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“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.

Cross-sectional Survey to Assess Prevalence of Disability and Access to Services in Albay Province, The Philippines

HODGE, Marcus
BOLINAS, Amable
JAUCIAN, Erlynn
BONEO, Rebecca
SCHAPIRA, Allan
VILLANUEVA, Mary Mediatrix V
2017

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Aim:  A cluster randomized cross-sectional survey to assess the prevalence of disability and access to support services was conducted in Albay Province, the Philippines in April 2016.

 

Method:  The population-based survey methodologies developed by the Washington Group of the United Nations Statistical Commission and UNICEF were utilized.  A sample of 70 barangays (the 3rd level administrative division in the Philippines) was selected as clusters, with probability proportional to size, and 30 households were selected randomly in each barangay to be surveyed.

 

Results:  The estimated prevalence of disability using the standard criteria of the Washington Group and UNICEF among children (2-17 years old) was 2.0% and for adults (≥18 years old) it was 6.5%.  The estimated prevalence of disability was higher in rural than in urban areas.  Deficiencies in the performance of existing services were identified; access by children with disabilities to support services was lowest in rural highland and rural plain barangays.

 

Conclusions: There was a large unmet demand for support services addressing the needs of persons with disabilities in Albay Province, especially in rural highland areas.  Persons with disabilities were disadvantaged in access to education and employment; many had not been educated in their basic rights.

 

Implications:  To identify, educate and fully support persons with disabilities, community-based rehabilitation (CBR), health and other rehabilitation services must communicate effectively with each other, their current work should be mapped and analysed, their comparative strengths identified, and their future work coordinated.  It is a priority to educate persons with disabilities and their families about their rights, and facilitate their access to support services; this requires increased investment in communication targeting persons with disabilities and the communities, especially rural.  Providers caring for persons with disabilities need to work in partnership to identify unreached persons with disabilities.  Prevalence surveys, with stronger focus on the profiles and performance of CBR and related services, would add to the evidence-base to improve the quality and coverage of services for persons with disabilities.

Disability Inclusive Development Good Practices: Level of Commitment to Core Concepts of Human Rights

HENDERSON, Cheryl
MANNAN, Hasheem
POWER, Jessica
2017

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Aim: Good practices have been documented by International Non-Governmental Organisations (INGOs) to promote disability inclusive development and encourage the replication or scaling up of good practices that use rights based approaches. This study aimed to investigate the extent to which Core Concepts of human rights are illustrated in disability inclusive development good practices related to health.

 

Methods: This study analysed case studies of disability inclusive development good practices focusing on health that are available in the public domain using EquiFrame, an established content analysis framework in benchmarking health and social policies.

 

Results: A total of 42 health related good practices were identified from 3 different INGOs working in the field of disability inclusive development. The highest occurring human rights Core Concepts were; access 55%, individualised services 48%, capacity building 45% and participation 38%. The Core Concepts with the lowest levels of commitment were; autonomy 3%, cultural responsiveness 3%, accountability 3%, and efficiency 3%. Privacy and autonomy were not mentioned at all. The quality of reporting of the core concepts of human rights was low as they did not state specific programme actions or intentions to monitor Core Concepts.

 

Conclusion: Level of commitment to Core Concept coverage and quality of reporting was low. EquiFrame was successfully extended to analyse disability inclusive development good practices focusing on health. Its use in further analysis of inclusive good practice is advised.

 

Implications: These results can be used for advocacy in disability inclusive development and to guide programme staff training and documentation of disability inclusive development good practices.

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.

Forgotten, excluded or included? Students with disabilities: A case study at the University of Mauritius

PUDARUTH, Sameerchand
GUNPUTH, Rajendra P.
SINGH, Upasana G.
2017

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Background: Students with disabilities in the tertiary education sector are more than a just a phenomenon, they are a reality. In general, little attention is devoted to their needs despite the fact that they need more care and attention.


Objectives: This paper, through a case study at the University of Mauritius, sought to answer some pertinent questions regarding students with disabilities. Does the University of Mauritius have sufficient facilities to support these students? Are students aware of existing facilities? What additional structures need to be put in place so that students with any form of disability are neither victimised, nor their education undermined? Are there any local laws about students with disabilities in higher education?


