Graduate School of Development Studies

A Research Paper presented by:

Irene Nzagi

(Tanzania)

in partial fulfilment of the requirements for obtaining the degree of

MASTERS OF ARTS IN DEVELOPMENT STUDIES

Specialization:

[Human Rights, Development and Social Justice](HDS)

Members of the examining committee:

Dr Karin Arts [Supervisor]

Dr Rachel Kurian [Reader]

The Hague, The NetherlandsNovember, 2009

Disclaimer:

This document represents part of the authors study programme while at the Institute of Social Studies. The views stated therein are those of the author and not necessarily those of the Institute.

Research papers are not made available for circulation outside of the Institute.

Inquiries:

Postal address:Institute of Social StudiesP.O. Box 297762502 LT The HagueThe Netherlands

Location:Kortenaerkade 122518 AX The HagueThe Netherlands

Telephone: +31 70 426 0460

Fax: +31 70 426 0799

Contents

vList of Figures

vList of Maps

ixAbstract

10Chapter 1People with Albinism in Tanzania Mainland: Introduction

101.1Problem Statement

121.2Albinism as a Condition in Tanzania

141.3Background

151.4Justification and Objectives

15Objectives

16Research Questions

161.5Methodology: The Data Collection Process

161.6Primary Data

16Interviews

171.7Secondary Data

171.8Challenges of the Research

181.9Organization of this Paper

19Chapter 2Theorizing disability, social exclusion and rights

192.1Introduction

19Disability

192.2Medical and Social Models of Disability

202.3The Human Rights-Based Approach (RBA)

212.4Social Exclusion

22The Nexus between Social Exclusion and Poverty

232.5Processes of Social Exclusion

23Exclusion from Employment, Health Care, Education and Security

23Employment

25Health Care

25Security

26Role of the Family in Social Exclusion or Inclusion

262.6Social Aspects of Albinism: Attitudes and Beliefs

28Witchcraft

282.7Causes of the problem

302.8The Legal Framework

30Global International Standards of Human Rights

312.9Regional Human Rights Instruments

32The Tanzanian Constitution, laws and policies

322.10Witchcraft and the Law

332.11Conclusion

34Chapter 3Human Rights Challenges by PWA in Tanzania: The Findings

343.1Introduction

34Employment

35Health Care

433.2Conclusion

44Chapter 4Responses to the situation of People with Albinism in Tanzania.

444.1Introduction

44The State

474.2The Petition

484.3Conclusion

49Chapter 5Conclusion

495.1Introduction

505.2Recommendations

50Long Term measures

52Short Term

References

53

57Appendices

List of Figures

11Figure 1: Prevalence of Disabilities in Tanzania

29Figure 2: Poverty and Disability A vicious cycle

39Figure 3: Primary Education: Number of Pupils by type of Disability in Primary Schools, 2009

40Figure 4: Secondary Education: Number of Students with Disabilities in Secondary Schools, 2009

List of Maps

12Map 1: Map of Tanzania

Acknowledgements

I thank God for the strength and guidance he gave me during the last 15 months of this exciting but challenging experience.

I am heartily grateful to my supervisor Karin Arts and second reader Rachel Kurian for their guidance, encouragement and support from the beginning of the research paper to its completion. They guided me well and also allowed me to work in my own way and for that I am thankful.

I would like to record my gratitude to Professor Chris Maina Peter for his guidance and wisdom during the writing of this research paper. Whose help aided me immensely to see things from a Tanzanian perspective and without whom, the task of finding respondents would have been a difficult one indeed.

Lastly, I present my regards and blessings to all of my friends and all of those who supported me in any respect during this unforgettable journey as well as those who gave up their time and agreed to be interviewed by me.

Asante

DEDICATION

To mum and dad, the best parents a kid could ask for.

To Baba Mkubwa, Mzee Jeki, wish you were here.

Thank you all for your continuous support of my educational endeavours.

To all of those in pursuit of justice...the fight goes on.

