonstrated by a comparison of four wheelchair types designed for use in low-resource areas

RISPIN, Karen L.
HAMM, Elisa
WEE, Joy
2017

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Background: Comparative effectiveness research on wheelchairs available in low-resource areas is needed to enable effective use of limited funds. Mobility on commonly encountered rolling environments is a key aspect of function. High variation in capacity among wheelchair users can mask changes in mobility because of wheelchair design. A repeated measures protocol in which the participants use one type of wheelchair and then another minimises the impact of individual variation.


Objectives: The Aspects of Wheelchair Mobility Test (AWMT) was designed to be used in repeated measures studies in low-resource areas. It measures the impact of different wheelchair types on physical performance in commonly encountered rolling environments and provides an opportunity for qualitative and quantitative participant response. This study sought to confirm the ability of the AWMT to discern differences in mobility because of wheelchair design.


Method: Participants were wheelchair users at a boarding school for students with disabilities in a low-resource area. Each participant completed timed tests on measured tracks on rough and smooth surfaces, in tight spaces and over curbs. Four types of wheelchairs designed for use in low-resource areas were included.


Results: The protocol demonstrated the ability to discriminate changes in mobility of individuals because of wheelchair type.
Conclusion: Comparative effectiveness studies with this protocol can enable beneficial change. This is illustrated by design alterations by wheelchair manufacturers in response to results.
 

The grace of motherhood: disabled women contending with societal denial of intimacy, pregnancy, and motherhood in Ethiopia

TEFERA, Belaynesh
VAN ENGEN, Marloes
VAN DER KLINK, Jac
SCHIPPERS, Alice
2017

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This study aimed to provide better understanding of intimacy and marriage, pregnancy, birth, and motherhood experiences of women with disability in Ethiopia. Qualitative, in-depth, and semi-structured interviews along with personal observations were used to explore the full experiences of participants, as told in their own words. The result of the interviews indicated that relationships and motherhood proved a very rewarding option for women with disabilities. They also expressed their need for intimacy regardless of society’s denial. Challenges identified include negative societal attitudes toward women with disabilities regarding relationship, pregnancy, and child-rearing. Accessibility of health centers in addition to the ignorance and negative attitudes of the physicians are also reported to be major challenges for the interviewees. This study highlights how rewarding the experience of motherhood was for the interviewees and also shows that women with disabilities face challenges at every step of their experiences, because of society’s prejudices toward disability.

Disability and HIV

UNAIDS
August 2017

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This report highlights existing key evidence on the relationship between disability and HIV. It discusses the concrete steps needed for a person-centred, disability-inclusive HIV response that allows for increased participation of people with disabilities and integrates rehabilitation within the continuum of HIV care. Globally, it is estimated that 1 billion people (15% of the world’s population) have a disability. Of those aged over 15 years, approximately 110–190 million (2.2–3.8%) experience significant disabilities. Disability is increasing in prevalence due to ageing populations, trauma, accidents and the increase in chronic health conditions, including HIV. Persistent discrimination against and exclusion of people with disabilities, in particular women and girls with disabilities, increases their vulnerability, including their risk of HIV infection.
 

What do I think about inclusive education? It depends on who is asking. Experimental evidence for a social desirability bias in attitudes towards inclusion

LÜKE, Timo
GROSCHE, Michael
2017

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Recently, research has focused on attitudes towards inclusive education, and the majority of studies use questionnaires to measure this vital variable. In two consecutive experiments, we showed that attitudes towards inclusive education are not stable but instead are significantly influenced by social context. We manipulated information on the organisation conducting a survey regarding attitudes of participants towards inclusive education. The results show that the attitude of the organisation conducting the survey – as perceived by the participant – outperforms well- documented variables (e.g. sex, age, and contact to a person with disability) in predicting the attitudes of the participant towards inclusion. This one variable explains as much variance as all other predictors combined. We argue that social desirability is a neglected issue in research on attitudes towards inclusive education. Our findings challenge the validity of numerous studies on this topic because they show a positive bias in the attitudes of participants when they were surveyed by a university. Thus, we outline the first steps to reduce social desirability-induced validity problems in research on attitudes towards inclusion.

The right to live independently and be included in the community : Addressing barriers to independent living across the globe

ANGLELOVA-MLADENOVA, Lilia
June 2017

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This reports looks at the main barriers to the realisation of disabled people’s right to live independently and be included in the community, which is set out in Article 19 of the UN Convention on the Rights of Persons with Disabilities (CRPD). They are grouped in seven broad areas: (1) misunderstanding and misuse of key terms, (2) negative attitudes and stigma, (3) lack of support for families, (4) prevalence of institutional services, (5) barriers related to community support services, (6) barriers in mainstream services and facilities, and (7) barriers, concerning other CRPD provisions, with effect on Article 19. A set of recommendations is also provided, outlining measures required to address these barriers.

The recommendations in this report – presented below - were shared with the UN Committee on the Rights of Persons with Disabilities when they were drafting the General Comment on Article 19. They can be used by governments and civil society organisations, alongside the General Comment, to identify actions needed to implement Article 191 CRPD.

