1: Disabilities: Embodied Inequalities

This is a collaboration panel between NGOs and academia pertaining to disabilities as embodied forms of inequalities. In the Universal Declaration of Human Rights in 1948 persons with disabilities remained unmentioned, except for Article 25, under which ‘Everyone has […] the right to security in the event of […] disability […].’ The words such as ‘all human beings’ and ‘everyone’ could be interpreted to include persons with disabilities as ‘other status’ but no other explicit mention of disability was made. It is only a recent history when disability has entered into the mainstream human rights and development thinking among others through the United Nations Convention on the Rights of Persons with Disabilities (2006). Similarly, the Millennium Development Goals did not mention disability, and persons with disabilities were largely left behind even when some of the goals were achieved well in time. Learning from the made mistakes, the Sustainable Development Goals have seven targets which explicitly refer to persons with disabilities and six targets refer to persons in vulnerable situations. Accordingly, many indicators were set to measure achievements of the targets and goals also for persons with disabilities. Today, disabilities have been increasingly mentioned in international and national laws and policies. Yet, their universal implementation continues to be a problem for this particular group. This panel focuses on disabilities as a cutting point to analyse inequalities and some of the social, institutional, historical, economic and/or political mechanisms behind them. Panelists consist of NGO representatives and academic researchers who will present their illustrating examples and connect empirical data and experiences with theoretical arguments to conceptualise inequalities from the perspective of persons with disabilities.

Co-chaired by Abilis Foundation and Hisayo Katsui (University of Helsinki), hisayo.katsui@helsinki.fi


Session 1, Room 404

Virpi Mesiäislehto (University of Jyväskylä), Magdaleena Lehmuskoski (Tampere University) and Hisayo Katsui (University of Helsinki)

Hurting Together: Pain-centric approach to disability in the context of gendered and disabling menstrual pain

Despite its well-intentioned focus on the disabling effects of the society, the social model of disability fails to engage on the ‘disabling effects of our bodies’ (Kafer, 2013, p.7) and to consider the issue of pain. Pain is an embodied experience and accommodation cannot alleviate individual suffering. Notwithstanding its severity and frequency, menstrual pain has been socially invisibilized through negative messages of menstruating bodies. Due to negativity, neglect and lack of opportunities to express subjective experiences of menstruation, not much is known about menstrual lives and in particular those of persons with disabilities in the Global South. However, there is an increasing interest towards the understanding of multifaceted menstrual experiences and pain as a central contributing factor. This paper explores the lived realities of menstrual pain and contests the individual and social models of disability through a pain-centric approach to disability. Menstrual negativity, denial of pain and the containment narrative are utilized as social constructions to conceptualize gendered and embodied pain. Using this theoretical stance, the paper
examines how individual and social locations of pain are perceived within the context of menstruation. Menstrual narratives of 63 Tanzanian girls with disabilities are
analysed with a special focus on perceptions of menstrual pain. The data, analysed using thematic analysis, illustrate that menstrual pain can be disabling and lead to discrimination. Pain perceptions are bio-psychologically diverse between participants, and within and between individual menstrual cycles. In addition, it reveals that the existing social locations of menstrual pain are insufficient in explaining pain experiences. The paper suggests a more diverse comprehension of menstrual pain that would enable interconnectedness across identities of menstruators and attach significance to embodied experience. Finally, it implies that the pain-centric approach may incentivize narrowing the divide between the individual and social models of disability towards more nuanced disability studies.

Mariam Ally Tambwe (College of Business Education, Tanzania), Margareth Amon Mapunda (College of Business Education, Tanzania) and Mzomwe Yahya Mazana (College of Business Education, Tanzania)

Inequality in the Teaching Profession: Evidence from Higher Education Institutions in Tanzania

Over the past fifty years there has been a growing attention to ensure gender equality in education. Various global commitments to gender equality across all levels of education has been agreed. Despite these efforts, patriarchy is still strongly felt and experienced by the unequal representation of women in the teaching profession. This paper aims at examining the inequality in the teaching profession in Higher Education Institutions (HEIs) in Tanzania. The study specifically: examines the status of women representation in the teaching profession in the HEIs; scrutinizes the determinants of unequal women representation in teaching profession in the HEIs; and identifies the challenges associated with unequal women representation in HEIs. The study applies a mixed method approach utilizing a semi structured questionnaire. Data were collected from four purposively selected HEIs in Dar Es Salaam, where, respondents were randomly selected based on the list provided by the human resource officers of the respective institutions. The collected data are analysed using descriptive statistics and thematic analysis techniques. The findings revealed that there were few women compared to men in the teaching profession. Also, social factors, poor academic performance, few women graduates, multiple roles, and lack of interest were the main factors leading to unequal representation in teaching profession in HEIs. The findings also shows that, multiple roles, cultural barriers, and gender stereotype were the main challenges hindering women inclusion in teaching profession in HEIs. Finally, the study suggests that, encouragement and cultural transformation should be taken into account in order to improve the inequality in the teaching profession. This study provides insights on how to transform HEIs to achieve genuine gender equality which will help policy makers to come up with actual strategies to improve the unequal representation in HEIs in Tanzania.