List of Acronyms

BBC

British Broadcasting Corporation

BEST

Basic Education Statistics in Tanzania

CHRAGGCommission for Human Rights and Good Governance

CIA

Central Intelligence Agency (US)

CRC

Convention on the Rights of the Child

CRPD

Convention on the Rights of Persons with Disabilities

CWA

Children with Albinism

CWD

Children with Disabilities

Dfid

UK Department for International Development

HBS

Household Budget Survey

IILS

International Institute of Labour Studies

LHRC

Legal and Human Rights Centre

MOEVT

Ministry of Education and Vocational Training

NBS

National Bureau of Statistics

NGOs

Non-Governmental Organisations

NSGRP

National Strategy for Growth and Reduction of Poverty

OCA

Oculocutaneous Albinism

OHCHR

Office of the High Commissioner for Human Rights

PEDP

Primary Education Development Programme

PWA

People with Albinism

PWD

People with Disabilities

R.E

Revised Edition

REPOA

Research on Poverty Alleviation

TAS

Tanzania Albino Society

UDHR

Universal Declaration of Human Rights

URT

United Republic of Tanzania

UTSS

Under The Same Sun

WHO

World Health Organisation

Abstract

Social exclusion is an alien concept in Tanzanias development discourse. This hasnt stopped its manifestation upon a group of the population who have endured exceptionally extreme challenges. Albinism in Tanzania for most has been misconstrued as a condition of mythical origin leading to the separation of people with albinism (PWA) from society, exclusion from fundamental rights and sadly death by witchcraft. Always living at the edge of society, PWA have borne the brunt of social discrimination, marginalisation and human rights abuses.

This study documents the situation of PWA in Tanzania. It assesses whether PWA enjoy the same rights as other citizens in Tanzania and whether there are mechanisms in place to ensure the realisation of those rights. The researcher explored the processes of social exclusion that PWA experience on a daily basis through interviewing PWA themselves; the role witchcraft plays in perpetuating the disadvantaging position of PWA and whether the judicial machinery is to their benefit or detriment. All of this supports an overall assessment of the question whether the state of Tanzania is living up to its human rights obligations vis--vis PWA. The research reveals that most PWA live in hardships and exclusion despite a series of human rights instruments that Tanzania has ratified but not all live this way, for those, the quest for justices continues. Some refuse to associate themselves with the victimhood of having albinism and live their lives as ordinarily as possible.

Relevance to Development Studies

Securing Human rights and ensuring development go hand in hand since human rights are embedded in development and are the platform for claiming and realising rights. Protection of the rights of vulnerable groups is essential for development. Development can be viewed through the framework of human rights as the progression of rights provided for under International norms. If permitted these groups can have a say on issues affecting their wellbeing. Being able to voice ones concerns one contributes towards the development and fight for social justice.

Keywords

Albinism, Disability, Human Rights, Social Exclusion, Tanzania.

Chapter 1 People with Albinism in Tanzania Mainland: Introduction

This study explores the social exclusion and struggle towards the realisation of the rights of people with albinism (PWA) in Tanzania. So far, little research has been done into this subject. Most of what is known about albinism has been socially constructed or has derived from ancient beliefs. This study aims to examine the role of the government in realising these rights, shed some light on the condition of albinism as well as taking a closer look at the lives of those who live with the condition and the hardships, discrimination and exclusion that they face in poverty-stricken Tanzania. The researcher chose to use the term PWA as opposed to albinos because they are people first who then have albinism.

The World Health Organisation (WHO) estimates that globally approximately 650 million people live with disabilities (WHO 2009a). Of these 650 million, a startling 80% is in developing countries. Their number is on the rise due to injuries, chronic diseases, ageing etc. Most people with disabilities (PWD) are poor and have limited or no access to basic services (WHO 2009b).PWD have generally been overlooked and left to strive and struggle for their most basic rights, primarily those of health, education and employment which are routinely violated in many countries.

80% to 90% of PWD of working age in developing countries are