 

Towards a new directional turn? Directors with cognitive disabilities

SCHMIDT, Yvonne
2017

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Drawing from my first-hand observations and embodied experiences of having collaborated with HORA over the course of several years, this paper discusses an under-investigated area within the field of disability and performance: pioneering work by directors and with learning or cognitive disabilities, an area which has not yet been addressed in the expanding field of disability and performance studies.

South Sudan: People with disabilities, older people face danger

HUMAN RIGHTS WATCH
May 2017

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It is reported that people with disabilities and older people in South Sudan face greater risks of being caught in fighting and greater challenges in getting necessary humanitarian assistance. In February and March 2017, Human Rights Watch interviewed more than 45 people with disabilities and older people in displacement sites in Juba and Malakal, as well as in Panyijar county in the former Unity state, where the UN declared famine in two counties in February. Human Rights Watch also met with aid organizations and the South Sudan Human Rights Commission. The challenges faced by people with disabilities are reported.

Normality and disability: intersections among norms, law, and culture

GOGGIN, Gerald
STEELE, Linda
CADWALLADER, Jessica
April 2017

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The central aim of this anthology of papers is to consider the place of law in political, social, scientific and biomedical developments relating to disability and other categories of ‘abnormality’. The papers consider how categories of abnormality relate to the privileged and frequently unmarked position of ‘normality’ and how legal interventions in abnormality relate to existing normative designations in the dominant cultural imaginary. This collection of papers has a range of disciplinary approaches

Paper titles:

  • Fit or fitting in: deciding against normal when reproducing the future
  • Eccentricity: the case for undermining legal categories of disability and normalcy
  • Eugenics and the normal body: the role of visual images and intelligence testing in framing the treatment of people with disabilities in the early twentieth century
  • The construction of access: the eugenic precedent of the Americans with Disabilities Act
  • Disability and torture: exception, epistemology and ‘black sites’
  • Mental capacity and states of exception: revisiting disability law with Giorgio Agamben
  • Not just language: an analysis of discursive constructions of disability in sentencing remarks
  • Policing normalcy: sexual violence against women offenders with disability
  • ‘The government is the cause of the disease and we are stuck with the symptoms’: deinstitutionalisation, mental health advocacy and police shootings in 1990s Victoria
  • Disruptive, dangerous and disturbing: the ‘challenge’ of behaviour in the construction of normalcy and vulnerability
  • Making the abject: problem-solving courts, addiction, mental illness and impairment
  • Cripwashing: the abortion debates at the crossroads of gender and disability in the Spanish media
  • ‘Figurehead’ hate crime cases: developing a framework for understanding and exposing the ‘problem’ with ‘disability’

Continuum 

Journal of Media & Cultural Studies, Vol.31, No.3, pp. 337-340

http://dx.doi.org/10.1080/10304312.2017.1275077

Human rights: a reality for all - Council of Europe Disability Strategy 2017-2023 (2017)

THE COUNCIL OF EUROPE
March 2017

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The overall goal of the Council of Europe Disability Strategy (2017-2023) is to achieve equality, dignity and equal opportunities for persons with disabilities in specific areas where the Council of Europe can make an input. In order to ensure independence, freedom of choice, full and active participation in all areas of life and society, the strategy highlights work and activities required in five priority areas:

1. Equality and non-discrimination

2. Awareness raising

3. Accessibility

4. Equal recognition before the law

5. Freedom from exploitation, violence and abuse

The strategy also proposes action targeting five cross-cutting themes: participation, co-operation and co-ordination, universal design and reasonable accommodation, gender equality perspective, multiple discrimination and education and training. 

Human rights and disability: A manual for national human rights institutions

CROWTHER, Neil
QUINN, Gerard
REKAS, Abigail
March 2017

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(Updated Dec 2018)

This Manual is designed to provide practical guidance for national human rights institutions (NHRIs) that are actively working to advance the human rights of persons with disabilities, as well as those NHRIs that are seeking to strengthen their efforts in this area. This Manual provides practical guidance and recommendations about how the role and functions of NHRIs can be directed to provide better protection for persons with disabilities, to promote greater awareness and respect for their rights, and to monitor the progress made and obstacles encountered in advancing their rights.

There are three parts to the manual.

  • Part I: The concepts - the human rights framing of disability
  • Part II: The law - international human rights law and disability (CRPD and others)
  • Part III: The practice - what NHRIs can do to contribute to the process of change

 

 

Effectiveness of Role Play and Bibliotherapy in Attitude Change of Primary School Pupils towards Learners with Special Needs in Nigeria

NWACHUKWU, Kingsley Ezechinyere
2017

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Purpose: The research addressed two major problems, namely, the persistent negative attitude towards learners with special needs; and the effectiveness of role play and bibliotherapy in changing the attitude of primary school pupils towards their differently-abled fellow students.