Method: To answer these questions and others, an online questionnaire was sent to 500 students and the responses were then analysed and discussed. The response rate was 24.4% which showed that students were not reticent to participate in this study.


Results: Our survey revealed that most students were not aware of existing facilities and were often neglected in terms of supporting structures and resources. ICT facilities were found to be the best support that is provided at the University of Mauritius. The right legal framework for tertiary education was also missing.


Conclusion: Ideally, students with disabilities should have access to special facilities to facilitate their learning experiences at tertiary institutions. Awareness about existing facilities must also be raised in order to offer equal opportunities to them and to enable a seamless inclusion.

Teachers’ Perceptions of Disabilities on the Island of Roatán, Honduras

SCHNEIDER, Cornelia
2017

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Purpose: Roatán, a small island in Honduras, is home to six ethnic groups. Due to financial constraints, many children have limited access to schooling. This article is a study on teachers’ perceptions of disabilities and students with disabilities and inclusive education on the island.

 

Method: Twenty seven teachers working in public and private schools, and schools funded by the World Bank, were interviewed in March-April of 2014 in order to explore cultural and social representations of disabilities on the island.

 

Results: The findings show that many of the teachers’ representations can be analysed under the lens of different models of disability - the medical model, the social model, and a religious-moral model. Inclusive education is perceived less as a means of including children with disabilities in the regular classroom, and more as a method of creating institutions to take care of their needs.

 

Conclusion: There is a strong intersection of poverty, post-colonialism and disability which makes working under an inclusive lens very difficult for teachers. The cultural norms influence ideas of normalcy and disabilities, and the blame is on parents for having children with disabilities.

Access to Services and Barriers faced by People with Disabilities: A Quantitative Survey

GRILLS, Nathan
SINGH, Lawrence
PANT, Hira
VARGHESE, Jubin
MURTHY, GVS
HOQ, Monsurul
MARELLA, Manjula
2017

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Purpose: In low- and middle-income countries, reliable and disaggregated disability data on prevalence, participation and barriers is often not available. This study aimed to estimate disability prevalence, determine associated socio-demographic factors and compare access in the community between people with and without disability in Dehradun district of Uttarakhand, India, using the Rapid Assessment of Disability Survey.

 

Methods: A cross-sectional population-based survey was conducted on a sample of 2431 adults, selected using a two-stage cluster randomised sampling technique. The survey comprised an interviewer-administered household survey and an individual survey measuring disability, wellbeing and participation.  For each person with disability, an age and sex-matched control (without disability) was selected. In addition to prevalence, the difference in participation and barriers faced by people with and without disability were analysed.

 

Results and Conclusions: The prevalence of disability was 6.8% (95% CI 5.8-7.8) with significant associations with age, sex, economic status, education and employment. Psychosocial distress (4.8%) and mobility impairment (2.7%) were the most common disabilities identified. The study showed that people with disabilities had significantly less access to services than those without disability, and the barriers reported most often were lack of information, transport and physical inaccessibility.

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.

Public health, research and rights: the perspectives of deliberation panels with politically and socially active disabled people

BERGHS, Maria
ATKIN, Karl
GRAHAM, Hilary
HATTON, Chris
THOMAS, Carol
2017

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Public health research purports to provide the evidence base for policies, programmes and interventions to improve the health of a population. However, there is increasing awareness that the experiences of disabled people have played little part in informing this evidence base. This paper discusses one aspect of a study commissioned by England’s National Institute for Health Research (NIHR) to review the implications for public health of theories and models of disability. This part of the study focused on the development of a tool or decision aid to promote ethical inclusion of disabled people in public health randomised controlled trials (RCTs) and evaluative research. The tool was introduced at four regional ‘deliberating panels’ involving politically and socially active disabled people. In addition, we held a panel with public health professionals. The deliberation panels debated how the focus of public health was narrowing, why disability was excluded and positive and negative issues with using rights to guide research and evaluative practice. Politically active disabled people argued for a social model of human rights to guide any rights based tools or decision aids in public health and disability research.