Suvi Kallio (Abilis Foundation)

Improving the livelihoods of persons with disabilities through income generating activities: Towards more effective and sustainable development projects in Sierra Leone

Abilis Foundation supports organisations of persons with disabilities in developing countries, and income generation and poverty reduction projects are one of Abilis’ key thematic areas. In 2019, Abilis commissioned a study to evaluate the effectiveness and sustainability of the funded income generation projects in Sierra Leone, and to identify the factors influencing the livelihoods of persons with disabilities. The findings of this study are consistent with the results of other recent Abilis evaluations and studies conducted in Nepal (2019), Kyrgyzstan (2018), and Vietnam, Cambodia and Ethiopia (2016). Widespread poverty affects all aspects of life in Sierra Leone, and persons with disabilities are even more vulnerable because they are often socially marginalised and face widespread discrimination that restricts their access to assets and participation in economic activities, decision-making, and social life in general. Most businesses supported in the sample projects continued to be very small-scale, yet one project had resulted in quite profitable self-employed activities. The results indicate that limited financial assets and strong competition restrain persons with disabilities from expanding their businesses. Social networks and education support their livelihood opportunities but are only useful when other factors enable people to draw on their social and human assets as well. It is essential to consider local characteristics, target beneficiaries, and market dynamics when planning and implementing poverty reduction programmes and livelihood activities. Persons with disabilities need more flexible opportunities to adopt diverse livelihood strategies. Improved access to diverse assets will also enable persons with disabilities to better cope with seasonal changes and adverse shocks. Other key elements include empowerment of persons with disabilities to have their voices heard and to gain control in their own lives, and promoting security and appropriate coping mechanisms to reduce vulnerability and to increase resilience.

Laura Poussa (Finnish Association of People with Physical Disabilities)

Improving the livelihoods and labour market situation of persons with disabilities in rural Zambia and Addis Abeba, Ethiopia

As part of the development cooperation work of Finnish Association of People with Physical Disabilities, we have supported rural groups of persons with disabilities to start small scale livelihoods projects aiming at combatting poverty and enhancing wellbeing of persons with disabilities in poor rural areas of Zambia. Zambians with disabilities have started vegetable farming, bee keeping, poultry & piggery, tailoring initiatives etc. In addition, together with these small projects disability awareness have been raised in the communities. Through the livelihood interventions and awareness raising actions pwds have become more visible and more respected as equal members in their communities in rural Zambia. A very successful recent initiative that is also supported by FPD in cooperation with our Zambian partner DPO, Zambia Association of Persons with Physical Disabilities, is the revolving goat bank scheme where persons with disabilities and their family members are donated goats and training in goat keeping. When goats give off-springs pwds are requested to give a fixed number of goats to other pwds in need. With the income through these goats pwds have been able to send their children to school, buy even assistive devices etc. Some successful groups have started to reinvest their money and continued to other businesses. One group of disabled women was able to invest for a grinding mill in Petauke Zambia. Experiences show however that support given to a family of pwds and/or a well organized group with disabilities (like women’s groups) succeed better than support given to a more loose group of pwds since disputes in groups are common. The goat scheme has been so far the best tool to combat wide-spread poverty in rural areas of Zambia and can reach an increasing number of people with disabilities together with their family members. In Ethiopia FPD has enabled through a Project called PIEE (Programme of Independence and Economic Empowerment of pwds) together with its local Ethiopian partner DDI (Disability Development Initiative) small scale vocational education and creation of small businesses for unemployed persons with physical disabilities in city of Addis Abeba (2013-2019). Pwds formed small business groups and they were given small scale vocational training, business guidance & mentoring. The groups consist of ca 10-20 people with disabilities and the businesses are electronics & repair of mobile phones etc, leather goods, poultry & injera baking. The groups were given also small micro loans to be able to start the business. City of Addis Abeba collaborated. Today it seems that round 75 % of the groups started continue their businesses and have become sustainable. However they are not able to pay back totally their original loans due to the poverty the participating group members experience. The impact expectation of the PIEE project is however met, i.e. improving the labour market situation of people with physical disabilities in Ethiopia. Also the group members show more self-confidence and wellbeing, have more social contacts and are more independent economically compared to their earlier life situation. The inaccessible built environment for pwds in the local business sites given by the city of Addis was a challenge for the participants. However these barriers were at least partly renovated accessible during the life time of the project. However the almost totally inaccessible physical environment and the poor availability of adequate mobility aids and maintenance services are challenges that persons with physical disabilities face in Addis from day to day. Today FPD have started to support accessibility knowhow and trained local people including local architect students for accessibility promotion and auditing in Ethiopia.

