Introduction

The Disability, HIV, and AIDS Trust (DHAT) is a non-governmental organization promoting disability, HIV and AIDS responses that address the needs and empowerment of disabled people, through building and strengthening the capacity of Disabled People’s Organisation (DPOs) in Zambia. The DHAT offices are at ZNAD House, Chinika Industrial Area, in Lusaka, Zambia. 

People with disabilities face a number of obstacles to their full and meaningful integration into and contribution to society. In addition to these obstacles comes the burden of facing stigma, discrimination and responding to HIV & AIDS and inclusion. On top of difficulties already faced, disabled people and their families face new sets of challenges that include access to HIV & AIDS related interventions and services deliveries, increased health vulnerabilities and information which is insensitive/ not accessible to their needs.

About 15% of the Zambian population constitutes PWDs. The participation of Persons with Disabilities (PWDs) in a number of issues that affect human lives is important in order to influence participation and self representation in pursuit of issues that affect them.

The participation of PWDs is impeded and shrouded in a number of misconceptions that technically exclude them from participation and involvement in socio-economic activities. PWDs are among the poorest and least educated in the world[1]. It is acknowledged that PWDs are not included in many HIV and AIDS interventions because of stigma and discrimination based on stereotypes that they are asexual.

The significance of health and inclusive education is well understood and articulated by many education and HIV/AIDS service providers. Among all marginalized groups PWDs receive the least in education. Despite the formulation of health strategies, international conventions and policies and enactment of legislation to support inclusive education and response to emerging health issues e.g. HIV/AIDS, nothing significant has been put into practice.

Disability organizations are among the least resourced and grossly not trusted with financial resources. Funders and service providers stereotype PWDs based on the charity model that DPOs have no transparency and accountability in the management of resources that they receive.  On the other hand, DPOs do not have proper organizational systems and policies.

PWDs have remained on the periphery of economic empowerment and access to health service delivery; marginalized to the basic forms of livelihoods and health information that they can only survive on. However examples abound of how PWDs have demonstrated their prowess in ensuring success in education and empowerment when given adequate opportunities. Certain economic activities are pitifully assigned to PWDs

PWDs experience stigma from birth and are more prone to exclusion, concealment, abandonment, institutionalization and abuse. In health and education PWDs are ostracized. They do not enjoy health and education services at the same level with their non disabled peers.

While efforts are being targeted at providing Universal Primary Education (UPE) and health care under the Millennium Development Goals (MDGs)’ theme “Education for All by 2015”, about there is still a significant number of children with disabilities out of school and not accessing  health facilities.  Africa has an appalling less 2% of Children with Disabilities in school. It is also apparent that PWDs are invisible in grassroots sports. A lot has to be done to get PWDs involved.

Rationale for study

In order to direct concerted attention to participation, representation and empowerment of disabled persons in Zambia, the types and patterns of exclusion and discrimination need to be adequately catalogued and understood. This is important for the disability movements, government and Non Governmental organizations to devise, fund, implement and supervise human rights based programmes to alleviate the disadvantages faced by PWDs.

The study will focus on the demographic involvement of men and women or boys and girls in thematic areas such as policy design, HIV/AIDS programmes, education and entrepreneurship determining persons with disabilities’ (PWDs) level of participation, representation and empowerment of in Zambia. Women and men have comparatively varying degrees in the levels of participation and empowerment in all spheres of human persuasion.  The areas of focus are economic empowerment, inclusion in education

 Goal of the survey:

To assess the social, cultural, economic and political participation, representation and empowerment of Persons With Disabilities in Zambian Communities in six provinces

Objectives

  • To determine the level of participation of men and women with disabilities (MWDs) in social, health and economic development activities
  • To  catalogue areas of abuse and discrimination of PWDs in various areas
  • To  determine levels of inclusion of  PWDs in education and other social services
  • To determine  the availability of HIV and AIDS policies in DPOs

Outcomes

  • Comprehensive report on the analysis of the level of inclusion of persons with disabilities in  social, cultural, political,  economic and health programmes
  • A catalogue of  levels of abuse and discrimination experiences of PWDs
  • A report on the levels of inclusion of children with disabilities in education, health  and other social services
  • A report on the availability and levels of organisational systems and policies development e.g. financial, HIV and AIDS in DPOs.

Expected use of information

  • The information will be used  as an awareness raising and advocacy too
    for inclusion of PWDs in country strategies and programmes at village, district, provincial and national levels,
  • To be used by DPOs, DHAT, Civil Society, Donors, Government and other stakeholders  in the development of right based strategies and programmes for PWDs. and
  • The information will be used as a measurement tool in achieving the MDGs on health and education for PWDs.
  • The recommendations will build stronger links between PWDs and the policy and legislation makers and health care, education and economic empowerment p programmes providers..

                                                        Guiding Questions

  1. Level of Participation of Persons with Disabilities

To determine the level of inclusion of men and women with disabilities in decision making, representation and empowerment activities

  • Do persons with disabilities have the same possibilities as their non disabled peers to get/access appropriate information, reproductive health services and rights education?
  • Is there legislation, or other references in your country that protects people from discrimination?
  • If not, is disability mentioned or acknowledged as a cause of discrimination at local level in any type of reference?
  • Catalogue areas of abuse and discrimination of PWDs in various areas
  • What support can the community offer to families with children with disabilities to prevent concealment, abandonment, neglect or segregation of the children?
  •  What happens to a child with disability when the immediate family is unable to care for the child – will the community provide care in a family setting?
  • Is disability mentioned or acknowledged as a cause of discrimination at local level in any type of reference?
  • Is there legislation, policies other references in Zambia that protects people with disabilities from stigma and discrimination?
  • What kind of examples are there for as evidence for exploitation, violence and abuse against  persons with disabilities
  • Children and women with disabilities might need other forms of support than men with disabilities to prevent exploitation, violence and abuse. Are these aspects been taken into consideration by the stakeholders?
  • Levels of inclusion of children with disabilities in education and other social services
  • Is education in sign language given to children who are deaf or hard of hearing? Are other children with physical disabilities included in the education sector? If so how?
  • What structures of inclusive education exist in Zambia? Are there policies to guide inclusive education in Zambia?
  • What advocacy strategies do DPOs have for promoting inclusive education in Zambia?
  • Do you know whether the country has a policy on disability that encourages inclusive education?
  • Are there designed or implemented specific programmes?
  • Are there any best practices in inclusive education that lessons can be shared with? If yes what is key in the best practices to be learnt from
  • Persons with disabilities have the right to take part in recreational and sporting activities on equal basis with others. What do stakeholders do to make this possible for persons with disabilities?
  • What do stakeholders do to make it possible for persons with disabilities to develop and utilize their creative and artistic potential?
  • Does the local authority (or other local stakeholders) encourage and promote the participation of persons with disabilities in local mainstream sport activities?
  • Do persons with disabilities have the opportunity to organize and participate in local disability-specific sporting and recreational activities?
  • Do children with disabilities have the same access as other children to participate in play, recreation, leisure and sporting activities in the local area?

C.        Availability of HIV and AIDS policies in DPOs and capacity development

  • How does the local authority support the creation of DPOs and the continuous work of local DPOs to represent persons with disabilities and their families?
  • Are other civil society stakeholders supportive of DPOs and are they included in local networks and exchanges?
  • Are local non-governmental organisations and associations concerned with the accessibility of political and public life to persons with disabilities?

[1] Nora Ellen Groce (2003), HIV/AIDS and People with Disability, http://www.thebody.com