Challenges faced by women with disabilities in accessing sexual and reproductive health in Zimbabwe: The case of Chitungwiza town

Tafadzwa RUGOHO,
France MAPHOSA
2017

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Background: Women with disabilities in Zimbabwe face numerous challenges in accessing sexual and reproductive health. Cultural belief still regards them as not sexually active. The government has also failed to promote policies that facilitate access to sexual and reproductive services by women with disabilities.


Objectives: The reseach objectives were to explore the challenges faced by women with disabilities in accessing sexual and reproductive health in Zimbabwe.


Method: The data were gathered using in-depth interviews with 23 purposively selected respondents. Thirteen women had physical disabilities, five were visually impaired, three were deaf and two were stammering. The respondents with physical disabilities were using wheelchairs, walking frames, prosthesis, crutches and caliper shoes. The participants’ ages ranged from 18 to 45 years. All interviews were transcribed and translated verbatim into English, and passages were extracted from the transcripts. Key themes and concepts were identified and coded to offer a rich framework for analysis, comparisons and presentation of the data.


Results: Negative perceptions of health personnel towards people with disabilities, disability-unfriendly infrastructure at health facilities and absence of trained personnel for people with disabilities (sign language) are some of the challenges involved.
Conclusion: The government, in partnership with other stakeholders, should address challenges faced by women with disabilities when accessing sexual and reproductive health services. Non-government, private hospitals and profit-making organisations should join hands with government in funding health requirements for women with disabilities.

Communication Disability in Fiji: Community Cultural Beliefs and Attitudes

HOPF, Suzanne C
MCLEOD, Sharynne
MCDONAGH, Sarah H
RAKANACE, Epenisa N
2017

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Purpose: Beliefs about communication disability vary according to the cultural context, and influence people’s attitudes and help-seeking behaviour. Little is known about Fijians with communication disability or the communities in which they live, and specialist services for people with communication disability are yet to be established in Fiji. An understanding of Fijian beliefs about the causes of communication disability and attitudes towards people with communication disability may inform future service development.

 

Method: An interpretivist qualitative research paradigm and the International Classification of Functioning, Disability and Health (ICF) framework informed this project’s design. Scenarios of adults and children with communication disability were presented to 144 participants, randomly sampled across multiple public spaces in two Fiji cities. Thematic analysis of responses to 15 survey questions revealed participant beliefs about the causes and attitudes towards people with communication disability.

 

Results: Three clusters describing perceived causes emerged from the analysis - internal, external, and supernatural. Major clusters across child and adult scenarios were similar; however, response categories within the scenarios differed. Community attitudes to people with communication disability were predominantly negative. These community attitudes influenced individual participants’ beliefs about educational and employment opportunities for Fijians with communication disability.

 

Conclusion: Determination and acknowledgement of individuals’ belief systems informs development of culturally appropriate intervention programmes and health promotion activities.

 

Implications: Speech-language pathologists and other professionals working with Fijian communities should acknowledge community belief systems and develop culturally-specific health promotion activities, assessments, and interventions.

Th e Search for Successful Inclusion

KARLSUDD, Peter Ingemar
2017

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Purpose: This study primarily aimed to find the factors which can facilitate or, alternatively, hinder inclusion efforts.

 

Method: Results from a number of student theses, which dealt with common issues in the area of inclusion of pupils with special needs, were brought together systematically. The method has been called area-delimited meta-study, where increased validity and generalisability are expected to strengthen development at the schools where the thesis work is carried out. A total of 18 thesis projects with a representation of 24 classrooms were included. The results of these projects have been categorised with the help of two models, positive and negative labelling, as well as inner and outer inclusion capital.

 

Results: The respondents in the various studies were quite positive towards inclusion. The teachers stated that inclusion offers a range of possibilities even if problems often occur during implementation. For efforts to succeed, personnel should internalise the values intrinsic to inclusion. Staff knowledge, perception and empathy are examples of the inner inclusion capital necessary to achieve the goal of inclusion. Courage, self-confidence and self-awareness are additional factors that are essential for success. Outer inclusion capital such as clear leadership and effective teamwork are conditions that promote inclusion.

 

Conclusion: Based on the results, it would be logical to invest in the positive labelling factors that are identified and at the same time work towards minimising the negative factors. The work can be further developed with area-delimited meta-studies, and future thesis projects could be initiated with a structure that is more participatory and action-oriented.

