Are We Moving Forward? Regional Study on the Rights of Women with Disabilities in the Middle East
Marcia Rioux, Professor, School Health Policy & Management Director – York University and Paula Campos Pinto, ISCSP University of Lisbon
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Women with disabilities continue to face discrimination on a daily basis all over the world. In the Middle East and North Africa region poor rule of law and governance, traditional and cultural practices and prejudice, poverty are all factors impeding the successful fulfilment of the human rights of the most vulnerable section of society.
The signing and ratification of the 2006 Convention on the Rights of Persons with Disabilities (CRPD) by many countries from the MENA region is a great prospect for advocacy, for bridging the inequality gap and making effective change that affects the lives of these girls and women. However, the way forward is to implement nationally the human rights principles of this convention and other human rights treaties such as the 1979 Convention to Eliminate All Forms of Discrimination Against Women(CEDAW ) and to challenge change in society through a bottom-down approach, engaging women with disabilties and empowering them to lead the social and institutional changes they require to be free and equal citizens in their countries.
Stars of Hope Society (SHS) was founded in Palestine as an effort to address these issues and to support Palestinian women with disabilitiesin realising their rights. Since its foundation in 2006, SHS has been eager to increase awareness about women with disability, their status, reality and needs as an endeavour to promote equality in education, employment and all walks of life. Furthermore, SHS has been successful at increasing the awareness of women with disabilities on their rights, as well as building their capacities and developing their professional skills to increase their chances on reaching out for equal job opportunities.
Increasingly Stars of Hope has engaged at a regional level and is now part of a regional movement struggling together towards this common goal in highly volatile and uncertain times for a region which is witnessing a so-called ‘Arab Spring’. This presents great opportunities for civil engagement and great challenges due to political instability, internal conflict and warfare.
As a step in Stars of Hope Society’s continuous effort to strengthen the women›s disability movement in the Arab world, SHS targeted women with disability in Palestine, Jordan,Egypt, Lebanon and Yemen at local and national levels to empower them and engaged them in advocacy for the implementation of the UN CRPD and CEDAW.
This project constitutes the fourth phase from the project “A Step Forward”,
aimed at ensuring that WWDs in the target countries have adequate knowledge and resources and are therefore engaged in the process. Stars of Hope provided support to national teams of WWDs through technical assistance to ensure active engagement in monitoring and reporting effort by training, consultancy, online support and small grants.
This study has sought to fill the gap existing in data and studies on women with disabilities in the region. It sought to collect analytical data, reviews and factual records to assess marginalization and discrimination against women with disabilities in terms of policy and laws. Through this plan, women with disabilities were fully engaged with local authorities and members of parliament, the media and other outlets to disseminate their message widely, which is their right to be involved in national movements. Moreover, national and lo- cal laws will be reviewed against the UNCRPD, therefore gender and disability will be the key factor of analysis.
It is hoped that this study will be useful for the advancement of the rights of women with disabilities and serve as a tool for regional and national governmental institutions and members of parliaments of Jordan, Egypt, Palestine, Yemen and Sudan. It is also expected to be useful for advocacy and future project planning for Donors, NGOs and UN agencies, media and public outlets, Human Rights, Women and Youth organizations and finally for Stars of Hope itself.
Director of Stars of Hope
Stars of Hope would like to thank all actors that have made this study process possible.
First of all SHS would like to thank Open Society Institute for the support both technical and financial that has allowed us to carry out this ambitious project.
We would to thank DRPI team mainly Marcia Rioux & Paula Pinto, who partic- ipated in the trainings and carried out the analysis for this report, as well as all the Stars of Hope team for its constant support and presence on and offline.
In particular, the women with disabilities’ teams collected information for the country reports in Jordan, Palestine, Egypt, Yemen, Sudan and Lebanon. A special thanks to the Palestinian refugee women engaging in the focus groups in the Palestinian Refugee Camps in Lebanon who shared their personal ex- periences with our team.
