INSIGHT: ‘People with albinism need legal protection’

Two weeks ago, Tanzania marked the 9th anniversary of Albinism Week. In light of this event, The Citizen Reporter Sammy Awami had an interview with director of Under The Same Sun Vicky Ntetema. Excerpts…

QUESTION: As you marked Albino Week two weeks ago, what could be a milestone to celebrate for?

ANSWER: As Tanzania marks the 9th Anniversary of the country’s Albinism Day, there are so many things to be proud of as a country.   

Public awareness:  More people are becoming aware of the genetic condition – albinism - which is lack of melanin in the skin, eyes and hair.  They are more aware now than nine years ago that persons with albinism (PWA) are not ghosts, but human beings created by God in His image and that they have inherited the condition from both parents.  We hear less and less of the derogatory name, ‘zeru zeru’.

Health services:  At least more PWA now than before can be treated at the Ocean Road Cancer Institute and at KCMC’s Regional Dermatology Training Centre free of charge.  More people are aware that the sores/wounds on the skin of a person with albinism is due to sun exposure contrary to the myth many believe in that, “This is how these people are!”   Many medical personnel are willing to assist PWA dispelling the myth which make them believe that if “they touch persons with albinism they will be infected!”

Political field:  Tanzania had its first Member of Parliament with albinism in 2008.  Although this was a special seat appointed by President Jakaya Kikwete, it shows that PWA could be appointed and trusted to hold public offices and better still in this case, a political post at law-making and decision making level.  The icing on the cake was when Lindi Urban residents and voters became role models by voting for a person with albinism, Khalfan Barwan, to vie for a parliamentary seat amidst all those negative campaigns and derogatory comments and insults hurled at the opposition politician.  They are teaching all of us in Tanzania and Africa in general that a genetic condition or a physical impairment is not a disqualification in any political contest.  Disability is indeed not inability!  Ace to Lindi Urban residents!  Way to go!  We have two councillors with albinism in Tabora - Blandina Joseph (Special Seats) and in Iringa – Hellen Machibya.

Employment opportunities: Tanzania has the first dean of the Faculty of Law and also a senior lecturer, who is a person with albinism, Abdallah Possi. He will become the first PhD holder with albinism in Tanzania.  Ally Possi is the first law lecturer at Ardhi University.  The first ever senior Human Resource Officer with albinism is Sizya Migira in the office of Controller and Auditor General (CAG).  Ally Kondo has become the first Communication Officer with albinism at the Ministry of Foreign Affairs and International Relations, Gamariel Mboya is the first NGO Operations Manager with albinism, currently working with Under The Same Sun, Yamungu Jacob is the first economist with albinism, working now at the Prime Minister’s Office, Thomas Jackson is the first Resident Magistrate with albinism in Tanzania, currently at Njombe District Magistrate’s Court, to name but a few.

Education opportunities:  Many more children with albinism are being sent to school.  Many parents do not hide their children anymore because they understand the importance of education for their offspring with the genetic condition.  They understand that PWA have low vision and they need special devices to enhance the vision so that they can read and write clearly.  Educators are being trained in how to teach and care for students with albinism and assist them as special needs cases.  More PWA now pursue further education in higher leaning institutions in the country and abroad.

Entrepreneurship:  PWA especially women with albinism form self-help groups and acquire training in food processing, tailoring, soap-making production, poultry, batik and so on and engage in many other income generating activities.  Most of them (some of them parents with more than one child) have been deserted by their spouses and have little or no income.

How is the judicial process going as regards those implicated in albino killings?

If you compare the number of attacks on persons with albinism and the number of cases that have reached the courts of law it is clear that the legal process is moving at a snail’s pace to my liking. There are at least 135 attacks, but only 10 convictions. The country is facing many challenges in dealing with these cases:  lack of political will to allocate funds for investigations and trials, lack of resources in the Police Force and expertise to properly, efficiently and diligently investigate suspects, a culture of secrecy in society, whistle-blowers rather than the culprits are punished, some traditional beliefs entertain stigma and discrimination against PWA and cultural rituals which demand organs of PWA, fear of witchcraft and witchdoctors who propel the killings (even the elite and law-makers and law-enforcers are afraid of witchdoctors) who are regarded by some as gods, lack of faith in the community, corruption in the judiciary, the Police Force and government departments. In all these trials some of the end-users, dealers and buyers of the organs of PWA have been mentioned and their names are in police records.  However, not in a single one so far has been arraigned.

How do you think these cases could possibly be handled?

It is our opinion as an NGO that delays of trials of persons accused of various crimes with respect to atrocities committed to persons with albinism do constitute injustice not only to the victims who crave for knowing the fate of these cases to which they have interests, but also to the accused persons, some of who may not have been guilty. It follows that a final determination of the pending cases will either answer the questions with respect to guiltiness (or otherwise) of the accused persons or provide for some more answers that could help reveal the truth and, therefore, end speculations surrounding these cases.