 

Limitations: One problem in evaluating the circumstances around inclusion is that the respondents' interpretation of the definition of the word inclusion may vary. Even the experience of how inclusion works can differ between the teachers involved in the study. Despite these difficulties, the overall results provide a robust picture of the problems and opportunities that fit within the area. Differences in teacher interpretation could also be an important element for the research.

A world without Down’s syndrome? Online resistance on Twitter: #worldwithoutdowns and #justaboutcoping

BURCH, Leah
2017

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Presented by actress and comedian Sally Phillips, A World Without Down’s Syndrome has brought important ethical debates regarding prenatal screening into the public domain. By talking to people with Down’s syndrome, family members, and professionals, Sally has presented a nuanced and thorough examination of the type of world we are living in. Following the documentary, Twitter users have continued to engage with debates and have created a resilient platform for challenging public attitudes. This paper explores the ways in which Twitter hashtags have provided a space for such important and long overdue conversations. While it would not be possible to provide a full overview of the topical conversations that the two hashtags have provoked, I aim to focus on some of the most prominent topics. The following, then, will explore the potential of alternative narratives that resist, and disrupt, normative notions of the human using the hashtags #worldwithoutdowns and #justaboutcoping.

Exploration of the academic lives of students with disabilities at South African universities: Lecturers’ perspectives

MUTANGA, Oliver
WALKER, Melanie
2017

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Background: A decade has passed since South Africa signed and ratified the Convention on the Rights of Persons with Disabilities, a human rights treaty that protects the rights and dignity of people with disabilities. However, not much have changed for students with disabilities.


Objectives: The aim of this study was to explore lecturers’ experiences with, and perspectives on, disability as well as with students with disabilities. It was hoped that this would contribute to the ongoing policy debates about diversity, inclusion and support for students with disabilities at universities.


Methods: In an effort to understand the lives of students with disabilities better, a study which included students with disabilities, lecturers and disability supporting staff was conducted at two South African universities – University of the Free State and University of Venda. The paper takes a snapshot view of four lecturers and their perceptions of the lives of students with disabilities at their respective universities.


Results and Conclusion: Although most disability literature report students with disabilities blaming lecturers for their failure to advance their needs, this paper highlights that the education system needs to be supportive to lecturers for the inclusive agenda to be realised. An argument is made for a more comprehensive approach towards a national disability policy in higher education involving many stakeholders. Without a broader understanding of disability, it will be difficult to engage with the complex ways in which inequalities emerge and are sustained.

Advocacy Campaign for the Rights of People with Disabilities: A Participatory Action Research within a Community-based Rehabilitation Project in Vangani, Maharashtra

JAISWAL, Atul
GUPTA, Shikha
2017

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Purpose: This paper aimed to demonstrate how participatory action research (PAR) within a Community-based Rehabilitation (CBR) project facilitated community participation to advocate for the rights of people with visual impairment. An advocacy campaign, led by the local people with and without disabilities, was launched for the construction of an accessible foot over- bridge (FOB) at Vangani railway station in Maharashtra, India.

 

Methods: The PAR approach was used to explore the issues faced by the local people with visual impairment. It ensured maximum community consultation, engagement and, consequently, meaningful outcomes for the community. Advocacy tools such as video documentary, online petition, media advocacy, and signature campaign were employed to publicise the issue on a larger platform. Sources for this paper included quantitative data from the survey of Vangani community and documents such as CBR project reports, media coverage articles, minutes of the meeting and correspondence with the Central Railways during the advocacy campaign that was conducted from 2012 -  2015.

 

Results: After 12 months of consistent advocacy, the Ministry of Railways sanctioned INR 15 million for the construction of the foot over-bridge. The construction work on the foot overbridge was completed in December 2016 and now it is open for public use..

 

Conclusion and Implications: This study illustrates how PAR within a CBR project successfully used an advocacy campaign as a tool for community participation, action and change. Although geographically limited to rural pockets of Maharashtra state, the learning experiences brought out some of the elements crucial for the success of an advocacy intervention within CBR programmes for the rights of people with disability in India.

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.

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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