Session 2, Room 309

Loren Persi Vicentic (University of Belgrade) and Suela Lala (Together Foundation/Fondacioni ‘Se Bashku’, Albania)

Practices of destruction and policies of accessibility: preparedness for protection of persons with disabilities in a nuclear detonation as a determinant for engendered inequality

A series of conferences on the humanitarian consequences of nuclear weapons resulting in the first ban treaty gleaned the lack of suitable planning response to nuclear weapon use. Warnings of impending catastrophe have been widely publicized and also raised due to a nuclear attack text message broadcast in Hawaii. Regarded as long overlooked by academic, humanitarian and development communities, the specific needs for protections of persons with disabilities in war, disasters and humanitarian emergencies has been recently included in international human rightslaw through Article 11 of the Convention on the Rights of Persons with Diabetes and a charter of the World Humanitarian Summit, and, most recently, a resolution of the United Nations Security Council in 2019. Unpreparedness for protecting persons with disabilities denies an equal opportunity for survival. Does the inevitable result that many others will perish or become persons with disabilities due to the weapons’ effects create a bias? Non-action may be construed as perpetuating the lessening of the value of life of the disabled, reflecting false science and extreme abuses. What could be interpreted as silent determinants for who can be saved from catastrophe and in which situations the right to protection is going to be neglected? Through research primarily on the treatment of persons with physical disabilities in massive catastrophes, tracing the (non)responses during the Fukushima Daiichi nuclear disaster in Japan, and New Orleans during Hurricane Katrina in the US, this paper raises the issue of what being not prepared for the most extreme catastrophes implies in practice.

Niko Humalisto (FELM)

Disability-inclusive approach to climate change – challenges and opportunities

In 2019, UNHRC expressed a concern about the adverse impacts of climate change on individuals with multiple vulnerability factors. UNHRC emphasized the need for States to take and to support adequate measures to address specific needs of individuals with multiple vulnerability factors and to ensure their participation in disaster response planning and emergency response services. Disasters seriously affect the access of persons with disabilities (PwD) to food and nutrition, safe drinking water and sanitation, health-care services, education, adequate housing and access to decent work. UNHRC recognized the need for ensuring meaningful inclusion of PwDs and their organizations within disaster risk management (DRR) and climate-related decision-making at all decision-making levels. Also, the Paris convention emphasizes that all countries should respect their obligations on human rights, including the rights of PwDs. Due to the lack of access to climate change related debates, PwDs do not necessarily have access to adequate information, resources or services to tackle with climate change related problems and often they have limited opportunities to participate in design and implementation of climate change adaptation policy frameworks. Felm, implementing more than 1 million euro disability program annually, is addressing this issue by combining community-based climate work with disability-inclusive methods. Disability inclusion is mainstreamed in Felm’s development cooperation program and emergency responses. Through its training package “Building Resilience to Climate Change and Disaster” Felm pursues to increase the understanding of climate change and bring these issues under discussion also to the most vulnerable communities. There is a global demand to develop best practices for better inclusion of PWDs in emergency situations, adaptation and DRR activities. Felm aims to contribute to the overall global goal that no one is left behind, especially when the discussion concerns the future of the globe and people’s well-being.

Mikaela Heikkilä (Åbo Akademi University), Hisayo Katsui (University of Helsinki) and Maija Mustaniemi-Laakso (Åbo Akademi University)

Disability and vulnerability: A human rights reading of the response state

Universal human rights of all are complemented with particular, targeted protection of some, especially those that traditionally have been left behind. By juxtaposing the ideas of universality and particularity, the article studies vulnerability as a particularising tool within human rights with a comparative approach to the influential vulnerability theory by Martha Fineman. By outlining the similarities and the differences between the two approaches of vulnerability theory and human rights project, the article sheds light on how the particular protection needs of persons with disabilities play out in the universalistic logic of vulnerability. The article argues that both universal and particular obligations of responsive states – and responsive humans – are needed as a way of materialising substantive equality for persons with disabilities as vulnerable legal subjects. Such obligations cannot be codified in full detail, but the intrinsic essence of rights requires each right to be interpreted in context and with regard to the particular individual vulnerabilities and resilience of each person. In operationalising the obligations arising from such rights, the human rights project and the vulnerability theory complement and reinforce each other in terms of specifying the rationale and the detailed benchmarks for state action.Published in: Heikkilä, M., Katsui, H., & Mustaniemi-Laakso, M. (2020). Disability and vulnerability: a human rights reading of the responsive state. The International Journal of Human Rights. DOI: 10.1080/13642987.2020.1715948