The first advocate with albinism and a lecturer of law and the dean of the Faculty of Law at the University of Dodoma, Abdallah Possi, once said: “If the pace of trials is this slow (referring only 10 cases have reached the court so far against at least more than 100 documented albinism related killings, attempted murders, mutilations and grave robberies, the country will have to wait for at least 30 years for the current cases to be concluded in the Tanzania’s courts,”

Last month, your organisation celebrated five years since its establishment. What is it that UTSS feels proud of?

UTSS strives to promote the rights and wellbeing of PWA through education and advocacy. Five years on the organisation boasts the following:

Working with human rights instruments:  Its advocacy, accurate documentation and lobbying resulting in the proclamation of the United Nations High Commission for Human Rights (UNCHR) in September 2013 and the African Charter of Human and People’s Rights (ACHPR) in November 2013 on albinism.   Both international human rights instruments have instructed member states to adopt specific measures to protect and preserve the right to life and security of persons with albinism, as well as their right not to be subjected to torture and ill-treatment, and ensure their access to adequate health care, employment, education and justice, increase education and public awareness-raising activities and ensure accountability through the conduct of impartial, speedy and effective investigations into attacks on persons with albinism, the prosecution of those responsible, and ensure that the victims and members of their families have access to appropriate remedies.

Observer status:  The UN Economic and Social Council (ECOSOC) at its Substantive Session of July 2013 adopted a recommendation of the Committee on Non-Governmental Organisations to grant Special Consultative Status to Under UTSS Fund. This enabled the organisation actively engage with ECOSOC and its subsidiary bodies, as well as with the United Nations Secretariat, programmes, funds and agencies in various ways.   

In April this year, the African Committee of Experts on the Rights and Welfare of the Child (ACERWC) in Addis Ababa granted Observer Status to UTSS. Centres of Internally Displaced PWA (CIDPWA):  Researched and assessed nine government designated centres for internally displaced persons with albinism in Kagera, Kigoma, Mwanza, Shinyanga, Tabora and Tanga.  Among other things, the UNICEF funded programme conducted seminars on understanding albinism, provided protective gear and provided water, sanitation and hygiene materials in to the centres that host children and adults with and without albinism fleeing atrocities in their villages.

Better education for PWA:  Established Education Scholarship Fund (ESF) aimed at providing better education for the needy persons with albinism who are keen on learning at all education levels in Tanzania.  More than 320 PWA have benefitted under the ESF programme.  Most of the 192 ESF primary school grantees were taken from overcrowded centres of IDPWA and placed in private integrated boarding schools. More than 50 have graduated in various institutions.  Some have become government and NGO employees and the rest have embarked on higher learning studies.       First responder mission:  UTSS has a first responder team that travels to any area of Tanzania where atrocities have just been committed to offer psychosocial support to survivors and/or victims’ families and gather first-hand information about the attacks. 

Advocacy and public awareness campaigns:  Successful public awareness campaigns on albinism through international and domestic print and electronic media, including Understanding Albinism/Tambua Albinism radio programmes on community radios thanks to Sibuka Fm – Dar es Salaam, Sibuka Fm - Maswa, Simiyu, Sengerema Fm – Sengerema, Mwanza, SAUT – Mwanza, Radio Tumaini – Dar es Salaam, Radio Maria – Dar es Salaam, Radio Faraja  – Shinyanga, Radio Chemchemi - Sumbawanga, Rukwa, Kahama Fm – Shinyanga, FADECO – Karagwe, Kagera. 

Are there any special and specific demands you are championing in this course of constitution making?

We believe there should be a law to protect witnesses in form of ‘Witness Protection Programme’.

We have seen in some cases the accused are acquitted simply because they were charged with murder or attempted murder. However, according to our research, in some circumstances surrounding these cases, there could be evidence with respect to other offences, such as possession of human parts. Therefore, it is our opinion that where it is difficult to prosecute for murder, the DPP’s office should consider prosecution with respect to other offences, considering the fact that a plea of “autrefois acquit/convict” may not stand in case the required evidence for murder is obtained at a later date.

The new Constitution should put emphasis on the issues of equality of opportunities and the rights of persons with disabilities.  The law should identify special needs for this group and should put in place the law that prohibits discrimination and stigma against persons with disabilities.

The Constitution should identify special education needs for persons with disabilities.  The Ministry of Education should put in place curricula which will include disability issues from kindergarten level to prepare the future generation that can embrace, value and respect persons with disabilities as their equals.  

Opportunities should be created for persons with disabilities to take their rightful places at every level of society. There must be a law to protect persons with albinism.

The Constitution should ban all witch doctors’ activities that fuel the atrocities against PWA. There should also be a tax exemption on sunscreen lotion and other medication for PWA. With regard to court cases, as an NGO that promotes the rights of persons with albinism, we are asking the DPP’s office not to leave police at district level to represent the state attorney as most of the officers have not shown required competence in advising prosecution witnesses – “have no experience in witness care.”