We are also grateful to the key informants who participated in collecting the individual country reports, including the authorities and the partners from lo- cal organisations – mainly local women and Disabled People’s Organisations (DPOs) – who welcomed the team of researchers in the various countries and were keen to engage in fruitful discussions and t engage in the net wok of civil society actors for the advancement of the rights of women with disabilities.
Director of the Boeard
Stars of Hope Society – Palestine
An accessible environment allows for free and safe movement, function and access for all, regardless of age, sex or condition. It is a space or a set of ser- vices that can be availed by all, without obstacles, with dignity and as much autonomy as possible.
Accessibility can be defined at three levels:
- Accessibility of the built environment, which includes housing and private buildings, as well as public spaces and structures.
- Geographic accessibility, which refers to the ability to circulate. Everybody should have the opportunity to choose their means of transport, to go from one place to another according to their needs, abilities and budget. This dimension is usually included within the previous one, as in CRPD Article 9, but various field experiences have shown that in many cases, free move- ment has to be addressed per se in addition to the settings and buildings.
- Access to information and communication which means, accessible me- dia, easy information dissemination and data that are within reach.
Community Based Rehabilitation (CBR):
CBR is a strategy within general community development for the rehabili- tation, equalization of opportunities and social inclusion of all persons with disabilities. It is implemented through the combined efforts of persons with disabilities, their families, organizations and communities, and relevant gov- ernment and non-government health, education, vocational, social and other service providers.2
Disability is an evolving concept and results from the interaction between per- sons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others.3
- Note #1
- From: Stars of Hope (2011) A step forward to the social inclusion of girls and women with disabilities in the Middle East Multifaceted challenges and combined responses, pp. 6-9.
- Note #2
- ILO, UNESCO, WHO, CBR: A Strategy for Rehabilitation, Equalization of Opportunities, Poverty Reduc- tion and Social Inclusion of People with Disabilities: Joint Position Paper, Switzerland, 2004
- Note #3
- United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), 2006
Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments, which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.4
Mental health disability – is a term that describes persons with disabilities due to mental disorders or illnesses. Examples include: schizophrenia, paranoia, major depressions, bipolar disorders, substance and drug abuse disorders or Alzheimer’s disease.
Intellectual disability, sometimes still wrongly referred to as ‘mental retarda- tion’ – is a disability characterized by significant limitations both in cerebral or logical functions such as reasoning, learning, problem solving and in adaptive behaviour, which covers many everyday social and practical skills. This dis- ability commonly originates before the age of eighteen.5
However, the paper will discuss the different meaning of the term disability according to national legislation of each of the studies countries.
Perceptions of disability: a shift of paradigm6
Over the ages, society’s perception of disability has dramatically changed. This evolution may be represented with the 6 following steps:
1. Disabled people as supra or infra-human:
Everything that cannot be explained in its context is a manifestation of the gods, and a source of beliefs. In this environment, society’s responses on dis- ability are unquestioned practices and duties. Examples: Deformed new-born babies abandoned to die in the wild, as a sacrifice to gods; mental illnesses seen as abilities to communicate with the gods; hunchback attract good luck; persons with mental health disorders considered as innocent, etc.
Persons with disabilities are a burden to society, they live mainly on charity and have a lower social status; they have to be protected. Society’s response: charity work, basic medical treatment with no questioning on their social posi- tion. Examples: persons with disabilities considered as paupers, their suffer- ing makes them «pure». They are fed and clothed in charity hospitals.
2. A precarious step towards equality:
A theoretical equality has been progressively introduced and universally put in place:
- Note #4
- United Nations Convention on the Rights of Persons with Disabilities, Article 1
- Note #6
- Dixon Catherine, “Perceptions of disability”, Handicap International, 2007
The basis of modern western human rights philosophy lies on the assumption that all human beings are equal
This principle is not universal and persons with disabilities are not always or sometimes reluctantly recognised as human beings
Example: questions arise about the condition of persons with intellectual dis- ability or mental health disorders.
3. Scientific classification and curiosity:
Physically different persons are designated as « freaks » and are sometimes displayed to the public. A classification is established, based on the descrip- tion of ‘characteristics’ or symptoms. Society’s response is exposure and med- ical care. On the economical side, industrialisation and productivism leave no place for persons with disabilities.