 

Method: Two null hypotheses guided the conduct of the study. Albert  Bandura’s Theory of Social Learning (1977) provided the theoretical framework for the study and the Solomon four-group design was followed in practice. The study population consisted of all the Primary Six school pupils in the 502 primary schools in Owerri educational zone. From a total of 76,481 Primary Six pupils, a sample of 80 students from two schools was selected for the study. One instrument - Attitude Towards the Disabled Rating Scale (ATDRS) - and two programmes - Nwachukwu’s Role Play Exercise Programme (NRPEP) and Nwachukwu’s Bibliotherapy Programme (NBP) - were used for the successful implementation of the study, which was validated by experts. The hypotheses were tested using t-test for correlated and independent samples.

 

Results: The findings indicated that the pupils’ attitudes towards learners with special needs in Owerri educational zone improved significantly after they were exposed to the NRPEP and NBP respectively, indicating the effectiveness of the two programmes.

 

Conclusion: Education policy makers, the Ministry of Education and State Universal Basic Education Boards should recommend the use of inclusion books and encourage the practice of role play in schools for the success of inclusive education in Nigeria.

Mental health and human rights : Report of the United Nations High Commissioner for Human Rights

OFFICE OF THE HIGH COMMISIONER FOR HUMAN RIGHTS
January 2017

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"The present report, mandated by the Human Rights Council in resolution 32/18, identifies some of the major challenges faced by users of mental health services, persons with mental health conditions and persons with psychosocial disabilities. These include stigma and discrimination, violations of economic, social and other rights and the denial of autonomy and legal capacity.

In the report, the High Commissioner recommends a number of policy shifts, which would support the full realisation of the human rights of those populations, such as the systematic inclusion of human rights in policy and the recognition of the individual’s autonomy, agency and dignity. Such changes cover measures to improve the quality of mental health service delivery, to put an end to involuntary treatment and institutionalisation and to create a legal and policy environment that is conducive to the realisation of the human rights of persons with mental health conditions and psychosocial disabilities"

A/HRC/34/32

Human Rights Council, Thirty-fourth session, 27 February-24 March 2017

Toolkit for understanding and challenging leprosy related stigma for Civil Society Organisations in India

JOY, Anish
et al
2017

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This toolkit is intended primarily for use by CSO's at the community level in India for use with field workers and local governments for challenging stigma and discrimination against people affected by leprosy/disabilities. The toolkit uses simple activities and pictures and is based on a participatory approach which requires active involvement of the group being trained. There are 6 modules:

What is leprosy

What is stigma

How we stigmatise others

How it feels to be stigmatised

Understanding human rights

Action towards inclusion

There are 10 appendices providing supporting information for the toolkit  

Precarious lives and resistant possibilities: the labour of people with learning disabilities in times of austerity

BATES, Keith
GOODLEY, Dan
RUNSWICK-COLE, Katherine
2017

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This paper draws on feminist and queer philosophers? discussions of precarity and employment, too often absent from disability studies, to explore the working lives of people with learning disabilities in England in a time of austerity. Recent policy shifts from welfare to work welcome more disabled people into the job market. The reality is that disabled people remain under-represented in labour statistics and are conspicuously absent in cultures of work. We live in neoliberal- able times where we all find ourselves precarious. But, people with learning disabilities experience high levels of uncertainty in every aspect of their lives, including work, relationships and community living. Our research reveals an important analytical finding: that when people with learning disabilities are supported in imaginative and novel ways they are able to work effectively and cohesively participate in their local communities (even in a time of cuts to welfare). We conclude by acknowledging that we are witnessing a global politics of precarity and austerity. Our urgent task is to redress the unequal spread of precaritization across our society that risks leaving people with learning disabilities experiencing disproportionately perilous lives. One of our key recommendations is that it makes no economic sense (never mind moral sense) to pull funding from organisations that support people with intellectual disabilities to work.

Inequalities in access to health care for people with disabilities in Chile: the limits of universal health coverage

ROTAROU, Elena S
SAKELLARIOU, Dikaios
2017

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We analysed cross-sectional data collected as part of the National Socioeconomic Characterisation Survey (2013) in Chile, in order to explore if there are differences in access to health care between adult Chileans with and without disability. The study included 7459 Chilean adults with disability and 68,695 people without disability. Logistic regressions were performed in order to determine the adjusted odds ratios for the associated variables. We found that despite universal health coverage, Chileans with disabilities are more likely to report worse access to health care, even when controlling for socio-economic and demographic variables, including age, gender and income. Specifically, they are more likely to face greater difficulty arriving at a health facility, obtaining a doctor’s appointment, being attended to in a health facility, paying for treatment due to cost, and obtaining necessary medicine. Both people with and without disability are more likely to face difficulties in accessing health services if they are affiliated with the public health provider, an indication of the economic factors at play in accessing health care. This study shows that universal health coverage does not always lead to accessibility of health services and underlines the disadvantaged position of disabled people in Chile in accessing health services. While efforts have been made recently to improve equity in health care access, disability in Chile poses an additional burden on people’s access to health care, emphasising the necessity for policy to address this perpetual cycle of disadvantage for disabled people.

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