4. Repair the “broken”:The beginning of medical rehabilitation:
After World War II, the State was seen as accountable for the situation of mu- tilated or injured war veterans. Persons with physical disabilities were seen as defective, ‘broken’; they therefore have to be repaired, ‘restored to normality’. Example: State provision of prosthetics, wheelchairs; Special treatment for injured veterans, who are viewed as national ‘heroes’.
5. Disability as a social issue:
The disability movement emerges and brings along the concept of social in- clusion: Persons with disabilities are part of the social body and attention is paid to enabling their full inclusion in society (health, education, training, em- ployment sectors); Accessibility is a public issue; Disabled People’s Organisa- tions gain strength and visibility.
In the same time the Health/social sector experts define needs and services: Persons with disabilities have access services but in a « separate » system; Institutions provide basic services, shelter, « protection »; the responsibility of society lies on few specialists.
6. Disability: a human rights approach
The latest development of the perception of disability with: The whole com- munity has a duty to enable disabled people to fully participate in society; Persons with disabilities and their representatives claim their rights and fight to have them implemented.
Disabled People’s Organisations (DPOs) / Organisations of persons with disabilities:
A DPO is an organisation representing people with disabilities, focused on the promotion of their rights. In the majority of cases these organisations have to be mainly composed of and led by people with disabilities.
The empowerment of a group or community increases its strengths and im- proves its capacity to accomplish its goals. According to a World Bank defini- tion, “empowermentis the expansion to participate in, negotiate with, influ- ence, control, and holdaccountable institutions that affect their lives”.
Gender is a concept that refers to differences that are non-biological, such as psychological, mental, social-economic, demographic and political char- acteristics, whilst the term “sex” is used to refer to physical differences (often linked to reproduction) between men and women. Gender is defined as a social identity produced by the process of “socialisation” perpetuated by the environment in which people live. Gender describes the social roles and male- female relations within society; it defines men and women’s status within the family, community and nation; it is linked to the way in which power is used and shared; it designates the behaviour and actions attributed to and expect- ed from men and women7.
Gender Mainstreaming is the “process of assessing the implications for women and men of any planned action, including legislation, policies or pro- grammes, in all areas and at all levels. It is a strategy for making women’s as well as men’s concerns and experiences an integral part dimension of the design and implementation, monitoring and evaluation of policies and pro- grammes in all political, economic and societal spheres so that women can benefit equally and inequality is not perpetuated.”8 Gender mainstreaming is the main approach adopted by the Platform for Action of the Fourth World Conference on Women in Beijing in 1995, aiming to achieve gender equality. Mainstreaming measures may therefore be aimed at women only, men only, or at both genders. It is important to note that deciding to mainstream gender into programmes does not mean simply adding a “gender” component to de- velopment projects, but trying to incorporate this perspective into the way the
- Note #7
- Handicap International (HI), Guide to Gender and Disability, Lyon, 2009
- Note #8
- United Nations Economic and Social Council resolution, July 1997
project is designed and implemented.9
Impairment refers to the degree of anatomical, histological or physiological anomaly or alteration of an organic system.
Inclusive development is a rights-based change process that promotes equal- ity among and the participation of the largest possible section of society, espe- cially groups that face discrimination and exclusion. It ensures that persons with disabilities are recognized as rights-holding equal members of society, entitled to contribute to the development process. Inclusive development can be implemented at both the national and local levels.10
It is “ the process by which the State and the community ensure that persons with disabilities can fully participate and be supported to do so within any type of structure and service intended for the general public, such as education, health, employment and social services…”11 Effective mainstreaming of dis- ability issues into legislation, policies and services requires the inclusion and participation of persons with disabilities in decision-making processes in all its aspects, at all levels of government, and at every stage, including planning for, implementation and evaluation of the effectiveness of these policies.12 In the preamble, the Convention on the Rights of Persons with Disabilities empha- sizes “the importance of mainstreaming disability issues as an integral part of relevant strategies of sustainable development”.
There is no specific definition to the Rights Based Approach but it can be understood with its main characteristics:
- A permanent reference to rights (Definition of objectives in terms of rights that are legally enforceable through international legal instruments; rights are indivisible and interdependent: civil, political, economic, social and cultural rights; Concern all fields: health, education, accommodation, justice, security, political participation…; Impossible to choose between development and human rights)
- Concept of accountability
- Empowerment(give people the capacities, the capabilities and the access needed to improve their own lives and to influence their own destiny)
- Non-discriminationand attention to vulnerable groups
- Note #10
- Handicap International, SHIA, HSO, A Guidance Paper for an Inclusive Local Development Policy Lyon, 2008, www.make-development-inclusive.org
- Note #11
- Handicap International, SHIA, HSO, A Guidance Paper for an Inclusive Local Development Policy Lyon, 2008, www.make-development-inclusive.org
- Note #12
- Disability Monitor Initiative-Middle East, Access to Social Services for Persons with Disabilities in the Middle East, Multi-stakeholder reflections for a Policy Reform, 2009
In this report, the concept of social services covers a large and diversified range of services, intended to improve the standard of living of the population, especially of individuals and groups in vulnerable situations. They are linked to national welfare schemes and are important tools for the implementation of public policies in the fields of social protection, non-discrimination, poverty reduction and exclusion. They are not conditioned by the contribution of the users, but enhance the capacities of individuals for full inclusion and partici- pation in society. They respond to social needs and social deficits, which the market either cannot manage or can even be generated by the market. States are responsible for ensuring the access of all citizens to social services.
- Note #13
- Description based on the EC Communications, as well as on the perspective of several European plat- forms that are active in the field of social services – Social Platform, Eurodiaconia, EASPD
This report was commissioned by Stars of Hope Society and sets out the find- ings and recommendations based on a study that examined the human rights situation of women and girls with disabilities in five jurisdictions of the Middle East and North Africa Region (MENA) – Egypt, Jordan, Palestine, Sudan and Yemen. Due to the scope of the report and the complexity of the Palestinian case, the analysis on Palestine will focus mostly on the West Bank area, as Gaza and East Jerusalem are under different legislatures.14
Stars of Hope Society for the empowerment of women with disabilities was established in 2006, as a result of this discrimination against women with disabilities, and the lack of stakeholders addressing this issue at national and regional levels. Based in Ramallah,Stars of Hope (SHS) seeks to ensure the advancement of education in Palestinian society,concerning the status and needs of women with disabilities, in order to promote equityand reduce the suffering, poverty, exploitation of, and discrimination against, Women with- Disabilities. SHS is an organization led by women with disabilities that works with, and for, women with disabilities. It has been increasing the awareness of women with disabilities of their rights, as well as building their capacities and developing their professional skills to improve their chances of reaching out for equal job opportunities.
As the only organization of rights of women with disabilities prevailing in the Middle East, and based on its experience in Palestine, SHS is keen to strengthen the movement of women with disabilities in the region. In order to achieve this, SHS has been implementing a project entitled “A step forward”, since 2009. This project aimed to empower women with disabilities to engage in local and national advocacy for the implementation of the UN Convention on the Rights ofPersons with Disabilities (CRPD); to enhance the collabora- tion between women with disabilities and national stakeholders involved in the field of disabilities;and to establish regional coordination among women with disabilities from the countries in this study.15
Stars of Hope has extensive experience working throughout the MENA region with women with disabilities and their representative DPOs as well as working with International Organizations with the aim of strengthening the civil society networks which are crucial to raise awareness and lobby the rights of WWDs.
- Note #14
- For more information on the historical complexities of Palestinian law, see for example BirZeit University, Legal Status in Palestine (last accessed August 4 2013)
- Note #15
- Stars of Hope (2011) A step forward to the social inclusion of girls and women with disabilities in the Middle East – Multifaceted challenges and combined responses, p. 3.
In particular SHS is based in Palestine and has long worked with Palestin- ian women the occupied Palestinian territories and in neighbouring countries where they are to this day refugees and minorities. With this in mind, the re- port also discusses some of the barriers and circumstances facing Palestinian women with disabilities who live in refugee camps in Lebanon.
Taking the standards of the 2006 UN Convention on the Rights of Persons with Disabilities(CRPD) as benchmarksas well as the 1979 UN Convention on the Elimination of all forms of Discrimination against Women (CEDAW),the report covers all areas of rights concerning the most important issues affecting women with disability in the region. It focuses on three main issues: violence against women, access to justice and political participation. Stars of Hope and its network of DPOs and women with disability who participated in the planning stages and data collection of this paper, decided together to focus on these issues as identifiedby them as the ones that have remained largely unexplored in the region. While study on the human rights of persons with dis- abilities is still generally scarce, previous studies have addressed themes such as access to services, social participation and accessibility (e.g. DMI Report, 2008).
In the context of the Arab Spring and the social and political changes that en- sued in countries throughout the region, it was thought as relevant to examine how women with disabilities fare and what are the particular challenges that they face in realizing their rights to participate in the public life, to access jus- tice and be protected from all forms of abuse and violence, on equal terms with all other citizens. As explained by the Arab Social media Report,the “so- cietal and political transformations taking place across the region played an instrumental role in challenging stereotypes about Arab women as oppressed and subservient”. Women have in fact, played a the leading role “in orches- trating and participating in social movements in Tunisia, Egypt, and Yemen has cemented their position as equal partners to men in transforming the political landscapes in their countries”.16 To date is still early to precisely measure the extent and influence of women in the Arab Spring on Arab societies.
- Note #16
- Dubai School of Government, The Role of Social Media inArab Women’s Empowerment’,Arab Social media Report, Vol 3(1), November 2011.
It should also be taken into consideration that this context of political insta- bility has also arose serious negative consequences particularly for the most vulnerable sections of society such as for women and children. However, it is safe to say that civil society has seen somewhat a ‘rebirth’ after a long period of inactivity and repression from authoritarian regimes and societal pressures. Civil Society Organizations (CSOs) including Disabled People’s Organizations (DPOs), have been able to raise the voices of their respective representative populations and bring their issues to the forefront of media and political agendas.
In this light, it is hoped and expected that the findings and recommendations derived from this study can inform advocacy work and be used to impact posi- tive change for women with disabilities across the region.
Stars of Hope and the members of its partner network of DPOs in each target- ed country, notably mostly women with disabilities who were the lead agents for this study, collected and analysed the data in collaboration with York Uni- versity. This report uses a methodology developed through the Law and Policy Monitoring Template developed by Disability Rights Promotion International (DRPI). Launched in 2002, DRPI is an international project that works to establish a global system for monitoring and reporting discrimination and vio- lations of the human rights of persons with disabilities. Within the scope of this study the tool was tailored in collaboration with SHS, to a more gender sensitive approach, in line with both the data collectors and respondents.
In line with SHS’s principles, DRPI has made it a guiding principle that per- sons with disabilities and representatives of their organizations have a central role as key stakeholders in disability rights monitoring. They are the primary target group for participation in the DRPI training and monitoring activities, as a strategy to promote their empowerment and increase the sustainability of disability rights monitoring work. Additionally, governments, communities and the private sector are also called upon for knowledge mobilization and for stimulating cultural and social change.
In accordance with this methodology, twelve women with disabilities, follow- ing an initial training organized by SHS, engaged in fieldwork in their respec- tive countries and gathered the bulk of information on the basis of which this report was written (a detailed description of this process is provided in the Methodology section in this report). While this was an empowering experi- ence for all of them, women had unequal access to data and resources, which impacted the depth and breadth of the information provided in this report. Future studies will be able to build on this work to deepen and widening this first pioneering regional effort.
This report constitutes one of the first attempts to examine, the interplay of gender and disability, from a rights perspective in the MENA region. Yet the complexity of these relations, the density of the social and cultural dimensions that they entail, and the shifting political contexts in which they are taking place, make this an audacious and wide-ranging endeavour. It is also hoped that this study will inform and lead the way for other research which is needed to continue this effort and address the many questions that at this historic point for the region still remain unanswered.